Friedbrain

I posted about this a month ago, had a very bad episode (have had minor ones in the past). My abdomen felt funny, too, like it was also heavy. I was afraid it was related to my heart, as the symptoms matched congestive heart failure (my Bp was also very very low - 78/52)I have trouble sleeping on top of it because I jerk awake frequently (I suspect it's an adrenaline response to low Bp or oxygen because I am trembling and my heart is racing when I jerk awake). I went to the doc and surprisingly she wants me to rule out reflux with an endoscopy. I read that it can present that way but I don't think that's it. I had this again earlier this week, at night, after an intense workout that evening. I was urinating a lot that night, which may or may not be relevant. I recently saw a new endocrinologist who mentioned that cortisol helps regulate water retention, and I have adrenal insufficiency. Now I'm wondering if I'm having some minor episodes of adrenal crisis after working out, am flushing water resulting in low Bp at night. Even tho I was having to get up all night to urinate, I tried to drink water to replace what I was losing. I have urine strips (from amazon) that can assess many variables. Since I sometimes produce NO urine and at other times can't stop urinating, I'm trying to see what's going on. I wish others did the same so that I could compare notes! I'm now trying to track concentration (specific gravity), ph and leukocytes (protein and ketones are also often positive but maybe falsely so? Not sure). Strangely, I have been sporadically leukocyte positive over the years so gave been often tested for bladder infections-always neg. this week after the bad breathing ep, I felt bad and was briefly leuk positive. I have been leuk pos w my urine strips, too, for windows of time and then nothing. Doc hasn't cared since it's not a bladder infection...(?!) I don't know if/how it could be related but I'm tracking it.

Fwiw...she suggested ruling out (or in) reflux. She said reflux can present as trouble breathing when horizontal and w a bloated feeling in the abdomen. I'm kind of relieved but also a little dubious because I do not have burping issues. But she recommended an upper GI to check, and trying liquid mylanta when symptomatic. Since I was supposed to have an upper GI for swallowing difficulties (I passed on this three ys ago out of fear), I will see if I can get both issues checked at the same time. The burping problems I do sometimes have are related to swallowing (I did have the swallowing dye teat which showed a sluggish epiglottis or something like that). ANYWAY, just wanted to share that. It would be a simple idea but it feels more autonomic to me. With the really bad episode thus week, I'm still feeling residual low breathing at rest (I get up and exercise to feel better). I didn't get the feeling she was saying THIS is necessarily the answer, but a practical first step. I like the CPAP idea in the other thread here. My mom uses it at night and saw a huge improvement in her sleeping. Thank you for your thoughts and stories!

Thank you for the feedback. I made an appt to see the doctor today. I'm encountering stress later this month (so I'm probably unconsciously already reacting to it) so I don't need this!

Sorry-cant edit from my phone. Meant to add that I have low Bp generally (and have had postural hypotension in the past) so I know this is very different, with the breathlessness and funny stomach

Several ys ago, I was diagnosed with dysautonomia but that was during a lot of stress. For the most part, I'm ok these days minus a few crises times when I ended up in the ER. I'm starting to go through menopause so the hormone changes may be making everything erratic (and bring on sporadic episodes of dysautonomia?). I've been having some episodes at night (and last night was really bad) where I don't feel like in getting enough oxygen while lying down. And my stomach feels funny like it's heavy (and affecting my breathing, which doesn't make sense). It's an aweful, uncomfortable feeling so I flip over and over again but no position other than upright works. Suck in my tummy, doesn't help-just feels weird. Last night when it was so bad, I took a left arm Bp - 78/52!! Hr 71! My right arm was more normal at 94/63 hr 67, but I read that difs >10 aren't good and that the left arm more accurately reflects the heart function . My reading sounds like my heart was not pumping effectively and that the stomach discomfort while lying down was from pooling. Alao, all moght ling, i kept getting adrenaline jolts waking me up like id been shot. I suspect maybe my bp was drpping below sustainability. I'm not even 50!! Since I'm better today (but not 100%), I don't know what to do. Does this sound familiar? Other than dysautonomia related tachycardia and some days of chest pain (that an ER doc said was probably inflammation so now I ignore it), I'm very healthy and athletic. In fact, exercising (I lifted some weights last night to get my heart pumping more) helps! Thank you for your thoughts!

