Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Friedbrain

  1. I'm interested in reading about abnormal bloodtest results people here have had that are associated with their diagnos(e)s. I've been collecting my bloodwork results for 8 years as I've tried to figure out what's wrong with me, and there have been some "random" consistencies that I'm just now looking at in a new light that may be *really* relevant. 1) BUN levels are almost always high (and we're talking for 8 ys); if they're not, the calculated BUN/creatinine ratio is still high. As I posted in the vasopressin thread, I just realized that the meaning could have to do with low vasopressin and/or dehydration (ie related to water balance). 2) MCH is *always* high. Sometimes MCV is, too. I saw a mention on an older thread here that they may be increased in order to get greater oxygen around the body, but cannot find info on this. Since I have a problem with low blood pressure and postural hypotension, it might make sense (in my head, anyway), that the body would find a way to compensate. If circulation is down, then the blood cells that do make it around need to be carrying more hemoglobin....? Anyone know anything more about this? When my FP doc first was trying to diagnose me (8 ys ago), these results were why he had my folic acid and B12 levels tested (and they turned out to be off the chart high). I have other results that fluctuate between normal and abnormal, but these stand out. Sometimes MPV high. Thanks for thoughts. PS fwiw, my 10yo son had bloodwork done and his BUN is elevated (for adult stds, and child values are supposed to be lower), and his BUN/creatinine level is MUCH higher; otoh, his MCH and MCHC are abnormally low.....? Maybe a genetic predispostion to something and his RBC haven't made that adjustment hypothesized above? (His bilirubin is abn low, too, so maybe his RBC are hanging around extra long to compensate? weird). I'm having his bloodwork repeated to see if it was a fluke or real. As an aside, it's in my family tree to be very prolonged bedwetters in childhood, including me and both my children. Another sign that maybe vasopressin mechanism is defective.....?
  2. Oh, wow! I apologize for adding to my own post, but I think I just had a Eureka moment! In all of my blood work over the many years I've been collecting, I've always had abnormal BUN/creatinine ratios. Nobody ever commented on it-in fact, often the ratios aren't even reported. The creatinine levels are normal, but the BUN levels are either on the high side or high. (so even when my BUN levels were "within normal limit", the ratio was elevated because my creatinine levels are always perfectly normal). Since I try to investigate any abnormals (which also consistently include abnormal rbc values like MCH), I've been aware of it but never sure what it meant. Well, I think I know! So......does anyone else consistently have the same kind of result? My basic understanding is that creatinine is a good measure of kidney function. BUN, filtered in the kidney (produced upstream from breakdown of protein) can also be a measure of kidney function. The two values should be somewhat comparable as a measure of kidney function; ie, both should be proportional, hence the ratio. However, if BUN is elevated and/or the ratio is elevated, it suggests a possible problem above the kidney (ie, not the kidney's "fault" that BUN is proportionally higher than creatinine). Ta-Da!!! I found that the ratio would be higher in states of dehydration; but also if vasopressin is low, resulting in a decrease in water reabsorption. THat makes sense to me and fits....!
  3. Ancient thread that I found while researching this. Any new answers? I'm still looking into this water/salt/blood pressure balance thing. Had another bad night last night, again after eating peanuts before bedtime. I don't have problems during the daytime after eating peanuts (and don't know if it's directly related to the peanuts, as I've only begun taking notice of a possible correlation). But I definitely had a partial seizure last night as I was falling asleep. I woke up and couldn't move for a few seconds. Had several more minor episodes before finally sleeping almost upright. Anyway, was wondering if anyone has had their vasopressin tested. I'm supposed to go for a bunch of bloodwork for my endo, and am thinking of calling and asking if I can add vasopressin to it. Fwiw, I have an 8yr old diagnosis of adrenal insufficiency, and have switched doctors several times since then (moved). It's hard to re-test adrenal function once on replacement, so no doctor has really been able to re-assess that diagnosis. However, in hindsite, looking at the bloodwork with current info out there on the internet, I'm wondering if it isn't a defect higher in the circuit-either pituitary or hypothalamus. For example, one doc along the way questioned the accuracy of the diagnosis (I tried going off the cortef to re-test but had too many problems), and with current info on the internet, I can maybe see why: my initial cortisol level was soooo low that even though there was an increase (3x) with ACTH, the cortisol level never got very high. I asked my current endo about it, and she said that the stimulated cortisol was too low and supported primary adrenal insufficiency; info on the internet says that if it increases >3x, adrenals are able to respond, suggesting a problem higher up. There's a couple other results that question primary adrenal insufficiency, too. Anyway, her reasoning that it wasn't probably a pituitary problem made sense. However, the PVN in the hypothalamus makes both vasopressin and CRF (which ultimately increases cortisol), so maybe it's at the level of the PVN that my brain is busted? That's a long story for a short question, if anyone was interested...... Thanks!
