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ByteMe58

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Everything posted by ByteMe58

  1. During my initial hospital stay, a doctor in Smithtown NY admitted me for 22 days of tests before confirming POTS on a tilt table test with a heart rate of 180 bpm and a phone call to Dr. Grubb. He started me on all the meds including Paxil 20mg a day. Unfortunately he doesn't accept my health insurance so after first office visit he tells me to switch to his partner. His partner doesn't believe I have POTS, he thinks it is psychological and has me return to the hospital for another tilt test where he tortures me for 20 minutes of **** at 170 bpm, sweating, shaking, feet burning from blood pooling, you know - the works. Then he refuses to sign my disability paperwork because I must have anxiety problems, my wife pleads with him to call Dr. Grubb to confirm my case. He has his nurse call me an hour later apologizing for misdiagnosing me after speaking with Dr. Grubb, apparently this doctor I switched to didn't know what POTS is, and they sign my disability paperwork and send it right in. Now 2 weeks later the Paxil prescription is running out, so I call their office and they get back to me in a day or two and say you don't need that and they don't renew it. Now what kind of doctor has you stop paxil cold turkey after 5 months of 20mg a day? Ever heard of withdrawals doc? Over the next 4 days, I ended up with nightmares, night sweats, crawling on the floor screaming for my wife to help me to bed, extreme vertigo when moving my eyes to the side, headaches, and I swear I've heard voices at night, and the feeling that I'm getting worse and can't go through this again. I'm not saying suicidal, but no will to go on like this. The Moral here: Don't trust a guy just because he's wearing a white jacket with a pencil in the top pocket. Frank
  2. There aren't enough pats to go around. Today after riding the isokinetic bike in bed for 25 minutes to get my blood flowing, I was able to sit and stand for a total of 18 minutes, a new record for me. My heart rate had gone from 55 laying down (on meds) to 102 by that point and although I wanted to hit 20 minutes, I just couldn't do it. I spoke to my parents (Florida) and told them the good news, the last time I was only up for 10 minutes. They told me they are proud of me, that felt good. Imagine that, I'm 51 years old and my mom says she's proud of me, life is good. My mom told me that my dad is always sad/depressed when he thinks about my condition, but when he talks to me and I tell him how I'm trying to get better all the time, I actually cheer him up and mom says he is happier when he hangs up the phone. We have 2 choices, lay around and sulk, or stay positive and keep trying, and only one of those things will make us better. Frank
  3. I've had the itchy, burning feet feeling during my tilt test, and even if i stand still too long, like brushing my teeth then shaving. If I don't keep my feet moving, i get blood pooling in my lower legs and feet. This may be what is happening to you. I can see the color change in my feet and even the veins balooning up over the surface. You mentioned it went away after walking, so that could be it. You could try marching in place or even just pumping the calf muscles to get the blood flowing and see if that helps. Frank
  4. I can't wait to get to the point where I can do something. When I was in the hospital, I could only get a minute out of bed without the symptoms coming on. Then they started me on meds and I was up to about 5 minutes. Now with exercising on the isokinetic bike and meds at home for 5 months I'm up to 10 minutes. I spend the rest of my day like this..... Wake up at 8 for first round of meds and breakfast eaten while laying in bed. Some light reading until my eyes get blurry, Exercise with bike in bed and straps to work upper body. I sweat so much that after exercising that my wife gives me a bath. Back to hospital bed until about 3, then into the recliner in the living room. More pills at 4. I try to stay there until about 8 or 9 each night watching TV with my wife. More pills at 8. Then it's back to bed to read and relax until about midnight. Last batch of pills and sleeping pill at 12. Yesterday I sold my truck, I won't be driviing for about 5 years, so I let that go. I loved that truck, a Dodge Ram 2500 with a V10 motor, raised up and big tires. 800 watt stereo with woofers and great 4 wheel driving at the beach. But now I have a wheel chair that lays back so when I do leave the house (to got to doctors) I can lay down in the waiting room. But tonight I told my wife that I am happy where I am, I am going to continue getting better over time and we have each other. I have 2 dogs that LOVE having me home all the time and my wife is my best friend. I consider myself lucky. Frank
  5. My wife tells everyone she knew something was starting to go wrong with me just before POTS really kicked in. I usually have a great memory, in fact in 9th grade (37 years ago) I memorized pi to 42 digits from a newspaper article and can still recite it today, 3.141592653589793..... But our neighborhood recylces on alternating Wednesdays, 1 week it's paper, the next week it's plastic bottles. So she calls me at work one morning and says why did you put the bottles out, and I say oh crap, don't tell me it's paper day, she says "No, it's Tuesday" Here's one for you. A guy goes to the doctor. The doctor says I found 2 things wrong with you. You have the Flu and you have Alzheimers. The guy says, well at least I don't have the Flu. Frank
  6. Mirry, I purchased an isokinetic exercise bike online to simulate bike riding while laying down. It can be used in bed or while laying on the floor. It can also be used while sitting, although I haven't gotten that far yet. You can really get a good workout this way. Sure it wears me out, and I do feel sore later in the day, but it's worth it. It's under $100 http://www.isokineticsinc.com/category/chair/product/mpe1g There are other sites that sell this thing and there are other styles available. Frank
