Friedbrain

I went to a cardiologist who is familiar with dysautonomia, thinking it would help with diagnosis of my symptoms. I'd been having a few particularly bad few months, and was hopeful that whatever he caught on the holter monitor would help with understanding what was going on. Ok, so he gave me the label of dysautonomia, which I guess I was relieved to get, but the whole experience seemed a little shady so I wanted to see what supported the diagnosis (not that I doubt it, because my various brain and peripheral symptoms match this better than a lot of independent diagnoses, but I wanted to see his logic). In the follow-up, he was rather vague about the events I'd called in (I'd had numerous events including what was possibly a partial seizure that I brought on following exercise, an episode that almost tipped into seizures, and couple middle of the night episodes), waved his hands around, and declared that it was mild dysautonomia and that I should salt-load. Suspicion is my nature, and since he didn't address anything specifically, I wanted to see it all for myself so I requested a copy of the report and the raw data (the holter monitor results). It cost me almost $20 for the request PLUS 60 cents a page (and there are many pages because of the raw data), and in fact I did find that his report contained numerous inaccuracies....which leaves me ticked that I have to pay for the report What I'm trying to say is that, in reading this report-which will be sent to all subsequent specialists I see if I want this "medical information" shared for purposes of treating me-I discovered that it's wrong and therefore would affect all subsequent treatment. And there should be some accountability to that-if nothing else, I should not have to pay for it, and he should revise it to make it accurate, don't you think? Does this make any sense? A MAJOR flaw was in his interpretation summary, he wrote that I had "sinus tachycardia up to 145 bpm with exercise". This is wrong on two different and important points! I had two incidents that occurred AFTER exercise, where I was sitting in my car and had a series of phases starting with heart racing, then dizziness, that transitioned into all-over body shaking (that an ER doctor a few weeks prior had called a seizure; whether it was or wasn't, I don't know and my neuro didn't feel a need to label). In the worst episode, the first one, my heart was racing so fast that I was panicking trying to "catch it" on the monitor and had hit the button twice within a few minutes (the whole episode lasted at least a half hour), and I found out later that neither of the first two button pushes had been recorded because apparently hitting the button too close together canceled out both. SOOOO, point being, that the holter monitor did not catch my heart racing at its peak, but about ten minutes later when I had transitioned into the shaking. This is hugely important because if a doctor read that, he would think that the heart racing at 145 during exercise was normal, and NOT understand that a heart still racing 10 or so minutes after the start of the heart racing, which was a half hour or so AFTER exercise, is NOT normal!!!! Actually, kind of scary that this important point is so inaccurately portrayed in his report!!!! He doesn't comment on the nocturnal events at all (which, ok, it's not really a cardiac issue since they weren't arrhythmias, but they weren't NORMAL, so imho he should have just said so and recommended I discuss these episodes with my neuro...which I will do, using the raw data that I had to pay to get). It mentions a passing-out spell, which I never reported (!?) The one helpful thing in the report is that he comments that it looks like I have a "vasodepressor element if what she is describing is true" (er, except for that insulting-sounding comment about my self-report), which he didn't talk to me about at all! But it would explain my numerous episodes of dizziness and feeling faint. Helping me understand those episodes by TALKING to me about it-what they are, what to do and not to do when feeling that way- would have been helpful, duh. So.....I guess I paid for a diagnosis and got what I paid for. I went there to talk to him about it; he gave me the diagnosis.

Off-topic, but Mason's Dad, what are the vision problems like, and what causes them? I ask because I've had vision problems, too. Mine were labeled 6th nerve palsy at its worst (when my head "blew up", 8 ys ago): had trouble moving my eyes horizontally and ended up with double vision. But that was at its absolute worst, and I had other neurological problems. But I still periodically have problems with my eyes where I have some trouble with horizontal movement feeling sluggish. Steroids helped the initial episodes. I don't know why I still have periodic problems, although it seems to happen at night and I wonder if it's related to increased intracranial pressure-my pet theory right now. Anyway, do you have a reason for the vision problems?

