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About p8d

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  1. p8d

    POTS and beta-blockers

    I am so sorry that you both have to go through this. Like many here I tried a number of betas that caused extreme fatigue before my cardiologist recommended Bystolic. It’s cardio selective and works well without the fatigue. It’s once a day dosing for most people which is how I started. I took it at bedtime so I slept through the fatigue. I now take it 3 times a day which is highly unusual but works for me. It takes a lot of trial and error to find one that helps.
  2. p8d

    Anti - G treadmill

    @Pistolwell it’s not that great. The longest I have done on the treadmill is 6 minutes but was faster than my usual snails pace. It took me 4 days to recover to my usual fatigued state. The longest I have managed to be up and walking around, usually cooking, is around an hour but as you say, on a good day. I take complete rest days before and after PT, dr appointments or visits from friends otherwise it takes me even longer to recover. I do take modafinil on those days because I am so incredibly fatigued. It’s taken years to learn to manage exercise and activities and meds and believe me, I am always tweaking things depending on how the day is. You know, the usual. When I started PT I was barely 100 pounds and tested very, very weak. It was shear determination to never go back to 85 pounds and basically bed bound. Last week I tested “ normal” in upper and lower body strength with significant improvement in core. I had a long way to go but I never take more than a day off, allow myself to backslide as ne necessary but never, ever stop exercise. Thanks for reminding me how far I have come!
  3. p8d

    Anti - G treadmill

    I now, 2 years later do aerobics, stationary bike and rowing machine at home 3 times a week and various upper, lower and core strength training. I also do balance work on a Bosu board. When I go to see her I do balance work, tweak exercises and a regular treadmill. I am not on the treadmill very long yet but might get on as a Christmas present and work on endurance.
  4. p8d

    Is this POTS?

    I too have hyperadregenic POTS. A couple of things jump out at me. For the high BP/HR, jittery/anxiety are you on an alpha blocker? Methyldopa or clonidine? These symptoms can be a norepinephrine surge which the two drugs block. I have taken both, clonidine works better for my high BP but I can only take 1/4 tablet or my BP drops too much. The other thing is if your ANA is elevated with no specific findings are you being treated for autoimmune disease? Do you have other symptoms of autoimmune disease? Have you had the Mayo dysautonomia or Celltrend autoimmune panels done looking for an autoimmune Dysautonomia? I have a positive ANA with multiple diseases and have the diagnosis of mixed connective tissue disease which I take Plaquenil for. That helps with fatigue and aches and pains. I also tested positive for one of the Celltrend antibodies. I am starting SCIG in November.
  5. p8d

    muscle pain & stiffness

    Have you seen a rheumatologist? Is it the ESR that’s elevated? A good rheumatologist will diagnose an autoimmune issue without a positive ANA. I am 56 and was diagnosed with Mixed Connective Tissue Disease after I developed full blown POTS although I was tested multiple times for AI for 30 years before. When my AI flares I get lots of joint and muscle aches and pains. When I started Plaquenil it helped quite a bit with the aches and pains.
  6. p8d

    In Praise of our Caregivers

    Thank you @WinterSown. How lovely to remind us to cherish these hard working people. I would probably be dead without my husband and certainly wouldn’t have had the care I need without him. He does so much with humor and grace and I sometimes forget the sacrifices he makes for me.
  7. p8d

    Anti - G treadmill

    @Pistol I tried Ritalin which gave me tachycardia so switched to modafinil which works ok. I used to get even worse fatigue when it wore off but have found times and doses that help. I am noticing that it isn’t working as well the longer I am on it so now I try to take it on bad days only. Unfortunately I have a lot of bad days. I also get most of the cognitive issues that you mention along with car sickness. It’s like my brain can’t process the input from moving that fast quickly enough. I haven’t tried guanfacine yet. That constricts blood vessels or am I thinking of something else? I do swear by exercise, no matter what. I also have to build in rest days after Dr appointments, PT, anything exciting. PT is my rock.
  8. p8d

    Anti - G treadmill

    I used a water treadmill which I think is similar for about a year. It was at PT once a week and I credit it and my physical therapist for getting me upright sometimes for about an hour. I can do more daily activities around the house as long as I am not standing still (I am still house bound) but it helped a lot with strength and endurance. I also did strength training and the combination was very helpful. Now if I could only find a way to beat the fatigue. Give it a try if you can.
  9. I was exactly the same as bombshell. I desperately needed to gain weight early on and now am at 7.5mg and I’ losing some of the 40 pounds I put on. I needed about 30 pounds. Exercise, even when I am exhausted beyond measure also helps. Just a few minutes if that’s all I can do.
  10. I had early waking for 18 months and tried every prescription and non-prescription drug available. I finally hit on mitrazipine which my primary care Dr ordered. I selected it because I have hyper POTS and it has alpha blocking properties (see https://psychopharmacologyinstitute.com/antidepressants/mirtazapine-essentials-every-prescriber-know/ ). It works great and I have lowered the dose substantially over a couple of years. It also didn’t give me tachycardia which other meds in the antidepressant class did. When we upped my beta blocker I started having trouble again I found this article https://www.aarp.org/health/drugs-supplements/info-04-2013/medications-that-can-cause-insomnia.html and started taking extended release melatonin. It helps quite a bit. I still have rough nights that make the next day rough with a migraine but in general I sleep well.
  11. p8d

    Saltstick vitassium

    @StayAtHomeMom I used to take several a day but have developed hypertension and have cut down. I take 2 with 8 oz water before I get up then 1 with breakfast and that’s it. If I don’t have enough fluids and salt I get tachycardia, sometimes with high BP, sometimes low BP (mostly mornings). This is very different from when I first got ill 4 years ago. I also need more in summer.
  12. @Pistol I tried HRT, BP got crazy high and went down to tolerable levels a couple of months after I stopped. I do get some supine hypertension but it’s not nearly as bad. I have developed pretty intense baroreflex sensitivity, drinking 8oz of fluids raises my BP by 20-40 sys so now I actually limit fluids during the afternoon/evening. I am getting a bit of a handle on how much to keep the tachycardia away but everyday is different. This is way different from when this all started 4 years ago.
  13. p8d

    Saltstick vitassium

    I take it, it works well plus a % goes to one of the Dysautonomia groups. Can’t recall which right now.
  14. I am four years post menopause and have recently developed hypertension, mostly during the late mornings and afternoons. Cardio called it essential hypertension. I take clonidine to lower it. I also get very hypertensive with too much activity, dr appointment, PT, visitors or being upright for longer than a half hour or so. I take an extra dose (1/4 tablet) of clonidine if I have something scheduled. The problem is for unscheduled things. The clonidine lowers my BP in about a half hour. I am also on Bystolic, a beta blocker.
  15. I found this article and presumably will the boos interesting. They offer a new take on chronic illness and disability. https://www.buzzfeednews.com/article/annaleahy/living-with-chronic-pain-that-cant-be-fixed-ada-limon