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  1. Today
  2. Hey y’all, since someone in this thread already mentioned testosterone, I feel more confident in my current theory that (at least personally) it’s a hormonal issue. The pinpricks and itching happen for me worst during/after a hot shower, at the beginning of a workout, or when I first step outside into a hot + humid day. It started when I was prescribed a shot that blocks estrogen and then went away after the shot wore off and was fine for about 2 years. Started again (but not nearly as badly) when I began doing biweekly testosterone injections. Might be worth going to an endocrinologist to get your levels checked if the issue is burdensome enough, though aside from maybe prescribing you something that raises estrogen levels, I don’t know what the treatment would be, or if a doctor would even be willing to do something experimental like that.
  3. Yesterday
  4. @MikeO - Premature Atrial Complexes (PACs) Causes and Treatment (verywellhealth.com)
  5. @MikeO - PAC's are simply premature atrial contractions, meaning they are an early beat that originates in the atrium. They are generally considered harmless, just like other premature beats called PVC's. During times of stress ( like a TTT ) we can develop them more easily. They also are pretty common for dysautonomia. I used to get hundreds of PVC's and PAC's when I was not controlled, beta blockers often help. Don;t worry - if there was anything serious with the EKG strip your interpreting cardiologist would have made you aware.
  6. @Pistolare PAC's anything to worry about?
  7. @MikeO - the Twave is actually normal, it is the following premature beat that is the abnormality. Since the premature beat appears to have a P-wave it is most likely a PAC
  8. dug up more strips from the tilt table test. Hoping someone might recognize this funny looking t wave. I do get a lot of them.
  9. Dear @Nathan when I was at my worst I would get the same symptoms you describe when exerting myself, including using stairs. However - I would NOT necessarily just write that off to dysautonomia. In my case I ended up with a heart cath and they found a type of angina that is caused by sudden constriction of the coronary blood vessels, same mechanism as in Raynauds, which I also have. Anytime you experience symptoms as you describe it should be taken serious and be discussed with a physician. I would make an appointment with your PCP - definitely an EKG and possibly even a stress test would be appropriate depending on your health history.
  10. I was on both for a while, and I only ever took guanfacine 0.5 mg twice a day. Once the infusions started showing lasting results I was able to completely go off the guanfacine ( over 3 weeks ) and decrease both Diltiazem and Carvelidol. Weaning off guanfacine can be tricky - I did well, but my sister was on the ER version and it took her forever to stop it.
  11. Sorry you are still suffering from this awful virus. I'm not sure if this helps any but my husband's step-mother ended up with bad cellulitis in her legs after she came home from being hospitalized with covid-19. She was so weak and on o2 and needed to go to rehab but all the facilities were full. She ended up having home health care and eventually the cellulitis went away with more antibiotics.
  12. @Pistolthat is so encouraging to hear how you’ve improved! Infusions don’t help me unfortunately. Did you wean Guanfacine after starting Diltiazem? I’m so dang tired on 1mg Guanfacine am and 2 mg pm, it’s hard to function. Now that Diltiazem is helping, I would LOVE to wean Guanfacine but I’m afraid when I remember the sympathetic overdrive insanity before I started taking it.
  13. Last week
  14. This looks wonderful. Thank you so much to the volunteers who made this possible.
  15. I really struggle with stairs because of pots. I haven't got any heart issues so don't worry something is wrong with your heart. Do you struggle with just walking as well? I'm so exhausted from walking and only seem to be able to walk for a few minutes before I start struggling. Its so frustrating having all these limitations.
  16. I do watch the hospital capacity reports for wisconsin. for the 9 county area that i live bed numbers do abe and flow but are not great. Not all of these are are covid cases. I have noticed that deaths do free up ICU beds. https://www.wha.org/COVID19Update
  17. Oh you two @Pistoland @cmep37this happens so fast i can't even react to it. This does suck @Pistoli did post that getting lightheaded i would drop to the floor and pretend i was tying my shoe in public. Thursday i was sitting on the garage floor sorting out tools stood up and stared whooshing really bad (and yes went beyond that) I did get experience the low bp convulsions, legs wobbled and went down. All i can say is i am so trying to resolve issues and so is uwm madison. A good hug will help.
