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  3. Hello @bookworm818 - here is what I can share: - I have both low and high BP and use IV fluids for both. For me personally when I run low BP longer than just for a day or so I decrease my meds, that helps. Otherwise what helps generally is increasing salt and fluid intake, getting up slowly from sitting positions, exercises that strengthen your leg muscles ( i.e. standing at and holding onto a counter and switching from standing on tiptoes to heels, or bending at the knees like a Plie in Ballet or lying on your back with a ball between your ankles and raising your straight legs ). Compre
  4. Have they checked your aldosterone?
  5. Hi all! Three things... 1. What are everybody's tips and tricks for low blood pressure? 2. What causes flares for you? I feel like once a flare hits I just have to manage symptoms and ride it out. 3. For those of you that have shortness of breath, what does it feel like, and what helps (if anything)? Mine feels like I can get it a enough air, but it is not satisfying. Idk how else to describe it. Thanks in advance!
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  7. Saw Dr. Vernino today and reviewed test results and symptom history. He acknowledged my case is very unusual from what they normally see. It appears I have been having autonomic dysfunction due to brain neurotransmitter imbalance/damage: a complicated, mixed type of drug withdrawal. I was taking ambien for sleep. Ambien effects GABA receptors. Then I was given 4wks of 2 antibiotics that also happen to interact with GABA as antagonist (block GABA) so I began having more problems sleeping and kept raising ambien dose and even added some alcohol (also interacts with GABA) to get to sleep again.
  8. Saw Dr. Vernino today and we discussed one of my issues since all this autonomic stuff started: Severe insomnia. My sleep doctor had prescribed mirtazapine 7.5mg before bed to help with super bad insomnia. It took a few days to start working and by 1wk was doing ok but not perfect. Still better than anything else I've tried since this all started a few months ago. I could deal with the weight gain and constipation from the medicine but it turns out it was pushing my BP up to 150+ systolic despite being on 2 BP meds to treat whatever is going on (always had normal BP until this began end of Jul
  9. Hello, all! Thank you for the replies and the feedback and thanks to the OP for posting this topic. Here's a quick update. The cardiology appointment went much better than I expected and it even offered a little hope. The cardiologist was attentive and concerned... better yet, he wasn't interested in being over zealous in changing things up just yet. He's scheduled an ECHO and I will be placed on a Holter monitor for two weeks for observation. He hasn't offered an empty promises but he did say, "We have better beta blockers available than what you are currently taking and I really wa
  10. Last week
  11. @Goldfinch-- I have that same thing. My doctor diagnosed me with "POTS without the T". I have no idea if that should be orthostatic intolerance or not, but if people ask, I just tell them that I have dysautonomia.
  12. Be sure to tell your doctor. Autoimmune diseases go hand in hand with dysautonomia. It could be that, but doesn't have to be. I have Rheumatoid-arthritis and Lupus. They call it Undifferentiated Connective Tissue disease or Mixed Connective Tissue disease.
  13. When I am in a flare I have body aches. Sometimes it can really be severe. I think also when I am in a flare I am more sensitive to pain. Does salt and fluid help? Usually that helps me to feel a little better at least.
  14. I get a lot of body aches and have found self massage very helpful I massage for less than a minute maybe a dozen or so times a day, with gentle/firm circular motions. After doing this a week or two, the pains typically greatly improve and need far less massage in the future. I also think NSAIDs help I am not sure if it is from my POTS, or MCAS or something else
  15. Does anyone have excruciating painful body aches and tenderness sometimes? It’s not all the time but it seems like after I sit at a computer or maybe I’m doing too much. I was just wondering if anyone else has this symptom and what relieves it? I’m in real pain and I was doing real well even walking. I see a specialist next month. I’m on a low dose Midodrine and propranolol and normal non pharmaceutical protocol.
  16. I'm pretty sure my grandmother had it, undiagnosed. My mom said she was fatigued a lot, prone to fainting or feeling faint and had no tolerance for heat in her 30s and 40s especially. She had periods in her life where she was lying down during the day, daily. Never diagnosed. For some reason, if it is genetic in my case, my mom was never at all affected. I have 3 sisters but I am the only one with POTS.
  17. Hello @Goldfinch - I am so sorry you are having such a tough time!!! --- Regarding your questions mentioned above: unfortunately the diagnostic criteria for POTS are so narrow ( HR increase of 30 BPM within 10 minutes of standing ) that many doctors will not label you with POTS if they only go by the book. All of your symptoms clearly confirm the possibility of POTS - but you may not display them in the TTT since your HR does not shoot up upon standing. My sister clearly has HPOTS ( high BP, especially diastolic, and all of the typical POTS symptoms ) but she does not have tachycardia. Actuall
  18. Hi. I've posted before as I have been off work and have a load of POTS symptoms, it floored me. I didn't initially realise this but when investigated non POTS specialists said in letters I may have POTS and need a specialist referral (waiting). I was diagnosed with hEDS a few years ago by a geneticist. Also CFS and IBS and OA. I have headaches, sweating, tachycardia on moving, always feel light headed and slightly confused when standing/moving and have always wanted to lie down, visual issues, chest discomfort, cannot tolerate heat. Racing/ pounding heart, nausea, Raynaud's, exercise intoleran
  19. Yes, I also have heard about this however - I personally have never responded as well to oral rehydration products ( not even remotely ) as I do to IV fluids. Anything oral goes right through me and I pee more than I take in, however with IV fluids I do not.
  20. @toomanyproblems - neurasthenia, soldiers heart, weak nerves, according to articles about the history of neuro-cardiogenic syncope it's what they called symptoms of dysautonomia. They also say that in the past women with POTS would baffle the docs and end up completely confined to bed until they ( prematurely ) died. Could you imagine dealing with POTS back then? My mother is 88 and lived with POTS all of her life. She was told endless times that she needed to see a psychiatrist, and every time she did they told her there was nothing wrong with her mind. Cardiologists would tell her that
  21. IIRC POTS was not recognized officially until 1993 or so. You KNOW people had it before then. I've often wondered what they called it.
  22. I saw this - wow, is that interesting. I have never found any kind of oral rehydration to work very well, but IV fluids are magical.
  23. Hi. Many people with various forms of dysautonomia have a reaction to alcohol and/or caffeine. I am not sure that having a reaction would be informative toward a diagnosis.
  24. You know - I have wondered the same. Up until a few years ago there was such a thing as "post-viral malaise" - maybe that is considered dysautonomia now?
  25. Yes, the neurologist even mentioned barometric pressure, although saying that the allergies aren't the reason for the POTS flare. I've since noticed that the severity of the "flooding" in my head on any given morning, doesn't necessarily determine how I'm going to feel that whole day. The other side to it though, is that I'm often nauseous for large chunks of the day this time of year, but then I'm starving for about an hour or two when it finally passes. So that's when all the eating happens. It's also difficult for me to eat smaller throughout the day while I'm working. I know th
  26. I was thinking this too after reading an article this weekend. Although I do wonder if post viral POTS is already far more common than the medical establishment realizes.
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