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Everything posted by Friedbrain

  1. FWIW.......I've been working out regularly for about five years. My health tanked, and I started having problems after my workouts, too. I would feel weak and shaky. What I noticed over time is that salt helped me recover. (At first, it was because I'd go home every time and eat an entire bowl of very salty popcorn and feel miraculously better). I got those electrolyte packets from the grocery store that you add to water, the one with the highest sodium and lowest sugar content I could find (I always took a bottle of water around with me while working out to keep hydrated, but that apparently wasn't enough), and added an entire packet to one bottle of water. It helped immensely! I stopped craving popcorn when I'd come home, and felt much better. I tested my theory once, while on a holter monitor, by working out with simply water. Afterwards, I pretty much had a partial seizure (according to an ER doctor; don't know if that's what it was). I was weak and dizzy, then my heart started racing and I felt head pressure, then I transitioned into all-over body shaking. It was pretty intense and scary. My husband had to drive over and bring me an electrolyte packet and salty peanuts. I sat in the car with him eating/drinking until I calmed down. (I didn't go to the ER in that instance because I'd been to the ER for a similar daytime incident-don't know what triggered that one-a week or two prior) Long story short-when working out, I lose water and salt. I think I lose too much salt, which can really mess me up. I've been on and off florinef, but I didn't like it so I chose to try to add it to my diet when I can. I'm a work in progress on this, but I definitely know that adding sodium *while* working helps.
  2. I'm wondering if others here have had either the 5hr glucose tolerance test or the insulin tolerance test, and how they felt during it. I have a seizure disorder and, although medicated, I can still sometimes have what some doctors call (and some don't call) breakthrough partial seizures. Sometimes it's dizziness, sometimes shaking, sometimes when provoked like with the epinephrine before a dental filling it felt like my head was about to seize and I was afraid to move. The point being that even medicated for seizures and adrenal insufficiency (and hypothyroidism), I still have to be very careful with stress and diet (low carb) or I can have autonomic and/or neurologic problems. FF to new endocrinologist who wants to Make Sure I need medication for adrenal insufficiency, so she ordered a glucose tolerance test. The local hospital lab will not do it because it's too risky for someone with a seizure disorder, and I would have to be constantly monitored for the entire five hours, and they can't do that there. I would have to check into an ER for the test. Personally, I'd rather not have it done. I have a bad reaction to simple carbohydrates/sugar, which is why I"m on a low-carb diet. Eating cookies on a good day will make me sleepy and feel like my brain is shutting down (WAY more than "simply tired"). And that's not even with stress, which makes my reaction to sugar even more extreme. Have others here had either of the tests? I'm wondering what it was like for you. And then there's the question of whether I should be getting the glucose tolerance test or the insulin tolerance test. From my reading, it sounds like the ITT is more diagnostic for adrenal (and pituitary, if it's above the adrenal) problems than the GTT (I do NOT have diabetes). I'm disappointed in this new endo, anyway, because when I told her about my ACTH stim test (which was done years ago by another doctor in another state), I explained that I'd been getting shaky from hunger and that after getting the ACTH injection, I was no longer cold and shaky: she said that shouldn't have happened/didn't make sense so therefore I had expected it and willed myself to experience that. Er, no, usually nothing I do helps calm the shaky feeling except food when I've been without food (and relaxation if I'm feeling cold from stress) so I would never have expected an injection to do that. In fact, the nurse had gone to get me a blanket and crackers after the injection but I didn't need them by the time she returned (she was slow).... Thoughts/ experiences? Thanks!
  3. *raises hand* I have hand tremors, as well. It wasn't something I actually worried about for the longest time, kind of accepting them as just part of the cluster of problems that come and go. The tremors are gone unless I experience a high level of emotion. Sometimes it can even be positive emotion (like seeing an old friend), but *always* with stress. The worst part is that my job involves delicate fine motor work. When I was having some problems, it was making work difficult because I couldn't keep my hands still enough I found out that my mom has this too, though, and her neuro called it Essential Tremors, as others here have noted. And it can be a familial condition. I wish I understood why, or how to prevent/minimize them, but I don't. There have been a few times when I've experienced *extreme* upset, and then I've actually had the jerky/ballistic kind of spasms; one time, even poking myself in the eye while I was trying to brush my teeth through them (learned a lesson from that! Doh!). I don't know if that suggests that the tremors are a mild form of basal ganglia dysfunction that can worsen, or if the two are separate, or what. Just throwing that out there.
