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(Please) WIRED 10 days no sleep. YEP, I really need some advice... 1.8 yrs searching

bipolar? nervous system? anything?

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#1 MARm

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Posted 12 July 2017 - 10:11 PM


First, thanks for reading, this story is messed up and unfortunately my life. I have seen 50 doctors, paid Harley Street, seen 10 Psychologists, an Endocrinologist with 1 x 2 A4 pages of bloods three months apart. MRI. CT scan. Tried Olanzapine 20/30mg over 8 months, Quetiapine (hate that drug) 2 months at 800mg, Benzo's at 30mg, Clonazepam 5mg, Zopiclones 3 x 7.5 + more I am sure. Currently just on Lithium for 3 months at 0.9. 

 

Story: I'll keep this as brief as I can but details will be provided if asked, just don't want to bore. (i'll mention important dates) 

 

Previous - Depression - This goes from 4/10 to now 10/10, don't even have thoughts, blank. emotionless. (By August 5/10 so not terrible) 

 

Febuary 2016: Starts with chest hair falling out, shrinkage of my male parts (both). Before this I noticed my eyes at night are scary big. 

Week later: Can't sleep so spend 24 hours without sleep, continue next day as normal, but do find it weird as I am not tired. 

 

March: Get Olanzapine 20mg as I say to my doctor am I bipolar? this med I took and went to 30mg somewhere along the line till near Christmas.

He also arranges a Psychologist meeting (i'll no mention every one) anyway it comes back with them saying I don't have bipolar, (there were 2 as they called me back for a 2.5 hour meeting with two people) 

 

April: Been to doctors 3 times, sleep getting worse, no anxiety towards it, it's just not happening, try Melatonin. Also every night I don't sleep I go to the gym once it hits 2am. Still don't get tired with a day sleep missed 

 

June: Unable to drive, not getting enough sleep, although I am not tired my reactions aren't great, life by now is impossible.t Confused and looking everywhere for what this might be.   

 

August: WIRED MODE STARTS - this wired mode comes out.. my eyes are nearly always big (get asked what drugs I am on out with my mates a lot. Feel like I am on speed x100. This is still till here till this day but 10x worse. The more wired I am the more my downstairs shrinks to the point if I am way high it hurts...

My mood while wired which is constantly just sometimes a 5/100 sometimes a 120/100 but I have low mood, doesn't make me feel good. 

 

October: Fatigue starting after being wired so long, sleeping 1 days a week. Start getting shakes

 

November: OVERDOSE. Went 4 times to A&E after getting banned from sleeping tablets and benzo's with my doctor surgery in London thinking I was just abusing drugs as by that time I was there every week begging. A&E refuse and my doctors, so i keep going to A&E to show them how bad it is as no one is listening and been to Harley Street and god knows what by then. by day 9 I tried to drown myself in tablets. Day 9 was just unbearable, if it happened again, I'd try a different way, but i am sure i'd try something, you have no idea how extreme it is. Oh and didn't sleep that night in A&E = DAY 10. Where did I go wrong? 

 

December to July: These months have flown by, not sleeping so much and so elevated days are hard to remember. I still am coherent and everything, just like as i said on SPEED ALL THE TIME (i'm not on any illegal drugs AT ALL). Apart from December being in bed sick for 4 weeks unable to move as the OD had been so bad on my insides, the wired soon picked up, I moved back to my mothers, she did the whole sleep routine thing, so I just stayed in the kitchen at night, was averaging 4 days without feeling tired, this contained on Quietapine apart from a brief week or two. The wired was always coming through but I got to sleep most nights or every other which for me is a god send but as i said the state of WIRED stayed. I hated that drug so after 2 months many increases I was glad we put it to bed. Then I have been on Lithium 3 months at 0.9 higher than my doctor usually goes. FELT NOTHING. Memory is now gone on vacation, not sure i'll see that again, new symptoms all the time, fatigue, disorientated, but mainly wired like I am on E's and dropped 30 and my head is about to explode but instead of a high just imagine rolling over broken glass. One weird thing, Sudafed for Sinusitis got me so high and I could feel that high that I hallucinated, this is interesting because before this 'thing' I use to take Pseudoephedrine (Sudafed) just fine. 

