[erinhermes]

Hello all! Due to my really bad pain I was prescribed Neurotin. It has really helped with the burning and stinging sensation, but has caused some wicked, crazy dreams.

Is anyone else on this site also taking Neurotin? What is mainly used for?

Any help would be greatly appreciated!

Erin

[rach73]

Haven't been on much lately, not doing so good.

Just looked up your drugs and its a drug they mainly use for epilepsy but its also used for the treatment of neuropathic pain.

Your pain the burning sensations etc are what they would class as neuropathy. So thats why they are treating it with that. As I think they believe that the pain centres in the brain are all confused with fibromyalgia so it would be a way of calming them down. Sorry my post isn't as eloquant as usual, but Im a bit foggy!

Love
Rach

[erinhermes]

Thank you m'dear! All I do know is that it has really helped but causes crazy bad nightmares! When I see Dr. I today I'll talk to him about it! Are you better today?

love,
Erin

Originally Posted by rach73

Haven't been on much lately, not doing so good.

Just looked up your drugs and its a drug they mainly use for epilepsy but its also used for the treatment of neuropathic pain.

Your pain the burning sensations etc are what they would class as neuropathy. So thats why they are treating it with that. As I think they believe that the pain centres in the brain are all confused with fibromyalgia so it would be a way of calming them down. Sorry my post isn't as eloquant as usual, but Im a bit foggy!

Love
Rach

[korbi_doc]

Erin, I've just been prescibed this one, haven't started yet....sure don't look forward to nightmares....right now, life is a big one....don't even know if it'll help my pain, it's not a burning, stinging pain as I've heard described, but a hard painful ache in my muscles...can't raise my arms to dress 'til after some meds....glad it is helping you....let you know later.....

Dottie

[AnnieB3]

Erin, Any drug that affects the central nervous system has potential for affecting MG; and causing CNS side effects.


http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

www.pfizer.com/files/products/uspi_neurontin.pdf

Have you asked your pharmacist to check on drug interactions too? When you are on more than one drug, you can have interactions. And since Neurontin is relatively contraindicated in MG, I'm surprised the pharmacist didn't red flag the prescription.

Did you tell your neuro or pharmacist about the side effect?

And then if you add something like a quinolone while you are taking neurontin, you could progress to hallucinations. Geez!!!

So be careful, please. This can be dangerous stuff. If you're having nightmares, what else is it doing to you? I know you have pain of an undetermined source that is really hard. I hope they can figure out something for you that won't make you worse. Acupuncture? Seriously, it has been shown to work for pain.

Annie

[dog lover]

Hi Erin,
My 16 year old son is on neurontin due to Post Traumatic Stress Syndrome following an accident he had a couple of years ago. He takes it for anxiety. He also complains of having nightmares. We have talked with his Dr. about it and he is now on 400 mg in the morning and 400 mg at night. That is down from 800 mg 4 x a day. That has helped alot. His Dr. also suggested he take a Melatonin at night to help relax him. I have taken a melatonin at night myself for years. My son takes 3 mg at bedtime and I take 1 1/2 mg. You might run the Melatonin by your Neuro but my Drs. all know I take it and no one has ever said it could worsen my MG. How many mg's do you take per day and how many times per day? Maybe you could avoid taking them before bed and see if that helps.
Kendra

[rach73]

Just wanted to let you and everyone else know Im pretty poorly at the moment. Somedays I can get on and somedays I can't. Hence why I can go for days without posting and other days I have to put my 2 cents in everywhere!

I have emailed France again as I haven't heard from them and I telephoned the guy in Londons secretary to see if I could see him as a private patient. Unfortunately both these have drawn a blank at present.

Its now on a good day taking 120mg of Mestinon to get my eye to open, but I still have bouts of double vision.
It doesn't really resolve my weakness.

I am reading everyones posts and would like to say hi and welcome to our newbies, sorry if I haven't welcomed you personally yet!

Love
Rach

[Pat 110]

Hey Rach,

Sorry to hear you're not doing so well. I too go days or even a week not posting when I'm not feeling up to it. I'm sorry too that you haven't heard anything from France or London. Maybe they'll both come through at the same time! I hope you hear something soon. In the meantime, just keep hanging in there. We're all pulling for you.

Big Hugs,
Pat

[korbi_doc]

Whoa there, Annie & Erin, after reading Phizer's log on adversities for this drug, I'm not taking it...took 1 cap, no more....it's carcinogenic as well, that scares me, esp re pancreatic cancer; guess i'll stick to ibuprofen & naproxen for the pain....no wonder my pcp didn't like this drug, & the young neurosurgeon who prescribed it couldn't care less...he gets very angry when a patient doesn't just cowtow & do what he says....oh well, I just won't tell......

Dottie

Originally Posted by AnnieB3

Erin, Any drug that affects the central nervous system has potential for affecting MG; and causing CNS side effects.


http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

www.pfizer.com/files/products/uspi_neurontin.pdf

Have you asked your pharmacist to check on drug interactions too? When you are on more than one drug, you can have interactions. And since Neurontin is relatively contraindicated in MG, I'm surprised the pharmacist didn't red flag the prescription.

Did you tell your neuro or pharmacist about the side effect?

And then if you add something like a quinolone while you are taking neurontin, you could progress to hallucinations. Geez!!!

So be careful, please. This can be dangerous stuff. If you're having nightmares, what else is it doing to you? I know you have pain of an undetermined source that is really hard. I hope they can figure out something for you that won't make you worse. Acupuncture? Seriously, it has been shown to work for pain.

Annie

[alice md]

in any medication that is prescribed (or with-held) there should be a serious consideration of the potential risks vs. the expected benefits.

this is of course stastitical, as no one has a "crystal ball" that can tell which patient will respond how. and hopefully we will have better abilities to predict response or lack of, and potential risks much better in the future, but we still don't have those tools, in most medical situations.

there is no medication in the world without potential side effects. once you interfere with a certain biological system, you are always interfering with processes that you don't want to interfere with. some times this may be advantageous, and lead to the discovery of a novel treatment approach, but many times not.

therefore every treatment decission (even tylenol) should idealy be based on a joined decission of physician and patient based on a reasonable understanding of the risk benefit ratio involved in this treatment, and proper follow up to asses possible expected or unexpected side-effects, and the timely discontinuation of this treatment if those side-effects alter the risk/benefit ratio. (obviously long-term side effects are harder to asses, but should be taken into consideration).

every medication, including widely used antibiotics comes with a very long list of potential side-effects, and this should not lead to fear of using it, if it is clearly indicated.

as you well know from the Vioxx story, if a certain medication has an unaccaptable side effect profile for its indication, then it is removed from the shelves immadiately.

alice