  4. I am moving from a small town to a large town, and I was SO EXCITED because I thought I'd finally be able to find a good doctor. Well, er.........No. I'm so frustrated I could tear my hair out. I spoke to both the Uni neuros' office and the suburban hospital's neuros' office, and both of them were like "sure, we have a doc for you", only to find out they don't. When I explained I wanted someone familiar with central AND peripheral neuropathy, ie the autonomic nervous system, I was given the name of a muscle neuro (gah, forgetting the name of that). I'm like Lady, Nothing is Wrong with my muscles!!!! I even chucked my pride and emailed a basic scientist in the town and explained my problem, and said that although I realized he was a basic scientist, since he TRAINED med students on the autonomic nervous system, maybe he could direct me to a doc who treated it. He was SO NICE and really considered my question and asked around, but in the end had to apologize, cuz there is no one who does that kind of clinical work. Same with the endocrinologist search. As I said in other threads here, I may be mis-diagnosed re adrenal problems, and really want a doc familiar with adrenal dysfunction. As with neurologists who specialize in brain and forget the rest, most endocrinologists are diabetes specialists and forget everything else over the years. So I specifically asked the Uni office for a doc who knows adrenal dysfunction. After 20 min on the phone, even with me ASKING who they were thinking would be a match, it took that long to get a name-they told me who the appt was with. I said "his name isn't on your website"; they said he's a doc there and sure he knows adrenal gland. Well, I googled him later, and he's a newbie out of another city, who just finished up research on obesity and diabetes. I had told that receptionist I don't know HOW MANY TIMES I don't want a person who specializes in diabetes. So ticked! I spent a half hour today calling a couple different endo offices in the suburbs and trying to find someone sooner (heck, if I'm seeing an endo who can't help me, why wait two months to find that out?); scheduled with one much closer much sooner. My guess is that she won't be much help, so I'm going to keep my other appt just in case, and I can ask her opinion or maybe call and find out more about the newbie when I get there. It's always possible that he's young enough that he hasn't forgotten everything else he was taught in his specialty. Dang doctors.
  5. I think it's because it's not their "bread and butter". They can live quite nicely on diabetic patients, and it requires very little thinking on their part. Having to work extra to keep up on other endocrine issues in order to treat difficult cases like us...well, they don't have to. Just like a neurologist "doesn't have to" remember anything about the autonomic nervous system even though it's a neurological (central AND peripheral nervous system) dysfunction. How did your doc look at catecholamines, and what did he decide was going on? The first endo measure was a 24hr urine test my fp ordered in order to look at epi/norepi levels. My epi was nonexistent and the epi/norepi combined level was significantly low (opposite of what he expected, so I was sent to the endo, who later diagnosed "adrenal insufficiency"). Nobody ever mentioned that epi/norepi result again or what it meant, if anything. I seem to now over-react to epi (adrenaline), so wonder if my body has become sensitive to it from mostly lacking it? I don't know, just an idea.....
  6. Ha! Me too! Guess my body liked actually having the ACTH for once! Make sure the place administering the test knows what they're doing. Many places don't, I have discovered. It's critical that you are doing it at a specific time of the day(time depends on what your doc wants to look at), as cortisol levels fluctuate, with the peak in the morning. Basically, what he's concerned about is the function of a specific stress pathway in your body, the hypothalamic (ie starting in the brain)-pituitary-adrenal axis, which when activated, results ultimately in the increase in circulating cortisol levels. There can be dysfunction at any of these levels. For this reason, baseline levels of ACTH and cortisol, at minimum, should be assessed. Then, the ACTH (or mimic) is injected in order to see if your adrenal is CAPABLE of responding (30 and/or 60 min later) by measuring cortisol (and aldosterone, in my case). I get shaky when I get hungry, and I was waiting so long for the hospital to get set up to do this test that I started feeling shaky. A little after the ACTH injection... felt SOOO much better! Good luck (hey, what a great idea to research-the ACTHpen! Just a little jab and then, ahhhh)
  7. All very interesting reading! I'll share, tho I think I posted my numbers elsewhere, too.... I had sudden (two month window) onset of neurological problems that resulted in ten days (over 2 visits) of hospitalization. After that, on seizure meds, I was still having problems including severe fatigue and postural hypotension. Endo was consulted, and a 24hr urine test was done to measure catecholamines. Norepi was normal, epi was ZERO, and the combined epi/norepi was abnormally low. So I was sent to the endo cuz fp didn't know what to do with me. So endo gave me the ACTH stim test. My cortisol numbers were (at 0, 30, 60min) 6, 19, 16. ACTH baseline was 15. Aldosterone was 13, 18, 15. The endo said it was borderline Addison's, called it adrenal insufficiency and started me on 10mg am/5mg pm cortef. I felt MUCH better on it, so that was that. I responded to treatment, so everyone was happy, the End. Or so I thought. (also, I've been on and off florinef over the years to help with the postural hypotension and salt cravings, but I didn't like it much and gained weight, so as soon as I would feel better, I'd go back off it) That was over 8 ys ago, and I've reviewed those results with new knowledge out on the web (prompted by the fact that I'm having even more problems), and wonder if that was a correct diagnosis. Here's my thinking: if it had been primarily adrenal "insufficiency" (or whatever), ACTH at baseline should have been elevated (which it wasn't!). Based on what I read, I think a possible interpretation suggests atrophy of the adrenal gland from prolonged lack of stimulation (ie, dysfunction at the pituitary or hypothalamus, secondary or tertiary), so that function was(is) low, and when stimulated directly with ACTH it was capable of a feeble attempt to respond (cortisol increased but not above 20, and aldosterone did not even double from baseline). Unfortunately, I've been on cortef for so long that it would be hard to re-test me. I tried going off cortef once cuz a new doc wanted to do that, and I just felt AWFUL, started getting dizzy spells and couldn't do it.