 

So yeah. I have banged every door, my Psychologist says he can see some hypo mania but says the WIRED, Shrinkage, Pupils and 'coming up' feeling are not right. The thing is, it's either ALL one thing or it's not.

 

Also no bi polar medication is touching this like not even a little, I am very aware of anxiety, this would be like 50 peoples anxieties if you want to blame that, it's so hard to sedate me. Ketamine anyone? I kid, if my vision gets any worse... well. Lithium may as well be sugar and so is everything. I did not go to bed last night, won't tonight and have to hope my body crashes soon, 2 sometimes 3 times a month for 1 day and then it's back to being ELEVATED and my pupils are crazy.

 

Btw I know this sounds made up, ring Northwick Park Hospital and they will confirm it, I know my doctor did. I am honestly loosing the will, it's not the depression, it's the fact things get worse daily, for instance now I have ghosting when I walk past my door (the light around the door frame), probably because my eyes are bigger than an OWL. It's been 1.8 years there is only so much a man can take. 

 

I really just want to know what should I do?

 

My ideas:  Nervous system - see a Neurologist? - Currently seeing an Endocrinologist still, least he is honest and says he doesn't know. 

 

Ps I wrote this on one day no sleep and wired off my tree... i'll come back and fix bits up after a break

 


Edited by CK1, 12 July 2017 - 10:55 PM.


#2 tunt01

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Posted 12 July 2017 - 10:19 PM

  • Get off all benzos.  There are threads on this class of drug, using bacopa, magnesium malate/glycinate to restore GABA function.  You may have to slowly taper off these drugs overtime.  Do this under medical supervision, because if you stop instantly you can have a seizure and kill yourself from the excitotoxic effects.
  • Maybe take Relora (natural benzo) as a replacement before bedtime.
  • Take 5gs of glycine 1 hr before bedtime.
  • Only eat and exercise during the day.  You don't exercise at 2 AM.  It throws your body completely off.  Don't eat 4 hrs or less before bedtime.
  • Read Cognitive Behavior Therapy for sleep disorder (sleep maintenance insomnia).  If you are up at night, do some quiet reading, prayer, meditation.  Do not go run and lift weights.  Do not eat food.

Edited by prophets, 12 July 2017 - 10:20 PM.

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#3 Mind_Paralysis

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Posted 12 July 2017 - 11:19 PM

Hmm... This sounds extremely serious. Why won't they commit you? You've obviously got terrible issues - surely they should put you in either the regular, or psychiatric hospital, to really go over your issues?

 

Anyways - the symptoms you mention definitively sound more like something physically, rather than neurologically wrong - it actually... well, I don't want to scare you - but it almost sounds as if you've got some kind of malfunction in your hormonal systems - like something has PHYSICALLY changed in one of your key organs.

 

Like, it sounds a bit like HYPERthyroidism - which is when your thyroid gland produces too much thyroid hormone - this then increases production of catecholamines - neurotransmitters such as Dopamine and Norepinephrine - this then causes symptoms VERY similar to someone taking "speed" drugs such as ephedrine or methamphetamine.

 

But surely, this has been checked? By your endocrinologist, yes? This is a fairly simple blood-test, to confirm.

 

If you check the symptoms here, you can note that there are quite a few similarities:

 

https://en.wikipedia...ns_and_symptoms

 

Hmm... it even mentions FEMINISATION! Seems like a rarer symptom, but it's there all right...

 

 

Dude - call your Dr. tomorrow and ask him if you could have Hyperthyroidism!

 

 

Meanwhile, if it takes time for them to act, you can ask to get drugs called BETAblockers - these are medications which stop heartbeat, which impair the effects of catecholamines on your body - they are used when treating stuff such as problems with your heart, or stage-fright - stuff when your body is overly stimulated.

