Question:

Hello All once again, I am on this low salt diet now but what is low salt?  The doctor didn’t tell me as he just said low salt?   Anybody know what the daily allowance of salt is for this type of diet? Thanks, Kev.-

Response:

Hey Kev, Some guidebooks allow up to 2 grams/day.  Most say under 1 gram/day.  That sounds like a lot, until you read food labels.  It is incredibly minute.  It is probably about 10% of what you are eating now.  Don’t expect to eat fast food for a while. Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address:     ae(SPAM_BLOCKER)neas@gw(SPAM_BLOCKER)is.com – Hide quoted text — Show quoted text -Kev.- wrote in message <3aab5c91.609380…@ns1.nothingbutnet.net

… Hello All once again, I am on this low salt diet now but what is low salt?  The doctor didn’t tell me as he just said low salt? Anybody know what the daily allowance of salt is for this type of diet? Thanks, Kev.-

Response:

Some guidebooks allow up to 2 grams/day.  Most say under 1 gram/day.  That sounds like a lot, until you read food labels.  It is incredibly minute.  It is probably about 10% of what you are eating now.  Don’t expect to eat fast food for a while.

How does one translate the info on a label into these recommendations? For instance, many TV dinners show 1200 mgs of sodium. A .5 Liter Coke has 35 mg. The only measure of how much salt is in processed food is how many mgs of sodium are listed on the label. I’m rusty with my college chemistry but I would guess that 1200 mgs of sodium in one TV dinner translates to almost 3 grams of salt. One reason TV dinners are so salty is to compensate for the declining tastebuds of the elderly who oddly enough should be eating less salt, not more. If, as I assume, sodium is the indicator of how much salt is in a processed food, how much sodium a day would be excessive for a low salt diet? — The path we choose leads us to what we become. Jack Rodgers Cellular: 954-464-5225 Website:  <http://www.jackrodgers.com/

Email:    <mailto:macvi…@bellsouth.net

Response:

Jack, I see what you are saying.  I think the guidelines mean the sodium portion of the ingredients and not the actual salt itself.  so, when I say less thean 1 gram, I mean 1 gram of sodium (or else how would anyone figure out how much salt they could have)? Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address:     ae(SPAM_BLOCKER)neas@gw(SPAM_BLOCKER)is.com – Hide quoted text — Show quoted text -Jack Rodgers wrote in message …

Some guidebooks allow up to 2 grams/day.  Most say under 1 gram/day.

That

sounds like a lot, until you read food labels.  It is incredibly minute.

It

is probably about 10% of what you are eating now.  Don’t expect to eat

fast

food for a while. How does one translate the info on a label into these recommendations? For instance, many TV dinners show 1200 mgs of sodium. A .5 Liter Coke has 35 mg. The only measure of how much salt is in processed food is how many mgs of sodium are listed on the label. I’m rusty with my college chemistry but I would guess that 1200 mgs of sodium in one TV dinner translates to almost 3 grams of salt. One reason TV dinners are so salty is to compensate for the declining tastebuds of the elderly who oddly enough should be eating less salt, not more. If, as I assume, sodium is the indicator of how much salt is in a processed food, how much sodium a day would be excessive for a low salt diet? — The path we choose leads us to what we become. Jack Rodgers Cellular: 954-464-5225 Website:  <http://www.jackrodgers.com/ Email:    <mailto:macvi…@bellsouth.net

Response:

Question:

Hi there ! Sorry, but what is sam-e ?? I have no clue ! Thanks, Thorsten

Response:

Tried sam-e solgar brand, took it for 3 weeks at 1200 mgs a day. 400mgs 3X a day had no noticable effect for me. I have found that St. johns wort is effective for me has definately improved my mood. I’ve been taking it 3times a day for 3 years . in the 300mg strength

Response:

There is a lot on SAM-e and depression under the forums concerning depression, fibromyalgia and alternative medicine.  Mary Ann In article <1567-37A31ACA…@newsd-132.iap.bryant.webtv.net

,

  BART…@webtv.net (ROBERT FARINA) wrote:

has anybody uesd it for depression any help thanks

Sent via Deja.com http://www.deja.com/ Share what you know. Learn what you don’t.

Response:

i have been on sam-e for ten day it has been very good for me no side effects         400mg a day  get it and you will feel better good luck to all bob

Response:

has anybody uesd it for depression any help thanks

Response:

Question:

Hi Marcy, Even though I know absolutely nothing about Transverse Myelitis, I can still understand what you are going through. It’s a very scary feeling knowing that you might lose the use of your legs. Hopefully, if it’s like MS the solumedrol  will alleviate some of the symptoms. All I can say is hang in there! And my thoughts and prayers will be with you <smiling

.

If you feel the need to talk then please feel free to email me. I don’t have use of my legs so I can definitely relate. Please try and relax. I know it’s easier said than done <smiling

. But this could only be temporary. Keep positive

thoughts <smiling at you

.

Take care, Dawn

Response:

Hi all, I just need to vent.  I am starting to feel completely useless and worthless. This is month 3.  If you remember in Sept, I had a bout with double vision, in October that calmed down a bit after of a run with IV Solumedrol.  Then I had the "seizures" for a while, which are still there now, just controlled by 1200 mgs of Neuronitin a day.  Now as of last Saturday, I have Transverse Myelitis per my Neuro.  My legs and feet are numb and heavy, up to my low chest.  I feel like Im wearing a tight girdle, but have no weakness or paralysis.  I do have weird increased sensation in my legs, and I know you MS people can understand having increased sensations, and being numb at the same time!  I am again on IV Solumed for 4 days. I am terrified I am going to be paralyzed again.  I cannot handle it.  My mental state is garbage again. Im scared to death.  I had previously been relatively symptom free for 12 yrs, until this year.  I have not worked since September and have applied for a disability retirement from my job. I guess I just need to hear from someone who has also had TM as part of an exacerbation and got better.  1998 was the pits, I hope 1999 is better. Thanks all for listening, I guess I needed to vent here because I know you all can relate. I hope you all had a great new year, and I wish everyone the best of health for the new year and for always. Please email me at BigGems…@earthlink.net if you’d like to reply.  I need to hear good news I guess. Thank you all and best of health, Marci — Marci BigGems…@Earthlink.net For my always up-to-date contact information, click here:      http://www.planetall.com/main.asp?cid=48281      It’s private, secure, and free! —————————————————- Reach me by ICQ. My ICQ# is 22801184 or, * Page me online through my Personal Communication Center: http://wwp.mirabilis.com/22801184 (go there and try it!) or, * Send me E-mail Express directly to my computer screen 22801…@pager.mirabilis.com For downloading ICQ at http://www.icq.com/ For adding similar signatures to your e-mail go to: http://www.icq.com/emailsig.html My Fax Number is: 369-8642 Marci Lewandowski —————————————————-

Response:

Question:

Excessive Vitamin Supplement Doses Found To Damage The Body. The research results given below demonstrate why we must be very careful about following the vitamin-taking advice of non-professionals. Too much is not known about vitamins to freely take mega doses without danger. By the way, some of you probably know that, until recently, FDA minimum daily requirements for vitamins represented only the MNIMUM required for health, NOT the OPTIMUM level. Now the FDA is developing the level of vitamins needed for OPTIMUM health. A few of the new levels have been published. The goal of the FDA is to complete all new standards by year 2,000. We are particularly at risk in following the advice of those who claim to have read and fully understand an almost unbelievable number of research reports. Believe me, it takes much more to fully understand research reports than simply reading them. One also needs an adequate scientific educational background. Self education normally does not provide an adequate knowledge base for others to develop appropriate standards. We must avoid taking chances with our health by listening to such uninformed advice. Even highly educated chemists make mistakes in safe vitamin levels. For example. a Nobel Laureate chemist, NOW DISEASED, promoted massive vitamin C doses. Therefore, the amount of a person

Question:

On Mon, 10 Nov 1997 22:02:59 -0500, Shelley Andrews <Wildm…@AOL.COM

wrote:

Dearest friends, Another trip to the neuro today has filled my purse with more drugs.  There has been many questions, answers, and statements regarding the above drug NEURONTIN- however, did I listen?  Did I read that info?                        NO So on bended knee, I beg.  Please tell me what you know.  I was given 300 mg capsules and 400 mg capsules.  I was told I could take up to 1200 mgs daily. I was also told to experiment with it to find out the right dosage for me. I was given this drug for terrible HORRIBLE headaches. Any input would be wonderful.  Thank you – Shelley

Hello, I am in the same situation right now, except my visit was last monday. I tried looking it up, but could only find good information about it related to epilepsy. Everything about MS and Neurontin is pretty sketchy. Did you feel really weird when you got home? It’s not every day where you get to dose yourself with prescription drugs. My bottle says to take at bedtime so I guess we just take however many at one time. All of this freedom is confusing me. I was also given it for headaches among other things. The day before, Sunday, at 4 AM I had the headache for less than a minute before I called 911. I was already pretty delirious, throwing up, etc. The paramedics got here and sort of freaked. I am 22 years old, 5 ft tall, about 100 lbs and have low blood pressure normally. My BP was 200 over something. Considering the above mentioned facts, the doctors thought I may have had an aneurism or my brain was bleeding. Naturally, my headache started feeling like a normal headache with 10 minutes of onset. But, hey…..I got to ride with the sirens and had my first cat scan. The funny thing is that within an hour of arriving at the hospital, I started craving their food. They have the best food there. I would even eat in the cafeteria for the heck of it. I don’t care what people say about hospital food, this place is great and they always let me eat whatever I want unlike my mother who still gives me THE look if I am even considering in my mind a meal of macaroni and cheese, mashed potatoes and whatever other carbohydrates you can think of. YUM. …….Missy ___________________________  Learn More About         Multiple Sclerosis http://www.nmss.org/ ___________________________

Response:

Shelley, I knew there was a reason I ahd stopped neurontin before, but couldn’t remember. I told her it didn’t work. Then about 4 days into taking the meds I remembered why I quit taking it. It spaces me out, more than normal. At least when I act crazy normally I know what I’m doing, but with that medication I couldn’t remember anything. I was having to ask people to resend requests to me when they had asked for something. I could not remember. In fact, I couldn’t remember names, now, that is normal, but not people I talk to every day. Just be careful and watchful. Margaret in Florida

Response:

Dearest friends, Another trip to the neuro today has filled my purse with more drugs.  There has been many questions, answers, and statements regarding the above drug NEURONTIN- however, did I listen?  Did I read that info?                         NO So on bended knee, I beg.  Please tell me what you know.  I was given 300 mg capsules and 400 mg capsules.  I was told I could take up to 1200 mgs daily.  I was also told to experiment with it to find out the right dosage for me.  I was given this drug for terrible HORRIBLE headaches. Any input would be wonderful.  Thank you – Shelley

Response:

Shelley, watch the neurontin, if you get to feeling like you are out in left field be careful. I was put on neurontin once and it didn’t help my pain and I forgot why I quit using it. My pain doctor asked me again to try it and voial! I remembered why I quit taking it before. It spaced me out. I couldn’t remember what anything was about, I couldn’t spell, I couldn’t think straight. Some folks had asked me something on the e-mails and I could not remember what I was asked for. I really had a number done on my brain. I quit that stuff and now I am back to "normal", well as normal as I can be, but no where near like I was on that stuff. It is expensive, but I wonder how logn they woulda kept me in the padded cell had I not stopped taking it

I am not knocking the medication, if it works, please use it, but, be careful as it may do you like it did me, and I don’t need any help in being crazy. Margaret

Response:

- Hide quoted text — Show quoted text -Margaret Sessions wrote:

Shelley, watch the neurontin, if you get to feeling like you are out in left field be careful. I was put on neurontin once and it didn’t help my pain and I forgot why I quit using it. My pain doctor asked me again to try it and voial! I remembered why I quit taking it before. It spaced me out. I couldn’t remember what anything was about, I couldn’t spell, I couldn’t think straight. Some folks had asked me something on the e-mails and I could not remember what I was asked for. I really had a number done on my brain. I quit that stuff and now I am back to "normal", well as normal as I can be, but no where near like I was on that stuff. It is expensive, but I wonder how logn they woulda kept me in the padded cell had I not stopped taking it I am not knocking the medication, if it works, please use it, but, be careful as it may do you like it did me, and I don’t need any help in being crazy. Margaret