  8. Is it good enough to just take a multi-vitamin? I sometimes take a multi-vitamin when I feel shaky at night in case some deficiency is contributing. I have a seizure disorder, and one of the causes (or, presumably, contributor) can be vitamin B deficiency. I don't take supplements because there are so many that seem like they would help and also because I am never sure of doses. I hope I'm doing good by taking the multi-vitamin but my dh was telling me that studies show they don't help......?
  9. Yes to almost all of the above. I actually started with "obvious" MS symptoms and have arrived at this board, 8 ys later, wondering if it's not all due to autonomic issues. I don't have answers yet, but I recognize many if not all of my problems in the description of autonomic dysfunction. I'm still trying to find a doctor who remembers enough about the ANS to look at me. Sorry if this is a repeat, but 8 ys ago, my problems started with balance and vision (due to the inability to move my eyes-cranial nerve problems). After initially ruling out stroke (I was in my mid-30s, tho I have anti-phospholipid Abs, so it was a realistic possibility), they thought MS. As they were testing for that, I ended up in the hospital and during my stay I had trouble swallowing and urinating. They REALLY thought MS by that point, but NONE of the MRIs or lumbar punctures supported that diagnosis. A month later, while still experiencing the vision and balance probs, I ended up having status epilepticus, so they were like "Eureka! Something we can treat!". To their credit, they did more testing while I was in the hospital, but no reason ever showed up. They sent me home with anti-epilepsy drugs. I was supposed to follow up with the urologist who saw me in the hospital, but my ability to urinate improved so no need. All the MS-like symptoms-no one had a clue! I had MRIs yearly for a few years, but none ever showed lesions, so they figured I was in the clear as far as an MS diagnosis. At that time, I was starting new drugs, so don't know if it was the drugs or my health, but I was VERY tired. I ended up doing the doctors rounds for that, and my FP doc adjusted my thyroid med, and an endocrinologist suggested I was adrenal insufficient and put me on cortef. Between all those meds, I made a turn-around and started feeling better. I've had minor peripheral symptoms over the years, but nothing severe enough (like trouble urinating, but not completely unable). I did once make an appt with a urologist during a "spell", but by the time I got in, I was better. I did try explaining it, and he said it sounded like a neural problem...which I figured, but there wasn't much he could do since I was asymptomatic at the time. Sigh. Last Fall, while under stress, I started having daytime tachycardia, and an episode of shaking scary enough that I ended up in the ER. I've been having a lot of peripheral problems lately that fall under autonomic dysfunction, and have been trying -but failing- to get a doctor to help diagnose them. Anyway, in short, yes. My peripheral symptoms were at one time thought to be MS; docs now try to ignore them..... (like my neuro last Friday-"take these pills and call me next week") (As an aside, my symptoms are WORST before my period. So, for example, I had my first episode of cognitive failure on Friday, but my period is starting today so of course I'm feeling better. That doesn't mean "I'm all better", because I'm gonna have another pre-period next month, too, doh!)
  10. Lieze, {hugs} You are always so helpful, so I'm sorry to hear you're feeling so overwhelmed. I'm going to share some thoughts I had while reading your post, as a different perspective, not to say that you're on the wrong track. 'k? I've experienced many of the same symptoms that you mention, and it's quite possible that what mine are due to are unknown allergies, too. However, I've been looking at different possible explanations, interestingly enough. So here's what I thought they were due to, and why. First, I've had stabbing pain in my chest that I thought initially was cardiac, but I experienced them while on the holter monitor and the cardio said they weren't. Sooo, a short while after that, I noticed the pain occurred after taking my pills, like maybe they were getting lodged. Around that time, I was having terrible problems burping. Sometimes, I even noticed the pain with swallowing saliva. (This was an intense few days of problems). Finally, one night, I got meat stuck midway down my esophagus and knew there was a problem (and yes, when it did get stuck, I initially panicked only to realize I could still breath, and I had to make myself breath with the food still there-very strange!). The FP did immediate testing to rule out a hole (if there was a hole, food could leak out midway and I'd die), then sent me to a GI. The guy wanted to scope me out. I made the appt but got better. It's not the first time I've had swallowing problems, as I had them around the time my head blew up. So I'm thinking that the swallowing (higher up in the process) and chest pain (which appears to be a swallowing problem further down in the esophagus, I'm thinking now) are probably neurological (which could be autonomic? Still looking into this) My jaw also gets paralyzed, or "stuck". Don't know if it's the same thing, but sometimes it will not open more than an inch or two, in fact all night tonight! It comes and goes, but when it happens, I can't eat or I have to push food in through the little opening. I don't know why it happens, although I'm researching the possibility it's also a cranial nerve thing (trigeminal?) It happened before I ate, as I was about to eat, so I don't think it was food-caused. On a sidenote, the face-swelling that I experienced that I thought may have been food-related allergy......I'm wondering about. I just saw that swelling of the facial nerve can result in swelling above the eyes, in the cheeks and around the mouth, *exactly* like my worst experience (I've had milder versions that only affected above my eyes or around my mouth). I don't know what I make of all this, except that I suspect my cranial nerves are not the happiest campers. And it's not like I'm going out on a limb here-I've had severe sixth nerve palsy with mild involvement of other cranial nerves (when my head blew up 8 ys ago). WHY is my important question. The elephant again. What's its name? I can label lots of limbs but don't know the elephant's name Anyway, to summarize, I *think* I maybe am experiencing some of the same symptoms, but am looking at them differently. That's NOT to say what you're experiencing is not caused by food allergies, but just food for thought (is that an ok pun?)
