Friedbrain

What levels do you have? Following my recent blood work-up, my famdoc said my Vit D was low and that I should supplement for 6 wks and then re-test. Well, my Vit D 25-OH D2 was "<4"; Vit D 25-OH D3 was 38, and my Vit D 25-OH was 38 (with 30-100 being wnl). So.....not sure what that means. Maybe on low end but a problem? There were other results that were distinctly abnormal, but I guess I need to start somewhere......

Anyone have anemia that could be contributing to symptomology? I recently saw my famdoc and we talked about how I'm experiencing a lot of light-headedness, dizziness, had serious brain fog a few weeks ago, breathlessness upon walking up stairs, etc. That is when she suggested trying out midodrine, in order to see if increasing my bp would help with the symptoms (was out of town, and now my dh is out of town until Sat, and I'm not about to try it for the first time without him nearby!). However, I received the results from new blood work a few days ago and was appalled to see that both my red blood cells and white blood cells were abnormally low (and my platelets were at the bottom of wnl). So, if I don't have enough RBC, wouldn't that contribute to my symptoms? Anyone else with dysautonomia anemic? The nurse said the doc wanted me to take vitamin D to increase my vit D levels, and re-test in 6 weeks. Um.....didn't understand that logic after looking at my results because my Vit D levels are wnl, whereas my blood cells were NOT! It won't hurt to take Vit D supplements so no biggie, but I'm concerned that I need to correct the anemia in order to facilitate improvement in the "getting enough oxygen to critical body organs" department! Fwiw, my Vit B levels are ok. I'm trying not to worry about aplastic anemia, which is where my research led. My diet is not the greatest, though, because I'm so food-sensitive: many foods make me tired/crash and/or cause tachycardia, so I have a very limited range of foods that I eat. Logically, the answer is that I'm not eating enough (otoh, for years I've been ok on that diet), but none of the doctors I saw before were helpful in that regard. I promised my mom that I will ask my new famdoc to help me find a diet(ician) that will help me eat more while still feeling ok. Thoughts? Thanks!

Have been out of town so did not see this thread until just now. You are doing the right thing in researching this. At the top you mentioned IV steroids vs oral, but then later mention a shot. What type of steroids and at what doses and for how long each are you talking about, for comparison's sake. The reason I ask is because there is a significant risk in taking high dose steroids (or even moderate dose) for "too long", and in not tapering properly, which can result in secondary adrenal insufficiency ("SAI"), a total PITB that can last years. I communicate with others with SAI and, while many don't know the cause, sometimes it's from medically necessary steroid treatment. Fwiw, when I was hospitalized 10 ys ago, I was put on high dose IV solumedrol (I don't remember any side effects, but then again, I was very sick and even lost ten pounds, so maybe not typical?). They didn't know what was wrong with me at the time, tho I was experiencing neurological problems similar to MS; and had/ve autoimmune problems, so maybe they thought it was a logical stab in the dark. After I was sent home six days later, I tapered off using oral steroids over a period of two or three weeks and during that time, my neurological problems significantly improved (tho they never associated the two, more recent thinking suggests maybe they were directly related). Assorted severe heatlh problems continued for many months, docs here and there, this specialty and that specialty, resulting in several diagnoses, one of them being tada-adrenal insufficiency. It's now many, many years later so is impossible to know if I was having AI problems at the start of all this and it was only picked up later, or if the high dose steroids in the hospital and too-quick taper resulted in SAI......but I've been on cortef ever since. Also fwiw, because new docs think that the cortef may be helping both as support for AI AND for suppressing autoimmune problems, they are talking about me trying an immune suppressant (azothioprine?) instead of steroids to specifically target the autoimmune probs instead of relying on the cortef. This is a rheumatologist who suggested this. Good luck!

Wow, thank you! This really helps me understand the medication better, and know what to expect! I appreciate it. I was trying to work in the garden yesterday-felt yucky before going out but pushed myself and had a lot of problems with dizziness and momentary visual blackouts. Not fun! But I'm feeling better about taking it "as needed" now that I've read the feedback here!

