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Everything posted by RecipeForDisaster

  1. 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, the stress of getting to and around Boston, parking, trying to stay on time, finding the place in a rush... all of that improves my blood pressure. It was definitely higher because of all that, and I bet your situation was similar.
  2. 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.
  3. 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 giant one. I don't mind a copay, but seriously? The bill says insurance company but says they paid ZERO. What?!?! It was ordered by a doctor and totally legit. I've absolutely never had trouble getting my insurance to pay for anything... I don't even need referrals although I did have one. Anyone have an idea to explain before I spend the whole weekend freaking out?? Not to mention, almost 5 months later...
  4. 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...
  5. 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...
  6. 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, for instance. I'm very wobbly and fell over into a grocery display today. My geneticist (who can't test me for anything because I don't have a diagnosis. ???) believes this is dysautonomia . She set me up with another highly recommended cardiologist who can't see me until August (yes I am on cancellation lists and begged for earlier appointments telling them I was not doing well), and I will see a new neurologist who will actually talk to me, also in August (same deal). No one knows what to do to help me... I think my cardiologist mentioned POTS but that it's rare (ugh). Once I came back with the negative TTT, that was it. I don't believe I have EDS as I'm not that flexible. I've never had standing norepinephrine levels checked. I guess I haven't seen anyone knowledgeable (although I saw a good endocrinologist who found nothing except high renin... a byproduct of low blood pressure). I might be hyperadrenergic based on my terribly pounding heart and fast rate despite being fit. I haven't found anyone who will prescribe me anything except for metoprolol for my tachycardia. I'm grateful for that but I do think I might need more treatment! I wish i could see more doctors but I can't get in to see anyone anytime soon! I have good recommendations for the ones I will see in August. I haven't had a systolic blood pressure above 110 for quite some time. I've been off the anti hypertensives for about 6-8 years... as my pressure came down my primary at the time removed one, then the next. I guess it's good not to swing not back and forth, but I feel like the life is leaving me as my pressure gets lower and lower. I make high calorie smoothies that I enjoy (peanut butter, protein powder, chocolate ice cream, banana, etc.), but I have been so nauseous I can't always get myself to drink them lately. Thanks for the help... keep it coming!
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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 holding some of my meds and had no effect other than worse symptoms that they would have treated. At this blood pressure, I have so much nausea that I cannot eat and I have not been hungry since Sunday. I've already lost some weight as I usually eat often, and I adore food. I've tried tempting myself with all kinds of treats and nothing works. It's not the "I'm going to throw up" sort of GI nausea... hard to describe, but it's related to low blood pressure. I have forced myself to eat something every day, but I am weaker and feel worse afterwards. I'm using metoprolol which helps with the tachycardia and pounding heart (it never really seemed to lower my pressure and I only take 25mg per day) a minimum of 4 liters of water and 4-8 grams of salt daily. I take a lot of supplements which may have helped a little... I wear compression sleeves (I do think they help somewhat), no longer take warm baths or even use a heating pad on high (same effect lowers my BP). It's not hot here and I am not outdoors much if it's above 65 or so. I used to exercise a ton and now half a mile of walking feels impossible. After I exercise my blood pressure goes down and stays there. I'm still pretty fit, though, and I keep trying. I have no diagnosis relating to this yet other than idiopathic hypotension, exercise intolerance, tachycardia, and palpitations. I can't get in to see the new cardiologist who deals with dysautonomia, or the neurologist, until August. My current cardiologist has done all of the testing he could think of and has no more ideas. He wants me to see my primary, who would either tell me to see my cardiologist, or just spend the usual forty seconds with me and shake his head. Maybe he'd send me to the ER which I think is silly.. if my multiple doctors can't diagnose or treat me, how would a new one? This is a chronic problem and not an emergency anyway. I've seen an endocrinologist and ACTH stick with nothing showing up there either. I am interested whether fluids would help but but I am sure I can't get them prescribed. I would love to see a new doctor soon but I have asked doctors to call to try and get me into sooner, been placed on cancellation lists, etc. to no avail. I'm getting a new primary, but he can't see me until September.
  12. 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.
  13. 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 or so, I'll have a night with not one moment of sleep. It absolutely ruins me... I have a great, positive outlook most of the time, but after a really bad night of sleep I get scarily dark and gloomy. I also guarantee myself a cold once I go 3 days with really low amounts of sleep.
  14. 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 no one knows what the heck it is. I'm sick of "idiopathic" anything! I just want answers and my life back. I really don't believe anyone realizes how bad we feel... they just compare it to "tired"
  15. 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 cardiologist who is trying to help me.
  16. 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 palpitations and insomnia which is secondary to palpitations. It hasn't helped my pressure or how often I almost faint or collapse.
  17. 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.
  18. 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??
