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Everything posted by RecipeForDisaster

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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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