Hi Everyone, I’ve just joined the goup. My doctor prescribed Tegretol, only warning me that it could cause drowsiness so I was quite shocked at all the potential side effects. I took half a tablet then got cold feet and haven’t taken any more. One of my concerns is that I have eczema which I’m just about keeping under control so I’m afraid that it will get worse on this medication. What are other peoples experiences on this drug?
Tegretol really helped my TN pain. It did make me drowsy and tendency to throw up. After 3 weeks I developed a really bad rash all over my arms and legs. Bright red bumps that itched horribly. My kids said I looked like a red toad! I had to stop taking it. But I do know several people that have taken it for years. Good luck if you decide to use it.
There are many side effects to Tegretol - as there are with many of the drugs used to treat TN. I got quite bad memory loss and drowsiness when on Tegretol (I’m on Tegretol 1200mg but the side effects have now abated somewhat). Remember that everyone will be effected quite differently to you but with you eczema concerns maybe have another chat to your doctor (I have asthma and a little eczema and had no change). Good luck Pat.
Pat,
I would try it and see if it causes any reactions and it may stop your pain. Not everyone has bad side effects.
Liz
Hi Sharon, Thanks for your comments and support. I’m glad that Tegretol helped your pain but I’m worried about the lumps and bumps. I had that a year ago after eating strawberries. I’m still thinking about it & may wait and see how things go x
Sharon Bryant said:
Tegretol really helped my TN pain. It did make me drowsy and tendency to throw up. After 3 weeks I developed a really bad rash all over my arms and legs. Bright red bumps that itched horribly. My kids said I looked like a red toad! I had to stop taking it. But I do know several people that have taken it for years. Good luck if you decide to use it.
Hi Susan, Thanks for replying to me. I don’t need any more memory loss at my age. It’s interesting to hear that your side effects have abated and to learn what your dosage is. My doctor has prescribed 600mg daily so I guess that she has put me on a low dose to begin with. x
Susan said:
There are many side effects to Tegretol - as there are with many of the drugs used to treat TN. I got quite bad memory loss and drowsiness when on Tegretol (I’m on Tegretol 1200mg but the side effects have now abated somewhat). Remember that everyone will be effected quite differently to you but with you eczema concerns maybe have another chat to your doctor (I have asthma and a little eczema and had no change). Good luck Pat.
Hi Sabrina, I hadn’t realise that there were other drugs than Tegretol so it’s reassuring that there are other options. We don’t have Tylenol here in the UK but I guess it’s an everyday painkiller like aspirin or paracetamol. I’m more positive about trying drugs now but as my symptoms have lessened since I stopped sleeping on my face I’m going to wait a week or so before the next step. x
Sabrina Ellis said:
Hi Pat, Tegretol is usually one of the first medications prescribed to treat tn pain.All medications have side effects and no one really knows how it will effect them until they try it.If you read the side effects of tylenol,you would never try it.You may want to try it starting with a very low dose and gradually increasing it,allowing your body to get used to it.If you can’t tolerate the side effects,there are many more meds for you to try.
Liz, thank you for taking the time to reply and for your reassuring words, I do appreciate it. x
Liz K. said:
Pat,
I would try it and see if it causes any reactions and it may stop your pain. Not everyone has bad side effects.
Liz
Hi Pat,
I can’t really comment on the Carbamazepine (tegretol) as I haven’t been prescribed it. I actually refused to take it, because of a long standing problem I have with cardiac arrhythmias, and I believe carbamazepine to occasionally cause these side effects, I had too many problems with amitriptyline and other similar drugs. I really didn’t want to go through that again.
There are many other meds for neuropathic pain, they are either the older anti-depressants such as amitriptyline or the Anti-epileptic drugs like carbamazepine, gabapentin (neurontin), pregabalin (lyrica) and many others. Some newer anti-depressants have been found to be effective, such as Duloxetine. So there are plenty of alternatives to carbamazepine, which was found to be fairly effective for TN in the 1970s. A lot of water has passed under the bridge since then, and meds with a lower side-effect profile do exist.
It is quite possible that Carbamazepine could be the ideal drug for you, as everyone has said, we all react differently to these drugs and not everyone experiences the side-effects. It might be worth asking your GP or neurologist if you can see a Pain specialist. There are quite a few pain clinics in the UK. I attended the clinic in Bristol, it was a much quicker route to pain relief than going through the neurologists.