For the same reasons Margaret I quit taking the the Neurotin and went back to tegratol. Frank

Response:

Margaret, Thanks for your input.  It is greatly appreciated. God bless, Shelley

Response:

I take 300 milligrams of neurontin, four times today for a total of 1200 milligrams.  I use it for relief from the hot striating pain throughout the lower half of my body, which many of us seem to have.  It relief about 60 to 80 percent of the pain, which gets me on top of things, and for which I am very grateful.  I do notice that my balance is more OFF with the drug.  It is a trade-off. Otherwise there are no side effects for me.  It feels good. Marilyn Chilcote dictating with Dragon NaturallySpeaking, and happy with it – Hide quoted text — Show quoted text -Shelley Andrews wrote:

Dearest friends, Another trip to the neuro today has filled my purse with more drugs. There has been many questions, answers, and statements regarding the above drug NEURONTIN- however, did I listen?  Did I read that info?                         NO So on bended knee, I beg.  Please tell me what you know.  I was given 300 mg capsules and 400 mg capsules.  I was told I could take up to 1200 mgs daily.  I was also told to experiment with it to find out the right dosage for me.  I was given this drug for terrible HORRIBLE headaches. Any input would be wonderful.  Thank you – Shelley

Response:

Question:

Hi, Not sure whats goin’ on but I didn’t email this below.  Looks as though someone’s cut and paste has got out of hand?…… : ) Jackie (bara) – Hide quoted text — Show quoted text -

Honeymonster wrote: In article <37944C5F.BFFC7…@rivernet.com.au, b…@rivernet.com.au (J&E) wrote: Yes you’re coming through loud and clear. Alan Funny, I didn’t hear a thing from that one – you must have a very good newsreader! Or perhaps you are psychic. I was going to try to help that poster, but I didn’t understand the question myself … so you’ve beat me to the punch. Aloha, kolohe kane, ;- — Leola I thought that bara was testing and needed encouragement. Aloha Pumehana

Response:

In article <379FA23D.74D59…@rivernet.com.au

, b…@rivernet.com.au (J&E)

wrote:

Hi, Not sure whats goin’ on but I didn’t email this below.  Looks as though someone’s cut and paste has got out of hand?…… : ) Jackie (bara)

You didn’t e-mail anything Jackie.  You posted it to the Newsgroup,   otherwise how could I have told you that you were coming through loud and clear? Welcome to the Newsgroup Jackie! Alan

Response:

- Hide quoted text — Show quoted text -J&E wrote:

Hi, Not sure whats goin’ on but I didn’t email this below.  Looks as though someone’s cut and paste has got out of hand?…… : ) Jackie (bara) Honeymonster wrote: In article <37944C5F.BFFC7…@rivernet.com.au, b…@rivernet.com.au (J&E) wrote: Yes you’re coming through loud and clear. Alan Funny, I didn’t hear a thing from that one – you must have a very good newsreader! Or perhaps you are psychic. I was going to try to help that poster, but I didn’t understand the question myself … so you’ve beat me to the punch. Aloha, kolohe kane, ;- — Leola I thought that bara was testing and needed encouragement. Aloha Pumehana

Aloha Jackie, I saw a subject line with your name on it in the group but there was a blank screen – no message – the subject line may have said "test" (I honestly don’t remember). Honeymonster (Alan) and I were goofing around with each other (as we often do) about the blank screen, that’s all. He wrote (in response to the blank message: "Yes, you’re coming through loud and clear" … so I replied to Alan that he must be psychic (because I saw only a blank message too)… just goofing around. It’s mostly Alan who starts these silly things, <:::eyes dancing:::

he’s a rascal (although I certainly must admit I have my own peculiar wacky sense of humor, too … many of us here do, laughter _is_ good medicine). Welcome to the group – and please bear with our bits of sillyness (many of us use humor as a coping mechanism – but not at someone else’s expense). Nothing was cut or pasted, not to worry – it was just Alan and I bouncing funny comments off of one another over what appeared here as a blank post. Warm aloha from Hawaii, and good health to you — Leola ~~  Keep in mind always the present you are constructing.  It should be the future you want. ~~      - Alice Walker

Response:

In article <37A1694E.98858…@jach.hawaii.edu

, le…@jach.hawaii.edu

– Hide quoted text — Show quoted text -(Leola) wrote:

J&E wrote: Hi, Not sure whats goin’ on but I didn’t email this below.  Looks as though someone’s cut and paste has got out of hand?…… : ) Jackie (bara) Honeymonster wrote: In article <37944C5F.BFFC7…@rivernet.com.au, b…@rivernet.com.au (J&E) wrote: Yes you’re coming through loud and clear. Alan Funny, I didn’t hear a thing from that one – you must have a very good newsreader! Or perhaps you are psychic. I was going to try to help that poster, but I didn’t understand the question myself … so you’ve beat me to the punch. Aloha, kolohe kane, ;- — Leola I thought that bara was testing and needed encouragement. Aloha Pumehana Aloha Jackie, I saw a subject line with your name on it in the group but there was a blank screen – no message – the subject line may have said "test" (I honestly don’t remember).

It simply had a title "Please help me understand? and no message.  I was just bringing understanding and encouragement to the young lady as she seemed lost for words,  but maybe Jackie is new at computers or something.

Honeymonster (Alan) and I were goofing around with each other (as we often do) about the blank screen, that’s all. He wrote (in response to the blank message: "Yes, you’re coming through loud and clear" … so I replied to Alan that he must be psychic (because I saw only a blank message too)… just goofing around. It’s mostly Alan who starts these silly things, <:::eyes dancing::: he’s a rascal (although I certainly must admit I have my own peculiar wacky sense of humor, too … many of us here do, laughter _is_ good medicine).

MOI?  A rascal!  How could anybody ever think such a thing?  Don’t listen to her Jackie!  Leola is mistaken!  Honest!

Welcome to the group – and please bear with our bits of sillyness (many of us use humor as a coping mechanism – but not at someone else’s expense). Nothing was cut or pasted, not to worry – it was just Alan and I bouncing funny comments off of one another over what appeared here as a blank post.

Besides Leola doesn’t know how to cut and paste at all!  She can only spill sticky stuff over keyboards and make typos which I seize on immediately!

Warm aloha from Hawaii, and good health to you — Leola ~~  Keep in mind always the present you are constructing.  It should be the future you want. ~~      - Alice Walker

All the construction engineers have downed tools ‘cos it’s too hot! Alan If at first you don’t succeed then skydiving is not for you!

Response:

BJ wrote:

I haven’t been around here that long, so I missed the diet info.  Would you mind repeating it or directing me to that thread.  I’ve been taking milk thistle and had already cut back the amount of fat in my diet dur to gallbladder problems.  Any other tips?

Aloha again BJ, I should also mention that have been taking Milk Thistle (900-1200 mgs daily) for about 5-6 years, along with other Hawaiian and Traditional Chinese Herbs, as well as Selenium with Vit.E, borage and flax seed oil, and various other supplements, as well as accupuncture and general TCM (Traditional Chinese Medicine) – all under the supervision of a highly reputable TCM practitioner I know well and trust completely. We adjust my herbs as my boody needs dictate from time to time, I plan to add more NAC to my supplements very soon, and I’ve also recently increased my St.John’s Wort intake due to some studies indicating it may have some anti-viral properties (my western-trained PCP has suggested I do that, as she’s been studying and learning too, she has many hepC patients). So – just my improved diet alone is _not_ what I solely attribute my normalized LFT’s to – I wanted to be very clear on that point. For me, TCM and herbs and supplements have been the right thing to do. Your mileage may vary. Aloha pumehana, — Leola ~~  Keep in mind always the present you are constructing.  It should be the future you want. ~~      - Alice Walker

Response:

BJ wrote:

I haven’t been around here that long, so I missed the diet info.  Would you mind repeating it or directing me to that thread.  I’ve been taking milk thistle and had already cut back the amount of fat in my diet dur to gallbladder problems.  Any other tips?

Aloha BJ, Welcome to the group! Sorry it took awhile to get back to you, I haven’t been online much lately. I can’t remember any specific diet things I posted about, – I think this was in response to a relatively old post, and I frankly can’t remember what I said in it, there’s been so much going on in my life just now. As to my own diet, I used to have a really awful diet, ate whatever I wanted, lots of greasy KFC and other fast foods, skipped lots of meals, ate lots of prepared and processed foods, and drank too much booze. So a couple of years after my 1990 diagnosis I cut out all junk foods, processed and refined foods, (as much as possible I’ve cut out white sugar and refined flour, white rice), I’ve cut down on sweets, stopped eating meat, I eat lots of raw or steamed veggies, _lots_ and lots of fruit (largely bananas). I get a reasonable amount of protein (fish and other sources). I drink lots of distilled water. My own ph balance tends to be rather acidic so I’ve personally cut back on acidic type foods (which makes my excess-acid stomach happier). Of course no alcohol. I also have given up dairy products (except for small amounts of butter, which I won’t give up … (and some ice cream every once in a very great while – I gotta have some small vices <grin

, …

and I have also cut out most fats, and eat no fried foods or greasy foods at all). I eat some good whole grain breads, sometimes rye breads or dark German breads – also lots of local Hawaiian food which is low in iron and good for me. I had my gall bladder removed in March, I had become practically a fruitarian for the few months preceeding, due to the attacks of pain and vomitting – I thought my diet had been pretty good up until then, but it’s now a _lot_ better!! (I could have done without the painful lesson, though). <grin

I try to snack on 6-7 small meals per day rather than just a couple of big meals, and I try to balance my diet sensibly and eat organic as much as possible. In general I think it’s a basically reasonable healthy diet for almost anyone. Oh, I also drink daily a cup of fresh squeezed carrot/beet juice (beets are very good for the liver). I try to read up on what foods are good for the liver and eat more of those, and avoid foods that are not good for the liver. For example, I try to eat lots of artichokes, which are a member of the Milk Thistle family, and _very_ healthy for us. As you read the group, you’ll pick up lots of general and specific information on foods, nuitrition and healthy liver-supportive habits. There are some articles I plan to post here about nuitrition for people with hepatitis, and from time to time someone will post some recipe for a good liver flush, or other good foods. I’m sorry I don’t have some better and more specific regular diet to share with you, but I hope the above was of some help to you. I’ve probably forgotten something important that I have come to take for granted in my dietary habits, – I hope someone else will post about what they do or don’t eat, which might give you some ideas. Warm aloha to you, – very sorry for the response delay. — Leola, in Hawaii ~~  Keep in mind always the present you are constructing.  It should be the future you want. ~~      - Alice Walker

Response:

I haven’t been around here that long, so I missed the diet info.  Would you mind repeating it or directing me to that thread.  I’ve been taking milk thistle and had already cut back the amount of fat in my diet dur to gallbladder problems.  Any other tips? Sent via Deja.com http://www.deja.com/ Share what you know. Learn what you don’t.

Response:

J&E wrote:

Hi Leola, I meant to do this before – better late than never – thanks for your warm welcome – and aloha (actually it’s more like "ow yer goin") from cold and windy Sydney!

Well it’s cold and windy here at the moment too (I guess that’s relative – you folks are in your winter season now, right?) … it’s rainy here and chilly for August, this week, at least it sure feels that way compared to last week.

I was interested in your story about how you got your liver tests back to normal with diet.  My gastro. told me repeatedly that I should eat what I like and just enjoy my life….because it won’t make a difference. I’m glad I didn’t take his advice!  I’ve changed him since then by the way!