Adrenal insufficiency. I've had many episodes of intense all-over body shaking that were called all sorts of names, incl probable seizures in the er because that was an easy go-to answer with no thinking involved because I have a seizure disorder. But I was in the er last week for this, and the doc said she thought it was related to my old diagnosis of adrenal insufficiency (ie an adrenal crisis) and treated me w fluids and high dose solimedrol. Ta da all better. <sound of pieces falling into place> I've been told I'm very complex, which I believe. The autonomic nervous system and adrenal glands interact so you can imagine the chaos if both are wonky. But I'm doing better with a re-increase in my daily cortef. A GOOD endocrinologist, not a rheum, makes this diagnosis though. (Can be autoimmune-primary; but mine is secondary)

When I first started having seizures, they always started at around 3:30am (nocturnal, but my dh knew). Once they were under control with Keppra, I would still sometimes wake up with a start, buildup, flash if heat, then all over body shaking, at around the same time. There's definitely something about that time. My doc added lyrica at the time, but then had me take a teeny (I halved it) Xanax during those spells. They would resolve after 15 min, maybe from the Xanax. I used to erroneously take my nighttime cortef too late in the evening, and when I stopped taking it, I stopped having those nighttime episodes. So maybe either too much brain activation, or maybe it was in withdrawal by that time? Idk BUT something interesting to try-my dh got me a fitbit, which also tracks nocturnal/sleep activity. It's reeeely interesting to see how the first part if my nights, I'm out solid but that, around 3:30am, I start moving/waking that last pretty much the rest if the night. Needless to say, it's calculation of my total sleep is low, around 4-5hrs/night. I'm still researching to see what this means and what normal people look like

I had been exercising regularly for a few ys before my symptoms worsened. After working out, i became dizzy and then my entire body would start shaking. I received some good advice from here that I still follow. I always have to add an electrolyte packet (no sugar/calories) to water and drink throughout (I tested this theory by not using the packet and had the shakes again-dumb but convincing). Also, the heart rate increases from exercise but when I get done, the heart slows down and my Bp is low so then not enough blood to my head (may be why I got dizzy and then-adrenaline-shaky) so staying down on a mat or laying down a bit to re stabilize helps.

Same here. My rheum said it was an indication of an autoimmune/inflammation response. I have Sjogren's and Hashimotos, at minimum.

I know what it's like to have status epilepticus, a dramatic if not traumatic (because we were unconscious!) experience. It, and subsequent grand mal seizures, were all nocturnal so my husband knew but I never did. I was first on depakote but that didn't stop them. I've been on 3000mg keppra since 2003 wo problem. I started being woken up in the middle of the night w what they thought were maybe partial "breakthrough" seizures so 75mgx2 lyrica was added c2005. I'm still on that. I was mid 30s when this started. No history if migraines but 1.5 months before the se, I experienced sudden onset MS like symptoms, had been hospitalized, on high dose steroids. They never figured out what caused any if it so after the seizures started, we switched to managing instead of diagnosing. I had lotsa MRIs at the time and they saw "nothing". A more recent one was "fine", but when I read it, I saw that it mentioned lots of small white spots that would be typical for an elderly person (which I'm not, thankyouverymuch). A new Neuro commented that that MRI was NOT normal but that, since MS had been ruled out w thorough testing and I'm still okish, it's probably not. His Best Educated Guess is Sjogren's. fwiw. I have erratic Bp and hr sometimes, going very low, worse under stress (when my head symptoms occur). I've wondered...hypothesizing...whether my body shocked itself and the adrenaline caused the seizures. I have a feeling like I'm going to have a seizure when I used to get the epinephrine shot at the dentist's office-awful! Anyway, take care and good luck! (Edited because my clumsy fingers turned a word into a bad word-sorry!)