There is a list of Pain clinics in the UK at the British Pain Society Website
You will need a GP referral, mine was very amenable to this, so you shouldn’t have too many problems.
Tylenol is a trade name for paracetamol which is called acetaminophen in the US.
Jon (Bristol, UK)
Pat Gascoigne said:
Hi Sabrina, I hadn’t realise that there were other drugs than Tegretol so it’s reassuring that there are other options. We don’t have Tylenol here in the UK but I guess it’s an everyday painkiller like aspirin or paracetamol. I’m more positive about trying drugs now but as my symptoms have lessened since I stopped sleeping on my face I’m going to wait a week or so before the next step. x
Sabrina Ellis said:Hi Pat, Tegretol is usually one of the first medications prescribed to treat tn pain.All medications have side effects and no one really knows how it will effect them until they try it.If you read the side effects of tylenol,you would never try it.You may want to try it starting with a very low dose and gradually increasing it,allowing your body to get used to it.If you can’t tolerate the side effects,there are many more meds for you to try.
Hi Pat,
I was prescribed tegretol also when diagnosed with TN. I was in horrendous pain and the tegretol took the pain away, almost like magic. It was wonderful at first, but I gradually lost myself as a person with this drug. I was exhausted, nervous, depressed, extremely forgetful…I felt like I lost myself, my personality. It was awful, although it was better than the agonizing pain. I would recommend you try neurontin if you’re not sure about tegretol. I don’t think neurontin works as well as tegretol with the pain, but there seem to be less severe side effects.
Good luck!
Jamie
Hi Pat,
Hope you are doing better. I forgot to add that I was prescribed tegretol for my TN. It was the second drug I tried. I tried Lyrica for a week but it didn’t help and I was allergic. I met my doctor on Monday morning. She had been on vacation for a week. I was hurting so badly. Little did I know the pain would get worse. Anyway, she gave me tegreaol and the same day the pain was so much better. I increased the medicine and within a few days, the pain was gone. I was on it for about a year and half and I developed some blood issues. I was switched to neurontin. It worked until the pain came back and it was horrendous. That episode led to my MVD. But like Sabrina said, there are many drugs that can be tried.
Liz
Jon Leonard said:
Hi Pat,
I can’t really comment on the Carbamazepine (tegretol) as I haven’t been prescribed it. I actually refused to take it, because of a long standing problem I have with cardiac arrhythmias, and I believe carbamazepine to occasionally cause these side effects, I had too many problems with amitriptyline and other similar drugs. I really didn’t want to go through that again.
There are many other meds for neuropathic pain, they are either the older anti-depressants such as amitriptyline or the Anti-epileptic drugs like carbamazepine, gabapentin (neurontin), pregabalin (lyrica) and many others. Some newer anti-depressants have been found to be effective, such as Duloxetine. So there are plenty of alternatives to carbamazepine, which was found to be fairly effective for TN in the 1970s. A lot of water has passed under the bridge since then, and meds with a lower side-effect profile do exist.
It is quite possible that Carbamazepine could be the ideal drug for you, as everyone has said, we all react differently to these drugs and not everyone experiences the side-effects. It might be worth asking your GP or neurologist if you can see a Pain specialist. There are quite a few pain clinics in the UK. I attended the clinic in Bristol, it was a much quicker route to pain relief than going through the neurologists.
There is a list of Pain clinics in the UK at the British Pain Society Website
You will need a GP referral, mine was very amenable to this, so you shouldn’t have too many problems.
Tylenol is a trade name for paracetamol which is called acetaminophen in the US.
Jon (Bristol, UK)
Pat Gascoigne said:Hi Sabrina, I hadn’t realise that there were other drugs than Tegretol so it’s reassuring that there are other options. We don’t have Tylenol here in the UK but I guess it’s an everyday painkiller like aspirin or paracetamol. I’m more positive about trying drugs now but as my symptoms have lessened since I stopped sleeping on my face I’m going to wait a week or so before the next step. x
Sabrina Ellis said:Hi Pat, Tegretol is usually one of the first medications prescribed to treat tn pain.All medications have side effects and no one really knows how it will effect them until they try it.If you read the side effects of tylenol,you would never try it.You may want to try it starting with a very low dose and gradually increasing it,allowing your body to get used to it.If you can’t tolerate the side effects,there are many more meds for you to try.
