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Everything posted by RecipeForDisaster

  1. Yes, I have allergies and very bad asthma. I was really afraid to take metoprolol but started at a very low dose and worked up. Knock on wood, I have had no trouble with it and it has helped me feel better with less tachycardia and pounding. I take 25-37.5mg daily in the extended release 24 hour form.
  2. Tough day, hours spent at new cardiologist this morning! Came home and had sour cream and onion chips, a chocolate bar, and some pistachio ice cream with chocolate chips. That's better.
  3. I just want to tell you that I reached a diagnosis "dead end" because of a "normal" TTT as well. I did not have norepinephrine measured and there is zero detail in my results, only one BP measurement for instance! I also think that the stress and rush of getting to the city, parking, finding the place, etc. made my numbers look better. I always have higher BP when stressed and I do know that my BP was under 90 for a good portion of the test anyway. I was feeling faint but didn't pass out. Apparently that is okay? I am seeing three new doctors in the next two months and don't know what to
  4. I can only handle half a beer anymore (I never got affected by any type of alcohol before, or got hung over, no matter how much I drank before, hard liquor, etc.). Oddly, I can't drink any wine at all. I have tried a literal SIP and still had terrible pounding tachycardia and profound overheated feeling later on. That's what happens if I drink even one whole beer. It's sad because I love craft beer and now I can only share -one- with my husband.... no wine tastings either...
  5. I'm in the exact same boat. Apparently improperly done TTT, and my report showed only the BASELINE heart rate and blood pressure, not one reading during the test although I know my pressures were below 90. Grrrrr. Doctor didn't see me either. Thank goodness my test didn't use isoproterenol because I don't think I could handle it. I can't get in to another doctor until August. My TTT was in January and I didnt get results until March or April. I'm also getting worse and worse. I hope you find an answer as well. I'm thinking I have cerebral hypoperfusion which they did not check for. Also,
  6. I never got an EOB, or any inkling that there was a problem! It's weird that they wouldn't hill blue cross but would still list them on the hill as paying $0. I will certainly call their billing office and the insurance company, but the problem is that I can't until Monday.
  7. I had my TTT in January and it came back with absolutely nothing helpful. It was ordered by, and a prerequisite for seeing, a neurologist at the hospital that performed the test. I learned later that it wasn't done right and others have had false negatives there. Grrrr in itself, right?? Just now, after everything is closed for the weekend, I got a $2,000 bill for the testing (which I will be repeating elsewhere after seeing a new doctor in August) . I have very good insurance company which they had recorded months before the test, and was never told there would be ANY bill let alone a gi
  8. I am on metoprolol for the same reason, and while it has helped with the tachycardia and pounding heart, I have plenty of times where I feel horrible with a heart rate of 80...
  9. I would love to try that. We don't have anything like a hydration clinic but I live a bit over an hour from Boston. I just don't have anyone willing to help me, really. It doesn't help that they don't know what I have. The neurologist is an autonomic specialist, so hopefully he can help me... in 3.5 months I realize that having blood pressures sometimes below eighty is dangerous in itself...
  10. The cardiologist didn't run a TTT. I had one (without cerebral Doppler) ordered as a prerequisite to seeing a neurologist who specializes in dysautonomia and it didn't show anything. From what I hear, the test was not done correctly, and I was super stressed about traffic, being on time, and finding the place, which always improves my blood pressure. I'm not sure I have POTS but it's definitely something! I don't have huge increases in my rate but I get dim and hypotensive when getting up. Lately I can't see at all (just about completely black out) when I get off the couch to answer the phone
  11. I'm on such a tiny dose of metoprolol that it never affected my blood pressure. I tried going without it and it didn't improve. For some reason my cardiologist did not want to use ivrabidine.
  12. I do use caffeine although I can't handle much before my heart rate gets too fast. I love one cup of strong french press in the morning. That's interesting about sugar... It makes me feel worse. I'll try adding a lot of sugary stuff to my high calorie shake. That's about the only way I can force lots of calories into me these days. Thanks for the ideas.
  13. I have tried chugging. In fact I never get thirsty and don't like to drink, so I normally do chug down my water. I do eat low fat sometimes and it doesn't seem to matter what I eat-as long as it isn't all white flour/sugar, and isn't too much food. I love vegetables and I haven't been interested in eating those either. Normally, I feel better on more fat and fewer simple carbs. If I could get my pressure up, I'm sure I would want to eat again. I wish I knew why my pressure kept going down.... the idea of this trend is kind of scary.
  14. Thanks. So even if I get IV fluids, I might not get a full day of relief. I need an appetite! I will think about whethe I can get anyone to write it. It's honestly feeling like none of my doctors care much about me... they never call back to check on me or anything. I think they are all giving up.
