Posted , 9 users are following.
Has anyone else tried Tegretol (carbamazepine) and had horrific side effects? I can't stop vomiting, the room is spinning and the headaches are surreal. I only took Tegretol for three days and the largest dose was 200mg. This drug is making my life a living hell. The best I can do is stay in bed all day. This is no way to live life.
0 likes, 11 replies
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colin69485 Chrisnyc
Posted
Hi there
I used Carbamazapine for over a year with little side-effects until I suddenly had a seizure, blanked out and ended up in hospital. It might have been that I had a couple of glasses of wine and no food since previously taking my usual dose - can't remember the dosage but it wasn't near the upper limit. The other possible explanation was a drop in sodium ion concentration which can be caused by carbamazepine.
Anyway, as a result, the neurologist involved recommended that I change medication and I've been on gabapentin ever since. This is not as effective in giving relief but has less side-effects in most patients. Suggestion: Get off the carbamazepine asap until you've found out why it's having such a drastic impact. You cannot go on like you are. Suffer the pain whilst sorting out an alternative.
janice91400 Chrisnyc
Posted
I'm so sorry. This disease is relentless. I agree that life is meaningless to have such pain,day and day out. No one understands. I'm on Gabepentine, 400 mg., a day. Will put it to five hundred tonight. Pain is horrible this week. Can't get a diagnoses from the neurologist. Says it's my teeth. Like an idiot, I had all but nine teeth extracted. Still pain. Dentist pleaded with me not to do it. She was right.
Going to ask my primary Dr., this week, if Dartmouth, in N.H. might be able to help me. Iam desperate for relief.
Keep hope, keep going. How long have you had TN? Try another drug. I do wish you the best. I hope someone has answers for us soon.
Janice.
sharon33606 Chrisnyc
Posted
i was initially put on Carbamazapine (5years ago), and within a very short time also suffered adverse reactions to the drug.
i was immediately taken off it and put on OXCARBAMEZAPINE.
Have never had a reaction and seem to control the condition. I take 600 mg per day, together with Lamotrigine.
that is not to say I don’t have any episodes, but find I can manage and more importantly, can function.
My TN was confirmed with an MRI, which revealed the blood vessel is wrapped around my TN nerve. I am 65 and have now been advised not to have MVD, if I can manage the condition with what I am doing. My neurologist has said I can take up to 1200mg of Oxcarbamezapine, however know I wouldn’t function with that level of dosage.
Do trust you get a satisfactory outcome with modification of the meds.
Wishing everyone everything of the best with this very difficult condition. Try not to let it beat you.
colin69485 sharon33606
Posted
Hi Sharon Thank you sending out a most valuable and balanced response to chrisnyc message. As you will see in my reply, carbamazepine does not suit everybody. My recent visit to see a specialist in London, lead to the same conclusion as your account. My medication is under review and an operation was seen as a last resort, not a panacea, as some suggest. I'm currently taking a very high dose of gabapentin and need to consider an alternative. It could well be oxycarbamazepine, that is recommended. Certainly, chrisnyc needs urgent help and advice on the drug front and your history should help. Thank you.
Chrisnyc
Posted
I've been living with TN for 30 years. The searing burning pain is not limited to my face, but my scalp, neck and back. It is so bad I can no longer wear a shirt. My teeth and gums are very painful. At this point, the doctors are at a loss. Tegretol is not a drug I can tolerate in the slightest and the Lyrica is not very effective. Steroids, B12 Infusions, Naproxin, nothing works. This disease has stripped me of my life and I just want to die. Has anyone had any luck with Dignitas in Switzerland? It's a place you can go an euthanize yourself in a safe environment. I am desperate and just want out at this point.
chris78446 Chrisnyc
Posted
Jayjay19 chris78446
Posted
Hey Chris I'm glad you have had some relief how long have you had this disease. I'm asking cause my mom was just recently diagnosed and I want her to have an operation like as soon as possible but they wanna wait to see if the mess work first
chris78446 Jayjay19
Posted
Jayjay19 chris78446
Posted
d25830 Chrisnyc
Posted
Chrisnyc, I have been on carbamazepine (tegretol) for just over a month at 400mg a day to fix my TN.
The bets advice I could give you is to stay with it for at least 1 month before switching to a different drug or "cousin" drug of it.
The 1st few days I took it it didn't really do much for me & i was still in a lot of terrible pain. Luckily they upped my dose to 200mg 2x a day, & I was able to speak again & consume room temp soups with out pain.
I soon found that what I traded our for pain I picked up in Dizziness. My balance was off & had to hold onto things as I walked around the house. But luckily as a 10 days or so went by with the upped dose,, my hand motor functions & balance slowly recovered & so did my nausea.
Always be sure to eat something when you take your Rx of carbamazepine, and avoid grapefruit juice as it counters the drugs effects.
I was very close to switching off the drug, but luckily my body adapted to it over time & I was able to walk, move around & drive with not diziness, even when taking the Rx on an empty stomach.
jill55306 Chrisnyc
Posted
Hi there, I had same side effects to start with, took a good 2to 3 months before I found the right dose and got used to the medication.Ask dr for anti sickness tablets.Your body will adapt, it just takes time. There were days when I didn't know what was worse, the pain or side effects of the drug.I really can empathise, there were days when I was afraid to shut my eyes at night, one because I was so dizzy even lying down and 2 because I just didn't know what would happen in the mornings.Sometimes woke up got up and fell over. What made a huge difference to me was my occupational health dr from work who really supported me through this. I hope things are better for you soon.