looneymom Posted September 11, 2014 Report Share Posted September 11, 2014 Thought this article might be of interest to someone. I plan on asking Tyler's doctor about some of the supplements that are recommended. Tyler is already taking several of them but not at a high dosage. Does anyone take Alpha-Lipoic Acid and how does it affect your blood pressure?http://www.newyorkbuyersclub.org/resources/recommended-reading-files/24-NEUROPATHY.pdf Quote Link to comment Share on other sites More sharing options...
Natops Posted September 11, 2014 Report Share Posted September 11, 2014 This article has a lot of great information. Thank You for posting! Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 11, 2014 Report Share Posted September 11, 2014 My dad (neurologist) just told me to take ALA. I took the first dose this morning. It will probably take awhile to see the effects. If I remember I'll let you know in a couple of weeks. Otherwise remind me. I am not yet diagnosed with dysautonomia but have a probable trigeminal neuropathy of the mouth and tongue. That should be the easiest way to see an effect. Quote Link to comment Share on other sites More sharing options...
blueskies Posted September 11, 2014 Report Share Posted September 11, 2014 Thanks Rachel,excellent article! Taking it to hospital when I am admitted late this month. If they can't come up with anything to help my ERYTHROMELAGIA I will offer this up to them to give them some ideas!Blue Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 11, 2014 Author Report Share Posted September 11, 2014 I have found another article that may be of some help. I am hoping that my son is going to get some relief from his scalp allodynia with his current treatment. But as I am reading, neuropathic pain is harder to treat the longer it goes on. This article goes into more detail about about the brain receptors and other medications that can be used.BTW Has anyone tried Ketamine cream or through an IV?http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 11, 2014 Report Share Posted September 11, 2014 Rachel,I have not used ketamine on myself. I do work with horses and it is a powerful horse tranquilizer in small doses so please proceed carefully if you choose to try it. Katie Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 12, 2014 Author Report Share Posted September 12, 2014 I plan on asking the doctor about it. I have actually found studies that in very low dosages it helps with allodynia. However, I have also found research studies that high Cam Kinese II levels cause allodynia. I can't wait to get this stuff out of Tyler's body. Quote Link to comment Share on other sites More sharing options...
lewis Posted September 14, 2014 Report Share Posted September 14, 2014 RLA is a much better form of ALA. The article mentions acetyl l.carnitine and b complex, both increased my nerve pain Quote Link to comment Share on other sites More sharing options...
Goschi Posted September 14, 2014 Report Share Posted September 14, 2014 For a couple of month, I took RLA, L-carnitine, B-complex and Magnesium. I don't know if the did something for my (small fiber) autonomic neuropathy..However, all of them acted very "stimulating" on me and often sent me into "fight or flight" surges, thus I eventually stopped taking them. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted September 14, 2014 Report Share Posted September 14, 2014 Hi Rachel,Thank you so much for sharing the interesting articles. I have been taking ALA 600mg daily for quite some time now and have found I do get some pain relief from it. A few times I have forgotten to take it and noticed my pain level was higher. Since starting on a mast cell cocktail a few months back I have realized an enormous reduction in neuropathic pain however for the pain I am left with I feel the ALA helps. I have not noticed that ALA has any effect on my b/p. I hope you find something that will help with Tylers pain. My heart and prayers go out to him. Janet Quote Link to comment Share on other sites More sharing options...
gjensen Posted September 17, 2014 Report Share Posted September 17, 2014 Thank you for posting this. This was good timing. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted September 17, 2014 Report Share Posted September 17, 2014 ALA is not for autonomic neuropathy, it is for sensory neuropathy and proven only in diabetic sensory neuropathy studies. I have taken high does of it without side effects or benefits. It's also used in the Mito Cocktail Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted September 18, 2014 Report Share Posted September 18, 2014 I take ALA for small fiber sensory neuropathy not for autonomic neuropathy. Quote Link to comment Share on other sites More sharing options...
TCP Posted September 24, 2014 Report Share Posted September 24, 2014 The first link it no longer accessible Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 24, 2014 Author Report Share Posted September 24, 2014 Try again. I was able to get to both articles just now. Quote Link to comment Share on other sites More sharing options...
TCP Posted September 24, 2014 Report Share Posted September 24, 2014 The first one still not working Quote Link to comment Share on other sites More sharing options...
corina Posted September 24, 2014 Report Share Posted September 24, 2014 TCP, both links are wokring for me also. Could it be your browser? I use Google Chrome if that is of any use to you. Quote Link to comment Share on other sites More sharing options...
TCP Posted September 25, 2014 Report Share Posted September 25, 2014 I'm on chrome. Juts tried now and can't get it. Never mind Quote Link to comment Share on other sites More sharing options...
corina Posted September 25, 2014 Report Share Posted September 25, 2014 Sorry, I don't have any advice for you! Quote Link to comment Share on other sites More sharing options...
TCP Posted September 26, 2014 Report Share Posted September 26, 2014 Tried again and it's still not working. Shame as I would liked to have seen it. Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 27, 2014 Report Share Posted September 27, 2014 So, I tried out ALA for two weeks or so for my burning tongue issue that might be neuropathic in nature. My tongue was only getting worse, and the ALA made me smell bad, so I quit taking it. Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 28, 2014 Author Report Share Posted September 28, 2014 Hi NymphSorry the ALA did not help. Does anyone know what is causing the burning tongue? Could you have developed food allergy or an allergy to a medication? Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 29, 2014 Report Share Posted September 29, 2014 No, at first I thought it was oral allergy syndrome, which can have a similar effect, however that disappears once you stop eating the food. Mine did not. And as it comes and goes and varies in severity, I do not think that its a medication as my medications are consistent. There is some research indicating thay the syndrome might be caused by trigeminal neuropathy. As that's the most common form of neuropathy in Sjogren's, I think that's probably it. However, I am waiting to see a neuro until I am tested for POTS by a cardiologist. Once I have some evidence in hand, as it were, I will look into possible neuropathy as a cause for both syndromes. Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 29, 2014 Report Share Posted September 29, 2014 Gosh, no wonder I'm so tired! Quote Link to comment Share on other sites More sharing options...
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