Just throwing in what I've done, cuz I can't answer your question about what to do. I know I get scared for myself, so can only imagine that it's 1000x worse when it's a child since you can't be in his body to know what he's experiencing. I've done what others here said-my dh once drove me to the ER parking lot when I had lost cranial nerve function and my fingers had gone numb (I had tried playing tennis with a college student in 100 degree weather and didn't want to call it quits cuz that would've been admitting I couldn't keep up.....dumb, yeah). We sat there for a while to see if I got worse, or better. I drank a lot of water and cooled off, and tada, felt better, but my panic was decreased by being right there just in case. Also, for what it's worth, I also have a blood pressure monitor that I use regularly. I'm trying to learn what's normal for me and what's normal for the different mental and physical states I go through (shaky vs dizzy, vs feeling like I'm gonna faint etc). My blood pressure is normally low, but I have noticed different pulse pressures have significance, and sometimes my pressure gets *really* low, and sometimes it gets very *relatively* high-and they're all associated with symptoms. I'm hoping that the more I understand, the more I can help compensate. I also try things and then re-check, to see what helps and what doesn't. The more I feel in control, the less scared I am, and that helps, too. But I like the suggestion of sitting in the ER parking lot-maybe you can have a Care Kit for those times. You know, like the suitcase you have standing ready for when it's time to run to the hospital to have a baby. A little bag with cards and water bottles, and checkers board, etc. So it's not a stake-out with your son as much as it is a kind of camp-out

<shrug> I saw her and she said it sounded like an allergic reaction, and that she'd be happy to schedule an appt with an allergist or make the referral for me if I wanted to pursue it..... I wasn't surprised. I haven't found FP docs to be very helpful in trying to figure me out. Heck, even specialists call me a difficult case. She reassured me that if I were having a life-threatening allergic reaction, I would wake up and know it, which I guess was the basic answer I wanted. Aside from that, she said there's no way of really knowing what I'm having an allergic reaction to (since I haven't been eating peanuts like last time, haven't changed detergents, haven't changed meds...), and was not at all interested in discussing possible testing. Just a "pleasant willingness" to pass me off to someone else. I get it; just disappointed in wasting $30 (even though I kinda knew that's what would happen). So....keep posting here whatever you find out! Thanks!

Your symptoms don't sound *exactly* like mine, but I'll throw this in anyway fwiw. I have pain in my chest periodically upon lying down. After researching, I became concerned that maybe it was blood pooling (I, too, have had bouts of postural hypotension, and have generallly low blood pressure all the time), too. It happened at night, was like a tightness in my chest, hurt, and lasted sometimes for hours (tho not always). I think that's what finally convinced me to go get the Holter from the cardio done. "Luckily" I had some of those chest pain bouts while I had the holter monitor on-nothing showed up as abnormal on the readout so the cardio didn't think it was heart-related. Soon after that, I had another nocturnal episode and I realized that it also hurt to swallow saliva. Ie, I would swallow and a few seconds later, it would hurt REALLY bad. But then I had two nights of that pain, and one of those evenings, my dinner got stuck in my esophagus. I noticed I was also burping up air, and wondered if it was actually a swallowing thing. When my head first fell apart many years ago, one of the neurological problems I had was swallowing (altho it was at a different step of the process-transitioning in the back of my throat). So I went to the FP, who ordered a full battery of tests cuz I was having so much nocturnal pain those few nights, in case there was a tear in my esophagus etc. Nope. So she sent me to a GI.....who said it could be a problem in any numerous parts of the GI tract. Let's just say things were coming out ok, so I wasn't so concerned about the lower GI. I was scheduled to have my upper GI scoped, but since it involved putting me out (which I was nervous about, since I have a seizure disorder, react poorly to epinephrine, and have overall unstable head) and since I was ta-da feeling better, I cancelled. Long story short....for ME, chest pain is periodic and I'm thinking is more likely GI (esophagus/swallowing) than cardiac; and I think it's probably related to my neurological problems that are cyclical based on hormones (I'm now trying to find a pattern to the chest pain occurrences); which ultimately may be related to dysautonomia, I don't know. Anyway, just .02.