 

There are also MULTIPLE other medications which will block the effects of thyroid hormones directly at the source - so, if it turns out that you have Hyperthyroidism, then relief could be soon!

 

 

It's also possible that your hyperthyroidism is caused by a... by a tumour. Or, it's not hyperthyroidism, but you have a tumour on your adrenal glands, which also causes abnormally high production of catecholamines - just more directly than from hyperthyroidism.

 

If it's a tumour in your adrenals, then it sounds mostly like a Pheochromocytoma - this tumour causes super-production of epinephrine - like being on a really high dose of Sudafed, 24/7.

https://en.wikipedia...heochromocytoma

 

However... that usually doesn't cause feminisation, rather, feminisation is usually caused by another tumour, called Adrenocortical Adenoma - these can be both harmless (well... they're not cancer) or malignant - cancerous.

 

https://en.wikipedia...ortical_adenoma

 

 

I realize these are not nice things to hear, but they are what I got to thinking about when you describe your symptoms... My money is on Hyperthyroidism though - it fits most of your symptoms in one single diagnosis. Hyperthyroidism can be very well treated, and Pheochromocytoma as well - with surgery, Pheo can often be completely removed with no issues and DIRECT curing of the problems! = )

 

 

Have a look at the links and see what you think - and then talk to your Dr's about these.



#4 Puppalupacus

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Posted 13 July 2017 - 12:56 AM

I've run into this kind of willful ignorance and apathy over and over and over with physicians.  On one hand, they absolutely do not like informed patients, but if you don't speak up, you're going to get run-of-the-mill "my protocol works on all of my patients" attitude... and subsequent lack of results.  If you do speak up, they just write you off and move down the assembly line.  This just plain sucks, and I can't offer anything other than the pupil effects definitely sound related to adrenals/cortisol which have already been mentioned.


Edited by Puppalupacus, 13 July 2017 - 12:56 AM.


#5 MARm

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Posted 14 July 2017 - 10:05 PM

Thanks all three for your replies. 

 

I get the first response I do. This is more like being on speed and 'up' than can't sleep. 

 

Stinkorninjor - your reply really interests me, Adrenal glands was something I thought for ages. I will be sure in the next few days to check them all out. I don't get how all my bloods are normal. My GP thought it was gonna show up Adrenaline Fatigue. Is there a way that something physical could be wrong and not in my bloods? 

 

Puppalupacus - Yeah Adrenals or Cortisol was my bet, yet the bloods 3 times didn't match, the symptoms do... even my GP was betting on these. 

 

OH and i will fix the story when i get sleep, haven't slept since Monday, in no frame of mind to do it. Monday another doctors appointment, fun never ends. 



#6 MARm

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Posted 16 November 2017 - 10:28 PM

Updates: 

 

 

Been to 4 Endo's since, more tests, with nothing. 

EEG, MRI all been done, 3 more mode stabilisers tried and not working. On Beta Blockers, have a lot more I could add to this story, but WIRED and Tired is it, i can't believe it's not adrenaline fatigue, but i've got so many bloods, cortisol tests, the whole 9 years and paid private to another Endo to double check, so i've got to let that one go, Cushing's seemed to match a LITTLE but i've been ruled out. Bipolar now even my P doc is back tracking, it's been 9 months with him, nothing he gives me I even notice unless it's a side effect.

 

Is there a super doctor? I'd pay good money for someone who knew what this was, no where I read mentions this and everyone I meet is totally LOST. I dunno how much more of this hell i can take 



#7 mike535

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Posted 17 November 2017 - 01:00 AM

try alternative


Edited by mike535, 17 November 2017 - 01:01 AM.

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#8 nickthird

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Posted 17 November 2017 - 06:03 AM

What you are describing sounds more like you have a feeling of dread that something bad is going to happen, and you seem to become very negative about yourself and look for things in you that are getting progressively worse obsessively.

 

This could be anxiety due to OCD, but it sounds more like psychosis.

 

You should see a psychiatrist or commit yourself to a psychiatric hospital, I know the stigma is bad but they would be able to adjust your meds much faster.



