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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 does it and seeing how much out of pocket. To try it on me, if they legally could.
  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 this guy. That didn’t know crap about pots and wanted me to go threw with a ep study. I said I’m going to a dysautnomia speachlist first. Witch I did and had a ttt that confirmed pots, and the Nero said I didn’t need a ablation or a ep study I have pots, witch I believe to be the problem, but all these cardiologist iv seen counting one in the e,r witch makes three total say I need it done to rule other things out. But when I say how come it’s only when I’m standing they got no good answers. Another thing iv heard out of them do you exercise are you sure you’re not Deconditioned. witch makes me want to snap. When this started I was working for a Commercial construction company, building 6 story 55thousand barrel whisky warehouses. witch it’s all built out of huge green lumber I was packing lumber that weighed over 100 pounds climbing swinging 10 pound sling hammers pack out stacks and stacks of walk boards that Weighed around 200 pounds one guy on each end these would last three days, every last Thing about it was heavy and hard physical work, also all the flights of steps to get up and down the building. So I was working out hardcore ever d*** day, and just keep getting worse and worse my heart would beat in my throat all day, i was literally telling my self pick your feet up In my hand I stopped talking as I work as I needed the extra air, I finally got to were walking up the steps was all I could do. So forgive me but I know exercise ain’t the fix, if it was I wouldn’t be here typing this. I just want scream like exercise is a cure and we’re just to lazy to do it. Lol but back to my point have you had a ep study? We’re you ever told you needed one? Did you end up with a ablation? are you better or worse now? I’m not scared of the procedure I’m scared I may end up worse then I em, witch I cannot afford to do as I’m pretty d*** near useless as it is. But at the same time I’m desperate to get better,
  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 bloated so it’s just not worth it. It’s also important to move around. Read up on stomach meds before taking anything as they have some nasty scary side effects that can happen. Also no alcohol not even one beer, it also makes things stop. I sure miss be able to have a few beers. But just not worth it.
  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 hours of high heart rate. One thing I do know is I’m getting worse not better, lol all I know is it is what it is, but I’d sure like to know What that is is. Lol
  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 to feeling sick everyday, me getting worse was slowly happening by the time I got were I’m at, it was to late.
  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 seen in 160 for couple hours at a time, Manual labored trades is all I knew so I took the it won’t kill you saying to heart, and just push on and let me heart beat as fast as it wanted. I wish I could go back and not have did that lol, heart disease also runs on my dads side, h*** he just had bypass surgery last Monday, I’ll find out something hopefully,
  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 meds, no anxiety with it, When it’s come on eating, talking, seem like hard task. It’s one symptom that about to get on my last d*** nerve. Had it for a week straight now today I can breath better. Here the wierd part is seems to be bad for couple days after iv had a orgasm, even if I do that very quickly, comes on a with in a hour after that, comes every time following that not to mention other symptoms get worse, can anyone relate and what is the cause?
  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 problem why go to heart doctors for it. A electrophysiologist is a heart doctor that specializes In the electrical pathways of the heart. Not what are issues are, not saying you won’t run into some. that are also knowledgeable about dysautonomia, but I do know you can run into those that are not. Not going have that chance with a dysautonomia specialist.
  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 also seen on heart monitors, I was referred to the EP Doctor Who wanted to do an ablation. But I had been diagnosed with dysautonomia at 15, I thought with all the other weird symptoms that was going on. The SVT attacks were some how my Central nervous system causing them. Didn’t have them intel now, I was hallucinating at times for gods sake, what was so hard to believe my own brain could make svt attacks happen, Of course that doctor thought I was crazy with such a suggestion. was having all kinds of crazy muscles spasms all day long threw different muscles, stomach would quit working for days, then bad stomach pains, I would be falling asleep and see Hallucinations in my house sometime after waking up, I knew they wasnt there, would go Away with light on, never happened in full light, numbness in body that seemed to be random, Servere brain fog, feeling of surrounding around me being a dream. It gets better hang in there, I’m still no we’re near being normal but glad to be better than I was. I’m on no medicines everything I was given made me feel worse, I still get chest pains, but I don’t pay them any attention anymore, I almost went threw with a ablation do to pear pressure from doctor and family telling me I needed it because a doctor said so. I went there for the appointment to have it done, they were actually in the process of prepping me. When I thought I know my body screw anyone that thinks other wise. this is all connected I know it is. I told them I was leaving, guess what the wierd stuff eased up, the svt also went away witch I would have daily. I still have pots but no svt atacks. I’m not trying to tell anyone what to do, but I believe we should all try the life style change first including diet and time the biggest one being time, before. Medicine as everything I tryed set me back farther. When you’re On medication you don’t know if its new symptoms from pots or medications, Again I’m far from normal but so much better then I was, that I have hope for a future being a little better. Good luck and know there other people that. Are also ridding this roller coaster, that we don’t know were it ends. But we have been on it long enough that that scary down hills and the loops it goes threw, become normal to us. With that comes no fear or anxiety or anticipation of them happening. Stay strong it’s the only choice you have to get better.
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