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twinmom

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  1. I have the Medtronic Reveal monitor as well. I have had mine since January. Since my is basically to monitor what my heart is doing during my syncope episodes, if I pass out, or nearly pass out, place the hand-held activator over my chest and it records my heart rhythm during the event for my EP to see what was going on. It doesn't bother me at all. There are no leads into the heart with the Reveal - it just goes right under the skin.
  2. I take 1 and 1/2 salt tablets with each meal. They are 1 gram each (so 1 and 1/2 grams per meal). I just use the normal sodium chloride tablets - they are CMC brand ordered by my pharmacist. Even with food, I can only swallow the 1/2 tab., I have to "eat" the whole tab - meaning letting it dissolve in my mouth - or I get stomach upset. As far as side effects, as my body was adjusting I had increased diarrhea, but that has subsided. The tablets have helped keep my bp up and stable, and I have felt better on them. I do not have POTS, but orthostatic intolerance/syncope. Hope this helps!
  3. I have been taking 1 gram salt tablets with each meal for about 3 weeks now after my trip to the outpatient clinic at Vandy. They have been helping me a lot, but I have also been having really bad cramping and diarrhea. Is this common?
  4. I just wanted to give you an update on my visit to the outpatient clinic at Vanderbilt last week. I had the autonomic function testing (valsalva, deep breathing, cold pressor, orthostatic vitals) and of course the dr. visit. My main problems are tachycardia and syncope, along with lightheadedness and low bp. I saw the new dr. in the clinic, Dr. Cherdak. She is a neurologist. She also did a complete neuro evaluation. All the autonomic tests were normal except the cold pressor test, and I had some balance issues and loss of vibration sensation in my lower extremities on the neuro exam. She tested my B12 levels, and they came back low, so I am on B12 injections and she has me on 1 gram salt tablets 3 times a day and water for volume loading to help the bp. She also lowered my does of Toprol to 25mgs a day. She said it was some type of dysautonomia, but didn't classify what type because it didn't really "fit" in with anything. I also have inappropriate sinus tachycardia. I see her again in a month to see how the salt is working, to see if we need to add any additional meds. Anyway, just wanted to update you on the appointment. I hope that the B12 injections, salt, and lowering the toprol help. Donna
  5. Well, tomorrow is my appointment at Vanderbilt. I'm really nervous. I have the autonomic tests in the morning, and will be seeing the dr. in early afternoon (Dr. Cherdak). I'm really anxious to see what she has to say, and what treatment plan we come up with. For those of you who have been to Vanderbilt for an outpatient visit, any tips? Any possibility I might also get to participate in a research study based on my outpatient visit, or would I need to apply for that separately? Thanks for any input!! Donna
  6. YES! Some days it is all I can do to sit up while I eat dinner. I will go an lay down for about 30 minutes or so before it is time to get the kids ready for bed just so I have the energy to get through the rest of my evening. I hate it. Usually, I feel a little better just from laying down for a little while. I've wondered if laying down gets the blood back to the brain or what is going on. Often when I am feeling really bad if I just give in and lay down for a while I will receive a little "boost". Just gets my ego - at 34 with 2 small kids and an active family I don't like having to take these "breaks". Sorry, didn't mean to make this about me, I just wanted to say that YES, I'm right there with you. I'm not sure what causes it, though. Donna
  7. I'm sorry that you are having such a tough time with migraines. I take topamax daily, which I know you said you can't do, but I also take a beta blocker as a migraine preventative. The topamax alone didn't prevent the migraines, but adding the beta blocker has really helped. My cardiologist believes the beta blocker has helped so much because of the relationship between migraines and the the other issues I have. Best of luck to you.
