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About HangingByAThread

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  1. That's great. From what I understand, there will be separate training sessions going on for medical professionals.
  2. My whole life has changed but I try to remain positive. The only real date nights my husband and I have had in the last 6 years or so were the times that he drove me to the Cleveland Clinic or Vanderbilt or Johns Hopkins and we had to book hotels to stay for several days of testing (I can't fly - get sick for 2-3 days after). Instead of being depressed about things, I tried to find something fun I could handle for a bit in each place and pretend I was on a vacation. For instance, we went to the Rock & Roll Hall of Fame and saw the Christmas Story Movie House & Museum in Cleveland.
  3. I had an EMG on both legs some months back and it was completely negative, which really surprised me. I had been complaining for years about odd sensations in my legs, muscle spasms in all different areas that come and go and involuntary leg movements (like my whole left leg used to just jerk and actually lift off the bed when I would lay down on my back). For the last week I have an EXTREME twitch in my right eye (everyone can see it - it comes and goes but it seems that whenever I sneeze that starts it up as well) as well as a muscle twitch in my left arm, not far from my elbow (you could
  4. Yes!!! I notice this more after a huge meal or after a lot of carbs but at work I eat the same things for lunch every day and I can go for days without this happening and then I might have this happen 3-4 days in a row. I find that standing up helps when the palpitations are extremely bad (I have PACs and PVCs) and I do notice that standing up after eating makes me VERY lightheaded so I have to be extra careful at work after my lunch (and pop extra salt). I also notice that when this is really bad, I'm generally having other symptoms as well (I have daily symptoms but there are just cluster
  5. I've asked about a pacemaker but have been told no. I take Methyldopa but only in the morning (so that it doesn't worsen the night time bradycardia - in addition to the bradycardia, I often have horrible tachycardia 30-45 minutes after falling asleep...…….so my body is all over the place). I've been on countless monitors and once the monitoring company even called me at 5:00 a.m. to alert me (The call went like this "Hello, I'm sorry to wake you up so early. Can you tell me, what exactly were you doing?" to which I said "I was sleeping" and they said "you need to call your cardiologist imme
  6. I'm excited to go - hope I can learn some tips and meet some others (I've never met anyone else who has this) but, at the same time, hoping I have the stamina to sit through it all (it is 2 days 9-4 or 5). I think the real highlight for me will be walking in with a dress and my compression stockings and for once in my life not having people stare at my legs!!
  7. My husband is driving me to the annual conference this weekend. Is there anyone else on this board that is also attending?
  8. I have pots (hyper) and pretty bad bradycardia when I sleep (23 beats a minute - takes me a good hour or more to get out of the bed in the morning because I have to hydrate and down 4 grams of salt to get my blood pressure up). There have been other times where I feel everything slowing down and I can just fall asleep on my feet - so I think it is bradycardia - and then that will be followed by tachycardia.
  9. My doctor instructed me to never lie flat - keep the top of the bed inclined by about 6 inches - SOUND CRAZY BUT HELPS A LOT!
  10. ALL the neurological problems you described your daughters having (other than the seizures) sound exactly like what I experienced BEFORE I was put on a low-dose of Methyldopa by Vanderbilt. If nothing else helps, you might want to mention this to your doctor. It works by stimulating the brain to decrease the activity of the sympathetic nervous system. Before a full workup by (several) specialists, I really thought I had something like Parkinsons or MS due to my odd neurological symptoms but it turned out I was hyperadrenergic. I also have the tendency to have low blood pressure but I just
  11. Is anyone going this year? It is July 26-28 in Philadelphia. I've never attended one but am thinking of going. The list of speakers looks interesting. https://www.dysautonomiainternational.org/page.php?ID=205
  12. Just offering my two cents............does she mainly use non-stick pans? Wondering if it could be something in the coating that is bothering you. Also, what about food allergies? I have food allergies and can't be around my mother when she's cooking shellfish and can't be around others eating peanuts. Could something like this be contributing to your feeling ill?
  13. Hello everyone. I was hoping you could give me some tips regarding an upcoming trip to Disney with my family this summer. I went once before - about 5 years ago - (that was before my Hyper-P.O.T.S. diagnosis) and it was pretty awful with me spending a lot of time sitting on the ground or lying flat on the carpet inside of an air-conditioned gift shop while my family waited on line or rode the rides. I’ve since gotten a handle on the day-to-day things and wear full-length compression hose, take tons of salt, and am on Methyldopa, I carry cold water, ice, do the cold towel around the neck, et
  14. I have the hyper form as well and totally understand how you feel. I was treated by the Vanderbilt Autonomic Dysfunction Center in Nashville and for this subtype they recommend: "Central sympatholytics, such as clonidine (Catapres) and methyldopa (Aldomet), act on the brain to decrease sympathetic nervous system tone. Because of this, these drugs are most beneficial at stabilizing heart rate and blood pressure in patients with central hyperadrenergic POTS" I was put on low-dose methyldopa (it is the only medicine that I take) and it was a god-send!!!! It seems counterproductive be
  15. I don't blame you for being upset. I get the "you must be having a panic attack" comment all the time as well - from first responders and in the hospital. I found what really helps is to record my episodes/EKG on my iPhone (I use AliveCor) and then bring that with me. I tell them that my electrophysiologist prescribed the device and then it usually turns into a show and tell session and they sort of start taking me seriously. So sorry you had to go through this. I hope you are feeling better.
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