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p8d

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About p8d

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    Female
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    Wisconsin

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  1. @Pistolyou might ask about tramadol for flares. I have taken that in the past without difficulties. At least until the hydroxychloroquine starts working.
  2. @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.
  3. @Pistol! I am glad that you are doing better. Whenever I start or stop just about any med I taper at about 2-3 times what’s recommended because I am so sensitive to everything. My Drs are all fine with this @KimOrlando is correct. Hydroxychloroquine helps a lot with my AI arthritis but it has to be taken daily, not just for flares and takes about 6+ months to start feeling the effects. It’s also nasty on the digestive system so I tapered up on that over months and even had to take a daily tiny dose of Imodium (with gastroenterologist’s permission) to tolerate it. Once I was on the final dose a few months I stopped that. You also have to have yearly eye exams, regular and Visual Field Test and blood work. It also helps with fatigue somewhat. I am glad that you are doing better. Hang in there!
  4. I was told that I needed to stop alpha and betas to have this tested again. Alpha first and slowly then beta also slowly. I did that last year to switch betas and it was difficult to say the least. Apparently you always should stop alphas before betas. I believe that you need to be off both for a week or more for this test.
  5. I was on this for 5 years and recently discovered it was raising my BP to super high levels for the last 3. I started it for neuropathic pain in my abdominal area (felt like the worst GERD ever) and that’s gone so I tapered off over 5 months. Perhaps it’s raising your BP just enough to ease the OH? It never did anything for my coat hanger pain. I am glad that it’s helping you, just keep an eye on your BP.
  6. A couple of things: my dysautonomia neurologist told me that they see onset in women more frequently around menarche, pregnancy or birth and menopause and she’s been researching/treating for 20+ years, including at Mayo. I have discovered mine Is autoimmune and it hit 2 years after menopause so I was still in that age range. I was repeatedly tested for autoimmune diseases and on the third test in 18 months after sudden, post viral onset one came back positive. Treating that has helped but is no magic bullet (I take plaquenill and now SCIG). I also sent my blood to Celltrend in Germany for testing for autoantibodies and the alpha a-1 came back positive too. I am still housebound but if I limit my activity to what I know I can handle I don’t feel like death every minute of every day. Exercise! Even when you don’t want to. I weighed 85# and was completely deconditioned a couple of months after diagnosis with symptoms similar to what you describe. I started exercising (at physical therapy in a walking treadmill) at that point and now do aerobics (stationary bike, rowing machine and treadmill) 20-30 minutes 3-4 times/week with PT supervised strength training most other days. It definitely helps. Start and increase *extremely* slowly. I still only increase by 30 seconds a week and have to have 2 days off after aerobic or I really suffer with fatigue. I do strength training the other days but if my body is really fatigued I just take a rest day but never more than one. I refuse to get so deconditioned again. Strong muscles, especially in the legs help get blood back up to the heart and brain. Does it stop tachycardia or palpitations or brain fog? Absolutely not but it prevents me from getting so very, very ill and every little bit helps. If your PCP won’t refer you to a dys specialist find another one that will. I found a great PCP on the Dysautonomia International state web group. There a WONDERFUL neurologist in Chicago, Dr B listed here https://www.dinet.org/physicians/ who specializes in dys and will definitely help you. Maybe call for an appointment now for when you get PPO insurance, most specialists book 6-12 months out. If you can travel to southern Wisconsin let me know and I will give you my Drs names. I had very similar digestive issues and was even on TPN for 6 weeks because I had such pain when eating. I went gluten free and supplemented meals with pea protein shakes to add nutrition and calories. I now am eating pretty much everything except nightshades and dairy. It took a couple of years to add gluten. Yes, my life will never be what it was but when I couldn’t die, and I really wanted to, I vowed if exercise and perseverance were what I needed to do, be it testing/exercise/diet etc I would do it. I am very stubborn which helps! I still struggle with stuff every single day but I weigh 120 pounds, have fantastic Drs and when I live within my (very severe) limits I am generally happy.