#9 MARm

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Posted 17 November 2017 - 10:34 AM

No, totally not anxiety or a feeling, it's physical. My doctors have all seen it, no OCD or psychosis, ruled out by 3 different P docs and i have meet with one for twice a week for 4 months and then once a month for the remaining 6 months and he has ruled that it's not mental health issue.... as he can see things that simply cannot be caused by thoughts, for instance, my penis shrinkage the second this adrenaline feeling flips. He also agrees that being not tired for days continually is not fitting bipolar as i would be in a 2.5 year episode which he said is just unheard of. 

 

I am on NO meds currently apart from beta blockers as the doctors want to know what to treat before trying any more of 9 drugs tried... i asked to go to hospital told time and time again, they don't know what department i could go to, psychiatric hospital even my GP said is not where i belong, i am fully aware and not psychotic, hence why drugs such as Olanzapine / Quietapine up to 800mg do not change anything... thanks for the suggestion, i know how this may read


When I am wired, I do not feel happy/sad change, when I crash and sleep I am so tired I have no energy to make dinner, it’s so dramatic. Feel it behind my eyes, feels like 1,000 cans of red bull.

 

Fatigue  - Walking just 1 mile feels like I am going to drop dead

Penis and Testicles shrinkage   + ED                                               (dramatic when wired, I have pictures to show the difference!)

Dilated pupils when wired otherwise very glazed

Feel out of it when in-between wired and tired

No concentration

Impaired memory (Forget everything, the date & names are impossible)

Intensified stress reaction/Sensory overload! (get in a daze)

Dizziness               (Vertigo/Shaky Vision)

Fever – 33.3c – Deep flu feeling at least twice a month for a few days

Shaking or trembling  (NEVER EVER had shakes, now I have a tremor epically after crashing and getting sleep, have to take beta blockers)

Weight gain                              (3 shirt sizes in 6 months)

Headaches          (A few episodes of Alice In Wonderland)

Craving salt           (Started craving food such as ready salted crisps)

Can’t stand heat              

Low blood sugar   (A&E confirmed, wake up in the night needing sugar)

Hair – Falls out in chunks on chest from time to time and some hair loss

Wake up not feeling tired unless I’ve crashed

If I go out drinking no matter how much I drink I won’t get sleepy, infact I’ve been on two HEAAAVVVYY all day for two days in a row with not even a feeling of tiredness, NEVER felt this stimulated. 


Edited by CK1, 17 November 2017 - 10:38 AM.


#10 Mind_Paralysis

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Posted 17 November 2017 - 11:24 AM

So, they have tested your T3 and T4, and found that your T3 levels are not dramatically up?

 

Have they truly concluded that it's not one of these:

 

 

Hyperthyroidism

Pheocromocytoma

Adrenocortical Adenoma

 

 

Have they checked for metabolites for dopamine, norepinephrine and epinephrine in your blood? If you're this wired, then theoretically, these should be sky-high.

 

 

What 9 drugs have they tried on you, btw? List them all, and possibly your response, if you can recall them. It could give us a clue as to what's going on.

 

I recommend requesting something called CLONIDINE as well - it's a drug used for the treatment of high blood pressure, but also of ADHD. It has effects that are on the surface similar to beta-blockers, but it achieves it through a back-door sort of way - by increasing the activity of the Alpha-2 adrenergic auto-receptors (when these are activated, they LOWER the signalling at other, similar receptors), it lowers the effects of norepinephrine in the peripheral nervous system. Many find it rather sedating because of this, which would of course be good, for someone like you.

 

A combination of Clonidine and Beta-blockers are often used when someone is stricken by something called "Adrenergic Storm" - which is a condition equivalent to Serotonin Syndrome but for Norepinephrine instead (for instance, if you combine Reboxetine with an MAOI, you're going to get this). Some of the symptoms of Adrenergic Storm is similar to what you're going through - it might be able to help...


