Friedbrain

Oh. My. Goodness. YES!! I am so excited to read this thread because I haven't found anyone (or any doctor) who understands thus!!!!! I completely understand the singing from not producing urine to suddenly it's flushing constantly out of me to the point where I ended up in the ER, at its most extreme. The nocturnal urinating all night is a PITA, btdt. It has improved a LOT since I started taking prednisone (1mg) at dinner-oh wow amazing. There were times when I wasn't producing much urine in the morning but about 11am I would suddenly become Niagara Falls, going (a lot) every 15-30 min. Why? That was ~3hrs after I took my cortef and my Endo said that's about the pill's effectiveness. One time when I was under stress, this happened to a very bad extent, I couldn't stop urinating (I kept drinking waster-maybe in hindsite I should've added electrolytes because it didn't help at all and maybe just made things worse) and became weak, then w tachycardia, then trembling, then violent shaking. By the time I got to a medcheck place, I was a wreck. I started crying from frustration (having had these spells before, I just wanted someone to fix me), so the doc thought I needed to be ambulanced to the psych hospital! (Panic attack) I was like-no, I'm sure that may be what I look like but that's not it! They sent me to the normal ER and the doc there filled me up w electrolytes and solimedrol (for adrenal crisis), and told me to up my cortef!! Long story shirt-a new Endo switched me to prednisone (longer lasting) 2mg am 1mg dinner. It helped w the nocturnal urination problems 110%! (Both the difficulty producing urine and the overproducing). He said that cortisol and the kidneys contribute to water balance. Not sure exactly how it helped but-yay! Fwiw, for data collection purposes, I purchased the 100 pack of 10 measure urine strips from amazon. You can track specific gravity of urine to show when you're flushing (very very low) or withholding (very very high) water. I also had periods of high leukocytes but never ever a UTI; and sometimes protein and ketones.

Thank you for the support. Janet-that's exactly what I'm talking about! The one Sunday I couldn't take my morning (75mg) pill, by late morning I couldn't even stand because I was so weak, dizzy and trembling. My dh had to take me to the ER so that I could get a pill (dang controlled substance problem!). And the neuro waved it off and said those weren't effects from missing my morning pill...! And that's how he wants me to wean-stop taking my morning pill. Uh.... I hate having to go from doctor to doctor in itser to get advice I agree with but it's true. I'm sure my family doctor (I love her) will agree w a slower wean. It's just a hassle. It helps a lot to receive feedback that I'm not being paranoid, so thank you! Especially since my body is supersensitive to autonomic imbalance; perhaps not everyone responds so poorly but some of us do!

I'm concerned that weaning off lyrica will make my dysautonomia worse. Has anyone here tried? I've been on 150mg for 9ys. I asked my current neuro about going off it and he said sure, as he didn't know why I was on it (my neuro back then thought that my sudden onset shakes were maybe partial seizures and said lyrica could help). Since I no longer think they were seizure but, rather, autonomic and/or adrenal, it seems logicalish. BUT the neuro cavalierly said to cut the dose in half, then stop. The one day I ran out of pills and couldn't get a refill (a Sunday), I eventually ended up in the ER from slow onset dizziness then heaviness which progressed to violent body shakes that would not stop (the ER nurse was a Jerk, treating me like a junky and not believing I was given it for seizures!). I have read that it's hard to wean off of, and my health is precarious-seems like I tiptoe around so that I do not become dizzy or lightheaded or get the shakes. This wS probably a stupid idea on my part, compounded by the neuro's lack of appreciation for lyrica's weaning sude effects. He completely dismissed that skipping a dose caused dizziness and then body shakes... How risky will it be for me? Any suggestions?

Years ago when I was initially very sick and my famdoc was testing up the wazoo (for fatigue and postural hypotension that was continuing after my seizures were stabilized). He tested 24 hr urine, for pheochromocytoma. My results were the opposite-abnormally low NE and Epi. I was referred to an Endo, who eventually diagnosed me as Adrenal Insufficiency. That was years before my autonomic symptoms worsened into dysautonomia tho, so may not be relevant.

http://www.nature.com/scitable/blog/mind-read/alcohol_sleep_and_why_you. Google- Alcohol GABA rebound - and you'll find articles explaining how alcohol increases the effect of inhibitory GABA initially, with a rebound excitatory effect (via Glutamate) later in the night. I learned that cheap beer causes an extreme rebound effect (as in literally running around the house because my head felt it was gonna explode) in the middle of the night. Awful! But IPAs and, for some strange reason, wine do not cause this problem. It doesn't make sense about the wine as I'm normally ver sensitive to sugar-otoh, sugar makes me crash/fall deeply asleep so maybe that's why it actually works for me, now that I think about it!

