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Everything posted by jesse1919

  1. Any more info about Phenylephrine? It doesn't seem to be a standard med for POTS/ OI but it seems logical since it's an "alpha 1 agonist" similar to midodrine. Why is it usually only used a a decongestant? There's very little info about using it for vasoconstriction deliberately. I found this: http://www.cortjohnson.org/blog/2015/02/03/standing-clear-drug-stops-orthostatic-intolerance-mecfs-next-steps/ It says: They injected phenylephrine in the study but found that taking it nasally or orally had little effect. So maybe try a higher dose? Vanderbilt is doing a some study on Northera for POTS and initial results showed it does not work well, according to Dr. Raj at the Dysautonomia International conference.
  2. Well, I think a vasocompressor would only make it worse for them. They need something like a lower body negative pressure machine, that creates a vacuum around their legs. But that might make it hard to move around...
  3. I hope this works for you. It's interesting that Dr. Grubb recommended to change form Midodrine to Northera. I'm also considering this since Mido has lost effectiveness over the years. But's hard to change sometimes- better the devil you know... I've only heard some mixed reactions for it in other threads. Sorry I can't help but good luck.
  4. Hi. Welcome. What did your doctor say? Did you get your results without a follow up appointment? That's odd. Usually they want to charge the insurance company for another visit... and help you figure out what to do next, of course. This alpha business is referring to chemical receptors on your arteries, alpha receptors, that respond to norepinephrine (a catecholamine) and cause the muscles surrounding your arteries to contract, which increases blood pressure. Reduced alpha sensitivity means although your norepinephrine response is high (#6), your blood pressure doesn't rise as much as expected. This is typical in POTS. That formula doesn't make sense to me though. Do you know what your BP was? And #3 is a bit surprising if your resting supine HR is only 53. I'm not sure what to tell you about treatments- Midodrine would probably be the logical choice. Did you start with a low dose and give it a week or two? Have you tried compression hose? Jesse
  5. Blood volume test- Unfortunately it's not a common test. As far as I know the Daxor machine is the only thing that specifically tests this. I was told when I had mine done that there are other older methods, but not as accurate. I think it cost about $2k before insurance. Maybe it's come down in the last few years. Check locations: http://www.daxor.com/bva-100/facility-locator/ I can't believe there isn't one in Chicago. Or Milwaukee, Madison, Indy, St. Louis... Looks like Mayo Rochester might be the closest. Or the Cleveland Clinic.
  6. Bellgirl I'm going again. I haven't heard anything about results from last year. Rich yeah you're right. If IVIG is really a cure, great. But it's just frustrating to see the amount of guessing in medicine. It's still expensive no matter who pays. Insurance and governments increase the total cost through profit and administrative costs, but lower the individual burden. Rama- wow yeah lots of possibilities.
  7. I don't really know but I assume it's caused by humidity after the seal is opened. Ask your pharmacist? Maybe keep the bottle in a zip bag with dry rice and/ or keep it in the frig?
  8. So I'm starting to read more about the immune system and autoimmunity but I don't see why IVIG would help for AI. I see why it aids immunity to external pathogens, but that's not the problem. This NEJM article summary from 2012 says: "The author reviews the many proposed mechanisms by which intravenous immune globulin may exert its antiinflammatory and autoimmunity-inhibiting clinical effects. No single mechanism can explain its activity in diseases with diverse pathophysiological pathways." http://www.nejm.org/doi/full/10.1056/NEJMra1009433 - subscription required; I couldn't read it all. Wikipedia offers some hypotheses: http://en.wikipedia.org/wiki/Intravenous_immunoglobulin - method of action. So they don't really know how it helps AI and it's ludicrously expensive. *sigh* Let's try Plan B.
  9. H.P. That sounds just terrible. I've had POTS 10 years. I'm an engineer. Mostly desk job with some travel. At first I was out of work 3 months on SDI and 3 months more part time. It was so hard to go back full time until I started Midodrine. Unfortunately it doesn't help as much anymore. I spend all my energy working. Usually 45+ hours. It's often stressful. Never enough people to meet the schedule they want. I don't do much on the weekend except sleep 12 hours a day and sit in front of the computer. But at least I can keep my career and finances on track. I wish I could a better work/ life balance though.
