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Here is the main question: I had a seizure while tapering off of Neurontin; never had one before. How can I get off it safely?

If you want the history, continue reading:

I was put on Neurontin for migraines and as a possible mood stabilizer in conjunction with a bunch of other psychiatric meds. I've been on it for 5 months, and it isn't working (neither are any of the other millions of medications I've tried). It's only making things worse due to the side effects. So I called my neuro and told her I wanted to go off of it and asked how I should do it. Normally I wouldn't bother asking, but I knew there was a greater risk with this med so I called (I'm also on Wellbutrin). She told me she didn't want me going off of it until I'm seeing another psychiatrist. I just recently left my old one and haven't found a new one yet. SHE was supposed to help me find one. Even if I had one right now, it'd be at least a month before I got in. I told her I was going off it anyway (it's my fucking body) and asked her how to do it safely. She refused to tell me.

I decided to go down by 100mg every other day (my dose was 1200mg). About a week after I started the tapering, I had a seizure. Apparently, it was grand mal. I don't remember anything. I've never had one before. I spent three and a half hours in this really shitty hospital waiting for test results. My blood work was fine. The CT scan was fine. Today, I had an EEG done. That was also normal. After the EEG, I had an appointment with my neuro. We went through all of this and she STILL refused to tell me. She told me I don't have control over my own medicines. She's incredibly arrogant and it never even crosses her mind that hey, I might know my own body more than you. She sees her patients once every 6 months (which is why I'm seeing other specialists) and after 3 appointments with me, she had the audacity to tell me I had a personality disorder, and then wouldn't even tell me what it was. I talked to my pdoc, a person who's studied mental disorders far more than she has and who I saw weekly for 8 months told me I do not, in fact, have a personality disorder. I've got a lot of other issues, but not that type.

As of right now, I'm on 800mg split into 2 doses. I really want to be off this med. Does anyone have any suggestions or advice? Anything is much appreciated.

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Sorry. I can't tell you how to get off it, except to see a doctor. Seriously.

You need to get in to see a pdoc as soon as possible, though it may take a month or so.

I don't know if you started taking the wellbutrin first or started the neurontin first or started them at the same time. Wellbutrin can be a risk for seizures and since you were successful in inducing one, and a grand mal at that, I do highly suggest you suck it up and continue the med until you can actually see a professional who will work with you on your meds.

I mean, you're being pretty stupid in that respect. I can understand the frustration that surrounds meds and not feeling like you are in control of them. Especially when someone has the gall to tell you such a thing.

I think that your neurologist is sort of a jerk for suggesting that you have a personality disorder and refusing to help you get off of a medication that you are unhappy with. That's just assholey.

Is it because of this specific med or because you don't want to be on a mood stabilizer at all? I can't quite get that from your post.

Bottom line:

You probably know your body much better than any of your doctors, so you are the only person who can really say what is and isn't acceptable in terms of side effects. On the other hand, you don't know medications as well as doctors so they are going to have the absolute last word since they hold the prescription pad. A grand mal is a scary thing and you should really be holding off changing any meds until you are seeing another doctor- who should be aware of the neurontin situation when you first see them. You should consider that the wellbutrin may be a factor and since you don't seem to have any good communication with your neurologist, see if you can find a new one if it is at all possible.

Also- is there any way for you to continue seeing your old pdoc until you find a new one [since you really do want to fix your med situation] or is this not an option?

I don't know what side effects are getting to you, but you want to avoid another seizure at all costs, which means not screwing with the dosages right now. It sounds like your neurologist just can't be bothered to take time for you or try to figure out what would be best for you overall right now, either.

It really sucks, but the best thing might just be to have patience and push for an appointment with a new pdoc.

LR

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I agree with Luna. Changing your own meds when seizures are a possibility is flat-out dangerous. Can you at least talk to your pdoc about it? He's not a neurologist, but he may (or may not) be willing to supervise you through safely tapering neurontin.

Also: Each time someone has a seizure, they are more likely to have another. If you risk a seizure this time and have one, you are more likely to have more, and more. That's one reason it's really important to avoid raising your seizure risk. Especially if you don't have to.

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Grand mal seizures are natures way of saying "don't fuck with your meds yourself".

No doctor is going to tell you how to change your own meds after you have fired them. Doubly true for a neurologist. Tripley true after a your first seizure.

You need to get a new pdoc ASAP. The new one may be willing to handle tapering Neurontin based on all the other negative neuro tests. You may still need to get another neurologist.

