>
><<< This message is part 2 of a previous message >>>
>
>Jan S (form Ohio)
>
>In a message dated 2/17/98 9:15:22 PM, Jesaffer(AT)aol.com writes:
>
>>I have not wrtten for a while, but read the list daily!!
>>
>>Has anyone taken Tegretal for pain, burning, cramping, etc.? My Dr. has
>>prescribed this med. and there are a lot of side effects it can cause. The
>>Dr.
>>gave it to me for cluster headaches, but she said it could help with some
>>pain
>>occuring in TM (in my case, burning of the skin from time to time). Why
>>do
>>things have to be so complicated?? I have taken 100's of meds. for over
>>26
>>yrs. for these clusters and none of them have worked for very long.
>>
>>My TM started in Sept. 96. My case is not bad at all compared to most of
>>you.
>>I just have numbness and tingling in hands, feet and groin and feel cold
>>most
>>of the time, you know?. The burning started three months ago but only 3
>>- 4
>>time per week for 15 - 30 min. each. My (Spot!!) is in C-2. That I
learned,
>>is
>>high compared to most.
>>
>>I sure hope it can releave the clusters AND the TM pain.
>>
>>Thanks in advance for your replies and bless you all.
>>
>>Jan S (form Ohio)
>>
>
>Hi Jan....
>
>Yes, I take Tegretol for the burning......and have for years!!!! (have had
TM
>since 1981) It's a life-saver for me. Between that and Klonopin for the
>*jumpiness* and tightness, it helps a lot!!
>
>As for myself, I've never had any problem at all with the Tegretol. No
side
>effects whatsoever......except some sleepiness which is a combination of
them
>both.
>
>I take Tegretol 200 mg. four times a day.
>
>Hope it helps you!!! I have very frequent headaches, but the only thing
that
>seems to help them are Fiorinal. :-/ Wish I could throw all meds
>away......but guess it's better to be a bit more comfortable if they help.
>
>Linda
>
> I have this sensitivity to coldness too, i feel cold most of the day
>and need warm area around me.
>
> Does anyone has this sensitivity too?
>
> I would like to hear from you about it, maybe you have any ideas?
>
>Netta
>
>Netta Ganor wrote:
>>
>> Hello everyone,
>>
>> I don't have any sensation from the chest down (including hands), so
>> i don't suffer from burning, tingling, etc. and the numbness doesn't
>> bother me either,
>> but i just heard from my doc. that a drug called Lidocain is much
>> better than taking Neurontin and that it has much less side effects.
>>
>> I just thought it would help you... and maybe when i start to feel
>> my body again, i'll take them too....
>>
>> Netta
>Netta,
>
> Thanks for the tip about that other medicine! The whole reason we
>subscribed to this list, initially, was to see if there was another
>medicine besides gabapentin (neurontin)....having trouble with the side
>effects and the VA is saying that is all that is available besides
>baclofen. Thanks for the idea, you never know.
>
> Barb D. in Louisville
>
>Hello Jan,
>I was put on Tegretol for the first six months when I got TM. I was not
happy
>with it. I don't think it ever helped me. I did however get a bad side
affect
>of
>my heart pounding very hard at early times in the AM.
>I was finally taken off that when I saw a different doctor, but the meds he
>put me on don't work either. I have taken many kinds and have chosen to try
>and put up with the freez/burn pain at least for now.
>I hope it works for you. I know it has worked for some.
>Good Luck, and Best Wishes,
>Joel
>
>In a message dated 2/18/98 9:19:13 AM, neti1gn(AT)netvision.net.il writes:
>
>> I have this sensitivity to coldness too, i feel cold most of the day
>>and need warm area around me.
>>
>> Does anyone has this sensitivity too?
>>
>> I would like to hear from you about it, maybe you have any ideas?
>>
>>Netta
>
>Yes...most definitely!! Cold.....especially my feet.....even tho' they
don't
>*feel* cold for someone to touch them.
>
>Ideas? None other than socks, heat, blankets!! That's what I do!!
>
>Linda
>
>In a message dated 2/18/98 9:18:40 AM, barbd(AT)adept.net writes:
>
>>Netta,
>>
>> Thanks for the tip about that other medicine! The whole reason we
>>subscribed to this list, initially, was to see if there was another
>>medicine besides gabapentin (neurontin)....having trouble with the side
>>effects and the VA is saying that is all that is available besides
>>baclofen. Thanks for the idea, you never know.
>>
>> Barb D. in Louisville
>>
>
>Hi Barb!
>
>Tegretol would also be given in place of neurontin.
>
>Linda
>
>Netta, Jan H. here. I am cold on the outside
>from my waist down and never seem to get
>warm altho' I am more comfortable under the
>covers at night. My neurologist told me that
>the temperature control would likely not come
>back to "normal" and so far it hasn't.(April '96)
>The worst thing is the top of my body that in
>the summer months is totally hot and! sweaty!!
>
>How strange our bodies are. If I only knew
>before what I know now, I would have said thanks
>every day...How I can have burning and pain on the
>outside and be freezing on the outside is amazing
>to me--then along comes summer and I can add
>the sweaty heat to all these other feelings!!
>
>Hey, I don't mean to sound as if I'm complaining!!
>With the pain and burning has come more activity
>etc. and for that I am most happy.
>
>Anyway, Netta et al, I think the cold is here to stay.
>JanH
>
>Joel, Jan H here. I, too, have decided to
>put up with the pain and burning without
>any medication stronger than Tylenol Ex-
>Strength. I feel that I can tolerate what is
>happening now, and I don't know what the
>future holds as far as pain is concerned. My
>dr has agreed that this is good plan as long
>as I can tolerate it. I do have a high pain
>tolerance thus what I can take may be too
>much for others---this is such an individual
>disease!!
>JanH
>
>Thanks Linda. This is another aspect of TM and SCI in general.
> I HATE THE WINTER!!!!!!!!!!!!
>
> Netta
>
>Netta, Jan H here. I hate summer more--
>in the winter you can add clothing, blankets,
>etc. in the summer you can only take off
>so much!!! And with the loss of stomach
>muscles and 30 extra pounds, this no Miss
>America body is MUCH LESS SO!!!
>Jan H
>
>Lynn,
>
>Tkank you for this info. It will be very valuable!!
>