When my health blew up 11ys ago, that's similar to how I presented. It started one night with mild dizziness (I was driving and it was like I was drunk-my eyes were slow to respond to head movement), and the next morning I woke up and walked into a wall. Quickly, I ended up with double vision because my eyes were not moving (several cranial nerve palsies, especially 6th) and loss of balance. I experienced the eyeball freezing one night (and then they were ripping up into the top of my head-excrutiating) and went to the ER. At the time, I was also experiencing several MS symptoms including trouble swallowing and at that moment, loss of ability to urinate. MRIs and lumbar punctures were all negative, but they put me on high dose steroids in the hospital, which I tapered off of when I got out. My symptoms were resolving slowly, but at one point after a stair-step reduction in the steroids, the dizziness/eye problems increased again, so I had to increase the steroids back up and slow the taper. A month after that hospitalization, I ended up in the ER with status epilepticus (numerous seizures while unconscious), so they put me on anti-seizure meds; otherwise, they didn't know what was causing my problems. I was fatigued for months, had my thyroid med changed, more testing, ultimately diagnosed with adrenal insufficiency and put on cortef (a steroid). Now.....with new docs....they are thinking all of that may have been related to an autoimmune crisis. It fits, and the absolutely newest diagnosis, as of last month, is that it may be Sjogren's! It's pretty new thinking to realize that that disease causes neurological problems, but many people with the autoantibodies actually do experience a similar cluster of "random" symptoms. The neuro specialist who said this said that MS and Sjogren's present very similarly, so if MS is ruled out, it's diagnosed as Sjogren's (plus I am SSb positive). I have been seeing a rheumatologist for the autoimmune stuff. Last year, I tried plaquenil (the "intro" level medication) but had an allergic reaction to it (doh), so had to stop. The next step is azothioprine, which I've been resisting, but know I should try. My docs are also thinking that the cortef I was on for 10 ys was possibly helping to mask the problem. My endo says he doesn't want me on it if I don't need to be on it (I tried reducing it last year to see if I needed it, which is when my symptoms worsened again), but my other docs recognized that it's a bad idea to take me completely off it until we figure out what's going on and how to help!

{{hugs}} btdt with both a miscarriage and having a doctor pat me on the head and say everyone has them, it's no big deal, don't worry so much about it happening again (she, my OB, was about 7mo pregnant at the time! Grrr). I didn't buy that because, like you, I had a history of autoimmune problems and had researched my increased risks for problems. I went to a pregnancy specialist instead, even tho my problem was not conceiving, or even technically a candidate (after *only* one miscarriage). He tested autoantibodies (I came up positive for the anticardiolipin Abs (can cause miscarriage via clotting) among others), and hormones throughout the cycle (if I remember correctly, the LH was always high or something weird). AND I went in for an US of my ovaries-before going on clomid, and I had like 20 cysts. The nurse was astounded. My understanding-as vague as it is-is that all that suggested that my hormones were NOT cycling normally and that the clomid would help out by making several nicely sized and healthy cysts instead of a bunch of randomly aged cysts, if that makes sense. (I've read both that clomid is helpful in that situation and that it's advised against, but I tried it anyway). I didn't conceive while on the clomid though. To answer your question.....but this was before my serious health problems (but after I'd been experiencing autoimmune problems).....is that I don't remember any serious side effects. But what I'd like to add, for your consideration....... is my experience a few months after that when I did get pregnant. I immediately went back to the specialist, and he tested both my hCG and progesterone levels. My progesterone was too low to sustain a pregnancy! He had me start on progesterone supposetories right away. I'd been experiencing back cramping (similar to a period!) which went away when I started the progesterone. In hindsite, I believe that I was in the process of losing that pregnancy and that the progesterone saved it. The hCG was tested a few days later and had gone up, so I knew I was doing good! I took the progesterone throughout the first trimester; because of the autoantibodies, the pregnancy was considered "high risk" and I was on baby aspirin and monitored throughout, too. Healthy full term baby. When I became pregnant a second time, I repeated above. Went straight in to see the specialist, and he found that my progesterone was again too low to sustain a pregnancy. Back on the supposetories; away went the cramping. Two years after the second baby, I started having severe catamenial seizures.......the type that are hypothesized (last time I looked) to be related to....drum roll..... low progesterone before the period. And all of my health problems since that time 11 ys ago (when the seizures started) have been associated with a window of time in my menstrual cycle. So, yeah, hormone imbalances are a huge problem for me, and I'm SO glad that I found a doctor at that time who even looked at it. Good luck!

