julieph85

I'm surprised Hopkins is on there. I live 10 minutes from them and they have done the least for me. Mayo was the best and Vanderbilt did nothing but confirm I have pots which I already knew

I have the exact same thing. I think it has something to do with blood flow. My BP has wild swings so it wouldn't surprise me

I have Baro receptor dysfunction, it isn't baroreflex failure, it's actually the opposite. It is like they are on a hair trigger, particularly the ones in my carotid arteries. They are so hyper sensitive that turning my head to the side, swallowing, and talking makes me feel like my head is going to pop with pressure and I will pass out. It is terrible and is one of the most debilitating aspects of my pots. I want to believe that this receptor hypersensitivity is typical with pots yet every pots specialist I have seen says they have never seen it before... No one knows what to do about it

I'm pretty sure it does help a lot with fatigue. The reason is because it is a potent TNF alpha inhibitor. It has been proven in studies (sorry don't have which ones, but i have read them in journals) that high TNF alpha levels are what causes the fatigue in many autoimmune disorders. Therefore- that would lead you to believe that its anti tnf effects are what fights the fatigue.... just a thought.

My doctor has been trying to get me to take midodrine for over a year. I'll admit it, i'm too scared. I've tried beta blockers and labetalol, both made me way worse. I also tried an H1 H2 regimine per Dr. Afrin. Those also made my dizziness way worse as well. I'm just so scared to take the midodrine. I'm afraid i'm going to either make myself worse, or mess with my heart. I've gotten really bad anxiety about my heart ever since i've had pots because i get episodes of very scary SVT. I'm always so afraid when i take a new drug it is going to make me get SVT again. Does anyone else feel this way? I wish i was more brave. I think every day that i could be not taking something that would help me. Then the other part of me says, the other drugs were supposed to help me too and made me worse...

I have a borderline low TSH (but still just normal right above the cut-off), normal T4 and a very low abnormal T3. I've been to a few doctors including 2 endo's about that T3 and they all tell me it means nothing and as long as my TSH, T4 is normal, and i have no antibodies, it is just incidental. That feels wrong to me. I believe in my heart my pots is some how related to thyroid dysfunction. I'm hyper pots and your thyroid regulates your bodie's sensitivity to adrenaline. I am extremely over sensitive to my adrenaline. Also, how can a very low T3 be normal? Not to mention my Dad has Hashimoto's.... it's all very confusing and frustrating. They also always refuse to do the reverse T3 test. They say if my T4, TSH is nomal, there is no point.

I took 12.5mg once a day when I first got pots. It exacerbated my OI to the point I could barely stand at all. Horrific dizziness. However, that was just my experience and I would not let that stop you. I have that problem with any drug that reduces heart rate. Even my mcad drugs make my OI worse. I believe my pots is a compensatory mechanism to pooling so when I dampen my body's fight to get blood up to my head bad things happen!

I got diagnosed with MCAD by Dr. Afrin in November. I started Clarinex and Pepcid about 3 weeks ago. All was well initially. My flushing episodes after eating carbs have stopped completely. However, I noticed no change in my POTS at all. Last weekend I began feeling dizzy and started getting really frequent PVC's. it's gotten progressively worse over the last 7 days to where I can't even stand up I'm so dizzy. I also have the terrible head aches and brain fog that go along with hypo perfusion. I'm making the assumption that blocking my histamine is also blocking whatever compensatory mechanism my body was using to correct the blood pooling so its making my cerebral hypo perfusion worse. Last time I tried a beta blocker the same thing happened. I guess the mcad is serving some purpose for getting blood flowing up to the head? Who knows. I feel so frustrated because I was feeling so good. I haven't even been on this forum in months because I've been so good. Now I'm sick as ever. It's interesting my heart rate and shortness of breath isn't worse though. Actually that is better. This dizziness is horrific though. It's like being in a boat you can't get off of

I was on super low doses of both. I think it was just really making the underlying cause worse

Mine does the same. I also experience lightheadedness and flushing and facial numbness. This reaction only happens if there are carbohydrates in what I ingest. I'm leaning towards a mast cell issue.