  8. Hi. I am preparing for my Vanderbilt outpatient appointment, and I am weaning off my toprol xl so I will be off of it for my tests and appointment. I have noticed that as my dose has come down (I was on 50mg a day - 25 in the am and pm) I feel SO much better - less fatigue, more energy, more like myself. My cardio has me taking the Toprol to control my heartrate - without it, it runs high at baseline, and I also have espisodes of high heartrate associated with syncope/presyncope. On the toprol, I do not have any syncope, but I feel really bad/off of it, racing heart and syncope. So.....I do not think this is POTS, as it is not necessarily related to posture, but is most like inappropriate sinus tach. - at least that is what my cardio says. Anyway. I'm wondering if those of you on florinef and/or midorine find that those meds work for you to counteract the side effects of the beta blockers? Bascially, I need to be able to have my heart rate controlled, without the horrible side effects of bb. I'm really thinking it's because of my bp going too low on the toprol. I've been on both toprol and inderal, and they have both been the same. Any input? Thanks!
  9. I'm struggling to get my sodium. I was thinking of drinking powerade/gatorade type drinks and V8 juice - both sodium heavy. Any other suggestions?
  10. I currently take 100 mg. of topamax twice a day as a preventative for my migraines. It works fairly well - I'm down to 3 or 4 a month now. When they hit, Relpax works well for me. Interestingly, my migraines really started up about a year and 1/2 ago, about 6 months before my first fainting episode and all this tachycardia business started. I don't know if it's related, but I was perfectly health, active, ect - then the migraines started, then the rest.... I don't know.
  11. Jump, thanks for taking time to reply. That's one of the reasons I'm looking forward to my Vanderbilt visit next month. I figure if anyone will be best equipped to get to the bottom of what is going on it will be them. It's just scary, as I'm sure you and others know. I just want some clear cut answers - unfortunately, it doesn't seem like there are many in dealing with dysautonomia!
  12. During my fainting episodes, I always experience a really fast heart rate immediately prior. I had loop recorder put in Jan. of this year, and the last time I nearly passed out my heart rate was 188 as recorded on my monitor. My EP specialist thought did an EP study, but was not able to induce any arrhythmias. He is convinced it is autonomic - caused tachycardia. I'm so afraid that I'm going to go to Vandy and they are not going to know what is wrong with me either. I've seen 2 cardiac specialists that basically say my heart is perfectly fine - just with sinus tachycardia and syncope. I had a tilt done (didn't pass out, didn't drop bp) but when they introduced the isuprel and tilted me up my heart rate shot up and I started shaking all over. No arrhythmias again, just tachycardia. I just am so afraid of someone else telling me either "there is nothing wrong" or "we don't know what is wrong". I know something is wrong because I don't feel well like I used to. It can't be normal to feel this lightheaded and tired all the time. Ok, sorry to whine. I'm just frustrated. I was just hoping my vitals would show something, and obviously they aren't.
  13. I had to have 3 days worth of orthostatic vitals taken at my dr's office - laying down, standing for 1 minute, standing for 3 minutes. Here are the results. They seems entirely wacky to me, but this is the first time I've had this done, so what do I know! Opinions??? It will go in with my Vanderbilt packet for my visit next month. Day 1: laying down 98/62 hr 77; standing 1 minute 98/70 hr 71; standing 3 minutes 95/60 hr 85 Day 2: laying down 110/80 hr 80; standing 1 minute 100/80 hr 80; standing 3 minutes 110/84 hr 84 Day 3: laying down 110/70 hr 64; standing 1 minute 110/80 hr 68; standing 3 minutes 120/100 hr 64 My main problem is syncope/lightheadness/tachycardia. I'm on toprol xl 25 two times a day. When I call Vanderbilt they said not to discontinue the meds for this, which I found strange. Any insight??
  14. Wow, after being told it would be a year before I could have my outpatient appointment at Vandy, I was pleasantly surprised to find out that I will be going on 05/20 for my testing and to see the dr. They evidently have a new dr. the autonomic clinic - Dr. Danielle Cherdak - and that is who I will be seeing. Does anyone know of her? I'm excited and nervous....
  15. If you go for research, do you get feedback on your specific issues? I guess I'm just wondering since I really don't have any type of official "diagnosis" yet.
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