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Everything posted by WreckingHotelRooms

  1. Maybe, but it's really not something i wanna touch again, i was in an andernegic state, i had to take benzo's to get me down again, my doctor wants me to avoid it too, so no chance of getting a patch. Oh I had to read up there on MCAS, first time i've heard of it. Interesting that I am having a lgA, Cortisol (Spit) DHEA (spit) test this week. IgA from my quick reading seems related to MCAS. Yeah i've had two Tilt Table tests, both were negative however my Adrenaline rose but my heart did not. My adrenaline rose to a lot of things though.
  2. Pills, they made me stimulated which is the exact thing I was trying to lower. Doxazosin is the best thing i've found and it's still not doing it. I am triggered by ANYTHING, most the time i just wake up stimulated, big eyes etc, which makes sense as the line "no nocturnal fall" which i was told was very unusual. My adrenaline is over the range too, but i mean, all of that would trigger me if i wasn't already "wired".. if i'm shattered / tired, even changing room can flip the switch. What are you or are you diagnosed with anything btw? Edit: even writing this
  3. Yes i've tried Clonidine, it actually added to my stimulation, to no ones understanding, it's what St.Marys suggested London
  4. 28, Male, 5, 11", 18 Stone, (Xanax 2mg, Dozazosin 1mg, Escotalipram 20mg) Smoker. £7,000 and a many years later, I have something on paper, but no diagnoses as such, I pass (by this i mean i fail/seem to have) the adrenaline fatigue questionnaires but that's not recognised by anyone I have been to as a diagnoses. I am writing because I am in an extreme burn out, "Wired and then Tired". This burn out however is longer, it's been 25 days, where i usually been up normal hours one day (stimulated) then crashed the next. This month however I'm struggling to have one day awake, in bed 16
  5. We have no name for it but I've been diagnosed. Look in my history if you are feeling stimulated, i've had a couple of members here share similar stories. Finally after 4 years of 'extreme stimulation of my Nervous System' I finally failed a test. (Some) Symptoms: Not sleeping for days Sweating heavily Tremors (Shakes) Dilated Eyes Feeling Stimulated I knew it felt like adrenaline but 24 hour catecholamines or a Tilt never showed anything... What did then? A TILT TABLE Test WITH Catecholamines done twice with 45 minutes rest in-b
  6. Yes certainly, I am going early January and will come back to this board with any big updates, especially because my case is very strange I am going to let the world (forums) know. Are you UK based? It sucks we have to go so out of the way. As for stimulants, I actually have some about 4 20mg and 5 30mg Adderall XL in my cupboard. This was tried by a private psychiatrist who specialises in ADHD but NHS registered, unfortunately, it was the total opposite to what I need, made my stimulation rise x10 within minutes... however, my experience will have nothing to do with your case.
  7. Hmmm, i've pages of bloods I actually uploaded to Reddit, I will have to get it out and scan for these autoantibodies, think that's a new one on me, but my bloods are extensive, i'll give it to the NHS on that one, font 10 for 3 pages, had a lot. Thanks for the advice Oh this is really interesting thank you Yes I have been advised by many to fly to London to see Professor Mathias, so for now this is my plan, thanks! http://www.hje.org.uk/consultants/professor-christopher-mathias/ Yeah, just after 3 years the money well is beyond dry.. so annoying when you just want an
  8. https://imgur.com/a/Vxpl1A9 - Made this page, to show some of my symptoms, only started taking pictures, i haven't uploaded the fever ones, just imagine me soaking as if i was caught out in crazy rain like a soaking... All my bloods I have to hand are there. Thanks, it is a joke, talked to the doctor (one was seeing my mum today) and he said two things that wound me up one was "looks of people live with things undiagnosed".. i'm like yes but I can't function and you won't treat the symptoms. Oh and it's not 2 years it's 3-4 year waiting list. Yeah I think I am best to fl
  9. Interesting, i'll ask for a spinal tap, see if my GP can order one, hmmmm, that's really a stab in the dark. I've done a real Tilt Test, was perfect in blood pressure and heart pressure and my Dublin Specialist said it's defiantly not POTS, my symptoms are too odd, she said she could see how stimulated i was but based on my large pupils and tremors agreed it was not mental health (I got confused for bipolar for a while, hence a lot of those medications). EKG done many times, it's all good. I am constantly stimulated, i 'CRASH' with Xanax and then a conversation or making dinn
  10. Yeah, TSH, T3, T4 (they for some reason love to skip this one, made them do it), Yeah Antibodies, i've got 4 pages of bloods, as my doctor says, on paper you are as fit as me. He can't explain the excessive sweating or tremors or any of it for that matter, but that's not his fault, no one can. I wish some version of Mayo Clinic was here, where you could stay for a couple of days, but then again, I bet that's a lot more than i'm thinking it costs.. Can't wait 2 years to start the process, but I can't really do much else. Randomly testing the Nervous System is expensive business, hen
  11. Thanks for the reply. Yeah worked with an Endo for 7 months, we had a feeling it was thyroid, turns out it's not, even went to another one privately as I couldn't believe it wasn't... Yeah I have had my Catacholmines, just edited my post to include them, no one I have shown have been remotely interested in them and the lab said they thought it was normal, although to me my Adrenaline seems higher than most I've asked but in range is all they care about..
