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Treatments/Side Effects Sensory Neuropathy

I was placed on Klonapin )1/2mg am and 1/2 mg pm) to treat burning sensory neuropathy. The Klonapin is causing me to wake up with head tremors and feelings like an extreme hangover, had the same thing occur on Ativan. I have only been on the Klonapin 2 weeks but wonder given this side effect if I need to be weaned off. Have already tried Doxepam, Zonalone Creme,  Elavil,Dilantin, Tegretol, Tylenol/Codeine, Neurontin, Ultram,Percoset,Darvoset, etc, with really bad side effects and zero relief. Wondering what alternatives to prescription meds can be used for pain relief from small fiber sensory neuropathies? this began from a drug reaction but another MD feels it could be a combination of the drug reaction and viral syndrome together. These have not abated for 1/1/2 years. MRI's and 100 rule out tests normal. Only nerve studies showing snapped latencies, and quantitative test showing some heat deficits.  Some Body MRi's show tendonitis.. This is not distal pn  but rather began in my face,neck,upper back and chest, then months later spread, but primarily is worse in the upper torso.  I also have rashes in the areas of the burning that become more pronounced with intensity of pain. Also have arthralgias and bone shin pain.
What physical therapies or alternatives to prescription meds might help this condition. I heard something called EMS which is like a TENS unit but not as severe helps? but that Tens would only increase the pain with small fibers as vibration sensations are unbearable. I am extremely sensitive to meds and looking for any alternatives so that I can function outside my home which I have not been able to do. Now that its cold this is escalated by the cold, and clothing against the skin hurts.  Any ideas.??????Although this has been determined to be peripheral nerve problem 1 of the 6 Neuros I saw says its brain chemistry and is therefore permanent.  How does one come to the conclusion whether something stems from peripheral nerve problems or brain chemistry.  Or whats permanent and what has a chance to resolve in time with maybe only some residual affects? The doc who thinks its brain chemistry now wants me to try some medications used to treat psychiatric conditions which my other neuros disagree and say will be harmful and will not help this condition, only serve to create problems.  Any suggestions on what I might try or what therapy/rehab/diet/supplements/ alternatives might help... I feel like the human guinea pig and each person wants to experiment.  Unfortunately all experiments have failed.  Can you tell me if Klonapin causes this reaction also if it should be stopped, especially if it is doing little for pain.  I don't think I should be waking up with head tremors and hangover feelings and since I was pulled off Ativan for the same thing and they are in the same class, I think I just may not be able to handle this class of drug. Sorry this is long I am at my wits end an wondered what you may suggest for sensory/small fiber neuropathies with severe pain and skin hypersensitivity..besides traditional meds.  Thank you for helping and all that you do on ths forum. Since we already know I have a small fiber sensory neuropathy it makes me totally reluctant to let this one Neuro allow an associate of his to test psych treatments on me.  While I realize meds to treat neuropathies like Elavil cross into both areas of psych and neurology- this doctor is not talking about these type of meds or treatments but what they use on people who are psychotic.  Ihave had perfectly normal mental evaluations. Other then the physical problems so to experiment with such treatments seems more harmful to me.   This doctor feels this type of neuropathic pain that would last over 1 1/2 years that has not graduallly improved over time assumes I therefore have a brain chemistry problem vs a Peripheral Nervous system problem that was triggered by a drug or viral syndrome.   While all the other neuros disagree!  Any alternatives to help me you can offer I would greatly appreciate. Sorry for the length of the post.
Sincerely,Kara
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Avatar universal
thanks for the comment.

CCF Neuro MD
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Avatar universal
You need to check out RSD! go to harvard university medical page and check out there forums and chats page they have plenty of stuff on RSD... these all sound like the same symptoms..
Linda
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Avatar universal
Dear Kara:

No, small fiber neuropathies are not due to central nervous system chemistry abnormalities.  They are periperal in nature.  However, the pain pathways are indeed central with the peripheral fibers going into the spinal cord and then up the spinal cord to the thalmus and then to the cortex.  One can get a pain syndrome from thalamic stoke.  But yours does not sound like you had a stroke.  Certainly a post-viral syndrome of sorts could, and I say could be involved.  Klonepin would help your anxiety about the problem, and may help alittle.  It is certainly not going to treat much of the pain.  The other medications that failed such as neurontin or tegratol are medication types that would actually help with the parasthias.

CCF Neuro MD
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Avatar universal
Thanks for your help. Some of my neuros think small fiber others say paresthesias. As apparently even nerve conduction studies are not good diagnostic tools to reveal these conditions.  I know there is a punch biopsy done but does that only provide to confirm small fiber sensory neuropathies or does it provide any add'l info.  I originally had a classic drug rash and paresthesias after being given an antibiotic for a bronchial cough that may have been viral as no cultures were done.  Just two last questions. Can a brain chemistry problem induce such a thing, or is a post viral syndrome more in line with these symptoms. Also if the Klonapin helps to take a tiny edge off pain is it advisable to discontinue it given what side effects I am having? My docs have various opinions, so wondered what you thought?  Thanks again for any more input you might add.  Also have any idea about the skin reactions with the more intense burning? Is this common with these conditions?
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Avatar universal
thank you very much for the comment.  sometimes we just don't have all the answers.  It really tell us that this is the art or practice of medicine and keeps us humble because we don't have all the answers.  Thanks again for you insight and struggle.

Sincerely,

CCF Neuro MD
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Avatar universal
Kara,
I feel you pain, years ago my burning started on my back, it started out with the feeling that something was crawing on the area the the burning started shortly after. This got so bad for me that everything bothered my skin on my back my shirts, my hand or someone rubbing my back. It got to the point that showers hurt so bad that I had to take baths, but couldn't wash my back. I would sit in pain to the point that tears would fall.
One night sitting in the living room I asked my daughter to get a wash cloth and ice so she could hold it on my back on the spots that burned.  The cloth hurt so I got my daughter to rub the ice cube on the spots, Something really stranger happened, the spots started blistring.
When I went to the family doctor and told her the problems I was having and even showed her how the ice blistered my buring spots, all she said was that it was nerves. She gave me Valium and it help.
Years later It started in my legs this got so bad that I went to a nero, he did a nerve conduction test he found that I had pinched nerves in my pelvic area. The only thing that helped me was weight reduction and exercise. I still have numb ness and a little stinging but I've learned to live with it. I know I haven't helped, I just want you to know your not alone. God bless Good luck
A friend
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Avatar universal
Dear Kara:

After reading your posting, I am afraid that I would have little to offer.  You have tried most all the medications that one would use for your problem and your side effects or no effect has been spread across the board.  Small fiber neuropathy is usually associated with diabetes, alcoholism or collagen vascular disease.  However, some think it can be part of a post viral syndrome.  Since all your tests are normal, and the EMG would not diagnose a small fiber problem it doesn't seem like your problem is a systemic disease.  I wish there was something I could add.

Sincerely,

CCF Neuro MD
Helpful - 0

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