Hi Jon, You sound as if you have a medical background. There was a lot of information in your reply, I’ll have to keep a copy of it. Many thanks for giving such a detailed answer.
Pat Gascoigne said:
Jon Leonard said:Hi Pat,
I can’t really comment on the Carbamazepine (tegretol) as I haven’t been prescribed it. I actually refused to take it, because of a long standing problem I have with cardiac arrhythmias, and I believe carbamazepine to occasionally cause these side effects, I had too many problems with amitriptyline and other similar drugs. I really didn’t want to go through that again.
There are many other meds for neuropathic pain, they are either the older anti-depressants such as amitriptyline or the Anti-epileptic drugs like carbamazepine, gabapentin (neurontin), pregabalin (lyrica) and many others. Some newer anti-depressants have been found to be effective, such as Duloxetine. So there are plenty of alternatives to carbamazepine, which was found to be fairly effective for TN in the 1970s. A lot of water has passed under the bridge since then, and meds with a lower side-effect profile do exist.
It is quite possible that Carbamazepine could be the ideal drug for you, as everyone has said, we all react differently to these drugs and not everyone experiences the side-effects. It might be worth asking your GP or neurologist if you can see a Pain specialist. There are quite a few pain clinics in the UK. I attended the clinic in Bristol, it was a much quicker route to pain relief than going through the neurologists.
There is a list of Pain clinics in the UK at the British Pain Society Website
You will need a GP referral, mine was very amenable to this, so you shouldn’t have too many problems.
Tylenol is a trade name for paracetamol which is called acetaminophen in the US.
Jon (Bristol, UK)
Pat Gascoigne said:Hi Sabrina, I hadn’t realise that there were other drugs than Tegretol so it’s reassuring that there are other options. We don’t have Tylenol here in the UK but I guess it’s an everyday painkiller like aspirin or paracetamol. I’m more positive about trying drugs now but as my symptoms have lessened since I stopped sleeping on my face I’m going to wait a week or so before the next step. x
Sabrina Ellis said:Hi Pat, Tegretol is usually one of the first medications prescribed to treat tn pain.All medications have side effects and no one really knows how it will effect them until they try it.If you read the side effects of tylenol,you would never try it.You may want to try it starting with a very low dose and gradually increasing it,allowing your body to get used to it.If you can’t tolerate the side effects,there are many more meds for you to try.
Liz, thank you for the extra comments. It sounds as if tegretol really worked for you. How did the MVD go?
Liz K. said:
Hi Pat,
Hope you are doing better. I forgot to add that I was prescribed tegretol for my TN. It was the second drug I tried. I tried Lyrica for a week but it didn’t help and I was allergic. I met my doctor on Monday morning. She had been on vacation for a week. I was hurting so badly. Little did I know the pain would get worse. Anyway, she gave me tegreaol and the same day the pain was so much better. I increased the medicine and within a few days, the pain was gone. I was on it for about a year and half and I developed some blood issues. I was switched to neurontin. It worked until the pain came back and it was horrendous. That episode led to my MVD. But like Sabrina said, there are many drugs that can be tried.
Liz
Hi Jamie Leigh, it sounds as though it’s a balancing act trading pain relief for potential side effects & the loss of personality sounds quite serious. I’ve been distracted for the last few days as my husband has been in hospital [for a routine op] but the extra stress has been felt in my jaw. I need to make a decision soon. x
jamie leigh said:
Hi Pat,
I was prescribed tegretol also when diagnosed with TN. I was in horrendous pain and the tegretol took the pain away, almost like magic. It was wonderful at first, but I gradually lost myself as a person with this drug. I was exhausted, nervous, depressed, extremely forgetful…I felt like I lost myself, my personality. It was awful, although it was better than the agonizing pain. I would recommend you try neurontin if you’re not sure about tegretol. I don’t think neurontin works as well as tegretol with the pain, but there seem to be less severe side effects.
Good luck!
Jamie
Hi Pat,
Sorry about the long post. I did train as a psychiatric nurse in the early 80s, my health was not good then, so I soon became a target for the ‘efficiency cuts’ of that time, so changed career. Many of the drugs used for neuropathic pain (NeP) are also used in psychiatry, so the names and the actions of these drugs are fairly familiar to me.