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#11 MARm

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Posted 17 November 2017 - 12:37 PM

Thanks so much for this reply, this all sounds the closest by FAR to anything any doctor has talked about in years,

 

 T3 and T4 are perfect, done 4 times as this is the area all doctors keep thinking about and lost at when it came back so healthy. 

 

 

 

Hyperthyroidism - Matches somewhat, but ruled out too many times

Pheocromocytoma - Matches too, you are very knowledgeable indeed, in fact it matches so well, i am gonna make sure and enquire about this, i've had 4 endo's, i'll do some research, but i thought with all my bloods they would have found this? 

Adrenocortical Adenoma - Interesting, would a CT + MRI not show this tumour? 

 

 

APPARENTLY.. in the UK we don't check  metabolites for dopamine, norepinephrine and epinephrine in your blood... i dunno if that's bull or not? i have looked into private tests, maybe i should jump on that. 

 

 

Okay 9 drugs here goes: 

 

Olanzapine - Lowered anxiety, gained more weight, liked it but never did anything for this (best drug yet though or up there) 

 

Mirtazapine - 3 months in killed the depression a lot, got my blank mind to start thinking, got joy etc for once, but no change in the wired tired stuff and did not make me sleepy, in fact as much as i loved it, as i had joy, it was adding to the elevation, quit after 3 months just as the joy was back.. sucks. 

 

Quietapine from 50mg to 800mg over a few months - Did nothing, helped depression 5% nothing like mirtazapine, this kept the wired and tired state going but however when it did finally work i'd be in bed for over a day and then it would start again, even though i was taking it every day. Also didn't make me drowsy, to the surprise of my P doc. 

 

Lithium - 4 months on, 0.9 in levels (until i went to toxic and the roof was green and i couldn't even walk for a day, labs were like 1.5 or something stupid) p doc agreed that by 4 months i should notice it, when i came off it after going toxic i did not notice nor my mum even one change from before to after. 

 

Beta Blockers - don't make me feel relaxed, but stop the shakes when they are bad, other than that, mid help, 5%

 

Lamotrigine - could not tolerate, had flu symptoms very quickly ended up in bed, went to the GP and he made me get off them, said i have an allergic but common reaction that people get to it

 

Depakote - Like lithium, did not feel a thing, until one day i went too high 1,500mg a day after 2/3 months and i was just like, get me off this. Worst drug i've tried and i thought Lithium was bad

 

Zopiclones - 2 years ago 15mg could buy me some sleep for a day and then wouldn't work until my body was, now even after a 1 year break, i've got 20 here in the house 7.5mg and they don't touch me, or make me drowsy, just sugar. 

 

Clonazepam - Takes about 3mg to bring my wired state down, but can't break the cycle, can get me sleeping more regally but the up and down thing goes on, even if i take it say 3 times a day 1mg, the cycle has it's own ideas regardless, yet i can be at a half wired state and it will be able to over ride it to a degree, can't stop the sweating or dilation or any of that, if it take it every day it becomes pointless

 

Xanax - Very similar to clonazepam really, i actually find it more effective, but even 4mg doesn't make me feel normal or relaxed or anything it would have when i just had some type of anxiety 3 years ago, it doesn't make my head feel any different, stimulation is still there, just slightly less

 

There is 10, probably tried a couple more. 

 

 

CLONIDINE sounds exactly like something i need. I haven't found anything sedating lately, a lot of things point to my nervous system, that's for sure and i think it's no mistake that the only things on my 10 list that work are Benzo's because of the nervous system action IMO. Unfortunately my P doc has a list and that's all i get, he is going down a list of 10, which even he says are less effective for 'bipolar' and can't seem to get off this track, even though he thinks it doesn't add up. This means, my own GP who now thinks I am not Bipolar at all is powerless to prescribe me ANYTHING, minus some antibiotics i got recently. 