This is so weird that I thought maybe I was being a hypochondriac about it so didn't mention it to my doc last week when I saw her...and I don't even know how to look it up. But it was happening last week when I was very symptomatic, and now it's not this week (and I'm feeling better), so er........... Here's what it's like: when I was in bed and supine, if I stretched and breathed in at the same time, I felt a pain in my chest like I'm squishing my heart against my ribcage. I quickly stopped because, well, who wants to squish their heart, right? And so I told myself that maybe that's something I shouldn't do and is not anything abnormal. But I was also having trouble laying on my right side, especially if I had my left arm draped in front of me (so kinda rounding my back), as it also felt like I was squishing my heart; and/or there was a heaviness to my right side up in that cavity that I imagined was kinda like my heart leaning towards the bed (ie gravity pulling it), and it was so uncomfortable I couldn't lay on my right side. Laying on my left side sometimes was equally uncomfortable, so I spent a lot of time sleeping on my back last week. Last week, I experienced an abnormal, extreme episode of brain fog one day with low blood pressure most of the week. This morning, however, I realized that I *could* stretch and breath without pain, and I *could* lay on my right side without that weird "squished" feeling inside. And so now I'm left wondering what it means! Any ideas?! I'm still experiencing postural hypotension in the evenings but am otherwise feeling better. I've experienced a "squished" sensation before, but with my eyes. Several times in the past, I have fallen asleep while watching tv with my head on my dh's lap, and when I'd get up, the vision in the eye that was on his lap was blurry and would take some time to resolve, as if the nerves serving that eye had gotten "squished" from gravity. No scientific evidence to support my interpretation, just how I imagined maybe it was. I don't know if the two are related..... Any thoughts? Now I know I'm not crazy, since this was a problem last week and isn't now, but I don't know how to even research it since I don't have a clue what it means! (And I HATE not being able to research a problem!!). Thanks!

{{hugs}} I was in your position where the doc wanted me to have a colonoscopy and I felt so trapped between what I needed and my fear of having one. I posted your question here several months ago for the exact same reason. I initially had a sigmoidoscopy, which is a partial (lower) one, and was able to do that with two enemas (didn't want to drink the magnesium citrate? stuff, and they said ok) and no anesthesia. It was uncomfortable but doable, and the prep was tolerable. However, they found a pre-cancerous polyp (and I have family history of colon cancer) so they insisted on the colonoscopy. The good news.....being knocked out was absolutely no big deal. I was talking and then I was waking up! BUT. I had a horrible reaction to the moviprep that they made me do in preparation. Let me say that I have a history of episodes of severe and intense shaking, no known cause, along with a seizure disorder, low bp, adrenal insufficiency, and reactive hypoglycemia (listing these off in case any of these are related to the shaking, may help someone determine their risk of this reaction). So I was kind of in fragile condition from not eating (I carefully drank broth for the sodium throughout the day-too much and I'm hyper startleable, but too little and I feel shaky and faint, blahblah) by the time I had to start drinking the moviprep at 5pm that night. The moviprep is divided into two doses (5pm and 3am, depending on appt time), over an hour period each. I waited until the dh got home before starting.....and then four minutes after starting to drink the prep, I felt a sudden heat flash, pressure, and then the shakes started. Dh and I sat in the ER parking lot in case it got worse, but "all" it was was intense shaking (which I know I won't die from, so didn't go in). It lasted about 45 min and then started to resolve. We sat there joking and reminiscing about meeting in college, kinda like a date. Same thing happened during the 3am dose (but we were in the parking lot before I started drinking it, as a precaution, because my seizures are nocturnal and I wasn't sure how I would handle it). I think I even had some little seizures while trying to fall asleep, jerking and not being able to speak. Not fun. I'm not trying to scare you, but to help you understand the range of reactions and determine for yourself, since you asked. I was mad that the neuro and endo were so flippant about the prep and telling me I'd be fine. It may be a RARE reaction, but it still happened (afterwards, when I was trying to understand *why* I'd had the reaction, the endo said to ask the neuro and the neuro said he didn't know anything about the prep....argh!).

Anoj, If you are positive for one autoantibody, you are at increased risk of having other autoantibodies. I also have Hashimoto's, my very first medical diagnosis (early, back in high school). I have since tested positive for other autoantibodies, including the Sjogren's (SSB, I think). fwiw.

