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Aeris5000

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  1. Good luck, Raisin! I just saw my neuro at CCF this week and he is referring me for a lip biopsy. I was unable to get the test scheduled while I was there, but I have the phone number for Dermatology to schedule it. It makes me feel better to know you are also going to Derm to get yours done. The doctor must be good if that's all he does! But you're right about the timing, my neuro said they're scheduling into Dec. and January next year. I'm a bit more worried about the healing process than the procedure. I had skin biopsies done on my leg over a year ago and the raised bumps that forme
  2. This is interesting because my EP did tell me that my POTS may go away once I hit menopause. Even it if that's true, that's at least 10-15 years away. I don't know if I believe him, but since POTS seems to react so strongly to hormonal changes, I can see symptoms getting better, maybe. I've had POTS for 2 years now, and I had one day of almost 100% normalcy back in April - it was the day before my period started. But I do think it depends on what caused the POTS to begin with. Mine seemed to start during a period of prolonged stress and anxiety, though I do think I have IBS and have bord
  3. Yes, I saw him in June - he is an allergy specialist, but he may handle other immunological issues, too. I thought he was very pleasant and thorough. I saw him after a freak allergic reaction to either aspirin or old nasal saline this past March. I didn't see him got POTS specifically. He was pretty straight-forward and ordered me an aspirin tolerance test which I was able to do the same day. He also had me do a spirometry breathing test beforehand since I have mild, allergic asthma. I asked him about testing for food allergies, but I couldn't test that the same day with the aspirin chal
  4. I've had the same results, the low potassium and low CO2. I see Dr. Wilson at CCF Neuro and he noted in my labs to not worry about the low CO2. My potassium is usually 3.3, but it has been as high as 4.0 on occasion. I am not a milk drinker, which my MIL (a nurse) tells me is important. I eat a banana everyday and try to drink OJ at least twice a week.
  5. Corina, I'm kind of the opposite! I can go on a 20 min. walk during lunch hour and feel awful afterwards, even though my HR goes no more 115 bpm on these walks. But I can ride my semi-recumbent bike for 50 min. with a HR around 135 and feel okay afterwards (not great, just okay). I can't run either. Even hustling across the street gets me out of breath, and a set of ten steps will get my HR up to 170. I would love to do dance aerobics again, but I don't know.
  6. I have noticed I feel better at that same time of day, between 4:30 to 11:00 or so. I feel fine in the morning somehow, I can get out of bed with no problem. I could even drive to work with little problem. But around lunchtime, 12:30 to 1:00 is when I shut down. Today was a bad day at work, I was stuck my desk from 1:00 - 4:00. I managed to get up to go to the printer twice and I had to rush back to my chair pretty quickly. I didn't eat lunch til 4:15. It's so strange, it's like clockwork. I had one really good day about a week or two ago where I felt the most normal I've felt in two y
  7. Good luck with you appt, Bigskyfam!! Glad you will have your hubby there to have your back. In my experience with POTS, all the specialists I've seen went right for the POTS diagnosis. All the internists I've seen all suggested anxiety. I don't know who to trust, really, so I'll have to trust myself. I know I have anxiety for sure, about real-life stresses. My mother is agoraphobic and has panic attacks in certain public places. I like to tell myself I just have anxiety, but my TTT was positive for POTS last year. So I probably have both, which feed off each other. My neuro thinks I h
  8. I actually work in the HVI dept at CC and have become a patient since all this POTS nonsense started. I definitely recommend a neurologist, mine is Dr. Wilson, who is extremely nice and did everything he could to get to the bottom of my symptoms. He has so many POTS patients that he has started doing group appts, which sounds interesting. I hear Dr. Shields is very good as well. If you do want to see an EP, Dr. Jaeger is the POTS go-to man. I've seen another EP who is very nice, but gave me his blessing to see Dr. Jaeger instead, because he doesn't know as much about POTS. Dr Fouad was an ex
  9. What disturbs me most is my constant "edginess" or anxiety. I feel this way ALL the time, it really never goes away. It's worse when I'm sitting up at the computer, like right now. I honestly don't know if I have POTS or panic/anxiety disorder. I guess it's possible I have both, but my HR has really been good lately. I have my worst symptoms when my HR is normal. And I've been more physical, climbing staircases at work again, with no bad physical reactions - just the darn anxiety.
  10. I experience the same thing, dkd. My husband snoring someone gets me, but other loud noises don't faze me at all. Driving to work is nearly impossible because it involves the highway during rush hour. Even when I'm in the passenger seat, I imagine every car we pass will change lanes and side-swipe us. But I know anxiety is a big factor here, because I'm much worse when my hubby drives, because he is always lane-jockeying and speeds. My driving anxiety (and my POTS, really) started when he quit his job 1.5 yrs ago and instead of driving to work together, I was suddenly doing the scary driv
  11. Northerndarlene, I had a few similar episodes to yours very early on in my POTS, well over a year ago. To me, it sounds like a panic attack or an adrenaline rush that happened in the middle of the night. I had several of these and they were quite frightening. I had to sleep with a nightlight on for a few days. But my symptoms were similar: had to completely void in the bathroom, and saw spots/visual snow as you described. I also remember shaking and feeling very unsteady standing up. I tend to get hives on occasion that come with increased anxiety, not POTS-related, so I understand the
  12. Thank you, everyone, for the very insightful info. I wish I had seen this thread a year ago, as my worst POTS symptom is daily headaches. I also work a desk job where I sit pretty much all day, and even though I feel strange head sensations every waking moment, I start getting worse around lunch hour, 3-4 hours after I've been working. I work with two PC monitors and staring at the tiny font for that long makes me feel worse. But if I get up and walk around just a little bit, the blood seems to work it's way to my brain a little better. I have a question for anyone who gets these "lack of
  13. Sorry you'e been dealing with this, srb! I went through the same process as you. I started with a neurologist first, because my worst symptom was daily, persistent headaches. Anxiety/panic rushes was my second worst symptom, and usually stemmed from the headaches. My road to diagnosis was long, about nine months. My EP doc said he found it almost impossible to get a TTT approved for hospital employees with company insurance, which I happen to be. So he went the non-pharmacologic route with me, too, as he does not like to medicate unless it's really necessary. My neuro doc was way more p
  14. Clash, I saw my EP yesterday, too, and I pretty much bombarded him with similar questions. You and I seem to have a similar POTS presentation, as my EP told me that after lookiing at my tilt table results again, I have the "classic" presentation, which I believe means it is very common. I'll try to see how I can help compared to what I asked my doctor: 1. He didn't say what a good resting HR is, but my EKG came back with 90 bpm which he said was a little high. But I told him I was nervous going in. IMO, between 60-80 bpm is probably preferred. 2. I didn't ask him this particular question
  15. I work as a cardiology coder in one of the top POTS hospitals, and even with my company insurance, it took nine months to get my TTT approved. The problem was my cardiologist was using 785.0 for tachycardia, which will not work on a claim. He told me that he had never been successful in getting any employee a TTT. My neurologist, on the other hand, did get the TTT approved by my insurance, he used 337.9 which is for unspecified autonomic dysfunction. When I next saw my cardiologist, he asked how the heck I managed to get the test approved and I told him. He was pretty dumbfounded, haha.
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