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Everything posted by Hutch

  1. Call your insurance company and ask there should be a 1800 number on your card.
  2. Did you have lots of bed rest from recovery from your surgery? They say that can cause pots, also depending what drugs you went under, for surgery can miss up the nervous system. People can end up with pots after surgery. Seems you have a lot of possible things that could have triggered it.
  3. Enhanced external counter pulsation therapy (EECP) if you haven’t seen it google it, I believe it could help with pots symptoms. As I was trying see if it has been studyed on pots syndrome, only thing I came across was a small 6 person study for orthostatic intolerance, two people had pots. all 6 people had good results from it. It helps the heart release a hormone that promotes. The growth of new blood vessels in the heart, it also pushes blood to the brain and other organs. Does anyone know if this has been study in larger groups of pots patients? I’m thinking about locating someone. who do
  4. a hospital I was imminent in that my original ep doctor worked for ordered a 30 day halter monitor, and the original ep doctor had not even checked it, and still wanted to do a ep study. Iv noticed since getting insurance places seem test happy, But I really feel sure a ep study is a unnecessary for me, but I swear the impression these cardiologist give is pots is a mild issue so must be something else going on. But I know that’s not true.
  5. That’s the only way. If your going threw with a ep study, there already in there, so if they found something that needed ablation you’re locked in at that point.
  6. Google ep study they thread a catheter up a leg Vain into your heart, check to see if you have a extra electrical pathway in your heart, if you do they burn it out. You Contradicted you’re self you first said if they keep suggesting it I’d go for it, then toward the end said I personally would shy away from the procedure lol thinking about just flipping a coin
  7. Yes that’s what a ep study is. I am for sure leery of doctors and test as, when you have good health insurance, at the end of the day that’s how they pay there bills, there is people that didn’t have pots but end up with it after a ablation, but I don’t have that worry tho lol I had dysautnomia issues since 15 I’m now 27 that’s Why I’m Leery of it I have so many other wierd symptoms that are there when heart rate and blood pressure are perfect, so I know I have other problems.
  8. So I just seen a new cardiologist today, do to chest pain and shortness of breath. He is aware of pots. I told him about how high my heart rate gets, for instense if I’m sitting a while and get up to pee. it gets 160 if I stand long enough it’s comes down to 130/120 if I take a shower I sit in the shower but when I stand to get out heart rate a lot of times is 190, slowly comes down to 120 140 just depends on its moon seems like. If i sit it comes down fast. To around 95 longer I sit the lower is can get. Well he wants to send me a ep guy to get a ep study. Iv seen one ep cardiologist before t
  9. I feel sick 24/7 some days worse then others even When heart rate and blood pressure are good. It’s because it’s all autoimmune related it’s are own immune system making use feel sick, the heart rate and blood pressure are just symptoms, but if they get for enough out of normal rage they cause symptoms related to them. There’s some good research backing this. How else do you explain the feeling like crap even when your numbers are good and your lying down. I personally think it throws the starving the brain for blood theory out the window,
  10. My stomach was really missed up in the beginning when pots hit me, was going a week without a number 2 I took some medicine to clear me out, then went about a month drinking two ensue drinks and eating just a small piece of chicken plain and I mean small a day, I wasn’t even getting hungry anymore. But I started drinking decaf coffee two cups in the morning, it started getting things moving, to the point I can eat better and take a number two once a day sometimes once every two days. I don’t eat any red meats now and don’t eat any breads, I use to be able to eat anything but now I get easily b
  11. What do pvc feel like? Do they cause a wierd crawling flip flop sensation in the chest? I was getting a wierd sensation coming from my chest some days and it would drive me nuts,
  12. Have a appointment this coming Monday with a cardiologist that was made three months ago. I hope to get a full work up on my heart. If that checks out i believe it’s related to dysautonomia,
  13. I eat table salt straight and drink nothing but water, 4 to 6 bottles of water a day, not counting one Gatorade I drink when I wake up. I do all I can to feel better but my body just won’t get on board with it. Have you ever tryed oxygen with the shortness off breath? I’m curious if it would relieve the feeling. If it does wouldn’t that mean clearly we’re not getting enough oxygen?