Second the Sjogren's possibility. I have tested positive for one of the autoantibodies. Maybe that's why the steroid drops helped? I had an optometrist once put some kind of paper in my eyes, wait, and then check it for moisture, and declared my eyes dry. But I also had the more diagnostic determination, from a rheumatologist.

I voted yes for Addison's Disease, but I actually have secondary adrenal insufficiency, meaning I don't make enough ACTH to stimulate my adrenals to produce enough cortisol. Same treatment, tho-I take cortef daily, and have for about 9 ys. However, even on ttmt for that, I have these other dysautonomia symptoms. I tried talking to my newendo about them and he kept handwaving and saying they weren't adrenal related and told me to find someone else to help for them. The doc who diagnosed the dysautonomia when I was experiencing the worst of these symptoms was a cardiologist where I used to live. Since my body can't respond to stress (because it doesn't make enough ACTH to kick my adrenals into action), I have a lot of trouble coping with stress; but on a day-to-day basis on the cortef, I've had good spells and bad spells so maybe that's the "and more" part of dysautonomia+adrenal insufficiency. Fwiw, I tapered a bit off my cortef this Spring, and have been having more lightheadedness and postural hypotension (hence, trying the midodrine, which I'm kinda afraid to try...). Sorry if that's too much info....!

I'm curious about the "tingly/itchy" feeling several are reporting. If it's simply vasoconstrictive, and none of you are saying that it increases bp so high as to be concerning, then midodrine's vasoconstrictive effect is to, really, "normalize" constriction......and yet you get symptomatic of.....what? The reason I ask is that there are times when I get numbness in my fingers and sometimes even arm(s) during some kinds of episodes which may be in response to low blood pressure. Speculating here.....but for example, after exercising, maybe my bp drops, adrenaline kicks in, I get the shakes and my fingers/arm(s) get numb....maybe from the adrenaline increasing bp? So will I get bad side effects, this numbness and tingling, from exogenously-induced vasoconstriction? Anyone know why that happens? Doesn't make sense that there would be symptoms from simply constricting vessels like normal people..... ? Thanks for thoughts, hypotheses, any ideas

Debbie Rose, My bp monitor is a generic one from a grocery store in the south. My dh got it for me and it seems to work fine except, like you, it only goes down to 80s/50 before giving me a reading of "EE". I mark down "EE" and know that it means it's LOW Do more expensive home monitors measure lower? I used to think that the nighttime exercises had to do with increasing my effort to match my increased heartrate, but now I think maybe my heartrate had increased to counter the low bp; and that maybe the hand weights increase my bp, so my heartrate could decrease (which it does after I'm done exercising). How did your doc visit go?

Flower, that sounds scary! I don't understand because I thought midodrine is supposed to increase bp? I'm going to pick up a new prescription for midodrine today, but your experience makes me wary. I already have low bp and I'm supposed to take it when I feel fainty. Er.......? Hope you feel better!

