Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

Really struggling on Gabapentin/Tegretol experiences?

Hi, everyone.  I have been having a rough few weeks since upping my Gabapentin dosage to 900mg.  It is aggravating my epilepsy and causing mood instability.  I feel very flat and uninterested in things that used to interest me.  I don't even talk much any more.  I feel teary-eyed a lot.  I've gained weight on Gabapentin, too, and I don't even eat very much--that alone can make a girl cry! It's too bad, really, as this dosage has provided 100% pain relief.

I'm supposed to wean off of it and start taking Tegretol tomorrow, but I am so afraid of a new set of side-effects.  I couldn't bear to gain another pound.  I am seriously considering trying to make a go of it without any meds.  Pretty sure that plan is guaranteed to fail since I can feel a "livewire" nerve along my cheekbone if I rest my hand on my face when lying down at night.  I wish this stupid situation would just GO AWAY.  Geez, now I'm crying again.

Do you have any experiences with Tegretol to share?  Anybody lose weight on it???

 

Christi

Views: 4439

Reply to This

Replies to This Discussion

I tried Gabapentin same dosage and couldn't really function got the pain to go away but then I couldn't carry on with a halfway normal day, I also tried Tegretol,  while I didn't experience any major side effects it did make me "cry" and be sad on it, everyone is different, and you will know if the Tegretol works or not pretty quickly, It didn't make me pain free just sad, not saying this to discourage you, just letting you know what it did to me.  My doctor said it makes people lose weight, I didn't take it long enough probably to tell, but certainly I gained weight on the Gabapentin I tried and the Lyrica I tried was a huge weight gainer.  Good luck, I get you saying you want to try it with nothing, I'm just about there, so frustrated of with pain, and side effects of meds, I just started Tramadol so we will see.......thinkin of you....

Kathy

 

Tegretol wasthe first drug they put me on. Worked like a charm
For maybe 3 year. Complete pain relief. Noticed dulling of brain 
And word finding problems. Sorry but gained weight. After 3 years
Drug stoped working. Had gamma knife then Mvd. Bad ending because 
ended up numb and pain more severe. Now on 2400 mg neurontin
I'm brain dead in a stupor, the walking dead. Neurontin to me is much
Better than tegretol. Blood test with tegretol and it can be dNgerous. 
Neurontin is a cleaner drug. HAng in there. . 

Hi all,

 

I read in admiration when someone says they are having a "pain-free" day!  Haven't had one of those in some time!  Oh, maybe an hour here and there, but then I go and do something stupid (like brush my teeth, eat, talk, drink something hot/cold) and then the pain flares up again!  still waiting for the glycerol injection to kick in!

 

Why can't the drug companies find something for us TN sufferers??  I'm sure if our numbers were greater, they would!!

 

 

Chronic neuropathic pain is arguably the most grossly under-funded issue in the US NIH research projects agenda.  Efforts are being made to increase funding, but the science is still a terribly long way from understanding the pertinent neuro-chemistry.  There appear to be over 20 genetic changes  in the blood stream resulting from chronic intense pain.  That's a huge number of factors to sort out and assess as targets for any medication treatment regime.  The interactions are not yet understood. 

I wish I could offer better news.  But it's going to be a long, slow slog, from all outward appearances.  I will try to publish research results in discussions here from time to time. 

Go in Peace and Power

Red

I think "Red" nailed it! everyone has different reactions to any sort of medication..If  something doesn't feel right then don't be afraid to ask for something different....I went through 3 different medications before I found what worked best for me ( Trileptal ) so try different kinds and no worries you will find something that works for you. Have hope.
Hey Christi,

I am on low doses of Tegrotol but am now pain free ALMOST all of the time. Side effects, ummmm, hard to say because of the morphine, and all the other meds I use. When I first began having pain months ago I was in pain 24/7 and it was the most severe pain I could have ever imagined. I had even talked about suicide with my husband and family telling them that I just could not deal with this pain and slowly it began to work, easing my pain more and more every day and I am only taking 200mg twice a day. So definitely give the Tegretol a good try!! Good luck dear,

Ali

Hi Christi - have to say that when I was first diagnosed, the tegretol worked like a charm.  No weight gain, no side effects (maybe a little difficulty in finding the words I wanted, but I initially attributed that to getting older - I'm 67), then since I was feeling so good, I bought a pack of chewing gum and boy, the sh-- hit the fan!  Within days, the pain was back.  I could not believe it!!  My neurologist put me on neurontin - gradually increasing the doses, and within a couple of weeks I had the glycerol injection on June 28.  Still having pain -- all three varieties:  aching, burning and sharp shooting pains.  The doctor's nurse said to take 400 mg of neurontin at bedtime and I can gradually increase the neurontin (I am on 1,000 mg now).  This is to a person who never so much took an asprin!!!