Supreme self confidence, read arrogance, seems to be fairly common among neurologists, in my experience. However consider one perspective on doctors: We don't hire them for their sparkling personalities, we hire them for their knowledge and expertise. Conversely, you may want to review how you present yourself to your doctors and how you react to them. You don't like your neuro, you are leaving your pdoc, you don't like the ER. Only you know.

Seizures are no laughing matter, whatever the cause. We now know that each seizure damages the brain, lowering the threshold and increasing the likelyhood of more seizures.

It may take a few weeks to get everything set, but don't give up, and don't take unnecessary risks.

Good luck!

a.m.

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My first experience with Neurontin began at 300 mg per day [ by this dumbass doc that didn't even realize what hypomania was when she put me on an SSRI ]. Anyways, I realized that it helped somewhat. After having a SPECT performed at the Amen clinic down in Virginia, the doc there [ a fucking GENIUS... the best doc i've ever met ] said Jay, we're gonna aggressively push this up. I'm now at 800 mg / 3x per day. A couple of months back, I'd tried lowering it down to 400 mg / 3x per day... HUGE mistake! I went into a wicked ultradian rapid cycling episode, which ended up with me bawling my eyes out, and leaving work early. Bumped the dose back up to normal that night, and felt better very soon after. I don't dare mess with my dosage anymore... i believe that this is my sweet spot. It's important to journal every change in med dosages; really helps to keep track of what the hell amount is best for you. Like Jerod says... this is way more complicated than rocket science!!

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Here is the main question: I had a seizure while tapering off of Neurontin; never had one before. How can I get off it safely?

As of right now, I'm on 800mg split into 2 doses. I really want to be off this med. Does anyone have any suggestions or advice? Anything is much appreciated.

I am NOT an expert on seizures, but it is possible (if not likely) that while the Wellbutrin slowly eroded

your seizure threshold the Neurontin kept you from going into seizure from it. I doubt you'll find much

disagreement from anyone who has had a medication-provoked seizure that without an anticonvulsant

to compensate, once you begin to have auras and seizures from Wellbutrin, they only get worse and

more frequent as long as you stay on that medication.

Most people think about the "grand mal" seizures as a problem. But an "absence seizure" can still kill you if

you are driving at the time.

You are going to have to stay on the Neurontin until you and your next doctor can decide on an

anticonvulsant that works better for you.

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I agree with the thought that this may be more from the Wellbutrin than from Neurontin withdrawal..I have and do move my dose of Neurontin around by as much as 600mgs no ill effects....this is with my docs knowledge...If you Google Wellbutin you will see seizures are side effects....I never saw that with Neurontin....in fact they use Neurontin FOR seizure control thats what its use was orignially for and they use it when one comes off benzos and other drugs etc...to avoid seizures from withdrawal off those meds......I am NOT saying it 100% was not the Neurontin but look towards your Welbutrin and see a DOC on this whole thing

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Well, I pretty much expected this response, but I'd rather be yelled at by people who have actually been there rather than a rich, arrogant bitch who only cares about covering her own ass and interrupts you repeatedly like a fucking 12 year old when you're trying to speak.

I tried contacting my pdoc (before I read any of this thread) but he won't tell me anything because I'm not an official patient of his anymore. Understandable. I thought about staying with him a little longer, but then I found out my neuro had already contacted him (Why? I'm not even his patient anymore. She never did it when I was his patient). I've called a ton of psychiatrists in the past few days and most of them aren't accepting new patients or they won't take anyone under 19.

I was on Wellbutrin by itself for months, and then in conjunction with a ton of other psychiatric meds (none of them being anticonvulsants - in fact, meds that tend to lower the seizure threshold even more) before I even started the Neurontin. It's not the Wellbutrin. Yes, the Wellbutrin made it easier for me to have a seizure, but it isn't the cause.