Urination is at least partially controlled by the autonomic nervous system, although it sounds complicated and I haven't yet been able to read through it carefully enough to understand it all. Maybe someone could volunteer? Yes, I have had numerous difficulties over the past nine years with bladder emptying. I wish I could tell you why, but I can't. Here's my story. Nine years ago, I was experiencing neurological problems similar to MS, so my brand new neuro was testing me inside and out for that.....and in the midst of it all, I ended up in the ER (for who knows what-some kind of painful eye spasms/seizures) and hospitalized for six days. During my stay, I couldn't urinate. At all. Another symptom of MS, but I never had any positive test to confirm that, so no diagnosis. A urologist consulted, but he concluded it was prolly due to the neuro problems, but I could follow up with him after I got out of the hospital. I was put on steroids in the hospital and by the end, the catheter came out and I was urinating again. I didn't follow up because I was urinating.... Since then, I have had many bouts of *difficulty* in emptying my bladder (not complete inability, tg), but mostly around ovulation (so for several days in a row, and then it spontaneously resolves). The difficulty is *usually* in completely emptying. Sometimes the stream is slow, sometimes not; but I don't completely empty. Then I have to do a weird squat over the toilet to completely empty. Sometimes, on top of this, I even have trouble starting. Infrequently, this has included a series of days where it seemed like maybe I had a bladder infection because I felt like I kept having to go to the bathroom but didn't......but again, no pain involved and it would always spontaneously resolve, so I don't really think it was a bladder infection but, rather, this problem. Different docs have had their own opinions about it. I did go to a uro office once, but since it is only sporadic, I wasn't having the problem when I saw him and he also concluded it was neuro-related and I should see a neuro about it. An ObGyn said she thinks it's related to inflammation due to ovluation (this was earlier this year, when I was experiencing to-die-for ovulation pain of several days at a time, and lots of cysts) and shrugged it off as a thing I should just accept (ummm, ok). My newneuro (recently moved) thinks I should see a urologist I tell myself that, in the big scheme of things, as long as it's still coming out, it's one of my lesser concerns. Still, it is disconcerting to not know why! So....having said that......just wondering if you know (from a urine test) that you have infections? Maybe it's possible that when urine flow is disrupted (because of autonomic dysfunction or whatever is going on), that you're more vulnerable to them? I don't have pain or infections, but I've also learned how to squat to empty so I'm pretty confident I can get it out when I need to. (and I just got a prescription for midodrine-ack!?!) Good luck finding answers!

I may have something helpful to contribute! Yes, my problems initially were only at night (over time, as my health deteriorated (thank you stress), symptoms started intruding into my daytime). After getting nocturnal seizures under control with meds, I was left with periodic nights of heart racing, weird autonomic-like seizures or shakes, etc. I read several tips on this board that helped me, one of them being to raise my head up. I'd already found this to be true-feeling like I had to sleep in a chair, so it was reassuring to know that others knew what I was talking about, and that it really did help. Using a couple pillows to raise my upper body up helped, as well. But what also helped, although I didn't understand why, was to do arm exercises. I have hand weights by my bed, and I would arm pump with them (sometimes over my head; sometimes backwards). Simple as that. I'd get out of bed when my head or heart was racing, do the exercises, then go back to sleep. Just this week, reading up on how exercise affects bp, I read that stationary exercises do not necessarily increase heartrate (like cardio does), but that upper body exercises in particular raise systolic. Which was REALLY interesting to me, since I have a pretty low and hard-to-increase systolic. (IFor example, I have noticed at night that my pulse pressure during bad episodes is sometimes very narrow because my diastolic goes up but my systolic doesn't). So my newest thinking is whether the low systolic is part of the nocturnal problem and that the arm exercises directly help by raising the systolic. So.......try it and let me know!

Thanks for the thoughts. I've read that a 10pt difference isn't really a big concern so I wouldn't worry except that I also notice a difference in the tingling/numbness along the same lines (ie, much greater in right arm than left arm). Alex, no, this isn't only when I take my bp (but it does happen when I take my bp in my R arm); it happens when I have "episodes". Sometimes the cause can be guessed at (like after working out), although other times I don't know why. Flyingsquirrel, during one bad shaking/dizzy episode that did not resolve, I decided to go to the local Medcheck (a friend drove me) but my right fingers were numb and the doc there insisted I go to the ER......not that I learned anything new in that trip, except that I didn't die (they called it a seizure-tho whether it was or not is debatable, loaded me up on ativan-enough that the ceiling was floating nicely around, called me stable, and sent me home, telling me not to drive until I saw my neuro). I guess I'm not scared of the shaking episodes as much anymore since I've been through them enough times to know that I will be okay if I can wait them out (easy enough to say if I'm home and not working!), but I *am* disturbed that I get the numbness more in one arm than the other. Was just wondering if anyone else experienced this imbalance.