What I was trying to say was that there are alternatives, and what suits one doesn’t necessarily suit someone else. There’s quite a good writeup on the treatment of NeP at the Patient UK website, you might find it useful.
Patient UK NeP
The Oxford Pain Website is also good.
Oxford Pain Website
When I first started to take meds for NeP I found them not as effective as I had wished, and I almost blamed myself for being a failure. So I found it useful to read that these meds are not always that effective and what suits one person won’t suit another. It helped me to make informed choices.
ttfn,
Jon
Hi Pat, Tegretol is the only med that I have found that can ease the intensity of TN pain…but your right about the side affects…everyone is different…in my case I got lazier, balder and fatter then I was. When I lit up a $ 10 cigar they didn’t taste good anymore so I had to quit my $ 60 a day habit…also I was thirsty, all the time, but I wasn’t allowed to drink my usual case of beer a day…so instead I hate cheese burgers…I thought I was losing my hair, but my wife said it was my imagination and reminded me that I had been bald as an egg since my 20’s…it was pure hell…but now Im back on track eating tegretol by the bottle, and paying $ 100.00 a session to a chinese acupuncturist who doesn,t speak english and won’t take checks…Im hoping to get relief from acupuncture but all Im relieved of is my cash…so hang in there kid…there are different types of drugs besides tegretol…but it works for me…Vic in San Diego
Pat,
I had the MVD about 15 mths ago. I was never pain free after having it, but thousands of times better. But the pain is getting worse and it has been increasing a lot more in the last couple of months.
Liz
Pat Gascoigne said:
Liz, thank you for the extra comments. It sounds as if tegretol really worked for you. How did the MVD go?
Liz K. said:Hi Pat,
Hope you are doing better. I forgot to add that I was prescribed tegretol for my TN. It was the second drug I tried. I tried Lyrica for a week but it didn’t help and I was allergic. I met my doctor on Monday morning. She had been on vacation for a week. I was hurting so badly. Little did I know the pain would get worse. Anyway, she gave me tegreaol and the same day the pain was so much better. I increased the medicine and within a few days, the pain was gone. I was on it for about a year and half and I developed some blood issues. I was switched to neurontin. It worked until the pain came back and it was horrendous. That episode led to my MVD. But like Sabrina said, there are many drugs that can be tried.
Liz
You might be losing a lot of things [especially cash] but your sense of humour is in great form. Thanks for the much-needed laugh. x
Vic Maidhof said:
Hi Pat, Tegretol is the only med that I have found that can ease the intensity of TN pain…but your right about the side affects…everyone is different…in my case I got lazier, balder and fatter then I was. When I lit up a $ 10 cigar they didn’t taste good anymore so I had to quit my $ 60 a day habit…also I was thirsty, all the time, but I wasn’t allowed to drink my usual case of beer a day…so instead I hate cheese burgers…I thought I was losing my hair, but my wife said it was my imagination and reminded me that I had been bald as an egg since my 20’s…it was pure hell…but now Im back on track eating tegretol by the bottle, and paying $ 100.00 a session to a chinese acupuncturist who doesn,t speak english and won’t take checks…Im hoping to get relief from acupuncture but all Im relieved of is my cash…so hang in there kid…there are different types of drugs besides tegretol…but it works for me…Vic in San Diego
Liz, I’m so sorry to hear about your increasing pain. Do you have any other options?
Liz K. said:
Pat,
I had the MVD about 15 mths ago. I was never pain free after having it, but thousands of times better. But the pain is getting worse and it has been increasing a lot more in the last couple of months.
Liz
Pat Gascoigne said:Liz, thank you for the extra comments. It sounds as if tegretol really worked for you. How did the MVD go?
Liz K. said:Hi Pat,
Hope you are doing better. I forgot to add that I was prescribed tegretol for my TN. It was the second drug I tried. I tried Lyrica for a week but it didn’t help and I was allergic. I met my doctor on Monday morning. She had been on vacation for a week. I was hurting so badly. Little did I know the pain would get worse. Anyway, she gave me tegreaol and the same day the pain was so much better. I increased the medicine and within a few days, the pain was gone. I was on it for about a year and half and I developed some blood issues. I was switched to neurontin. It worked until the pain came back and it was horrendous. That episode led to my MVD. But like Sabrina said, there are many drugs that can be tried.
Liz