E Soskis, I appreciate knowing someone else knows what I'm talking about! It's fascinating to know that you are also experiencing trouble with bloating/sieving, retention and lack of sensation. Why?! It makes some sense to me that the difficulty urinating (the actual problem varies and sometimes is in combination, too-difficulty with initiating, stream, and/or complete emptying) and lack of sensation may be related to dysautonomia. Although I'm still trying to tease it apart, there are two nerves that send/retrieve info in the pelvic area, the pelvic nerve and the pudendal nerve, I think. But I only started wondering if my water balance is affected.....I'm not sure how that would fit with the picture. Unless it's kind of a physiological response to the urinary retention (ie, does the body sense that the bladder is not releasing, so it starts simply withholding the water? And then when the bladder's working, the body stops retaining water and whoooooosh?!) But yes, I'm also a "retainer" like you talk about; I thought I was imagining it that I have some difficulty breathing at night when it's at its worst. I had urinary retention on and off for ys (had to be catheterized in the hospital 10ys ago when I was experiencing a host of neuro problems, and the uro consult said it was probably neuro-related), but only within the year, I've started having problems with lack of sensation. I tried dealing with it by literally setting the timer on my phone to go off every hour. However, the month my dog died, I had lack of sensation combined with complete inability to urinate one morning and ended up going to the ER. That was scary! So, although I'm not E Soskis, to answer your question, Mytwogirlsrox, yes. After the trip to the ER, I went in and learned how to self-catheterize. I'd resisted and resisted, but because of the cost (of an ER visit!) and for peace of mind, I decided I needed to have the ability in case that happened again!! Fwiw, the uro insisted I have a spastic pelvic floor and that I needed PT (nevermind that when I was in for the visit where she diagnosed this, I was not experiencing symptoms because my period had started). Otoh, interestingly, the PT discovered that when I am lacking bladder sensation, that I am completely lacking feeling in the muscles of my pelvic floor. The uro specialist I saw (an arrogant jerk) refused to speculate why this is (in fact, I'm not even sure he was listening to me; he kept asking if I *leak*, which I do not), so I don't know why yet. He wants me to have urodynamic testing done, which I scheduled but have to wait three months so that it falls during the time when I think I'll be experiencing symptoms (again, this is usually the 2 wks or so around ovulation). Would love to know why these things are happening to us, E Soskis!

Ditto on having been diagnosed with chest inflammation after an ER visit. Since I have autoimmune problems, I assumed it was related. Strangely......my 12yo has ALSO been diagnosed with this! It was much scarier when he was experiencing chest pains at school and I received a call from the nurse about this! We took him to the ER, and had him seen by a cardiologist. Nothing was found, but he did experience the pain when the chest cavity was pressed. Diagnosed with the joint inflammation, and was told to take ibuprofin/anti-inflammatory during those times. A pediatric specialist has suggested he my have dysautonomia (and he also has numerous signs of EDS like his aunt, something I learned about from here). At around the same time, he was experiencing tachycardia and bad headaches (I took his bp, and it was dropping upon standing). Poor kid. Something that his pediatrician suggested is that, at least for him, perhaps because his joints are looser due to the likely EDS, there's an increased chance of irritation at the chest joint, resulting in the inflammation and pain. ?

