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I did a catecholamine test, was very disappointed in the results but then again i'm not specialist, just thought Adrenaline would be off the scale: Adrenaline 102 (<147) Noradrenalin 240 (<573) Dopamine 1590 (<3270) Tilt test with a cardiologist Friday but I don't think that's going to help as I don't think I've POTS because I am having more an issue with feeling constantly 'wired/stimulated', don't relate to the standing / sitting part. I live in overdrive and only high amounts of Benzo's so far out of 25 medications can stop it, even bring it down the next day 'off' the medication until the adrenaline shots up my veins or something stimulates me and it triggers. The best for a year they had was bipolar 'diagnoses' but after 25 medications including Quietapine 800mg, Olanzapine and Lithium having no effect, and my physiatrist refusing to adrenaline shooting down my veins, dilated eyes or shaking which he could visibly see, I just said enough and my GP agreed. Was like talking to the wall for a year. Think I'm looking at a ANS disorder. I have a atomic specialist in a few months, I pray this is a diagnoses once and for all. It's been 3 years of feeling very ill with no one having any ideas until recently, when a Scandinavian doctor said he had seen Adrenergic storms it fitted it with the shakes, sweating, eyes, feeling stimulated but not elevated mood, no need for sleep etc. (had spent thousands and been to 70+ appointments with specialists, Endo, physiatrist who was awful, MRIs, CTs, you know the lot!) I hear you on those symptoms, although; cold feet and hands, roaring in the ears would be two I don't have. AS: "Their judgment is impaired, their senses and pain threshold are heightened, and the level of the adrenalin in their bloodstream is more than most people ever experience.” This is so me, just dunno why that test didn't come in huge adrenaline levels. Dysautonmia seems to explain why my pupils are huge and temperature is all over the place. "The most common scenario is the sympathetic nervous system remains dominant and the parasympathetic rarely turns on, when this occurs the body remains in fight or flight. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control." Sorry I know you know all this, i'm just trying to get my own head around it and talk with people who actually know stuff on the subject, my GP is great but had never heard of POTS nor Dysautomomia! Sorry to hear that, was the disability related to POTS? (sorry to bring it up, my Mum has MS, so i really do sympathise) How long have you been on medications? and diagnosed have they made a difference? I need to get back to somewhat normality at some stage... My new physiatrist agreed it's atomic symptoms but has written a recommendation for Guanfancine as she thinks it will bring down the stimulation, which makes sense as it's written in a study I read on Dysautonomia but... my GP surgery say they are going to have a meeting, that means, i'll need that privately. Sorry this is long ://

I hear you KiminOrlando.. If i had KFC buckets for the last two weeks I couldn't have put this weight on. Again like you my clothes don't even seem like they were mine. Before I got sick I was a medium T shirt, now can't fit into an XXL it's absolutely shocking. A few hours later, I am still having hot flashes and huge eyes (i mean massive). I hope we can stabilise this, feel so ill.. Ps i don't think I have POTS, more Dysautonomia with adrenergic storm's or something

Yeah, my adrenals have been checked many times, TSH, T4, T3 etc, I rang my Endo today actually, to check if he wanted to see me again, he has written a report saying he is very happy with all tests and that i've been tested for everything suspected so I am discharged. For Cushing's I did 4 24 Urine Tests, MRI and CT, so just got to say close, but no cigar. On none of those things. Beta Blockers right now is literally it. Over the last few weeks even my face is bigger. Hmmm, I hope this atomic specialist knows what's up as this thing has a lot to answer for. Today has been full of hot flashes, shakes etc. My nervous system seems like it's in a wreck. As much as don't advocate such extreme weight loss programs, i need to try something extreme. Bought 30 days worth of 2 smoothies a day for lunch and dinner, you are allowed 2 banana's and 2 coffees, oh and nuts in-between. Gonna do that religiously for 30 days and go into my GP's scales, if i have not at least stayed the same weight something is very wrong. I believe my metabolism is basically dormant, not sleeping for days and being too fatigued to exercise from exhaustion. When i do try it sends my adrenaline crazy, even a walk, 100 yards later and i'm overheating. Heck I can be normal temperature now in the shower, come out and within minutes be in a full sweat as if my temperature gauge internally is broken.