  11. Anxiety can definitely make symptoms-ANY of my symptoms-worse, so try to find some ways of giving yourself some TLC (this from an expert stresser, so I know how hard that is, especially when you can't control the stress!). I've been trying to find ways, too-like hot tea (I'm not a big tea drinker, but I do find it slows me down to drink some), or a hot bath. If you would like, you could share your adrenal challenge test results with me, and I can tell you what I have learned. There's a lot more on the web on how to interpret those results than back when I was first diagnosed with adrenal insufficiency. http://en.wikipedia.org/wiki/ACTH_stimulation_test is a site that I found to be REALLY interesting to use while comparing my old stim test results. 8 ys ago, my endo said it looked like maybe my borderline results were supportive of adrenal insufficiency so put me on cortef, and I was like a New Woman. I've been on it ever since, and I can't seem to go off it (which a new endo wanted me to do in order to re-test for herself) without all sorts of horrible symptoms returning. Anyway, while the guy said my results were "borderline", when I look at them in terms of the whole picture instead of a cortisol level that only kinda increased, what *I* see is a possible misdiagnosis!!!! My baseline cort was LOW (6) and tripled to a low of 18 when stimulated by ACTH. If you ONLY look at one result (er, which you shouldn't), it may look like a borderline response; however, if the doctor bothered to note that my baseline ACTH and aldosterone were ALSO low, and that my aldosterone level did not even double.... the interpretation based on that information suggests that it may be secondary or tertiary failure with atrophy of my adrenal gland. And THAT makes sense. Anyway, I don't know your doctor, but I have years of experience trying to find endos familiar with adrenal dysfunction (and failed) because of my multiple moves....MOST endos do not have expertise with adrenal glands because they have spent too many years treating their moneymaker-diabetes. So in this case, it would be in your best interest to double-check the results yourself, and then talk to the doc about them. I wish I had back then. (I need to make a list of things to ask my new doctors when I find them after moving!) Also, fwiw, my mom started having middle-of-the-night "panic attacks" when I was in college (in her early 40s). In my mid-30s, I started having middle-of-the-night seizures that, once somewhat controlled by anti-epilepsy medications, started resembling her "panic attacks". Mine weren't "panic attacks", and neither had hers been. It's an easy diagnosis for unknown events, sometimes
  12. I haven't been ambitious enough to take my bp in the middle of the night on a routine basis, but I did research that uncovered what I'd suspected-that bp does have a dip around that exact timeframe (which is usually when my nocturnal seizures and shaking spells were). I was working from an hypothesis that my seizures (and shaking spells) were maybe caused by my body going into some kind of shock-not getting enough blood initiates a big boost of adrenaline which overstimulates my poor unstable brain (estrogen>progesterone, see my other post about hormones) and blammo. Actually, and I can't find it right now, but I found a study that showed that bp dipped even lower at night and that supported my hypothesis that my bp may dip even *lower* at the end of my cycle, such that maybe my bp bottoms out during that time triggering the adrenaline that then overstimulates my vulnerable head. A chain of bad events.... Complicated, I know, but it's probably not something simple, or it would happen to a lot of people.
  13. Firewatcher, thank you for the description. I'm going to print it out and ponder on it. I love the visualization cuz that's how my brain works (when it works lol). I want to understand it so that I can continue putting pieces together! Lieze, it does Isn't that weird? I didn't use the short-term anti-anxiety because I had calmed down by the time I got home. I have a teenager at home, but I did talk to a neighbor/friend in case we needed her to come over. She's a good enough friend that I could ask her to sleep over. If I had still been shaking last night, I would have. Thanks for asking. It's just when I'm borderline that it's a hard call because I can never predict how my nights will go.