Here's my basic situation: I've been getting daily migraines for over a year, prior to that I got them 4 to 5 times a week for about a year and a half. I've seen so many doctors and I've been on a medication list three pages long (size 12 font). I also have TMD (many people know it as TMJ); the pain in my jaw and neck has gotten to be just as bad as the migraines. I've tried every pain killer available and the only thing that even remotely touches it is oxycodone, which is very difficult to get, especially considering my age. I've been in constant pain without any relief for over a year and it's destroyed my entire life. I was a straight A student and had planned on being an astronaut my entire life (before my health got so messed up). I had to literally drop out of school last year. The plan was that by the start of this year, I would have found something that helps, but the pain has only gotten worse. The main reason is that my jaw specialist who was supposed to be treating my TMD told me there was nothing physically wrong with my jaw and there was nothing else he could do besides the appliance he'd already given me. I wore it religiously for 9 months, hoping that it might start helping eventually. I kept telling people that the cause of my headaches was because of my jaw, but everyone (and by "everyone", I mean the pdoc I'm no longer going to be seeing and the neuro who I will never be speaking to again) assumed it was entirely a psychological cause and refused to even consider the fact that I'd been given a diagnosis by a dentist and a specialist. I can easily admit that, although I strongly believe if my jaw is fixed I'll improve significantly, there is a definite psychological and chemical factor. I finally did some serious searching and found an orofacial pain specialist about two hours from here. I saw him last week (I had the seizure in his office, which really screwed things up). He took one look at my MRI and said that there definitely was something physically wrong with my jaw and that the appliance I'd been wearing was most likely making it worse. I think he might actually be able to help me. He's my last resort. I'm sick of the fucking medicines that don't help my mental disorders or my migraines, and kill me with side effects. I still continued to take them, though. Except in a few cases where my body/brain responded very badly, I've given every med I've been on at least two months.

I know most of you have had fucked up lives, or fucked up episodes in your lives, and I'm not trying to act as though my situation is in any way worse than the rest of yours (I also believe that you can't compare lives because there's no way you can ever truly understand what someone else is going through and how they feel). I just wanted to explain where I was coming from. It wasn't a decision of, "Hey, I don't think I like this med anymore and since I obviously know more than the doctors, and it's my body so I know I'm right, I think I'll just stop taking it." I knew the risk was there, which is why I called for help in the first place.

Conversely, you may want to review how you present yourself to your doctors and how you react to them. You don't like your neuro, you are leaving your pdoc, you don't like the ER. Only you know.
I've given doctors two years to try to fix me as my entire future slowly deteriorated away (I had to drop out during my junior year). So yes, I do have a problem with doctors. Now. I didn't have that attitude until they started being entirely incompetent. Of course I don't expect them to be perfect or even close to that. But I expect them to at least make an attempt and take input from the patient. Also, I'm leaving my pdoc because we just disagree too much on cause and effect and we weren't making any progress, not because I'm a whiny bitch who doesn't like it if her doctors don't do exactly as she says. We left on good terms. And who does like the ER?

Is it because of this specific med or because you don't want to be on a mood stabilizer at all?

It wasn't even supposed to be a mood stabilizer, it was supposed to be for the neurological pain. Which is why my neuro's argument pissed me off so much. If she had given me some sort of logical reason or explanation, I would definitely have listened and seriously considered what she said. But she only told me that I should wait until I'm in with another pdoc. Anyway, I have some pretty serious depression and a few anxiety disorders like OCD. No bipolar or anything similar. I was already on Wellbutrin, Lexapro and a fairly high dose of Seroquel (250mg/day) considering that first line treatment for disorders like Depression or Sensory Integration Disorder is definitely not an AAP.

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I was on Wellbutrin by itself for months, and then in conjunction with a ton of other psychiatric meds (none of them being anticonvulsants - in fact, meds that tend to lower the seizure threshold even more) before I even started the Neurontin. It's not the Wellbutrin. Yes, the Wellbutrin made it easier for me to have a seizure, but it isn't the cause.

I think that the hows and whys of various medications lowering individual seizure thresholds isn't too well

known. So avoiding problems on one med doesn't guarantee safety on the rest. It still comes back to

having HAD a seizure, Wellbutrin is one of the medications you would really want to add an anti-convulsant

to if you're to stay on the medication. IIRC, some doctors will prescribe a combo for just that reason.

Hm. Lexapro would NOT be my first suggestion with TMD - it's as notorious for causing TMJ pain as Wellbutrin

is for increasing seizure risk...

Is it because of this specific med or because you don't want to be on a mood stabilizer at all?

It wasn't even supposed to be a mood stabilizer, it was supposed to be for the neurological pain.

I was already on Wellbutrin, Lexapro and a fairly high dose of Seroquel (250mg/day) considering that first line treatment for disorders like Depression or Sensory Integration Disorder is definitely not an AAP.

But when either one is working, I don't think too many doctors would add a TCA for the depression +

neuro. pain. I'm a little surprised that Cymbalta wasn't substituted for the WB+Lex, but I think can

see where Neurontin would be considered when adding a med to working ADs (Those who know more

about the ACs may correct me on this)

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