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CK1

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About CK1

  • Rank
    Advanced Member
  • Birthday January 11

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  • Gender
    Male
  • Location
    N Ireland
  • Interests
    Music

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  1. 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. I honestly don't think it's that hard to get, it's hard to impossible on the NHS once over 18 (oddly).. but the psychiatrist who is interested in ADHD like mine seemed to be the first thing she wanted to try, granted I do have ADHD, but not like I had to prove or show my diagnoses (which I do have), basically read between the lines. PM for details. If it is the medication that is like the magic bullet then I'm sure you think 'whatever it costs', just warning you though my private prescription a month was £120 with my GP's wanting nothing to do with it... odd as I've had the diagnoses forever, it's always been on my notes and had to spend £400 for my GCSE school exams to get a report... even the pharmacy, took 3 different ones until someone took the script, you'd think I was asking for speed or something, lol, in my experience even psychiatrists here for NHS don't prescribe it, thing that keeps mystifying me is my private psychiatrist who is great does work half the time for the NHS (seems I never get the good ones). If you are expecting me to get a stimulant then my story isn't going to help, since my stimulation started I can't even take Sodafed... when it was never an issue before
  2. 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 answer, surely in my case it would make more sense to watch me for 4-7 days and have me out with a diagnoses, I even think our free health care system should do this in certain cases, would save money long term, but sure no one is thinking that way and with a 3 year Neurology wait they are just trying to get through the backlog asap. Thanks everyone, sorry didn't get notifications (probably in my junk folder), CK
  3. 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 fly in and out of London, I've sent a lot of emails, getting them to read a short page on the situation as it's rare instead of just saying 'book an appointment' is seeming impossible, then within 5 minutes you get the 'oh i don't know'... i'm gonna avoid playing that game.. gonna play hard ball, they can scan a page (read i mean). I am shocked I thought Germany would have amazing health care... I have posted all my bloods they assure me all my Endo levels are normal Thanks, I will keep that in mind for sure! So have I, they would not do it because they said my levels are so good (above in the link) but i'd be tempted to overrule them all, get one anyway. I paid privately for a second Endo and even he said based on my results there was no way. Two thyroid results are on that link.. wish it was that. I also HATE the way everything has to go through your GP even if Private so they seem to have to be reasonable in their eyes.. i've noticed that this is not a legal requirement and top places in London don't seem to care what your doctors think before you, as they like starting again... but todays news of 3 years if i'm lucky was basically 'go it alone son, if you can afford it, if you can't.... too bad'...
  4. 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 dinner can spark it up again, one day I cut my finger and went from 5 to a 9 on my scale, weird thing is, it lasts days, i've videos etc, and the doctors say well adrenaline would last like an hour.. so they don't get that either. . Without Xanax or something to crash this, I just end up in hospital.. although my body is now not able to stay up past a week like it use to... but the stimulation is more intense and temperature control (whatever keeps that in check) has stopped working, I can have a nice shower, or a cold one, either way the change in temperature and i'll be sweating for an hour, and random flashes daily, i mean drenched..no fever though. No questions are good, sorry this is long. i've posted my story on 8 forums, seen so many doctors, dysautonomia is kinda the umbrella i fall under but far from a diagnoses and after 20 medications no one is willing to even try random guesses anymore. Yesterday was the first time I had someone on paper say sympathetic nervous system which i've been saying for at least 1.5 years, as tremors, big eyes, adrenaline, that makes sense but no one has seen anyone who is awake this long, i don't blame them, 3 years ago i'd find it impossible to understand, i've also lost faith in everyone, no one seems to take the case on, even privately, just get blank faces with a 'it's like nothing i've heard of'... I've talked to 2 people on this forum who seem similar but my