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Everything posted by RecipeForDisaster

  1. 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.
  2. 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.
  3. 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.
  4. 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??
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. I'm going to ask about ivrabidine. Please tell me more about light! I do take 500mg magnesium nightly. What is the cold about?
  10. 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!
  11. 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.
  12. I was prescribed metoprolol succinate 25mg ER and I found that it helped my pounding heart to lessen and therefore let me sleep. However, the effect wore off after about 8 hours even though it's a 24 hour formulation. Odd!! It didn't affect my heart rate or BP at all. My rate isn't always terrible, but even 90-100 and HARD while you're trying to sleep is too fast for comfort. I had no problems with the metoprolol other than the fact that it didn't last long. I slept much better than without it but never past 3am. Last night I didn't sleep at all and that's not too uncommon. Nothing helps me sleep "through it" when the pounding is bad... just the metoprolol because it lessens the force. When I told my cardiologist how fast the effect wore off, because I would wake up at 3am every morning with the severe pounding and could not get back to sleep, he switched me to diltiazem, starting with 30mg twice daily last night. Strangely, it hasn't affected my rate or BP either (I know it's a tiny dose to start with) but it hasn't helped the pounding, either. I did feel a little more lousy (lightheaded, weak) for a few hours after taking the first two doses, but after multiple checks I found that my BP was the same it had been. My BP has been quite low recently even before either of these meds, so we are being careful with dosages. I collapsed while walking yesterday and had to lie on the floor for a while the day before. I feel grateful that the doctor will even give me anything for this symptom given my blood pressure. He does want my rate reduced if it can be done safely. I'll get my TTT results in a couple of weeks. I didn't pass out but I felt pretty woozy during the tilt. I know the BP alarm went off a few times as well. I don't think my rate was terribly fast, though.
  13. I love my cardiologist. My exercise stress test said while my BP was low, I'm in okay shape for being sedentary/unfit. That is not me. Desipte discomfort I continue to walk, hike, horseback ride, or kayak four or more times per week. My "usual" walk or hike is six to ten miles. I'm not always managing to finish that length anymore but I keep trying. My resting heart rate used to be under sixty. It hit one seventy in six minutes of walking. It was a hundred sitting quietly for an hour in his office. Sorry my numbers keys are not coming up! Because my resting rate was so low before I got sick, I believe a hundred or one twenty is pretty fast. That's where it is at night when I wake up and it's very uncomfortable... but it doesn't set off "alarm bells" because it's not one fifty or anything. The cardiologist says that he would almost diagnose me with inappropriate sinus tach but my rates aren't usually fast enough. He put me on metoprolol succinate ER, a tiny dose. When I take it after dinner, I fall asleep much easier as the pounding heart isn't as bad. However, I still wake at just about three thirty every morning with a pounding, half as hard as before but still too much to sleep through, and a fast rate and I cannot fall back asleep. I'm getting about four hours of sleep which is better than the zero to one I was getting before metoprolol. My rate and BP have not changed and although he was curious about my exercise tolerance it has not improved. He offered diltiazem which I may try. I was happy that my BP wasn't affected, at least. I don't feel much different on it during the day although it should work for twenty four hours. I've had a cold and my heart pounding and fast rate are so much worse when I do! It's by far the most bothersome part of the cold. I don't take any meds for the cold, btw and this is whether or not I have a fever. My TTT is Tuesday at Beth Israel. I'm stopping metoprolol today just in case. I'm off all of my supplements as well... I think they were helping. I don't think I will come up with POTS but I do think some other autonomic issues will show themselves. Right now I am most bothered by not being able to sleep due to pounding heart, exercise intolerance, and presyncope.
  14. I had the same PCP for 20 years and while he was still interested in practicing he would have done anything to help me. In the last few years he kind of checked out before retiring. I don't think my new PCP is like that at all but I will check with him about doing an active stand test. I haven't had any autonomic testing at all, just lots of bloodwork and ACTH stim. I haven't had a holter in many years, but I do have continuous heart rate data from my Fitbit. You can certainly see what time I wake up by my heart rate! i don't usually pass out from standing... that happens a couple of times per year or so. I get "dim" and wobbly and faint but I can tell that's all I will have, most of the time. Othe than the increased fluids and salt, is there anything else I can do to help myself? I took myself off three blood pressure lowering drugs because my PCP had sort of checked out by that time and my hypertension was certainly gone. I've tried knee high TEDs and they didn't seem to help. I exercise, very low impact like walking, as much as I can and I think it helps in the long run even I feel I feel awful after a few minutes. I don't think I could manage any stockings that cover the stomach even though they are a lot more effective.
  15. I have this, too. I hope we can test for it and get it treated. I'm always getting out of bed for the day at 2, 3, or 4 am because I'm positive I won't get to sleep while those feelings are occurring. Melatonin, Benadryl, and valerian root separately haven't gotten me to sleep through them. This is one of my biggest issues. I'm not anxious and have great sleep hygiene and a CPAP. It's hard to get to sleep with the pounding heart in the first place and once it wakes me up, I'm done.
  16. Thanks for the link which did give me a few more leads. It sounds like a six month wait and having to "qualify" to get in with any of them, though. Yes, you are correct.... I hope I'm lucky enough to pass out? I'm sure everyone knows how your record low blood pressure is never documented because it was done manually out in the woods or in a store.... why can't that be at a medical office? Just luck.
  17. Unfortunately, not just because of my health, I won't be able to travel that far. I'm in New England. I started out with that list which is how I found Dr. Gibbons. Most of the other doctors I tried aren't taking new patients, only see kids, etc. Fortunately my insurance will let me see anyone without a referral, but I can't seem to find anyone. I hope this cardiologist I'm going to see surprises me with his knowledge or willingness to learn. Even if I can get in with Dr. Gibbons, I can't imagine living like this until June. I'm also a tiny bit afraid of the tilt table test because my throbbing and racing heart feel so uncomfortable without being given isoproterenol or epinephrine. I know it won't be dangerous, it's just such an unpleasant feeling. I feel like I'm definitely hyperadrenergic.
  18. Thanks. I do take magnesium as well as vitamin D, B12, folate... Previously, I had very minor leaking of three heart valves, but it wasn't supposed to affect anything. My baseline blood pressure is now about 60-70 percent of my previous baseline. That's what I don't understand. But keeping in mind my fast heart rate and temperature regulation issues, I think this makes sense. I just can't seem to get care from a specialist and I don't think any of my doctors are well versed. To them, the idiopathic label and no treatment seems good enough.
  19. I called Dr. Christopher Gibbons' clinic in Boston and was told that I needed a doctor to submit documentation on my behalf to see whether the doctor will see me. Then I would be scheduled in June although I could have a tilt table test in December. My primary really dropped the ball with me because because he was retiring, and I've only seen my new primary, a PA, once. I'm not certain he's going to be a good fit. I've seen an endocrinologist once, as my new primary wanted me to, and he was pretty thorough although he cleared me as far as needing to see him again. I'm seeing a cardiologist next week, basically a random choice because hte onds recommended are not taking new patients. The issue, as I'm sure many of you know, is that many doctors aren't well versed in autonomic dysfunction so I am not sure they will write me up as potentially having a disorder. I did my own research which led me here. If I can't get that, I can't see the one doctor who definitely knows about it. Waiting until June isn't gong to work either. I guess I just hope that the cardiologist is more knowledgeable about autonomic dysfunction than I expect, or that he finds something he can work with? If you can't get care from anyone knowledgeable on this sort of thing, how do you get diagnosed or treated? This label of idiopathic hypotension isn't getting me anywhere. I was blacking out in the grocery store again today and had to support myself on a cart to get through without collapsing.
  20. Thank you! There are no specialists in my state and not many in the adjoining states. Do I sound like someone with some sort of autonomic dysfunction? I sure think so. It's good to know that not meeting the pulse increase at all times does no good rule me out. Sometimes I have a drop in blood pressure when standing and sometimes not.
  21. I am new here, but think I have had these issues for quite a few years. They sort of just seemed like "me" and I have been realizing more and more that "me" is not normal or healthy. I love to hike, horseback ride, and kayak but I have zero stamina or exercise tolerance. If I'm even stirring pancake batter and I don't take lots of rests, I start to "dim out" and will get a little nauseous and faint feeling. I'm not very orthostatic for the most part, sometimes 8-10mmHg difference from sitting to standing, sometimes no difference. The dimming also happens I feel I get up to answer the phone or something. I can't tolerate heat or cold and am always swinging from one to the other. It feels sort of like fever and chills but my baseline temp is really low, usually 96 degrees. I nearly never sweat except when I'm going to pass out. I don't when its hot out and I never get thirsty. My hands, feet, and nose are always cold and my knees and ankles often have purplish gray discoloration. I have very puffy eyes in the morning lately. I'm also beginning to experience migraines for the first time. I just had an endocrinology workup including ACTH stim and the only thing up was high renin ( a sign of low blood pressure). I've had tons of bloodwork. My blood pressure was always high (on 3 meds for hypertension 20 years ago, 148/88) and is now 90-100/60 most of the time. Nothing in my life changed since I was hypertensive. I haven't been able to check it at any of the worst times but the lowest I've recorded is 82/56 (still quite bad compared to my previous normal!) . That does go up into the 120s after driving in traffic and stuff, so my body -can- bring it up. I've had several instances of near fainting and blacking out, cold and gray, sweating and nauseous on the floor including on sidewalks and at work. I need for that to stop! It's sort of random and doesn't have a connection to anything that I can think of. When I feel rotten, food and water don't help. I tried drinking 4L of water a day for a few weeks. No difference. I already love salt and eat lots of it, but I did a trial of very high salt and that didn't seem to help. No way is my normal diet low in salt! My heart always throbs in my neck, chest, ears, etc. I can see it through my shirt and it makes my laptop screen wobble in time to my heart rate. My rate isn't terrible but often 80-110 at rest (previously in the 60s-I'm still fairly fit) . It's the palpitations that bother me. I have one cup of half caffeinated coffee a day and I have tried cutting it out with no benefit. Often, my symptoms are worse after eating. I think they are less severe if I stop eating well before I am full. Previously, I had very very low B12 (120!) and wonder if that caused nerve damage. I also had low vitamin d (11) and ferritin (6, I think). Those levels have all been restored. I have a CPAP for sleep apnea and have trouble falling asleep with the palpitations. They wake me up and it takes hours to fall asleep again. I sleep lightly anyway even with blackout shades and a white noise machine. I am wide awake early in the morning and bothered enough by the throbbing heart that I have to get up. However, I'm relaxed and calm and ready to sleep when I go to bed. Breathing very slowly and deeply doesn't improve the throbbing. I do take magnesium and sometimes melatonin or tryptophan to help my sleep, but I don't have great results. The throbbing wasn't constant until a few weeks ago... when it's not present, I have little trouble falling asleep. Lately, I've had several nights where I slept either zero or two hours because of it. I have an appointment with a cardiologist in a couple of weeks and am considering calling Dr. Christopher Gibbons to get on a waiting list. I have a great life and little stress... I have an abundance of faith, a good job, a wonderful husband who is a nurse, and a comfortable home. I am not even anxious about all of this. I doubt it's something serious, I just want to enjoy being active again, and sleep well. It's come on so gradually that it almost seems like normal life, but then I ask myself why I don't want to hike, for instance... it's because I feel lousy soon after starting and just want to lie down. That's not me at all. I've been pushing through all of this for a long time, trying to maintain my life the way it was. I feel faint almost all of the time and would love to get rid of that, too. Today, I tried a crude test for POTS and came up negative. I laid down for 10 minutes and then stood up. I was already having particularly bad palpitations lynig there and my heart rate only went up 15 bpm after standing for a bit. I don't feel a whole lot better lying down except for that faintness feeling-that does improvement but the pounding heart does not. I do often feel like I -want- to lie down, though.
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