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Everything posted by Mike

  1. I feel the same way! Don't have any advice though.
  2. CONGRADULATINGS!!! So happy for you!!!
  3. I agree and understand there's little known about our conditions. There are just many things that get frustrating. I'm sure we all feel that way at times. Poncha, you brought up Lyme, I've had some doctors gladly test for it and I've had other doctors tell me they don't believe Lyme exists. The thing that frustrates me the most is I feel this is the last doctor I can see, I don't know where to go next and I don't want to give up. I'm excited because I haven't seen a doctor with this specific specialty so I was hoping for something different, like tests or medications, cause I haven't responded to anything so far. Katybug that is awesome that your PCP has been able to recognize and help others after learning from you! Natops you couldn't be more right that there are sites like this that we can come together and share information to help each other. I've been dealing with NCS for 14 years and only found this site last year. The people here are great and helpful, wish I would have found this site long ago.
  4. Thanks! I have had a couple tilt tests before and even the blood volume test, the cardiologist ordered. Hopefully the autonomic neurologist will order some of those other ones mentioned. I feel like every doctor I see orders a couple tests and passes me on to another doctor, and I'm running out of doctors to see. Haven't seen an autonomic neurologist yet though. Thanks again for the responses
  5. I'm going to see an Autonomic Neurologist at the Cleveland Clinic next month. I'm sure we've all seen a Cardiologist before, but I'm just wondering if anyone has seen an Autonomic Neurologist before. What the experience was like, any tests they might have done, maybe some questions I should ask. I've seen a Cardiologist at the Cleveland Clinic before, he's the one that referred me, I've also seen a Neurologist in my home town before but he wasn't an Autonomic Neurologist and said he couldn't really help me. Thanks!
  6. After my first tilt test it took me about 10 days to recover, and I was feeling awful for those 10 days. During that test I did pass out and have a 16 second pause in my heart beat. The second tilt test was much better, but they caught my blood pressure dropping and aborted the test before I went out, that time took about a day and a half to recover. Sorry you're not feeling good. Hope you recover soon!
  7. Have you tried watching your diet for any trigger foods and cutting them out? Maybe certain foods make the bile worse. Or maybe a dietitian, if they know about bile reflux at all.
  8. I have Barrett's Esophagus caused by I believe acid reflux, I'm not sure if there's a difference between bile and acid reflux. I used over the counter stuff for awhile before going to the Dr and none of them worked. I use Pantoprazole now and it works great, there was one or two more I used before but had to switch because of insurance and cost, all the prescription stuff has worked well though. If you haven't already see your doctor, also ask if an endoscopy would help. I had one and that's how they determined I have Barrett's Esophagus, they told me my entire esophagus liner was gone and my stomach liner grew in its place, which is thiner and weaker they told me. They also have to recheck me every few years. I don't know if that could happen to you cause I'm not a doctor haha, I just never thought acid reflux could turn into something more serious so it's best not to wait.
  9. When I first started taking salt tablets I dissolved them in water, it made it taste horrible to me but it worked. I just kept at trying to swallow them and now I can, I ALWAYS eat something no matter how little with it to help avoid any upset stomach.
  10. Oh man, the Thermoregulatory Sweat Test sounds much worse than the QSART! I have a horrible heat intolerance, thank goodness they didn't give me that one lol. Some good advise I can give is to have good communication with the doctors/nurses that are giving the tests. Don't be afraid to speak up, I had to tell the nurses I wasn't feeling well and was getting worse fast, they had to abort a test and try again after relaxing a bit, one I bailed on completely (it wasn't the tests that caused my symptoms, I was already feeling horrible). Now that's far from ideal cause you want all the info you can get, but our bodies can only take so much, if you're not doing good fight it as long as you can, but listen to your body. Having someone drive you is a GREAT idea. Ask if you can do the relaxation technique class earlier, tell them you're having some anxiety or stress with all this and you think it would help. You might get surprised, the worse is they say no.
  11. Hello and welcome! I felt the same way when I went to the Cleveland Clinic, it's really not as bad as it sounds, at least it wasn't for me. Oh and the sweat test, I believe that's another name for the QSART test I took and it was the easiest test ever. Find something or someway to stay relaxed and calm, no one likes stress. Good luck
  12. NCIS LA and The Americans are my two favorite shows, I've seen every episode of both shows. Also Modern Family and The Big Bang Theory are great.