Jangle, I've done both labetolol and propranalol. Labetolol helped with the tachy episodes and it significantly lowered my Bp. (I was hypertensive at the time). I noticed an improvement in the hyperandrenergic part of my pots. I imagine it would block some anxiety symptoms as well because in my case, it made me pretty zombie like. I remember sitting staring at the tv with my mouth hanging open, lol. It was like being in a constant daze. The biggest thing I didn't like about it was it made my scalp tingle really bad, which was annoying and is a common side effect. It also worked synergistically with my ANS in the sense that when I would get more vagal at night my HR would drop into the low 50's and would make me feel really sick and lethargic. The propranalol was terrible for me. It severely dampened my body's compensatory HR increase which made my pooling worse, which of coarse made my dizziness and shortness of breath worse. I remember being so dizzy and short of breath on that medicine I couldn't stand for more than 1 to 2 minutes at a time. Being on propranalol was the worst my pots has ever been. Makes me shudder remembering it. Labetalol did a little of the same thing but not as bad. I would never take any alpha or beta blocker again because it only makes my underlying issue worse- the pooling and vasodilation. If your getting bronchi spasm during an attack, have you ever had a 24 hour urine histamine done? If your having mast cell issues it could cause hyper pots symptoms. I was sure my mast cells were ok and then I had that test. My histamine is 6 times normal limit. No wonder I'm so dilated! In my opinion, a trial of clarinex plus Pepcid is worth it to see if it helps with the hyper symptoms, which would definitely point to mast cell.

They didn't do anything other then the IV because my labs were all normal. It was definitely a cytokines/inflammatory response because as soon as all the redness around it went away I stopped feeling so sick. The symptoms are also identical to what happens when im in a bad autoimmune flare- systemic inflammation. This lead ls me to believe my body over reacts to inflammation- too much TNF alpha and interleukin. Pre-pots I did not have this reaction to inflammation even though I had RA. This makes me think the over inflammatory reaction is related to this new autoimmune pots disease. Of coarse this also triggered a pots flare up, which had been a lot better for the last 4 months if I had known I wouldn't have gotten it .

Actually my BP stayed about the same. I think the reason is because my Bp's usually run high as a compensatory mechanism. If the saline helped this than it would return my Bp to a normal level. Mine was good at discharge- laying it was 109/66

The two times in my life that I have come the closest to fainting, I was sitting down. Actually I was driving on 1-95! Both times were because I had skipped my coffee. They hit me suddenly and intensely. If I had not freaked out and had such an intense adrenaline response I know I would have fainted. Fainting while sitting is definitely possible. I also have way more pre syncope laying down then anything else because my Bp drops so low

Hi, mine is the same the worst time of day for me is between 10 am and 1:00. Evenings, I feel great. The only thing I've come up with is the SNS. It is really ramped up in the mornings and you become more vagal at night.

I'm assuming this is common amongst us. It is amazing though! And clearly speaks to our hypovolemia. I'm hooked up to an IV right now and my hr went from 76 pre IV to 52. 52! I haven't had a pulse that low in 3 years. Downside- my heart is prone to PVC's which are made worse by a slow rate. I've been having tons, but I'll take it!

So I got a new tattoo yesterday. The first one since I've been sick with pots. About 2 hours after I started feeling like I had the flu and began shaking real bad. Today this continued and got worse. Interestingly, no fever. In fact I have had the opposite problem. My temp has been so low- like hovering around 96.8 and ive been shivering all day. Given the fact this happened only 2 hours after I've ruled out infection. It's got to be some hyper inflammatory response. I have never had something like this before pots. Makes me wonder if my pots is related to my immune system after all. It's like a crazy cytokines flat up or something. The tatto is also major enflammed even going up my arm (it's on my wrist). So here I sit in the ER hooked up to an IV. I wasn't going to come in but since I have mast cell issues I was worried about this being a hypersensitivity reaction or something

Pregnancy. Not one symptom my entire life until one day when I was 32 weeks pregnant and could no longer stand up.

What are you afraid of seeing?

My sound sensitivity is so bad I constantly cover my left ear. I have no idea why only my left, but it makes me a lot less dizzy I have noticed. It is some sort of compensatory mechanism because most of the time I don't even realize I'm doing it. It makes me sad because I feel like such a weirdo!

Have you ever been tested for Marfan's? I know there are heart conditions that go along with that.

I also get that. Mine is a feeling of over whelming dread, sadness, and fear. I think it is from me starting to faint in my sleep. My BP gets very low when I sleep

Take frequent breaks to get up and walk around. This can actually be surprisingly hard. I get so tired at work the last thing I want is to stand up but the longer I sit, the worse I feel.

My docs feel pretty certain I've got a mast cell situation effecting my pots because I have a very high 24 hour urine histamine. He prescribed me Clarinex and Pepcid. He also wants me to take Ketotifen. Has anyone also taken these drugs or others? Does it improve your pots? Thanks!

Its the Baro receptors in your heart and neck. When they are stretched from increased pressure (such as from increased blood flow when bending forward) they fire rapidly which raises BP and drops heart rate. When you stand back up they release so your Bp drops and hr picks up. You likely also feel light headed once you stand up straight after ( it is from the compensatory Bp drop). This actually happens to everyone when they bend over but the reaction is more intense in pots because those receptors seem to be over sensitive.