Akgirl

When your pots goes away for periods of time, do you continue your medication?

Here is the weird part, the fainting records just like a pots faint, my heart rate goes sky high and my bp drops and then I faint and sometimes go into convulsions? My neuro thinks its from pots but its weird that everyone else dousnt also faint from this??

I am a pots fainter, but I only faint when I stand and yawn and stretch. (Aside from a few random times I just stood up minus the yawning stretching). I had a positive TTT and was fainting multiple times a day. Now I am on meds wich stopped the fainting for about a month and then the fainting started back up again. So the doc doubled my BB about 2 wks ago. But this morning I fainted again!!! I am wondering If others faint when yawning and stretching too? Is this even a pots thing?? I try to stand up slowly and not yawn but its like my body is craving it!! The bigger the yawn the better, in fact sometimes I go into a yawning fit and I can't stop it!! I will have tears poaring down my face and be yawning like a maniac. Any thoughts or experiences would be great!!

Oh wow I just googled LQT. Yikes!! I was fainting only from POTS, so nothing as serios as you!! GOOD LUCK

Oh wow! For me atenolol works pretty good. When I stand up my heart rate goes really high really fast and my bp drops and I faint and go into convulsions. So the atenolol keeps my heart from going to high. So for what happened when you took the beta blocker??

I am on the couch or in bed all the time these days I am waiting to get into physical therapy so I can get back my life! But I sleep ALOT and read.

I dont know if this helps ot not but After my TTT test I was told I had dysautonomia with a sublet of POTS. I was put of atenolol and florinef for the pots and Prescribed neck deep aqua therapy for the dysautonomia. What meds is your doc putting you on?? How I understood is that pots is a condition and result of dysautonomia or autonomic dysfunction.

That's excactly what I get! It's like a bomb goes off in the inside of my skull!!

I think spider veins etc. are mostly hereditary. My mom has horrible veins and out of the 6 girls in my family only three of us got them. I am the only one with pots and have severe blood pooling and don't have any visible veins at all. As far as stockings, I wear 40 hz for a minimal 8 hrs a day for blood pooling. And my sisters with the vein probs where only 20-30 hz. Stockings. My insurance covers mine because they were a prescription, but you can buy them off eBay as well. Jobst brand is the best I have found, but Yeesh they are UGLY!!!

I have had a gradual onset of pots and dysautonomia since I was very young. But in the last 6 months it has really kicked into high gear and I have gotten sicker and sicker. With all of my other symptoms I also developed exploding head syndrome...... Yes it's a real thing!!!!! I thought I was developing a severe mental condition but found out that it is very benign and there's not a whole lot of information out there about it! I was curios if anyone else has this and if possibly it's related to pots????

I am like some of the others. I always had a excellent long and short term memory Intill I got sick. now my long term is still great but short term is awful! I have to set a lot of reminder alarms on my phone

I would also love to know the target heart rate he recommends

Thanks so much!! Bebe127, I hear you with the insurance!!! It's so expensive! And then of course I start thinking... Well, if it worked so good why wouldn't insurance cover??? Is it a hoax??? Wich I know is not true, but the thought does run through!! Hopefully between doubling the atenolol and acupuncture ect. I can stop having bad convulsive syncope and at least get get back my license!! Thanks everyone for your input! It really helps

Dizzysillyak, do you only see a integrative doctor for your pots? Right now I am seeing and being treated by a neurologist. I am kind of nervous to ask him about anything off the beaten path!! He seems VERY western medicine

I am following my docs orders, and am still having convulsive syncope and other bad pots symptoms!! I am really having a hard time keeping my spirits up!! It feels like no matter what I do I still am NOT better!!! I am currently on 4 medications, salt loading, and wearing compression stockings constantly. I am now to the point were I am going to start some non traditional routes and was wondering of anyone has any thoughts about this?? Tomorrow I have my first acupuncture apt. And I have also been rolfed. I am thinking about seeing a herbalist?? Any ideas or experiences would be great

THANKYOU all for your input!

Thanks!! I never considered that, I appreciate the info

Hello, I have been having really bad constant headaches lately I was hoping to not get on another medication as I am already on atenolol, florinef, celexa, and omeprazole. So I have been taking over the counter meds ie. tylonal and Ibupropion even some aspirin to try to ward it off. Every morning I wake up with a headache and every night I go to bed with one. I am trying to stay positive about my pots and I am starting aqua therapy and have been eating healthy, but living with a constant headache is dragging me down!! I am wondering what medication your doctor has prescribed to fellow headache suffers?? I have a upcoming apt. And I would love to have some names of medication that has worked!!

I think if you responded so well to the ssi that's great!! I was on celexa 40 mg a day when I was diagnosed with pots. So obviously didn't work on me, but now I am on a steroid and beta blocker as well as the celexa and am feeling better. So I think the trick is everyone has a unique combo that works for them! As far as wondering if you have pots anymore, I think you just found meds that work for you!! Yaaah!!

I just started getting rolfed and aqua pt, it really seems to be helping I feel like I am starting to recover a bit!!

Good luck!

Siggggh... Wow this is crazy! My life was so good and now...... So not

Thanks!!

I would also love to know more about the interaction as well!! I am on florinef and omeprazole right now my doc and pharmacist has never said a word??

Thanks!!

I don't think it's seizure related because i just had a 3 day veseize rule out seizers for me (wich I do not have ) but I get the same thing you are describing. Especialy in stores and in places with a lot of movements and bright lights. It feels like my eyes are a split second behind and it makes feel dizzy and nausiated. I always thought I had anxiety, I am glad to hear its probably a pots thing!!

I am just finished a 3 day veeg study and they said I have zero seizure activity. So i just got off kepra!! The doc says I have convulsive syncope and that if I control the pots then I control the sycope. When I stand still for about 10 min my feet turn dark purple and you can actually see the top half of my body turning whiter and the bottem have darker. Is this normal for pots? Or is it just that I have pale skin. Also is flunking the TTT enough for a proper diagnose? I live where we don't have acess to a large selection of neurologists, so unless I head out of state I am stuck with the one I have.