  18. @MikeO - sorry this happened to you again! Like @cmep37 I too used to constantly pass out and get hurt. Today I know the signs and ( thankfully it has not happened in over a year ) usually can prevent falls and injuries. I simply lie down, where ever I am, just drop to the floor. Sometimes even squatting helps. That is exactly why I used to pass out and get hurt all of the time! I thought fighting it or ignoring it would just make it not happen. Today I am wiser, and can prevent most attacks by lying down as soon as the slightest warning sign happens.
  19. Ouch @MikeO - no warning at all, that has to be tough! Before I got used to having POTS I would faint a lot when my HR got too high but I did get some warning - ringing in my ears, tunnel vision - I just kept thinking if I ignored it it would go away!
  20. @MomtoGiuliana @yogini I recently had to be admitted to the hospital through the ER for COVID pneumonia. I had to go 3 times to the ER, much worse every time, before they admitted me. While waiting for a bed one of the nurses told me that they receive calls every day from other rural hospitals to take patients because most hospitals in the state are over run with sick COVID patients. And if this hospital had more patients than they could admit there was no way for THEM to go because all the bigger hsopaitals will not take patients either. I think this is unfortunately a real and not unusual scenario right now.
  21. Absolutely agree with all you say. And this is an important point as well. We are all at higher risk for health problems when hospital beds, ICUs and ERs are full. It's another reason to avoid risks right now to extent possible. I know our regional hospital has put out the message that people should not go to the ER unless absolutely essential. There are very long waits and they are understaffed.
  22. Well happened again. I should have known something was up when my bp dropped to 99/69 on wednesday evening. This time i piled right into my tool chest in the garage. At least i did not hit my head this time. Nurses at cardio rehab are going to be all over me as i can't hide the bruising.
  23. @Rexie - thanks for the article, that is interesting. I am slowly improving.
  24. @CJBI too am on Diltiazem, and it has been sooo helpful! I used to have a lot of problems with vasoconstriction, ( raynauds syndrome, prinzmetal angina ) and my BP would either be high and cause seizures from no cerebral circulation, or it would suddenly drop and I would pass out. Since the Diltiazem ( and IV fluids twice a week ) this has improved. I also am on Carvelidol. My BP's now consistantly run in the 100/60 range.
  25. Pistol! Get well soon! Apparently COVID-19 is a systemic multiorgan viral invasion and symptoms like yours have cropped up after initial COVID infection and is referred to as Acral edema and may include numbness and fluid leakage from small blood vessels in the area due to increased vascular permeability. It usually last 6 days or so. See: Acral edema during the COVID-19 pandemic, Jara Valtueña MD, PhD, Daniel Ruiz-Sánchez MD, PhD, Victor Volo MD, Pilar Manchado-López MD, María Garayar-Cantero MD, International Journal of Dermatology, Vol. 59, pp. 1155–1157; 2020: https://onlinelibrary.wiley.com/doi/epdf/10.1111/ijd.15025 Dermatological manifestations associated with COVID-19: A comprehensive review of the current knowledge, Mohseni Afshar, Z, Babazadeh, A, Hasanpour, A, et al, J Med Virol., Vol. 93, pp. 5756- 5767; 2021: https://onlinelibrary.wiley.com/doi/10.1002/jmv.27187 Be of good cheer...
  26. @Scout I think many of us have some degree of baroreflex impairment so you don’t need to have the neck or genetic component, but for true failure, those are likely culprits. Labile pressures are so hard to get a handle on, I totally agree with @Pistol about trying a CCB I just started Diltiazem in addition to Guanfacine and propranolol and the CCB is making a big difference for both HR and BP.
  27. I'm sorry pistol you have had such a hard time. This virus is brutal!
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