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Everything posted by dkd

  1. Sorry the appointment wasn't that great. I've lost my hope in doctors really. Actually I didn't have much hope in them to start with-haha. Hoping the new medicine will help!! *fingers crossed*
  2. Best wishes to you and let us know how it goes. Maybe some fresh eyes and new doctors will see something different. Have a safe trip!
  3. I wonder if the nitro caused the weird feeling? I found this online at drugs.com: When you begin to feel an attack of angina starting (chest pains, tightness or squeezing in the chest), sit down. Then place a sublingual tablet in your mouth or under your tongue. If you use the oral spray, you should spray it on or under the tongue. You may become dizzy, lightheaded, or faint soon after using a tablet or spray, so it is safer to sit rather than stand while the medicine is working. If you become dizzy or faint while sitting, take several deep breaths and bend forward with your head between your knees. Remain calm and you should feel better in a few minutes. http://www.drugs.com/cons/nitroglycerin-oral-sublingual.html
  4. Thanks for giving us an update and I'm glad you finally got to the bottom of what was really wrong. I struggle everyday with wondering if there is something else really wrong that I should be getting checked out. I have even asked my cardiologist about pulmonary hypertension, but he didn't think so. I had a transesophogeal echo in Jan 2013 and it was normal, but that was at the start of my symptoms. Take care of yourself!!
  5. I used to have a mini trampoline and then I had neck issues and my physical therapist told me it would be bad for my neck/spine, so I got rid of it. Also, I have read that walking also helps move the lymphatic fluid, so I'm not sure if I buy the hype of the rebounder being especially good for that. (I'm a skeptic in general-haha) I did feel like my legs got fairly toned up using it. Have fun with it!!
  6. Isometrics are holding a position, like a plank or a wall sit (there are many others), for an amount of time. I used to do a lot of isometrics before I got my dysautonomia diagnosis. The important thing is to breathe (not hold your breath and strain) when you are doing anything isometric. Since you've tested it, maybe you should just avoid them all together. I now use light hand weights and resistance bands to do just basic exercises (dumb bell curls, triceps kickbacks, shoulder raises). Just be sure to not hold your breath. Also squats and calf raises seem ok for me. I used to follow videos too and I don't seem to have the energy anymore either. I never could do Taebo though-lol!!--even when I was in good shape!
  7. Unfortunately, the beta blocker and midodrine have not helped with my shortness of breath. I had high hopes of that, but to no avail. They do keep my heart rate down and help with my syncope episodes though.
  8. I feel like I have muscle tightness from the bottom of my sternum up into my throat, with shortness of breath. My primary care doc did a pulmonary function test which showed that I had 'air trapping' which was suggestive of neuromuscular disease. She then referred me to a pulmonologist which repeated the PFT and he said it was normal. Sometimes I feel like my diaphragm cramps up. I don't know what the cause is. I gave up trying to find out
  9. That sounds exactly like my episodes. I usually stand up too! My cardio said I should lie down and put my feet up, but I get so panicked, that my instinct is to stand up and try to 'fight it'. Maybe try to put your feet up next time. I also try to take deep breaths and try to relax myself. It seems to pass after that. The very first time, I thought I was having a stroke or something and I totally freaked-called 911- but was better by the time they got there. Luckily since being on a beta blocker and midodrine, I've not had anymore of these episodes. However, with you taking prednisone, that very well could be the culprit.
  10. Hmmm. Sounds like maybe a blood vessel burst?? The morning that I had my first NCS episode, a blood vessel broke on the bottom of my big toe. It's really painful--like a knife is sticking in you. It didn't make a lump, but it did have a nasty bruise. I don't know if it's related to the onset of my NCS, but I always tell doctors about it. They just look at me with a puzzled look though. Could also be possibly a tendon rupture??? I've heard when they break, it balls up and makes a knot. Hope you feel better soon!
  11. I take a beta-1 selective bb (betaxolol) and it hasn't affected my sleep. I read something about the non-selective ones can cause sleep disturbance and nightmares/weird dreams (especially propranolol). I'm sure if you google you can find something that says to that effect. So maybe your doc could try a cardio-selective one. Good luck!
  12. Sarah, has no doctor investigated the high calcium yet? I would ask for a phosphorus, a PTH (parathyroid hormone) and a magnesium. An endocrinologist would be a good doc to go to or your general practitioner could do the lab work and then refer you if needed. Best wishes to you! I hope you get some answers soon! Edit: Oh, and a vitamin D level also
  13. My beta blocker keeps my HR down so that part is better, but I still have other symptoms (mostly pressure in my throat and face and weird nerve sensations). I started on atenolol which made me extremely tired. Doc switched me to acebutalol next and I had a weird decreased respirations episode with that. Next I tried betaxolol and seem to be ok on it. I've taken it now for about a year and a half. When I started, he said there was a whole list of betas that I could try until I found one that 'worked'. I had high hopes of it fixing all of my symptoms, but it has not. Oh, and if you decide to try it and it doesn't work out, you can easily just quit taking it. They don't stay in your system very long.