 

"Adrenergic Storm" - sounds another one that really hits a chord, as i do study a lot over 3 years and Norepinephrine would be the one thing i'd say seems like it's through the roof, dopamine I doubt as i don't get any pleasure from anything.. oh and i forgot previous to this I had tried Zoloft and it did not bring back happiness it just made me high, yet Mirtazapine did kill the depression and did not instantly get me high, i was able to take Mirtazapine 3 months in this state before I quit to try and figure out this, Zoloft previous before all this, was like 3 days and I was as 'UP' without the physical symptoms i have now... 

 

SO glad of this reply, now I have a list. 

 

Do you think a neurologist is the best guy for the task? as Endo's and P Docs (seen like 6 different ones!!) are not helping AT ALL. GP is great but as he said, he has never seen anything like this and neither had 12 doctors at his surgery as they had a full meeting about me... 

 
thanks again 

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#12 Mind_Paralysis

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Posted 17 November 2017 - 02:52 PM

I'm glad to be of help, and to hear that my words may be helpful. = ) SOMEONE should try to help you! Someone needs to dig deep here.

 

 

Measuring neurotransmitter blood-plasma levels isn't rubbish, not if one is suspecting a tumour which increases production of said transmitters - the difference is SO BIG when someone has something like this, that it will be noticeable if one actually checks plasma levels.

 

 

A neurologist certainly wouldn't hurt, since you've been to various endocrinologists.

 

"Adrenergic Storm" is btw, merely a generic decription of the state one gets into when NE is overloading your nervous system, the source of the storm varies though.

 

https://en.wikipedia...drenergic_storm

 

 

A pheochromocytoma can rarely cause an adrenergic storm as well...

 

Rarely, a pheochromocytoma (tumor of the medullar tissue of the adrenal glands, which are located anterior to the kidney), may result in an adrenergic storm. This type of tumor is not common to begin with, and furthermore, the subtype that can cause massive adrenaline release is rarer still.

 

 

The conditions for the specific tumour are so unusual though, that it wouldn't be odd if the Dr's are unaware of it...

 

But your adrenal glands have been catscanned, had they not? Have they used equipment aimed at your abdomen, around where your kidney is?

Still... it fits quite well...

 

An MRI of your brain may be a good idea, which a neurologist would order, to see if you don't have some kind of abnormalities their as well.


Edited by Stinkorninjor, 17 November 2017 - 02:56 PM.

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#13 MARm

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Posted 17 November 2017 - 03:39 PM

I know it's been 50 doctors, not even joking. Think not seeing a neurologist sooner maybe one of the major issues and a lot of paths tested that were nothing like what i was experiencing. You seem to know more about my issues than anywhere i've been. 

 

"Measuring neurotransmitter blood-plasma levels isn't rubbish" - i will order a private one, it's getting the bloods here in Northern Ireland, a lot in London etc seem to do this privately. I'll keep looking, the urine can be done at home obviously. (least this is what i think i need based on my research today) 

 

Adrenergic Storm does sound somewhat similar but you know what after reading your suggestions I came across Dysauntonmia / ANS and POTS, POTs sounds really really close, especially the test they do, you put me on that tilt test i'd fail it 100% no doubt, i know from just getting up out of bed and pouring into sweat. I haven't figured out if ANS is a general term and POTS a specific condition for it? I've been out all day but this is the area that I am gonna spend today on as on this picture, the right side Sympathicus has most my symptoms and mentions stimulants, the other flip coin is in the symptoms it has chronic fatigue which i also feel terribly, so it's the only thing that explains how i am both WIRED and extremely shattered. 

 

https://en.wikipedia...ous_System.jpg 

 

What do you think? 

 

My adrenal glands have NOT been catscanned, they did not seem the need based on all my levels, even though I pushed for this and Iodine test, neither they were up for... 

 

I had an MRI that i paid for and CT, both look totally normal... which is something.. 