  12. Hey everyone, I read mainly Americans who go to Clinics where you get a team of doctors and after a few days all being well get a diagnoses...I was wondering what you call that type of hospital or care? and if there is any such thing in Europe privately? I've spent 3 years, loads of tests and over £4,000 and the only thing we have narrowed it down to is an Autonomic Nervous System disorder, I can't for love nor money get my condition diagnosed, even the best Neurologist in Ireland on the board of Harvard could only tell me it was my Sympathetic Nervous system.. this can't go on and
  13. This is just a message to be archived so that if anyone is searching for a specialist in Ireland, Beacon Hospital from my experience just outside Dublin, Ireland is very good. I live in the North and paid privately, truly feel in good hands. I might have missed it, but didn't see any listed in North or South of Ireland listed under Physicians. The doctor I seen was a nervous system specialist, is trained in Dysautonomia, POTS and other nervous system disorders. Would recommend.
  14. Sounds wise to me. I don't have the information for you, but just thinking back to my school days, it would be a good idea to have a small paper with a few bullet points in your class room, maybe on your desk? that everyone knows about, a 5 minute chat about the subject and give someone the responsibility of finding your boss (and another if they are off). It's also nice as they know what is wrong with you for instance when it's warm and feel more involved and therefore sympathetic. I think it's a good idea
  15. Does my post ring any bells or not? I also have Depersonization, only get Derealization under huge anxiety in passing. Yeah i've got dizziness etc. But the difference is I am totally stimulated, i don't have 'insomnia' as I don't sleep for days, it's way past that, it's totally stimulated, not sure if this is how you feel. Mirtazapine as people suggest (does nothing to me), Zoplicolines don't knock me out. Only thing i've found so far aren't viable, namely Xanax, tried 15 non benzo medications with no luck. paradoxical reactions to EVERYTHING sounds like me, be interested if you can relat
  16. Thank you! it's the time that drives me nuts here, it's been at least 6 months waiting for a letter and no word. Awh that's common for many with MRI's, i found it relaxing. I think you can do it under full anaesthetic, i was reading someone who insisted on it and was allowed, just an idea if you ever feel you need it. I know a friend who got a sinus operation and was given morphine for days, I hope i'm not getting what he had, either way beats this dull head pain. Ps, anyone have vertigo? doctors are very mixed about Sinuses causing vertigo
  17. Yep, I have had it for over a year in the frontal sinuses both sides, MRI's x2 and 2x CT shown it. I can feel it, i've a heavy sore head all day. I'd love to know if this is why I have constant vertigo, time will tell. Anyone get vertigo with it? I am going in for an operation as antibiotics, sprays, tablets have done nothing. I don't have the name, I just know that's what my GP said is gonna happen when i see ENT. Sorry I don't have much to add, but it's not fun.. the operation doesn't seem that big of a deal, it's done under local, in and out job from what I know.
  18. Sorry to hear that, I had TT today also that showed nothing so I know how you feel. My next appointment is an ATOMIC Neurologist - however I have clear nervous system symptoms, like tremors, sweating a lot, huge pupils. This doesn't really sound like it would be any help for you. Wishing you all the best though
  19. He did urine that day, really had no answer. Then again he can't explain the fevers, shakes, huge eyes and no need for sleep neither. Everyone I've met so far is very confused, but as said think if i can make it till i see this autonomic specialist I might finally see someone who gets it. Seen a general Neuro once before and he listened and was very lost, said if it was gonna kill me i'd be dead two years ago, as if that was some type of answer.. I seem to live in a constant Adrenergic storm with Dysautonomia symptoms. Do you know if it's possible to have both these and not have Hyperadre
  20. I did, he had no answer, he and everyone to date has no answers for me about anything. But the weight thing is odd. Called my GP, finally got the answer, it's a no, they stated it's a stimulant, my private psychiatrist says it's not, so until i get a letter to someone higher, it's going to have to be a private script. Unbelievable. A lot of the POTS stuff I don't relate to, we will find out today though for my Tilt Test. Sounds like you've been through a lot. I have fatigue and brain fog, know them all too well. I just don't get how mine can appear to have came on so fast. You
  21. 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 '
  22. 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
  23. 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 ful
  24. 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 fittin
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