Just adding that this is interesting. I have a looonnngggg history of getting bad bronchitis every year with the changing of the seasons. A cold that turns into bronchitis. Eventually, thinking it through, I kinda self-diagnosed it after noticing the pattern: I have autoimmune issues, so it made sense to me that my body was over-reacting to the cold, resulting in inflammation (ie, in trying to help, my body caused the bronchitis), so I started doubling my cortef and ta-da, started self-curing the bouts. Lately, I've been having rare but VERY annoying bouts of both itching and welting (around my underwear lines); along with both minor and (one) severe episodes of facial swelling (nocturnal, gradually going away in the am). Someone here mentioned mentioned peanut allergy after my severe scare, so I stopped eating peanuts and it went away for a while, only to have the itching and minor swelling (eyes and lips) come back this week. So....maybe it's all related. I am going to write your comments down because I'm seeing my FP doc on Friday. I wasn't holding out much hope that she could diagnose anything because, well, it's not predictable and it's not usually observable later in the day, but I wanted to talk to her so that I know what to look out for (my biggest fear is for the swelling to progress in the middle of the night and I suffocate, and I want to know if there's a way to know when serious is SERIOUS). Now I know some specific questions I can ask her, so thank you

A friend with more experience with dysautonomia explained to me that adrenaline build-up wreaks havoc with us (we both have it; go figure), and that exercise helps to "use it up" in a more positive manner. So, keeping that in mind, one time when I had what you're describing-a feeling of an adrenaline surge in the middle of the night, I grabbed some weights and did some upper body work, pumping my arms back and up as high as I could. I did that enough times that I was huffing a bit. When I stopped, my heartrate was more typically matching my huffing, and both gradually decreased and I felt relaxed; and then went back to bed. I now keep the weights next to my bed and do that whenever I feel that coming on. It seems to help me.

This may seem like a weird question, but since many of my weird symptoms have overlapped with dysautonomia, I thought I'd ask here. The most common likelihood is a weird allergic reaction, but some lit search suggested that the response is due to vasodilation, which made me think of dysautonomia. So, anyway, the question is, has anyone ever experienced a puffy face? I had a very extreme situation two mornings ago, but now that I think of it, I think I've had mild cases like it maybe even frequently, which makes me think it's something other than a "rare" allergic reaction. Two mornings ago, I woke up and around my mouth (cheeks and lower face) was puffy enough that it puffed out around my mouth and my lips were swollen; the dh could even tell. It felt weird to smile. It was also puffy around my eyelids; sitting still, I could feel pressure from the swelling over my eyes. I looked it up and this is what it sounded like (and kinda looked like, altho my eyes weren't as swollen, and my lower face moreso): http://en.wikipedia.org/wiki/Angioedema It lasted for a few hours and I was going to go to the doc but then it slowly went away. However, two or three times over the last two months, I've woken up with a fat lower lip. More commonly, over the last 15 ys, I've woken up periodically with my eyes difficult to move. It always wears off when I get up, so it's hard for a doc to actually diagnose anything. I DID go to the doc about the eye thing many years ago, and was told I have dry eyes and so that's what it probably was. However, I've been thinking it's not dry eyes; I was thinking maybe it was a nerve thing due to the way it felt. But the other day, with my entire face puffy, my eyes felt sluggish like they often do. So I'm wondering if it's all related. My major health problems are nocturnal, so I'm thinking this puffy-face episode must somehow be related. I have low bp, and particularly so at night. I DID have peanuts that evening, and have been wondering if I'm developing a late-life peanut allergy (and have been experiencing serious body itching/hives lately); it just seems weird that I would. Thanks for thoughts!

Thanks, Babette, for sharing that. That's along the lines of what my cardiologist recommended. He said that my body over-reacts to adrenaline and that an anti-anxiety would help reduce the swings that most people have but can handle. I'm loathe to start another med, but it does make sense.