  4. I really had a hard time trying to follow the low carb diet the cardiologist's office gave me - basically a one page xeroxed sheet. I had bettre luck (because it made sense to me) using the book The Spectrum diet by Dean Ornish. I still have problems preparing meals, however. What worked for you going on the low carb diet? I have spent days (my day = 4 hrs)searching on the net and it can get totally overwhelming. I have so many different things going on that I usually cannot tell that something is working well - everything is much more subtle than that. Well, I am not a cook nor do I have any creative answer for you. I don't remember exactly what I ate when I started out other than the pretzels and cheese mini snacks that I had between meals. Nor did I/do I follow a formal "diet". I had a diabetes counselor explain the concept, which is that simple carbs result in insulin dump and high highs and low lows of blood sugar, so I needed to eat multiple smaller meals, with more complex carbs, and to ALWAYS eat either/and proteins and fats with the carbs. My "diet" now is almost exactly the same every day, which is probably why it wouldn't work for many people, but maybe it could be a start. For breakfast, I start with the Slimfast low carb ready-to-drink drink. Around 9:30-10am, I have a Zone Perfect bar (caramel chocolate-for some reason, however they formulate it, despite the chocolate and caramel, I CANNOT get a sugar high from it. It's really amazing. In the past, I was guilty of trying to hyperfocus by using sugar with coffee in order to be super productive, but-and I've tried!-I cannot get that turboboost from these bars. Seriously amazing for maintaining even bloodsugar for me). It's the perfect non-guilty pleasure! Anyway, that keeps me until lunch. My lunch at work is a frozen Fiesta Quesadilla (sp?) box from Weight Watchers Smart Ones (I eat both quesadillas in the package). Or a giant chicken wrap from the cafe. For dinner, I make myself a wrap or two: microwave a lot of frozen vegetables (I vary the kind, but always with a lot of beans; so either I add in beans from another frozen bag, or I buy a veggie/bean mix); throw them onto the wrap and add cooked chicken (I buy it pre-cooked; did I mention I'm not a cook?) and cheese, then heat. I add on Thai peanut sauce. I usually do that every night because I like it and it's simple. But sometimes I make up a crockpot roast and then eat that for a few days with some carbs and veggies. I sometimes add popcorn at night, cooked in lots of oil. I don't know why it doesn't bother me, haven't researched it, but it doesn't and I like it I personally cannot drink fruit juices or eat much fruit-gives me the shakes. Sometimes I drink (along with protein like chicken) a little fruit smoothy that I make my kids, with yogurt, bananas and frozen fruit but that's it. I don't eat what I do now to lose weight. I eat it because I have found things that I feel better eating. I did buy a low-carb crockpot recipe book and hope to get more creative, but have yet to try it. Maybe a New Year's resolution
  5. Did you start everything at once? Back when "my head blew up", I felt this intense need to fix myself right away so I ended up starting a bunch of meds all at once. It was hard to know what was working or what wasn't, but I'd become very tired and it ended up being a mess to figure out. Maybe that's what's happened in your case? Fwiw, I had the ACTH stim test, and the results were abnormal, which is why I was put on cortef. The method for testing adrenal function is VERY important and, as I discovered, some testing places don't even know how to administer it. Because cortisol has that circadian rhythm, measuring it in the morning would show your "high", whereas if you measure in the afternoon, it will be lower. So time of day is important. When I had it done the right way, I had to actually go to the hospital. They had me lie down on a cot and took my baseline; then gave me the injection. I had to stay there for an hour; they came in and took blood samples at 30 and 60min post injection. Again, it only works if it's in the morning to show your peak, and then whether your adrenal is able to respond to the ACTH. Two questions being looked at. Oh oh oh! And maybe ask your doc why you're supposed to take it at noon instead of in the morning. That seems odd to me but I guess he has a reason....? The cortef did help pretty quickly. I'd been having a lot of postural hypotension, and it helped (altho I've been on and off