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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 denervation may be the cause of increased resting flow and reduced mesenteric resistance in these patients. http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm
  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 results seem to mimic the CAN results. I heard this morning from a Doctor's webcast that if your BP doesn't rise by 10 points both systolic and diastolic when going from sitting to standing, there's an autonomic problem. My BP didn't change at all. I did it 2-3 times. Only once I got a 5 point change in both sys & diastolic, but the other 2 times, no change at all. even after 3 minutes standing. this could be the beta blockers.
  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 interpretations? I'll try again in the AM before I take my meds. I'll try for 2 readings in each posture. http://www.sciencedirect.com/science/article/pii/S1262363611001649 from the graph it looks like for healthy and non-CAN people, BP is stable (115 systolic) during stand, then the BP increase (150 systolic) on squatting is transient - less than 20 seconds and then it returns to pre-squat BP. On squat to stand transition, BP drops (to 70 systolic) for less than 30 seconds and returns to pre-stand BP. For CAN people, the BP increase on squat stays up for the full squat duration and continues to rise a bit (150-155), and then stays low for the full squat-stand transition, and even drops a bit more (85-75). HR seems to stay more stable for CAN people, staying at 85bpm during stand, then dropping to 75 bpm during the full squat and jumping back to 85 bpm and staying there during squat-stand transition) but for healthy people, it drops significantly for 10-20 seconds at the start of the squat (to 55bpm), returning to slightly less than normal in 30 seconds (75-85bpm), then goes up to about 120BPM for about 20 seconds on the squat-stand transition, returning to normal (90 bpm) within 30 seconds. It seems the change in HR trigger the baroreflex in healthy people and CAN people don't get that and therefore we don't get the benefit of efficient BP stabilizers. So what kind of doctor treats CAN? My neurologist wouldn't do the squat test. He said cardiologist. And can chiropractic help CAN? I mean, I had a car accident 15 years ago with spinal injuries and chronic neck & neck problems since. But my POTS started after a flu during pregnancy. So I dunno if spinal/nerve damage is causing this or autoimmune or what.
  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 damaged nerves, healing neuropathy and also reducing neuralgia symptoms. most studies are related to diabetic peripheral neuropathy, but PN has many causes - spinal injury being one of them. Peripheral nervous system includes sensory, motor and autonomic nerves that run outside the brain and spinal column (but originate in the spine) including organs and limbs. Nerves that do not exit the spinal column or brain is the central nervous system. My doc has not officially dx'd PN yet, but suspects it. I have more tests in 2 weeks. They're going to do muscle/nerve testing and an eye tracking test. The squatting test is a good one for me too b/c I get really symptomatic doing that, and it indicates CAN. "1.) Short-term treatment for 3 weeks using 600 mg of thioctic acid (Alpha Lipoic Acid) i.v. per day appears to reduce the chief symptoms of diabetic polyneuropathy. A 3-week pilot study of 1800 mg per day given orally indicates that the therapeutic effect may be independent of the route of administration, but this needs to be confirmed in a larger sample size. 2.) The effect on symptoms is accompanied by an improvement of neuropathic deficits. 3.) Oral treatment for 4-7 months tends to reduce neuropathic deficits and improves cardiac autonomic neuropathy. 4.) Preliminary data over 2 years indicate possible long-term improvement in motor and sensory nerve conduction in the lower limbs. 5.) Clinical and postmarketing surveillance studies have revealed a highly favourable safety profile of the drug. Based on these findings, a pivotal long-term multicenter trial of oral treatment with thioctic acid (NATHAN I Study) is being conducted in North America and Europe aimed at slowing the progression of diabetic polyneuropathy using a clinically meaningful and reliable primary outcome measure that combines clinical and neurophysiological assessment." http://www.ncbi.nlm.nih.gov/pubmed/10595592
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