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Everything posted by joyagh

  1. I got symptoms of a UTI 2 days after starting Florinef. The doc found nitrates and leukocytes in my urine and gave me antibiotics. But I'm on day 5 of antibiotics and am still having symptoms. I stopped the Florinef yesterday thinking it's causing the frequent/constant urgency to pee. Does Florinef cause this and how long after I stop it will these symptoms continue?
  2. found it. this makes sense. my distention is hard and looks like an 38 week pregnancy. When I'm not distended, I only have about 1/2 inch of fat/flab on top of my muscle. It actually hurts to suck it in or lie on my belly, but I have no internal pain or digestive symptoms. I think all my organs pool and swell with any intake of any amount of fluid or food. splanch·nic /ˈsplaNGknik/ Adjective Of or relating to the viscera or internal organs, esp. those of the abdomen. Synonyms visceral - intestinal
  3. do you mean splanchnic pooling? is that actually in the spleen? I have a 10 inch increase in my abdomen during each day. it goes back down by morning. I have this I assume but no doctor has ever done an abdominal xray or anything on me. Splanchnic pooling is occurring after meals in some POTS patients. Excessive pooling of blood in the abdomen has been shown to occur while the patient is supine and at rest (Tani, Singer, McPhee, Opfer-Gehrking, Haruma, Kajiyama & Low, 2000). The splanchnic vascular bed contains up to 30% of blood volume. Limited autonomic neuropathy causing peripheral dene
  4. Metoprolol and Klonopin! I take Klonopin every night to prevent that. Kava Kava helps too. weirdly, all my urine and plasma adrenaline tests come back normal. (of course I'm taking beta blockers)
  5. what are the side effects? I dunno, an IV once a month to feel normal is better than a bunch of meds everyday to still feel like crap, IMO
  6. does anyone know the name of it? I have pregnancy & viral onset POTS. It's gotta be autoimmune. I want IVIG and I want to tell my dr what to test me for. Thanks in advance.
  7. So have you had IVIG? How often do you have to have it done? How well does it work?
  8. This is so helpful to me. I got POTS at 4 mos pg after a flu. I became hypertensive around 6 months and developed Pre E by the last week. I also swelled up suddenly one night and it didn't go away til 2 weeks post partum. what does one do about an auto-immune caused POTS?
  9. thank you for this. this answers a lot of my questions. autonomic neuropathy and its symptoms seems to be the key for me. which is scary.
  10. this isn't about POTS. all it says is POTS is end-stage dysautonomia, which it isn't.
  11. I was taking Beta Blockers when they drew my blood for the plasma norepi test (supine and standing). Does this affect results? If I'm not hyper POTS, why do Beta blockers help me more than anything, and without them I'm a mess?
  12. I did the squat/stand test again this AM. took 2 readings in each position about 1-2 minutes apart. I graphed them and they look like the CAN patient's graphs, although less marked - more gentle appearing on the graph. I didn't have any of the spikes or drops that the healthy groups had. I had a stable, even 10 point rise in systolic BP from stand to squat, and a 10 point stable drop on squat/stand transition. My HR started around 68-70, dropped to 58-60 during the squat, and back to 67-70 during squat/stand transition. Of course, by beta blockers are still affecting me this morning, but my re
  13. apparently he's got 50 treatment centers for neuropathy, including autonomic neuropathy. He's got one in my town, so I might try it. http://www.beatingneuropathy.com/about-dr-john-hayes-jr
  14. a POTS DX is certainly not benign, depending on cause. If cardiac autonomic neuropathy is the cause, you can die from a sudden cardiac event. I'm sure other causes are not benign either.
  15. many questions: If I do my own squat/stand test (the best new test for CAN - better than tilt table), what do I look for in HR & BP? I'm using a wrist BP/pulse monitor. The test is done 1 minutes standing, one minute squatting, and 1 minutes standing again, checking HR & BP throughout. With my wrist monitor, I can only check once, maybe twice, during each posture. Here's the study about the test and the graph. I did it tonight but was on beta blockers and a Klonopin. I got 106/65, 71 BPM during standing; 120/71, 71 BPM squatting, and 106/71, 78 BPM on squat to stand transition. any int
  16. ok. makes sense. I think with standing still for 10 minutes, having all the blood drop out of my chest, moving my arms around so much with lathering, and overhead with shampoo just kills me. I get tachy and breathless and exhausted. feel like I ran a marathon. Have to rest for at least 10-20 minutes or I'm wrecked all day. glad to know I'm not alone.
  17. along the lines of anti-cellulite creams - essential oils help a lot with circulation. I mix cedar, orange, lavender & lime into a massage lotion or oil and apply it all over. you can increase the dosage by adding extra drops of oils and use it in areas you feel pooling. most essential oils help with circulation. Especially cinnamon, rosemary, peppermint, etc.
  18. this happens to me too. usually I nap with my 3 yo and that's how I survive, but when she doesn't nap, I'm done for.
  19. anyone get exhausted, overheated and nauseus after showering and need to sit and rest for a few minutes? Also, if I get up too early, I have allergy symptoms - sneezing, sniffling etc. Are these POTS related
  20. I am also currently being tested for peripheral neuropathy. My symptoms are the same all the time esp if I don't take beta blockers. I had a virus during pregnancy and my symptoms started right after. I also had a bad car accident with spinal injuries 13 years prior to the pregnancy & virus. My sy are tachy & dypsnea.
  21. I'm not familiar with the EMG or QSART. The valsalva test I had was not a pure test I don't think. they had me blow through a tube that was open on the other end to see how long and with what pressure I could blow. It was more of a pulmonary test IMO. I had that same thing done with my Pulmonary testing. I thought Valsalva had to have a closed end, so you react to the pressure. I know if I hold my breath (hiccups) I get immediately dizzy and tachy and dypsnea. I will update after my new tests are done.
  22. the tests I'm going to have are VNG, EMG and NCV. I don't know what those stand for.
  23. With neuropathy there is a lot of pain. Alpha Lipoic is supposed to help heal the nerves themselves. With spinal injuries - there are also injuries to the nerves. I don't think there are any studies showing that it will help with injuries like that ---but, who knows. For me, I think a lot of my back pains are AS related and therefore autoimmune --that's where the LDN comes in and it is also supposed to help with healing of the nerves.Issie nerve pain is called neuralgia. neuropathy is nerve damage causing lack of function, with or without pain. Alpha Lipoic Acid has been found to help regrow d
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