Susanhs, did you have a swallowing test? I went in for one where they xray the esophagus while I swallowed solutions of varying thickness. They observed that my.....gah, not remembering the name of that flap that covers the esophagus/lung juncture.....doesn't trigger correctly when I'm drinking water/light solutions. Thicker solutions trigger it, and it correctly covers my lungs. What this means is that I have a problem more typical of 70/80yos.....in that I am at risk of aspirating liquids (and yes, I choke on water/burp up air from the choking) into my lungs, increasing my risk of pneumonia etc. I'm in my 40s, so, er, shouldn't have this problem. Interestingly, my 70yo mom has this but it is a significant problem for her. The solution if it worsens is to add a thickener to my liquids, fwiw. I didn't pursue a cause for it at this point (though I have neurological and, obviously, autonomic, problems, so could be any number of things). Libby, interestingly, I have your problem, too, of getting nausiatingly full on a normal amt of food. I hadn't realized how small my meals had become until I ate a normal meal and then was up all night feeling bloated. When I mentioned this to my endo, he said "then eat small meals". My mom thinks I'm starving myself but I'm just trying to stay healthy! I don't think it's every meal that makes me feel bloated all night long, but I don't know what triggers it. Over the last several months, however, I've been experiencing mild and sporadic pain in my upper right abdominal quadrant (my sister experiences it, and more severely). My doc diagnosed it as gallbladder, and I had a scan....only one little bump, and some mild wall thickening, nothing that really stood out as an explanation. She wanted me to get the HIDA, a test of gallbladder function, to determine whether it needs to be removed. I went into talk to the doc, but had to see a back-up doc that I didn't like as much. I explained that it's MILD and sporadic (although I do feel bloated after eating some meals), and she said I needed to have the test done. Fine, whatever. But the test was normal, and when I looked at the Release paperwork, I was ticked to see that the reasoning for the test was described as "Severe Pain". Over and over again, I feel like I have these symptoms that don't fit into doctor cookbooks, so they change my symptoms to FIT their cookbooks. What I think? Maybe inflammation irritates the gallbladder, causing the intermitant pain and organ malfunction (resulting in the bloating). I don't know. I know my eating habits are limited, that I try to cope as best I can by altering my diet to achieve the most health I can, and that my diet is not normal for whatever reason, which doctors can't seem to diagnose. As an aside, I had a colonoscopy because I'm at high risk for colon cancer, and I know that my colon is basically fine (some diverticulitis, but I don't think that can cause this). I was supposed to go for an upper GI, but balked at it. I may at some point, but it's not my major concern right now.

I don't know what's going on (or why), so would appreciate any and all thoughts....... Anyone have suggestions for why I might be alternating between water retention and water "sieving" (ha, how's that for a name?)? It seems logical that it would be hormonal, but I have no idea why I would fluctuate diurnally. I know there are others here who, like me, try to increase our water intake and discover that it's like we are a water sieve, with intake and then going to the bathroom constantly. Well, I have been experiencing "bladder retention" problems, where I have difficulty urinating. It's worse at night, and sometimes for days at a time (staring before ovulation, lasting for about ten days or more). One month, after my period came, I was going to the bathroom every hour, just buckets. It occurred to me that I was going even more than usual, so maybe I'd been retaining water when I wasn't going on TOP of not being able to go. Likewise, the last few days (circa ovulation), it's been retention at night and then I am going to the bathroom every hour during the day.......so fluctuating even across the day. It seems like not only am I having problems going to the bathroom, but maybe my body is even retaining water; such that when I do have to go later in the morning, I am releasing (body) water all day long. Does this make sense to anyone?! I drove home from a trip yesterday and it was a NIGHTMARE because I had to stop every hour to go (and it was actually painful....my bladder being super sensitive when sensation kicks back in)