I saw my famdoc this morning and talked to her about the scary episode I had last week where I was really dizzy and nauseous, with brain fog, a more extreme example of hypotension/lightheadedness I experience on a periodic basis. I've been on/off florinef several times, going on it during bouts of bad postural hypotension and taking myself off after feeling better because it always caused weight gain and I didn't like it. After talking some more about the bigger picture health issues, she suggested trying midodrine for those times when I feel lightheaded. So, in other words, taking it acutely instead of on a daily basis, and starting at the tiniest dose (2.5?). I searched through the dysautonomia list but did not come across posts of anyone else doing this. Thoughts? I generally have low blood pressure, and after exercise can be really dizzy and lightheaded; I think it makes sense that increasing my bp might address these problems. However, I'm just apprehensive about trying anything new, and am not sure how often (ie how mild the symptoms) to use this. On days when I feel lightheaded (which is usually early afternoon) take one. (then should I not work out? Or should I take one *before* working out and see how I do-I should've asked.... I don't know if there are restrictions after taking a pill) The flipside is that there have been episodes where I didn't feel well (headaches, etc) and my bp was abnormally increased (for me-ie, in the "normal range"), but "chicken or the egg": did I feel bad because my bp was up, or was my bp up because of whatever was making me feel bad? Also, I read the comment here about it causing problems when supine.....which means what? I had nocturnal seizures in the past (9 ys ago; been on anti-seizure meds ever since), and we were speculating about maybe the two were related (lbp and the seizures)-reason being, that if I could figure out what's going wrong, that I might be able to treat it and not have to worry about seizures and then I can go off the seizure meds (new neuro wanted to take me off them without figuring out what caused the seizures-doh). But is it dangerous to take a midodrine and lay down until it takes effect? Or take one at bedtime? (Not that I think I will because I don't usually feel bad *before* bedtime.....usually after I'm laying down, do I experience either the myoclonic jerks, or waking up in the middle of the night-type jerks/problems with EE bp or narrow pulse pressure), just wondering. Thanks for thoughts, warnings based on your experiences, etc. I'm hesitant but at the same time hopeful......I'm sure you can understand!

I have absolutely no clue whether this is a dysautonomia topic or not, since I have no clue what it means, so I'll just throw this question out there and see if anyone else knows what I mean........ Do you experience differences in blood pressure between your right and left arms? I use my at-home blood pressure kit often enough on my right arm that I know how to use it, and obtain pretty consistent values. Therefore, I'm confident that I know what I'm doing when I use it. For this reason, it's always a bit disconcerting when I obtain the "error" message. Otoh, it supports my concern that my blood pressure is, at those times, super low and I'm typically dizzy and/or not feeling well when this happens (as in lower than it's typical 90/60). It happened tonight, for example, after I was done working out (after my heart rate decreases, I feel dizzy and lightheaded). I've started then measuring my left arm's blood pressure, and it is always readable (tonight it was 91/75, with a heartrate of 80). When I CAN read my right arm, my left arm is sometimes as much as 10pts higher (this has NOT been scientific, as I have not done my left arm first followed by my right arm). A physical correlation to this finding...there have been "spells" (can be induced by exercising without added electrolytes, afterwards) when my right (but not left) fingers get tingly; at its worst, my right ARM got tingly and maybe my left fingers became tingly. As far as I know, my cardiovascular system is normal. Thoughts? Thanks!

Mytwogirlsrox, that is my understanding, as well-that blood pressure and heartrate work together to make sure blood gets to the brain. Either blood pressure goes up, or heartrate increases (or both). I have low blood pressure and, as I mentioned in a recent thread, my systolic number often doesn't increase in compensation. My biggest problem, in general, is hypotension. There have been periods in my life that, for whatever reason (different health state, but don't know why), I have experienced tachycardia (instead of dizziness) when climbing stairs etc. Last week I was experiencing tachycardia with a narrow pulse pressure (or my bp wasn't even measurable) upon doing things like climbing stairs. I was also experiencing severe brain fog one of those days where I couldn't even keep track of what I was doing, so I can't help but wonder if maybe my brain was starving that day in particular (this happened before, about 1.5 ys ago, too): maybe without the tachycardia, there was not enough pressure to get blood up there on a minute-by-minute basis. Like I said, I had a bad year 2 ys ago (when I got diagnosed with dysautonomia) and had all sorts of problems. I can definitely tell that my brain is not as fully functioning now as it was before then. I don't know if it's age, or if damage happened (and at exactly what point), but my memory is definitely faulty now and I'm only in my mid-40s. I can't remember names and faces anymore; and when I read, I have trouble remembering characters (and don't get me started on trying to read for professional reasons-I'm afraid I'll never be able to do that again!). So there's definitely been a change for the *much worse* in my memory. But then again, that could be genetic. My mom-in her 70s- recently had cognitive testing done because she has trouble with word retrieval and also can't remember characters in books, etc (she actually makes lists as she reads, which I'm starting to realize is a smart coping mechanism I may have to resort to!) but they assured her it's not Alzheimer's. We overlap in a lot of our health problems, just that I'm experiencing everything 30ys before she does (so we are almost in parallel, which is really sad!).