Same thing I was told in 1990, so I spent 2 years messing around eating lots of greasy KFC and other foods, drinking alcohol after work cause my job was so stressful and I was so tired … and basically being in denial … wasting 2 years of the time that I could have spent getting started earlier on my healing process. I should have known better my own self. They just don’t teach these Drs. about nuitrition in med school, is a big part of the problem. Still, comon sense ought to tell them good nuitrition is vital to _everyone’s_ health – you know? For heppers – drinking LOTS of water – taking Milk Thistle, etc. – any ole’ Dr. worth his/her $$$ should know that. Oh well, glad you changed Drs. too, hope your new one is better. (*smile*)

Bye for now… Jackie

Take care, good health to you ! — Leola ~~  Keep in mind always the present you are constructing.  It should be the future you want. ~~      - Alice Walker

Response:

Hi Leola, I meant to do this before – better late than never – thanks for your warm welcome – and aloha (actually it’s more like "ow yer goin") from cold and windy Sydney! I was interested in your story about how you got your liver tests back to normal with diet.  My gastro. told me repeatedly that I should eat what I like and just enjoy my life….because it won’t make a difference. I’m glad I didn’t take his advice!  I’ve changed him since then by the way! Bye for now… Jackie "alt.support.hepatiti…@list.deja.com" wrote:

 Sent via Deja.com http://www.deja.com/  Share what you know. Learn what you don’t.

Response:

Question:

mom <m…@mom.net

wrote in message

news:EL2dnUyVtp_2G42iRTvUqg@bedford.net… – Hide quoted text — Show quoted text -> "hippiechik" <noca…@byebye.com

wrote in message

> news:vh0u9pea2tcje4@corp.supernews.com… > > Thanks Rocky! > > It’s beginning to go away! > > hc > > Rocky <rrockslide…@earthlink.net

wrote in message

> > news:6hYPa.43505$C83.3448182@newsread1.prod.itd.earthlink.net… > > > Hey HC, hope you feel better.  I have had headaches come and go while on

treatment.  More fluids seemed to help me.  I make up a big jug of powdered Gatorade and drink it constantly.  Just need to find something you

like

in the liquid department.  Hope you get to feeling better.  I took shot 6 last night and feel okay today.  So there’s hope…Last week I thought I

was > > > going to die.  I felt horrible.  Good luck HC > > > — > > > Rocky > > > "hippiechik" <noca…@byebye.com

wrote in message

> > > news:vh07va7hpd3lea@corp.supernews.com… > > > > Please post  what you all do for these awful headaches. I can’t seem > to > > > > shake this on and I’ve had it for 24 hours straight. > > > > I have been taking Advil 600mg every 4 hours and I tried Benadryl > > > (thinking > > > > I would go to sleep and the headache would be gone) I am current on my

fluids and haven’t been sweating even though it’s hotter than hell here! Thanks in advance! hc (whining in Texas) Try something cold on your eyes, like a cold wash cloth. I used to

have

one of those gel packed things you put in the fridge for your eyes til it started leaking, worked great. It might not get rid of it but it makes it feel better while it’s on. Also, Excedrin works great, instant relief and

I

don’t think there is any acetimaiphen (sp) in it. Hope it’s gone by the time you get this.

 Thanks Mom! It’s almost gone and I’m feeling just very tired now. hc

Response:

Yep, Roy.  That’s a pretty good description of Spidey’s about the anemia.  Procrit does work well, you should discuss the symptoms with your doc at the earliest.  He should have your CBC results by now and if you’re starting to really beat, it’s time to ask him about Procrit.   It takes a few weeks for the stuff to be working in full stride.  It’s not as if you do the shot and the next day you feel like running a marathon.   Elmo http://community.webtv.net/elmoemerson/ABandisBorn http://community.webtv.net/elmoemerson/DocElmosHepFile

Response:

Thanks gang, don’t know what I’d do without y’all. When I can muster the strength to pick the damn thing up I’ll be straight on the phone to my csln.(We don’t have many bclds ’round here). Roy

Response:

VIOXX http://community.webtv.net/elmoemerson/ABandisBorn http://community.webtv.net/elmoemerson/DocElmosHepFile

Response:

"hippiechik" <noca…@byebye.com

wrote in message

news:vh125u11tpgle9@corp.supernews.com…

 Thanks Mom! It’s almost gone and I’m feeling just very tired now. hc

Hey HC, if you find ANYTHING that shifts the tiredness pleeease let me know. Roy

Response:

How are your RBC’s and thyroid doing, Roy?   Elmo http://community.webtv.net/elmoemerson/ABandisBorn http://community.webtv.net/elmoemerson/DocElmosHepFile

Response:

At the last count (two weeks ago), everything was at the low end of normal. Ihad another test on the 12th but don’t have the results yet. To be more accurate I don’t feel tired, I feel weak. Sleeping doesn’t help, often I don’t feel the need for sleep but my arms, legs and shoulders feel like they just loaded a couple of tons of coal. Anybody else get this? Roy <elmoemer…@webtv.net

wrote in message

news:15368-3F1279BE-159@storefull-2313.public.lawson.webtv.net… – Hide quoted text — Show quoted text -

How are your RBC’s and thyroid doing, Roy?   Elmo http://community.webtv.net/elmoemerson/ABandisBorn http://community.webtv.net/elmoemerson/DocElmosHepFile

Response:

Body fatigue coupled with insomnia is a condition I’ve been battling all through tx. I gave up on sleep aids a long time ago because of the grogginess and general malaise in the AM. I only took them when my peripheral neuropathy totally interfered with sleep. Weakness is a huge factor for me and evening brings restless leg syndrome. I also have pinching, burning and stabbing pains in my legs and feet from nerve regeneration, sometimes making it difficult to sleep. Lana "Scouse" <royjo…@yahoo.co.uk

wrote in message

news:3f1277db$1@news.star.co.uk… – Hide quoted text — Show quoted text -

At the last count (two weeks ago), everything was at the low end of

normal.

Ihad another test on the 12th but don’t have the results yet. To be more accurate I don’t feel tired, I feel weak. Sleeping doesn’t

help, > often I don’t feel the need for sleep but my arms, legs and shoulders feel > like they just loaded a couple of tons of coal. > Anybody else get this? > Roy > <elmoemer…@webtv.net

wrote in message

> news:15368-3F1279BE-159@storefull-2313.public.lawson.webtv.net… > > How are your RBC’s and thyroid doing, Roy?   Elmo > > http://community.webtv.net/elmoemerson/ABandisBorn > > http://community.webtv.net/elmoemerson/DocElmosHepFile

Response:

got it Roy. i tell people it feels like i have "lead weights" on my arms and ankles. i still get sleepy sometimes, but the weakness is all the time. gets worse when i go outside in the heat. my calves and ankles hurt a lot too. my bloodwork so far has held out at the low normal (or slightly below) . get update this week. Dez "Scouse" <royjo…@yahoo.co.uk

wrote in message

news:3f1277db$1@news.star.co.uk… – Hide quoted text — Show quoted text -

At the last count (two weeks ago), everything was at the low end of

normal.

Ihad another test on the 12th but don’t have the results yet. To be more accurate I don’t feel tired, I feel weak. Sleeping doesn’t

help, > often I don’t feel the need for sleep but my arms, legs and shoulders feel > like they just loaded a couple of tons of coal. > Anybody else get this? > Roy > <elmoemer…@webtv.net

wrote in message

> news:15368-3F1279BE-159@storefull-2313.public.lawson.webtv.net… > > How are your RBC’s and thyroid doing, Roy?   Elmo > > http://community.webtv.net/elmoemerson/ABandisBorn > > http://community.webtv.net/elmoemerson/DocElmosHepFile

 Posted Via Usenet.com Premium Usenet Newsgroup Services ———————————————————-     ** SPEED ** RETENTION ** COMPLETION ** ANONYMITY ** ———————————————————-                         http://www.usenet.com

Response:

Scouse <royjo…@yahoo.co.uk

wrote in message

news:3f125bf9$1@news.star.co.uk… > "hippiechik" <noca…@byebye.com

wrote in message

> news:vh125u11tpgle9@corp.supernews.com… > >  Thanks Mom! > > It’s almost gone and I’m feeling just very tired now. > > hc > Hey HC, > if you find ANYTHING that shifts the tiredness pleeease let me know.

Sure thing Roy! hc

Response:

<elmoemer…@webtv.net

wrote in message

news:15368-3F1279BE-159@storefull-2313.public.lawson.webtv.net… | How are your RBC’s and thyroid doing, Roy?   Elmo I’ll bet (Cdn) dollars to donuts that the homo goblins are heading south.

Response:

Scouse <royjo…@yahoo.co.uk

wrote in message

news:3f1277db$1@news.star.co.uk… | At the last count (two weeks ago), everything was at the low end of normal. | Ihad another test on the 12th but don’t have the results yet. | To be more accurate I don’t feel tired, I feel weak. Sleeping doesn’t help, | often I don’t feel the need for sleep but my arms, legs and shoulders feel | like they just loaded a couple of tons of coal. | Anybody else get this? Hey Roy, Oh yeah, I got that same thing, especially in the last three months of tx. I’d describe it like every movement I made felt like I was in water up to my neck, a real effort to move. Then the shortness of breath moved in, and my muscles would burn from the least bit of exercise. Brushing my teeth was a major physical effort. My nerves were so jangled that I couldn’t sleep for more than an hour or two at a time. Finally I asked for sleeping pills and that helped me sleep for up to four or five hours straight, whoo-hoo! The exhaustion was caused by anemia, and they never got around to giving me anything for that so I spent most of tx just lying in bed, or on the couch. Apparently Procrit and Neupogen are used successfully to treat anemia. You might be interested to know that the burning muscles and exhaustion faded rapidly after I finished tx. In other words, hang in there! Waterspider

Response:

Yo group, I think our medical community has differing opinions on what the word anemia means….. I am a male who started pre-treatment- hemoglobin over 17. ( I was told by someone that a drop of 25 % is considered anemic) Now as far as I am concerned, any levels (during treatment) below that makes me anemic. SO…….. If you are getting your blood done regularly, question every drop in your hemoglobin- You walk into the office, say hi ms/mr office manager….please make me a copy of my bloodwork, while I wait to see the doc…..Take out your file and do all your own comparisons instead of reading "Highlights"……. Then……. The Visit Heh doc I see my hemoglobin is at 12.6 ( or 13 or 14 or 6- it’s still anemia …gee I sure am tired and short of breath) ….then he goes into the symptoms how short of breath, mike? Then I go into my walking to the mailbox story….. pale skin (duh)? la de dah de da And he’ll mention how we need to watch these levels…doesn’t ribavirin suck?, he chuckles (in a nice way)   …….(meanwhile your next appt. isn’t for another 2-3 weeks)……. Then you suggest….Gee doc I have heard that Procrit can bring those levels up, and I won’t feel so fatigued, out of breath, and unable to work….and it works wonders for the millions of cancer chemo patients that take it daily…… Also, mention, you  have friends who had sucessfully improved their QOL during treatment by supplementing their ribavirin treatment with Procrit. (Elmo and me for instance) Procrit takes about 2 weeks (three shots) to really take effect. The first time I took it – when I quit working out , my hemoglobin was down to 10.6 ….i guess one could argue that that is "close to normal" for someone taking 1200 mgs of ribavirin. ahhhhhhhhhaaaaaa……I got back on it ( hemo at 12.6 ) after bitching like crazy, and believe me I can tell the difference- I don’t give a *f* what my hemoglobin level is Of course this is all in a fantasy world where we aren’t punishing us for being sick….. say nah have a nice day!! fonzz "Waterspider" <noapam@all

wrote in message

news:vh5p089pnpoo69@corp.supernews.com… – Hide quoted text — Show quoted text -> <elmoemer…@webtv.net

wrote in message

> news:15368-3F1279BE-159@storefull-2313.public.lawson.webtv.net… > | How are your RBC’s and thyroid doing, Roy?   Elmo > I’ll bet (Cdn) dollars to donuts that the homo goblins are heading south.