Yeah my thyroid has been checked many times, Prolactin also. Ferritin I'd say because I have 4 pages of size 10 font of bloods, both my GP and Endo thought I had Cushing's for a while but we did a few tests, urine, blood, mri's and ct's and as well as it fits, I guess it's just it. Sodium imbalance, it's funny that you mention that Bluebonnet08, the last week i've been feeling dehydrated, it's why i went into my doctor after seeing him 2 weeks prior. Feels like i'm holding so much water, is there any good way to get rid of it? The thing that's the strangest, apart from now nothing fitting in two weeks, is my face doesn't even look the same, it's more round, i have no idea how i could put this type of weight on so quickly, nor did my GP. I have a calorie counter, 1300 calories is my limit...dysautonomia matches so well but rapid weight gain I don't really see mentioned...

In the last 2 weeks I've gained serious weight. No change to anything, but now nothing fits, can't even get my t shirts over my belly, the difference is unbelievable. So much so that when i walked into my doctors 2 weeks apart he was shocked and got me straight on the scale, telling me that i was a completely different shape than i was just two weeks ago. Still brings us no closer to figuring this out, t's shocking. 2.5 years ago I was 12 stone something, now 19.5.. way way way over weight and i can't seem to do anything about it. Nor could have done it when I felt well if I tried! Is this even possible for Dysautonomia? got two months to wait to see a specialist and a tilt coming up this week. I just don't see many people from my searches with any more than a stone over months, not weeks. Gets me back thinking about Cushings, but i've been promised i don't have it, i've done so many bloods, MRI and CT's and seen two Endo's, who said the symptoms are similar but no signs of it at all. Being this ill sucks..

Wise words.. Okay, i'll do that. Thanks WinterSown

Thank you. Strangely they told me I could all my meds including Beta Blockers , but I am not going to take them as they purposely bring down your heart rate so what's the point IMO. Thanks

I've a tilt table test next week, finally! One thing that's concerning me is I have vertigo / dizziness and during a CT it showed up thick frontal Sinusitis (head), this is what is believed to be causing the dizziness that I have, if this is the cause lets say, could this confuse a Tilt Table result? Also, i don't know how I am gonna do a tilt table, i my temperature goes crazy from minor things at the minute, like even moping the floor, it's like i've no temperature control, even a shower, I can feel totally normal, get out and within minutes be in some type of fever state, but that is probably a sign or clue to something.. i don't imagine i'll make the whole test. Thanks to all the members, you've been really helpful so far

Thanks for all your replies. I'm starting to move away from Hyper Pots. I experience Adrenergic Storms and although I have nearly all the symptoms, I don't relate to the standing and sitting difference seen in POTS which I understand is like the main part of the diagnoses. I feel stimulated constantly. I think I am looking at Dysautonomia, I know that is just a blanket term, but if I could get that diagnosed it would be a good start. Quick example of the type of 'adrenaline' I am experiencing. Just an hour ago I made dinner, Fajitas, made them a million times before and would before this been a walk in the park before this thing started. Second I got two pans going and some stimulation I went from feeling light stimulated (constant) to total stimulation, a surge of adrenaline, my eyes are still huge an hour later, i've a headache, sweating and can't cool down. High on adrenaline, well I call it 'wired' as there is no happiness with it, usually adrenaline and restlessness.

Olayak - Hmmm, okay I am going to a Neurologist hopefully in 9 weeks, so i hope he has some grasp on Dysautonomia in general and adrenaline disorders as my adrenaline is through the roof somehow, my eyes, the tremors, the no need for sleep, goes on and on. Thanks! I will be sure to not give up the search

As long as it shows up in all types like you said, i'm good, we will find out in a few weeks, Dysautonomia is i'm certain, POTS not so sure. Dunno how i am even gonna do the test i've got so much adrenaline 'feeling wired' and not sleeping, not gonna be fun! Pistol thanks very much. Ps, I'm in Northern Ireland, not sure what says i'm In OZ

I'm confused, can a tilt test show all types of POTS? (i think i'm hyperadrenergic) Just off the phone and i've got one booked for 3 weeks time.