level of stimulation seems way more intense and constant. I mean it's such a nuts story, whatever this is, it's sure going to be interesting if I can ever get it diagnosed.. madness. What do you have to do in this country to be admitted like to hospital.. i've tried many times. One weird thing, I have pictures before and after.. i drink say 3 bottles of wine, 9pm to 1pm into the next day (sounds a lot but it's not really over that's not even a glass an hour) i'll then sleep that night and go into a crash, during the crash most my symptoms are gone until out of nowhere they spark again, no one can explain this, during the crash I can't get out of bed, it's two extremes. I just looked up Mayo Clinics prices, way way way out of my league, a stay is quoted around 20k, dunno if i was reading the right site and that's without insurance, being in the UK i'd have to pay... Yeah a teaching school would be the one, think they are called META's here, i must mass email some in the next few days. Sent my story tonight to 30 London Neuro's in Autonomic Neuro specialists but you never get them reading it, just an office worker who is like 'do you want an appointment', i've seen that many people I can't afford or waste time with any more people who haven't seen this, last time Neuro cost me £300, the guy basically just felt sorry for me and that was it... felt like saying, am I paying for this? hope this reads half well, it's 6am, another day with no sleep ahead!
  5. 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, hence why the Dublin specialist basically discharged me and told me to go with the NHS. I wish my GP could do send me for these tests but not really the way it works here, nor his area. He did mention a spinal tap one day, might sign myself up to that, sorry thinking out loud
  6. 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..
  7. 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 NHS Neurologist is over 2 year wait in Northern Ireland (No government, NHS at a standstill, an ENT appointment was 2.5 years when I rang to make an appointment recently!) I don't even think after seeing two different Neurologists, one who is an expert in her field where to start, my case seems so complicated and extreme. I am constantly stimulated, even with loads of Xanax, without I end up in hospital from days not sleeping, my eyes are so big i'd frighten you and the stimulation and sweating hardly ever goes away. (little bit of the story, but main post is above) Main issue going for 3 years straight: Not sleeping daily (not even rest), went 9 days CONFIRMED in hospital. Feeling stimulated / “wired” (constant) Easily over-stimulated (can go from fatigue to stimulation in seconds) Dilated pupils (got pictures) Adrenaline rushes (constant pumping in my veins) Tremors hands and legs (weak and shaky on my feet Excessive sweating & random fevers Fatigue/Exercise intolerance Bladder shrinkage (directly linked to how stimulated I feel) Weight Gain – (Extreme 7+ stone in two years) Memory Loss Depression/Anhedonia (That I can remember) Medications tried since 2016: No change: Lithium (Highest dose), Melatonin, Depakote, Quetiapine (50 to 800mg,), Lamotrigine (couldn’t tolerate), Olanzapine 20mg, Buspirone /Promethazine/Buspirone/ Diphenhydramine (makes my heart jump) Mirtazapine. Zopliclones (15mg), Zoloft. More Wired/Stimulated: Elvanse, Backlofen, Phuesdephridrine (Sodafed), Guanfacine. Help and sometimes bring normality for a few hours: Xanax, Clonzepam Doctors seen: London 2016: GP’s trips x 15+ Physiatrists x 6 different people (Not mental health) A&E x 5 Harley Street Northern Ireland: GP trips x 15 Physiatrist x 4 A&E x 4 Endocrinology (thyroid etc - all normal) Catacholmine CT Scan MRI Scan x1 EEG Private Northern Ireland: Physiatrist (many) MRI Scan x 1 Tilt Test Cardiologist x1 Neurologist x1 Dublin Nervous System Specialist Catecholamines: Urine Noradrenaline 240 nmol/24hr < 573 Urine Adrenaline 102 nmol/24hr < 147 Urine Dopamine 1590 nmol/24hr < 3270
  8. 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.
  9. CK1

    Info for boss/coworkers

    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
  10. 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 relate to my story, personally all I know is when my nervous system symptoms go down with Xanax (tremors etc) sleep is possible. Quietapine makes some people very sleep, have you tried it? (didn't make me)
  11. 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
  12. 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.
  13. CK1

    TTT negative, what next?

    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
  14. CK1

    RAPID weight gain

    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 Hyperadrenergic Pots? (or any type of POTS)
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