KellyA

Yes. It's pretty good now, on meds. But definitely higher bp and hr from supine to standing. Was much more dramatic before, which I kept logs of. That's why he did the ttt on me, but evidently all that history and symptoms don't count if the ttt is normal that particular day. I think I needed to be off certain meds longer than I was.

Madelines, I wish I had your Dr! I passed my ttt, but not the breathing one. The decision so far is no POTS. But my norepinephrine is sky high supine, and higher standing. My neurologist has discounted that, saying it doesn't matter the value, the fact that it doubled is normal. I think he's wrong for hyperpots. You'd only see a huge increase with a pheo. My Dr thinks I might have MCAS. Someone recommended a good Dr for that, I'll look. It's not in Florida though, but could maybe give a referral?

mehganb81, do you see the same Dr as Kalamazoo? How often are you guys going for follow-up appointments? I'm wondering if I got dumped by my neurologist in Kirkland. It's been radio silence for 2 months. The receptionist/MA says he's still got my file, but I'm not sure I can deal without any communication. Did you find a neurologist as well, since you're seeing a cardiologist at UW? What did he end up going by, since you said your symptoms weren't straightforward for POTS?

I was thinking about you and wondered if you'd heard back from your UW docs yet. I'm still waiting to hear back from mine. At this point, I'm not impressed with his communication skills Supposedly, he's looking into vagus nerve symptoms and how it might tie in to my AI disease. But maybe he just blew me off and I need a new neurologist. Guess I'll have to chase him down and get some answers. Hope you're doing ok. Are you still having a heat wave over there? I can't wait for cooler temps, I feel so much better in fall!

Just curious what the IV was for? My TTT didn't have one. I'm still waiting for final results.

Vtpixie, I'm in the exact situation. I'm a med tech. And we're chronically understaffed. I don't think we've kept someone longer than about a year for 3+ years. It's like a feeder program; New grads for a year, train them up to speed, then off they go to somewhere that pays more for less work. I'm thinking of leaving too, but because of my health would have to go per-diem, so no guaranteed hours. Right now, I'm 2 days a week and grandfathered in to get sick and vacation days. Pretty good deal. My boss has been really great, for me I worm swing better so I can nap in the morning after getting my kids to school. But I finally had to get a note limiting my hours because they were so desperately understaffed, they kept working me almost full time. So wish I had a job at home, but don't know how to make that happen. No lab at home! I tried medical transcription, but my daughter was diagnosed with diabetes, at 2, during my first couple weeks. Now I can't type or sit that long. Our ac is not keeping up at work, and they're "working on a plan." It'll be Christmas before they actually do any work. I also have a note saying I can't work if it's over 78°, but not sure how I pull that off if it hits that mid-shift? The poor other tech has the hotter area, and will probably keel over if she had to do my job too. Their answer is more fans. Not a great solution with Sjogrens, and we all feel like we're going to blow away. Nothing better than a nice hot gale force wind

Thanks!

Do any of you have issues with fevers? I have a constant, low-grade fever up to 100.8 We're trying to figure out if it's autonomic, or a symptom of my autoimmune diseases not being under control. I've had it for 4 years, nothing has any impact on it: anti-inflammatories, immunosuppressants, etc. The only thing I've noticed is that it will drop to around 98.8-99.2 if I lay down for awhile. Then it bumps right back after I get up again. I do have hot/cold intolerance, but doesn't seem to have any correlation to my fever. The other weird thing is even with a fever of over 100, my skin will be ice cold. I'm still waiting for confirmation of a dx from my Neuro, but I'm pretty sure I have hyperpots, and maybe MCAD. I do have peripheral neuropathy (AI, not diabetic), lupus, and relapsing polychondritis. Any ideas?

Thanks for letting me know I'm not alone. He said the NE test and the other catecholamines was to rule that out. From him and my reading, I don't have it because everything else was negative, and I think with pheo the NE are more like quadruple on standing or more.

I have one of those fans. My daughter has cyclic vomiting syndrome and is very heat intolerant. She has a misting fan she likes. I also carry a frozen water bottle to work and running errands. I'm cold and heat intolerant. My worst thing is probably the middle of a hot summer and going to the mall so my body has to ping-pong between every store's different ac temps, plus the hot and cold between the car and outside. The refrigerated aisles at the grocery store do the same thing. After a certain number of temp changes, my body can't handle it anymore, and I get horrible symptoms.

I have lupus and relapsing polychondritis, Sjogrens, raynauds, large fiber neuropathy, and some stuff we're still trying to figure out. AI stuff is managed, but not controlled, with flares about every 6 months. From reading articles and talking to others, I think I have hyperpots and likely MCAS. I'm on bystolic for my BP and HR, which is working pretty well. I was on a Ca channel blocker for over a year with my first cardiologist. It didn't do a thing, and he refused to change it. Said we needed to address the AI stuff, and he didn't mess with that. Love my new cardio! Anyway, I've had high BP when standing for about a year and a half, since my worst flare. Always high HR, that rises >30 on standing. Was about 135/90-85 supine, 160/110-125 standing before meds, now about 120/70-70 supine and 135/85-90 standing. I also have night sweats, chills/cold sweats, cold/clammy hands and feet, pooling on standing (legs get darker), tremors in my hands, flushing, GI issues (especially after eating), and probably some others I'm forgetting. Docs like to blame everything on my weight and meds, especially prednisone. Though shrug when I tell them I have had the same symptoms with a 40 pound range, on/off and higher/lower doses of meds. I had autonomic testing on Friday and I'm not sure what to think. They were all normal, except the valsalva maneuver, which was lower than normal. He said he was surprised because of my logs and symptoms, but now doesn't think I have POTS. My norepinephrine levels were 590 supine and 1150 standing. He said that all he looks at is the percentage it rises; he says doubling on standing is normal. From everything I've read, both my numbers are high enough to strongly suggest hyperPOTS. What is the current, official line on diagnosis? I also had an abnormal swallow study that I'm waiting to hear the final interpretation of from my GI (liquids and pills get hung up in my esophagus, but not chewed foods or pudding, worse with cold liquids. No obvious strictures, and I think higher than the entrance to the stomach where you would think achalasia, maybe 3/4 down the esophagus). He said the valsalva maneuver indicated an issue with the vagus nerve, which might also be the cause of my GI problems. I'm also wondering if, although he said I have essential tremors and a family history (though much older), if maybe it's actually the high NE levels making my hands shake. He put me on propanolol and it didn't do a thing. Anyway, what are your thoughts? I'm in Washington state, and my neurologist is one I found on both this site and Dysautonomia International. I'm just worried about discounting what all my symptoms and logs have pointed to--hyperpots, because of 2 hours of one day. I was off a bunch of my meds, but maybe not long enough? It was freezing in the room, could that have influenced any of the test with my raynauds? Also, what are the differences in accuracy between the TTT, which is at 70°, and truly standing while testing? And how important is it to diagnose hypovolemia? Is there really any treatment? I'm glad I found this group! I've learned a lot from reading your posts!