Fwiw, I was diagnosed with "reactive hypoglycemia" years ago, which in my understanding simply meant that although my blood sugar "only" dipped down to 60, I would get symptoms. The doc at the time just kinda shrugged and said oh well, which was NOT helpful except I guess it made me feel like I wasn't crazy but it didn't really help me much. Someone here has argued that reactive hypoglycemia isn't a real diagnosis. All I know is that once I started on a self-determined "modified diabetes diet", I felt TONS better! So even if your numbers don't show typical signs of diabetes, if you are having symptoms, you might want to listen to them (imho!). I didn't understand what "reactive hypoglycemia" meant right away. It wasn't until I was trying to diet after having a baby, and was eating rice lunches and pretty much passing out-a year of "low" blood sugar shakes to "high" blood sugar induced falling asleep (insulin?)-a year I pretty much lost, and then a third doc mentioning something about glucose, that I put 2+2 together and met with a diabetes counselor to learn about that diet. I started eating smaller meals of complex carbs mixed with fats and proteins (like cheese or beef sticks), and my life turned around. Now I eat Low Carb brand snacks and Low Carb brand breakfasts (cuz I know what works and it's an easy routine), combined with high protein/lower carb dinners (harder to be rigid about, so I try to be selective), and I'm MUCh better off. Good luck!

Full disclosure....I have a PhD in a medical sciences field, so my ultimate hope is that I'll be able to put these pieces together for my sake (because doctors sure haven't over the last 9 ys!) (side benefit-for others, as well . I guess that's why I'm asking for as much info as possible. There IS a physiological reason for it...it's just not known, yet. So please tell me as many details about your experiences as you can think of, because I will file them away and think about them, and research them with mine, and see what I can see. As frustrated as I was thinking I had a brain dysfunction that neuros couldn't explain (the seizures and MS-but not MS-like symptoms), I'm 100x more frustrated realizing I may have an autonomic nervous system dysfunction that very few doctors even remember studying. Not my neuro, not my endo.... And I get that. In grad school, I had to take my specialty class with the med students, and it was all about memorization and textbook answers. If x happens, then it's y. It drove the graduate students CRAZY because we wanted to know the WHY of everything but to the med students needing to learn the material, the WHY was irrelevant. I understood it then, but now I'm a victim of that same system. If it's not in their "recipe book", then they don't know and they can't figure it out. And on top of that, doctors who practice day in and day out end up being most familiar with their most common cases, which makes sense. I learned THAT when I needed an endo familiar with adrenal insufficiency: most endos specialize in diabetes..... So if you don't mind me asking....Lissy, under what conditions do you experience the whole-body shakes? Do you have autonomic warnings, or do the shakes just start? What kind of meds set it off? And MomtoGuiliana-do you have autonomic warnings? What kind of other symptoms ("severe symptoms") are you having when you experience these shakes? Fwiw, I also have hashimoto's. Since high school. Thanks!

Lovebug shared this link in another thread, so I thank her for bringing this to my attention. Since I would like info on this particular video, I thought I'd start a separate thread specifically asking about this symptom. I was hoping someone from this site might be able to shed more light on what is going on with this woman's (and my) all-over body shakes (I find it disturbing to watch, but the first minute or two are enough to see what the shakes are like): Does anyone know what causes this? The title of the youtube video is "POTS Full body tremors". You can't see her feet very well, but periodically you can tell that she is shaking from her head to her toes. I definitely experience these shaking/jerking episodes, and they're pretty intense. I've considered the possibilities that they're anything from partial seizures to panic attacks to I don't knows.... The idea that people with POTS recognize them is actually, well, affirming. I'll list off the different times and different ways I experience the same ultimate symptom: 1) Going back 18 ys, I've experienced these extreme body shakes upon exposure to cold weather (going outside and sitting in a car) when under stress. For example, dealing with my inlaws, then going out to a cold car...I would just start shaking until my teeth were chattering and my whole body was jerking. Dh would tell me to relax but I couldn't stop them! (so no "prelude" to the shaking, unlike episodes described below) 2) 9 ys ago, I started experiencing grand mal (unconscious) seizures under VERY specific conditions: middle of night, before my period. Once I became stabilized on medication, I stopped having unconscious seizures, but for the past 8 ys, have had what I (and the docs) called "periodic breakthrough partial seizures" that would occur during times of stress, but only in the middle of the night, before my period. I'd wake up with heart racing, nausea, head pressure building, and then my entire body would start shaking/jerking. I would take a xanax and about 15 min later, I would start winding down. 3) I had a daytime episode three months ago, out of the blue. Scared me because the timing was unusual and because it wouldn't stop, so I went to the ER, which was backed up. Therefore, I experienced this shaking/jerking for about 4 hrs before they loaded me with ativan and I stopped. ER doc called it a seizure and told me to see my neuro. My neuro said he wasn't sure since it was unusual and told me to be careful. 4) I induced an episode like this in the daytime by exercising with only water instead of salt-loading last month. Dizzy, followed by heat/heart racing, followed by shaking that lasted until dh came to get me and gave me salted water. Cardio told me it was because I have POTS (first time to get diagnosis) and that I need to salt-load; that lack of brain perfusion can bring on seizures. 5) Now that my health seems more unstable, I start getting shakes when I'm stressed and even lightly cold (maybe like Sara4?). I go sit under my heater blanket until I calm down (again, these don't include the autonomic "warnings") I live in a small town and the neuro wasn't really familiar with POTS so I haven't bothered seeing him about this yet (I called and asked before wasting my time there; I had to drive an hour for the cardio). The more info I can learn on my own, the better off I am when I DO talk to him! So....? Thank you so much for your thoughts!

