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Everything posted by MomtoGiuliana

  1. The symptoms you are describing are consistent with symptoms I have had when in a flare up. When in a flare up any small stress can set off worsened symptoms in my experience. There was a member here recently describing worsened symptoms after a blood draw. This can be a vasovagal reaction that causes a cascade of symptoms. I agree with Pistol that fluids generally help me when symptoms worsen. Rest is also beneficial.
  2. Is there any data yet about the interaction of autonomic dysfunction and COVID? eg, is there higher risk to develop long term symptoms if a patient already had dysautonomia prior to their infection? Is there any data to suggest that dysautonomia is a risk factor for other complications?
  3. I've been confused about that too and only recently realized it is possible to get a third Moderna shot. Thanks for sharing. Glad you are well protected.
  4. This looks wonderful. Thank you so much to the volunteers who made this possible.
  5. 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.
  6. So sorry. I haven't heard of swelling as a typical aspect of COVID but I have heard of many people developing rashes weeks after the initial infection. It can definitely cause some weird and long lasting symptoms.
  7. I can understand your fear. I am not aware of any information/studies linking tetanus shot to dysautonomia. I would think a tetanus infection would be far worse outcome and if you are at risk for that, the booster surely makes sense.
  8. I know the feeling you are describing. Salt and fluids and compression have helped. A low dose beta blocker has helped. What has helped the most is IV fluids when I am in a flare. It is also best not to lie down too much for too long, I find. Obviously you need to sleep. But I do not let myself stay in bed longer than 7 hours when in a flare--bc I just end up feeling even worse. I force myself to stay upright during the day--even if I can't do much more than sit up (unless I feel faint--I have never actually fainted--obviously you do not want to force yourself to stay upright if you may faint). In flare ups I can feel very poorly and walking or much activity can be very difficult.
  9. Aschc good to hear that. The risks associated with the vaccine are very very low for most people, and the risks associated with COVID infection higher to much higher. It's very difficult to predict who may get very ill due to COVID, including long term COVID. Many of us on the forum have been vaccinated and the side effects have been generally minimal.
  10. Hi Bethany There has been past discussion about this practitioner https://www.dinet.org/forums/topic/27306-anyone-have-experience-with-potscarecom-with-dr-driscoll
  11. I get these when in a flare up. I know it's very disturbing to rest.
  12. it's possible to have a vasovagal reaction to the needle stick IMO. It's a bit like a panic attack I guess (in terms of symptoms). I know when I am in a flare up I am super sensitive to many normally small triggers, such as getting my blood drawn. Vasovagal syncope - Symptoms and causes - Mayo Clinic
  13. Was this the topic? https://www.dinet.org/forums/topic/32130-pots-antibodies-and-immunosupressant-drugs/?tab=comments#comment-288747 So sorry you are so unwell. Is it possible you had COVID? In any case, I have had flare ups that sound really similar to what you are describing. My last flare up I had severe headaches, burning nerve pain all over my body, muscle pain, severe fatigue and weakness, it just felt like everything was going wrong (other symptoms too that were never explained). I had so many tests and everything, everything, looked great. After 6 weeks the symptoms lifted. To this day I question was that all "just POTS" or is there more to it? I have no answers. Relieved it finally went away. But I worry another flare up will return and I have few answers. I do find that IV fluids help and my dr has been great with ordering that when I have flare ups.
  14. I looked on the facebook page. It appears from what I read on there, that some patients are not receiving return e-mails in their inbox bc these messages are going to spam. I would check spam and if no message there, try again to contact them, perhaps by phone or via facebook as well as through their website/e-mail.
  15. There has been a lot of discussion about MCAS on the forum. You might do a search to see if there has been past discussion that may be helpful. Here are a few past discussions that might be informative for you. MCAS-Mast Cell Info - Dysautonomia Discussion - Dysautonomia Information Network (DINET) Me And My Mcas--A New Diagnosis And A Few Questions! - Dysautonomia Discussion - Dysautonomia Information Network (DINET) For Those Interested - I Saw Dr. Afrin And Have A Possible Mcas Diagnosis - Dysautonomia Discussion - Dysautonomia Information Network (DINET)
  16. This is not unusual for dysautonomia patients. Have you looked into MCAS?
  17. I am sorry you have been unable to reach Dr. Blitshteyn, she is an active practitioner. We do maintain a list of specialists, which may be helpful. Physicians - Dysautonomia Information Network (DINET)
  18. Many of us diagnosed with dysautonomia have labile blood pressure. We can't diagnose you obviously here. Good you have some data to work with. Checking bp at home and keeping a record can be helpful too with diagnosis and treatment. Do you have follow up with a specialist?
  19. So sorry. I know EDS can cause a great deal of pain. Frustrating your dr does not understand this and won't refer you to someone who can diagnose you more promptly given your EDS diagnosis. No I never got a diagnosis. I am worried it will flare up again but it's been about 18 months and no recurrence so far.
  20. I'm so sorry you are going so long with such symptoms and no diagnosis. You deserve a doctor willing to be in dialogue with you about your health. That said, it can be difficult to find one and drs do have egos and also get aggravated with patients who question them after internet research. I am assuming you mentioned this diagnosis in your appointments it sounds like your doctors didn't think this was the cause. Is slipping rib syndrome associated with EDS (have you been diagnosed w EDS)? You know your doctor maybe best. I have to say that most doctors I have had probably would not respond well to a youtube video--even if you are on the right track with a diagnosis. Rather than try to diagnose yourself, I would focus on making sure your doctor understands your symptoms and that they are severely interfering with your life. I would get the MRI done. If it does not show anything then they need to refer you to a specialist or inform you of what other testing they intend to do to get to the bottom of this. I have been in very similar situation last year with severe flank pain and hematuria that went on for about a month. It was never diagnosed (and mysteriously went away eventually)--only things were ruled out. And I had some testing that IMO at the time was not likely to be helpful. But drs do want to rule out serious problems. I hope you can get answers and relief soon.
  21. The news is very overwhelming these days. I agree it's best to step away and take it is small "doses"! You can only do what you can do. Absolutely the vaccine is the best way out of this at a population level. I got the Moderna shots in the spring. I had no significant issues with it--just a day of fever and aches. I was afraid of a POTS flare up but I didn't have one. I noticed Pistol mentioned there are many people in the hospital who are fully vaccinated where she is. This is not the case where I am in Maryland, nor in the state as a whole. Unfortunately people who are vaccinated can still get infected. Some do still get very sick but so far this is comparatively rare. In any case, masks and distancing are still important for this reason and bc anyone under 12 is still not eligible to be vaccinated.
  22. I have noticed other members describing a similar symptom over the years. Here is some past discussion that may be helpful. Tight Band Around Throat - Dysautonomia Discussion - Dysautonomia Information Network (DINET) Tightness in throat - anyone else get this? - Dysautonomia Discussion - Dysautonomia Information Network (DINET)
  23. I would not attribute this to POTS. Hope you can be evaluated by your dr.
  24. As others have said this is a common symptom. I definitely struggle with feelings of fear, sense of doom and anxiety when I have a flare up and I know a lot of it is being caused by the condition and not because of it (if that makes sense). Meditation and breathing exercises can be helpful for me. And also understanding that the feeling is rooted in a physiological cause can help a bit. It's hard. Sorry you are going through this.
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