New PN sufferer - is Gabapentin safe or not?
 

Recently been diagnosed with:

Motor and Sensory Axonal Polyneuropathy.

Recently upped the dosage from 600 mg to 1200 mg and had these side-effects:

1. In my eyes. They are a little blurred and twitch a bit
2. My balance is off
3. Lethargic

Worried about what is happening to me :mad:
Urgent action needed now.

Action Plan:

1. Stop drinking alcohol. A common Cause of nerve damage. I have been a heavy drinker for many years.
2. Cut down on sugar usage.
3. Start taking Vit. B12 supplement. (Jarrows Methyl B-12 5000)
4. Start using Thiamine/Benfotiamine.
5. Change my mind set from depressive to positive with a need to step up and accept things more for what they are and how they are.

Any tips from anyone would be appreciated. At a new low right now.

Does anyone in your family have symptoms such as yours? Thank you for your reply.

Yeah. My father has PN and takes the same medication. But he is very old and he never had this at such a young age. I am only 44 years old.

But it is what it is.

Think about Kitt's question as where you go from here is a little different if your neuropathy is hereditary.
As for the Gabapentin, you don't really tell us whether you are suffering from the burning and electrical buzzes that Gabapentin may help with. It doesn't always help, but since it is a fairly safe medication it is routinely the first thing tried. For myself, and I have hereditary neuropathy, the Gabapentin does keep the burning and zaps under control. The visual blurring has not gone away as a side effect, but the fatigue and balance issues did, so your side effects might not persist. Mainly you have to determine for yourself if the medication is worth the side effects. You are not really at a therapeutic dose yet - 1800-2400mg.
The more you tell us about yourself the more help you will get. How old are you? Has the doctor suggested that the cause is alcoholic? Are your B-12 numbers low? Most nerve patients should supplement B-12, but low number alone can cause reversible neuropathy. What tests gave been done?
Lots of helpful and knowledgeable people here, don't be afraid to ask specific questions. Your plans sound sensible, but tell us more about where you are with this. Working? Hobbies? How has this affected your life?

Just a thought, with something hereditary such as CMT symptoms can become evident when you are young, old, or in between. Or they might never be that evident.

Susanne brings up some very good questions to think about.

Thanks for all your kind advise.

I am 44 years of age and have had a very active life in sports, but also on the social side and this is why I mentioned alcohol. I have been given the electrical tests and they came up positive after complaining about the bad sensations I was having in my feet. True enough I was found to have a mild neuropathy. However, the Dr's were interested as my father is a 10-15 year sufferer of PN. But they found no connection between the two of us through blood tests taken. Which was a surprise. I am still awaiting other results like B12. The decision on stopping alcohol and other things on my list in my action plan are all my idea as I want to test to see if my symptoms can be reduced or at least slowed down.

My main question that I feel no one can really help me with is how much time to I have? My work requires me to be on my feet as I am a professional soccer coach. Will I be able to continue with this? If not am I doing damage to them now by still working and occasionally running and demonstrating. Even though recently I have slowed right down and try and Direct more and have others do the work for me. It may be better just to change my approach to my work. I guess the next stage is to go to complete management where all I do is talk and not deliver.

No one knows in my work that I have this condition. I am trying to hide it.

Kitt. What else can one take other than Gabapentin for the fuzzing in the feet? If I do go up to 1800 mg will my fuzzing just stop, but then have many side effects?

Wow so many questions Kitt. Thanks again for talking to me. I hope you are OK and finding a way?

The side effects you are mentioning, Kirky--
 

--are very, very common with Gabapentin/Neurontin, and, indeed, with many of the other anti-epileptic medications used for neural pain and abnormal sensations (parastheses). They are at least partly due to the central nervous system downregulating effect these are designed to have (they were originally developed to control the spread of seizures).

Other side effects that are common with these drugs are fluid retention, carb craving, and weight gain. Many find, however, that with time the side effects lessen as the body adjusts to a given dosage.

Many who have neuropathy use a combination of meds to control the sensations; the most common pairing is an anti-epileptic like gabapentin or pregabalin with a small dose of anti-depressant like amitryptyline (Elavil). The two often seem to have a synergystic effect on the sensations. Some also use more traditional opiate based pain relievers, or some of the synthetic opiates (i.e., Tramadol).

