joiedevivre

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?

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.

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.

Let me know how it goes and what dose you're on. I hope it helps!

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?

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!

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.

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

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!

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.

I'm wondering because when I've tried it, it doesn't do anything.

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.

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?

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!

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.

I'm in Chicago. There's only Barboi in the suburbs of Chicago but I can't see him because he only accepts patients with Medicaid with a referral from one clinic, and I can't see anyone at that clinic because they're not accepting new patients.

@StayAtHomeMom. I don't think that's the case even in theory. There are conditions in which you have high urine sodium or potassium or both due to your body's inability to moderate it ( and hence hold onto too little of it). That's why if you have POTS it's important to rule out such conditions as a cause.

I'm moving to Canada soon to be closer to my parents. I was wondering if anyone there has had IV saline for their POTS? If so, was it hard to get a doctor to prescribe it? Lastly, I know health care is well covered there, but if you paid out of pocket can you tell me how much it cost for one treatment? I will be visiting soon and not have BC medical yet and I wonder how much it would cost out of pocket. Here in the US it's too expensive to consider but medicine there is often a tiny fraction of the price. Thanks for your responses in advance.

I titrated super slowly starting from 0.025 mg up to 0.1 mg . From 0.05 onwards it made me way more tired, I kept with it through the h*** though hoping it was a side effect that would diminish. But both at 0.O75 and 0.1 I couldn't stand for more than a minute and when I wasn't standing I was laying down. I was only on 0.1 for 3 days, I had to admit no way is this ever going to improve me. I was on the medication all together about 6 weeks. Did anyone else experience this with fludrocortisone? I saw "extreme fatigue " listed as a side effect on drugs.com I believe, but most people seem to stop it for other reasons? I'm wondering if I combine it with another steroid maybe I'd be less tired. Like if I have a cortisol deficiency maybe fludrocortisone made me feel worse because of an imbalance or something?

Yeah, that's what I'm worried about! Getting them on and wearing them! I wish I had asked for 20-30 now, but I heard so many times for POTS you want 30-40. When I told the woman on the phone at the medical supply store 30-40 she seemed surprised and I regretted it then. I don't pick them up until Friday or Monday so we'll see.

I got a prescription for knee highs, technically. I asked for a prescription for 30-40 mmhg. Was that a bad idea if I've never worn compression before? I'm worried I won't be able to tolerate it. Also, my insurance covers Truform brand so I'd appreciate any recommendations for Truform knee highs if anyone has any.

I would crash more at 2pm than at 6pm because I always feel worse at 2pm than 6pm. So maybe if effect you're riding out the crash when you stay out until 6? Like you I sometimes can feel much better when I'm out and about ( it really depends on the precise details of the situation) and almost think I must be getting better, but then I come home and totally crash and I realize, no I was using "energy " I didn't actually have, all along. I don't think it's my apartment though, I will feel a similar crash at other quiet and comfortable places, like in a quiet corner of the library in an arm chair. I think I have so little energy that when I'm out and about I'm holding myself with extreme tension just to walk, sit, wait in line, look normal, etc that that tension causes my blood pressure to rise as well as sympathetic nervous system to be activated ( not just heart rate but feeling "alert " ) and that makes me feel like I have more energy. But then I get home and the assault of the trial is over and I just crash because it wasn't real energy in the first place. I also think the crash is worse because I'm alone. I think it would feel less intense if I had a close friend I was talking on the phone with or something but I never do.

Instead of sitting or laying in bed for most of the day are you able to sit in an armchair or couch that still gives you a lot of support, but makes you use more muscles than you are now? I know that if I try and sit in a straight backed chair I'll soon feel like I'm melting toward the ground but in a very cushiony supportive arm chair I last much longer. How about standing next to your bed ( or chair) once every half hour just for a minute and sitting back down? When you're laying in bed do you have the strength to lift your leg and point and flex your foot a bunch of times? This is what I do. It's not much but it's working your foot and calf muscle a little bit, and that's a good thing.

Does anyone know if there's a test to not measure your oxygen in your fingertip but to measure if your head and heart are getting enough oxygen? I had a pulse oxometer put on my finger while I was standing and my oxygen was normal, but according to Dr Grubb it's not just your feet and calves in which blood pools when you're upright, but your hand and forearms, so no wonder my finger tip had enough oxygen! Im very curious about extra oxygen and oxygen machines too, as I'm often short of breath. I'd love to hear more thoughts or people who tried oxygen and if it helped or not. I also got out of breath when talking, especially if I have to talk loud, like in a train or a restaurant or most public places. Sometimes I'm just too short of breath to even talk, and I rarely have the energy to sing a song anymore like I used to like to.

I have my first neurologist appointment. I already have a POTS diagnosis, but no one is managing my treatment, nor has enquired into the cause. I've been on midodrine and Florinef, neither helped. My neurologist is just a regular one, and for all I know hasn't treated POTS patients. What to expect in my visit? Is there a physical exam ( I like to be aware before I'm asked to change into a gown)? Any tests to ask for, or treatments? Thanks for any advice!