  14. Oh, goodness, I'm scared about this! KCmom, I'm glad to know it passed for your son! You guys described what the last two days have been like, the two different kinds of cognitive problems Yesterday was more of doing stuff on autopilot and not knowing what I'm doing and then realizing I don't know what I've done.... I thought I was feeling better last night, but today I've been having trouble remembering stuff, and it's kinda freaking me out! And believe me, I know freaking out will NOT do me any good, so I'm trying really hard to stay calm, take slow breaths, not think about it (haha)... But several times today, in talking with my dh over the phone, I've forgotten what I was going to say and when I tried to think of it, I started feeling an autonomic response. It felt like it wasn't from fear but from effort, if that makes sense. Just simply trying would make me start feeling warm with butterflies in my stomach. And of course, I couldn't remember. I hope this goes away!!!! I'm hoping it's because it's before my period, and that it will get better as soon as my period comes! Thank you for sharing your experiences, though. I'd rather know I'm not alone and that this makes sense than to think I'm going crazy or imagining it (haha! At least I haven't lost my sense of humor)
  15. From my reading and experience, it seems like dysautonomia and MS symptoms can overlap quite a bit, because they both affect the central and peripheral nervous system. Like Issie said, I would suggest getting the MRIs just to make sure because, as I'm sure you know, the earlier the detection/treatment of MS the better. Fwiw, I'm coming from the opposite direction. At the beginning of all my symptoms, neuros were pretty sure it was MS, so I had tons of MRIs and two lumbar punctures, but nothing ever came up positive for MS. I even had yearly MRIs for several years as a precaution.....still nada. What were you doing right before the episode started? Fwiw, it sounds like a complex partial seizure (not that I'm a doctor....). But here's the thing. I have severe shaking/jerking episodes that various docs have called seizures and called undetermined, so I am confused about whether what I experience (which is different from my grand mal seizures, which *I* haven't seen, as I'm unconscious during them, but are apparently pretty obvious to diagnose per my husband). AND I had one just the other night that was VERY clearly set off by eating, which makes me wonder if it wasn't an autonomic problem. Ie, if the autonomic nervous system responds to food-rest and digest, right?-could an overresponse set off a cascade of events resulting in the jerking/seizure? I was feeling what you describe-off, with head pressure and like I was on the edge of having a seizure. I was hungry so I thought if I had a little food with vitamins, I would cover a couple bases, so I had a carb-control drink (not too much sugar that could also potentially send me over). A minute or two after finishing the drink, I started getting cold. Then REALLY cold. I was going to crawl in under my heater blanket so tried to get ready for bed quickly but then started shaking/jerking uncontrollably. It happened really fast, much faster than usual, so I think it was pretty clear to me what had triggered it. It still coulda been a seizure, but triggered by my defective autonomic response, or involve the ANS..... I used to think seizures were a diagnosis all by itself, although I should know better since the neuros could never tell me WHY I was having seizures. So it makes sense that something else (dysautonomia or MS) can cause them. (I don't have a neurological instability, so something is causing them) Hugs! I know how scary those episodes are when they're out of the blue! For ME, getting testing done and ruling things out is better than not knowing.
  16. A really great link that may help you understand hormone fluctuations in relation to symptomology: http://professionals.epilepsy.com/page/catamenial_patterns.html While it is an epilepsy site, it has great diagrams of hormone changes across the month, and explains how differences can be related to problems. I learned about this 8 ys ago, when I realized that my period started in the hospital BOTH times I was there, a month apart! Ie, brain blows up, then tada period starts.... So almost from the start, I was aware that I had catamenial epilepsy. And over the years, I've noticed constellations of symptoms associated with different parts of the month. In short, estrogen is "proconvulsant", or excitatory in the brain, whereas progesterone is counter that. So, at the end of the month, when estrogen is still elevated, my progesterone drops, leaving my brain more vulnerable/excitable. For this reason (thank you internet support groups), I took the baby birth control pill that was progesterone only, and it did help calm my brain during that time. A stoopid doctor I went to after a move scolded me and told me to get off it (wasn't clinically proven etc). Maybe I should go back on it....! And I have, in fact, had problems with progesterone. I had an early miscarriage, and during a subsequent pregnancy, found out that my progesterone was too low to support pregnancy, so had to take progesterone supplements during the first trimesters of both my (successful) pregnancies. I also sometimes have problems during ovulation (different ones usually, like trouble urinating), which maybe happens because of the dramatic increase in estrogen without enough progesterone. I'm trying to be more diligent about tracking my other symptoms. It's quite logical that during months when my symptoms "are outside of their normal window", it's maybe because my progesterone simply isn't high enough at all see Fig. b. Heck, typing this, I wonder if I should see an OB/GYN and have my female hormones checked. Fwiw, it was a reproductive specialist who first discovered it, not my normal OB.