I've always had worse symptoms at night, but I'm writing specifically to ask about whether anyone has strange symptoms that come and go across the night. The reason I ask is that I generally have low blood pressure, and I'm wondering if there are times when my body simply isn't pushing around enough blood, causing problems. ? I have symptoms that could reflect sporadic nerve dysfunction, but since it comes and goes so much, it would make more sense that there's compression or something rather than demyelination. You know, like when you sit too long on your leg and then it tingles and/or doesn't work until it "wakes up". 1) I call it "smooshed"...the feeling I get once in a while after laying on the couch; when I get up, the side I was laying on, the vision is not working, as if the nerve had been smooshed from the pressure of brain matter. 2) A few times recently, (during my period), I woke up in the middle of the night and my entire left arm (from shoulder) wasn't moving. It wasn't just my wrist that was numb; my shoulder was numb and my arm hung and was immovable. I didn't think about it until I was driving and my left arm at the shoulder started tingling! I had it on top of the car wheel and that was enough to start the process. Not getting enough blood simply from driving? (that normally doesn't happen, so this is recent) 3) But more relevantly, I have bladder problems that come and go, but are worse at night. Since it involves both sensory and motor function, and it worsens while I'm sleeping (and usually is gone around 9 or 10am), is there nerve compression going on while I sleep? 4) There have been many months when I have trouble sleeping during the night I'm most vulnerable to problems (before my period), where I jerk awake numerous times (I suspect it's related to the time of my sleep cycle since it's so regular), with heart racing (sometimes gasping first). I noticed this past week, that all three times it happened (in a single night), I was trying to sleep on my left side. Sometimes, it felt like it was hard to breath. I was ok on my right side. I vaguely remember from pregnancy days that there's something significant about the differences in sleeping on the left side vs right side but I don't remember what. However, the time I was in the ER because of serious/traumatic spasms (no word to describe them), they were set off much more if I was on my left side; I had to lay there on my right side. I have low rbc, and then maybe when my bp gets too low, like on certain nights when I'm hormonally more susceptible, it's too low to supply my organs? Does this make any sense, or sound familiar to anyone? The bladder problems are probably their own thread, but I recently saw an MS/autoimmune neuro-urologist who wants me to undergo the urodynamic testing but didn't seem to hear me when I tried explaining that it's only a problem half the month, and then worse at night (and enhanced by stress! I ended up in the ER two months ago after my dog died because I couldn't go at all) *I* know this fits the pattern of my life: related to hormones and stress. But WHY is the mystery that no doctor seems to get. I do have a diagnosis of dysautonomia but do not see anyone for it at this time. Thoughts? Thanks!

It's up to you, of course, whether you would want to treat adrenal insufficiency with mainstream medication (like hydrocortisone or cortef or whatever) or naturopathic medication. However, I would suggest that you find out first if your hypothalamic-pituitary-adrenal axis is messed up. The HPA is a critical response mechanism to stress along with just the day-to-day baseline functions. By artificially (external source) elevating cortisol-if you make your cortisol levels too high-it would feed back to the "top" of the HPA and tell it that it's overdoing its job and then it shuts off. When a stressor would come along, it would not respond, and then you'd be in bigger trouble. Baseline levels of cortisol and ACTH would tell you whether the adrenal gland is producing enough cortisol (ACTH is helpful to tell you where the problem is if cortisol levels are off). You can also get a "stimulation" test where they initially measure your cortisol (and ACTH) and then stimulate your adrenal glands to produce cortisol, and then they re-measure. If your cortisol levels do not increase enough, that would also be dysfunctional. Just my .02

I've gone to the ER twice for chest pains (different kinds). Both times, it was after calling my family docs for advice. I always felt better that way, like I needed to feel "ordered" to go instead of feeling like I was just being paranoid. Stupid, I know. Otoh, after being a "medical mystery" for over ten years and having to deal with so many doctors, some who understood the complicated nature and others who simply thought I was overworrying..... I do feel like I need the support of that opinion. I hope you are ok, and do find out what's going on. Just wanted to say I understand your hesitation, but docs seem to agree that it's more imortant to get that pain checked out. (first time, there was no explanation; second time, doc thinks was "inflammation" of the rib joint, can't remember the name) (Joyagh, I recently started having that right-sided upper quadrant pain, too! Is there an autoimmune component? Mine lasted for about a month, but was mild and maybe resolving on its own? I don't know why it came or is going. An ultasound showed a small cyst and some "wall thickening" and the doc ordered a HIDA but since I'm feeling better, I canceled it. Otoh, I haven't been able to eat large meals for a long time, so maybe this is why?)

Thanks. I did take him to a geneticist because I was concerned. He has a bunch of anomalies that match up with EDS (the bones in his feet are abnormal, his eyeball is misshapen, etc...things that can be caused developmentally by EDS, on top of the hyperflexibility), but the genetic tests did not confirm......so possible but no confirmation. However, he has easy bruising that the pediatrician thinks may "just" be from the EDS, too. And this unusual chest joint inflammation....she thinks may be from EDS, with loose joints getting irritated and then inflammed. Since my sister has health issues related to her loose joints, like the arm falling out of the socket, etc...I feel like it's something I should keep in mind with him for the longterm but nothing that I can have confirmed at this point. The pupils.....modulated by the autonomic nervous system....wondering what's causing this.