It's very hard to determine what the ultimate prognosis is with neuropathy--a lot depends on the cause and what types of nerves are affected. "Axonal" refers to the primary damage here being to the axons, the transmitting "cable" of the nerves, as oppose to damage to the myelin sheathing, which can be thought of as the "insulation" of the cable (at least in those larger-fiber sensory and motor nerves that have such sheathing--"small fiber" nerves that subsume pain and temperature sensations do not have this sheathing so damage to them is by definition axonal).

You may need a lot more extensive work-up at a neuropathy center--if the cause is even findable (there are a lot of us around here who remain stubbornly "idiopathic").

Do see, as comprehensive test listings:

www.liajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

You are not, as far as I know, damaging your feet by exercise, running, etc. you may find that you have more pain on days that you are very active, but this is not a sign that you have damaged them. I do not know how they determined through blood tests that you did not inherit this, unless the testing was the very extensive and expensive Athena panel. Did your father drink excessively?
If it is an alcoholic neuropathy you should pay attention to the supplements recommended here, and if you stop drinking you should recover, at least partially.
If it is a hereditary neuropathy it will progress, but it may be very slow. It is impossible to predict the future with this disease, and while I know how hard it is not to worry, you may be able to function at your current level for a long time.
As you are an athletic person and still retain the coordination to do your job, I think the outlook for you is excellent. It is hard not to catastrophize when you are first hit with this, but you will develop coping skills.
Gabapentin does not relieve the burning in all cases, but there are many other ideas here, some over the counter, which provide a measure of relief.
My symptoms started in childhood with extreme lack of coordination, progressed to numb toes by my early 30's, and have taken over my arms and legs at 52. As Kitt said there is no pattern that we can point to for when this hits and how it progresses, but I think you will find help here.

I was wondering too as Susanne pointed out. What type of blood tests were done. DNA blood testing thru Athena Diagnostics would be the way to go. However, it is very expensive even if you know what DNA blood testing should be done. Also, just because they do not find anything that does not mean that you do not have a type of it. (Speaking mostly about CMT). I hope you get an answer soon.

Also, in the case of CMT overdoing can exacerbate it. There is a fine line there.

Good responses here! ;)

If you are taking any RX drugs for anything, you should list them now. Antibiotics, to lower cholesterol, vaccines, OTCs

History of trauma or surgery to the back, or knees or legs?

Some idiopathic PN is environmental, meaning toxins. Alcohol is only one of many that cause PN.

If you are smoking, it is time to quit.

We have a nice support thread on quitting alcohol here:
http://neurotalk.psychcentral.com/thread104096.html

If you are low in magnesium and don't eat magnesium containing foods, nerve problems are only one manifestation of this. Soaking in a bath of epsom salts in lukewarm water will reveal if you feel better afterwards. 6-8oz in a bathtub...don't use really hot water.... it may sting or hurt then.

People who do not eat fish (salmon) or flax containing grains, become low in Omega-3's and these nutrients repair the nervous system. So diet is very important.

Here is a site which might help you. Scroll down to "Summary".

http://www.ncbi.nlm.nih.gov/books/NBK49247/

CMT is also known as Hereditary Motor Sensory Neuropathy (HMSN).

As far as polyneuropathy it just means several nerves are involved.

You referred to electrical tests which were positive. I assume you are talking about EMG/NCV testing. Referring to CMT Type 1, nerve conduction speed is slowed. In CMT Type 2, the nerve conduction speed is usually normal or mildly slowed but the responses to the stimulus are small. Just a bit of information concerning the testing.

As far as alcohol, moderate consumption is fine. Alcohol was taken off the medication alert list in 2004. If you over do then you would have balance problems, etc. and that would not be good for those of us who already have that problem. But moderate consumption is not a problem.

Mrs. D,

You mentioned for people who do not eat fish or flax become low in Omega3's. I recently purchased a bottle of Carlson Fish Oil Omega-3's Dha & DPA with lemon taste soft gels, 1000mg's. I am one of those people who rarely eat any fish; once in a while, cod or tuna from the can.