I've just found this again, hoping you might get an email to bring you back here, I am wondering did you ever find out? I am still looking, going down the Dysautomomia route more now after wasting a lot of time with endocrinology

Melatonin doesn't do anything unfortunately. Benadryl is worse, took a lot of it one night and ended up in hospital after being awake for days to try and sleep. Still couldn't make me sleep. The only thing that stops this wired/tired craziness is really Xanax. Just flipped again, was awake from Wednesday 10pm till 2pm today (Friday). Was dilated pupils, the lot, then slept for 6 hours, just awake, now i am shattered and anxious. Makes no sense. Thanks i really appreciate all the comments i've had. Haven't really seen anyone with my story with Dysautonomia, which this cycle would break. It doesn't even go say three days awake, one shattered, it literally has no pattern. Nor am I anxious when i'm wired unless it's extreme and i've got the shakes, nor do I always feel anxious when shattered, no reason to this thing..

No bowels issues. I do find it hard to pee completely though recently. I've had an EKG. I am double joined which is why I was told to go for a private tilt test by a cardiologist but he had never heard of any of these symptoms yet knew a lot about POTS. Thanks so much. Yeah i've kinda been waiting for someone to step up and take old of this, but most like my endocrinologist just thinks it's not his area, my mental health team have exhausted that angle, so I guess it's all down to a neurologist now.. i'll keep you posted, going to the doctor next week, wrote a letter to hopefully get taken more serious, my GP understands this is h*** and feels sorry but just does not (and met with 12 doctors at his practice to talk abut my case) have any idea. We really thought endocrinology would have brought up something but my next meeting is a meeting about getting discharged... even been to Harley Street, which I could just sign myself into hospital and them see this 'tired' and 'wired' thing for themselves. Yesterday for instance fell asleep 7pm-10pm watching the football, woke up and felt normal for about 30 minutes, then the stimulant started and I now have been up 10pm Wednesday and it's now 4.30am Friday morning and no sign off sleep, so been awake 30.5hours so far with 3 hour sleep and i am not tired.

Did you ever look up adrenal fatigue? - Yeah this actually what my doctor thought i had a year and a half ago, 3 NHS endocrinologists trips and 2 private they assure me my adrenal glands are doing well, TSH, T4, T3 etc. Of my adrenal gland, no I haven't. I have been tested for Pheochromocytoma- (catecholamines top of the page) and told i have no cause for a scan. These are both areas that i thought myself but as i said 2 endocrinologist have said it's not. I am tempted to get a scan of my adrenal gland anyway, but with referrals you don't always even get the chance to pay for what you want i've found.. Love the interest, thanks for all the replies so far

Yeah, sympathetic nervous system explains all my symptoms the more I look into it, but what actual disorder I am no closer to. The shrinkage, the dilation, the stimulation, adrenaline rushes and the shakes are all nervous system symptoms. I've had eye disorders ruled out and they react to light okay, as i've shown doctors the many pictures i've taken with huge eyes and they have looked at them. In three years though no one has even suggested what it could be, most are lost when they ring up the hospital or check my notes to say 10 days awake in hospital confirmed, at that point they are lost. I just need to find a good neurologist who specialises in the nervous system which seems hard to find. I've seen one who said "if it was neurological with your symptoms you'd be dead" it was £240 wasted for 15minutes. My mums neurologist said that he should have actually investigated it further, so I am going to book another neurologist this week, around 8 weeks wait. It also seems obvious to me that if 15 other medications which were all pretty heavy like quietapine 800mg etc can't make me sleepy but clonazepam can bring down my eyes and shakes it has to be something in this region, considering it's a nervous system suppressant. Funny that I am not allowed them under the NHS, yet know people who get them for anxiety never mind the h*** i'm living. I just thought on reading Dysautomomia it could be it, it was the closest thing i've ever read with the symptom listed on this website 'feeling wired', yet the actual POTS thing i don't relate to. I also know mine started after 2 years of stress which I am sure is taxing on the nervous system but don't know if it would cause Dysautomonia, from my understanding this is a general term for an out of balance nervous system (will research tonight further). I do question anxiety, yet I am 'wired' right now with no anxiety at all, yet i am elevated and can't sleep, it might have caused this mess, but it's not causing it, if you get me

it's happening right now. Wired 4am, feel stimulated, no anxiety, wide eyes, dilated, can't focus, feel slightly 'giddy'. No mood elevation, no racing thoughts, just lots of false energy. Won't be sleeping tonight