Kkmom, I can't help diagnose those experiences, but I thought I could contribute to the discussion re Tourette's (not saying it is or isn't). Tourette's is often inherited but can go undetected or exist in a mild form in (carrier) females. While Tourette's diagnosis consists of meeting a set of criteria which include vocal and behavioral tics over a certain period of time, females sometimes simply exhibit tics. That's how it was in my case. As a young girl, I had numerous behavioral tics over the years, but it was never bad enough (nor did it include vocal tics) to get me a diagnosis of Tourette's. I scrunched my nose for a while (which was very embarrassing but I could not stop doing it!), I did a forced breathing thingy, I had the eye blink..... Anyway, I pretty much outgrew them and forgot about them. Until I had a son. My oldest son has Tourette's. Once I suspected that's what his little "quirks" were, and I started to research both the disorder and my family tree, I realized that this went back even to my parents. Anyway, I thought it might help to ask you if you'd ever experienced tics as a child. Also, fwiw, stress can exacerbate tics/Tourette's. So as a young kid, my ds could go months without symptoms, but they'd often start back up when school would start in the Fall, for example. I think they're supposed to get worse with age, peak, and then taper off towards adulthood.

Lovebug, What is this a video of? That's very similar to what I call "all-over body shakes". I have them in the middle of the night as part of what I call "breakthrough partial seizures" because they occur with the same exact timing as my grand mal seizures (pre-medication and pre-"stabilized"). Ie, they're before my period, they're nocturnal, and they start out with me waking up and having autonomic symptoms (nausea, building head pressure, heart racing, heat flash, then bam, body shaking). They last about 15 min or more (I usually took xanax for these, which I assumed helped stop them). This is what I had after working out when I didn't salt-load. I was very dizzy, then heart racing, then shaking (daytime). (lasted much longer; dh drove out to meet me and brought salt-loaded water for me to drink). Had tingly limbs after. After the "all-over body shakes", I felt a residual vibrating, which was more internal. (I tried explaining that to the doc, cuz there's a difference, and I experience both at different times) I experienced this kind of shaking during the daytime, along with tingling hands/arm, and ended up in the ER. The doc there called it a seizure and loaded me with ativan and sent me home. No real testing. This kind of shaking happens a LOT during the coldest parts of winter, simply by going into the car. My body doesn't thermoregulate well in the first place, and the shock of the cold seems to send me into these spells. Dh will tell me to relax, and I'll be sitting there with teeth chattering in synch with my body shaking, saying I can't.... I would LOVE to know if others experience this, what they think it means, and why they think it happens!

OMG Lissy! I LOVE finding people who say the same thing I've experienced! You are number 3, still anecdotal, but I think it means something. After baby 1, I had the fatigue problem and kept going to the gyno thinking it was female-related because I was also having ovarian cysts at the time. He was a jerk, patted me on the head, and told me it was a typical female thing to feel tired. Anyway, it was during this time that I discovered I was sensitive to carbs, so started on the Low Carb diet and felt MUCH better. Anyway, that's not the interesting thing... After my second baby, I bf for 18 months. I was tapering down and was only nursing at night, then went away for a conference. A lot of stress, away from the baby for the first time ever....had a period while I was away. Two weeks later my head blew up and I've never been the same since. Non-coincidentally, my problems are correlated to my female hormones (catamenial epilepsy, at minimum). I met someone else who started having seizures after stopping nursing (and therefore presumably also starting back with normal hormonal cycle).