fluorinef as an added boost over the years, but I don't like it and go off it as soon as I'm feeling better....my bad, huh?) As for the low carb diet.....I didn't have a hard time going on it, and really felt sooo much better on it that it wasn't hard for me. I've read that it's like withdrawal for some people, as the carbs can be addictive. But once over that withdrawal hump, it's supposed to be the same kind of feeling-more energy and just overall better sense of balance (healthwise). I am very boring in my diet because I've found what works and don't stray very often, but I'm happy with it. At first, I had snacks of cheese and pretzels (combine carbs with cheese or fats). Now, I drink slimfast lowcarb drinks (regular diet drinks give me the shakes) and the lowcarb bars (try different ones; some work for me and some don't) for snacks. I don't feel like I'm missing anything usually (except around holidays!) because I have such negative reactions to cheating. It's like electroshock therapy
  6. Sorry to add more, just re-read your post. Fwiw, my main dysautonomia symptom for the last few years would be hypotension, like you; and interestingly, I would say that fatigue and the flu-like symptoms had been a problem since about 13 ys ago, at least. So maybe there's a relationship. One thing that helped IMMENSELY was starting the low-carb pseudo-diabetes diet that I've been on for the last 10 ys ago. 11 ys ago, the fatigue was so bad that I basically lost an entire year of graduate school because I couldn't stay awake during the daytime. My eyes would just close and my brain would shut off. I was having ovarian cysts at the time, and also that on/off flu-like stuff. Awful time. Somehow I heard something that made me think of trying the diabetic diet. It wasn't hard, and I felt 1000% better not long after-it was like a magic bullet that I can't even describe. I had so much more energy and started losing weight without really even trying. I rarely even slip up these days-like 10 ys later-because I know how awful I will feel even just by thinking about eating that brownie.... Anyway, you may be right that there's a link that hasn't been found yet. I think there was/is for me.
  7. Well, I'm no expert with NMH, as I'm a newbie here and am still learning myself, and nothing I have to say may be relevant to your condition, but..... in the past, I have experienced periodic bouts of severe flu-like symptoms (no fever/flu). In hindsite, I realize the episodes spanned the time around ovulation. No doctor took me seriously (heck, I even had an obgyn pat me on the head and tell me fatigue is a common problem with women and not to worry about it), as I hadn't connected it at the time, and I could never get into a doctor *right* when I was feeling awful. It was worse in the evenings. At one point, because of autoimmune antibodies, my doc didn't want me on birth control pills so I went on the progesterone-IUD. Totally exacerbated my flu-like symptoms. I tried looking it up but found nothing. Thena new endo wanted me to taper off my cortef in order to test my baseline adrenal responsiveness...OMG, I got SO sick doing that-the absolute worst flu-like symptoms (no fever) that I've ever experienced. I remember crying at night over it. I was in tears over the phone, begging the obgyn to let me come in so she could take it out. I got it out and within a day or so was fine again. I know it's not in the textbooks......but it was my life! After experiencing that (I never did successfully taper off the cortef-way too much distress and I was happy on it; that's what happens when you move and a new doc wants to start testing all over again!), I tried increasing my cortef (which an adrenal insufficient person is supposed to do during stress and sickness) during a flu-like episode and the pain and symptoms went away. I see that you are on hydrocortisone, so maybe something similar is going on with you? I haven't experienced that in a looonnnnggg time, now that I think of it (knock on wood! of course, I still have problems, just different ones ) . I would say that was a problem I had in my early 30s. Also, fwiw, I take 10mg cortef in the morning and 5mg in the evening. There's a circadian rhythm to cortisol such that it's supposed to be high in the morning and lower in the evening, but maybe your level is too low? Just a thought. Oh, and sugar always made me feel more feverish during those times. (now it either makes my heart race or fall asleep, but it still causes me problems!) Good luck!