Response:

hippiechik <noca…@byebye.com

wrote in message

news:vh07va7hpd3lea@corp.supernews.com…

Please post  what you all do for these awful headaches. I can’t seem to shake this on and I’ve had it for 24 hours straight. I have been taking Advil 600mg every 4 hours and I tried Benadryl

(thinking

I would go to sleep and the headache would be gone) I am current on my fluids and haven’t been sweating even though it’s hotter than hell here! Thanks in advance! hc (whining in Texas)

I have a sinus infection so that has been giving me headaches. So now I’m on antibiotics. I feel like I take medicine all the time. hc (who use to only take vitamins)

Response:

"hippiechik" <noca…@byebye.com

wrote in message

news:vh125u11tpgle9@corp.supernews.com… – Hide quoted text — Show quoted text -> mom <m…@mom.net

wrote in message

> news:EL2dnUyVtp_2G42iRTvUqg@bedford.net… > > "hippiechik" <noca…@byebye.com

wrote in message

> > news:vh0u9pea2tcje4@corp.supernews.com… > > > Thanks Rocky! > > > It’s beginning to go away! > > > hc > > > Rocky <rrockslide…@earthlink.net

wrote in message

> > > news:6hYPa.43505$C83.3448182@newsread1.prod.itd.earthlink.net… > > > > Hey HC, hope you feel better.  I have had headaches come and go while

on treatment.  More fluids seemed to help me.  I make up a big jug of powdered Gatorade and drink it constantly.  Just need to find something you like in the liquid department.  Hope you get to feeling better.  I took shot

6 > > > last > > > > night and feel okay today.  So there’s hope…Last week I thought I > was > > > > going to die.  I felt horrible.  Good luck HC > > > > — > > > > Rocky > > > > "hippiechik" <noca…@byebye.com

wrote in message

> > > > news:vh07va7hpd3lea@corp.supernews.com… > > > > > Please post  what you all do for these awful headaches. I can’t seem

to shake this on and I’ve had it for 24 hours straight. I have been taking Advil 600mg every 4 hours and I tried Benadryl (thinking I would go to sleep and the headache would be gone) I am current

on

my fluids and haven’t been sweating even though it’s hotter than hell here! Thanks in advance! hc (whining in Texas) Try something cold on your eyes, like a cold wash cloth. I used to have one of those gel packed things you put in the fridge for your eyes til

it

started leaking, worked great. It might not get rid of it but it makes

it

feel better while it’s on. Also, Excedrin works great, instant relief

and

I don’t think there is any acetimaiphen (sp) in it. Hope it’s gone by the time you get this.  Thanks Mom! It’s almost gone and I’m feeling just very tired now. hc Then go to bed and get some rest. Glad it’s gone.

Mom

Response:

"hippiechik" <noca…@byebye.com

wrote in message

news:vh0u8rmrt3h3d4@corp.supernews.com… <snip

Thanks for all the great information. It’s going away but I feel like I

have

a hangover….. BLAH! hc

glad it’s letting up! yeah, they remind me of the hangovers i used to get from doing tequila shots. used to swear tequila was more drug than alcohol. lol Dez  Posted Via Usenet.com Premium Usenet Newsgroup Services ———————————————————-     ** SPEED ** RETENTION ** COMPLETION ** ANONYMITY ** ———————————————————-                         http://www.usenet.com

Response:

"hippiechik" <noca…@byebye.com

wrote in message

news:vh0u9pea2tcje4@corp.supernews.com… – Hide quoted text — Show quoted text -> Thanks Rocky! > It’s beginning to go away! > hc > Rocky <rrockslide…@earthlink.net

wrote in message

> news:6hYPa.43505$C83.3448182@newsread1.prod.itd.earthlink.net… > > Hey HC, hope you feel better.  I have had headaches come and go while on > > treatment.  More fluids seemed to help me.  I make up a big jug of > powdered > > Gatorade and drink it constantly.  Just need to find something you like in > > the liquid department.  Hope you get to feeling better.  I took shot 6 > last > > night and feel okay today.  So there’s hope…Last week I thought I was > > going to die.  I felt horrible.  Good luck HC > > — > > Rocky > > "hippiechik" <noca…@byebye.com

wrote in message

> > news:vh07va7hpd3lea@corp.supernews.com… > > > Please post  what you all do for these awful headaches. I can’t seem to

shake this on and I’ve had it for 24 hours straight. I have been taking Advil 600mg every 4 hours and I tried Benadryl (thinking I would go to sleep and the headache would be gone) I am current on my fluids and haven’t been sweating even though it’s hotter than hell

here!

Thanks in advance! hc (whining in Texas) Try something cold on your eyes, like a cold wash cloth. I used to have

one of those gel packed things you put in the fridge for your eyes til it started leaking, worked great. It might not get rid of it but it makes it feel better while it’s on. Also, Excedrin works great, instant relief and I don’t think there is any acetimaiphen (sp) in it. Hope it’s gone by the time you get this. Mom – Hide quoted text — Show quoted text –

Response:

Thanks Rocky! It’s beginning to go away! hc Rocky <rrockslide…@earthlink.net

wrote in message

news:6hYPa.43505$C83.3448182@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -

Hey HC, hope you feel better.  I have had headaches come and go while on treatment.  More fluids seemed to help me.  I make up a big jug of

powdered

Gatorade and drink it constantly.  Just need to find something you like in the liquid department.  Hope you get to feeling better.  I took shot 6

last > night and feel okay today.  So there’s hope…Last week I thought I was > going to die.  I felt horrible.  Good luck HC > — > Rocky > "hippiechik" <noca…@byebye.com

wrote in message

> news:vh07va7hpd3lea@corp.supernews.com… > > Please post  what you all do for these awful headaches. I can’t seem to > > shake this on and I’ve had it for 24 hours straight. > > I have been taking Advil 600mg every 4 hours and I tried Benadryl > (thinking > > I would go to sleep and the headache would be gone) I am current on my > > fluids and haven’t been sweating even though it’s hotter than hell here! > > Thanks in advance! > > hc (whining in Texas)

Response:

Hey HC, hope you feel better.  I have had headaches come and go while on treatment.  More fluids seemed to help me.  I make up a big jug of powdered Gatorade and drink it constantly.  Just need to find something you like in the liquid department.  Hope you get to feeling better.  I took shot 6 last night and feel okay today.  So there’s hope…Last week I thought I was going to die.  I felt horrible.  Good luck HC — Rocky "hippiechik" <noca…@byebye.com

wrote in message

news:vh07va7hpd3lea@corp.supernews.com… – Hide quoted text — Show quoted text -

Please post  what you all do for these awful headaches. I can’t seem to shake this on and I’ve had it for 24 hours straight. I have been taking Advil 600mg every 4 hours and I tried Benadryl

(thinking

I would go to sleep and the headache would be gone) I am current on my fluids and haven’t been sweating even though it’s hotter than hell here! Thanks in advance! hc (whining in Texas)

Response:

Perado Dez <Perado…@hotmail.com

wrote in message

news:3f103c0a_2@Usenet.com… – Hide quoted text — Show quoted text -> "hippiechik" <noca…@byebye.com

wrote in message

> news:vh0c0n5i2du229@corp.supernews.com… > > Thanks Dez! > > Do you think Soma is ok to take? > > How’s Strelsa doing! > > hc > i’ve never taken Soma (carisoprodol). i was doing some reading on it and > noticed it says to let your doc know if you have liver disease. also says > there are known side affects with zoloft. > http://www.integrarx.com/info/buy-carisoprodol.asp > i’m hesitant to take anything i haven’t taken on tx until i check with my > doc first. i know how frustrating it can be to find a doc on a weekend. and

when you’re hurting it doesn’t help. have you signed up for either of the care programs (scherring/roche) offer with tx? i signed up for the one scherring offers early on and have called them on weekends and evenings. they are rn’s so you may know as much as they do. but they may be able to offer some suggestions they have come across (i.e. using Soma with their products etc.) Scherrings Be in Charge program is: http://www.beincharge.com 1-888-437-2608 (pegintron/rebetol) Roche Pegassist program is: http://www.pegasys.com/resources/pegassist.asp 1-877-734-2797 (pegasys/copegasys) Strelsa is doing ok. she has her appts set up. i think she’s in the wait

and

see what they say stage. i catch her every now and then holding her side, but when i ask her if she’s hurting she gives me that stubborn look and says, no, i’m fine. she slept until after 11am which is very unusual. so

i’m

watching her close. thanks for asking.

Thanks for all the great information. It’s going away but I feel like I have a hangover….. BLAH! hc

Response:

"hippiechik" <noca…@byebye.com

wrote in message

news:vh0c0n5i2du229@corp.supernews.com…

Thanks Dez! Do you think Soma is ok to take? How’s Strelsa doing! hc

i’ve never taken Soma (carisoprodol). i was doing some reading on it and noticed it says to let your doc know if you have liver disease. also says there are known side affects with zoloft. http://www.integrarx.com/info/buy-carisoprodol.asp i’m hesitant to take anything i haven’t taken on tx until i check with my doc first. i know how frustrating it can be to find a doc on a weekend. and when you’re hurting it doesn’t help. have you signed up for either of the care programs (scherring/roche) offer with tx? i signed up for the one scherring offers early on and have called them on weekends and evenings. they are rn’s so you may know as much as they do. but they may be able to offer some suggestions they have come across (i.e. using Soma with their products etc.) Scherrings Be in Charge program is: http://www.beincharge.com 1-888-437-2608 (pegintron/rebetol) Roche Pegassist program is: http://www.pegasys.com/resources/pegassist.asp 1-877-734-2797 (pegasys/copegasys) Strelsa is doing ok. she has her appts set up. i think she’s in the wait and see what they say stage. i catch her every now and then holding her side, but when i ask her if she’s hurting she gives me that stubborn look and says, no, i’m fine. she slept until after 11am which is very unusual. so i’m watching her close. thanks for asking. Dez  Posted Via Usenet.com Premium Usenet Newsgroup Services ———————————————————-     ** SPEED ** RETENTION ** COMPLETION ** ANONYMITY ** ———————————————————-                         http://www.usenet.com

Response:

Perado Dez <Perado…@hotmail.com

wrote in message

news:3f102750_2@Usenet.com… – Hide quoted text — Show quoted text -> "hippiechik" <noca…@byebye.com

wrote in message

> news:vh07va7hpd3lea@corp.supernews.com… > > Please post  what you all do for these awful headaches. I can’t seem to > > shake this on and I’ve had it for 24 hours straight. > > I have been taking Advil 600mg every 4 hours and I tried Benadryl > (thinking > > I would go to sleep and the headache would be gone) I am current on my > > fluids and haven’t been sweating even though it’s hotter than hell here! > > Thanks in advance! > > hc (whining in Texas) > sorry to hear you’re still fighting the headaches. i haven’t had a problem > with them that a couple of tylenol hasn’t taken care of. it may not be much

help, but i’m glad to listen to you whine if it helps. i’ll keep you in my prayers as well that you can find something to stop them.

Thanks Dez! Do you think Soma is ok to take? How’s Strelsa doing! hc

Response:

Please post  what you all do for these awful headaches. I can’t seem to shake this on and I’ve had it for 24 hours straight. I have been taking Advil 600mg every 4 hours and I tried Benadryl (thinking I would go to sleep and the headache would be gone) I am current on my fluids and haven’t been sweating even though it’s hotter than hell here! Thanks in advance! hc (whining in Texas)

Response:

"hippiechik" <noca…@byebye.com

wrote in message

news:vh07va7hpd3lea@corp.supernews.com…

Please post  what you all do for these awful headaches. I can’t seem to shake this on and I’ve had it for 24 hours straight. I have been taking Advil 600mg every 4 hours and I tried Benadryl

(thinking

I would go to sleep and the headache would be gone) I am current on my fluids and haven’t been sweating even though it’s hotter than hell here! Thanks in advance! hc (whining in Texas)

sorry to hear you’re still fighting the headaches. i haven’t had a problem with them that a couple of tylenol hasn’t taken care of. it may not be much help, but i’m glad to listen to you whine if it helps. i’ll keep you in my prayers as well that you can find something to stop them. Dez  Posted Via Usenet.com Premium Usenet Newsgroup Services ———————————————————-     ** SPEED ** RETENTION ** COMPLETION ** ANONYMITY ** ———————————————————-                         http://www.usenet.com

Response:

Oddly enough, I also had terrible migraines before my liver disease was diagnosed.  Now, hardlly at all.  I believe it has something to do with the beta blockers I am taking for the portal hypertension, they lower my blood pressure from normal to 80/40 a lot of the time, and I believe that keeps the headaches from occuring, although it’s just a theory. – Hide quoted text — Show quoted text -StreetDancer wrote:

I had a history of migraines prior to being diagnosed with HCV. Once I went on treatment the first time I have had fewer and fewer migraines. I have a lot of other problems , but migraines are about once a year not. Beware of Imitrex and the liver though, if that’s what you take. Good Luck. Street Dancer On 02 Jun 2002 00:10:16 GMT, pib…@aol.com (Pibone) wrote: Does anyone out there know if headaches are a symptom of Hep C.  Would really appreciate some info one way or the other.

