I am really concerned about the way I'm feeling but am not sure if its the tegritol or not. I'm hoping that you good people may be able to shed some light on it! I was on Gabapentin for about a year, proscriped by my GP. It worked well to start with but then petered off. I had an extremely bad attack and the GP gave me Tegrotel to take along side it. I only took one as I felt to dreadful that I couldn;t even walk let alone think or live. I stuck to the Gabapentin for a while longer then saw a Neurologist who told me to change from Gabapentin to tegrotel over a month. Now i'm only on Tegrotel. I feel horrible all the time. I can't think straight and my memory is so bad I forget what I'm doing when making a cup of coffee! I also have been having over whelming tiredness, some days I can't stay awake and spend nearly 24 hours sleeping. I also feel like i'm trembling inside all the time and doing little things that require a steady hand are really hard as i'm sort of jittery. Also my arms have been hurting with strong waving pain down then and my thumb is numb.
Any light you can shed would be very much appreciated .
get off that Tegretol. It is very, very bad for you. My doctors will not even prescribe it for me because it causes osteoporosis and decaying bones.
So there are a lot of natural alternatives; one is Neureton and the other is Trigical. These seem to help people. They are herbal with no side effects. Check the web and order them. Or just stay on Gabapentin. Also remember these 2 herbal supplements have been studied (according to their webpages) and one of the respondents in this forum said that the Neureton helped her for a couple of years. Be careful, this supplement, is not Neurontin the drug, but Neureton the herbal supplement. My doctor's clinic helped me to research Trigical too; one of the ingredients was listed in an ancient 17th Century medical journal from Ireland as being effective for Trigeminal Neuralgia and migraines. It was the Ammonium Chloride. The rest of the pills are very, very good herbs and it makes sense, when one studies herbs, that it could help!
I was on tegrotel but I came off it after a month it really didnt agree with me now they are talking about gabapentine when I go back to my dr I'm trying accupunture at moment but as much as it relaxes me when an attack kicks in guarenteed the clinics shut. Anyway my side effects were extreme tiredness and thumping headaches on left hand side of head my TN is on the right.I was popping headache tablets as well and didnt see the reason for that bad enougn having to take tegrotel never mind etras. Please go back to dr and come off them with support. Hope you are on better meds soon.
I am on it. I am tired all the time. Sometimes I can fall asleep at the drop of a hat, then sometimes I wake up in the middle of the night and can't go back to sleep even though I am tired because my brain is "thinking" too much. I drink LOTS of coffee to help me make it through the day. Sometimes my hands get a little jerky. I am extremely forgetful. But the meds keep the pain at bay most of the time. I have a neurosurgeon appt on Feb. 4th. Hoping he can try me on something new or a combo of something because I don't know if I can function on any more of this because I am already on 1200mg a day. Hope this helps!
Thanks all of you. I feel so much better for hearing that, I can't tell you how much its put my mind at rest. I felt like I was going mad. Donna, how you are managing to function on 1200mg a day I don't know. It must be hell. I am only on 600mg. I find that the Teg is much more effective than then Gaba as I'm now only having a few lightening bolds through the day and sometimes when I eat. With the Gaba I had 24 hour a day aching and grumbling and it was creeping up my face into T2. Living in Spain I find they are not so bothered about which medications are good for you! My Doctor gave me pain killers that are banned in most of the world. Need less to say I didn't take them. I also realised she didn't know anything about the condition as she told me to just stop the Gaba and start the pain killers.I new from my own research that pain killes don't work for TN. I looked it up about stopping the Gaba and it said that you should never just stop this sort of medication you must stop over time. Luckily I have another appointment with the Neurologist in a couple of weeks. I will also check out the herbal alternatives, has anyone else had any good results with then?
Thanks again everyone, I'm so pleased I've found this lovely community . x
Thanks very much , I am going to look into it , do you know if you have to stop the medication to start them as I'm so afraid of days of pain, it puts me off trying. x
teacher said:
Debra:
get off that Tegretol. It is very, very bad for you. My doctors will not even prescribe it for me because it causes osteoporosis and decaying bones.
So there are a lot of natural alternatives; one is Neureton and the other is Trigical. These seem to help people. They are herbal with no side effects. Check the web and order them. Or just stay on Gabapentin. Also remember these 2 herbal supplements have been studied (according to their webpages) and one of the respondents in this forum said that the Neureton helped her for a couple of years. Be careful, this supplement, is not Neurontin the drug, but Neureton the herbal supplement. My doctor's clinic helped me to research Trigical too; one of the ingredients was listed in an ancient 17th Century medical journal from Ireland as being effective for Trigeminal Neuralgia and migraines. It was the Ammonium Chloride. The rest of the pills are very, very good herbs and it makes sense, when one studies herbs, that it could help!
Thanks Lynda, I wouldn't stop my meds without talking to the doc, much to scared for that!! Only those, like us, know the agony. Thanks for your reply. Its much appreciated. x I'm going to call the Neuro on Monday. x
lynda said:
Hi ,if you feel your doctor dosen't know anything about TN ask if anyone else in the practice does .
You say your neurologist started you on tegretol ,you could 'phone there and ask for someone to call you back .
Please think carefully before you stop taking your prescribed medicine and start taking herbal suppliments .
Get some help from your surgery or your neurologist first .
Hi Debra,
I have been on the slow release version of Tegretol with much success ( prior to my TN worsening this past year) for 2 years I worked and managed well on 800mg Tegretol. Initially I too had the side effects you mentioned, but within no time I was side effect free.
It is only now at 1600mg Tegretol that I have continuous side effects, I’m also on 2 other meds that contribute to that, but my TN came back after an 8 year remission and has worsened, nothing Med wise is helping, so I am scheduled for an mvd.