  8. So the new cardiologist said I have dysautonomia and need to take 4-6g salt/day. If there's anything I've learned over the last 8 ys with this medical mess called my life, it's to listen to my body instead of following a recipe. So I'm wondering if others have a sense of how their bodies feel when they don't have enough salt, vs too much salt, vs not enough water vs too much water vs just right. On Sunday, I did a tentative increase in salt by just increasing my intake. I drank beef broth, ate peanuts, etc. By bedtime, I was feeling tense, and felt scarily on the edge of a seizure (nighttime is my most vulnerable time). Any noise was making me startle, and I kept waking up with my heart racing all night (that's when I could fall asleep). It was NOT good. It could have nothing to do with the increase in salt, since that's supposed to help me. However, there have been other nights when I've had a lot of salty peanuts before bedtime and felt anxious like that and wondered about a possible connection. So....the next night, after eating peanuts, I felt tense like that again. I was worried because I didn't want another night like the one before, so I drank a ton of water. I kept going to the bathroom constantly. But by bedtime I felt better and was able to sleep. It occurred to me that maybe I'm not supposed to go to the bathroom so frequently when drinking water. However, it's hard to know if it's "too frequent" if it's what I do, ya know? What to compare it to. But it was ridiculous because I was spending the entire night going to the bathroom. How would that fit into the "picture", though? Would that make sense? Anyway, if I DO start salt-loading, how am I supposed to feel, and how do I know if I'm doing it right or wrong? Without any follow-up testing, that seems dangerous (especially since my head is so unstable now-I don't want to set my body offbalance in a different direction!!!). Thank you!
  9. My mom was initially diagnosed many many years ago with panic attacks. Then, 8 ys ago, I started having seizures. After medication, I experienced "breakthrough partial seizures" that were -surprise!-exactly like my mom's "panic attacks". Because the episodes were so much like my grand mal seizures, I never thought of them as panic attacks. I would wake up in the middle of the night (and always right before my period, called "catamenial"), heart racing, feeling of nausea, heat flash then shaking. (in the grand mal episodes, I was unconscious but dh would wake up) I encouraged my mom to see a neurologist, and she ended up on an AED (anti-epilepsy drug) and it helped her with the episodes she'd been having, too. When I was first experiencing all these problems, my FP doc did check for a pheo, but my urine catech were LOW. He didn't know what that meant (except that it wasn't) so sent me to an endo, who eventually did an ACTH stim test and determined I was actually Addison's. Low cortisol. (which I'm now second-guessing as to whether it's primary or secondary or tertiary, but that's a whole other story) And I'm now wondering if these episodes that you describe that I've experienced (which now are creeping into other times of my life, which really honks me off!) aren't more due to autonomic origin. So now I have a new diagnosis of dysautonomia, plus addison's, plus epilepsy.... Er, either my body is really messed up, or there's a common thread there somewhere....! Good luck!
  10. Most AEDs have side effects, so it is *very much* trial and error with this class of drugs as to what side effects you can tolerate vs benefit. Didn't tolerate depakote (and it didn't completely control my seizures). I take Keppra at a pretty high dose and it stopped my seizures for a long time; when I started having breakthrough partials, I added on lyrica (which is mostly used for pain control, but worked for me with the partials for quite a while). I still have low blood pressure, so these drugs, at least, didn't change that. hth
  11. I apologize for all my "little episode" questions, but I am new to investigating dysautonomia and am fascinated to find people who have experienced things I've been experiencing for (over, apparently) 8 ys. Something someone mentioned in another thread brought me back to my experience during childbirth of my first son, which was over 14 ys ago. It was induced, but during the transition, my entire body started to shake uncontrollably and SO intensely. My dh got into bed and tried holding onto me as tightly as he could because I couldn't stop shaking. Well, I just looked it up, and sure enough, adrenaline is involved in the transition stage, which PERFECTLY matches with the concept that I am hypersensitive to adrenaline, which causes the shakes, or even these shaking-type seizures (if that's what they are)! Wow, I'm amazed that no-one questioned it back then. I mean, I guess I was told that the "shakes" sometimes happens during transition. But d*mn, if someone coulda pointed out back then that I was being supersensitive to the adrenaline, I might've been better prepared in the subsequent years in dealing with it. It's only NOW that I'm starting to piece it all together, and I'm now taking over 10 pills a day in order to survive. It'd be nice if it could've been caught earlier. Not that I'm bitter or anything........ Anyone else have this experience?
