Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-27-2006, 07:11 PM #1
ms_kathy ms_kathy is offline
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Default Neurontin Withdrawal

I am really in a pickle and thought I would ask advice from this group. I have RSD/CRPS in my right arm do to an injury at work three years ago so my medical is being paid by Workers Comp Insurance. I just went to pick up my supply of Neurontin last night and I was told that the Workers Comp Insurance rejected the payment. I have been on 3600mg of Neurontin for three years now and I will be completely out of medication tomorrow.

I am terrified that something is going to happen while going through withdrawal tomorrow. Can anyone tell me what to expect and is there anything I can do to protect myself against harm or stroke?

Thanks in advance
Kathy
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Old 12-27-2006, 07:30 PM #2
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Default i've been there too..

oh kathy i am so sorry you have to deal with workman's comp...i have been abused by them for the last 13 years...sorry i have no answers to your question..your dr should send them your diagnosis again and insist that you get the right medication that he is prescribing for you... they pulled the same stuff with me many, many times... a few times i paid for my meds(not cheap ones either) and then after my dr either wrote to them( and a few times had to call them) i was then reimbursed .... good luck..the key is to keep on fighting them and not giving in.....linda
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Old 12-27-2006, 09:44 PM #3
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Kathy,

I was on the same dosage of Neurontin that you are on several years ago and it made me unable to function properly. I had gone to my Dr for a routine hormone shot and my PCP was out so I had to be seen by another Dr who had a fit when he read my chart and saw the dosage of Neurontin I was on. I told him I didn't put myself on it, that I was put on it by my pain dr and then my PCP just kept my scripts wrote for me so I didn't have to travel to my pain management clinic. I did take myself off of them after that after he explained what Neurontin was doing to my brain, and I didn't have any side effects, but everyone reacts differently. Most meds don't work on me like they do normal people anyway.

I would call your Dr's office in the a.m. just to let them know what is going on to see what they suggest you do. I am sorry to hear how WC is treating you and I think it is so sad that they have the right to just not refill a patients script if they don't want to... Do you have an attorney? If so contact him/her as well.

Keep us posted and know that we are here if you need us. I also want to say Welcome to our RSD Family. You will find some of the greatest folks on earth here and if you need answers I'm sure some one here will be able to help or if you just need to vent we're here to listen.

Hugs,
Janet

Last edited by jcherry; 12-27-2006 at 09:57 PM.
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Old 12-28-2006, 09:48 AM #4
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Default coming off it

I was on that much in 2001. I just could not think right --my boss was on me for performance problems and then I forgot where I was going one day driving to work. I called the doctor and said if I don't get off this, I am going to be fired from my job. There were other problems with it too...

I came off it over 4 days under Dr's supervision.

I felt like I had a TERRIBLE case of flu. Except no vomiting or diarheah (sorry I can never spell that!) That was all. I felt bad, but the neuro said it would be ok. The achy body, headache, flu-like feelings lasted a few days, then all was ok.

I felt so much better after that stuff left my body - but it did take a couple months for my head to clear.

They switched me to Topomax, and I've never looked back. It's been much better for me!!

Good luck with this.

Jules
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Old 12-28-2006, 11:59 AM #5
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Default Neurontin

You really need to talk to your dr and even see if they have samples and or can prescribe a generic for your insurance etc. Neurontin is a drug that you need to wean yourself off of slowly, just as you slowly increase it when going on it.
My daughter has had to be on it two different times and both times it was stressed to us that we had to follow the schedule for weaning on and off.
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Old 12-30-2006, 12:24 PM #6
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Thank you all for posting to my thread. With the few pills I had left, I went from 3600mg a day of Neurontin, to 1800mg on Wednesday, 1200mg on Thursday and yesterday was a full day with no meds at all. Last night was the worse, I don't think I slept much at all. I was in such pain along with the chills and sweats.

Linda,
I would have called my doctor but because of the holidays, he's out of town until January 2nd, 2007. That's also the day I'm suppose to go in for another Stellate Ganglion nerve block. I can only assume that if the Worker's Comp rejected my meds, that they're not going to pay for anymore treatment either. And yes, they have pulled this on me before too.

Janet,
I guess I should have done more research on Neurontin, but you just figure you can trust your doctor. What exactly does Neurontin do to your brain? I also think that Worker's Comp should at least give you a 30 to 60 day notice to get off of your meds if they don't want to pay for them anymore. It sure doesn't seem fair to the poor patient. I do have an attorney and I faxed him a letter last week but he's obviously on vacation too. And thank you for the nice welcome.

Jules,
Oh my goodness, I've had the same thing happen to me. Several times while out driving I had to pull over because I completely forgot where the heck I was going. And here all this time I thought it was caused by my depression meds, which I'm also not getting anymore. I feel like you did, like I have a terrible case of the flu. I can't wait to feel better again. Did Topomax take the place of your Neurontin? I've never heard of that drug before.

RSD Mom,
Yes, several of my doctors told me never to just stop taking Neurontin but I had no choice in the matter. $250.00 bucks is a lot of money when you're on a fixed income.

Thanks again to all of you for your support. I'm not out of the woods yet, but I feel so much better knowing that I made it through the night.

Hugs
Kathy
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Old 12-30-2006, 02:00 PM #7
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it is written in several medical journals, that the dose of neurontin for rsd patients should be no more than 400mg three times a day, and that anything over that dose really does not help and can be dangerous. i take that dose and do well with it. i did try to up it when my pain got worse and got very confused and felt awful.
it is better after the 400mg tid, to try adding something else. hope you are feeling better
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Old 12-30-2006, 02:21 PM #8
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Default neurontin dosage

Wow. I'm glad they have done more extensive studies obviously on neurontin since I was on it in 2001 because I was up to 3000 mg a day... no wonder I was a zombie.. Neurontin was the reason I stopped taking so much medication becuase of how "drugged up" I felt.. I couldn't function on it.

-Heather
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Old 12-30-2006, 06:23 PM #9
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kathy...the last time workman's comp played around with me they told me that when they go into your case file they only read the top page..they don't want to be bothered checking the date or what else is in the file..so if someone looks at something in your file and doesn't put it back on top you usually will have a problem..i have called them myself and left several messages until the problem was corrected..i know it is very stressful to deal with them and all our other problems but the best advise i can give you is to never give up...that is what they want and we don't want them to win...so keep on trying and don't give up...linda
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Old 12-30-2006, 07:49 PM #10
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Default yes

yes, topomax replaced the neurontin for me. Only it has worked much better. Depending on how I have done, it has been lowered or upped on dosage. You have to go slowly with it also. Some people think they will not be able to take it -- it does make you feel funny at first. But, you do get used to it, and those feelings go away.

I have had RSD twice.. I first had it in my foot, and it gradually went away almost completely. I was down to 50mg of topomax a day then. When I was re-injured, and RSD came back, I was able to go up fairly quickly to 200mg, and now I am at 250. I really believe this medication is why I have not experienced any burning feeling this time - since I was already on the medication when RSD came back.

Between Topomax and calcitonin nasal spray, it covers the worst of my pain. I do have some problem with not being able to SAY a word now and then with the topomax, but my thinking is fine.

Jules
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