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Posts posted by RecipeForDisaster

  1. I can’t hold the bag up for very long at all to even go up or down the stairs - I thought about getting a pole for each level of the house. It rolls really poorly in my house anyway and I carry it most everywhere. I do hang it in the bathroom when I’m in there, but I would really like to go out on little car trips (it doesn’t work - the bag can’t be hung high enough) and even walk. 

    We are looking at using a pressure infuser bag to mimic gravity inside a backpack. I hope it will work!

  2. When I use IV fluids, I’m hooked for many hours. I have 3 levels in my house, uneven ground outside, and a lot of trouble managing trying to keep the pole rolling all over the place through my entire waking time. I can’t get a pump from my infusion company because I don’t use the fluids consistently enough. I don’t really blame them - the pump is quite expensive. So, I have to have the bag above my arm and upright.


    I have not found a reasonably priced and decent looking solution online. There was a kid who designed a backpack - looks like I could possibly make my own. It would have a half pole sticking up from it and somehow it would be stabilized. If I could leave the house, go for walks, etc., I would absolutely use the fluids more often. I can’t hold my arm up for very long, or I’d just hold the bag up with my other hand. How it is now, I only use fluids if I can stay indoors and home for my entire day and evening - that isn’t that often. I would love to hear any creative solutions!


    I'm also trying to play with running the fluids overnight, but it wouldn’t be enough hours - my ideal run is 2L over 17 hours or so. We start when I wake and remove it when I go to bed. When I’ve tried it overnight before, I’ve had a lot of soreness that kept me awake, and I was afraid to move too much and dislodge the catheter. 

  3. I sure have a bad taste in my mouth - they messed up everything about my referral, had me do a short, bland survey (they refused to take any medical records, results, or letters from doctors who wanted me seen there) and then declined to take me. They were not doing telemedicine when COVID was in full swing, either. They told me I’d have to travel. Irresponsible if you ask me. 

    They seem to love that chronic fatigue clinic. That’s not when I’d be going there for! I have a lot going on that’s mostly undiagnosed-abnormal labs, very low BP that is hard to treat, connective tissue abnormalities, etc. I was pretty disgruntled that they didn’t want to see me before they had much of any information on me. I’m looking at NIH and hope to do that remotely.

  4. 5 hours ago, Pistol said:

    Well - I have found the barometric pressure to definitely be a cause. I have been feeling very well in my home at 2500 feel elevation in the Appalachian mountains. The spring temps helped a lot in being able to get around and feel almost normal. I was doing so well that I agreed to go on short trip to the ocean with my family. Long story short - as soon as I got out of the car after a 7 hour drive POTS came back full force: palpitations, cold hands and feet, inability to be up for long, fatigue, diarrhea … I had to stay in the airconditioned room all day and only could venture out in early mornings and after sun set. 

    Thank god I have a port and brought my IV stuff with me. The second day I gave myself a liter of fluids and felt much better, even able to stroll briefly on the beach. 

    So - this is just simply proof for me that even after a very long good spell we are not really over anything - with the right meds, staying within our limitations and avoiding triggers we can manage - but as soon as we venture off it's back to square one!!!! 

    However - I would like to add that without fluids handy I would not have been able to go at all - and it is very important to my family to make vacation memories with me. So I am grateful for the port and the ability to have fluids available anytime I need them. So sad that IV fluids are still not a known go-to fix for acute flares. A port is not needed unless they are given weekly or daily, so everyone should just be able to walk into a clinic or ER, mention POTS and get a bag. 

    I know that weather definitely affects me, too. My major point is about how frowned upon fluids still are in mainstream medicine. It’s like you’re asking for morphine with most doctors. It makes no sense to me - they don’t offer alternatives, and no one ENJOYS getting IV fluids!

  5. It’s actually been very helpful for my low BP and fluid volume. You just have to be really careful not to drink too much unsalted water. 

    I wouldn’t think it could increase other med' s activity on its own, but the brain changes could certainly make you feel weird. I just feel off, get a headache, and nausea if I’m starting to get hyponatremic.

  6. I feel totally abandoned and have fallen through the cracks even without being cleared by about 6 of them - I’m actively seeing them. However, I have had specialists clear me very prematurely without trying to help, from the first visit: rheumatology, endocrinology, etc. my issues have only continued to worsen. I feel for you!

  7. It needs to be regular licorice root, not DGL:

    De-glycyrrhizinated licorice (DGL) has been manufactured to avoid the side effects of licorice by removing the active compound glycyrrhizin .

    that can increase BP and fluid retention, so healthy people don’t want to take that component, but it’s important for us.

  8. Sigh. I cannot get a hold of the doctor promised he’ll write my IV fluids (since my other doctor got fired by the hospital). I have 2 emails and 4 calls in over the past month. None have been returned. I think they’re actually closed because of COVID. Their office is awful but he is wonderful. I have ONE day of therapy left and I’m saving it for a really bad time. It sucks!! One new doctor I have agrees I need the fluids but "we don’t prescribe them". Most of my others also refuse as a rule. I have unreturned phone calls to 2 others just in case. 

    I’ve had PPs of 8 before. 

  9. I get this in any "small" body part touching the mattress - ear, elbow, heel, etc. I haven’t gotten any help with it and my doctors don’t seem interested. The pain wakes me often.


    I am wearing pillows wrapped around my feet... it helps them for now. Please update me if you get it figured out! 

  10. I am currently searching for a PCP in R.I., so not too far away. I’m asking my specialists if they know anyone they’d recommend. Please share if you find someone!

    I think my PCP believes in it, but he is patronizing and just wants me to get used to everything. He also blames ridiculous stuff on my meds when it’s not possible (as in I was losing weight well before I started adderall, and now I take 2.5mg once weekly when I need it, down from daily, partly to make him shut up and partly because it's expensive. Come on!!!). 

    Good luck! I know how frustrating it is.

  11. I use taurine, and I find it helpful although I haven’t pushed the dose yet. It sure hasn’t lowered BP for me - that would be bad.


    My mom found it a life changer!! She was going crazy from high HR and palpitations, PVCs, etc. and couldn’t tolerate a beta blocker or calcium channel blocker. She is thrilled with this stuff.

  12. I had a very hard time getting desmopressin - but it makes a much bigger difference for me than fludrocortisone did, and the best part is, I can take it as needed instead of having it built up in my system. The side effects are less with desmopressin, too. If I take too much (I have a script for 0.2mg twice a day, which I’ve never gotten up to) I get headaches and weird feelings, but it helps my BP and gives a nice boost. I wouldn’t call it a life changer, but it’s about 1/3 as effective as a liter of IV fluids. It’s great to have in a pinch.


    I didn’t have great benefits from fludrocortisone, mostly lots of edema and migraines, but most others seem to do well on it. I do take licorice root in its place, which helps without side effects.

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