There are so many autonomic symptoms. They involve a deregulation of a)the sympathetic nervous system...flight or fight is in high gear, and b) the parasympathetic nervous system. ..rest and digest....which sort of takes a hike. My first symptom was 4 pm anxiety everyday...something to do with cortisol levels, if I remember correctly. I had a very rapid onset last April, but the autonomic symptoms preceded sensory neuropathy.

Symptoms can include a rapid fall in blood pressure and a possible rise in heart rate from sitting to standing ("orthostatic intolerance,"(OI) best tested with a "tilt table"), heat and/or cold intolerance (sweating "appropriately" can be a problem, there are tests for this..."Q-SART). Also, there can be dry eyes, mouth and skin; excessive thirst; hair loss (!); insomnia and digestive issues like GERD, and a slowing of the digestive tract (or IBS ). Bladder problems are also common. My anxiety sometimes feels like "superanxiety," (but not panic). Big drag. Some of my symptoms are improving though....

You can Google "dysautonomia" or "autonomic neuropathy" for more info....and we also had a recent thread here. Neuros may or may not know what you are talking about. My cardiologist did my tilt table test, after two neuros failed to do so....turns out my OI is "severe." I'm about to have another at a "dysautonomia center" at NYU, where they analyze blood chemistry while they move you from prone to standing (not fun at all). Yet I think these measurements might lead to a treatment plan (none yet) and I'm horribly fatigued. Oh, unexplained fatigue is common with autonomic neuropathy.

However, you may just have plain old anxiety....which is the best possible DX in light of PN!

S

Gabapentin can also help relieve panic attacks as well. It is sometimes prescribed for that purpose. Its different for everyone. I found some of the actual good side effects of gabapentin were panic attack relief, migraine relief and reduced sensitivity to light.

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The problem is that our brains are the "most complicated things we know of in the universe, " as they say on PBS! Therefore, drugs designed to address neurological issues can have unexpected and sometimes antithetical effects. (For example, this med designed for seizures, was only later determined to be efficacious for neurological pain).

I'm glad you, Patrick, and so many people here, have a good response to gabapentin for pain... However, the makers of Neurontin were sued because of suicides that occurred among users who had never before been depressed. There is now a black box warning for this possible outcome.

My best guess is that my severe PN....whIch I noted, began with the acute onset of dysautonomic symptoms, followed a hypertensive and anaphylactic (!) crisis with antidepressant medication. I think it was a variant of serotonin syndrome. ...but I'll never know. I'm left hypersensitive to most medication....and I often have antithetical responses. It makes treatment really difficult.

So, as Elaine noted, gabapentin has an incredibly long list of side effects....most might be rare, but they are listed for a reason. I'm glad she warned Carrie not to abruptly terminate this med.....but it still might be the reason for her panic attacks.

We just unfortunately have a disease of our very poorly understood and highly complex organ...our brain...which is why treatment is often frustratingly indirect and dicey.

I am not saying I have a good reaction to Gabapentin or that i recommend it. I am merely pointing out that it is a very unpredictable drug. There are some good side effects, but by and large they are not worth it in my opinion. i think it is one of the least effective treatments for neuropathy out there. The people I know who do say it works for the neuropathy pain are almost always taking it in conjunction with another drug(s). For me, the only thing i see in it is as a sleep aid at this point. I would not recommend it to people with neuropathy. I would sooner recommend supplementation, most notably, B12, B1, R-Lipoic Acid, Magnesium and Vitamin D. B1 and R-Lipoic Acid actually give pain relief and all of the above supplements feed essential nutritional needs for nerve repair.

I agree that getting off the drug can likely cause panic attacks. For the same reason that it alleviates them I would think withdrawal could aggravate the panic attacks. The drug scrambles the brain signals, it is extremely likely.

Thank you Patrick for this much more detailed reply....I'm blown away by the insight and knowledge of so many people (like you!) participating on this forum. Such a boon to a newbie like me. It's just such a drag this disabling and painful disorder has so few treatments that are truly efficacious.....not to mention that many are just dangerous.

I'm taking all the supplements you mentioned. I also think Benfotiamine appears to help mitigate the pain. On the other hand, I also mistrust the unregulated supplement industry...I'm just taking it on faith (so to speak) what is on the label is in the pill!

Sylvie

Sylvie, I personally trust Doctor's Best and Life Extension products the most. They both have similar suppliers on many of their products that can be researched. Only because I have personally seen good results from them. I personally think with some of the supplements in the beginning you need to go with a very high dose to see results. This way you can see an impact. it also takes time for the body to start soaking them in. Then you can taper down. The key thing also is knowing how to take certain supplements. Some supplements must be taken on an empty stomach at least an hour before eating for maximum effect. Some supplements are ingested better with a fatty meal, some supplements in combination with others, etc. it's a continual learning process. I always take R-Lipoic and Benfotiamine at the same time and get real good relief. If I had to give up all my supplements and keep 2 it would be those. Google the clinical trials on a lot of these things. You will find some have multiple examples of efficacy in trial. The studies on Benfotiamine, B12, Acetyl L-Carnitine and R-Lipoic Acid are quite numerous in regards to neuropathy pain relief.

I also marvel at how stress, lack of sleep and eating unclean are immediate triggers for this condition. Anytime i even flirt with cheating and having junk I pay almost instantly. It also reminds me that I was able to bring my pain down and how it could be much worse if I am not vigilant.

Can side effects happen at any time or most likely soon after starting med? I've been on it awhile but have increased amount a few months ago. Prior to this I hadn't noticed any negative effects but haven't been that impressed with it either. It seems to work well for awhile and then an increase is needed again.

With autonomic, does anyone know if symptoms come and go or are fairly constant? My PN never goes away and rarely have a good day. I do seem to have symptoms of autonomic but could be unrelated.

I recently qualified for two DNA studies. Does anyone know if autonomic is common w/hereditary neuropathy?

Thanks!

Just like the desired effects of a medicine can happen immediately, or over the long term - so can the side effects develop immediately, over the long term - (or after a dosage change, etc.)

I will warn you that if you decide to go off the Gabapentin, do so very slowly. Again, everyone reacts differently - but I have some experience with coming off Gabapentin, and it was not fun for me. (Even tapering off slowly - that final step down to zero was a bear.)