The latest episode definitely sounds like a seizure, so I would take him to a neurologist. Videotaping it is a good idea, but you don't absolutely need that in order to get help. Describing it is often all that people have when they go to a doc. I've never had an abnormal test for brain instability (VEEG or EEGs), but I have seizures. Meds can help a lot. Sometimes, having seizures can lower the threshold for having more seizures, so it's better to intervene asap. I don't mean to scare you, but to explain that that can happen and may explain why episodes were more mild initially. It's called kindling (google "kindling seizure"). {{hugs}}

What kind of symptoms? I definitely have symptoms related to my menstrual cycle, but they differ depending on the time of the month. I recommend that you make a calendar or buy a cheapo one, and write down your symptoms along with your menstrual cycle (period, ovulation, etc) for a couple months to see what pattern(s) you detect. Since I am only now recognizing that some symptoms that I've been having on and off for a while are actually related to dysautonomia, I haven't tracked them to know how they are related. It'd be interesting to know what you're experiencing. Sorry I can't tell you how my bp problems appear to be related yet. I have catamenial epilepsy, tho, which is a kind of seizure disorder where I have seizures before my period. I am "lucky" in that the initial months of my head blowing up were so dramatic, that I was able to notice this pattern almost right away. Tgiving night 8 ys ago, I ended up in the ER (that time with undiagnosed seizure spells-long story) and was hospitalized for several days. While in the hospital, my period came. A month later, I was hospitalized because of status epilepticus seizures and stayed another few days. Again, while in the hospital, my period came. Well, a month later, when I had another (but more mild, thanks to medication) round of seizures and then my period came....it was like *lightbulb*! The theory behind catamenial seizures that makes sense to me is that estrogen is excitatory to neurons, whereas progesterone inhibits that effect, or is "calming". Towards the end of a cycle, progesterone drops before estrogen, leaving vulnerable individuals even more vulnerable. I've also correlated both difficulty urinating and achiness/flu-like feelings (not at same time, but across the years) with the week around ovulation, as well. It'll be interesting to see how bp problems correlate with time of month. As an aside, something I first heard of on the epilepsy boards many years ago was that people who experienced catamenial epilepsy used a couple different methods to increase progesterone. One way was to go on the progesterone-only (NOT regular bcp!) bcp. I did this and it actually helped. Until I moved, and my new endo was incredulous that I was "self-medicating" (although I was a married woman so who cares if I was on bcp); I was ticked but rattled enough that I went off it. (and that was a *disaster* because she messed with a bunch of stuff all at once, and my health tanked! Now I'm MUCH more adamant about taking a conservative approach to medicine changes when starting with new doctors). It'll be interesting to see if others have associated dysautonomia symptoms with their cycles. Thanks for asking!

