Benign fasics and neurontin

[ARTB]

I have been dx with benign fasics after emg, mri and the normal neuro tests came back normal.  My symptoms started in June with buzzing and twitching but gradually the buzzing stopped and the twitching got worse.  Eventually the pain and cramping started promarily in my calves.  I feel reasonably good besides these neurological symtoms.  About a month ago my neuro perscribed neurontin when it seemed as if these problems were not going away any time soon.  I noticed almost an immediate reduction in pain and about a 50% reduction in fasics.  My question is neurontin a long term solution to this problem?  Are there long term side effects to this drug?  Can neurontin mask possibly more serious problems such as MS?  Are there any other avevues I should be looking down?  My physical condition seems good. Strength is good but I seem more shakey during and after exersion. Thank you for your time!

[CCF Neuro[P] MD, RPS]

Dear Richard:

Sorry to hear about your fasciculations.  Neurontin can help but if the disorder is bengin fasciculations then they will eventually go away on their own.  Each person is variable in the length of time that the fasciculations will persist.  We do not understand what causes the majority of these (30% seem to be related to a viral infection).  MS gives muscle weakness that is episodic and also can give parasthesias.  Fasciculations can occur but this is late in the disease, usually.  Since the symptoms are usually distinct, neurontin would not mask the muscle weakness and therefore would not hinder the diagnosis of MS, if you indeed begin to express the disorder.

Sincerely,

CCF Neuro MD

[Richard]

Sorry I forgot to ask earlier but has there ever been any corelation between BFS and shingles?  My mother has had shingles for some time and it seems like the pain as she describes is very similar with the itching burning feeling and the way in which stress seems to make the symtoms worse. I know that shingles is thought to be caused by a herpes type virus and that some may attribute BFS to a viral ourbreak. Just wonder if this area has ever been studied. My neuro has been wonderful, very concerned and understanding but I am not scheduled to see him for 5 weeks so I hope you can help me with these questions. Thanks again!

[C Jenkins]

Hello Richard:

You asked about Neurontin... and I'm here to inform you that it is a perpetual work-horse.  I say this because I've been on it since 1995.  Long-term usage is what the drug was designed for.  Actually, it's an anti-seizure medication built to perform on all forms of nerve seizure.  Most people don't usually put two-and-two together when it comes to "pain".  Pain is a seizure  form.  Plain and simple.  Like Epilepsy is a seizure form.

Be thankful that it's doing the job that you and your neuo hired it to do.  If it didn't work, you could have "canned" it and hired something else.  But then, that something else might house really horrid side-effects not associated with the Neurontin.  Side effects with Neurontin usually disappear fairly quick.  One of them is the "shakies" as you described.  Just take it easy and things will eventually return to near-normal.  I currently take 2700 mgs of it per day.  No shakies, just pain reduction.  There was a time when I was maxed-out at 3600 mgs per day before my craniotomy.  Hence, the perpetual work-horse label.  It can be pushed to meet the problem and reduced in recovery.

Have I answered your question?  Hope so!  Have a good one and rest easy knowing that it is for your long-term dilemna.

Sincerely,

C Jenkins

[Catherine]

Hi, I too, am on Neurontin for my pain and problems. I posted earlier. I have muscle cramps, spasms and numbness all over my body,but especially when I walk. I was prescribed many other meds that made me Very ill. I have been on Neurontin for about 4 months now, and I find it is helping with the general all over pain, but I still hurt when I walk. I also have 'attacks' when I hurt like He&* all over and just want to stay in bed. I am on 300 mgs, maybe I need to go up a dosage/

good question.

cats

[C Jenkin]

Hey Cat:

I wish I could survive on 300 mgs per day.  I take 3 - 300 mg caps 3 times a day.  Based on the level of pain you've described, a slight "push" would definitely serve to reduce... and probably make life a bit easier.  Let's all face it, chronic pain is virtual Hell and normalcy for us is in a page of past history.  But, with the help of decent meds like Neurontin (and there are precious few) we can at least enjoy ourselves in a world we did not choose but somehow managed to secure.  So, "push" the pain aside and say "no" to the depression game which usually follows pain around like a puppy dog.  Talk to your neuro about it and have a good one.

