Nice one, Siminative, and so true!
Hi there, I have Otic GPN, but this may be of use nonetheless. I was non-responsive to all epilepsy drugs (bar one) but I am very, very responsive to Paxam (Clonazepam). Amazing for the burning and heat and aching, and tones down the shocks dramatically. I know the drug’s got a bad rap in some arenas, but I am not experiencing any trouble, just comparative liberation! I found some limited help with SSRI meds, but not enough to stay on them and sleep all the time.
Thanks, Kate. I’m on day 4 or 5 of Amitriptyline now and it’s really screwed with me already - low dose or not. It’s messing with my sleep, constipating me and worst of all, seems to have made my depression much worse. I always find this deeply paradoxical - how does an antidepressant make your depression worse? it always makes me think I’m imagining it but I suspect I’m not. It’s changed its quality rather than its depth - it feels different, and not in a good way. I’ll stick with it because they say these things improve with time, but I shall bear your recommendation in mind if it proves to be no use. I have a lot of high ‘sensitivity’ (i.e there’s a burning pre-shock feeling) most of the time so your drug of choice may well work!
Hello my dear,
Yes, the paradox of amitriptyline and other anti-depressants. Can make you miserable, sleep constantly, get around in a fog and feel like shit.
I have the constant, constant burning. It’s so severe it’s visible to the naked eye. My ear goes bright red. It makes people stare. And it aches all the time. Paxam is amazing for burning. If only someone had had the foresight to prescribe it 7 years ago there would have been a lot less suffering.
I’ve a friend with burning mouth syndrome and she too is on paxam and it does wonders for her too.
Let me know how you go.
K
Thanks, Kate, will do! I just had a look at Paxam and I see its list of side effects are as awesome as the rest of the drugs we take. Ah well, it was ever thus. The best you can do is get the one that works the best at the lowest dose with the most tolerable side effects!
Hi again,
The side effects do look scary, but I’ve never experienced any.
K
x
That’s great, Kate (ooh, a teeny poem!) I wish I could say the same. Other than Paracetamol I can’t think of a drug that doesn’t give me side effects. But it does encourage me that it might at least have fewer adverse side effects, if I need to try it out. I never sneer at fewer side effects!
I have TN2 and currently take Cymbalta 120 mg per day (60 mg am & 60 mg pm). This so far has worked the best for me. I’ve tried all the other standard treatments but they either didn’t work at all or had side effects too bad to handle. I also take a low dose of hydrocodone when needed for really bad days with breakthrough pain. Hope you find something that works for you soon! Prayers for you!
Thanks, rf, I appreciate the recommendation. I notice most people using alternatives to anti-convulsants are all type 2 sufferers. I assume that’s because they are dealing with a different, more continuous type of pain rather than sudden shocks. That said, if the theory is correct that Type 2 is really just Type 1 deteriorated then it would suggest that the longer you have the condition the more likely these alternatives are to work.
I’ve only been on Amitriptyline 6 days but it feels as if there has already been a slight improvement in shocks, if not in sensitivity, so I consider this a good sign, especially as I am on a low dose of only 10mg. If it is working, it would suggest that a low-ish dose may well curb this return to pain and make it manageable, so I am hopeful for the future without anti-convulsants.
You must read survingantidepresant.org. This also apply to withdrawal of antiseizure drugs and benzodiazepines.
Some people like me (very sensitive to antiseizures) will get this condition called Prolonged Acute Withdrawal Syndrome.
Some will get this and it is hell. No one knows if it will happen to them. You have to go slowly because if you don’t
It might cause injury the nervous system which can take up to one year to heal. There is no cure for this except TIME.
It is also called PAWS. It will explain how slow you should go. Most doctors listen to drug reps who don’t tell them the ugly truth about of these drugs.
I got this when I was taken off Lyrica in one week but never when I would go off Lexapro several times.
I never had withdrawal when quitting Lexapro- antidepressant and I never tapered.
However,
I suffered severely for one year when stopping Lyrica (200mg a day for one year.) it also cost me $4,000 out of pocket in medical bills. I had Federal Blue Cross.
