Conectado/Cansado - Sin dormir durante días

Cerebro y nervios
1

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

 

 

2

Wow sorry to hear but that’s a lot to deal with how old are you ? Sad thing is can’t imagine all of that I’ve had my share but think till they find out issues hard to even say . Tell check into few diseases related to these issue could be all anxiety depression . Sorry for you I have issues sleeping not sleeping but due to gbs I had . God bless keep going to doctors.

3

Wow!! I can't believe you are able to function at all. Have you been checked for Lyme disease or some kind of deficiency? There had GOT TO be something that us causing all this..it's got to be all connected...sure hope you find some answers..bless you..

4

Thanks for both your replies  Caroline and Terrie. I just don't know how no one takes this seriously or which doctor to go to next, my neurologist who was £220 for 20 minutes was not overly interested, my GP is totally lost and he has been trying but it's so unheard of. I just want this cycle to end...

5

I am so sorry for all you are going thru. In you list you said you are craving salt. Is your thyroid off? There is a great herb called bladderwrack that I take for thyroid and it works. the dr. wouldn't give me anything because I wasn't in the "bad area" when they tested me. Look up the symptoms for low and high thyroid.

Look up the syptoms list for no or not enough magnesium. Anxiety is on there. I take 500 mg along with calcium for the effect it has on my muscles and for anxiety. I have noticied a difference. Just be sure you take the mag. that is required for the symptoms you have.

I would suggest you go to a naturalpath and see what they say. I'm like you, I have been to so many drs and pts and had tests and MRI etc. I have learned that sometimes I just have to investigate and they turn to herbs and essential oils if the dr can't help me.

give all of this a try. We aren't getting the minerals from our food that we used to years ago so we have to supplement. I know this all works for me. I've had that"electoral" feeling and pounding heart and anxious feeling as well. the magnesium has cleared it up. I also take Drenamin from Standard Process. It is made from foods and is not a drug. I take 1 or 2 or ever more if needed when I feel that wierd sensation.

There are so many side effects to drugs. check out what you are taking. I'm not a dr but I can tell you that you need to be careful because some of the side effects aren't listed and some require more meds to handle the side effects. I took a med to lower my cholestral . and it effected my muscles and I quit taking it and use Lemongrass and it works without side effects.

Hope some of this helps you.

6

You know the ent I go to specializes in sleep apnea. I just wonder if uou found one that specializes in sleep disorders if they could help you..there has got to be someone out there that can help you..so sorry you are going thru all this..

7

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??

8

Wow Carol, I am a true believer of all natural myself. I do the oils..love thm.....so what is the Drenamin? Iv never hrd of tht. I am Goin to order some of the magnesium flakes and make a spray..didn't realize there were different types of magnesium. Interesting! I am interested in the drenamin for weird feelings. I feel weird often. I get dizzy, my head buzzes, it even feels like it's buzzing as well, I have tinnitis, I get the weak shakes, just feel at times like I just got over the flu. Sometimes I awake with shakes from pure stress..I have slacked off of my oils, but intend to go back full force..I use often lavender for sleep..lemon balm for aches..love learning about all the natural healings..

9

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.

10

Thanks Terrie, 

See it's really not just a sleep thing, it's a constant 1,000 cups of coffee + feeling, really stimulated and out of it, sleep is just the really extreme consequence. I actually rang a couple of sleep specialists and they said because I don't need sleep for days it's not sleep apnea. Kept a sleep diary lately, but it's the stimulated, shaking etc.. that really shows something is going on

Thursday 18th – Wired – 0 hours sleep

Friday 19th – Wired – 0 hours sleep

Saturday - Crash - sleep from 11pm – 1am Monday – 26 hours Sleep

Sunday – Wired – 0 hours sleep

Monday 22nd  – Wired feel out of it. Crash– 2pm – 11pm – 9 hours sleep (heavy fatigue,     shaking, headache) – Slept again 11pm-5am – 9+6 = 15 hours

11

See thyroid was what I thought and my doctor, because 'Wired and Tired' can be a sign of Adrenaline Fatigue, but i've been to two different Endocrinologist and still seeing one, got tested 4 times now for thyroid and it's been ruled out, although I have read that you can have normal readings in 'stage four adrenaline fatigue' if you believe in that, my GP actually does, my Endo doesn't... but i can't even find a specialist here in Northern Ireland who goes of symptoms for Adrenaline Fatigue. 

Unfortunately my symptoms would be both but saying as 'Wired' is Hyperthyroid i'd lean towards it, but then i've huge weight gain (4 odd stone in a year) and fevers, which is hypo.. so I really don't know. My T3,T4 and all that come in really good, which is so frustrating. 

Magnesium I actually take daily. I have always been sceptical of a neuropath, not because I don't believe in supplements, tried LOADS during 3 years, it's more because it's so extreme. 

I will defiantly check out Drenamin now. I just need this madness to end. 3 years and it's getting really extreme, so shocked that doctors (apart from my GP who finally gets this is really bad) are just like, 'meh, can't find any reason for you having these symptoms.." just need an answer 

12

I will get my Endo to test for it next month, thanks

13

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.. 

14

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

15

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🤗😊

16

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

17

Good idea hun

18

I’m also buying Lavener pillows you can get them . Good idea listen maybe also change on maybe diet look on your food when buying also there’s so much crap in foods . Did u get allergy tested cause could be some thing to look into if your allergic to some thing ur eating or allergic to give that thought hun

19

Life can be stressful look they couldn’t find any thing wrong with me till they admitted me no choices then the did spinal tap wow there u go they found what was wrong after basically the longer they waited I was paralyzed stupid doctors think Most need more education 

20

That could be another good idea Carol