I have been taking about 4 per day of Benfotiamine 150mg's. and once or twice a week one 100mg R-Lipoic Acid (get too hyped with more) and one of the Stabilized B-12 Methylcobalamin a few times a week. For some reason; not sure have been hesitant and have not taken any of the Fish-Oil (which one of the posters had recommended).

After reading your input; might give it a try. (Not sure; but I think the possibility of this coming up on me could be part of the reason I am hesitating.)

Your thoughts would be appreciated regarding this would be appreciated.


Gerry

If you do not eat enough fish or flax products, you have to get your Omega-3's from somewhere.

Start with 2 a day. That may be enough for you. Take with food.
You can stagger them or take together.

Carlson's is a good brand. You chose well.

Susanne and Kitt. Thanks for all your thoughts and information.

I am unsure really. I guess that is how it is for all of us. This is why I have come to this internet site in the hope of getting people's opinion.

My Neurolgist diagnosed me with Mild Motor and Sensory Axonal Polyneuropathy. But I know that this could also be CMT Typre 2? I wish he could be more specific, but for now this is all they can tell me from the conductivity test and blood test. I have not had any DNA tests. I hope to get to the bottom of it myself and this is why I want to try everything like stopping alcohol. My Dad was not a big drinker.

Through my research and this includes information on CMT, they say if you don't use it then you lose it. I certainly don't want to over do it and I am now very aware of my condition and careful not to do too much excessive movements in work and in play.

I really like chatting to you both as I know no one who is in my condition and situation. Any help and advice is greatly appreciated. I actually want to meet people with my condition too one day.

At this present time, my father and friends all tell me not to worry and just get on with it. So for now I'm just going to have to do that. However, it's me that feels these nasty sensations in my feet and naturally I wish to somehow reduce them or at least get used to them and learn to manage them.

Thanks.

There are over 100 causes of PN. The hereditary types are only one of those.

If you wear athletic shoes? Even lacing too tightly will numb and then irritate your insteps where most of the nerves are.

There are alternate ways to lace shoes to take the pressure off this part of your foot:

https://www.google.com/search?q=alte...iw=981&bih=662

I use corkscrew elastic laces and do the alternate hole type lace pattern. It really takes the pressure off my instep and my numbness and pain went down considerably. The laces give and stretch and do not pinch the foot instead.

I don't know how anyone can diagnose CMT with a blood test that is not a DNA one. So don't assume you have this, quite yet.
You can do many many things for your feet at this time yourself.
The shoe lacing trick is only one of the things you can do.

Good luck.

It seems that you do need DNA blood testing. That should tell a whole lot. And, as I mentioned, EMG/NCV testing can also tell much as far as CMT 1 or CMT 2 and family history of course. And, I do agree that there are many many causes of PN. Good luck.

By my research and by reading the threads on here. I feel that CMT in the worst case scenario and not knowing if I have this bothers me. I wish I could find out. I hope that possible future tests can help answer this for me. I hate not knowing what the cause of my problems are :(

If I do have CMT 2. Which my neurologist said could be possible? Would my exercise and training or type of work make it worse? Am I doing my feet no good by continuing with my profession? Is it possible to have CMT 2 and have it in a mild form or have it develop slowly? Or is this type of PN just bad news all round?

DNA blood testing thru Athena should give you an answer. As said before, it is expensive. I am not suggesting that you do have a type of CMT but it probably is worth looking in to. A good neurologist who knows CMT can be of help to you.

However, no one, not even a doctor, can tell you how you will end up if indeed you do have a type of CMT. CMT is progressive no matter what you do. There is no magic bullet, supplement, etc. You deal with the symptoms as they come along. I wish you well.

So in regards to the medicine, my doctor prescribed it for me and I am going to start it, but I do not have tons of cramping, some burning, but it is not constant. My feet are numb to touch, they freeze all the time, can feel if stabbed with something, but that is it? My concern is if I start the medicine, now in my 30's when my symptoms get worse as I age will the medicine still work. I don't want to take it until I really need it. Am I being crazy? The dr. Said it might get rid of some of the numbness or slow progression? I am not under the impression that it can slow progression, which I could be completely wrong. I forgot to say my hands are affected as well.

the post talks about "fuzzing" but I am guessing that means "buzzing" My feet really light up as I put it when I exercise. The buzzing intensifies. I feel the reason is the activity makes more blood come to the area and so the nerves fire more??? I don't know if that is the case...