  12. Thanks, Sara4. I went back to the cardiologist today, the one that is familiar with dysautonomia (vs my neuro and endo who have been treating me for a while....). My heart monitor does not show arhythmias (sp?), which I didn't think it would. He said he thinks I have dysautonomia and recommended up to 6g of salt a day (and water), spread throughout. He thinks the episodes after exercise are because of this. He said that what was happening was that the water doesn't stay in me. My blood pressure drops, brain perfusion drops, which could even result in seizures. Makes sense to me. He also thinks I'm hypersensitive to adrenaline (which I agree with, simply based on my reaction at the dentist's! but other times, I've noticed that, as well), so I should consider seeing a doc for a prescription for an anti-anxiety that would reduce adrenaline released (?). I get the concept, just have never heard of it worded that way (and I've taken a pharmacology class before). He said it's not that he's saying I'm an anxious person, but that my body over-responds to adrenaline released just like it's released for everyone. And that by taking an anti-anxiety, I would "smooth out" the body's physiological responses and make it less likely that I would have adrenaline-induced episodes. Like I said, this makes sense conceptually. Does anyone here take a med that does that with adrenaline? Most work through serotonin or norepinephrine, but I suppose they indirectly could affect adrenaline. I will have to research that. So, although I skipped working out again today, I feel very hopeful that it is something I will feel confident in trying again next week. Having him lay out steps I can take to try to get my health under control.....well, it helps a lot!!!
  13. {{suziebear}} What a trial to be going through all this with little kids! btdt with my own issues. They may or may not be similar, but I will share. Your symptoms do sound familiar to me, though. Dizzy, shaky, low bp. Yup. My health problems are related to my female hormones now, and I think it was involved in my onset. I nursed my second son for a long time. I was very slowly weaning him off, but went away for a conference-first time away, so my body was probably thrown by the lack of nursing. Two weeks later-a new ovulation-and whammo-neurological problems (multiple cranial nerve problems). Two weeks after that, I ended up in the ER because of neurological problems. My point being that probably my body was sensitized to the newly returning hormones and set off all this garbage. (although I'd had little problems before that) It hasn't completely gone away since, in terms of a monthly cycle, which is how I follow myself. Some "months are similar; some months are outliers. Use a calendar and write your symptoms down. You may also see a pattern related to your monthly cycle. For example, *usually*, during ovulation, I often have trouble urinating and then right before my period I have trouble sleeping from an overactive brain and/or breakthrough partial seizures (or waking up with heart racing, at minimum); throw in postural hypotension for good measure. Two months, when I was experiencing stress, I had a lot of tachycardia. This past month, an outlier (maybe because I set off a spell of seizures early in the month), it's different again. But I still see different sets of symptoms around ovulation and before my period. Days in between are more normal. I think in terms of getting through those bad windows. (for example, started my period today-sorry if TMI!-and I breathed a sigh of relief) What you describe, I've experienced. And it's MUCH worse on the rare days that I forget to take my anti-seizure medication. Basically, whatever changes happened in my brain back then made it very sensitive to whatever is going on with me (now I see an autonomic component that the docs never bothered to consider when they were throwing anti-epilepsy drugs or AEDs at me). Don't get me wrong-the AEDs really work! And if I don't take them, the smallest thing can make my head spin. They have been really great at stabilizing my head. Maybe that would be worth a try if many of your symptoms are neuro-related. Some things help, like eating a self-modified diabetic diet because I'm VERY sensitive to sugar. It's low carb, with protein and/or fats thrown in, and no candy or cookies. Sugar REALLY makes my head spin and heart race, and all sorts of bad things. Good luck!