  7. I was diagnosed on a tilt table with a heart rate of 180bpm. I had many issues while elevated, from blurry eyes, sweating, tremours, lower leg pooling and pain, and eventually extreme head pain and stuttering before they stopped the test at 6 minutes. Now 3 months later this cardi wants to repeat the test to check on meds. I told him I am able to sit/stand for 10 minutes now instead of 5 and am able to ride the isokinetic bike for 40 minutes. Doing as much exercise as possible. I've been out on disability since hospital stay in Sept. I lay down with a heart rate of 68 to 72, when i stand, i immediately hit 108 and it steadliy climbs. I have a few minutes where I can get to the bathroom, or to the recliner in the living room before losing sight. My wife bathes me and does everything else for me. My problem is the tilt test isn't much fun. Do they really have to strap me to a board and put me through **** again until i black out after just 3 months of meds. isn't this supposed to be long term help, no cure. Frank
  8. lieze, good for you, my wife has been giving me baths since I got out of the hospital in October. I can only be in there for about 5 minutes before I black out, so we have to move fast. But I remember the 22 days in the hospital with no bath, and I feel lucky now. Looking forward taking a bath by myself, or let's get crazy now, a shower. Frank
  9. not, Dr. Grubb is great. I first started feeling effect of POTS last summer, I was taken to the hospital after blacking out at work in September. I spent 22 days there getting tested, misdiagnosed, doubted and quetioned about my sickness. Luckily a doctor there did some internet research and contacted Dr. Grubb who had them perform a tilt table test. After hitting 180 beats per minute on the table, it was finally confirmed. I have been almost completely bedridden with this, not being able to stand or sit for more than 5 minutes. I was able to get an appointment with Dr. Grubb in late November. I had to rent a compact RV with a bed for me to lay down in just to get to him from Long Island NY. He is very knowledgable about POTS, He spent about 3 hours talking with my wife and I. He explained the history of the problem and asked about all my symptoms. When I told him I had questions for him, he said I'll answer them. I said I have 3 pages, he said I'll answer them. And he did. Every one. How far do you have to go to get there? How are you traveling? Are you staying at the Hilton, he gets a big discount there. Be prepared, write down everything you want to tell him and everything you want to ask him. He will probably want a follow up in 6 months, so don't forget anything. Mainly, don't worry about seeing him, relax and be yourself. The worst is over, you are going to start getting better now. Frank
  10. I had a physical therapist that tought me to breathe like this In through the nose slowly, while she said smell the roses Out through the mouth hard, while she said blow out the candles Well, I started to feel like I was passing out anyway, I had to lay back down, she said what happened and told her I think I smelt candles Frank
  11. While in the hospital, I had this dream or a similar one a lot. I had this nightmare that I couldn't walk, I was crawling on my front lawn trying to get to my door. As I crawling the door kept getting further away. If I stood up to walk to the door, I would pass out and fall down. Once down on the ground I would crawl and the door would keep getting further away again. Very vivid where I could tell what cars were in the driveway, and which neighbors saw me crawling. Woke up sweating and shaking, thinking, I have to be able to walk to get home. Frank
  12. Detrick7, Yes I still take Paxil, 20 mg daily. You think that could cause the vivid dreams and intense nightmares? Frank
  13. Before getting POTS, I didn't even remember my dreams. Now I have nightmares. I mean real bad. And I remember them vividly when I wake up. Most involve me not being able to walk or having some kind of handicap like being blind. I won't bore you with any of mine (yet). Anyone have any they'd like to share? Frank
  14. A list of symptoms would help. It's not just dizzy or passing out. Don't forget things like numbness in the lower extremeties. sweating, eating disorders, tinlging on the top of the head while standing, difficulty seeing and hearing, and headaches. Take your shoes off and look for swelling of the veins in your feet while standing. Pooling in the hands and feet in the first few minutes may help the doctor to believe. INSIST on a diagnosis, don't settle for anxiety, mid-life crisis, or what a cardiologist told me "why don't you just buy a sports car like everyone else?". Good Luck Frank
  15. I had the Tilt Table Test during a 22 day stay in the hospital. I was on a beta blocker (lopressor), Paxil and Midodrine. I was also wearing compression stockings. They said the test would run for 10 minutes and they were looking for an increase of 30 beats per minute or 120 bpm at any time during the test to confirm POTS. They strapped me to the hospital bed, inserted an IV, hooked up 2 blood pressure monitors (1 runs automatic, the other whenever they wanted to check) and the cluster of stick on monitors on my chest. Before the test my heart rate was about 62, which was low due to the meds. They put the table straight up to 90 degrees and the doctor stood right in front of me asking me to tell him how I felt. Almost immediately, I saw black spots and blurry vision, then my hearing started to become affected. My head started to hurt after about 1 minute. I asked the doctor if my hands were turning red, and he said don't worry about your hands, tell me how you feel. By then my legs were shaking and I was sweating, he told me to stop my leg from shaking and I couldn't. I said "I..I..ca-ca-can't" I couldn't even talk without stuttering. I could feel my eyes closing and my head dropping as I was passing out, he kept saying, keep your eyes open and look at me. That happened 2 or 3 times. He asked about my headache which was worse but bearable. When I told him my head hurt a lot, he said, put him down, I said "NO, finish". He said put him down, he's done. When I got back down and things started returning to normal, I said you should have finished the test, he said I didn't have to, your heart rate was over 180 bpm in 6 minutes. You have POTS.
  16. It happens to me whenever I stand up. My hands and feet turn red and almost purple with white spots. The doctors say it's from blood pooling. The veins also swell up in my wrist and around my ankles. If I raise one hand over my head for 5 seconds, it goes back to white. Put the two hands together and you'd swear it was two different people. Of course the problem is not that the blood is building up in your hands and feet, the problem is you are losing blood and therefore oxygen to your brain.
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