Yes I am of the same opinion. I wish I could cope with the symptoms and not have to take it. But I felt I needed it. I started with only 600 mg for about 6 months. I have recently increased it to 900 mg. apparently you need to be taking around 1800 mgs for it to work at its best. But I find that I can cope with this amount and the side effects are minimal. I am naturally concerned that what will happen in 10 years time. I am only 44 years old and exercise is part of my profession being a full time sports coach. So far I have managed to hide my condition to my work. For how long plays on my mind. I hope it can be till I get to my 50's?? If only I could really know exactly the cause of my condition?

I have CMT 2, and I have tried to continue hiking, on level ground, for as long as possible. I use two poles as my balance and awareness of where my feet are are both very poor. It is my understanding, and I have tried to convey this, that you cannot exacerbate CMT through sensible exercise. Exercise to the point of exhaustion, however, is not advised, and may cause a flare or injury just as it would in other people. In the past year I have lost a lot of ground, however, and seldom walk any more. This cold winter has also made me a shut in.
If it is CMT, you will also not slow progression through exercise, although you may strengthen the unaffected muscles.
In short, you cannot really hurt yourself and may help yourself through exercise, especially as you seem conditioned to it.
If you have sensation in your feet, and a good sense of balance and can tell where your feet are ( yes, in more advanced cases of PN it is possible to fall over because your feet got tangled up while you were sitting. It happens quite a lot to me.) you are probably fine with the level of exercise that you are used to. There is no reason implicit in having PN or CMT that you should cut down your level of activity. Doing so may result in weight gain which will stress weakening muscles more than exercise.
You will have to learn to let your body be your guide in deciding how much is enough and when to rest. Sufficient rest is very important, and you may have to learn to balance out your life more, I believe you mentioned an active social life so if you are a "burn the candle at both ends" kind of person that will not be best for you.
I just want to reassure you that continuing the level of physical activity that you are accustomed to is not going to affect you as much as you seem worried. You can go by how you are feeling.
If you have limited sensation you have to be more careful, but I have not seen you mention that.

And --
 

if it does turn out to be CMT it will progress. You will be quite aware of it. You would then find that you just cannot do what you used to do including hiking, walking very far, etc. It does happen. As Susanne posts that she has lost ground in the last year. I have in the last few years. Symptoms of CMT did not rear their ugly head until much later in my life. It could be of great help if you did find out whether you have CMT or not. Again, no one, not even a doctor, can predict how you will end up if indeed you do find out that you have CMT.

Todd MacCullough who played for the Philadephia 76ers a number of years ago ended up having to quit his career when he found out his trouble was Charcot-Marie-Tooth disease. Here is a site about it:

http://sportsillustrated.cnn.com/bas...ulloch_out_ap/

Julie Newmar is another one. She played Catwoman in the 1960's Batman series.

Susanne hi and thanks for your personal information. It is so good to talk to people like you. In my opinion, it is far better talking to you than my Dr.

My situation is this. Recently divorced and finding my way back in my life. Just. But it has taken its toll on me I feel. That and the transition of a new job in a new part of the world. Coupled with the fact that it is thousands of miles away form my son, friends and family. I sometimes suspect that all this negativity and stress could have something to do with this.

My life has really been in sport. I regards myself as physically capable right now, but defiantly noticing problems in my balance and sensitivity with my feet. That and the uncomfortable feeling I now have with them. I am sensitive. What I mean by that is that I am sensitive to any kind of change in my body. Always been this way. So I have noticed this very early on I guess. I have always had excellent balance and coordination and I have suddenly noticed this regress.

My goal is to somehow push my way into Mgt. without anyone knowing that I have this condition. But at the same time try and save the muscles I can and have with an exercise plan. You are right. Nothing too vigorous. But enough to stop atrophy or at least strengthen the other muscles that are not affected. It is only my feet. Even though the EMG test said that it was mild in my hands too. But at this time I have had no loss of feeling and they are fully functional.

My neurologist reckons I still have time on my side and said exercise was a good idea.