  17. Well, I don't have answers because I have similar problems at night. I raise my head, and I do arm exercises to "jumpstart" my system. But as for what blood pressure works and doesn't work.....I can say that the same blood pressure during the daytime, 90/60, will work for me most times but give me a little stress and I'm ready to pass out at the same bp. Don't know why. What problems do you have at night? Most of my problems are at night, and I'm still trying to figure out if they're due to the drop in bp.
  18. I've read posters comment about brain fog from dysautonomia, but I kinda assumed it was like walking around fuzzy all the time, which I certainly have never experienced. I've had over 8 years of neurological problems and can't say I've ever had problems with my memory (well, except for the time I woke up from having status seizures, but that's different). I DID today, and I was shocked when I realized what was going on! And scared a bit, I guess, because it seems like a whole different level when my brain is slipping some gears and I can't control it. So here's what happened, and you can tell me if it sounds like anything you recognize. I woke up from a heavy sleep and turned off my alarm, thinking it was the weekend. Son woke me up. Made it to work and, like I have for EVERY workday for the last three years, went to make coffee. Went to get some coffee, only to realize I hadn't added any water. Mystified, I went and got water and poured it in.... Then at some point realized I hadn't cleaned my coffee cup, which I ALWAYS do when I get water (I just realized I must not've even gone to the bathroom with the coffee pot at all, but at the time I was confused because I thought I had gone to the bathroom with the coffee pot). Cleaned the cup and went for coffee....only to realize I hadn't turned the coffee pot back on. At that point, I was like "What the heck is WRONG with me!!!!" in a rhetorical sense because I was just being so spacey. Then two hours later, I was shaking which proceeded for hours. Highly unusual. Right before leaving for my neuro appt around 2:30, I went upstairs to do one last thing, and found myself walking down the wrong hallway. It was then that I realized that something was wrong with my mind. And in hindsite, I think I've been doing smaller things (like walking into a room and forgetting why I was there) all week. Doing the "doh" thing, thinking I was just too busy or something and 'not thinking', but today's mistakes were really glaringly Wrong. I asked my neuro about these things, because it occurred to me that maybe they were absence seizures (because I have a seizure disorder). My neuro said no because that would mean Lost Time, which I didn't have. I was moving, like on autopilot without my brain engaged somehow. He didn't bother telling me what he thought they COULD be, though (can you tell it was a worthless visit! ) Thanks for thoughts!!!
  19. I've seen many threads where people have commented about raising feet during "spells" so I'm asking for more specific details about why this helps. I think I understand, but it was so freaky to experience it so clearly today. I started out having really strong tremors/shaking around 11am today, and by 11:30 my fingers were numb and I was dizzy, afraid I was going to tip into seizures. I ate some low-carb food and felt better (feeling back in fingers is positive progress) but decided to try the feet-above-head thing I've read about here, in order to stop the shaking and dizziness. So I went to my secret couch (it's a university building, and there's one hidden in the basement women's bathroom! ), and put my feet up a few inches and laid on my back. After about five minutes, the shaking completely subsided. On a side note, something happened that I've noticed before when doing this, is that it feels like gravity is sucking all the blood in my head to the back of my head. Even the sides of my eyes feel like they're being tugged back. I did a brief cranial nerve check, and found that my horizontal gaze felt a little sluggish and my tongue was jerky when I tried wagging it to the left, but not right. I've had cranial nerve problems in the past, which is why I'd even think about it. Anyone ever feel this? (I wonder if it also has to do with blood pressure-intracranial bp, to be specific). Anyway, whenever I tried sitting back up, I would start feeling a little shaky again, and whenever I stood up, the shakiness and dizziness would be right back. Soooooo? I didn't know my bp cuz I was at work. I usually have low bp, and occasionally have periods of postural hypotension, but I wasn't today. It was definitely something else going on. Thanks for thoughts!
