pinky Posted July 29, 2016 Report Share Posted July 29, 2016 hello to all! just wanted to introduce myself as a new member and give a brief description of my ailments that brings me here. first off I need to converse with others with like problems because I feel alone and isolated. I have autonomic neurapathy and also a peripheral nerve disease called C.I.D.P. which is the chronic version of guillion barre, also anxiety and depression problems which are being successfully treated. am 55 yrs. old and retired in dec. after 31 yrs. because It was just too much for me anymore. put in for disability and received it in 5 months. Am taking I.V.I.G infusions for the cidp and mestinon and florinef to help with the dysautonomia. I take paxil er and Ativan for the anxiety and it works. I have a particular set of dysautonomia problems that I have never ever heard of anyone else having and maybe will talk about that soon but just wanted to say hi to all of you, sincerely, kip Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 29, 2016 Report Share Posted July 29, 2016 Hi Kip, Glad to have you on the forum! Hopefully you will find the same fellowship that I and many others have through the years. ☺ It's so important to have people that can truly understand and relate! Katie Quote Link to comment Share on other sites More sharing options...
pinky Posted July 29, 2016 Author Report Share Posted July 29, 2016 Quote I have had the dysautonomia for probably 17 years and the cidp for 11 years and wear braces on both legs from the knees down, use a cane also. I believe the cidp and the disautonomia are related somehow even though they didn't present at the same time, and have had immune system problems and viruses since I was very young. the worst part about the disautonomia is that sometimes after I eat after 10 or 20 minutes I will get tachycardia and my gastric system will completely empty, the blood pressure goes up at first and then crashes completely rendering me incapacitated. with the blood pressure very low, my legs go numb. have a hard time breathing and can't see very well, and after a very hard spell for about 15 minutes, the cardiac system begins to normalize slowly. I have gotten to where when it happens I will go from the toilet to the cold shower and lay there with cold water running on me to help get the BP back up faster. and this helps. It takes 2 days for me to get over one of these and am afraid one day one of these could take me, that's how scary it is. Quote Link to comment Share on other sites More sharing options...
pinky Posted July 29, 2016 Author Report Share Posted July 29, 2016 thank you so much Katybug! you have been so kind in helping get me set up and in making me feel welcome. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 29, 2016 Report Share Posted July 29, 2016 I just read the additional info above. Many dysautonomia patients have slow guts/gastroparesis. But, I'm with you.....mine moves way too fast. Much of this part of my problem is from Mast Cell Activation Syndrome (MCAS) which is not uncommon in dysautonomia patients. I am on several antihistamines to help control it but I have some specific (and rather obscure) food triggers that it has taken years to figure out (rice, bananas when under ripe, grapes, pineapple, cilantro/corriander.) I don't have typical food allergy symptoms like itching or swelling of the lips, mouth, tongue or breathing difficulty. It manifests itself in nausea, vomiting, abdominal pain, and diarrhea. All of which can last for hours to days from one ingestion. It will also trigger presyncope/POTS, excessive sweating and flare my migraine. Quote Link to comment Share on other sites More sharing options...
corina Posted July 29, 2016 Report Share Posted July 29, 2016 Hi Pinky, glad you found us! Quote Link to comment Share on other sites More sharing options...
pinky Posted July 29, 2016 Author Report Share Posted July 29, 2016 so how would a person know if they have mcas and what would they take for it? you know I was getting an ivig infusion yesterday and two MS patients were talking about taking something for mast cells and they were sayng something about biotin and having a compounding pharmacy make it up for them. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 29, 2016 Report Share Posted July 29, 2016 My daughter is taking enteric coated biotin. What I read about biotin is that if you take it on an empty stomach, and the enteric coated kind which dissolves in your intestines, it works as an anti-inflammatory. If you take biotin with food, it acts as a digestive enzyme. Hope this helps you! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 29, 2016 Report Share Posted July 29, 2016 This is the best paper I've found to date on MCAS. It's long but complete. Be sure to review the tables embedded in the paper as they contain a lot of information. MCAS is a very complicated issue and hard to diagnose so I try to direct people to this paper as explaining it here doesn't really give the full picture. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 4, 2016 Report Share Posted August 4, 2016 Hi Pinky So happy you found the forum ? You probably know this but I was just thinking about the Mestinon...it can cause gut issues and a much quicker pass through. I have chronic constipation but taking Mestinon it's more like IBS. The other thing I was thinking that may or may not be relevant is that I have postprandial hypotension. So when I eat my BP drops really low and especially if I eat too much I will fall asleep or basically pass out. It is really hard to wake myself up. It was scary especially at first before I realized what was happening. And even now it still is a bit to think my BP is that low. Not sure if this helps at all ... wishing you the best! Welcome!! kaitlyn Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 4, 2016 Report Share Posted August 4, 2016 (edited) Hi Kaitlyn, I suspect I might have PPH. Were you "officially " diagnosed with PPH, and, if so, what was the testing? I've been reading about it but the testing is unclear in what I've found. Thanks, Katie Edited August 4, 2016 by Katybug fix spelling Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted August 5, 2016 Report Share Posted August 5, 2016 Hi Katie - Not officially diagnosed with PPH - just know, or am fairly certain, from my own research and experience and taking my BP after meals. The research does seem a bit unclear but I remember reading something about checking BP every so often during the hour or two following eating and some specifics of how much it would drop. The articles I read were all surrounding research completed in nursing homes ... gees. I think aside from folks with Dysautonomia its probably fairly uncommon. Everyone can get a little tired after a meal but for me it's that x100. I am in the very bad habit now of not eating anything until later in the day because I don't want the BP drop. In any case I didn't feel (yet) that the diagnosis mattered as much as me understanding what was happening. ? Kaitlyn Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 5, 2016 Report Share Posted August 5, 2016 Thanks, Kaitlyn. I think we probably read the same information. ☺ Quote Link to comment Share on other sites More sharing options...
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