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joiedevivre

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About joiedevivre

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  1. Has anyone used an inversion table to practice standing? I mean in the head up feet down position so not inverted. It seems like for me it would get me some standing time without the extreme fatigue of engaging my muscles to keep upright when really standing. I believe the lack of gravity is the biggest contributor to my illness and I’m always trying to think every day trying to get more standing and sitting time but I can’t increase it at all. So I want to try an inversion table a little a day. What do you think?
  2. For those of you with MCAS who have tried Ketotifen did you get any side effects? I’m still waiting for my meds in the mail but it looks like Ketotifens side effects are exactly what would be intolerable to someone with POTS. If you did get them did they go away after a while? Thank you.
  3. I only have a POTS diagnosis, no DI, but I've suspected I have it since I heard of it. I feel like 0.2 mg makes me pee like a normal person ( I still pee some on it), and if I took more that would be the POTS treatment part. I guess I should try to see an endo soon, I have to anyway.
  4. Let me know how it goes and what dose you're on. I hope it helps!
  5. I take .2 mg twice a day. It definitely helps a little but I feel a higher dose might help more. If you take it what's your dose?
  6. If yes or no, what were the circumstances? I only have one pots Doc in my state with an 11 month wait list. I'm trying to see DrGrubb and I finally am at the top of his waitlist, but I can only go if insurance covers it. As a general question to you all, whether you have Medicaid or another insurance, does your insurance cover your appointments when you go out of state or you're all paying out of pocket? Thanks!
  7. That was a lot of interesting info on erythropoietin, and medication s in general, thank you! One study (by Grubb) even said 80% of study subjects had a great response to it.
  8. And if you have, what were the results? I'm wondering because I see it mentioned as a treatment on several POTS websilike this one https://myheart.net/pots-syndrome/treatments/ , but I don't know if I ever heard of anyone trying it? I know it's used illegally by athletes, but it doesn't seem inherently more dangerous than other medically administered treatments. Thank you
  9. My gp is so nice and wonderful and agreed to let me try IV saline the first time I asked! I've not seen him to get the script yet. Do you have any advice? I don't know much about IV saline for pots and neither does he. I think I've read someone say that that tried one liter and got no help, but after trying 1.5 they did? Should I ask for 1.5? I also heard the time span matters? How much time per liter? Also, is all the research on this by dr grubb? What time/amount do they use in research? Thanks!
  10. I didn't measure my bp. But I don't believe my bp is a measure of my symptoms anyway. In other words, I don't believe it's a perfect measure of how much blood is pooling/how much blood my upper body is getting. Maybe it is in some sense. For example, my standing bp might range from 75-95. Within that range it seems to indicate nothing. Maybe I would feel good if my standing bp was 120, but it's never been anywhere near that. And I can feel universes different and have the same bp. I can feel like death with a bp of 90 one day, and another not feel like killing myself with a bp of 90. The only thing that makes a difference to me is sleep, exertion, and my period.
  11. Yes, you could have POTS if your hr jumped less than 30 beats just testing at home or at the doctor's office. Mine would jump only 20-30 beats at home but when I went to get my tilt table test and they gave me nitroglycerin it went from less than a hundred to 160 beats a minute. I also never faint but my symptoms are very severe and I'm home bound at least half the time. Though I will say that by the time it got really bad it was obvious to me that I had extreme problems standing ( before I knew of POTS), but earlier on when my symptoms were just starting 9 or 10 years ago, it just felt like "fatigue ". I didn't link it to standing though I should have. I thought I was tired when I was standing because standing takes energy. Then I would tell doctors how I was exhausted and couldn't do anything and they just ignored me and sent me away.
  12. Ok, that makes sense if you don't just pee it out immediately ( as I seem to with water). But what if you have Ehlers Danlos? Wouldn't the veins in your lower body just stretch more to accommodate the extra fluid and none reach your upper body? I'm very worried about stretching my veins. Also, I agree that it seems unlikely that trying it once or twice would cause any harm but I hear most people's doctor's won't even consider it? I know there are risks with a port or frequent transfusion but I'm only hoping for one or two chances just to see! I really hope my doctor will at least consider it. I hear so many people say it helps. Are you prescribed by a "pots doc" or a regular cardiologist?
  13. I, like many, drink lots of water and salt, and yet it helps nothing at all, and I hope of trying IV saline. I mentioned it to my definitely temporary cardiologist and he basically thought it was a funny and ridiculous suggestion and told me that's for people who have diarrhea or nausea and are admitted to er for diarrhea or nausea. So I'm wondering if there's an argument other than that many POTS patients are helped by it and that's a fact? I read that some people with POTS have digestive issues which prevent drinking huge amounts of water. Is IV saline only for those people? I not only get NO help from drinking 3 liters and over 5 gr of salt a day versus drinking a normal amount, but doctors seem not to care that it takes SO much energy to drink water. Many days I feel exhausted from drinking half a 12 oz cup of water let alone the energy over the whole day. I also pee at least every half hour when I drink this much and since there is a limited amount I can stand in a day it's exhausting to pee. I don't have money to try a hydration bar to argue from experience. This illness has already cost me over a hundred thousand dollars if debt and continuous added debt for every day I'm still alive. I also have never been given IV saline in an emergency room, but I'm confused how others have? I thought if your not vomiting or have days of diarrhea then they just look at your pee to determine if you're dehydrated and my pee is always clear ( at least this is what they did to the guy in the bed near me, they just looked at the color of his pee). So I'm wondering what my argument for my regular doc ( who seems to be treating my pots anyway) as to why trying IV saline would be worth trying if he says it's no different than drinking water? I'm confused about this myself? And I only want to try it once . I'm not asking for a port or anything. Just knowing there IS something out there that helps me would make this h*** easier to bare, rather just a bunch of hypotheticals which might help me. Thanks!
  14. Thanks! That's so kind of you to find that link for me! Yeah, I'll have a Carecard once I move there, but I was hoping to try IV saline on an upcoming visit. I seem to have not responded to any drugs. There's still northera to try but it's taking a while to get it.
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