As part of the calming down process, I kept having to go eh hem #2. Every time. Wave after wave. For many, it may be true but this is what happens to me periodically. And it bites. My body either overreacts to the adrenaline or overproduced adrenaline. It ma or may not have something to do with my adrenal insufficiency why I respond differently, as I think you are suggesting. Thank you for your thoughts.

I don't know about mast cell problems either. But I've had on and off swallowing problems for 12 ys. Who knows why-it's very complex w an autonomic component, too. But when you are having trouble swallowing, you can go in and swallow drinks w a tracer in front of some X-ray (or whatever) machine to see where exactly you have the problem. When I was experiencing MS like symptoms a long time ago, it was the back of my tongue not pushing food back. Most often these days, my epiglottis doesn't trigger and I choke/burp on water (!). The doc said it was usually seen in 70 yo; never mind I'm in my 40s.. Good luck!

Andy, Any chance you're experiencing a seizure? Your description sounds a little like an aura. I mentioned elsewhere that my doc wants me tested for reflux to rule it in or out, for starters. But here's a bizarre observation that may or may not be relevant. I sometimes have these in the evening. In the morning, urine us supposed to be concentrated. One time after a nighttime breathing episode, I tested my morning urine and the specific gravity was low! So I wonder if I was, indeed, holding in water which I flushed out in the morning. Anyone else have test strips (I had to buy them through Amazon cuz they're not sold locally) to test this?

I've had Hashimoto's since high school so it was the first problem, by far. Late 20's dry eyes but wasn't diagnosed w Sjogren's until my 40's. I've had MS like symptoms (VERY bad mid 30's) and my new neuro last year said that Sjogren's and MS can present the same so if MS wS ruled out, Sjogren's is probably the culprit for a lot of my problems. <shrug> no other docs know this so it doesn't help much. I did start on plaquenil and it seemed to be helping w some urinary trouble (long story but is worse with less steroids so us probably in some way related to inflammatory process), but then I had an allergic reaction -trunk rash-and stopped taking it. Fwiw

Last month, I would've said it was mostly at night. However, it's been evenings and nights this week. I started prednisone and a few hours after eating lunch (so, ~7 hrs after taking low dose prednisone), I notice I'm feeling bloated and short of breath. It's very uncomfortable. I am able to eat dinner fine (but I don't eat that much) and I'm taking a smaller 1mg) dose of prednisone at that time. However, I had trouble at bedtime being short of breath (significant stress after dinner-dog had an accident all over the first floor...). My family doctor wants me tested with an upper scope to rule out reflux. Maybeee but I still think it's very low blood pressure mixed in with autonomic dysfunction.

I when I was diagnosed with adrenal insufficiency many years ago, the Endo told me to take my cortef 2x/day. Since I was already taking medicine 2x/day, I threw my cortef I with the other pills-at breakfast and at bedtime. I did this for almost ten years. There were times-in hindsite, during high stress, when I would wake up in the middle of the night with tachy and then the autonomic fallout from the adrenaline (shakes etc). I too was prescribed Xanax to help in these situations. Only when I stopped taking my evening cortef-and no longer had these severe tachy bouts, did I learn that i wasn't supposed to be raking my steroid so late at night! It's "activating". With my newly started prednisone, I take it at 6pm with dinner. Sorry you had to go through that. I know how awful it is. Ther were a few times where I literally ran in place (in the family room, to not bother the dh) because I felt I had to keep moving or my head would blow up. And then the subsequent crashes the next day from exhaustion yeah, don't take that stuff at bedtime!

I have generally low blood pressure. Times when I've had problems with feeling dizzy and weak right before the shakes set in (most often at night so I have to be quick and not fumble), my pulse pressure is very narrow. I hypothesize it's from shock, and the resulting adrenaline causes the shakes. Regarding the UTI diagnosis-docs very often have initially suspected me if having UTI because when I'm symptomatic (ie at the doc office or in the ER) I am positive for leukocytes. I've been doing home urine test strips so I have seen for myself how it is usually negative (normal) for leukocytes but I'll go through spells where it's positive, usually correlating w symptoms. Anyway, subsequent cultures by doc offices are always negative for bacteria (and nitrates or whatever the other complementary result is), so it's never UTI. When I was last ambulances to the ER (I was having urination issues that I now think are more water balance issues than bladder related), shaking etc, the ambulance lady kindly offered her opinion that it was classic UTI presentation. ER guy tested-nope. It was adrenal crisis (and then docs ignore the positive leuk result because it's no longer relevant to them so I don't know why this keeps happening). Sorry for straying off topic but wanted to add that...