Lots of questions, all kinda related to when low blood pressure meets something *extra* (stress, or I don't know what). I have low blood pressure, often 90/60. I am often ok on the combo of meds I've been on for years (for seizures, hypothyroidism and adrenal insufficiency), but there are times (once, for months on end, which is when I was diagnosed with dysautonomia by a cardio) when I have significant problems that I think are all related to blood pressure. So here's a bunch of questions... 1) I have had two episodes of significant brainfog, where I was doing stuff I couldn't remember doing, and couldn't remember to do what I was doing. Very, very scary. One of those days was two days ago, and the episodes are accompanied by dizziness and nausea. I monitored my bp Tuesday, and it was low; and walking upstairs wouldn't increase my systolic, only my diastolic and heartrate. Even sitting was too much (nausea and lightheaded), and I had to lay down to feel better. My guess was that blood was not getting to my brain sufficiently, but how could I tell that for sure? And dh asked how can I tell the difference between a mini stroke (I'm in my 40s) and hypoperfusion...? Except that I felt better on Wed and better still on Thurs. 2) When I have dizzy days, how can I tell if it's dysautonomia if I already have low bp? Again, with already low bp, it would be *really* hard to have a significant drop. I don't get increases when I stand, and my heartrate increases (as compensation). I feel better exercising (well, not this week as I'm kinda walking on egg shells waiting to see how I feel each day, but usually!), and I read that certain kinds of exercises raise the systolic, so maybe that's important for me? So I'm wondering, too, why my systolic is so low and if that's part of my problem on a daily basis. 3) Also, anyone know if having low pulse pressure is a problem? Since my bp is low, and my systolic doesn't always respond (didn't on Tuesday), with increasing diastolic, it can get very narrow. At bedtime on Tuesday, after climbing the stairs, it was like 12. I have had bad nocturnal episodes in the past where I wake up in the middle of the night gasping and then start shaking. One time I quickly checked my bp and it was very narrow like this (with very high heartrate); I thought maybe the episode was in response to an adrenaline surge that was in response to the low pulse pressure (shockish). Thanks for thoughts! I haven't been able to find a specialist in my new state and don't know who to talk to about this. Luckily, I'm not working so not under stress, so it's not a problem every day, although I feel better laying down than sitting (I reduced my cortef earlier this year, and there may be a correlation)

Sorry for going off-topic but Alicia, do you know *why* you reacted so strongly to the colonoscopy prep? I had to do it earlier this year-against my better instincts!-and had HORRIBLE reactions to the two dosings, too. Very bad body shaking, both times; and myoclonus that night (after the first) trying to fall asleep. Dh and I sat in the ER parking lot while I drank the preps because four minutes after taking the first sips, the reaction hit me like a mack truck and we didn't know what would happen. I've had bad shaking spells before, though usually didn't know the cause, and have been to the ER for it before and since I learned I wouldn't die from it, didn't bother going into the ER this time. But it sure was scary and I would love to know why it happened!

