Wired/Tired - Not sleeping for days

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Can anyone help me? I don't know where to turn, been to every doctor it seems, no one seems to have any idea... 

Key parts:

WIRED (I feel heavily stimulated), Going days without sleep or need for it, most was 10 days is confirmed at Northwick Park Hospital. When I do sleep during this phase, it is usually just a couple of hours. Even with medications or drinking, i do not get tired. (as you will see below)

 

Recently this comes with a crash, where I finally get sleep, typically 24 - 30 hours. I wake up shattered, sometimes shaking, with huge anxiety running in my veins, then without warning flips back to a wired stage. I never wake up feeling normal, the stimulation is always running.

 

When really Wired/Stimulated my speech races, can’t settle, I feel out of it, warm, headache, eyes feel heavy, pupils dilated (without mood changes, constantly depressed), can’t eat with the feeling in my stomach. I’ve physical symptoms when wired, such as my downstairs shrinking during ‘wired’ phase.

 

I am lately having a lot of fevers, sweating a lot but with low temperatures, dizziness and other symptoms coming into play, which I have a feeling is a consequence of 3 years living like this). 

 

Doctors: 

3 years i've had 60 GP appointments, 4 endocrinologists, cardiologist, MRI, CT, EEG, Psychiatrist for a year, and seen a Neurologist.

 

Medications tried: 

 

Melatonin – No difference to sleep

Supplements – HTP5 etc for sleep – No difference

Zoloft – Added to WIRED effect (came off it within 2 weeks)

Mirtazapine – No change to Wired, happiest I’ve been in years, helped my depersonization, depression, anhedonia / emotions, only stopped it because I wanted to tackle this first, this is a medication I feel I need in the future.

Olanzapine – No difference but helped anxiety but not as much as I’d like, still would want to be on this in the future  

Zopiclones – No difference and can’t make me sleep

 

Last year:

Lithium – No difference at 0.9 for months

Depokte – No difference at all for anything

Quietapine – Could make me sleep but not nightly, no change to Wired

Beta Blockers – Helps shakes (still on them)

Lamotrigine - (couldn’t tolerate)

Xanax & Clonazepam - Both can bring down the feeling a bit, even sometimes get me sleeping, but the sleep only lasts a few hours and other symptoms are still apparent, including the wired just to a less degree, don’t get me relaxed

 

 

 

Symptoms in order they came in (all are still on going and worse):

 

Year before this wired feeling:

High Stress – Break Up – ‘Nervous breakdown’

Depersonization/Anxiety/Derealisation/Depression/NO THOUGHTS/ BLANK MIND/No inner monologue/ Anhedonia – This is my biggest priority after this wired thing. Gets SOME better on Mirtazapine

Fatigue

Bladder dysfunction – Physical shrinkage depending on how ‘wired’ I feel’

Dilated pupils – Eyes dilated very large, everyone points it out and feel heavy

 

Last two years:

Start of this “wired”, unable to get any sleep or switch of even though I am shattered – Feel stimulated 24/7

Excessive sweating

Physical Anxiety – Bad, especially with the shakes or when I go wired

Bad memory

 

Last year:

Crash – After days I crash, where I sleep for over 24 hours

Easily over-stimulated – Now can instantly go into ‘wired mode’ from a simple conversation and pupils will dilate and that can then stick for days

Tremors - I shake badly without beta-blockers and sometimes with (80mg)

Shortness of breath (don’t breath automatically anymore)

Exercise intolerance – Can’t walk a mile, when I was relatively fit before

Fevers - Every few weeks I’ll have a bad fever (but low temperature 33/34)

Intolerance to heat

Cognitive impairment

Craving SALT

Aching neck

Muscle aches expect when really wired

Excessive thirst - Drink 4 litters of water a day

Weight gain from 12 stone to 16.5 in one year

Restless leg syndrome

Headache/migraine - ALL DAY EVERY DAY

Glazed eyes when wired, family notice it and can tell straight away

 

Last 6 months

More wired than a year ago / Happens a lot faster

Legs feel weak and shaky

A lot more fevers

Dizziness – Pretty constant

Personality changes, more aggressive, agitated

Generally feel weak

 

 

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  • Posted

    Have you showed yr neurologist a written list of all you are going thru lie the one you wrote on here?? How could he not see something is wrong??
    • Posted

      Yep, literally gave him that list and he read it and said after reading it 'if it was a neurological disorder you'd be dead by now' so i don't believe it's that.. 'i was like what about a nervous system one' he just kinda shrugged it off and said he didn't think so and like the rest, it was clear he had never heard of anything like this.. but yeah shocked myself, i say shocked, i go to doctors every month, between GP and specialists for 3 years, still yet to find the answer, spent 2.5k last year.. 