Not sure what to do about my concern, so am asking for as much advice and/or opinions as you have. I have a host of health problems (adrenal insufficiency/AI, autoimmune and dysautonomia among them); however, all but Hashimoto's hypothyroidism showed up in my 30s+. I have a 12yo son I'm wondering about...... My main concern right now is his abnormally large pupils. For the longest time, I kept thinking "what beautiful eyes he has" because they were so stunningly different (all that stuff about the interpretation of large pupils is true!). It was only recently that it dawned on me that it was because his pupils are so large, and that they probably shouldn't be. Then I started comparing his with other family members and, sure enough, they were abnormal. Standing under light, if I cover his eyes and then uncover them, the pupils immediately constrict and then expand right back to large (at least they do it in tandem-whew). I don't know where to go with this concern. I called the family doctor and asked if I should bring him in for a general or take him to an opthalmologist-they said opthalmologist. Ok, scheduled but then I started second guessing. I would think it's a systemic problem, so maybe endo or neuro (whom I see; maybe it's dysautonomia or AI?) I hate wasting time on a wild goose chase, so I decided to search for advice.... Other problems he has....possible Ehlers Danlos (which I first learned about from here! My sister probably has it, too); constipation on and off; headaches (that I kept thinking were stress/school related but now am wondering....large pupils can cause that, too); I asked him about being tired, and he said yes, after he gets to school and in the early afternoon (but is that just typical complaining or real? I was diagnosed with hypothyroidism around 15yo but the fatigue was decimating, and hit around 10am); he's had bouts of tachycardia (fully checked out by a cardiologist first time; nothing physically wrong with his heart, so accompanying chest pains were attributed to chest joint inflammation). I know these symptoms don't sound like a perfect dysautonomia match, so I'm wondering what early-stage dysautonomia looks like in kids. He's getting bloodwork done next week, but it's just the general stuff. I'm wondering if I should ask for anything extra, like cortisol (one sign of AI is enlarged pupils); or if I should schedule him to see a different speicalist. Thanks for any and all thoughts!

Aw, so sorry to hear about your son! There is a very good newsletter mailed out that contains articles written by Tourette's kids. May be inspiring and helpful for your son, idk: http://www.tsa-usa.o...outh/Youth.html I haven't researched Tourette's in a long time to know what the latest info is, but from what I used to read, that sounds like an unusual presentation. Often, it shows up at an early age and peaks in mid adolescence, sometimes though not always going away as the child ages. I have it in my family tree, and I personally experienced the motor tics in elementary school (but not vocal tics, so was not labelled TS) which went away. My son was in preschool when he started having this "flyswatter tongue" and had a perpetual irritated spot next to his lip from licking it. Pdoc wasn't concerned. Then ds started throat clearing in early elem: doc thought it was postnasal drip from a cold. Etc. He was eventually diagnosed with TS because of the a) variety and b they lasted over a long period of time. Didn't interfere with school initially so was not medicated until middle school when the throat clearing did become noticable at school. He went on Tenex, which helped; weaned off completely in 9th grade and hasn't had a problem since then with tics (he's in 11th gr). Fwiw, I have a seizure disorder and am the one with the diagnosis of dysautonomia. I also have essential tremors brought on by (good or bad) stress, where my hands shake at rest. Also, there are nights where I am extremely twitchy. I don't have a diagnosis for it, but it's not TS. Sounds or movement can make me spontaneously startle. In TS, there's an urge, a NEED to twitch. Also, there are nights (I think it's related to when I've had a day of stress) when I jerk something horribly when trying to fall asleep (numerous times a night). The worst time, during a prep for a colonoscopy (so SEVERE physiological stress), I jerked and couldn't move or talk for a few seconds. I looked it up and it sounds like myoclonus, and maybe that time even crossed over to a seizure. I'm glad you've found a good neuro for your son, though. Whatever the diagnosis, it's rough when our kids are distressed and sick! Hugs!