Response:

I had a history of migraines prior to being diagnosed with HCV. Once I went on treatment the first time I have had fewer and fewer migraines. I have a lot of other problems , but migraines are about once a year not. Beware of Imitrex and the liver though, if that’s what you take. Good Luck. Street Dancer On 02 Jun 2002 00:10:16 GMT, pib…@aol.com (Pibone) wrote: – Hide quoted text — Show quoted text -

Does anyone out there know if headaches are a symptom of Hep C.  Would really appreciate some info one way or the other.

Response:

Does anyone out there know if headaches are a symptom of Hep C.  Would really appreciate some info one way or the other.

Response:

i believe so. i have had the HCV for twenty years i suspect. well i first got these "cluster" headaches in 1983. every day, same time, for a month. i would be incapacitated by them. and they didn’t have IMMITREX or other anti migraine meds then. the next bout happened in ‘85, then not until ‘92. the most recent (knock wood) was when i lived in manhattan in 1996. i am convinced they are HCV related, as they were never linked to an allergy or my high blood pressure. scott

Response:

Thanks for the reply to my question.  My headaches are not incapacitating but they are non stop and accompanied by fatigue. What made your headaches go away? Richard

Response:

sorry to hear about your headache situation. they seem to come in cycles for me. i havent had a bout since ‘96 thankfully. i used the prescription drug Imitrex when i last had them. it had just come out on the market. scott

Response:

Imitrex has major negative effects on the liver and should be avoided. It’s in the package insert. My GP prescribed it for me but before I had it filled I called my Gastroenterologist who said to read the PI and then not use it. "Mr Big Stuff" <slyga…@bellsouth.net

wrote in message

news:FwyK8.6039$K2.601239@e3500-atl2.usenetserver.com… – Hide quoted text — Show quoted text -

sorry to hear about your headache situation. they seem to come in cycles for me. i havent had a bout since ‘96 thankfully. i used the prescription drug Imitrex when i last had them. it had just come out on the market. scott

Response:

Question:

Hello everyone.  This is maybe my third post and I have appreciated all of the responses that I received.  I am in dire need to make some sense out of what has happened to me and I am starting to learn that some patients may know some things that my doctors do not.  For this reason I look for ANYONE’S logical/sensible explanation so that I can put some issues to rest. THE PUZZLE –         My name is Greg.  I am a 30 year old white male and have always been very healthy both in body and mind.  On a Tuesday evening in December of 1996, my father found me on the floor of my living room, lying unconscious. My last memory was watching television 2 evenings prior to that – Sunday.  I worked as a school district counselor at the time and when I hadn’t reported to work for 2 days (something I would never do) my boss FINALY called my parents.  My father, a physician of all things, doesn’t even take me to the E.R.  He takes me ‘home’ for mom and himself to care for me.  During the 48hrs. of lost time (it is assumed – repeated gran mals) I had obviously ‘made my way about my house’  - this was evident in many ways – A table in the kitchen was knocked over, I had ’staggered ?’ around and also stepped on both my cats water and food bowls.  Yes, they were made of glass.  My feet were badly cut – could have used some stitches dad ?  - leaving a literal trail of blood showing that I had also walked upstairs during this time.  My tongue was grossly bitten and I had dislocated my shoulder.  I was in a funk.         While at Mom’s and Dad’s, they noticed that I was very hot.  Note – I also remember feeling so ‘clouded’.  My father said that when he first found me, I was not even being co-operative – this is not my nature.  My temperature was at 103.7.  A number I will never forget.  After 4 days of incredible fever and another gran mal at their house, it is FINALLY decided to take a blood sample up to lab.  The tests show an acute infection of Epstein Barr Virus(mononucleosis).  It is assumed that I caught this in an elementary school where I worked – I had not had any intimate contact in the previous 5 or so months.  (Okay, okay, a short dry spell).  Anyway,  I was sick with EB virus for 5 months.  The fevers greatly reduced but still painful and present.  I recovered and had returned to work, still not feeling quite right – but so happy to have no fever.  I then had another major gran mal … back to parents house.  This time I am see a neurologist who does a CT scan only, and puts me on Dilantin.  This guy is supposed to be an incredible neurologist but more tests were certainly warranted.         It just so happened that my mother, a physician also, fell ill with her second and final battle with kidney cancer.  The family agreed that we wanted her to be at her house and with family – NO hospice, and only one nurse who dressed the eventual bed sore.  My father who was ‘friends’ with my boss got me an extended leave – this way, we sisters, dad and I agreed that I could care for mom during the day and also live at their home for safety.  Mom fought it out for almost a year.  During this time I did the somewhat typical denial thing.  I don’t have epilepsy I remember thinking. I stopped my med’s twice and both times gran mals.  Okay, I now see I need to act.  I went to the number one rated epilepsy doctor in my tri-state area who works in one of the top 10 epilepsy centers in the country – Dr. French at the University of Pennsylvania.  She was great – aggressive and insightful.  CT scans, MRI, one of the two was done with some sort of injected die or something ?  I also was given a take home 72hr EEG. Findings were – spikes originating from the right front temporal lobe.  The scans, they said, showed an abnormality in the same area that was producing the spikes.  My diagnosis was Right front temporal lobe epilepsy –  Cortical Dysplasia was the technical term meaning ’slight scar’  They speculated that it was there since birth and that the infection of the EB virus caused complications – slight pressure on the brain that had allowed my threshold to be lowered to the point of requiring medicine.  I had two more seizures and was switched to 1200Mgs. of Tegretol.  3Mgs. of Klonopin were later added.         I am sure that some reading this can relate to how strange this all was for me.   I had gone from NEVER even seeing a seizure to eventually having one when while with a girl-friend one night that I didn’t sleep at my parents..  Talk about feeling like a reject.  I lost control of all bodily functions and was bleeding badly from the mouth.  She was so caring about it – she even tried to help, costing her a trip in the ambulance with me so that they could sew up her now badly bitten finger. (she had tried to put her hand in mouth- what a beautiful gesture – she only meant to help)  I later learned, no wallets, no clothes, and NO FINGERS !  I couldn’t continue a relationship, not like that.  She was a psychologist and insisted that it was not at all an issue with her – my self-esteem however, was gone … I had to take a break.   Mom eventually died and it is it is now close to a year later.  I have had a few seizures during this year which prompted me to take my doctor up on the pre-surgery testing.  What fun.  I just spent 9 nights and 10 days at The University Of Pennsylvania with an electrical box wrapped around my head the entire time.  I was tapered off of the Tegretol so slowly that it was not until the last 52 or so hours that I had finally had a 0 blood level.  I was however, kept on the Klonopin the entire time. The reason as some of you may already know, is that they are looking for my ‘typical’ seizure origin and that Klonopin withdrawal is very dangerous and the seizure it could cause would not show them what they were looking for.             So here is the kicker – After 9 days, a doctor that I didn’t even know, comes into my room and says that he had a look at my old films and interpreted them as not showing an abnormality that was significant enough to explain my seizure activity.  When I questioned this ( i was shocked ) he explained that he had seen abnormalities that small in many people who never suffer seizures.  So I am thinking – this as a Top 10 facility ?  Who is reading what ?    What are they now saying  ?  Also, during my entire stay, my EEG showed no spiking this time and I didn’t even have one aura let alone seizure.  They concluded that the abnormality in my case must be playing a role because the first EEG results they explained came from that very same area of the brain.  They stuck with the right front temporal lobe diagnosis.  They instructed me to go back on 1200 Mgs. of Tegretol but would like to stop using the Klonopin.  I am now removing the Klonopin a quarter milligram/day as instructed.             Here is where I need help and answers –                     Could the Klonopin have been enough to keep my brain from spiking during the monitoring  ?                      Can one have spikes sometimes but go ten days without any spikes ?                      I will buy the fact the thee EB virus caused my first couple of gran mals, but can anyone explain the ones that I had while I was healthy ?                      Finally, again, some may understand this, but I have not returned to the Tegretol.  It has been 5 days and I still feel okay. Does anyone think it is unwise to do this ?  I feel that I need to see if my body will still seize or not so I can peace with all that has happened.  I will remain off of the Tegretol until I seize or one of you gives me a reason that convinces me that I should.  I am not really scared of a gran mal, but fear that if I have one and it is discovered that my Tegretol level is still zero, I will lose regained trust from my father and sisters about whether or not I am being compliant.                       If anyone makes it to the end of this and has information to share . P L E A S E share.  I used to be a fully functional, in control and confident individual.  I have since been diagnosed with clinical depression( mom’s death didn’t help, but the diagnoses preceded that.)  I am tired of doctors and Tegretol and Klonopin  ……  I wish almost that if I were to have another gran mal … let it be the last, however, if my body shows me that it has stopped having seizures I will feel much better but will still wonder what the heck happened to me.  Thank-you to all who have kept reading. Sincerely, greg

Response:

GORDON’s COMMENTS HERE AND 3-4 Places thru Editted Text (Volumes 1 thru 7!)         May not be ‘Help’ but an Opinion about Tegretol. (I have used Tegretol CR/ controlled release/ for ~5 years.) There is a ‘warning’ on Healthwatch printout I get from (Canadian) Shoppers’ Drug Mart with Prescription that PROMPT WITHDRAWAL of Teg. wo. Dr. Supervision may produce ‘Rebound Seizures’. To try reduce amount of (Potentially Quietly Helpful Meds.) you may be putting Yourself at risk for some of these ‘Rebounds’. I’ve never DONE that, and am NOT a Doctor. You should speak to either your Pharmacist about above or your Doctor about alternate medications or ‘whether’ you should reduce levels w.o. his supervision. (Since MINE are ‘Controlled Release’, REbounds wouldn’t likely show up IN FULL for 4 or 5 days after last of Med’n left my system).         Since my last ‘trip’ to Emerg. included being unconscious for 3+ hours, I personally wouldn’t take that risk. An opinion, Gordon. gzed wrote:

Hello everyone.  This is maybe my third post and I have appreciated all of the responses that I received.  I am in dire need to make some sense out of what has happened to me and I am starting to learn that some patients may know some things that my doctors do not.  For this reason I look for ANYONE’S logical/sensible explanation so that I can put some issues to rest.<snip

 My name is Greg.  I am a 30 year old white male and have always been

very healthy both in body and mind.  On a Tuesday evening in December of 1996, my father found me on the floor of my living room, lying unconscious. My last memory was watching television 2 evenings prior to that – Sunday.<snip

 My tongue was grossly bitten and I had dislocated my shoulder.  I was in a

funk.         While at Mom’s and Dad’s, they noticed that I was

very hot.  Note -

I also remember feeling so ‘clouded’.  My father said

that when he first

found me, I was not even being co-operative – this

is not my nature.  My

temperature was at 103.7. major gran mal … back to parents house.  This time I am see a neurologist who does a CT scan only, and puts me on Dilantin.  This guy is supposed to be an incredible neurologist but more tests were certainly warranted.

  I don’t have epilepsy I remember thinking.