  14. I feel strange while laying down to go to sleep wierd sensation in chest I wonder if I could be having some kind of arrhythmia or stomach problem. For past week I wake up feeling drugged a odd feeling num like and short of breath. I been thinking about going to the hospital, but with all the flu in ky right now. I don’t think it’s worth the chance. Just to get blown off by e.r doctors. I never know when I’m sick making me feel worse or if it’s dysautonomia. so holding out for this cardiologist, I like be sure it’s not heart related. My pots symptom never takes a break. So my heart has seen hou
  15. No but use to drive a company van with 10 other guys who were chain smokers 4 hours a day, two hours to work and two hours home, it was like driving a bar on wheels lol that’s all the smoking I ever did was second hand. I also had mechanic shop at home so was around fumes that come with that i also. Bought and fixed wrecked cars, witch auto paint is a neurotoxin but I always wore a respirator, but since getting in bad, shape I wish I could go back and not missed with that either, it still sokes in you skin and gets in your blood stream, I was diagnosed with dysautonomia at 15 so I was so use
  16. When it first started, I went to my family doctor, she didn’t seem concerned about it, but when at doctor office, my oxygen level was reading higher 97 percent, but I’m going set a appointment up tomorrow, it comes on every time I try to do anything, iv noticed the higher my heart rate the lower my oxygen seems to be, but haven’t seen it drop below 92 percent and still feel it when at 97 percent so I don’t know, but it for sure comes with being up right and very little activity, I’m starting to wonder how well my heart is pumping, I work with my heart rate always 120 or above for about 4 years
  17. I’ve been having this suffocation feeling that use to come and go, now it lasting longer Worse with laying flat down. It’s not like the out of breath from say running. But like I’m breathing fine, but my body feels like I’m holding my breath. I have good blood oxygen saturation levels usely 93 percent. I also have pressure sensation in chest feels like I’m standing in a swimming pool of water above my chest. Witch is also worse when laying down. Have a cardiologist appointment next month. Witch I made three months ago. I hope to get some answers then. But it seems to keep getting worse. On no
  18. Thank you.. I can’t believe as many times iv looked I couldn’t figure it out. lol
  19. I agree. Also is it possible to make a new post from a cell phone? I can reply on mine. but can’t figure how to make a new post on cell phone but can on a computer.
  20. I cringe everytime I read someone recommending findin a ep doctor. I can understand if they recommend one they had luck with personally. Witch is what it is luck. Theres pots patients with ablations they didn’t need. Witch in turn makes them worse. No reversing that once it’s done it’s done. I’m far from well but I’m better then I was, thanks to the specialist. But as we all know there only so much they can do. After that it’s hope are body’s come around.
  21. I fall into that category he’s referring to, as beta blockers make me so much worse. With that said do you have a diagnosis of pots from another doctor? If so a family doctor could write you a prescription on a beta blocker to try. Family doctors are usually pretty easy to deal with. If you have a diagnosis from a specialist on file. Propranolol Is usely the go to first choice to try, low dose of 10mg three times a day is usually starting point.
  22. I was sent to a electroplysiologist a well known one in my area. When I brought up I’m sure I have pots. He wouldn’t even here me out, said if I did I’d be passing out everytime I stand up lol only 30 percent of people pass out who have pots. wanted me to go threw with a e.p study, said if that didn’t show anything maybe we could look into a tilt table test. I laughed yea let’s do an invasive procedure First. I had already had appointment sent up with a nuro that specializes in dysautonomia , that following month. told him I’ll see what he says, will he confirm pots from ttt. It’s not a heart
  23. I would look for a neurologist that deals with dysautonomia in your area not a cardiologist. They can prescribe meds needed to help,
  24. In the beginning I did. It was usely at night after I was wore down. Weird stuff got worse the longer I was awake or pushed my body . You will have all kinds wired symptoms I’n the beginning I did. It took me 7 months to get Better. From alot of the wierd symptoms, those kind that make you feel crazy lol, when it started I woke up one morning feeling crazy amounT of anxiety like I knew the world was ending or something. I’ve never had an Anxiety in my life. It was weird it would ease up after being awake a while then I started having SVT attacks witch I went to the hospital for. They were a
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