So sorry to hear that hilbiligrl, because my guess is that it would be really, really hard to diagnose! Here's my long story, and hopefully you will understand what I mean: 8 ys ago, during the night, I started seizing. It was status epilepticus, a long series of seizures where I was unconscious for a long period of time. My dh woke up and called an ambulance; I was still seizing when I reached the ER, so LOTS of people witnessed the seizures. They never figured out a cause, but I was put on AED (anti-epilepsy drugs). That helped. I later had a two-day in-hospital VEEG (video EEG) and they didn't observe any instability. I then had a sleep-deprived EEG-again, no instability. From reading on an epilepsy board, it's not uncommon for people with seizures to have negative results. If I hadn't had that ER trip, I think my episodes nowadays would not so easy to diagnose. For the first four months (8ys ago), I had unconscious seizures (grand mal) once a month, about 30 days apart, in the middle of the night. It became clear that they were related to my menstrual cycle, such that I was having them before my period ("catamenial"). So there was a VERY clear pattern to them. After switching to a different AED, I only had periodic "break-through" seizures (what I called them)-same timing but different *expression*. My brain was always very active towards the end of the month, like a pinball zinging around in my head while trying to fall asleep. Sometimes, near the end of the month (particularly when under stress), I would wake up suddenly in the middle of the night, heart beating, nauseous, heat flash, buildup of pressure in my head, then all over body shaking. Again, I just assumed they were break-thru seizures because the timing was SO predictable, and no neuro ever contradicted that. At one point, an extra AED (making a "cocktail") was added because of the "breakthroughs". The only daytime near-seizure I had in 7 years was when we had gone skiing. It was around dinnertime and I took both my AEDs AND a xanax to hold it off. It was only because of a trip up Pike's Peak this summer when I got really sick (just driving up, I became dizzy and seizurish) that I later thought about that skiing episode again in the context of dysautonomia. Anyway, at one point, it occurred to me through research that maybe these seizures were at least in part autonomic in nature because of the symptom match, but I still assumed they were seizures because the timing was exactly like my grand mal seizures. It wasn't until this past Fall, when autonomic problems became exacerbated and I started doing more research that I learned about dysautonomia and saw such a great match with many of my problems. I now wonder if docs have had my problems *reversed* this whole time! That I actually have a primary problem of dysautonomia and that maybe uncontrolled autonomic activation (during a time of month when my brain is more vulnerable: in catamenial epilepsy, the hypothesis is that estrogen is still high at the end of the month when progesterone is dropping, so the brain is more excitable) was actually *causing* the seizures. However, since it's easiest to diagnose the "obvious", nobody's really said that the episodes WEREN'T seizures. Does that make sense? I may very well have exactly the same episodes as others here, but mine are labeled seizures. In fact, in October, I had my second daytime "episode", probably due to stress (like I said, my problems have been worse lately). I went to the ER because I was shaking, my fingers were tingly, and the timing was so unusual that I got scared. The ER doc said it was a seizure (I had given them my history) and loaded me up with ativan. I can kinda understand it's not her job to figure out what was really going on, but it was disappointing anyway. So.....that's the long way of explaining why I'm not sure how it would be diagnosed. My seizures are both related to the timing of the month (and scheduling a VEEG in the hospital is dependent upon availability; not like I can call up and ask to come in for monitoring because my brain is acting up) AND environmental conditions (ie level of stress, probably diet, mostly at night, etc). So it would be SO hard to catch an episode. Which was why I was so upset with the cardiologist's office: I accidentally induced a seizure so that an episode could be caught on the heart monitor; then the nurse told me that I should feel glad that there was no evidence of irregularity.....I about blew. I told her I understood that, from her point of view, it was good news (because she was trying to be comforting), but for ME, something was still seriously wrong, even if it wasn't primarily heart-related. And I was upset because clearly the heart monitor was NOT going to help diagnose those episodes (tho it picked up tachycardia). Sorry so long. Did that make any sense/answer your question?

MM, sorry, I read the thread but did miss the reference to APS. I have had assorted positive auto-antibody tests over the past 16 ys, some come and go. For a while I was close to a lupus diagnosis, but ended up with an APS diagnosis. I have had Hashimoto's since a kid, so when I had a miscarriage 17 ys ago, I demanded they test me for anti-phospholipid abs (because I knew the risk was increased in people with anti-thyroid etc antibodies)-which were positive. I've also had positive ANA etc. I have a diagnosed "adrenal insufficiency", and my endo just tested to see if I have adrenal antibodies (she thinks I probably do, not that it really matters except that I was asking her questions about the diagnosis of primary vs secondary/tertiary), but I won't know until later this week what the results were. Huh, don't like thinking about sticky blood-scary enough to make me start taking my aspirin, so I guess I should thank you for that image If you figure out the contraindication for salt, please let me know! The day I did try salt-loading (right after the cardio told me to), I felt AWFUL that evening!!! I was so shaky and near seizure that I was scared and had trouble sleeping the entire night. Haven't done that since. I need to figure out what doctor to talk to about that before I go trying it again. My dh is temporarily living out of state, so I am now alone at night. Therefore, I have to be extra careful about not rocking the boat since he's not here if something goes wrong! I'm only increasing my salt when I exercise, because that seems absolutely necessary. But aside from that, I don't even want to start the florinef (that the endo gave me) until I know and understand more. Thanks.

For me, definitely. Most of my problems are at night, and I've noticed that elevating my head helps immensely. At its worst, I've slept in a rocking chair. But usually, I pile up pillows and sleep on an incline. Sometimes, simply laying down in bed makes my heart start racing (during the part of the month when I'm vulnerable, for example). Piling up pillows, I don't get the heart racing.