  20. I have been having a bad week, full of bad symptoms, so I apologize in advance for the multiple different threads I'm going to start.... I normally have low blood pressure. Typically around 90/60 or a little above that. (strangely, depending on my stress level I think, while I'm usually fine at that, sometimes I experience postural hypotension). Times I was hospitalized for seizures and when I've been shaky, I noticed that my blood pressure was "high" (ie, for me). So this week, I've been taking it during my spells and have noticed that during shaking spells, my blood pressure increases to "high" but my heartrate does NOT increase. (and this is surprising for me to notice because when I'm shaking so bad, I was assuming my heartbeat was also increased. There are spells that occur after tachycardia, but these tremors and ballistic-like shaking have been kinda spontaneous) So, for example, two nights ago, watching tv and a spell came on, starting with being cold then ballistic shaking (poked my eye with a toothbrush because my arms were flying jerkily; note to self-don't try to brush teeth during these bouts!). My blood pressure was 121/82 with a heartrate of 72. Today, after working in the yard doing heavy work, my bp was 114/74 with a heartrate of 75 (and that may have been elevated because today was a bad day, too). One time during a shaking spell (not ballistic, "just" all-over body shaking), I did some arm pumps to get my heartrate going because that usually helps me then calm down, my blood pressure was then 115/82 with heartrate of 69. As a sidenote, I exercise a lot (more in the two years before Nov, when I started having problems after exercising, but I still do) and am in excellent shape, so I guess it's not unusual that my heartrate doesn't increase that much with effort, right? Anyway, I do NOT understand the relationship between bp and hr, but here's my theory that I'm proposing, and asking for feedback: during a VULNERABLE TIME (ie, not always; the condition has to be right, whether I'm experiencing a lot of stress, or it's right before my period like now, maybe) something happens that stimulates a release of adrenaline and my bp reacts but my heartrate DOESN'T, so wouldn't that be bad? And in what way? I'm trying to picture it. That time I went to the ER (Oct/Nov when it was bad) and the nurse scolded me for hyperventilating when I wasn't. If my blood vessels were constricted to push blood through my body but my heart wasn't pumping any faster....wouldn't that make me lightheaded (and therefore dizzy)? And the shakes....either in response to that, or overreaction to the adrenaline? I. Don't. Know. And I wanna cry. Sorry. My dh is out of town and I'm so tired of being afraid. I THINK I know now that I'm not going to die in the middle of the night, but it's just so dang scary after a day like I had today. ANY thoughts are appreciated. I even got in to see my neuro today during the shaking because I wanted answers! and he simply prescribed another anti-anxiety pill . He was evasive about what was going on, and told me to call him next week with how I'm doing Thank you!!!!!
  21. Question for you-did you get a worsening of symptoms after you had your son, and was it after reducing or stopping nursing? The reason I ask is that "my brain blew up" (what I called the time when almost out of the blue, my balance went, my ability to move my eyes stopped, and I went on to have seizures including status epilepticus), all within a two month span, when I went down to night-nursing. This was after I'd been nursing my son for a while, experienced some stress and slowed the nursing down to only at night (he was two), and started a new menstrual cycle. What I suspect happened is that I'd been running on reduced hormones for so long that when I got my hormones back, it was like BAM to my system. In scientific terms, an upregulation of receptors because the hormones were low, and then all of a sudden it's like a flood. During that two month window, I had two ER trips that resulted in a total of ten days in the hospital while they ran all sorts of tests because I couldn't walk without holding the wall, I saw double and my horizontal gaze was gone (6th nerve palsy-one name they DID give my symptoms), seizures, and a variety of peripheral problems that they thought were due to MS, tho I never tested positive for it. You know, {{{{hugs}}} because now that I think back to that time, I get chills all over again and I just realized what you must be going through, with a young child and having such serious health problems... If it helps, I've btdt. It took time to find medicines to address some of the problems, and some of the problems simply went away (and yeah, they come back now and then, but I know I can live through them, and I do). And yeah, eight years later, I'm still struggling to find answers, but I'm alive. I guess it's good for me to remember that. Oh, and my symptoms continue to be associated with my menstrual cycle, fwiw. Definitely. You might try keeping a calendar of your cycle and writing your symptoms down as you go. It took me a few months to notice the pattern, but starting my period in the hospital two months in a row was kinda obvious after the fact.
  22. I've had a few rounds of difficulty swallowing, the first being when I was experiencing severe neurological problems. Initially, I wasn't on any meds (the meds came about because of the neurological problems). Because of the brain stuff along with peripheral stuff (swallowing and urination probs), they guessed it was multiple sclerosis. They threw every test in the book at me for that (MANY MRIs, two lumbar punctures, several years of repeat MRIs, etc), and never came up with clinical test results to support that. So I was left without a diagnosis (well, seizure disorder and let's sweep those other symptoms under the rug cuz we don't know what they are....). It's only now that I"ve been thinking that the combination of central and peripheral nervous system problems match dysautonomia better than a variety of diagnoses. Anyway, that's the long way of saying that I also have had bouts of swallowing difficulty and they weren't associated with taking florinef. That's me, tho. Good luck figuring it out!
  23. Have you tried it? I have and I think it does. Maybe sometimes. But it's only anecdotal, and I will explain. I have a seizure disorder, one that used to be nocturnal grand mals but I got them under control with medication. Then I started having "breakthrough" partial seizures (same time of night, same time of month-related to hormones) that I now see are very similar to autonomic activation. They start by waking me up with heart racing, proceed to nausia and head pressure buildup, heat flash, and then all-over body shaking. When I recognized this, I was given xanax, and it WORKED! Onset was around 15 minutes after I started taking it, but I just felt an over-all sense of calm and it was wonderful. And since stress increased my chances of having nocturnal seizures, I would take xanax before stressful events like public presentations and such. No problems. BUT. That was at the beginning. This past year, symptoms have worsened, both seizures and the autonomic component. I have low blood pressure anyway, and there have been times at night where I've felt like it was going to simply Stop. There was a sense that my heart was so slow that it was petering away. I wish I had taken my bp at those times, but I didn't. Anyway, there was a night when I took the xanax and it calmed me down so much that I had a real fear that my heart was going to stop. My husband was there, and I woke him up and made him stay awake with me because, heck, when the heart stops, there's nothing I can do about it myself. Breathing faster wasn't going to fix that! Totally out of my control, and that was scary. I haven't taken xanax since then because I'm too afraid. However, I had a daytime episode (which was highly unusual) a few months ago so the Medcheck place sent me to the ER (I'm guessing he thought I was having a heart attack because my fingers were numb). They loaded me up with ativan there and I didn't have that problem. I had others, tho....! Ativan made me very loopy, with the walls spinning and everything. They sent me home with a script for it, but my neuro said to stick with xanax, as ativan is longer lasting and stronger. So that's the longer version of "maybe". I think I'd probably be ok taking it during the daytime when I don't usually have cardiac weirdness, but I'm now too afraid to take it at night. Because of ME. YMMV!!! Before I had feelings of heart slowing down on its own, I did not have that problem with xanax.
