jensen8503

I took Mestinon for a week recently and had the EXACT same reaction. You could see my tounge twitching. IT was extremely uncomfortable well more annoying. I went to the ER because my tounge felt so thincka nd swollen and they told me that I was having an allregic reaction to the medicine. I would call and check to see if you were too. Vanderbilt stopped my meds immediately ( which i do not reccomend, taper off!) and they said they will start them back next week maybe to see if it happens again. Isn't it the weirdest feeling ever? Be careful, DO you happen to have Mast Cell with your pots? Some people I have spoken with have had this reaction and they too have mast cell. Think that has anythng to do with it? Lndsay

I have always gotten sick in a car from childhood, I get it now too in the front seat. It always happens. They say it is normal at Vanderbilt. That alot of people experience this, so I waould say yes it is a normal thing for POTS.

My doctors at Vanderbilt told me that I also have Mast Cell Activation with my Pots among other things. Does anyone else here have that problem? I was wondering because I have had some pretty strange things going on lately. Like I was going into anaphalaxis over little things. I was having a swollen tounge and twitching all over my body, even my tounge was twitching. they say I have mast cell but I dont know why, or where it is from. Can anyone PLEASE help me with this. ANY input would be greatly appreciated. Thanks, Lindsay

I was inpatient research in June. My hose are on order, they dont carry the 30/40 ones here so they had to order them. I have not yet tried them. I hope that they will help. I have not yet stabled out from my trip to Vanderbilt and hope it happens soon. I dont know what is going on. Thanks I look forward to the hose now!

Melissa, Thanks for the nice hello, I am not sure everything I have yet so far I know POTS, Mast Cell Activaton, Im Hypovalemic, OH, Syncope, Fibromuscular dysplasia. i am kinda lost still to everything. I was hoping mine would get better but over the years it has just gotten worse. And everytime I get one symptom controlled ( or get used to it) another one happens. It is so difficult to deal with. Well, thanks for being so welcoming.

Hi, I have had all sorts of symptoms with my POTS and other diseases. Even with the pots diagnonsis from Vanderbilt ( along with many other diagnosis) I am very often told to breath in a paper bag that I am hyperventalating. ARRGGHHH! I am so sick of it. Sorry my question is this. I have had some numbing and tingling before and I have had some stroke like symptoms, but now EVERYTIME I sit down my feet turn almost black and it is so painful that I cry, can anyone tell me how to fix this or get it to stop. I have tried using a cane to walk per someones advice but ofcourse it is no help. Right now I feel like my feet and calves are going to pop, it is so painful, no pain meds help I was wondering if something could help to prevent it. Can I myself do anything to help this right now? Thanks for your help. Also, does anyone here have Mast Cell Activation? How does it affect your POTS? Mine is rough. Just wanted to know if anyone else here could give me some insight. They put me on Beta Blockers at vanderbilt but I started going into Anaphalaxis about two weeks after I got home. Any ideas? Your ideas are appreciated. Thanks, Lindsay

Hello, I am new here as well, I have been diagnosed with POTS, Hypovalemia, Mast Cell Activation, OH, and NS. When I had my first attack I was suffering from stroke like symptoms on the Right side as well. I was 17 years old. My right arm and leg balloned up and turned a lovely shade of blue. I wsa like that for about 30 days and it went on and off after that. I had trouble writing and even walking after that for a long time and sometimes still do. I was told this was definately not the pots doing this to me. Its good to know others are hearing the same. I am glad to know that it is not unusual for these symptoms to happen. I am just glad i now have people who are just like me. It helps to be able to talk to people who know how you feel. with much hope, Lindsay