PS would you mind explaining what problems you've been experiencing with exercising? I, too, have been working out 3+x/week for about 4 years, and am in really good shape, but recently I've been having problems after exercising (new cardio says it's related to dysautonomia and I need more salt). Now I'm scared to exercise; it's like my body is not "winding down" correctly after exercising-my heart starts racing, or isn't slowing down, and I go into a panic attack/seizure/whatever (if I don't salt-load). Your thread is interesting because I hadn't realized others had concerns re left ventricle failure. Some reading I've done has pointed to maybe some problem there. What kind of tests did you have to diagnose that? I'm waiting for my results from the heart monitor (I asked for a copy of the report AND the raw data-we'll see if I get both....).

Have you ever been tested for anti-phospholipid antibodies? If you have one auto-immune disorder, you're at higher risk for others. Anti-phospholipid antibodies can cause clotting. I'm supposed to take a daily aspirin. I don't because I take so many other pills, but I get lectured at every doc appt by ever doc I see, so I know I should....

What I've been realizing is that the "break-through seizures" that I've had, similar to your panic attacks, are so very much like autonomic activation that maybe my seizures are even *caused* by a dysfunctional autonomic nervous system. My neuro had given me xanax to take at the start of these. It helped for many years (although now I'm scared to take them if I'm by myself because lately, my blood pressure/heartrate has gone very low, and I'm -maybe irrationally?- afraid my heart will simply stop if I take it at night). As for the SSRIs, the cardiologist I saw last month recommended going on one because he said it would reduce the reactivity of my system to upsets-ie stabilize me-so that my body doesn't over-respond and send me off into these spells. I haven't tried it yet, but the logic seems solid. Fwiw, the last time I was at the ER (for my first-ever workday episode-scared me because it was so unlike usual episodes), the ER doc gave me ativan which made me totally loopy. She sent me home with a prescription for that, to take when I had more episodes. I asked my neuro at my next appt about it, and he said to stick with the xanax; that the ativan was stronger and longer-lasting. Lovebug, I get heartracing after eating sugar. I can imagine that, if I did that before bed (which is when I am most vulnerable to a runaway autonomic response), I might spike into a full-blown attack. I've been thinking about this a lot lately (because, normally, I'm on a low carb, pseudo-diabetes diet, but had a lot of slip-ups during the holidays). Here's what I noticed: after mild straight-carb load or high sugar content food, my heart races something awful, so maybe that's an adrenaline spike? Not sure why...need to research it. Still, the two times I ended up in the ER with seizures was after eating high sugar (Tgiving and Xmas Eve morning 8 ys ago, pre-medication), so this would fit (if a bit on the extreme side). If I eat a heavy primarily-carb load, I fall asleep. As in my brain shuts off, no matter the time of day. It's an awful feeling; doesn't scare me as much as my heart racing, but I don't have an ounce of energy until I've completely slept it off. (although, over Tgiving, when pie knocked me out, I had heart-racing spells wake me up despite the total exhaustion, so that time, they *were* scary)

Fascinating! When my head first blew up, two weeks before my first seizure episode/ER trip, I woke up and walked into a wall. Within 24 hrs, I was seeing double and having to hold onto the wall in order to walk because my sense of balance was gone (when I was in the hospital two weeks later, one nurse asked me if I was blind because the workers thought I was from seeing me walking around). Obvious first thought was stroke in my brainstem despite the fact that I was in my 30s (anti-phospholipid antibodies supported that hypothesis tho); second hypothesis was MS, which also was not supported by clinical data (er, two lumbar punctures and 1000s of MRIs later). Neuros had no clue. I was even sent to an ear guy, who said it was not Meniere's. The closest the neuros could get was that it was something wrong in my brainstem (because of the cluster of symptoms), and then it became a trivial issue when I had my status epilepticus episode, which became the overriding concern.... Most of my balance problems since then have been very transient. Usually during a moment of stress the room might start to spin; or, obviously, due to postural hypotension. It's only now that I'm seeing how the autonomic system is not working properly. I'll be moving to Pittsburgh in several months....maybe I should look the researcher up! Thanks for bringing this up.