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About p8d

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  1. Tachycardia

    Mine hit 160 on the tilt table.
  2. Osteopenia

    My own thought, not discussed with Drs, is that we don’t use our big muscles and bones enough to keep them strong. Are you doing strength training of any sort? It likely can’t hurt. My vitamin D was low too but has come up with supplements. I’v read, no idea where, that some Drs and/or countries use hormone replacement therapy for osteopenia. My GYN put me on it a year ago for something else and I think maybe, perhaps, possibly that it helps the dysautonomia. I’m not sure, I just recall seeing some improvement at that time although I started a different beta blocker about a month later so? What I’m trying to say is don’ be afraid of HRT if the Dr suggests it. As you say, it’s always something. Please let us know what happens.
  3. I tried five betas, same results as you before I was put on Nebivolol and absolutely love it.
  4. I frequently get this way before I get diarrhea but I haven’t associated it with low BP or high HR or adrenaline rushes or anything. I always just thought it was a pre-diarrhea phase and drink oral rehydration salts to replace electrolytes and go to bed early. My father-in-law used to get the same way before diarrhea when he had congestive heart failure. I’m sorry I don’t have anything more to contribute. I do hope that you are feeling better today.
  5. Purplish Legs

    Hi @gh0st. I was felled very dramatically after two nasty viruses in a week. Absolutely disabling symptoms and all of them except fainting. I can tell you the hour that my ANS broke. I had very minor symptoms before and went through several years of high stress in the years before I really got sick which I think were contributory. I went from working full time, socializing, traveling to house bound literally overnight. I have a very good group of Drs that treat me at an autonomic group in my area and another at a university hospital also in the metro area. I thought I had CFS, still think that, and read a book that suggested that CFS is related to autonomic dysfunction so I booked an appointment with a specialist neurologist. I was in the room 10 minutes and she figured it out. I had never heard of dysautonomia or POTS before. I had no idea how lucky I was to have Drs in my area that treat it and to be diagnosed in about 6 months. Fortunately no one thought that it was all in my head but being over 50 Drs tend to take you more seriously. I saw 11 Drs before being diagnosed and all my tests were normal. Good luck to you too.
  6. Purplish Legs

    @bombsh3ll the first pharmacy I got my prescription stockings from recommended the device attached. I don’t know what you call it but it’s great for getting them on. I get the Juzo stockings with “silicone beaded” top and they stay up great. My Sigvartis stockings don’t stay up quite as well but I bought some of their “It Stays”. It’s very sticky and works very well. Apparently it’s like what celebrities use to hold up revealing outfits. We’re stars!
  7. New and Scared

    I suggest that you keep a log of BP/HR symptoms to show the cardiologist and the folks at Vanderbilt or elsewhere. I’m three years into this and still keep records if I feel poorly or start new meds. The disease causes lots of fluctuations in BP/HR so try to not freak out too much unless the BP gets really high again. My Drs say not to worry unless it gets over 180/110 but you should see what your cardiologist says. When I catch a virus my BP and HR go high so you are not alone. Fludricortisone dosing is very tricky for me. I take a half of a 0.1mg two days then a quarter tablet the next day. It took me years to get this dose figured out and I still adjust as needed. I strongly recommend getting to a POTS specialist, cardiologist or neurologist. Check out the main page of this site for a list.
  8. Purplish Legs

    Hi @gh0st. I wear thigh highs because I can’t tolerate the waist-high ones. I like Juzo and Sigvartis brands. Juzo you can get tie-dyed in some colors. They do sell non-prescription strengths. I’m severely disabled so put them on as soon as I get up and take them off right before bed. They help keep blood from pooling, raise my BP somewhat which lowers my HR somewhat. Lots of salt capsules and fluids also help my blood volume. Nothing reverses my symptoms but meds, stockings, fluids all help a bit. It’s been three years of trial and error so far. More to come. I have flares which are frustrating but part of it all. Lots of less severely impacted folks only wear compression garments when they know they will be upright for whatever reason. I suggest getting a device to help get them on although recently the companies provide flimsy-ish items to help which aren’t as helpful as the “hardware” ones.
  9. Interested, @Pistol. I will ask my neuro. Thanks
  10. Purplish Legs

    Many people report being more symptomatic before their periods. My neurologist reports a surge in diagnosis during puberty and menopause so it pretty much has to be related somehow. I’m no medical Dr but you might want to try OTC compression stockings and see if they help. I use prescription ones and they help somewhat.
  11. Thank you all for the replies. @ANCY I find it very interesting that you reacted similarly to IVIG as I did to pred. The high BP/HR especially. It must be a dramatic improvement to make you deal with the side effects and still want more IVIG treatment. I will be interested in what your immunologist discovers. To be honest I am rather frightened of getting IVIG primarily because of the high BP/HR but the meningitis sounds really scary. Have you been checked for the Mayo autoimmune panel? Mine has been negative twice so it seems my Drs don’t want to battle the insurance company for the same reason of being denied. Thanks again.
  12. How have any of you reacted to prednisone? I took a teeny tiny dose for two days for my MCTD flare and had high BP and HR for three days but now my BP and HR are better than they have been since I got sick. At least for the past two days. Absolutely everything else is the same, fluids, salt, supplements etc. This seems to lend credence to an autoimmune issue with me. My Drs are considering IVIG. Would my prednisone experience be indicative of any reaction to IVIG? Thanks for any comments.
  13. Compression stockings, whether prescription or not if you can’t get a script from your Dr help a lot of us.
  14. I’ve been diagnosed with hyperadregenic POTS for 3 years. My BP and HR are all over the place with BP especially increasing to 140s-160s/80-90s during the day. Generally messing with my fludricortisone dose allows me to keep it around 130-140/80-ish. I take methyldopa mid day for the norepi surges. I’ve noticed that recently my HR only stays comfortable in the 60s when my BP is 140s/80s or higher. My BP dances around excessively based on oral fluid intake so I can usually raise it that high with a liter of water/rehydration salts but not always and not at all recently. Lately it’s been high HR and high BP which PRN beta blockers only lower BP not HR. I’m just wondering if anyone else has experienced this? Any thoughts? I will ask my cardiologist in April when I see him. Thanks.
  15. Hyper Pots & exercise

    Beta blockers can impact heart rate during exercise so my cardiologist and PT tell me to go by “perceived difficulty”. I don’t know if alpha blockers also do this. Can you get an order for PT? I have worked with several over the years both at home and eventually at a small clinic. I go once a week when I am well and I find it helpful not only for exercise help but to ask questions and have things documented on my chart for my Drs to see. I started on a bike very slowly, literally 2-3 minutes when I was extremely bad and eventually also got a rowing machine and worked up to 30 minutes every couple of days. I do strength training other days. At PT I started with a water treadmill and now do a regular treadmill but I haven’t been to PT since late November because of flares and fear of the flu. I intend to go back as soon as the flu slows down. I try to listen to my body and only do what I can manage. I’m in a bad flare right now and have had to back off considerably. It’s vital to maintain fitness and helps a lot with fatigue, sleep, mood and ability to be upright even if it isn’t for very long. I consider it as important as medication. You can do it!