For me right now, the hardest part is twofold. Firstly I hate taking medication and now I need it and must adapt to it. I hate side effects. Secondly, is the new uncomfortable sensations in my feet. They naturally worry me and it is the not knowing what is going to happen and how much time I have that plays on my mind. You mention cold weather. Is it normal to be more affected in colder conditions?

Thanks for chatting.

Yes, cold weather is very much of a problem for many PN cases and all CMT. As Kitt said we all have cold feet and legs all the time, and keeping warm is a challenge. I wear long underwear in the house- and keep the thermostat at 72.
My husband and I were just discussing whether we really should move to a warmer climate- the rational answer is probably, but being from the Philadelphia area and being very attached to it we could never move.
My hands are numb now, especially in the mornings. My son, at 29, can no longer play the piano for more than a short time. He is very affected and frequently turns his ankles. You must watch those ankles- if it is CMT they become very thin and fragile. Some store bought bracing might relieve your mind.
The stress that you describe in your personal life could easily have brought out your symptoms- stress, medications, other illnesses, often activate latent CMT, or aggravate existing PN. It is important to get a handle on that as much as you can. Your plan to move into management is a good one. My son is a university professor in China, and feels that teaching is a good career for someone who is disabled, as he is likely to be, having severe symptoms at his age. While you cannot tell how fast and far your disease will progress it makes sense to plan what you can for the future.
If your doctor suspects CMT and mentioned it, and your father has symptoms, that is probably what you have. You cannot assume, and neither should your family, that because his symptoms are mild that yours will be too. On the other hand you do have to get on with life, you are too young to quit, and are still in relatively good shape. My father acted like there was nothing wrong with him, but he drank constantly to kill the pain, and could not get out of a chair. I have a half sister who wore leg braces from early childhood. It affects everyone differently. I was clumsy and uncoordinated as a child, and walked on the sides of my feet.
On the other hand, it will not hurt to study and follow the guidelines here for supplements and diet and lifestyle guidelines, as they have been found to help many people. If yours is not CMT after all, you may be able to benefit from them.
Eventually you will get used to the sensations in your feet and legs and it will not be so distracting. My legs are currently numb to hip level. I really do not know how I manage to walk, but I don't think about it much at all. The first few steps are always hard, but then I just keep going and it gets easier.

Susanne hi. I am sorry to hear of your condition and your families conditions. If it is CMT, which is suspected, at least I have had a good time of it upto now. I actually now worry about my son and have I passed this onto him? But I have told myself to not let that get in all the other mess in my head too. Just too much.

I am fit and can walk and run. I have symptoms, and yes it will progress. But you are right I am in charge here. I have to decide what is best, what to do and what not to do. I am a teacher by profession. It is something I can defiantly do in future years if needed.

Good to chat with you again.

You're not being crazy, but I don't know about that doctor. If gabapentin could/would slow progression, people wouldn't have to increase their dosages periodically until the medication no longer worked. I'm also curious where he got the notion it had any effect on numbness(?)

Everyone is different. My last neurologist pushed it on me for burning pain that was keeping me up nights; wrote a scrip for 300 mg. capsules (I forget how many per day). I asked him to write it for 100 mg (the smallest they make) instead, and I'd take it "as needed" and titrate it myself—if I needed more/ a higher dose, I could call and he could write another one. I'm very sensitive to gabapentin (and I've since met others who are also). 100 mg at night was enough to carry me through 24 hours, and I didn't even need it every day.

I had only taken it a few times when I started R-Lipoic Acid (RLA). The RLA stopped the burning pain completely within a few days, and it hasn't been back since (except if I eat something I shouldn't) and I haven't needed/taken the gabapentin since.

Doc

Wow. More great information. Much appreciated too. I will look into this other stuff.

Got caught out in the cold again today. I had two pairs of socks on too, but it still didn't help. Standing on the cold concrete of the streets must be a no go for me for any length of time.

Get me back to CA ASAP.

Thank you. I wondered about that as well. I go again in February, and am going to research as much as possible before I go back. I with there was a doctor whose specialty was hereditary neuropathy but have not found one yet. The first neurologist didn't want me on anything until I needed it and said we would treat the symptoms as they come. But he is now 2 hours away from me. I may keep looking.