    • Posted

      Omg you need to say this why would I spend all my hard money to give to u guys when ur richer then me to find out that I just want to give my money away . Wonder maybe could be your nervious system having axiety I shake here there because gbs . Some thing has to happen before it gets worse . Let me no if you go in
    • Posted

      Oh wow..that's awful..just terrible..I think it's time for a homeopathic..I'd be finished with the others..that is just horrible. So sorry..I can't even imagine. I know my head buzzing, and like waves going off in my head, and sometimes I awake to almost convulsing in my limbs, and to me it's almost unbearable, but you..omg..I so feel for you..

    • Posted

      Awh that doesn't sound nice either. Nothing like feeling healthy, not that i can remember that feeling. Never took 'your health is your wealth'.. turns out to be true. 

      I've just emailed a homeopathic doctor, it's worth a shot you know, thanks, i'll keep you updated! think they will get back to me today. 

    • Posted

      Yes please let me know what they say. I truly believe they can maybe help..that will be my next step as well if tests dnt show something to help me out..take care
  • Posted

    I had gbs Gillian Barrie syndrome picky feeling numbness barley could walk got so sick bad 10 days shot out the hospital till last 10 day 6 ambulances later feel in his face paralyzed next u no on life support so keep Going demand these dr gone crazy sad to say basically shot me out saying I’m nuts till last 10 day from apologizing head chef staff doctors.
    • Posted

      I'm so sorry to hear that. I am going to my doctor monday, he has kinda subtly said about admitting me to hospital, but he said he doesn't know where i'd even go... i think it's time to just find a bed and let them figure that out when i am in there, this can't go on, it's killing my body. 

      Issue is it comes in waves of no sleep, slightly okay, wired, no sleep for days, then the fevers, shakes, so it's like if they give me 2/3 days they will see it, if they give me one night, they might just think there is nothing wrong. I know at least my doctor would write a good case i guess

    • Posted

      You know hun if that’s the case but do they have any idea I’ve had sleep test I’m like u in sleeping department I sleep 2/3 hr wake up then can sleep then up all hr finally get to sleep sleep only one hr that’s not normal they say I don’t have sleep apnea thrn I said the it’s sleep somnia I swear these dr are so ffff bad word but hey you get discourage . I was in hospital 5 months civic 6 months rehab still half paralyzed when I told my dr there’s some thing wrong same dr 10 days in emerge I New from active to being that sick if they would of got it on time I would of not been as bad as I was on life support . So I’m walking u dam right I’m still pushing but taking one day at a time going gym just can’t walk fast long long distance use wheel chair only when I go shopping or things take long time so I don’t fall stuff maybe this summer I’ll do better for another gym pass so bring it on lord lol . Listen if they want u to go in the hospital even week better then them just not doing any thing right Hun. Keep me posted free internet lol . Good luck let us know plz🤗😊

    • Posted

      Another thing to the doctors have to have a reason to admit you Hun other wise they won’t . 
    • Posted

      my doctor actually suggested it saying he is on the fence, but considering it.. so we will find out Monday, i'll try reply to the other messages tomorrow 

    • Posted

      That’s really sad because I wake up constantly also not great feeling when I do sleep makes me angry I feel I’m losing my day.let us know how ur doing
    • Posted

      Since been to my GP, was up all sunday, all monday, slept tuesday and all of wednesday, two days in bed, two days awake, this cycle makes no sense. 

      I have been up now since 5am, about an hour after I got up this 'wired' has just kicked in, feel out of it now. My GP and me had a big conversation and read the notes of the Neurologist, he thinks it's 'hyper stimulation', where adrenaline etc kicks in and keeps me up, which makes a lot of sense, just my Physiatrist doesn't take anxiety seriously and thinks it's all to do with therapy, when i've a blank mind and nothing i need to talk about, no social anxiety what so ever... even my GP agreed that anxiety such as this is more chemical... 5 weeks time I see my physiatrist, hopefully he will listen to the Neurologist recommendations... who knows. 

      How are you Caroline?  

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