  14. I don't know, but I'm interested in learning more about intracranial pressure. (ICP) Fwiw, I've experienced a CSF leak and it was AWFUL!!! After a lumbar puncture that didn't seal closed. I stayed in bed in the dark most of the time, but a few seconds after standing up, it felt like a jumbo jet had landed on my head. I had to go back to the doc for a blood patch. But I wonder if some of my problems aren't because of ICP that is too high (so I'm researching it, among other things). My initial symptoms (before my head blew up-the seizures), I had purely neurological problems that could have been caused by *something* pressing on the delicate nerves. I thought maybe inflammation at the time because steroids seemed to help. But if there was pressure buildup in my head, I seems logical that it could've caused problems with optic nerve, cranial nerves 3 and 6, nerves influencing balance...all these things were wacky at the time. "6th nerve palsy" (main diagnosis initially, before seizures, 8ys ago) "classic sign of raised intracranial pressure. Plus the ICP is related to the body's blood pressure (I don't quite understand it, yet; working on it!); and ICP can be lowered by raising the head of the bed (many of my problems are at night, and are improved by raising my head). Sorry I don't understand it all yet.
  15. Trainsboysmomrocks, I hear ya about working out. Since my last two workouts (over a two week period) were so scary, I am now afraid to go again. I skipped twice this week. I see the cardio on Friday-not sure how much he'll help but I will at least get some input since he will have cardiac data from those events. Gackedo, you may be right about temporal lobe involvement. I was in the hospital over xmas after having my status epilepticus seizures, and when I came home (after 4 days) I had no emotional memories. It was SO odd, looking around at my neighborhood, at my house, at the presents I'd gotten the kids, and felt like a visitor who had been there only once before. Familiar but no attachment or emotion. But I don't (didn't then, anyway) have an inherently unstable brain. Since my neuro at the time didn't know the reason for my seizures, I went to an epilepsy expert, who put me into the hospital for a 48hr VEEG. No problems. Well, away from the kids, no stress or movement, reading in bed for two days.... So the guy told me I didn't have seizures. My neuro had a good laugh over that, since she had seen me in the ER when I was unconscious seizing. Over time, it became clear that my seizures occurred during very specific times-right before my period, in the middle of the night. Jonathonireland, the episodes I call "partial seizures", in the middle of the night, seem like they could be autonomic to me: heart racing, feeling I'm gonna throw up, heat flash, shaking... It makes sense that there could have been some brain damage Now that episodes are invading my waking hours.....it becomes not only scarier, but more crucial that I control them. If they ARE seizures and I'm having them during the daytime, I could lose my driver's license! So I'm trying to understand the WHY. Blood pressure too low (why?), glucose too low (Why? like someone said, the body should manufacture glucose in response to it getting low) heart problem (or autonomic control of heart? and why?).... Thank you for everyone's input!
  16. OMGoodness, I want to know the answer, too! A few months after my "head blew up" (the big event 8 ys ago followed by assorted health problems ever since), I was still trying to get my health under control so kept having testing done. Bloodwork suggested "macroycytosis" (I just looked this up because I couldn't remember the details but wanted to give you accurate info , so the doc wanted to check to see if it was due to B12 or folate deficiencies. Instead: Folic acid was greater than 24 (3.4-24 normal) B12 was 1755 (normal 211-911) So BOTH were elevated! (and opposite of what had been expected) But since it wasn't low, he didn't worry about it. I've researched as to the implications of such abnormal results, but haven't found anything. Nor have I ever met anyone else who had had a similar result! I DO have problems with hypoglycemia (even before then), getting very shaky when I don't eat for a while, though. I want to remember to ask for it to be tested again, just to make sure it's not still abnormal; maybe it was a one-time thing. But since they don't know what's wrong with me, it seems reasonable to cover all possible abnormal bases! I have neurological involvement and people kept telling me to take my B vitamins because deficiencies can cause neurological problems.....but my levels were so high! I wondered if maybe my body stored it but wasn't using it (?) so I ended up with excess? One theory that I can't find support for, but I'll just throw it out there.
  17. I've had this happen! It was sooo scary because it was totally unexpected! They shot my mouth and then left me; I sat there feeling more and more like I was going to have a seizure, and nobody was around and I was too afraid to move and yet afraid not to move. I was later told I'd had a bad reaction to the adrenaline and that I needed to make sure to tell all dentists forever after that I can't have that. What I was told is that the adrenaline helps prolong the other numbing agent, so without it, they have to keep shooting me up repeatedly with the numbing agent. I'm not diagnosed dysautonomia yet, but my main complaint in the past was postural hypotension of the symptoms. Maybe there's a link there.