  24. I also have a low body temperature. One theory is that I have (Hashimoto's) hypothyroidism. I take thyroid medication, but since I still have some of the 'typical' symptoms of hypothyroidism (like being cold easily, etc), I'm not surprised or overly concerned about it generally. But, like you, I feel feverish periodically but am rarely if ever running a fever per my temp. A few things that I've noticed that can exacerbate or bring on the feeling of feeling feverish: a) sugar. Although my usual reaction to sugar is fatigue or shakiness, sometimes it's a feverish (in my head) feeling, and salt can sometimes reverse this. b.) OVULATION! For a few years, I would feel awful during ovulation. My best guess (this was about 17 ys ago, so a long time ago) was that it was an autommune reaction so I wanted my rheumatologist to do the blood workup when I was feeling bad (I was followed for a while because of some positive, lupus-like results). Nope. Nothing triggered his alarms, so I never did figure out why I often felt feverish during ovulation (but I have all sorts of symptoms come and go, specific for a certain "time of month", so I'm sure it was related to hormones, just don't know what) OH! But I did discover (much later) that increasing my cortef by half (which I'm supposed to do when sick or under a lot of stress) reduces the flu-like feelings, so maybe it IS an immune reaction but he just didn't know what to look for? c) PROGESTERONE plus ovulation! The absolute worst. My OB wanted me to get off bcp cuz I'd been on them so long, and because I had the autoantibody that can cause clotting, so he'd suggested the progesterone ring. I was concerned about adding a hormone, but he promised there were no side effects. Not long after, I started feeling like I had a horrible flu during ovulation, not just feverish but terribly achy all over. I called and asked about it, but was again told it would not be related. The last month I had it (don't remember how many months in), I thought I wanted to die rather than keep it in one more day. I was so sick I could barely move because I ached all over and felt so feverish. I was in tears over the phone begging a doctor to see me that day and take it out. My doc was busy, no other OB would see me as I would be a new patient. I remember my distress but not exactly how I resolved it-maybe I went to urgent care, or my FP doc did it. I felt MUCH better the next day, not surprisingly. I did call the manufacturer to report an "adverse side effect", and they said they would take down my info and call me back. Uh huh. NOT. I guess when reporting an adverse side effect, you don't call the company making money off of it......doh. My worst times were a long time ago, when I was in my mid-20s, although I still feel flu-like at times (like today, as a matter of fact; kept feeling my face all day but it wasn't hot). Sorry. If it's not in the cookbook..... edited because apparently a 'b' with a side parenthesis turns into a face.....
  25. I was told by the cardio to Salt Load. Since I have low blood pressure, have been told (by my endo) to take florinef in the past for postural hypotension, and find that salt/electrolyte loading during exercise helps, I thought this made sense and was willing to try it. The first day I did this-nothing formal but drank things like high sodium broth etc, I felt okay during the day but that night, I felt on the verge of seizures, very hyper-startleable, if anyone knows what I mean by that. I've been feeling that way again this week-coincidentally (or not) I had been having salty popcorn and/or sodium/electrolyte drinks before bed-more salt than normal late at night, in other words. I thought I saw someone here say something about not taking salt before bed. Is this true? Is there a recommended "circadian rhythm", or day-night pattern for salt intake? My dh is out of town, and the last few nights have been scary, with me pretty much unable to move because every little movement was a huge startle reaction (increased shaking internally-is this adrenaline?- and relatively elevated blood pressure my "baseline" these nights). It seems to peak around 1:30am, and then I am able to fall asleep sometime after that, although one night was really bad and I barely slept, and had nightmares when I did. I haven't actively salt-loaded since that first time because I was afraid of my "reaction" (although it's quite possible salt wasn't *causative*, I was too afraid to try again), since my husband is out of town so much right now. A few more months, and I'll be moving to a large town with a LOT of doctors (woohoo!), and will try again for some knowledgeable advice. Until then (or even after, as internet boards often know more than doctors anywhere!), you are my font of advice! Thanks for thoughts!
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