Wondering if anyone has experienced this. I'm pretty sure u was experiencing rapid (five minute) cycling of sympathetic/parasympathetic cycling, for several hours yesterday. I know probably why-my doctor changed my steroid medication and I had forgotten to take my evening prednisone the day before (but had taken my morning pill so..?). Anyway, what had happened was -I was about 15 min into eating my lunch when the world started swimming. Scared (recognizing this symptom but not thinking clearly), I stupidly stood up. Dizziness and heaviness increased, onset if tachycardia. Woo, sat back down.....still experiencing tachycardia....then the jerkiness progressing to (only mild, tg) shaking. Then, as that calmed down, I had tummy cramps and then had to go #2 (sorry for tmi). Sat down feeling better tho weak and trembly. Resumed eating, raising my feet on my desk. Felt slow onset of tingles in specific areas of my body (which I know from past experience is slow onset sympathetic activation), then tachycardia, then shakes (at least milder), then goes away, then bathroom (see above). Every time I thought it was under control and I stood up, it would start all over again. Drinking water was NOT helping. Anyone have suggestions for when this happens?

I try to be consistent with my blood work in irder to be able to compare results longitudinally. When I have a choice, I get it done in the morning, before food and pills. Therefore, I can see a pattern of consistently low EGFR. As in 53 last year and 59 last week, both below the 60 cutoff for kidney disease. I don't have kidney disease but it does make me wonder why. I *do* have problems producing urine in the middle of the night and early morning, some times much worse than others. I used to think it was my bladder function, but then i started wondering if I just wasn't making enough. New digging is making me think -light bulb- that the abnormally low EGFR and low production of morning urine are related. But WHY? Liw blood volume or low blood pressure at night, the kidneys hold on to water (is my newest understanding). And/or in response to "stress", the body produces more aldosterone, or more adh can hold water, too. Not producing enough urine is worse when I don't take my steroids at night. Any thoughts? I'm pretty sure I'm finally on the right track but can't quite see the connecting dots yet (and don't get me started on how arrogant and unhelpful my urologist has been). Anyone else have these symptoms/problem? Thanks for thoughts!

I was on cortef (targets both receptors) for many years before switching "cold turkey" to prednisone last weekend. I had major problems with postural hypotension in the evening (when natural cortisol is lower). You're right-two different things. My understanding is that prednisone is more specific for, for example, autoimmune (anti inflammatory properties), whereas florinef is used for the postural hypotension in dysautonomia. Cortef for people with adrenal insufficiency. That's just in general, but everyone is different. Even while on cortef, I sometimes needed florinef.

I have exactly what you are talking about. I write again about it in a thread about night breathing problems. When I first was experiencing (jerky/shaky spells that some would call panic attacks), they were similar in timing to my grand mal seizures that were under control w keppra. My Neuro and I thought maybe they were partial seizures so he added lyrica. I thought it helped and have been on that combo for about ten ys. (75mg am/75mg pm; one time, they were worse after another med change so my neuro had me double the night dose...and I started hallucinating!! Very not good!). But I still have milder versions. I now think what happens is my Bp drops too low at night sometimes, hr too low, and my body responds w a flood of adrenaline...resulting in the over response of shaking. Yes, after exercising lately, every time. Which is weird because I've been working out fir years I've been told that antidepressants help to even out the body's physiological response to stress but haven't gone there.

My understanding is that it has a longer lifespan (than, say, cortef) but not enough to build up. My Endo said 6hrs, so I take 1pill w breakfast and 1pill w dinner. I take it for adrenal insufficiency, but I have autoimmune problems so am hoping this recent switch from cortef to prednisone will be good for me. Oh my point was that since I take it to replace/support what my body is supposed to make, I don't expect negative side effects. But it's very low dose. 3mg total. If he's on a high dose, be SUPER careful about tapering off because it can result in adrenal insufficiency. Sorry if you already know this

I'm sorry to hear that you are concerned about MS. That's a very scary place to be! I don't know the answer, just wanted to say btdt and send {{hugs}}. I don't have EDS but my sister and my son have the hyper flexibility signs (to the point that my sister's arms fall out of their sockets). among others. 12 ys ago, what I call The Time When My Brain Blew Up, I had sudden onset neurological problems and the docs were sure it was MS. I was in the hospital for a total of 10days, two visits within a month, and they tested up the wazoo. Two lumbar punctures, MRIs of everything, nothing to support MS. I saw a new neuro last year, and got a new baseline MRI, which showed diffuse white specks "of no importance". A specialist neuro I saw after that argued against the "normal" interpretation, but said that since I was functional still, probably wasn't MS. I DO have autoantibodies for Sjogren's, and he said the two are symptomatic twins (I'd never heard that before!) Best wishes!