  10. Dysautonomia isn't just POTS. There are many others issues and I'm sure many that don't even have a "syndrome" name yet unfortunately. I have POTS without GI or pain. It's mainly awful fatigue, exercise and othrostatic intolerance, and minor headaches. I saw you said you ran a 1/2 marathon in your other post. I wish I could still run. But I know that doesn't mean you're totally healthy.
  11. Yes they did, I was there! Very exciting. They had roughly 100-200 people, both "normals" and dysautonomia patients. There were several nurses, Bonnie Black and Dr. Raj were there. I wish I had a picture of the conference room they turned into a clinic... They had about 5 beds set up there to take BP/ HR laying and standing and they did a basic hypermobility screen. 4+ nurses from Oklahoma were drawing blood most of the day Sunday. There was also an online questionnaire everyone had to do after the conference. It will take months to get the results.
  12. Wall Angles! I have this problem too. I'm always in front of a computer hunched over. It's been worse since I got POTS because I hunch over when sitting to compress my stomach, probably to help counteract "splanchnic pooling". Stretching the back muscles where it's sore, massage, heat did not work- I needed strengthening in my back and stretching my chest and stomach. Wall angels helped a lot. I do them sitting at my desk when I feel upper back is sore. You might try doing them sitting on the floor with your back to the wall if putting your hands over your head makes you tachy. www.youtube.com/watch?v=YO87HFVgsGo
  13. I've been taking it for years. I have the typical itchy scalp and some trouble urinating at higher doses. It took about 4-5 days to adjust to the initial dose and at each increase. I felt crumby the first couple days as my body adjusted. I think I started at 2.5 mg x 3. I would try to call the dr. office to ask them to increase it to 2-3 times a day if it's working. If you have a home blood pressure monitor and tell them your results, they might be more willing to call in the change to your pharmacy without you having to go in for another appointment - maybe.
  14. I certainly have had more frequent infections since I got POTS: colds and throat infections. My hypothesis is that POTS is related to a constantly heightened flight or flight response (hyperadrenergic state). Increased sympathetic/ reduced parasympathetic nervous system activation reduces immune system performance.
  15. I found some men's stockings at Ames Walker Hosiery. They had black ones and "brief-hose". The only problem was in the summer I couldn't wear shorts and they were warm. I wore stockings for a year or so but they only helped a little and eventually I just stopped. But they're certainly worth a try. BTW I wore 20-30mm thigh or waist high.
  16. Thanks Kitt interesting conference. Good to see some new hospitals/ universities researching dysautonomia that I haven't seen involved before. I saw Fealy at Mayo. He was good but I left feeling that more research is needed. The clinic certainly gets things done faster than any other experience I've had.
  17. I'm not sure you have excessive vasoconstriction if your diastolic pressure is low. I think that could mean vasodilation. You could have low blood flow in your arms due to blood pooling caused by dilation. If so, then I suppose Midodrine should have helped. Midodrine did make me feel crummy like you described as I increased the dose, but I also could tell I was less lightheaded when I stood and I had more energy. If you want to know if you have low blood volume, you could directly test it. Check out the Daxor system. It cost about $2000 and $600 out of pocket for me. My volume was normal. It might be easier or cheaper just to try Florinef
  18. I played PC video games a lot, especially since I got POTS. Battlefield 2142 for hours. I get sort of anxious and eyes get strained. But that's to be expected. Not like you described. Hope you find a solution. I keep telling myself I should get a new book...
  19. Mine are Sandoz Pharmaceuticals Inc. I noticed they changed a couple times over the years. They always worked. They have drug recalls all the time? I can't remember hearing about one.
  20. I'm an engineer... Dilbert's my hero. http://media.zenfs.com/en_us/News/ucomics.com/dt121116.gif
  21. Some call POTS "tired wired". I feel exhausted all the time and physically jumpy. Like if I get startled, my heart races, get light headed and it takes a lot longer for my body to relax then it did before I got POTS. But it's not mental. In my head I talk to my heart like "dude relax it was just a car horn". Personally I only get adrenaline surges like Chaos said if something triggers them. But if there is something I'm anxious about it makes the fatigue worst. So I need to be in a Zen place and relax as much as possible.
  22. I'll try. Thanks kimbellgirl.
  23. So by the sound of things, a couple of indiscreet neighbors in another apartment building 100+ feet away are having fun entertaining themselves this fine Friday night. *rolleyes* Quite frustrating when you're single and don't see that changing. I suppose I should think "good for them" but sometimes it's just hard to be around happy people when you're not.
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