I stopped my med’s twice and both times gran mals.  Okay, I now see I need to act.  I went to the number one rated epilepsy doctor in my tri-state area who works in one of the top 10 epilepsy centers in the country – Dr. French at the University of Pennsylvania.  She was great – aggressive and insightful.  CT scans, MRI, one of the two was done with some sort of injected die or something ?  I also was given a take home 72hr EEG. Findings were – spikes originating from the right front temporal lobe.  The scans, they said, showed an abnormality in the same area that was producing the spikes.  My diagnosis was Right front temporal lobe epilepsy –  Cortical Dysplasia was the technical term meaning ’slight scar’,….there since birth and that the infection of the EB virus caused complications – slight pressure on the brain that had allowed my threshold to be lowered  I had two more seizures and was switched to 1200Mgs. of Tegretol.

<*******THE HIest DOSE OF TEGRETOL I WAS EVER ON WAS 2×400mgs for FAIRLY SEVERE TEMP

Lobe Ep./Gordon/********

3Mgs. of Klonopin were later

added.

   I had gone from NEVER even seeing a seizure to eventually

having one

when while with a girl-friend one night that I didn’t sleep at my

parents..  Talk about feeling like a reject.  I lost control of all bodily

functions and was bleeding badly from the mouth.  

  I have had a few seizures during this year which prompted me to

take my doctor up on the pre-surgery testing.  What fun.  

 I was tapered off of the Tegretol

so slowly that it was not until the

last 52 or so hours that I had finally

had a 0 blood level.  I was

however, kept on the Klonopin the entire time.

The reason as some of you may already know, is that they are looking for my ‘typical’ seizure origin and that Klonopin withdrawal is very dangerous and the seizure it could cause would not show them what they were looking for.             So here is the kicker – After 9 days, a doctor that I didn’t even know, comes into my room and says that he had a look at my old films and interpreted them as not showing an abnormality that was significant enough to explain my seizure activity.

 ****REST OF THIS IS MEDICAL/I have no input for/Gordon/*****   They stuck with the right front

temporal lobe diagnosis.  They

instructed me to go back on 1200 Mgs. of

Tegretol but would like to

stop using the Klonopin.  I am now removing the

Klonopin a quarter milligram/day as instructed.             Here is where I need help and answers –                     Could the Klonopin have been enough to keep my brain from spiking during the monitoring  ?   Can one have spikes sometimes but go ten days without any spikes ?

************Finally, again, some may understand this, but I have

NOT********* returned to the Tegretol.  It has been 5 days and I still FEEL okay.********** Does anyone think it is unwise to do this ?  I feel that I need to ********see if my body will still seize or not******** so I can peace with all that has happened.*****  

         ****(OR ‘AT Peace’-see my ‘rebound comment ABOVE’ /Gordon/*********  I

will remain off of the Tegretol until I seize or one of you

*******gives me a

reason that convinces me that I should.  I am not

really scared of a gran

mal, but fear that if I have one and it is

discovered that my Tegretol level

is still zero, I will lose regained

trust from my father and sisters about

whether or not I am being compliant.                       If anyone makes it to the end of this and has information to share . P L E A S E share.  I used to be a fully functional, in control and confident individual.

*********TIMES CHANGE/ You have ALSO/ may be TIME to also speak to a Clinical Psychologist or ? if you don’t get enough ‘referrals/contacts’ from THIS GROUP.****G.R

***

 I have since been diagnosed with

clinical depression( mom’s death

didn’t help, but the diagnoses preceded

that.)

 ********I am tired of doctors and Tegretol and Klonopin  ****           ****See ‘Psychologist’ comment above******……   I wish

almost that if I were to have another gran mal … let it be

the last,

however, if my body shows me that it has stopped having

seizures I will feel much better but will still wonder******* Thank-you

to all who have kept reading.**

**//It’s O.K., I had to read ‘The Illiad’ in College!:-

 

// (1)Speak to your Doctor or Pharmacist TODAY about RECOIL Seizures I inserted ‘in text (editted) above’. (2) STAY with this group, there are often Other links to seizure types, meds., other stuff –I’ve SEEN THAT ‘Rasmussens…’ before, it’s either an ‘out of use name for Complex Partial Seizures (maybe w. no discernable source or ?)’.  (3)Next post (although I DON’T know how to do it NOR do I want to Discourage ‘posts’) try keep 1st Post ‘under 12 pages’ . WE REALLY DO WANT ALL POSTS HERE, but I don’t know how many Megabytes my Server will ‘hold’ before it ‘times out’ (It’s NOT too Bright, as SERVERs go–it Thought Chivas Regal was a Boat!

Sincerely, greg

**********also trying to be helpful and Sincerely, Gordon.

Response:

SUMMARY REMINDER –    Looking for specific insight to –             Does the absence on ‘one-time’ present spiking mean that my brain WILL not spike again  ?  Can they just stop forever   ??             Does anyone know if the Klonopin alone could be responsible for controlling my seizures and spiking while my 10 days of being monitored  ??             Can anyone provide insight as to why I continued to have gran mals AFTER I was healthy from the EB virus  ??             Based on the doctors ‘wishy-washy’ findings, is it safe for me to conclude that Tegretol or any drug, is NO longer needed in my specific case  ? ?             Could the Epstein Barr have been enough to start seizures in a healthy adult body that had always been free of seizures  ?             Finally,  any insight as to how the doctors could interpret data SO differently that some doctors see Cortical Dysplasia while one read the film as showing only a minute abnormality ? (keep in mind – they were ALL reading the same films  ?  Thanks-again and Love to All –                                                                     greg

Response:

Hi Greg, With most of us not being docs, it is hard to give you exact answers, other than to hypothesize. I can tell you that from my own experience,  I have had several top neuros look at my eeg’s and video and come up with differing opinions.  The one thing that they do agree on is that because there are differing opinions, I need to be on medication.  This brings me to my point for you. Several years back, I was put in the hospital for monitoring.  The "specialist" decided that I wasn’t seizuring and sent me home on just a very minimal dose of Tegretol.   I ended up going into a very bad seizure cluster several days later and ended up back in the hospital.  The end result was they decided to put my meds back up and the seizures were brought under better control. I have heard that there are times when patients come in for monitoring, that nothing significant shows up or that they don’t have seizures at all, so your experience isn’t out of the norm.   In my non-medical opinion it seems quite reasonable that leaving you on the one medicine did help to keep you "quiet", so to speak.  It makes sense. If the doctors sent you home on medication, it is because they believe there is a good chance for you to have continued seizures.   With that being the case,  were I in your shoes,  I would continue to take the medication.   You don’t want to go chance going through status seizures.    You have grand mals, so you are dealing with the "big one’s"   you don’t want to chance continued grands. (or any other type) Why you had continued seizures after the EB had gone, is something you might want to ask your neuro.  It sounds like you get along with your primary neuro, so continue talking with her. If you had a Predisposition for seizures, already. (Based on the finding in the MRI),  then if something happens to bring down the seizure threshold, then yes,  an otherwise healthy person can start having seizures.   I began having the most seizures after  I took a medication that brought down my seizure threshold.  That threshold has never gone back up again.  Kind of like it just popped right on out. I hope this helps some for you.  Like I said above,  some of your questions need to be answered by your doctor.    I wish you luck and hope that you can get answers and get your seizures controlled.   It sounds like you have had a pretty rough time of it, the past couple of years.  Oh and one last thing, try not to be embarrassed by the seizures.  I know that is a hard one, even for me.  But if you are with caring individuals, who say they are not bothered by your seizures, accept their friendship.  They are the one’s who can give you support when things are rough, don’t turn that support away. Take Care,  Kathleen – Hide quoted text — Show quoted text -gzed wrote in message <7mqgm0$2s…@nntp5.atl.mindspring.net

… SUMMARY REMINDER –   Looking for specific insight to –            Does the absence on ‘one-time’ present spiking mean that my brain WILL not spike again  ?  Can they just stop forever   ??            Does anyone know if the Klonopin alone could be responsible for controlling my seizures and spiking while my 10 days of being monitored  ??            Can anyone provide insight as to why I continued to have gran mals AFTER I was healthy from the EB virus  ??            Based on the doctors ‘wishy-washy’ findings, is it safe for me to conclude that Tegretol or any drug, is NO longer needed in my specific case  ? ?            Could the Epstein Barr have been enough to start seizures in a healthy adult body that had always been free of seizures  ?            Finally,  any insight as to how the doctors could interpret

data

SO differently that some doctors see Cortical Dysplasia while one read the film as showing only a minute abnormality ? (keep in mind – they were ALL reading the same films  ?  Thanks-again and Love to All –                                                                    greg

Response:

           Does the absence on ‘one-time’ present spiking mean that my brain WILL not spike again  ?  Can they just stop forever   ??

No the absence does not mean it will never happen again. Yes it can just go away. But, once you have a seizure disorder it can always return given the right trigger. My first dr said once the brain learns to seize it likes to seize. But the longer it goes without seizing the more likely it is to  not seize. So the emphasis is put on stopping the seizures from occuring and this is why they will use potentially toxic drugs toward that end.

 Can anyone provide insight as to why I continued to have gran mals AFTER I was healthy from the EB virus  ??

Same as above. The brain learned to seize. The EB may not have been the cause but rather just a trigger. Once the brain learns to seize it develops other triggers.

           Based on the doctors ‘wishy-washy’ findings, is it safe for me to conclude that Tegretol or any drug, is NO longer needed in my specific case  ? ?

NO !!!

Could the Epstein Barr have been enough to start seizures in a healthy adult body that had always been free of seizures  ?

YES. Everyone with a seizure disorder has a seizure threshold and it is different for each person. PS: I’m no dr, just basing it on what I’ve learned over the years. donna

Response:

Hi Greg, **This is another third try to post a reply.  Hope it finally works** Didn’t get far into your posting before I made my putative diagnosis: TLE.  I also have TLE, and because my Dr. encourages us to attend his weekly (free) group session, I have learned quite a bit about TLE, as well as more about epilepsy.  I also have ADD, and have always had a gift for seeing what others do not see.  Some call this global thinking.  I had some similar experiences, and lost my job of 27 years teaching science (biology).  Don’t feel bad about your long posting.  I’m notorious for that.  Take your posting as a sign of a man who provides excellent descriptions for the reader, and who also has excellent analytical abilities.  You are not crazy, simply touched with the same curse that beset me. I was seriously depressed several times, and lost all hope of being able to function well enough to keep my job, and support my family.  I was misdiagnosed, and given wrong drugs, which eroded my cognitive abilities, and led to even more serious problems than you have been beset with. Another sign of your intelligence is your skepticism about your Drs. (including dad).  Many neurologists and psychiatrists (and most psychologists) know little about ADD, and a lot less about TLE.  I could tell you some interesting stories, but you don’t really need more to scare you!  Sufficit to say that you are smart enough to get some answers from people who although not licensed doctors, have life experiences that most so-called experts never had, and many of who could never truly understand. I had a head trauma from a bicycling accident which triggered my TLE.  My memory (which always sucked due to the ADD) got much worse.  I had learned ways of compensating for this, but I couldn’t undue incorrect diagnoses, and poor med choices.  I also couldn’t get rid of a feeling of impending doom.  My scientific, literate self tried to fight my demons, but therapy and meds didn’t help when those that supposedly knew, didn’t really know what they were dealing with. Enough about myself, just say that I have revealed enough for you to feel that I really do empathize with you. When I can, I read postings, and hope what I have learned the hard way can prevent the meltdown that I went through. Your careful and complete chronical of events leading to your situation have actually given me a hypothesis which may explain partially what may have led to the lowering of my seizure threshold.  I too have had Epstein-Barr, and slept for long periods of time when It was diagnosed years before my cycling accident.  I always thought that the Wellbutrin I was put on when I was hospitalized began my undoing.  Zyban (used for smoking cessation) is Wellbutrin under another name, and they warn potential consumers now in the commercials not to take it with a seizure disorder.  Oh well! Now to trying to help YOU. Your depression may be from the TLE, not from the untimely death of your mother.  Depression is NOT a diagnosis, as my brilliant (but eccentric) psychiatrist who knows more about TLE than probably most if not all neurologists.  You must get to the root cause of the depression, which takes a Dr. that is a good diagostician, as well as one who will take the time to get a goog history.  Your excellent detailing of your history probably helped with a correct diagnosis. To my knowledge, I have only had simple partial seizures. These can be small lapses in attention, where you can go into a brief staring spell.  Certainly much better than the gran mal’s that made a bloody mess of your tongue and life. Don’t be so sure of that!  At the end of my posting, I will include some notes taken from a presentation on TLE that my Dr. gave.  I’ve posted it several times before, as I suspect that many who have TLE are misdiagnosed, and go through life destroying events due to misdiagnosis & mismedication.  Be thankful that you may be at least probably diagnosed properly, although somebody may have guessed well as you don’t seem to have had the proper tests. EEG’s are almost worthless in diagnosing TLE.  I had a BEAM test (a kind of a highly computerized EEG), and a SPECT test.  The SPECT is the best test as it has the best chance of definitively providing evidence for TLE.  An MRI, a much more sophisticated test than a CT scan, is generally worthless in finding the locus of a seizure.  Unless a tumor, or onother physical problem is causing the brain to seize, these tools are according to my Dr. pretty much worthless.  Seizures are electrical in nature, and you can have a seizure like a simple partial seizure while having an MRI, and no one might ever know.  I am not familiar with a 72 hr EEG, because to my knowledge my Dr. doesn’t use it because the other tests are superior. I have been compliant with my Carbamazepine (Tegretol).  I don’t want to lose my driving priviledge, nor do I want to be responsible for an accident that might kill someone else. However, even though this drug is the "gold standard" treatment for TLE, the side effects are real, and can pose other problems.  My seizures caused me enough of a living hell, and I don’t wish to revisit that horror again.  So my advice to you is to become compliant.  The are many worse drugs than Tegretol.  My main side effect is somnolence (sleepiness), and some dysphasia (forgetting of some words when I want to use them.  My dosage is 2,400 mg/day – a very high dosage as warranted by my monthly bloodwork. Fortunately for me, my Dr. is one of the foremost authorities on meds (that is why I ended up seeing him in the first place).  My ADD warrants an Rx of a psychostimulant (I take Adderall) to counter some of these side effects.  I am also taking a very new med called Provigil which is approved for narcolepsy, but working very well for me.  My Dr. knows a lot about ADD also, so I feel confident in what he gives me.  Besides, I thoroughly read the inserts anyway as I will always be skeptical of Drs. & medicines for the rest of my life. Getting back to the cause of your probable TLE, have you had any head injuries (car accidents, falls, etc.) which rather than the E-B virus may have caused your TLE? I know a lot more about ADD than I do about epilepsy, so I will not in good conscience be able to be able to comment on some of your other questions, for now.  I know a lot about a number of psychtropic meds, but Klonapin isn’t one of them. My Dr. has patients on it, but I don’t remember what it is used for.  You conspicuously left that out, which may mean something (kinda like you may be embarrassed to say why you are taking it).  Maybe not, but you were very detailed about other things.  Or, maybe it ’s an "add-on" that makes the Tegretol work better?  I take a bit of Lamictal also, which helped my cognitive abilities to be restored after it was robbed by the high doses of Lithium prescribed for my so called bipolar disorder. You are asking some good questions, in the right place.  And believe it or not, there are people who read long posts. They can be the most interesting ones, and the easiest ones to feel that a non professional like myself, might be giving good advice.  Many of us have "been there, and done that", and are hear to help someone to avoid some of our worst experiences.  Hope I have helped a bit. PS – I just read both of the follow-up messages you have received so far.  Gordon’s reminded me of "kindling".  I don’t fully understand the biochemistry of the process, but in some individuals, stopping the Carbamazepine abruptly for a period of time can render the drug useless in its ability to help you when you begin it again.  Somewhere in the many articles I have received from my Dr., kindling is explained in detail.  Ask your pharmacist about this penomenon. THERE IS GENERALLY NO BETTER MED FOR TLE, AND YOUR ACTIONS MAY COMPROMISE THIS!  I have also been on Vaproic acid (Depakote), but had to stop it because it elevated the ammonia level in my blood.  Gordon gave you good advice! PPS – Know for your further reading pleasure, I include the notes about TLE that I mentioned above.  If You are located anywhere near central NJ, USA let me know, and I’ll invite you to group session.  *** BTW, it is late and I may be tired, but check out what Dr. Mueller says about Whole Brain Epilepsy, Gran Mal and Carbamazepine.  I hope this doesn’t apply to you!!! ***  Can I assume that you may have had a complex partial seizure? *********************************************************** This is a repost of some notes taken during a talk by a former researcher at NHI, professor at Princeton & Rutgers, and psychiatrist who is an expert in diagnosing TLE and other difficult to diagnose neurologic & psychiatric condidtions including seasonal disorder, currently in private practice in Princeton NJ: PETER S. MUELLER, MD EPILEPSY (with particular reference to TEMPORAL LOBE EPILEPSY) April 1998 There are two types of epilepsy: 1.      WHOLE BRAIN EPILEPSY includes GRAND MAL and PETIT MAL (carbamazapine is not helpful) II.     FOCAL EPILEPSY – especially TEMPORAL LOBE EPILEPSY There   are two types of TEMPORAL LOBE EPILEPSY: 1.      Secondary Grand Mal epilepsy – created by the spread of the focal seizures activity to the whole brain (80% of all grand mal seizures) 2.      PARTIAL SEIZURES, of which there are two types. A.      COMPLEX PARTIAL SEIZURES – these are readily accepted as an entity by judges, neurologists, and others, because they include: a stereotyped sequence (ictus) with auras, motoric symptoms (automatisms), and clear-cut unconscious episodes, after which person is sleepy and groggy, but then fully recovers.  The patients always are unconscious for a few minutes during the episode. Bad news for patient is limits on driving unless seizure free by medication for 12 months. Good news is that it is readily recognized (90% show on an EEG during an ictal episode). B.      SIMPLE PARTIAL SEIZURES – which are far more common but which are less easily … read more »

Response:

Do you use aspartame, a seizure triggering drug (NutraSweet/Equal, Spoonful).  #9 on the FDA report of 92 symptoms is memory loss.  It also triggers Epstein Barr and Chronic Fatigue Syndrome (they are different). Email h…@dorway.com for a map of the 500 pages on aspartame on www.dorway.com and the FDA report. Regards, – Hide quoted text — Show quoted text -Betty"gzed" <g…@mindspring.com

wrote: Hello everyone.  This is maybe my third post and I have appreciated all of the responses that I received.  I am in dire need to make some sense out of what has happened to me and I am starting to learn that some patients may know some things that my doctors do not.  For this reason I look for ANYONE’S logical/sensible explanation so that I can put some issues to rest. THE PUZZLE –        My name is Greg.  I am a 30 year old white male and have always been very healthy both in body and mind.  On a Tuesday evening in December of 1996, my father found me on the floor of my living room, lying unconscious. My last memory was watching television 2 evenings prior to that – Sunday.  I worked as a school district counselor at the time and when I hadn’t reported to work for 2 days (something I would never do) my boss FINALY called my parents.  My father, a physician of all things, doesn’t even take me to the E.R.  He takes me ‘home’ for mom and himself to care for me.  During the 48hrs. of lost time (it is assumed – repeated gran mals) I had obviously ‘made my way about my house’  - this was evident in many ways – A table in the kitchen was knocked over, I had ’staggered ?’ around and also stepped on both my cats water and food bowls.  Yes, they were made of glass.  My feet were badly cut – could have used some stitches dad ?  - leaving a literal trail of blood showing that I had also walked upstairs during this time.  My tongue was grossly bitten and I had dislocated my shoulder.  I was in a funk.        While at Mom’s and Dad’s, they noticed that I was very hot.  Note – I also remember feeling so ‘clouded’.  My father said that when he first found me, I was not even being co-operative – this is not my nature.  My temperature was at 103.7.  A number I will never forget.  After 4 days of incredible fever and another gran mal at their house, it is FINALLY decided to take a blood sample up to lab.  The tests show an acute infection of Epstein Barr Virus(mononucleosis).  It is assumed that I caught this in an elementary school where I worked – I had not had any intimate contact in the previous 5 or so months.  (Okay, okay, a short dry spell).  Anyway,  I was sick with EB virus for 5 months.  The fevers greatly reduced but still painful and present.  I recovered and had returned to work, still not feeling quite right – but so happy to have no fever.  I then had another major gran mal … back to parents house.  This time I am see a neurologist who does a CT scan only, and puts me on Dilantin.  This guy is supposed to be an incredible neurologist but more tests were certainly warranted.        It just so happened that my mother, a physician also, fell ill with her second and final battle with kidney cancer.  The family agreed that we wanted her to be at her house and with family – NO hospice, and only one nurse who dressed the eventual bed sore.  My father who was ‘friends’ with my boss got me an extended leave – this way, we sisters, dad and I agreed that I could care for mom during the day and also live at their home for safety.  Mom fought it out for almost a year.  During this time I did the somewhat typical denial thing.  I don’t have epilepsy I remember thinking. I stopped my med’s twice and both times gran mals.  Okay, I now see I need to act.  I went to the number one rated epilepsy doctor in my tri-state area who works in one of the top 10 epilepsy centers in the country – Dr. French at the University of Pennsylvania.  She was great – aggressive and insightful.  CT scans, MRI, one of the two was done with some sort of injected die or something ?  I also was given a take home 72hr EEG. Findings were – spikes originating from the right front temporal lobe.  The scans, they said, showed an abnormality in the same area that was producing the spikes.  My diagnosis was Right front temporal lobe epilepsy –  Cortical Dysplasia was the technical term meaning ’slight scar’  They speculated that it was there since birth and that the infection of the EB virus caused complications – slight pressure on the brain that had allowed my threshold to be lowered to the point of requiring medicine.  I had two more seizures and was switched to 1200Mgs. of Tegretol.  3Mgs. of Klonopin were later added.        I am sure that some reading this can relate to how strange this all was for me.   I had gone from NEVER even seeing a seizure to eventually having one when while with a girl-friend one night that I didn’t sleep at my parents..  Talk about feeling like a reject.  I lost control of all bodily functions and was bleeding badly from the mouth.  She was so caring about it – she even tried to help, costing her a trip in the ambulance with me so that they could sew up her now badly bitten finger. (she had tried to put her hand in mouth- what a beautiful gesture – she only meant to help)  I later learned, no wallets, no clothes, and NO FINGERS !  I couldn’t continue a relationship, not like that.  She was a psychologist and insisted that it was not at all an issue with her – my self-esteem however, was gone … I had to take a break.   Mom eventually died and it is it is now close to a year later.  I have had a few seizures during this year which prompted me to take my doctor up on the pre-surgery testing.  What fun.  I just spent 9 nights and 10 days at The University Of Pennsylvania with an electrical box wrapped around my head the entire time.  I was tapered off of the Tegretol so slowly that it was not until the last 52 or so hours that I had finally had a 0 blood level.  I was however, kept on the Klonopin the entire time. The reason as some of you may already know, is that they are looking for my ‘typical’ seizure origin and that Klonopin withdrawal is very dangerous and the seizure it could cause would not show them what they were looking for.            So here is the kicker – After 9 days, a doctor that I didn’t even know, comes into my room and says that he had a look at my old films and interpreted them as not showing an abnormality that was significant enough to explain my seizure activity.  When I questioned this ( i was shocked ) he explained that he had seen abnormalities that small in many people who never suffer seizures.  So I am thinking – this as a Top 10 facility ?  Who is reading what ?    What are they now saying  ?  Also, during my entire stay, my EEG showed no spiking this time and I didn’t even have one aura let alone seizure.  They concluded that the abnormality in my case must be playing a role because the first EEG results they explained came from that very same area of the brain.  They stuck with the right front temporal lobe diagnosis.  They instructed me to go back on 1200 Mgs. of Tegretol but would like to stop using the Klonopin.  I am now removing the Klonopin a quarter milligram/day as instructed.            Here is where I need help and answers –                    Could the Klonopin have been enough to keep my brain from spiking during the monitoring  ?                     Can one have spikes sometimes but go ten days without any spikes ?                     I will buy the fact the thee EB virus caused my first couple of gran mals, but can anyone explain the ones that I had while I was healthy ?                     Finally, again, some may understand this, but I have not returned to the Tegretol.  It has been 5 days and I still feel okay. Does anyone think it is unwise to do this ?  I feel that I need to see if my body will still seize or not so I can peace with all that has happened.  I will remain off of the Tegretol until I seize or one of you gives me a reason that convinces me that I should.  I am not really scared of a gran mal, but fear that if I have one and it is discovered that my Tegretol level is still zero, I will lose regained trust from my father and sisters about whether or not I am being compliant.                      If anyone makes it to the end of this and has information to share . P L E A S E share.  I used to be a fully functional, in control and confident individual.  I have since been diagnosed with clinical depression( mom’s death didn’t help, but the diagnoses preceded that.)  I am tired of doctors and Tegretol and Klonopin  ……  I wish almost that if I were to have another gran mal … let it be the last, however, if my body shows me that it has stopped having seizures I will feel much better but will still wonder what the heck happened to me.  Thank-you to all who have kept reading. Sincerely, greg