Sincerely,

C Jenkins

[Catherine]

OOOPS! Made a mistake earlier...have I mentioned that being in chronic pain puts my brain in neutral? I was on 300x 3 times a day, I saw my dr yesterday and he changed me to 400 x 3 times a day. I hope it helps. I find it helps take the 'edge' off hte pain and makes an otherwise unbearable day bearable. I still can't do much, like exercise. It's killing me because I used to be quite active. but, what can you do. Housework is another chore - I just hired some cleaners. I guess you just have to learn to cope. Good luck to all, and let's hope one day we find out WHY we are in pain. I would love to know why and what is causing it......


cats

[CCF Neuro[P] MD, RPS]

Dear Richard:

A type of Herpes virus, the chicken pox virus is the etiology of shingles.  It can cause parasthesias, can be painful, but not fasciculations per se.  However, about 30% of people who have benign fasciculations reported a viral illness within one or two weeks.  There might be a connection, but nothing is definite.  As your symptoms fit the category of benign fasciculation I would think that yours were not shingles related.  You do not describe the usual outbreak of vesicles associated with zooster.

Sincerely,

CCF Neuro MD

[Richard]

I didn't mean to say I might have shingles I was just curious to know if you knew if anyone had ever looked into the similar symptoms of BFS type pain and that pain from shingles.  Thanks for your responses.  In my original question I asked about any long term side affects of neurontin I didn't receive a response from CCF unless C. Jenkins is part of CCF.  If you could pass on any information that you have it would be greatly appreciated.

[C Jenkins]

Richard.  No.  I am in no way a part of CCF, nor am I a physician.  Past history has made me more than learned when it comes down to the subject of medications, how to use them properly and what to do to beat side-effects.  Trust me... Neurontin IS the best neurological pain med out there for use in the long-term arena.  Side effects are minimal and adjustment coupled with tolerancy give the drug an A+ in my book.  I've a unique situation in that my brother-in-law has a PhD in Pharmacology and now, instead of filling scripts or teaching it, he invents them (honeycomb by honeycomb).  As for me?  NF-2 turned me into a virtual medication guinea pig.  The experiences have surely enlightened me.  (Dilantin grows gums... Morphine Sulphates instill a deadly "nod" that requires Methylphenidates for focus, Tegretol pounds your liver, etc... the list goes on and on.)  Just use the Neurontin, Richard.  You'll be glad you did solely for quality of life.

Hey Doc RPS... How are you?  I didn't mean to undermine your expertise.  Lord knows you have more than enough of that to share with the world.  Sometimes you just can't get around to everything and everybody.  More questions are asked in an hour than a wise man can answer in 7 years.  "The pain of the mind is worse than the pain of the body." (Syrus)  At times, that is so.

Catherine?  I know why I have pain.  It went undiagnosed for years and years.  Neurofibromatosis.  NF-2.  The rare one.  I certainly hope the push to 400 mgs 3 x daily helps.  It should... and the best comfort of all is knowing that you have 2400 mgs remaining before you reach the 3600 mg max-out.  Take care.

Sincerely,

C Jenkins

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD

[marc depuydt]

I have taken neurontin 1500 mg each day and I was very tired,
so tired that I have to stay in bed for houres during the day,and the hyperekplexie doesn't dissapear.


Marc Depuydt

[Barbara]

My daughter has been diagnosed with Benign Fasiculations.She is in her 40's and is a R.H.at our hospital.This summer she had a lot of problems with breathing and her heart.They did all kinds of tests and are thinking maybe a virus and now this.She just had a test for LYMES as she had to have a tick surgecly removed it was so deep. Are there any hospitals that are known for dealing with this? Some I am thinking of would be Abington Hospital in Abington Pa.//Lehigh Hospital in Pa.//U.of Pa.//or is there some in other states//
Thank You////e mail address////***@****

[CCF Neuro[P] MD, RPS]

Dear Barabara:

Lyme disease does not usually cause benign fasciculations.  Any physician can send off a lyme titer.  If you are worried, antibiotics can be given.  I would see your family physician or any of the places you mentioned could do a work up.

CCF Neuro MD

[Mary]

I had back surgery in 1998.  That went fine, but the test (a discogram) the worker's comp. insurance insisted I have left me with nerve damage in the L4-L5.  Since then I have "drop foot"my dr prescribed neurontin for the pain in my right leg.  400 mg to increase until the pain is managed.  Is this OK? When I asked him about the length, he said until the nerve is healed. Can nerves heal? What at the effects just starting out. I have had 800 mg today.  I need to continue working my full time job. Anyone know what I am talking about?  What did I get myself into?