  18. Jonathonireland, thank you for your input. I agree that I'm not sure they are seizures (or primarily neuro origin), which adds to my concern because if something else is going on, I don't want it just passed off as a *shrug* seizure (which the ER doc had done a month prior). What I didn't add, cuz I was rambling on, is that I DO have a seizure disorder. 8 ys ago I ended up in the ER with status epilepticus-seizures where I was unconscious for a long time. I had breakthrough seizures twice, a month apart, at the same time of night: hence, nocturnal catamenial (right before my period) epilepsy. I continued having minor episodes periodically (exacerbated by daytime stress) at the same time over the years: woke up with racing heart, heat flash and pressure in head, followed by all-over body shaking. Since the timing was all so similar to the status epilepticus episode, it was always assumed to be seizures and the neuros have treated them (even the now-daytime episodes) as such. I hope that makes sense. They never did discover the cause (or the reason for all the other MS like symptoms which also, coincidentally, fall under autonomic control....). But knowing what I know now, I'm wondering if they are actually secondary to dysautonomia or some kind of blood pressure dysfunction. That's what I'm trying to get answers to. Unfortunately, this kind of question is out of my neuros' range of knowledge; and even my endocrinologist's, which is why I'm seeing this new cardio who is familiar with the disorder. Firewatcher, thank you for your thoughts. It makes sense, and I've been thinking about that. I generally have low blood pressure, though, and I'm so afraid of bottoming out. In fact, I used to take xanax for the middle-of-the-night shakes/seizures but I started feeling so weak afterwards-like my heart was barely beating and this was before I knew about all this stuff and that didn't seem logical-that I got scared of even xanax. I have had that very low pulse pressure that you talk about, too (when I woke up in the middle of the night with a racing heart. I wanted to take my blood pressure at the gym yesterday when I was feeling so awful, but they didn't have one.
  19. I am working on getting a diagnosis so this may or may not be dysautonomia. I have had a variety of neurological and peripheral symptoms over the years, but having problems exercising....well, that's new and scary! If anyone has any input, I'd really appreciate it. I have been exercising for about four years now, three or more times a week with the same routine: eliptical for 15 min followed by about 15-20 min weights. It usually made me feel great, worked out my stress, helped me. Lately, over the last few months, I started noticing I was a bit shaky after and craving popcorn...then realized it was the salt that was helping with the slightly shaky feelings. So I started adding full packets (2x) electrolytes to my water while working out, for the sodium; took care of my shakiness, no more popcorn cravings after. Then I went thru some stress, noticed tachycardia, went to the cardiologist, ended up on this heart monitor. Needless to say, by the time I got the heart monitor, the tachycardia was gone (still having nighttime heart racing, but that's old and ongoing, and different). However, I had been noticing an increased dizziness after working out, while driving home. Then, I worked out last week without any addition to my water, in order to (my hypotheses) invoke an episode for my heart monitor. I left the gym, felt okay in the car, started to drive away, then became dizzy, followed by my heart pounding, that transitioned into what was possibly seizures (I had already pulled over)(had them a month ago during the daytime-ER doc called them seizures with no testing that I recall)-all over ballistic type body shaking for about 30 min or more (dh was able to bring me electrolyte/water to drink). My right hand and arm and my left hand went tingly afterwards (?). Today, the first time since then that I was brave enough to go back to the gym, I had only half a packet of electrolytes in my water (the heart monitor did not catch the heart racing part of the last episode because of a malfunction, so I thought I'd try to achieve a moderate episode this time). What I noticed was that I was fine while working out. Heart going, breathing hard. When I went to get my stuff, though, my heart did not slow down. It was beating hard. I tried slow breathing but only got dizzy and shaky and had to sit down. Still beating hard. I had to leave (gym closing) so I took my stuff to car. After sitting again, not too dizzy but heart still beating hard and a little shaky. I was able to drive home (back roads, small town); when I got home (maybe ttl time 30 min) I couldn't feel my heart anymore but my body was "vibrating" (not large shakes) and both my hands were tingly (right worse than left(?)). Any thoughts on why this is happening? The sympathetic nervous system didn't shut down, maybe? Thanks for any input on any part of this.