  13. I haven't had that exact experience but most times when I'm not feeling well trying to sleep can make me worse. Actually usually all sleep makes me worse now that I think of it. No matter how I'm feeling, even if I'm doing great, every morning is a struggle for me. Hope it doesn't happen again for you!
  14. I don't have a quick fix for you but have you ever had your vitamin levels checked? My vitamin D3 levels were really low and after taking a vitamin pill every day it helped with my energy a bit. Hope you're feeling good enough to make it to your class!
  15. Targs66 I was told it helps with blood circulation. I thought the same thing when told to raise the head of my bed, I thought it would make me worse, but it didn't, it helped a little bit. I still don't understand the science behind it though.
  16. I tried jogging in place playing on the Nintendo Wii Fit, it gave my symptoms as if I were actually jogging. If you're able to build yourself up I wouldn't see why this wouldn't work. For me after playing on the Wii for some time I ended up lying in bed for hours, I just didn't have the strength to keep doing it, I gave up, but hope to try again eventually.
  17. I have noticed I have troubles when trying to speak really loud. If there's music playing or the tv is turned up to loud and I'm trying to talk with someone and having to raise my voice, I can't for long without getting some symptoms.
  18. I have had a seizure like episode a few times. I was told it wasn't a true seizure but that it was "seizure like" by my doctors. Only happened when I fully passed out.
  19. bethanyh that sounds so much like me. Sunshinegirl thanks for the advise, I'll look into breathing meditation.
  20. Weird I know. This first starting happening years ago, after walking for a few minutes with my mind wandering thinking about whatever, I would all of a sudden take a huge breath as if I had been holding my breath. This was well before I ever heard of NCS or any type of dysautonomia. I would tell my mother and doctors and always heard the "it's all in your head" or "you don't think about breathing, you just do it." It wasn't really a problem back then, I would slow my walking down, concentrate on breathing, and I was fine. I went years without bringing it up to anyone again because I was tired of no one believing me. Now it seems to be a huge problem, but not when walking, now it's when I wake up in the morning. About every morning I wake up, I don't feel good so I end up lying in bed for about an hour before actually getting out of bed. When I'm lying there, I can't tell if I'm dozing off or passing out, and I keep waking back up short of breath and doing the gasping for air thing, and it always results in a bad headache. I had a sleep apnea test in 2010, and two done in 2013 along with a narcolepsy test. Everything said I was fine. I know it's not just in my head, I'm sure most of us here have heard that before, and I know the people here believe and understand what dysautonomia patients go through. Has anyone ever experienced something even similar to this?
  21. I'm on Metoprolol also and my BP is usually around 130/95 when on the high side but it fluctuates so much. My PCP isn't extremely worried but we keep an eye on it. I was told to increase my salt up to 5-7 grams a day, I have been meaning to ask a doctor that is knowable about NCS or Dysautonomia if the benefit or all that salt is worth the health risk, or if there really is a health risk in the long run consuming that much salt. But like corina said, check with your doctor.
  22. I have had several times when watching TV or on a computer I get vertigo and if I try to stick it out and keep going I'll start to get nauseous. I haven't found a fix mainly because it doesn't happen often. You could try adjusting the screen resolution, maybe making things appear larger and less sharp, worth a try. Congrats on winning the laptop!
  23. I don't have POTS but I have NCS, I have had a syncope episode while sitting. The first time was before I knew I had NCS, it was a long day of not feeling well and was taken to the ER, while sitting in a wheelchair in the waiting room I passed out. The second time was a very close call, it was during one of my tests, they were monitoring me and they laid me down when my blood pressure started to drop. I've also had many close calls just sitting around the house, I often keep my feet up on a rest or recliner, I can't sit in a normal sitting position for very long.
  24. I do very often. Usually on the upper half of my body. I also get it randomly throughout the day also, a lot of times people will ask me if I scratched myself on my face and/or neck.
  25. Don't give up! I am so scared for my first hearing. I started out with a lawyer and was denied all the typical first tries, I was told by my lawyer it would come down to a hearing. I can only hope to be approved on the first hearing, it would change my life dramatically.
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