Anoj Posted May 23, 2012 Report Share Posted May 23, 2012 Anyone try this drug? My endo wants to put me on it to see if it helps pooling. This is after a recent test showing possible early peripheral autonomic neuropathy in my feet. does anyone think that improving neuropathy would improve pooling? i like that he's willing to try. he wants me on it for a month to see what will happen.my a1c levels came out ok (no diabetes). i was glad that he acknowledged you can have neuropathy without diabetes.i'm also having a nerve conduction test (EMG) by a neurologist next week. i don't know what they will do with the information. for people with POTS, how can this information help?thanks! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 24, 2012 Report Share Posted May 24, 2012 I think Neurontin is used for the pain of neuropathy. Correct me if I'm wrong. I would think only a drug that improves nerve function might help with pooling (if it's true that nerve damage is causing blood vessel dysfunction). I'm not sure such a treatment exists - although I've heard some good things about Alpha Lipoic Acid. The Dr. said Neurontin can help pooling?? I believe the EMG looks at large fiber nerves. I guess since other testing showed possible peripheral neuropathy, the Dr. wants to finds out which nerves are involved? Quote Link to comment Share on other sites More sharing options...
Anoj Posted May 24, 2012 Author Report Share Posted May 24, 2012 yeah ... i was reading, and noticed that - pain. hmm ...he didn't say the drug would help pooling. he was hoping it would. kind of an experiment.what do you mean large fiber nerves? is there a small kind? should they be looking at something else? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 24, 2012 Report Share Posted May 24, 2012 I think neurotonin is for pain too.Yes, there are several types of nerves grouped into large fiber (ability to move mucles) and small fibers (control autonomic and sensory functions). An emg only tests the large fiber. If there are autonomic symptoms associated with suspected neuropathy the gold standard test is a small fiber skin biopsy, easy test, follow by qsart. This is called small fiber neuropathy. A failed ttt will point you toward this type of testing, depending on the response. FYI sf nerves are found in the blood vessels and are what constrict the blood vessels, causing the blood to be pushed up to brain against gravity on standing. When those nerves fail, the body has a back up symptom and goes into fight/flight response and pumps out extra norepinephrine. Mine triples on standing, because my blood pools because of nerve damage. The is called a hyperandregenic response. I get hypertension/ high HR on standing as a result, but under stressed circumstance they will suddenly drop and I collapse. I suspect that people that faint or get hypotensive right away on standing have lost their ability to respond with norepi.I have sfn which is caused by autoimmune disease and defective immune system. There are many treatments, but it really depends on what is causing the autonomic neuropathy. Diabetes is a primary suspect, but so is high insulin. If your fasting insulin hasn't been checked I would check that too. I have high insulin and normal glucose, my a1c has only elevated as reaction to some medications like steriods. The causes for sfn are many. Some times they are unable to find the cause and it is called idopathic. That is what happened with me at first, but now it has become pretty clear that my body is attacking itself because my body is unable to fight off things it is always in a state of fight.The best kind of neuro to see is one that specializes in treating autoimmune neuromuscular disease. They will have the skill set to evaluate this. Not all neuro's are equal, there are many different subspecialties in neuro field of study. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 24, 2012 Report Share Posted May 24, 2012 FYI sf nerves are found in the blood vessels and are what constrict the blood vessels, causing the blood to be pushed up to brain against gravity on standing. When those nerves fail, the body has a back up symptom and goes into fight/flight response and pumps out extra norepinephrine.OMG, thank you for this whole explanation! I didn't realize the nerves are actually within the blood vessels. Thought they were kind of just nearby - not doing their job. It all makes more sense now. Quote Link to comment Share on other sites More sharing options...
E246 Posted May 24, 2012 Report Share Posted May 24, 2012 Yes great thanks - that really helps. Quote Link to comment Share on other sites More sharing options...
gertie Posted May 24, 2012 Report Share Posted May 24, 2012 I'm not sure Neurontin helps pooling, but it does help neuropathy & it also calms my nervous system. It alsohelps migraine pain. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 24, 2012 Report Share Posted May 24, 2012 Glad to help. Just remember that small fiber autonomic nerves are found in a part of the body that is considered autonomic. They are every where. So cardio symptoms might seem unrelated to gi symptoms, when they actually are both autonomic functions. Thing about the things your body should do on it's own, you can have symptoms in any of those areas, ie, sweating, moisture, breathing cardiac, gi, well you get the idea. Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 25, 2012 Report Share Posted May 25, 2012 I use it for chest pain... it helps. Quote Link to comment Share on other sites More sharing options...
Anoj Posted May 27, 2012 Author Report Share Posted May 27, 2012 Such a great explanation, thank you so much Arizona girl. I'll look into finding a different neuro Quote Link to comment Share on other sites More sharing options...
Anoj Posted May 27, 2012 Author Report Share Posted May 27, 2012 One more question - you said there were some treatments for sfn. Can you explain what some of them are? Thanks! Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 28, 2012 Report Share Posted May 28, 2012 Arizona Girl your last sentence states it best "Not all neuro's are equal, there are many different subspecialties in neuro field of study." This is so true and I hate to say it my Neuro who specializes in "Autonomic Dysfunction" has yet to impress me... Quote Link to comment Share on other sites More sharing options...
comfortzone Posted May 28, 2012 Report Share Posted May 28, 2012 If you throw joint hypermobility into the mix - that puts a new spin on sfn as well - meaning many with JHS also have sfn - and they are as yet uncertain as to why - a few theories of the rather common sense type - such as connective tissue/nerves/muscles are all wonky with generalized joint hypermobility - maybe pressure here or there or stresses on this and that - could ruin the cfibers some how... dunno. Joint hypermobility people also respond differently to a variety of medications than you'd expect in normals - more pooling with clonidine is an example... sfn is equated with vasomotor instability/hypermobility too - as well as diabetes and other better known links ... and of course idiopathic as mentioned. Neurontin for 'nerve pain' is the treatment I've heard most often - doses can get as high as 800mg three times a day - it can be a wt. gainer so you have to watch for that especially if prone or overweight to begin with - just watch the scale. Most of the time I thought treatment was really aimed at the causative factor ... but who knows maybe there are treatments out there ... mine doesn't hurt all that bad - more of a feeling like someone is gnawing on my toes and like my arms are tingly/mildly asleep at times - sometimes feet tingle... Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 28, 2012 Report Share Posted May 28, 2012 I did use Neurontin for a bit but after a few weeks it made me mean as ****. I also use the Alpha Lipoic Acid. Quote Link to comment Share on other sites More sharing options...
targs66 Posted May 28, 2012 Report Share Posted May 28, 2012 Interesting what Monstrosity said about neurontin. I haven't taken it myself - but have three different family members who took it for various reasons (brother with MS, mother with fibromyalgia, sister in law - not sure why she took it!) and they all said it affected their moods/emotions in negative ways. Quote Link to comment Share on other sites More sharing options...
Anoj Posted May 29, 2012 Author Report Share Posted May 29, 2012 Nowwhat! How do you know if you have joint hypermobility? Is it possible to have EDS without having symptoms? I don't believe I have this symptom, not that I notice, anyway. Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 29, 2012 Report Share Posted May 29, 2012 Interesting what Monstrosity said about neurontin. I haven't taken it myself - but have three different family members who took it for various reasons (brother with MS, mother with fibromyalgia, sister in law - not sure why she took it!) and they all said it affected their moods/emotions in negative ways.its too bad because otherwise the drug was helpful. Quote Link to comment Share on other sites More sharing options...
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