Interesting how many people here have both dysautonomia and autoimmune problems. I have been on cortef (cortisol replacement) for about 9 years. My new Endo wants me to wean off the cortef because he doesn't think I need it for adrenal insufficiency (diagnosed 9 ys ago); my rheum and famdoc both think maybe the cortef has, at minimum, helped with inhibiting inflammatory process and may be responsible for being free of the MS like symptoms I had 9 ys ago (similar to what DebbieRose mentioned), and are being cautious about taking me off without a replacement. Their suggestion, fwiw, is to replace it with a more specific immune inhibitor azothioprine (?) if the endo insists on taking me off the cortef (their fear, and rightly so, I think, is that I will start having neurological and peripheral problems again if I go off cortef without anything else on board). As an aside, there is a risk in taking high dose steroids even though they can help immensely. I was on solumedrol in the hospital for the mysterious MS-like symptoms (loss of balance, couldn't urinate, couldn't move eyes, etc) and tapered when I got out. I did not experience negative side effects to the solumedrol or taper; however, I later was diagnosed with adrenal insufficiency. Was the adrenal deficit (well, pituitary-secondary) an initial problem, or the result of being on high dose steroids? Impossible to know at this point. Most likely, though, autoimmune problems were there before and after. However, since I was incapacitated at the time solumedrol was administered, it's hard to argue against their use! Anyway, I'm seriously considering trying the azothioprine, but am worried about changing the status quo...... as bumpy as it is, it's the bumpy I know versus the bumpy I don't

I was diagnosed with reactive hypoglycemia years ago based on symptoms associated with low but not abnormally low bg. At the beginning, when it was diagnosed, I would get shaky if I didn't eat after several hours. However, 14 ys ago, I started having symptoms associated with *eating*; simple carbs or carb loading (not that I did that intentionally!) caused me to *crash*, fall asleep so hard I couldn't even open my eyeballs for hours. I lost a year of my life sleeping before someone suggested it was diet related (I was seeing my gyn at the time for ovarian cysts, and he patted me on the head and said that fatigue was a female thing and nothing could be done about it-*%$#). Started a low-carb/numerous small meals/protein and fat combined diet and felt so much better (even lost weight). Since then, as my heath deteriorated/symptoms increased, sensitivity to foods has increased. If I eat sugar, like cookies at a holiday party, I will either experience almost immediate tachycardia or crash. Several times, I have experienced what sounds like myoclonus for hours when trying to fall asleep. Not just regular jerks, but intense jerks (and one time, I couldn't talk immediately after), which my dh agrees about. Still....not sure if my bg gets down below "normal" range (tho haven't pricked myself in years). I was diagnosed with adrenal insufficiency 9 ys ago and on replacement hormone; a new doc wanted to give me a glucose tolerance test but I nixed that! I'm too afraid. OHas anyone monitored their blood pressure after eating sugar? I had a fruit shake (although I'm sensitive to fruit, I used to be ok with these, as they're a combination of foods including yogurt; sometimes, they make me feel nauseous, though; and sometimes I crash) yesterday, and then walked upstairs and took my blood pressure. Granted, yesterday I was not feeling good and most of the morning, that kind of "exercise" was cauing tachycardia and ee on the blood pressure monitor, but I'd eaten salt and was feeling better before this shake; and then my bp was ee again. I have not systematically monitored my bp after eating different foods, so was wondering if anyone has done this.

Wow, that's really strange because fwiw I had pretty much the exact opposite experience! I don't know what's more normal of an ER response. In my late 30s (around your age), I had a similar chain of sharp tightenings in my chest. It felt like a tightening that held for a few seconds and then released. I finally called my famdoc, who told me to go to the ER *just in case* (cuz I didn't think it was a heart attack). At the ER, they put me into a bed and made me stay there for hours, until they got bloodwork that showed no increase in the heart attack blood signs (can't remember what off the top of my head, but proteins that increase when a heart attack has occurred: a baseline and then at hour intervals). Otoh, in a different city (overtaxed ER) I was sent to the ER by Medcheck because I was having a daytime shaking episode that would not end. My fingers were numb so my guess is that Medcheck was concerned I was having a heart attack, I don't know. At the ER there, they triaged me and then made me sit in the waiting room, shaking violently for hours (with others waiting long periods, too). I guess they figured that if I started dying, they'd move me up their priority list but otherwise I could suffer in a chair until they had time to deal with me. I was miserable!