 

Thanks for the PM

 


#14 MARm

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Posted 17 November 2017 - 03:50 PM

Pots symptoms: 

 

 

Lightheadedness - No

Fainting or near fainting - No

Generalized weakness - Yes

Palpitations - No

Tremulousness - Yes bad

Shortness of breath - Yep

Chest discomfort and/or pain - Yep 

Loss of sweating - Yep BAD

Excessive sweating - Yep 

Nausea - Yep

Vomiting - No

Abdominal pain - No

Diarrhea - No

Constipation - No

Bladder dysfunction - Yep

Pupillary dysfunction - BAD YEP

Fatigue - YEP BAD

Sleep disorders - WELL.. YESS

Headache/migraine - ALL DAY EVERY DAY

Dizziness - Constant 

Tachycardia - Depends

Exercise intolerance - Yep, can't walk a mile, when that was a walk in the park

Clamminess - Yep 

Anxiety - Yep 

Flushing - Yep 

Intolerance to heat - Yep

Feeling cold all over - No

Low blood pressure upon standing - YEP

Cognitive impairment - YEEEEP

Narrowing of upright pulse pressure - dunno

Cold hands - No

Hypovolemia - I crave SALT so maybe? 

Chills - No

High blood pressure - Mild i've been told 

Hyperventilation - No

Numbness or tingling sensations - Yep 

Reduced pulse pressure upon standing - Dunno

Low back pain - Meh not worryingly 

Aching neck and shoulders - Yep 

Noise sensitivity - Lightly

Light Sensitivity - HUGE see halos

Disequalibrium - YES

Arrhythmias - Dunno

Chemical sensitivities - YEP sodafed made me hallucinate? 

Easily over-stimulated - YEP INSTANTLY 

Feeling full quickly - Yep eat hardly anything compared to what i use to

Feeling “wired” - THIS IS IT! WIRED

Food allergies/sensitivities - Dunno

Hyperreflexia - Dunno?

Loss of appetite - Yep

Loss of sex drive - YEP i.e. NONE

Muscle aches and/or joint pains - Ouch yes all day

Swollen nodules/lymph nodes - No idea

Polydipsia (excessive thirst) - YES, drink 5 litters of water a day

Weight loss or gain - Massive gain

Feeling detached from surroundings - Yep got depersonization

Restless leg syndrome - Depends, sometimes



#15 Mind_Paralysis

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Posted 17 November 2017 - 04:40 PM

ANS = Autonomous Nervous System.

 

POTS is but one such phenomenon that can be seen when there's some form of Dysautonomia - usually there's a reason for the dysautonomia though... either some kind of secondary immune system error, or some kind of degenerative disease behind it... infections as well.

 

I must admit that POTS is a new thing to me, I don't know much about it - it does seem to me as if it's often a SIGN or RESULT of some other disease though... Increased NE because of hyperthyroidism can cause POTS for instance.

 

 


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#16 MARm

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Posted 17 November 2017 - 06:06 PM

So i think saying as 

Dysautonomia/ANS/POTS all kinda fit, it's a nervous system thing i am looking at? feel like we made a lot of progress today.. so neurologist right? 



#17 Mind_Paralysis

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Posted 17 November 2017 - 07:02 PM

So i think saying as 

Dysautonomia/ANS/POTS all kinda fit, it's a nervous system thing i am looking at? feel like we made a lot of progress today.. so neurologist right? 

 

No... POTS can be caused by degenerative disorders originating from other systems as well. There's a myriad of reasons why it happens.

 

But contacting a neurologist to get a look is still a good thing, since that's an avenue that you haven't explored yet.



#18 Deaden

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Posted 17 November 2017 - 09:45 PM

"Randy Gardner (born 1949) is the holder of the scientifically documented record for the longest a human has intentionally gone without sleep not using stimulants of any kind. In 1964, Gardner, a high school student in San Diego, California, stayed awake for 264.4 hours (11 days 25 minutes)"

You are so close to beating a World Record!!

#19 Deaden

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Posted 17 November 2017 - 09:48 PM

No, but seriously, this sucks I hope you can get relief on your issue in the near future
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#20 MARm

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Posted 19 November 2017 - 06:09 PM

I could do it if I wanted that record, but let myself have that extreme torture again.. 4 days is like the tipping point, where thing start to go down hill and i wasn't tired, i just needed sleep. 