 

I know the sensation of feeling a "livewire" -- sometimes I hear a buzzing like I have a bee in my brain!  Christi, I don't know what the answer is -- I never dreamed this could happen to me (I'm sure this is your worst nightmare as well).    What can I say -- is there an answer???

 

All we can do is get through each day.

 

Paula

Red, I agree with your comments.   I am fairly new at this condition.  Have had it for a little over a year.  From what I read from all the posts, so many variations of this condition!  And since it is a fairly rare illness, little research is being done to cure/control TN.  My heart breaks for the young people who have it!  At least I was in my mid-60's when I got it.  But it's so depressing to think that I have to live the rest of my life with it.  What a life-altering change!

 



Paula said:

Hi Christi - have to say that when I was first diagnosed, the tegretol worked like a charm.  No weight gain, no side effects (maybe a little difficulty in finding the words I wanted, but I initially attributed that to getting older - I'm 67), then since I was feeling so good, I bought a pack of chewing gum and boy, the sh-- hit the fan!  Within days, the pain was back.  I could not believe it!!  My neurologist put me on neurontin - gradually increasing the doses, and within a couple of weeks I had the glycerol injection on June 28.  Still having pain -- all three varieties:  aching, burning and sharp shooting pains.  The doctor's nurse said to take 400 mg of neurontin at bedtime and I can gradually increase the neurontin (I am on 1,000 mg now).  This is to a person who never so much took an asprin!!!

 

I know the sensation of feeling a "livewire" -- sometimes I hear a buzzing like I have a bee in my brain!  Christi, I don't know what the answer is -- I never dreamed this could happen to me (I'm sure this is your worst nightmare as well).    What can I say -- is there an answer???

 

All we can do is get through each day.

 

Paula

Paula,

One bit of light at the end of the tunnel (or maybe part way there).  Recent epidemiological studies in the UK and Netherlands have revealed that the incidence of neuropathic face pain is possibly between 2.5 and 4 times more common than previously believed from studies done in Rochester NY in the early 1980s.  Instead of 4 new cases per hundred thousand per year, medical science now acknowledges more like 12 to 21 cases per hundred thousand. 

Likewise, when I first began working on websites for the the Trigeminal Neuralgia Association in 1997, the number of Web documents containing the term "Trigeminal Neuralgia" was about 3,600.  This morning, a search at google revealed 1.9 MILLION such documents.  Thus the visibility of this disorder has practically exploded.  People who search google for terms such as "pain on one side of my face" are frequently routed to my personal website.  The three most often visited articles on the site which deal with chronic neurological face pain, between them receive over 1,000 readings every month.  The Trigeminal Neuralgia Association website receives over 30,000 visits per month. 

Now what we need to do is turn those statistics into commitments of research money.  And there are several patient-run foundations active in just that attempt.  If I'm recalling correctly, the Myelin Repair Foundation has received millions of dollars in donations during the past five years, and now has at least three new therapies nearing the stage of human trials.  For a review of their research results, you may visit http://www.myelinrepair.org/myelin_repair/the_progress.shtml

Regards and best all...

  Red

Gabapentin really threw me for a loop.  I need it for neuropathy, and it took me 3 whole months to get up to a high enough dosage to make my feet feel a little better.  My gabapentin dose was very difficult to master and was tricky to begin with.

Hi Christi

I had liver failure after just 6 weeks on Tegretol. One of 1 in 15,000,000 (million) to have such an adverse reaction. Oh, lucky me!! I had a the life threatening rash as part of the reaction to this drug, the rash is something they term "Stephen Johnson" syndrome. Very sucky thing because the drug was actually making some impact on the nerve pain.
I spent weeks in hospital.
I'm now take Gabapentin - I agree, and do believe it is the poor cousin of the drug world when it comes to this particular condition.

I take a medley of drugs and one of them is Gabapentin and my dose is 600mg 3 times per day, I can say, yes, it is working but not as well as the Tegretol did (liver failure aside!).

Steph

Reply to Discussion

RSS

Help Us Help Others

Support Ben's Friends

Bens Friends

Does Your TN Pain Have You Considering Suicide?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

 

Ben's Friends is a peer-to-peer network

To get support, give support. 

Gift Store

© 2016   Created by BensFriends.org   Powered by

Badges  |  Report an Issue  |  Terms of Service