  14. I had always been healthy-didn't really have a doctor except for when I had my two kids. Oct 2012, I had a tingling/syncope episode and went to a internal medicine doc the next week. She ordered a treadmill stress test and I wore a Holter monitor for 48 hours. They told me my stress test was inconclusive because my heart rate was at 135 when they started so it didn't take very long for me to get to my target HR. They said the Holter was normal. She sent me to a cardiologist who did a nuclear stress test that was normal. He just told me to exercise more. Right after that, I had another episode in the shower with tingling on my face and dizziness, so I thought I might be having a TIA, so I called a neurologist. He did a brain MRI which was normal. He did some other blood work for Lymes disease, myasthenia gravis, clotting factors, other things I can't remember. He really did try to help me, but everything came up normal. He sent me to an endocrinologist, gastroenterologist, ear nose throat doc. Everything came back 'normal'. I had another pre-syncope episode and decided to go back to cardiology. The previous doc had left the practice so they gave me an appointment with the Electrophysiologist. He looked back at my records, especially the Holter monitor that I had been told was normal, and he said "I think you have dysautonomia". He ordered a tilt table test that confirmed it. I've been put on a beta blocker and midodrine. My heart rate is down, but I still have other symptoms that bother me (pressure across chest and up into face, fatigue, shortness of breath, ringing in ears, tingling on lips)
  15. I don't really have any answers, but I do have a muscle that cramps when I'm in the shower. It's in my mid/lower back on my left side and it feels like it goes around to the front. It feels like it's my diaphragm, but I'm not sure. Once it cramped up so bad, I could hardly stand up straight. I mentioned it to a couple of doctors, but haven't gotten any comments/theories really. I haven't been swimming in years, so I don't know if it would happen in a pool or not. I seem to think mine is related to heat hitting the muscle. Pools are usually cooler, so I don't know?
  16. I don't know if I have abdominal pooling or not, but I have a 'funny' feeling in my abdomen. I really don't know how to describe it, it just feels funny (weird). I have thought of getting a binder but haven't yet. I looked at them at the store the other day and thought they would not be very comfortable, so I didn't get one. I looked in the sporting goods dept at the ones that Velcro around you and I looked in the lingerie dept at the shapewear type garments. I would like to know also what kind people wear and if they help. I assume it helps some or people wouldn't wear them The day I was looking, it was sooo hot outside and I couldn't imagine walking around in a binder on such a hot day.
  17. I had the nuclear stress test yesterday and I heard back from the tech today (not the doctor--a little disappointed in that). My ekg changes were still abnormal when I did the treadmill part, but the nuclear imaging of my heart was normal. All areas of my heart were getting blood flow, so no heart damage-yay!!
  18. Itchiness was the main reason I went to a gluten free diet. It seems to have helped.
  19. I would like to know also since this is my worst symptom. I have NCS also, and feel short of breath after standing. I had a pulmonary function test at my GPs office that suggested 'possible neuromuscular disease' due to air trapping. She sent me to a pulmonologist and he repeated the test and he said it was normal. I don't feel 'normal' though He didn't give me any answers. Told me to come back in 6 months, but I didn't go. Sometimes I feel like my diaphragm is tight, so I wonder if that is restricting my lungs? I don't know. Very frustrating!!
  20. Thank you. I'm not sure whether I read it somewhere or a doctor told me, but a lot of women can have a bad regular stress test, but the nuclear is ok. I'm not too worried about it. I had a pulmonary function test once that said I had possible neuromuscular disease and I was all upset and the repeat test was perfectly normal. So, I'm trying to not get too upset about this either until I know the full picture. I'll let you all know how it goes.
  21. I would go to a cardiologist and get checked out. I too have shortness of breath and weird feeling in my stomach. I also have pressure across my upper chest, throat, and up into my face. I had a treadmill stress test a couple of weeks ago and it showed some abnormalities, so I'm supposed to have a nuclear stress test sometime soon. We also just had a forum member who found out she has a bad heart valve. So I really think you should see a cardiologist. Best wishes to you!!
  22. My HR does that. I really don't worry about it. But I don't know if it's anything to worry about or not?? I'm just glad mine stays below 100! On the atenolol--- My doc told me he had a list of bb's that we could go through till we found one that I could tolerate. I tried atenolol, acebutalol and then settled on betaxolol. Maybe you can call your doc and see if you can try a different bb. Have you tried taking 25 at night and 25 in the morning? Maybe that would make you not so tired? But check with your doc to be sure.
  23. Just heard from the doc--my stress test showed some EKG changes that might mean some damage at the back of my heart--so need to have a nuclear stress test now
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