  20. I can explain, if it would help: norepinephrine is a chemical that works by binding at receptors, resulting in a response. You can have an enhanced release to a stimulus..... or, for whatever reason (and scientists spend years studying all the reasons why , you could also have too many ("upregulation of") receptors so that a normal release has an enhanced effect. Fwiw, sometimes, an absence of a chemical (neurotransmitter or hormone) can result in an upregulation of receptors. Like if it doesn't rain enough anymore to fill your pail with water, you put out SIX pails so that, when it rains, you will collect enough water (combined-a full bucket's worth). Well, if it rains the normal amount, all of a sudden you have SIX times the amount of rain (way too much rain). Stupid example, but maybe that makes sense. (As an aside, years ago, when I started having neuro and postural hypotension problems, I had the 24 hr urine catecholamine measurement done, and the results were too low. norepi of 21 (norm 15-100), epi 0 (norm 2-24) and total 21 (26-121). The doc didn't know what that meant. So I wonder if my catecholamines, for whatever reason, ran low back then generally, but now, if something comes along to stimulate their release, then BAM!)
  21. <disclaimer: I'm only now starting to work on a possible dysautonomia diagnosis> but I have a PhD in a healthscience field, and have been researching my health issues for years, so I wanted to respond to a few comments in this thread. First: to the author of this thread-I am VERY interested in why someone would have problems after exercising! That's one thing I was searching for here. I started a heart monitor last week, so thought I would test an hypothesis: that I knew how to kind of compensate for my condition while exercising by withholding the compensation while I worked out, thereby provoking a "recordable incident"....and about ten minutes after working out, I started having seizures (or what the ER had called seizures a month earlier, which may have been a cop-out diagnosis, long story). Initially dizzy, then heart racing, then all-over body shaking for about a half hour....until my husband drove over to get me and gave me my "self treatment"-Salt! Several months ago, I had noticed that I would eat salty popcorn after working out to make myself feel better. So then I started supplementing my workout water with those electrolyte packets with the highest salt content I could find-and I felt FINE afterwards. Well, only drank water for my "test" and WHAMO (the reaction was a little more severe than I was looking for!). Secondly-hypoglycemia. I was told years ago that I had "reactive hypoglycemia"-that, at a low normal blood glucose level (like 60), I would feel sick and shaky. My guess now is some insulin resistance, such that I eat sugar, get a huge release of insulin in response that ***** sugar out of the bloodstream, resulting in crash (I either get the shakes, fall asleep, or both). Normally, the body compensates by releasing stored glucose into the bloodstream, but that that mechanism is defective (one time, I was feeling shaky from hunger right before getting an ACTH stimulation test...and then felt a whole lot better after the injection! Fwiw). I don't have diabetes, but I once had a diabetes diet counselor explain the diabetes diet to me and I went on my own version of it; lost a LOT of weight and never felt better. My understanding of why is that by eliminating simple sugars, and combining complex carbs with fats and protein (along with smaller, more frequent meals), my body has a steadier level of blood glucose and I don't get that huge insulin dump.
  22. Yes! ....but I am only now investigating a dysautonomia diagnosis, so this isn't much help to you, probably; but I'm glad someone else understands this. My WORST time is at night because my health just feels so unstable; sometimes laying down is enough to set off the dizziness and heart racing. My blood pressure is much lower at night when horizontal than even in the morning when I first wake up, so I think there's something about laying down *at night* specifically. It's really been bad lately, but I don't always experience it. Sorry I can't help more!
  23. Are there patterns in your variability? I am new to researching dysautonomia (which is why I'm here!), but I have read that blood pressure in general has a diurnal rhythm, such that it is lowest at night. If your "homeostasis" mechanism is busted, it would make sense that your daily highs can reach really high and your nighttime lows can reach really low. (don't quite understand why, yet, but I'm working on it
  24. I used to get recurrent bronchitis-colds that seemed to always go to my lungs. I've learned that steroids help clear this up before it gets too bad. However, in the past, I did not have so many problems with my health otherwise, so I can't speak to how prednisone could affect your dysautonomia. I'm not familiar with the dose you would be taking, but tapering off is important, so make sure to ask about whether you should reduce by half and then half again for a certain number of days, etc. That can minimize the post-steroid crash.
  • Create New...