Response:

hi greg ; # 1 get back on tegretol ! if doc says so never down grade ur self and the answer to y u had the seizures is because a person who has  epilepsy is more likely to get more seizures when they have a virus in them like u did and the answer of the klonopin when i went through sleep eegs i was winged off all medicines and at the time was taken klonopin also did u go for a pet scan also it is stronger than a MRI EVERY time i went in i never seizied also but they can tell just by the spikes i would get another opion i;ve been to clevend ny florida to see if i can get operated on all say the same so now i went for the vegal nerve stimulator i;ve had epilepsy for 24 years i;m 34 now so belive me i know what u r going through i got worset also when my dad died at sisters wedding of a heart attack if i were u i go to get another opinion ….chris

Response:

Dear Greg, You have been through a tough time…I am sorry, nothing anyone of  us says can make that better. I have left frontal lobe epilepsy which originates in a tiny scar which they feel was caused at birth (my mother was in labour for over 30 hours!).  The seizures only started after our arrival in South Africa. I had been given all the necessary vaccinations for the trip and my parents told me that I reacted badly to them, developing high fever, etc.  The theory is now that they caused a meningitis that went undiagnosed or treated and this lowered my threshold ….. hence the seizures a few months later at the age of three.  I am now 53, so you can understand that medicine had not made the advances that it has today. My epilepsy was really bad as a kid, but looking back now I realize that one of the problems was my parents inability to accept the fact that I was epileptic. I was carted from doctor to doctor and none of the medications were give a chance as they would take me off them the moment they noticed that I became a little duller of slower than usual.  Epilepsy was something to be ashamed of then and they battled to get me accepted by a normal school …. had they not fought so hard and found a private school run by nuns, to take me, I would have ended up in a special school for the metally retarded!! I am not sure how others in this group feel, but personally, my life became easier once I left home and was free to face and accept my epilepsy without feeling guilty about letting anyone down.  Epilepsy is a terrible blow to ones self image and sense of self worth … THAT is the most serious "side effect" that I have had to deal with.  Periodic depression also seems to come with the territory. When I left home I decided that I would no longer try to hide my condition and made of point of warning potential friends about the seizures and what to do if I had one.  A dear friend at university nearly lost his finger trying to help me <LOL

 

I accepted the need for medication and have learned to cope with side effects. Perhaps my greatest "handicap" has been that epilepsy is such an invisible thing, most of the time, and that I was so "normal" between seizures.  This meant that my parents, especially my mother, never really understood that there were days where just being, was an effort.  I have been labelled "lazy" and a "cold fish" and "difficult" and, and, and….. I am none of those, I am just a person with epilepsy who struggles with depression that can’t be explained, who has "off days" when everything is an effort, who has dreadful feelings of guilt and of not being good enough, pretty enough, clever enough, perfect enough….. Here I have found people who understand all this… just as you will.  All the emotions that you are going through are quite normal… just don’t beat yourself up about them.  The first step is to stop regarding the way you were as "normal" and your present condition as "abnormal"…. Your normallity has just changed a little. I would encourage you to make your neurologist your "partner" in developing a your new modus vivandi. Best wishes, Dorothy

Response:

Question:

Mrs Bug, I’ve been using DHEA for about three years now and had good success with it. I am 60 and a male therefore I use 50 mgs. Middle aged women sometimes take 25 mgs and some women willing to risk a beard or under a doctor’s supervision take 50 also. I got my guidance from the Regelson book "The Super Hormone Promise" and I think his advice is working. I am a very healthy and active 60 year old who has the energy of a 45 year old. DMAE is a brain drug, but since you spelled it DMEA (sic) it might not be working well for you <smile.  In testing 1200 mgs per day was used in Europe. I also believe in brain hormones but I use Pregnenolone instead of DMAE.  I get tired in the afternoons too but a cup of coffee or a nap (that’s the best) work wonders for me. The other hormone I have been using is Melatonin. The combination of Melatonin, DHEA and Pregneneolone have two powerful effects: antiaging and libido enhancement. I will let you know in ten years how the antiaging is working but my libido is what it was when I was younger (my girlfriend will be 40 next month …. kidding of course … I’m married).  I would suggest the Regelson book, Amazon is selling it for $2.99 this week.  See you on the dance floor … John B

I really like the energy I feel when I take DMEA and DHEA. I only take them in the morning. By late afternoon, I am so tired. I want to take more but I’m not sure how much I should take. What are the symptoms of overdoing this

stuff?

Response:

I really like the energy I feel when I take DMEA and DHEA. I only take them in the morning. By late afternoon, I am so tired. I want to take more but I’m not sure how much I should take. What are the symptoms of overdoing this stuff?

Response:

Question:

the post on neurontin is the reposting  of an FAQ from a doctors  web site. there is also a FAQ posting on Lamictal. they are in: alt.support.depression.manic soc. support. depression. manic james just put them up a week ago. regards, snowtree

Response:

Does anyone know of the effects of Neurontin on pregnancy( unborn baby).  Has anyone had a baby on this medicine.  I am very curious because I take this med. and want to have a baby.            Thanks -Tammy

Tammy, look in the newsgroup alt.support.depression.manic and theres *should* still be a post on Neurontin it comes up 2 times a month its a long post I forget what the title is.  It tells All you want to know about it, its a repost by James Milton.  It *might* tells the effects on pregnancy.  I hope this helps our do a search on the web on Neurontin or Gabapentin its the same thing. Betsy

Response:

writes Simple.   Don’t.   Pregnant women should not put anything in their bodies that does not  HAVE  to be there.

This is a bit of a simplification, Yes it would probably be best for a fit and healthy woman not to take any drugs during pregnancy, but it can be differant for someone who’s ill.  If the doctors consider that the dammage caused to the baby by taking a drug will be lower than the dammage caused by the depression (and associated anxiety etc.) then its probably a good idea to take the pills.  Speak tot he doc about it. — Mog "Life, I suppose, will simplify.  In one way or another"

Response:

writes Simple.   Don’t.   Pregnant women should not put anything in their bodies that does not  HAVE  to be there.

Like guilt and anxiety? —          The opinions given above may be mine. They might also            just be what I feel like saying right now, okay?

Response:

Simple.   Don’t.   Pregnant women should not put anything in their bodies that does not  HAVE  to be there.                                 Qs (Through shouting now, Still Newbie)

Response:

Does anyone know of the effects of Neurontin on pregnancy( unborn baby).  Has anyone had a baby on this medicine.  I am very curious because I take this med. and want to have a baby.            Thanks -Tammy

Response:

yes…i take it and i like it..it is a mood stabalizer…not really an anti-depressant…but it does help you feel better…i use it to treat my manic-depression…i have a lot of ups and severe downs and it helps stabalize my moods…so that i am on more of a normal level and not so "high" or "low"…….do you have manic-depression???….

To hear me ..click here!!!

To hear my wonderful Husband..clickhere

My Slam Book!!!!

|

I am currently:

Response:

I have about 4 months worth of experience with it.  It didn’t do much for me—-a few highs, alot of lows—–ended up on 1800 mgs a day that was like popping candy. What I do know is that some people have gone as high as 8-9,000 mgs a day (yuck). You have to space out your doses because the drug is secreted through your kidneys quickly—no damage or need to keep a check of them (kidneys).  It just makes you have to go a little more. You can not OD on Neurontin.  Word of caution though—–at higher doses you can certainly knock yourself out and cause neuro damage. I am a twitching idiot on that subject.  Tried to OD with over 8-9,000 of Neurontin and tons of other stuff—-but more of IT then anything else. Not good. Two months later and I am having some muscle twitches I think might be called mucscle dystonia or seizures.  I also have terrific migraines with this and blurred vision. I have heard good things though from others and some have said that it surpressed their appetite. Take care—-and I hope it works for you. btw—–this is a new med that has not been approved yet for use in depression only seizures. Guinea pigs RULE!  (that is us) WWNN

Response:

Yes, I’m taking it too. It seems neurotin started out as anti-convulsant.  But, the drug has many uses. It was my neurologist that prescribed it for me, because of nerve pain.  He knows I’m being treated for depression and did tell me that it could that also. I do take effexor as anit-dep. I was told to gradually increase my dose.  I can get up to 1500 mgs a day taken 3x a day. The first 3 -4 days the stuff made me feel like was slightly high, gave me a case of giggles.  Now, thats a side effect I wanted to keep!  When I got up 1200 mgs, I flound couldn’t tolerate a larger does because it caused vertigo & dissocaition.  sorry, i can’t help more lynn

Response:

My M.D prescribed me Neurontin for my depression. I have tried probably every anti-dpressant drug from the PDR. This one seems to work. Does anyone have experience with this drug. Thank you. Phil

Response:

I see these messages sporadically in different newsgroups and I’m starting to think that they are some sort of CIA conspiracy. There’s obviously some type of "code thing" going on here but I don’t get it.

– Hide quoted text — Show quoted text –      What will Neurontin do for my jugs?      I’ve got a pair of udders– I’m no spring chicken, you know– and I was hoping that Neurontin might make my cans perky and bouncy like they used to be– and my ass real high and inviting to huge dong.      My boyfriend used to love to spontaneously spread my ass and ride me in the kitchen it was so beautiful.  He also enjoyed hot tittyfuck sessions replete with ribbons of warm gooey splooge, but now that I sag, no more hot times in the bedroom for Myrt!      So, will about supertherapeutic doses of Neurontin help my jugs?      I love you all dearly, Myrtle Perdie Born and Raised a Southern Gal! 1.  Fuck Elavil– let’s JAM on SSRIs 2.  SELECT CELEXA!!! 3.  You’re zany on Xanax! 4.  My daughter’s name is Parnata, my son’s Nardilly, and my hermaphrodites is MarahPlanna bi! Before you buy.

Response:

     What will Neurontin do for my jugs?      I’ve got a pair of udders– I’m no spring chicken, you know– and I was hoping that Neurontin might make my cans perky and bouncy like they used to be– and my ass real high and inviting to huge dong.      My boyfriend used to love to spontaneously spread my ass and ride me in the kitchen it was so beautiful.  He also enjoyed hot tittyfuck sessions replete with ribbons of warm gooey splooge, but now that I sag, no more hot times in the bedroom for Myrt!      So, will about supertherapeutic doses of Neurontin help my jugs?      I love you all dearly, Myrtle Perdie Born and Raised a Southern Gal! 1.  Fuck Elavil– let’s JAM on SSRIs 2.  SELECT CELEXA!!! 3.  You’re zany on Xanax! 4.  My daughter’s name is Parnata, my son’s Nardilly, and my hermaphrodites is MarahPlanna bi! Before you buy.

Response: