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Everything posted by RecipeForDisaster

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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"
  7. 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.
  8. 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.
  9. 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.
  10. 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??
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. I'm going to ask about ivrabidine. Please tell me more about light! I do take 500mg magnesium nightly. What is the cold about?
  16. 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!
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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