  19. 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't? I was hypertensive most of my life so I feel lousy even at 100/70. Other meds have given me edema, so maybe that's why it hasn't been recommended. I'm also not seeing anyone who would likely prescribe it... my primary doesn't get it and my cardiologist just wants to fix my heart. I think he tries but doesn't really understand autonomic issues. He has no idea why I'm hypotensive and tachycardic. Thanks for the encouragement! I will keep pushing... I just want a doctor I can trust who understands this. I should have my results in hand today. I don't expect POTS but if nothing autonomic came up I'm going to scream. It just can't be.
  20. 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 I need, based on labs or whatever, and can't get it ordered (even stuff as innocuous as blood work!), or I can't "make" a doctor see me, in this case. I don't know who can help with my autonomic issues... I would like to have the genomic testing for pharmaceuticals and I can't get that ordered either. It's sad.
  21. 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 any form of dysautonomia... I don't think they tested my (lack of) sweating during my TTT as it said they would. All I know about the results is that I had a bunch of heart rates and blood pressures that triggered alarms.... I only saw 1 BP result under 90 but I couldn't see the screen for 99% of the time. I'm doing worse, also.... today I've been out of bed since 2am due to my pounding heart, I've had more days when I didn't ever get to sleep, I'm collapsing more frequently and my baseline BP has gone down. Walking the other day my heart rate was 161 (while on 150mg diltiazem). I believe that my palpitations are much worse when I have very low BP, and it didn't seem that diltiazem ever really affected my rate, so my cardiologist just switched me back to metoprolol succinate ER 25mg but trying twice daily, maybe three times, as I seem to metabolize it very quickly. My primary is working on the prior authorization for genomic testing for medications. I am very fit and lately I am collapsing (clammy and nauseous) after every walk, predictably. I tried to go 100' the other morning and my legs wouldn't hold me up. I'm constantly toppling over into walls and furniture, just very shaky and weak in a faint sort of way. However, I feel lousy at night when I'm trying to sleep, so lying flat doesn't help that much. I found an interesting study about hypotension and insomnia. When metoprolol wears off, I feel worse than ever... tachycardia and chest pain, usually waking me at 3am when I take it at 9pm(that's when I go to sleep, since I'm so tired). I think it would be a good solution for me if I could get it to a steady level. It helps lessen the pounding although I don't believe it ever changed my rate. One of my doctors believes that my issue here is tons of circulating catecholamines and that drugs can't override it... but I'm hyPOtensive so I don't know how that would be likely. The specialist came highly recommended and I don't know that I'd try to get in with another local Boston neurologist after this. The recommendations he made must not be too different than what we're doing since I wasn't contacted by either doctor about any changes.... and right now we are just trying to mask symptoms and grasp at straws.
  22. I'm outside a lot and I have a sunlight lamp for vitamin D (I supplement it too). I'm cold a lot, and keep the house at 60f. I will check out Jack Kruse. I feel better without the diltiazem, for better or worse. I still woke up hot and tachycardic at 3am, but metoprolol gave me a few hours of sleep before that, at least. I skipped magnesium just to see if it changed how metoprolol worked, but no.
  23. I'm going to ask about ivrabidine. Please tell me more about light! I do take 500mg magnesium nightly. What is the cold about?
  24. Interestingly, I normally take iron but I have missed a week or two lately because I am not eating much. I didn't take it when I was on the metoprolol. I don't take antacids but I do take magnesium at night, hmmm. That, vitamin D, folate, and B12 are my only vitamins. i have pretty bad asthma so they want me to be on a specific beta blocker that doesn't affect breathing as much. I also have low blood pressures, so I don't think we can really bump up the dose. It's okay to break metoprolol ER cleanly down the scored mark as it's actually divided there. If you crush it, that's not okay. I was wondering about ivrabidine... I am afraid it's "too new" for the doctor to be comfortable with, but it sounds really good. Thanks!
  25. My doctor wants me to have the steady, extended effect of metoprolol, because I asked about the short acting twice a day. He said my heart could have issues with bouncing back and forth. That's really interesting about the metabolism research! I will ask about that-it honestly seems like it's gone after 3am (I take it at 6pm since it should be with a meal). I was also thinking of taking it right at bedtime without food so it would work for the entire night. It seems like if I took the long acting 12.5mg 3 times daily at a tiny dose it would work well, but it would "look" crazy. On the other hand, it makes me a little sleepy, so I'm not sure if I really want to take it in the morning. He wants to bridge me over to long acting diltiazem once we find the right dose, but I just don't feel as good on it, so far. I guess I'll give it a total of 4 days? Is there anything else that people have had success with for pounding heart? Sometimes my rate and pressure are even decent, heart rate fast for sleeping at about 90-100, when it's very bothersome but I have not gotten to check my pressure in the wee hours when I wake.
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