OMG, this is fascinating and so timely! Thank you so much for sharing, Cfmartin! I've been positive for SSB for a while now, but thought it was the least of my worries (I mean-dry eyes? I can deal with that much better than crashing so thought it was no big deal!). Gah! Because the profile described fits my initial crisis so perfectly! Down to the rapid onset, and including urinary retention and cranial nerve problems! In my case, I ended up in the ER with seizures (status epilepticus). Ironically, I've been on cortef since around then maybe because of an intial treatment (solumedrol in the hospital, maybe resulting in secondary adrenal insufficiency) which may have reduced autoimmune consequences over the past 9 ys......until I try weaning off (at which point the dizziness, cranial nerve dysfunction and sometimes achiness would resume). I reduced the cortef in March and was okay except for increase in urinary retention and some other mild-but-not-ER-worthy issues, which may support the need for immune suppressant. My new rheum suggested one (over the phone) but I can't get in to see her. What's also interesting...I've been on a strict diet because I am carb-sensitive. Now, when I eat a normal meal, besides feeling tired from the food, I also end up going to bed feeling bloated. I thought it was because I don't eat much usually, but maybe I don't eat much because my GI tract is messed up! All catch-22 until I can find a doc to try treating the symtoms. I was annoyed with my newendo (who was a jerk in general, long story), who said that if I felt better eating tiny portions and restricted diet then yay me, keep it up (instead of appreciating that it's not normal to not be able to eat like a normal human being). Btw, it would be great to get the name of the Cleveland Clinic doc, if possible. I drove there in order to see a good endo (because the local one was a jerk); I certainly would drive up there for a good doc who might be able to help with this!! Thanks! Editted to add... just went to Cfmartin's blog and went to the CC link that has an interview with Dr. Jaeger.....wow, cool! He talks about the pulse pressure issue, cognitive problems.......me!

I need advice, please, on how to eat in a way that's not impairing! I recently realized that there are probably two completely separate mechanisms causing me to crash after I eat. Here I've been thinking I had found a successful way of coping, only to start having a broader "crash" response I think the new problem is related to blood pressure/blood flow, and I don't know what to do so that eating and coping (ie daily living) are not mutually exclusive. (my recent blood results suggest I'm lacking in just about everything, which made me wonder if it's diet related, because my food intake has become more and more restrictive by necessity.....? Other option is that there's a serious health problem that I don't know about yet, which may be likely, but I should still increase my food intake). Mechanism 1) If I eat sugar or carb-heavy meals, I experience tachycardia or crash (for HOURS;not to even open my eyelids). I learned to deal with this years ago by eating low carb, and it helped immensely. But then over the past months, maybe since decreasing my cortef dose(?)...... Mechanism 2) any time I eat in the afternoon, I start feeling lethargic, and like there's a jumbo jet about to land on my head. I am luckily not working right now (tho want a job, so need to fix this pronto!), so I have the luxury of going upstairs to lay down. Once I'm horizontal, I start to feel the pressure in my head go away, and feel much better. Thinking this through, I realized that this is very different from Mechanism 1, which does NOT go away. I have low blood pressure and postural hypotension, so I think that maybe just the simple act of eating is enough to cause too much blood to be diverted to digestion and not leaving enough for my brain (and this is helped, in turn, by reducing gravity's effect on blood flow). The problem is, I don't know how to deal with that! I have to eat, and even eating small meals that used to be ok (heated frozen veggies, cheese, chicken chunks and spicy topping) do this to me in the afternoon. Take a midodrine before I eat? Does this sound familiar to anyone else? I need to broaden what I eat, and yet I don't know what to eat! I promised my mom (who insists I don't eat enough) that I would ask for a referral to a dietician, but maybe someone here has specific suggestions on dealing with this. Thank you!

Sue, (I apologize if you alread know this) the HPA (hypothalamic pituitary adrenal axis) is sequential, with the pituitary's ACTH stimulating the adrenals to produce cortisol. So, for example, if you were experiencining stress at the time of testing, you would expect to see an increase in ACTH along with an appropriate increase in cortisol. When your cortisol is elevated and sufficient (ie for a prolonged period of time), only then would you expect to see negative feedback resulting in a "top-down" shutoff, and decrease in ACTH. OTOH, for example, if you have adenomas that were producing/artifically elevating cortisol in your adrenal glands, the circuit would recognize elevated levels and ACTH would shut off (so, high cortisol, low ACTH =bad in that scenario). So.....my interpretation anyway (as someone who has AI and is familiar with the cirucuit, but I'm NOT a doctor), is that it sounds like a good thing that they are consistent