I agree Linda. I was on cymbalta 30mg once a day for 3 months and went through 14 months of hell trying to come off it. I had the acute withdrawal no one tells you about. Even now, 18 months after my last dose, I will occasionally get crippling leg cramps. Based on my research this is not unusual if you are one of the unlucky few who go into withdrawal.
GO SLOW. GO SLOW. GO SLOW.
Thanks, Linda, I’ve never heard of that. It does cheer me up a little though, since my doctor was very incredulous about my withdrawal symptoms with Carbamazepine - I mean he was incredulous that I had them at all. His face said “Oh yeah, sure, that’s about as believable as B12 helping you”. I don’t know why he was sceptical about it. After all, you’ve been taking relatively high doses of a drug that calms your nervous system. Take it away and hyperactivity and the shakes doesn’t seem so very odd. The shakes lasted an awful long time. The best part of a year I’d say and Carbamazepine did seem to permanently affect the steadiness of my hand. While my hands no longer shake in the mornings I still can’t hold my hand truly steady any more. Before carbamazepine I could - so you tell me!
That’s interesting, Azurelle. I get cramps in the fronts of my feet and shins that I’ve never had before - I didn’t even know you could! That said, I never had them during the ‘Carbamazepine years’ so it would be a kind of long disconnect for Carbamazepine to be responsible!
I dunno woman, some side effects in this category of meds are known to become permanent. I had to come off topamax because it was making my shins numb. When I called the doc about it they freaked out and pulled me off immediately. Scared me a bit they were so upset, actually. I’m fine but apparently could’ve had numb legs the rest of my life.
Now that being said not getting enough salt can cause foot and leg cramps and shin splints. Some meds block salt absorbing.
I have gone through withdrawal from Lyrica 2014 and again from Gabapentin 2017. I got severe withdrawal- burning skin sensation, thigh cramps, insomnia, fatigue, loud tinnitus, loss of appetite ( I lost 30 pounds the first month, loud heatbeat in ear when trying to go to sleep, excessive anxiety, shortness of breath, and depression. During those time I had 3 different internist and neurologists tell me it was all cause from Anxiety not withdrawal. What a joke! Now I have learned how to deal with it from this website and others. I do not tell my doctor anymore when they blame it on anxiety. I do know that my anxiety increases extremely. But this is cause from the withdrawal.
I have given up on my doctors because they get insulted if I tell them I was I have learned about these drugs and withdrawal. I just manages it on my own. I have Discover that neurosurgeons are more familiar and understand better than neurologist.
My neuro did tell me once you have a severe side effect or withdrawal from one med in a category you’re more likely to have it from another med in the category. I have certainly found it to be true.
I got tinnitus with Carbamazepine, or maybe Gabapentin (I was on both at he same time)! I’m so glad you said that, Linda, because (once again) my doc didn’t believe that I had tinnitus from it. I seem to recall that side effect lasted quite a while after I came off the drug too. I thought I was stuck with it, or it was nothing to do with the drugs, and it wasn’t till you said that there I thought, ‘Hey, I used to have tinnitus’. Well, that was an unexpected and pleasant surprise, something I don’t still have. Take a note of the date!
But talking about docs getting insulted, I’ve recently been haunted by an old neurologist who took insult to her professional pride. She was a migraine specialist and put me on Lamotrigine for my TN. When she had to take me back off it because it caused a 6 week migraine (oh irony) she was most insulted and put a note on my file that I suffered from chronic headaches (I don’t). She was so uptight about having prescribed a medication that did the opposite of what it was supposed to she had to blame me for it. Recently, I have had problems with my new doctor refusing me B12 injections and she consulted a neurologist who checked my old hospital notes and - bingo! - came back telling her I suffer from chronic headaches (so that might be my real problem, not TN, was his very bizarre thinking). Talk about ‘mistakes’ in your notes being carried forward. Doctors and their pathetic egos. I don’t know what they do to them in medical school, but they need to stop it.
That’s true, Azurelle. It’s one of the reasons I’ve been trying to find an alternative to anti-convulsants. It’s called the crossover effect and apparently if you’ve had an allergic reaction to one (which I did, very slowly) then you’ll likely repeat the allergic reaction with any other.