  15. My blood pressure has steadily trended down despite doing everything I can to bring it up. Every month or so, I go down another 10 points and don't go back up. The exercise tolerance, blacking out, wobbliness, nausea, etc. get worse corresponding to my pressure. Since Sunday I've been in the low 80s and I am only comfortable when I'm above 100 due to baseline hypertension. On Sunday I was 80/48 laying down and couldn't muster the strength to open my eyes all the way or talk very much. I think I've gotten used to it a little so I am functioning a little better with the same pressure. I did try
  16. My story is very different from yours, but I can completely relate to your feelings. I'm not sure I have POTS either... it seems to be some other kind of even harder to diagnose autonomic issue. It's extremely frustrating... no one really seems that motivated to figure it out and I am lucky to even get treated with "band-aid" remedies.
  17. This is oen of my biggest complaints. I rotate through various supplements or Benadryl so I don't get used to any of them (different one every night)-some more effective than others. I definitely sleep better when I've been able to be active that day but of course that's another of my problems. I don't do well with exercise anymore. Metoprolol has helped because it "blunts" the pounding heart that seems to be 99% of the reason I can't sleep. By 3am I am often up for the day because my rate is fast and pounding. I generally get 2-4 hours of sleep and I go to bed by 8pm. Once a week
  18. Thank you. I found a cardiologist who specializes in autonomic dysfunction, and am going to see Dr. Novak in August. I did get my results and they are soooo vague, 1 page, "normal this normal that" when I know my BP was setting off alarms under 90, all over the place. I don't consider that normal but that's just me. It's interesting to note that I've talked to others who said they had normal TTT results with the same laboratory and then came up positive somewhere else. No doctor present and no meds given. Or maybe somehow this isn't autonomic (I've always said I don't think it's POTS) but then
  19. Thanks. I've been encouraged to try to see Dr. Novak or Dr. Hohler. I'm not sure I can get my primary to refer me out again, though.The support here has been really helpful. Part of the issue is that Dr. Gibbons who ordered and interpreted the TTT is pretty well respected. But obviously it isn't normal that I can't get my blood pressure to stay at a level where I can function, and I can't stir a bowl of batter without blacking out. I still haven't seen the results... I am hoping for something more concrete and treatable than "idiopathic hypotension" and tachycardia. I am grateful for my cardio
  20. Thanks. I was very fit with a low resting heart rate, too, so 85-110 feels uncomfortable at rest. Ditto my blood pressure which used to be high and so 100/60 feels awful. I won't even describe 76/50 as it was the other day. I can't decide if I should push to see another autonomic neurologist or if the "normal" TTT will cause her to dismiss me. I still walk and ease into things, but I have "surprise" near syncope even when I'm doing everything right, and after every walk lately. I'm doing everything except florinef and I do think the metoprolol is helping some aspects... mostly the p
  21. I'll definitely get the results, but Dr. Gibbons is supposed to be the master in this area (Boston) , so I don't know who I'd take the results to. I am very curious about the low BPs during the test. I guess those are "okay". They never did draw blood during the test. I'm hoping I can get someone who's good at figuring this out. It has to be autonomic with the temperature, sweating, BP, tearing, etc. issues.
  22. My primary said that the TTT results are simply "normal". That just cannot be. All of those hours of testing and everything was great? I know my blood pressure was low, even at the end of the test when I was leaving after sitting for a while, it was below 90, and my heart rate was high. The questionnaire they gave me raised a ton of red flags. I can believe no POTS but seriously everything is supposed to be like this?? Maybe they don't read the questionnaire if you don't come up with POTS??
  23. My cardiologist didn't run the TTT, the neurologist (Dr. Gibbons who isn't following up with me) did. There was no blood drawn. I wasn't taking anything that could change my levels, though I wasn't really being treated before my TTT (nor now, except for the metoprolol I'm back on), just taking supplements, some of which did seeem to broke. But, my BP is always higher when I'm stressed from traffic, parking, etc. so it would be hard to see my real stats. I don't understand how my body can bring up my BP when I'm annoyed but when I'm sitting here 76/50 and nauseous on the floor... it can'
  24. Thanks. I'm really not an anxious person and I'm in healthcare so I understand my paperwork. Just hate it when I'm sort having the ball dropped... I'm doing so poorly and if there's something I could be treated with, I wish I knew that on the 6th when the results were available. I'm drinking 3-4L of water and tons of salt. I don't think it's helped and interestingly I have craved salt for ages, and never got thirsty so didn't drink much for my whole life. Still trying to stay fit but it's complicated when you collapse afterwards! My problem is often that I do know what
  25. I'm pretty discouraged... it turns out that two of my doctors have had my TTT results since 2/6 and I have talked to one (cardiologist) several times since then with no mention of it. The other just hasn't contacted me. I figured the results weren't in yet. All I know is that the specialist isn't booking me to see him which I find very discouraging. I thought he might be my answer. He just "made recommendations" to my other doctors, who don't know much about dysautonomia. Since he is booking 9 months out, I was really hoping to at least get an appointment. I can't imagine that I don't have an
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