My symptoms have always been related to my monthly cycle, going back into my 20s. Since my symptoms worsened 12ys ago), I have gad different sets of problems, around ovulation vs time before my period. Since the major one was catamenial epilepsy, I'd read that progesterone only pills had a calming effect on the brain, so my doc let me try them. It helped! I was in that for several years until I moved and a new doc, ticked that I was taking them "off label", refused to prescribe them. Problems ensued. Ys later, new doc, lotsa cramping and intense cycles, and my doc and I decided to again try the progesterone pills. This time, I experienced really scary bought a of heart arrythmias almost immediately and couldn't tolerate it at all! Maybe because if my age? (Close to 50) fwiw

Follow up on a thread from last week regarding experiencing breathlessness at night-had another (milder) experience Wed night and made some observations I wanted to share (along w some new thoughts). I was lying there in bed feeling like I was very still. For some reason, I recognized the stillness as being weird so tried to induce anxiety, and COULDN'T. No reaction except then I started feeling like I was out of breath! (Fwiw when I first tried to put this into words for my dh, I couldn't, but later it came to me that that's what I'd been trying to do-create an emotional/physiological reaction, which I couldn't). I think that that is significant but not sure what it means. My autonomic nervous system was less responsive? But my breathing reacted, leaving me hyperventilated? Anyone help? And during the night, I kept being jerky-reactive to stimuli such as my dh's sudden movements and when trying to sleep which, in the past, I've associated hypothetically to a hyper responsiveness to adrenaline (caused by startle as well as a drop in Bp). Here's the newest twist-I discovered that my blood EGFR is below 60, and other blood results suggest maybe a problem w acidic blood. The two bad episodes in the past two weeks were BOTH after working out in the evening and not other nights. Working out increases (lactic)acid, I believe...and if my body isn't removing acid successfully, cod that contribute to greater autonomic dysfunction? Anyone know? I don't have global kidney disease that I know of fwiw but I do have urinary problems that fluctuate depending on time of month. Thank you for thoughts!

What's elevated if your lymph count is elevated? If you have several low values, something is elevated to result in an elevated absolute lymph #, I would think.

I believe it's only elevated during active inflammation. When I was hospitalized in major crisis of unknown origin, I was experiencing sudden onset of more severe symptoms which they initially thought were due to MS. At admission (again, in crisis), my CRP was elevated. It was not elevated by the time I was releases (well, that was 6 days later but I don't think I remained positive during the stay. Really was a crisis-associated protein). Do you have autoimmune problems, too?

Have you been evaluated for adrenal insufficiency? Secondary AI can be like this-you are normally ok but a bad stressor or physical exertion will tax someone w Secondary AI because body dies not respond w additional cortisol to compensate. When I am experiencing problems immediately after working out-trembling and light headed, I attribute that more to dysautonomia. My pulse drops (no longer exercising) but my Bp does not respond. I've learned that haying down for a bit (to allow for catchup) and drinking electrolyte fluids helps.

Yup! I used to have them periodically when I was taking a nighttime dose of cortef (5mg). I didn't know better, so took it right before bedtime, which was around midnight. That's too late! I have not had them since I stopped taking a night dose-only positive! (Had other problems since then) They were very autonomic in nature. I'd wake up w a start and tachycardia, tingling and nausea, flash if heat then my whole body would start trembling. The severe trembling would last for about 15, but that may have been because my neuro had prescribed Xanax (v low dose), which may have helped. I initially had nocturnal seizures in the same circadian pattern-at around 3am, before my period. So I always thought if these as related, if not as severe. I think what happened is that my Bp and/or heart rate drop too low and my body *shocks* itself w adrenaline. I get those still (in fact, earlier this week) but only a sharp jerk awake and my heart'a racing. I think, for whatever reason, the cortef maybe made my body over-respond to the life saving adrenaline, setting off the cascade if autonomic symptoms. Dies that make sense?

If you think it could be cortisol, an Endo is who you would see for assessing function of your HPA axis (cortisol). I have problems w low Bp and severe trembling spells. After reading a lot, my best guess us that those episodes may be due to an "adrenaline shock". I also have problems after eating, ranging from mild tremors to complete crashing where I fall asleep and can't move for hours and hours. After trial and much error, I learned that my body can't handle carbs. The heavier the carb load (er pure sugar around holidays?) the more severe the response I now follow a modified diabetic diet where I try to eat smaller more frequent snacks w low sugar content and which are always comb w protein and fat (to slow carb processing).