Yeah that's the strange part about it, i thought with wide eyes and shakes at the time they would be a lot higher in number. Adrenaline is 2/3 of the range which I guess is not ideal but I can't find a single person online's result to compare it with. My GP didn't order it so all he will know is it's in range...

See norepinephrine levels are on the top of this thread, they were disappointingly low all round.. I'll not take any beta blockers and check out tachycardia hopefully tomorrow, that's if i don't wake up shaking, then i'll probably need to reach for them. Yeah good point, i'll get the blood pressure monitor in and start taking it in different stages, i'll get that organised tomorrow. The wired state won't be too long away, crash only lasts a day or two, could be a week or two till another proper crash. I'm never pale or cold. Usually sweating, dilated pupils, stimulated and when it's really extreme just out of it, not like acting strange just feeling so stimulated I can't even keep on track to make dinner well. Bladder shrinkage happens all the time to a degree, but when i am really 'wired' my two manly areas physically shrink to the point it hurts, my doctor thought this was psychosomatic so I showed him and he was shocked.. and could understand why it would be painful! Fatigue - I go from feeling stimulated, to not, my veins don't feel like they are rushing as much, my fatigue always starts after a sleep. It's easy to explain as it happened today. So I slept 2am and woke up at 9am, my body ached all over and I couldn't keep my eyes open, by 2pm my mum was in my room to talk to me and i was struggling to speak. At 7pm I got up out of not wanting to be in bed and having finally got the energy, i ended up having to sit at the kitchen for about 30 minutes before I could stand for 10 minutes and make a stir fry, everything was super hard work and slow. Pretty much like I had been run over and was half asleep or something is how I this fatigue

Does anyone else have the extreme WIRED and then TIRED thing I have? I was so stimulated last night, eyes felt like they were coming out of my head, dilated etc, now just woke up from sleeping 2am-7pm after taking 2 clonzepam and i've 'crashed' my body is aching and the wired is gone for now, such an extreme difference

Laying down was 83, standing up 2 minutes later was 91. One thing to note is i am on beta blockers? (40mg 2x a day to stop shakes)

27 male. Just downloaded one. So you can have Dysautomomia symptoms (i've 27) but not POTS (with no heart changes?) I'll check my heart rate soon

Dysautomomia in general defiantly seems to be in the right ball park. I'm not sure if it's POTS as such. I am worried i'll fail a POTS test, can't seem to find a Dysautomomia specialist in Northern Ireland, i've contacted one in Dublin though. Yeah I might do that tonight. My symptoms go in some weird cycle, between 'wired' and 'tired', sometimes I am in buckets of sweat and flushed, sometimes not. It all depends what day you get me on, but feeling stimulated is constant. Pupils sometimes I see slight differences, especially my right one, noticed this about 3 years ago, use to scare me but mostly the more stimulated/sweating/wired/shaky the bigger the eyes, if i am slightly less all that they look very glassy and have that sheen on them

Thanks for the replies. Shellyh - I am on Mirtazapine, but I could add a SSRI I am sure, nothing can take this stimulated thing away yet, I can stay up for days and we are yet to know why. I couldn't believe 'Feeling Stimulated' and 'Easily over stimulated' are on this site, before when I was looking at POTS it was so heart based. I seen a Cardiologist who is sorting a Tilt Table test but seemed to know nothing about these symptoms. M@T - is that something like check my heart (i'll borrow my granny's heart monitor) lay down for 20 minutes, check it before, during laying down and then while I am standing up for 5 minutes?. The only heart thing I notice is exercises is becoming impossible, if i walk up a slight hill my heart is beating out of my chest