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I get this right as I'm falling asleep, like that feeling where you're falling right as you drift off (hypnic jerk I guess?) but instead it's a jolt of Adrenaline and I wake up with a high heart rate, breathing hard and convinced I'm dying. Then I can't relax enough to fall asleep because it often repeats itself after the first one and I get insomnia. They did test me for sleep apnea about 3 years ago and my sleep study came back normal. It was an at home sleep study where I was wired up to a machine that recorded my breathing and heart rate. I'm not sure I had an "episode" the night I was tested though. I also never sleep on my back, mostly on my side or stomach and they still happen. It often happens when I'm super exhausted already. On nights I'm not as tired it doesn't seem to happen. I have good sleep hygiene outside of the cycle I can get in when these episodes give me insomnia. I'd be interested to figure out how to stop these, it's my worst POTS symptom to date.

I often feel not quite awake, or like things aren't quite real. I usually say I feel out of body. It used to freak me out and now I know it's a symptom and go about my day. It's usually worse when I first wake up, am very tired, or sick. Sometimes I use a panic attack calming technique to try to feel like I'm back in my body. There's a couple different variations but I think of two things I can see, two things I can smell, taste, hear, and feel. It helps a little bit sometimes.

I had a similar experience with propranolol, though I was on it for about 4 years before it started to lose it's effectiveness. I've tried Florinef and Atenelol, but experienced bad side effects that didn't seem worth it. So I'm off of meds for now, which isn't really working out either lol. I just got really sick of trying pill after pill and suffering the side effects. I hope you find something that works for you!

Thanks Chaos! Never heard of Dr Kaufman, but there's some interesting/good stuff about his treatment methods on Phoenix Rising. Dizzygirls, thanks! That's good to know

I don't have many issues, but compression tights or socks help. Especially if the flight is over a couple of hours. I've heard that you shouldn't eat on planes (in general) because the pressure makes your stomach slow your digestion and that's often why people get jet lag. I don't know if that's true or not but I try not to eat on planes (just drink fluids).

Thanks DizzyGirls. I might try to switch to Irina if I can. I've been having negative experiences at Stanford. I heard a rumor there might be a specialist at UCSF, but not sure. I do think it's super odd that there aren't more doctors familiar with it out here. I don't have Ehlers Danlos, but I'm glad your daughter found someone at Stanford that was good for that!

Hey there. I'm not feeling very heard/cared for with my current specialist (or general doc really). Does anyone have any recommendations for good doctors that know how to deal with POTS in the Bay Area or Northern CA? I've tried two specialists at Stanford (Dr. Friday and Dr. Miglis) without much success, and currently see regular doctors in the One Medical Group. Open to a non-specialist who knows their stuff.

I use banana bag after drinking alcohol (probably shouldn't do that) and hot days or after losing electrolytes. I haven't tried using it daily as it seems a bit too expensive for that. I also like DripDrop.

I've gained weight over the past couple years. I couldn't keep up my activity level. I have a ton of bloating after eating so that doesn't help. It definitely seems much harder to lose the weight.

I felt better within a couple months of diagnosis and felt like I was at 80-90% for about 3 years and then things started to go down hill steadily since then. My current specialist says there are usually up and down cycles for POTS patients. My first specialist at Mayo Clinic, Dr Goodman said that POTS usually goes away in a person's 40s, which another MD with POTS knowledge just repeated to me recently. I don't really believe that is the case for all people though. Seems like plenty of people are diagnosed with it after 40 or continue to have it through their 40s.

They had me fast for 12 hours before the test and then cooked me some radioactive eggs and toast (weirdest test I've ever had lol). I'm not sure what you mean by Sprue but if you mean Celiac I was tested like 10 years ago and was negative. Another weird thing is I seem to be gaining a bit of weight steadily over the past couple months and don't feel like I've been eating much more/unhealthily. And thanks! I just don't really know what to do since my medical team seems uninterested in figuring it out. I feels like if I could just eat the right things it would all go away, but it doesn't seem consistent as to what upsets my stomach or doesn't.

Hi everyone, I'm still a newbie here, only posted once, but I feel like I get a lot from reading other's posts. I've had POTs since 2011 and have had ups and downs. Right now I'm in a bit of a downturn and I'm feeling kind of hopeless. I'm having a lot of GI issues and I feel like my doctors ran the obvious POTS related tests (SIBO breath test, Food emptying/gastroparisis test) both came back normal. They don't seem to have any more ideas. My stomach issues are causing huge flair ups in my POTS symptoms and my anxiety. I've tried low FODMAP diet (though admittedly not long enough possibly) with no improvement. I haven't done gluten free, but my specialist thinks it won't help me at all. I eat a mostly healthy vegetarian diet normally. I've been diagnosed with IBS several times, but feel like there's got to be something else going on here. I'm constantly bloated, nauseous, having intestinal pain or gurgling/activity, inconsistent stools, dizzy, acid reflux, etc. Does anyone else have similar issues and been cleared for SIBO/gastropariasis? I feel like it can't just be IBS.

Hi everyone, I'm new here. I've had POTS for about 6 years now. I was diagnosed at Mayo AZ and put on the propranolol and midrodrine, salt routine. Over the past few years I've gotten mostly better. I cut out the midodrine a couple years ago which aways made me feel a little weird. Two months ago I tried to go off my beta blockers. I was off for about 2 months and felt some POTS symptoms but nothing too bad. Then one day at work I had some kind of adrenaline rush (doctor thinks it was a vasovagal response from using the restroom). My heart rate was near 200, was shaking all over, and had extremely tingly hands. It was pretty embarrassing cause it felt different than a normal POTS episode and I was scared so my coworkers called an ambulance. Since then I feel like I've been knocked back to how bad things were when I got diagnosed. My specialist (at Stanford) put me back on a new beta blocker which made me have bad side affects, back to propranolol and then after some discussion off of those and onto Florinef for the first time. About a week after taking the Florinef I had another adrenaline rush (doctor thought the Florinef would handle vasovagal responses which he think are responsible for the adrenaline surges). I lasted another week on the florinef with nothing but bad side affects and the doctor has said I can go off of meds for awhile and see what happens. I'm wondering if any of you have experienced similar episodes. My theory is that my body is adjusting to not having the beta blockers in my system and doesn't know how to handle adrenaline anymore. I'm hoping going off of meds helps my body level out a bit and then I can make better decisions about what meds I do or do not need (there was so much pill swapping I didn't know what was a side affect and what was the POTS).