  7. I have an Omron device that I took to two visits with my dysautonomia neurologist to compare it to her digital one and had a 24 hour BP test because my BP was elevated (150-160/80-90s) supine or sitting consistently at home and at office visits. Arm position is critical. In my ortho vitals at the neuro office I rest my arm on the device at heart level when standing or sitting as I do at home. Because the readings between my monitor and all my Drs electronic monitors were similarly high we tried the manual one and then my Omron. Sitting they matched almost exactly. Ortho readings were off by similar amounts to her electronic device (10-30).. She said manual devices are more accurate. The 24 hour device is *extremly* tight and sensitive to body movement. If I was walking when it went off I always got an extremely high reading or an error. Otherwise it read much, much lower than my Omron (20-30 points), back into normal/mild HTN and even quite low in the morning (90s/70s). The only high readings that seemed credible was the 149/83 at the office when they set up and when out on a short walk while a bit upset. I did it on a very quiet day at home though. I have questioned the results with my cardiologist twice and he just said everyone’s BP fluctuates a lot and while it clearly documented hypertension when doing something “stressful” (reading something difficult, concentrating, phone calls etc), which is also well documented at every single Dr appointment for the past three years (I am home bound), that I can take an extra beta blocker or try carbidopa (haven’t been brave enough to do that yet) beforehand. He also said because my BP also goes down not to worry about it, it’s sustained hypertension that’s more concerning. After that I mostly just stopped checking at home unless I am changing meds or feeling awful which is clearly related to hypotension.
  8. Interesting thread. I seem to be mostly the opposite but with very labile BP too. I am hyper POTS with supine hypertension and immediate orthostatic hypotension on standing which slowly rises for about 5 minutes then decreases again. My worst symptoms are when BP gets too low. @Pistol I am interested in what you said about high diastolic readings. Mine tends to be elevated mornings and sometime other times regardless of systolic (dehydration I think). I am starting to wonder about my RAAS and if I am over medicated with carvedilol and guanfacine causing recent orthostatic hypotension drops with lots of symptoms. Weather is definitely a factor but ours has been pretty mild (60-low70s) for several days with steady barometric pressure and low humidity so I don’t think it’s that. My problem is if I don’t take the doses of beta and alpha blockers the supine hypertension is >150/80 which is what my Drs want to avoid. Like others every tiny thing, talking on the phone, Dr visits, concentrating causes BP to elevate to 150+/85+. A new cardiologist said “permissive hypertension” is ok but not >150/85 but will cause problems in a couple of decades (I am 58). I had never heard that term before. Anybody else ever heard of that?
  9. @Pistol is correct. She’s wise! On the advice of my dysautonomia neurologist I have found that drinking 8-16 ounces of water about 15 minutes before getting out of bed helps with morning dizziness and everything else that follows—tachycardia, shaking, tremulous etc. When I was at my worst I drank a liter of water and took a few salt capsules. The theory is that it increases the blood volume which you have lost overnight.
  10. Do you know if you have hyper mobile joints? hEDS? When the joints are lax it forces the muscles to do the job of the tendons/ligaments and in me anyway it results in huge knots in my neck/shoulder muscles and pain. I suffer terribly with tension headaches that lead to migraines. I have been doing 3.5 years of physical therapy and part of that is strengthening my traps and other neck muscles to lessen the knots/stress. I do stretches daily too. The therapist gives me (or did pre Covid-19) massages and heat therapy which I do at home with a hand held massager and heating pads. She also does an occipital release, you will need to look that up. I just purchased a device to do this but haven’t used it yet. I also use a cold pack on my neck/shoulders after exercising my upper body which definitely gives me headaches. I have tried prescription muscle relaxers but most have side effects that are intolerable to me. I have found that pillows designed for neck pain help. There are a few different types of hats that you put ice packs into that really help when I get a migraine. One is called IceKap. That one has a cold pack that goes down your neck and around your head. I hope these ideas help.
  11. Congratulations! That is amazing and you are one strong woman. I know that the pressure pressure from water helps the blood get back to the heart and that helps everything. I am awed that you could do the whole trip!
  12. @Pistol I am sorry that you are suffering. I know it well. I tried hydrocortisone 5mg, probably a half tablet a few years back for joint pain from UCTD and it gave me tachycardia. I don’t remember what it did to my blood pressure but I think it raised it. I have found the greatest relief from hydroxychloroquine at the right dose. I know that you tested negative for autoimmune disease but so did I for 30 years before one turned up positive on the third test in 18 months. It might be worth asking for another test?
  13. I didn’t sleep more than a few hours a night for 2+ years until I was put on teeny tiny dose of mitrazipine. I still have a few nights a week where I wake up early or am awake for an hour or more but getting proper sleep really helps.
  14. Ok, for those of you that have more brain power than me, after reading the most recent article should we try Losartan? Anybody tried it recently? Experiences? I have read many of the old threads and like everything it seems like a mixed bag of experiences. I know I have the alpha a-1 antibodies. Thanks.
  15. My BP drops immediately, HR goes up then BP comes up around 2 -5 minutes standing still with HR decrease, then at 10 minutes BP starts dropping and HR goes back up. This is on lots of meds. I think it did something similar on the tilt (no meds) but that experience was so awful I think I have completely blocked it from my mind. Plus it was 5 years ago.
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