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Posts posted by RecipeForDisaster

  1. It’s amazing how no one seems alarmed about my weight loss, either. I am quite light for my height and was never overweight. I supplement calories like crazy and still don’t gain... I have no GI issues but also lost my appetite permanently about 18 months ago. I force a lot of meals anyway!

  2. 11 hours ago, Pistol said:

    Dear @merkat30 - I question the accuracy of the BP equipment that took the reading you posted. I do not think that you would be capable of actually having a diastolic BP that high. No doubt you were hypertensive but these digital BP readers are notorious for taking inaccurate readings when your BP is either too high or too low.  I found that to be very much the case for me, I only use a manual cuff since several digital ones were consistently incorrect when I rechecked readings manually. If possible I would get a different, more accurate machine, or get a manual one. Most Retail pharmacies can teach you how to use one correctly. 

    I too have both high and low BPs and could not at all tolerate Clonidine, but we are all different. Be careful!!!

    Me, too, exactly. I bought a quality BP cuff and it never accurately measured my BP which is low. I would do one arm manually or have my RN husband do it, and use the automated cuff on the other arm. My BP doesn’t vary that much between arms, and I'd get something like 74/56 manually, and 118/70 with the automated cuff. I have the same experience in medical settings. "Oh look, your BP is great!" when I was talking when they took it, and just came in from traffic and aggravation, AND they use a machine. I think they are good - I used them as an EMT - but not meant for those low (or high?) readings. 

    The problem is that they always want to set me up with a 24 hour monitor - that would make me look like a liar since the readings would be inaccurately high. I have charted hourly BPs for more than 24 hours.

  3. There are legitimate versions available... but these were a lot cheaper! I stitched the edges of the pillows together, but I tried just using Velcro straps at first. Thanks, though! I love to "invent"!

  4. Can you take a bath instead of showering? It helps me to be laying down and have the pressure of the water around me. You’d probably like weighted blankets like I do - to me they are the sleeping equivalent of compression stockings. I also use sequential compression devices for a hour or so each evening. That machine doesn’t want to go into the shower, though. I have a really hard time getting my 30-40mmHg stockings on, so I use a mixture of these interventions.

    The stockings are definitely hot in the summer. I try to keep splashing myself with water...

  5. I bought mine from a PT office, too. I agree, it’s crazy how cheap these have gotten! Good luck! I’m super cautious and careful - I think it took me a year to get up the guts to put this together and try it. 

    I find that the ear clips ache after an hour or so, so that’s how long I leave them on. If they could be a bit more loose, I would use them for longer.

  6. This is what I use:

    it would hurt a lot if you put regular electrodes there, I think. There are papers where you can see what settings work well. My doctors are really impressed with this therapy (they knew nothing about it but liked the idea), even if it was my research that got me here. It is a little DIY, but since the approved device isn’t available here and is expensive... it does the trick.

  7. 10 hours ago, PotsieCrocheter said:

    I did a bit of research on using ear clips with a TENS device. It shouldn’t be used if you have a history of cardiovascular problems, electrical heart implants, cochlear ear implants, trauma to the ear, open sores, facial or ear pain and the list keeps growing.

    The scientists/doctors who do research on this have long exclusionary lists of conditions that can’t participate in research. I also read you have to keep the TENS at a specific frequency or it can be problematic. I personally don’t like the concept of altering any medical device. 

    I’ve been told never to place TENS pads on or near the the head, the proximity to the ears sends red flags to me, especially for a DIY project. 

    Do what you feel comfortable with, then. I did months of research and was supremely careful when setting this up. I have continuous HR monitoring but I’ve never had an issue with low HR. 

    I'd never put the usual TENS electrodes above the neck. The ear clips and use of specific Hz and pulse width makes this a totally different animal. I’ve been using it for a long with no ill effects, just positive ones. The TENS needs to stay at a particular frequency no matter what you’re using it for, unless you’re doing some odd variable therapy I’ve never heard of. I did not alter the device one bit - I am using TENS ear clips. Just trying to help - I got most of my information to start with right here and I was very grateful for it.

  8. 12 hours ago, Delta said:


    For me, definitely getting enough sleep and not waiting too long between meals, even if they're just small meals. 

    Sleep! Not much helps as much as sleep does, but I rarely get nearly enough.


    For me, I do better when I don’t eat, unless I’m really hungry, which is not common. If I’m hungry, I’d better eat, but if not, I will usually regret it.

  9. 23 hours ago, p8d said:

    @RecipeForDisasterwhich transvagal device do you use? If you can’t public ally say can you please send me a message? I am interested in one that’s only available in countries outside the US and uses an ear clip. Thanks.

    For me with my AI linked/caused dysautonomia I use SCIG. It helps. It’s not a panacea but every little thing helps.

     I also find a few minutes (5-10) of light aerobic exercise helps on the days I am rather (as opposed to terribly) fatigued helps. If I am terribly fatigued I take a rest day entirely.


    I made my own using a TENS device and an ear clip! There are tutorials online or I can help. It’s similar to the one you can’t get in the US. 

    Oh, and exercise is a definite - I forgot that one. It helps some things and hurts others, but I wouldn’t be without it.

  10. 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!

  11. 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. 

  12. 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.

  13. 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!

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