With any med (of course not including allergic reactions) you should allow 6-8 weeks at least to see how you tolerate it both for pain as well as side effects. Taking into account that every time you increase the dose you need to add 10 days in my opinion of letting your body adjust to the new dose.
Every med needs a chance to work. I find too many people jump from one med to another in short periods of time which can be more harmful to your body.
Of course again it’s different if you’re experiencing an allergic reaction or a severe side effect, but you must always have an open dialogue with your prescribing Doctor/Neuro about it all.
I wouldn't stop the meds to try the herbal remedy, because usually you can combine both; this is what my neurologist suggested to me too, but only try one of the remedies and wait and see. also everything seems to take time to start working. So keep on the meds; remember it can be dangerous to quickly get off the meds without a schedule of withdrawing slowly. You should always seek your doctor's advice before doing this. I mixed alot of natural alternative remedies with Trileptal and it worked well for me until the remedy petered out and the Trileptal petered out. Perhaps a mix of Trileptal and Neurontin would have been good for me but my neurologist never recommended that.
Also I have had to switch to different neurologists to find one that really seemed to know anything or care. This in itself, is so hard with so a painful disease. Now I think I really have a caring doctor. This is a must.
Debra said:
Thanks very much , I am going to look into it , do you know if you have to stop the medication to start them as I'm so afraid of days of pain, it puts me off trying. x
teacher said:
Debra:
get off that Tegretol. It is very, very bad for you. My doctors will not even prescribe it for me because it causes osteoporosis and decaying bones.
So there are a lot of natural alternatives; one is Neureton and the other is Trigical. These seem to help people. They are herbal with no side effects. Check the web and order them. Or just stay on Gabapentin. Also remember these 2 herbal supplements have been studied (according to their webpages) and one of the respondents in this forum said that the Neureton helped her for a couple of years. Be careful, this supplement, is not Neurontin the drug, but Neureton the herbal supplement. My doctor's clinic helped me to research Trigical too; one of the ingredients was listed in an ancient 17th Century medical journal from Ireland as being effective for Trigeminal Neuralgia and migraines. It was the Ammonium Chloride. The rest of the pills are very, very good herbs and it makes sense, when one studies herbs, that it could help!
Hi Debra, I echo what Mimi said, and also want to mention that it's very important to have your blood levels checked every 6 months while taking Tegretol too!!. :D
I couldn't cope with it either.I just vegitated on sofa for a month!! Jittery,forgetful,loss of balance.Just awful stuff.Couldn't even string a sentence together.
I have type 2 and it seems to be more suited to type 1 sufferers.
I know side effects stink. I remember with this medication I was a walking zombie, in fact I complained to my doctors about the zombie like qualities of the side effects. Even then I did stay on this medication as long as possible. The side effects will slowly lessen but it takes time. Just try to be easy on your self while on this medication. Also blood work should be done monthly at the minimum and no more then every three months to check on your liver and kidney functions. So make sure your doctor is doing that. Unless your are having a serious reaction or side effect don’t jump ship yet. Sometime there are some rough seas ahead before you get to the smooth sailing with a medication that is going to help. Sorry you are going through these side effects but don’t worry at some point they will lessen up.
I feel very much the same as that. I feel like i'm stuck to the sofa a lot of the time as I can;t make decisions. Everything is to hard to think about!! x
jacksharky said:
I couldn't cope with it either.I just vegitated on sofa for a month!! Jittery,forgetful,loss of balance.Just awful stuff.Couldn't even string a sentance together.
I have type 2 and it seems to be more suited to type 1 sufferers.
Thanks for taking the time to reply, you have all been so great. I'm going to call the hospital tomorrow as ask about see the Neurologist again. The thought of staying like this is nasty but the thought of having to change and maybe the pain coming back is also bad. Its a double edged sward! x
Kari said:
I know side effects stink. I remember with this medication I was a walking zombie, in fact I complained to my doctors about the zombie like qualities of the side effects. Even then I did stay on this medication as long as possible. The side effects will slowly lessen but it takes time. Just try to be easy on your self while on this medication. Also blood work should be done monthly at the minimum and no more then every three months to check on your liver and kidney functions. So make sure your doctor is doing that. Unless your are having a serious reaction or side effect don't jump ship yet. Sometime there are some rough seas ahead before you get to the smooth sailing with a medication that is going to help. Sorry you are going through these side effects but don't worry at some point they will lessen up.
Debra, everything you describe is familiar to me. Gab can peter off for some of us. I was then switched to Teg, but tooooo quickly and felt as you say. I stuck with it and the fog dispersed and life returned to normal. If you are having really bad side effects you need to speak to the scribing Dr and a pharmacist for help. I wish better for you :)
I am surprised that 3 of the neurologists would not ever give me Tegretol. I started with Trileptal, but after a year it stopped helping me. Now I am on Neurontin. Have no idea what to expect with this.
Anyway, the neurologists all said that Tegretol causes osteoporis in women 50 or older. And my friend who teaches Dental Hygiene in college says that Tegretol is terrible to the bones and teeth of the mouth. She has to tell her students that if a patient is on Tegretol, make sure not to have the patients undergo any kind of dental work such as root canals. They have seen that Tegretol actually decomposes the jaw bone and bones that hold the teeth in place.
So this should be a warning, but please ask your neurologists how long you have to be on Tegretol before these side effects and damage occur.
Yes, Teacher... I have read that being on Trileptal can cause vitamin D deficiency. So if over the age of 50 it's especially important to think about a supplement. I know I've been taking a supplement myself with a strong D additive in it. I am coming close to that mark shortly as in months away, and I am on Trileptal. I have noticed bone cracking and softer nails since I have been on the Trileptal. I have been on it for only 6 months soooo.... GEEZ Definitely something to be aware of!!