A couple thoughts.....first, I don't know much about the finger scan you had but do you experience numb/tingling fingers? I sometimes get that, but my understanding is that it also can be related to dysautonomia, involving blood flow. Also, (again, imu) I was told by my diagnosing cardio that an antidepressant would help with dysautonomia by helping even out my physiological response to stressors, thereby reducing my body's swinging and help me stabilize. I haven't tried it yet, but it makes sense. It's unfortunate that you gained weight, though, and I can understand why you'd want to try going off it! Kind of a catch-22, which bites. As for the sleep apnea diagnosis.....have the sleep study to see what the data shows, and here's why I say that.... I have sleep problems one or two nights a month, where I wake up multiple times, with tachycardia, and at its worst, ending up with fullblown all-body shaking episodes (well, at its VERY worst, when all this started, pre-medication, I was status epilepticus and seizing all the way to the ER, but that was a long time ago!). Sometimes it seemed like I was gasping for breath, so my famdoc ordered a sleep study. I timed it so I'd hopefully experience a Bad Night (before my period), and I got it. Took me a long time to fall asleep (lots of jerking and tachycardia); then woke numerous times with heart racing. The results showed a significant reduction in sleep efficiency (time after falling asleep asleep), etc, but no obvious lack of oxygen. I was disappointed because it didn't do ANYTHING to help me understand WHY I was waking up frequently, or having the tachycardia. One time I read my bp right after waking up and the pulse pressure was like 10. I think what happens is.....maybe......my bp drops too low at night (I have daytime low bp probs, and bp regulation probs), and my body "shocks" itself and overshoots, resulting in waking me up, tachycardia, and sometimes the adrenaline shakes. The sleep study was worthless for showing anything about this. In fact, it didn't even tell me, which would have been logical, whether my wakenings were happening during a certain stage of sleep. Because, duh, if I "only" woke up 5 times during the night, but slept for 5 hours (because I wake up in the middle of the night with my mind bouncing and can't sleep for a bit of time during these nights)......... and if it's consistently happening at a certain stage, maybe that would also help with diagnosis. I was ticked. It would be GREAT if there was a sleep study for dysautonomia patients! One that correlated bp with sleep awakenings! Ask if you can have those noted during yours, maybe?!

Oh Em Gee!!! Firewatcher, for the very first time ever, I think it makes sense to me!!!! The whole blood pressure thing is confusing to me, but I think what you said fits with a logical explanation. So here's what I think: when working out and doing cardio, my body needs more blood all over. So the vessels dilate, but my heart is pumping faster to get that blood all over. All's good, and I feel great, for the most part, working out. Then I cool down and I'm lying on the floor stretching. My heartrate is slowing down, which is how I assess my cooldown progress. All's good on the floor. Then I stand up and go get my stuff. Now, in Normals, blood vessels must constrict in order to get blood up to brain (gravity and all that), but for some reason doesn't happen. I feel a little off but not enough that I am stopped by it (though if I don't saltload, I DO notice it right away). Make it to the car, and SIT. Now I'm REALLY relaxed, so my heart is slowing down in response to my sitting; BUT my blood pressure hasn't increased at all.......so my brain starts starving and I become dizzy......woo, not good. scenario a.... I'm dizzy and drink some water, another electrolyte packet, or cautiously make it home where I start moving again, which raises my heartrate enough that I'm not about to pass out. scenario b.. in some situations, possibly under stress or without enough salt or whatever physiological state is the trigger (or maybe my bp drops so much that my brain starves enough to trigger it).....the body responds to starving brain......the shock like state.....by releasing adrenaline......and my body over-responds (either puts out too much adrenaline or hyper-responds to adrenaline) and I start the all-over body shaking. (I've been told this is a typical response to adrenaline.....but surely NOT typical for someone who just worked out let alone no apparent trigger at all. I had a med-check doc send me to the ER once because of this shaking. It's not normal!) Does this fit others' experience and understanding? Wow, now to figure out why my bp doesn't respond.....! Fwiw, I had a visit with a personal trainer today, so it was an atypical workout for me (I usually start with cardio and then do weights). He showed me around the weight machines, doing reps here and there. Strenuous but not cardio. I was FINE (felt a happy burn, in fact). But at the end, he wanted to show me a cool trick that is cardio along with working upper body. It's shaking this 50lb rope vigorously for 30 sec. Numerous times. Boy, it got my heartrate up along with the burn. After I was done with that and walking away from the gym, I was feeling a little woozy! I think Firewatcher is really onto something!