New Here!

[LW6279]

Hey Eveyone,

I'm new here. I was on Neurotin for over 10 yrs for Fybromialgia and went toxic and now a year after I stopped taking the meds I am here. Is anyone else in this boat? I would like to find out if this going to be with me now for the rest of my life or will it go away. It has been just about a year since they took me off the meds and I am currently on no meds by my choice.

LW

 

[Screamy]

Welcome aboard LW6279 sorry for the reason you had to join, but, plenty of people here will help you with your question! Great place to be!

 

[huskymom]

Welcome to our humble site! I had taken Neurontin for about 2 years for muscle pain and weakness caused by lack of nutrition. I have been off of it for several years now, but take plenty of other stuff

I hope that you find the right combination of drugs soon!!

 

[Nakamova]

Hi LW6279, welcome to CWE!

Did going off the Neurontin trigger seizures? If so, what kind of seizures? Since you are med-free, are you following other approaches to help control your seizures?

Best,
Nakamova

 

[LW6279]

Thank You Everyone,

I have simple and complex partials. I use to be an EMT so only went to the ER for the 1st one. Now I have them weekly or daily. Looking for a new neuro at this time. To scared to try any medications. I have bad reaction to most medications and don't even take advil I'm all natural stuff. I only eat what I cook so no additives and stuff. EEG, MRI other test all come back normal. My DR. I was seeing Retired and have not found one who is not in it for the money and will really listen to my issues and not just want to push drugs on me.

Lot's of love,
LW

 

[Nakamova]

I don't if this is an option for you, but neurofeedback may be worth trying. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

 

[Malla]

Hello well, because I am not diagnosed yet, I am on Lyrica (pregabalin) I was given this drug when I eas admitted to a mental hospital for my seizures (obviously they thought I was mental) however, Lyrica is an anti convulsant, used to treat partial seizures with or without secondary generalization in adults.

Lyrica (because of it's anti anxiety effect) is also used in psychiatry. And for illnesses like fibromyalgia and others that are known for neuropathic pain.

I have had no side effects from Lyrica. Except a dryness in the mouth that dissappeared two weeks later. I am also a : I DON'T WANT TO TAKE DRUGS person but I accepted Lyrica because I feel no side effects and it too helps me feel good psychologically. It eased my anxiety for seizures and I only gained a little weight - not much to speak of though.

Since I have an injured back/neck, Lyrica also helps against the pain and helps me have a more normal life despite the injury.

I would recommend Lyrica if you're a "no drug person" because of the side effects ..... but still need to treat seizures

http://en.wikipedia.org/wiki/Pregabalin

Good luck, hugs Malla

 

[Endless]

Hi, LW.

Welcome to the forum!

I found this paper interesting. It says about 30% of people have spontaneous remission of seizures when they aren't on anti-seizure meds. That means 70% don't have spontaneous remission. Some other research supports these statistics, some doesn't.
http://jnnp.bmj.com/content/75/10/1376.full.pdf

Odds are it could be with you for life. Some people try the modified atkins diet or gluten free and it makes a difference. Do a search on these and you'll get many threads to look at.

To do a search, go to the "search" function at the top of the page (NOT "search this thread" - look higher). Click on it. Type in "Gluten free" or "modified atkins"

 

[LW6279]

Malla & Endless,

Thanks for your response I will look into the artical. Malla, Lyrica is not an option for me but thank you for your suggestion. I have a hard time with the medications and at this point I am thinking of trying NF.

Lots of Love,
LW