 

Friday I was up till saturday 4pm, finally xanxa and zoplicolines with alcohol all night and i woke up sunday at 2pm, so 22 hours? this thing makes no sense. 

 

Thanks to everyone who has replied, Stinkorninjor especially been legendary. Rang the doctors and got a private referral to arrange, going to wait till after 22nd where I have an EEG coming up, so i can show him everything he needs and i will keep you updated, just in case this ever comes up for anyone else (and praying that I get some headway!) ... what ever this is, it needs more publicity... but it must be rare



#21 Deaden

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Posted 20 November 2017 - 02:11 PM

Yes Stinkorminjor is a great guy. Hmmm but I'm thinking... maybe if you beat the world record and can get it registered somehow you will get more recognition and some good doctors might be interested in helping you. I don't know, just a thought


Yes Stinkorminjor is a great guy. Hmmm but I'm thinking... maybe if you beat the world record and can get it registered somehow you will get more recognition and some good doctors might be interested in helping you. I don't know, just a thought



#22 MARm

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Posted 11 December 2017 - 10:06 PM

I have actually looked into it before and Guinness Book of records won't accept it anymore, but I might set up a time laps camera and do it anyway, might be better to document it. Since this I've been to a Cardiologist and put various things in place, now I kinda have an area (nervous system) that matches:

 

MRI with contrast (my last one didn't, I asked if they thought it was Cushings and they said, it's what they are looking for in that... i've thought it was Cushings in the past, but last MRI was clear, but had no contrast) 

Salt 24 Hour Urine Sample

Tilt Test 

Neurologist

 

So hopefully get closer. What promoted me to come back on here, is I just took 600mg of 5 HTP.. my eyes are instantly dilated and I am rather well.. high and dizzy.. Serotonin is not something my brain is liking at all. Weird as Mirtazapine is fine, but Zoloft does the same thing...



#23 Junk Master

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Posted 13 December 2017 - 07:41 AM

My first thought was Hyperthyroidism...

 

IMO I'm concerned with your lack of sleep in the short term.  Have you tried a short course of zolpidem, or even triazolam just to get a couple consecutive days of sleep?

 

Wish you the best,


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#24 MARm

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Posted 13 December 2017 - 06:00 PM

"My first thought was Hyperthyroidism..." - yeah me too, but all the tests say it's not an Endo's, even the private guy seems to think my throyid is really good.. so just got to believe that, been 4 times. Seems like i got to rule that one out.  

 

Me too especially over Christmas, not good, functioning is pretty impossible. Day 3 today awake, shakes are back. Urgh.

 

Ever time I mention Zolpidem it's met with a stern NO. Yet they gave me Zopiclones, i don't see the big difference in the level of drug.. they Zopiclones don't work even at 15mg so that's pointless, don't even feel them. 

 

Triazolam? No I haven't tried that, but they are very closed minded with any sleep style drugs.

 

I did get Nitrazepam last week for a 10 day course 5mg, ended up taking 10mg, did not do a thing, got two left, may as well be sugar, I use them when I am on a crash after many days awake to buy me a longer sleep, but they don't get me to sleep and been told once it runs out I can't get another course.

 

Thanks for the concern, more than they seem to be, as mentioned i've been to Hospital with no sleep for days, last few times I left with nothing and they had nothing to say, was a waste of 4 hours and they act like it is wasting there time too. 

 

I am have been trying to see what I can get on the net sent over for Christmas period, maybe i'll see if I can source Zolpidem, all the online sites are crazy expensive and i am not glued up on the whole dark web thing, sounds like a good call. For a while my friend was getting me Xanax bar's, was finding i had to take around 3mg to get some effectiveness, which I know is a medium amount, even them I didn't want the benzo addiction so tried to space out and go weeks between a cycle, which Bezo's wasn't the answer, but for the short term, better than this hell.. 

 

 



#25 Mind_Paralysis

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Posted 13 December 2017 - 07:12 PM

Have you talked to your GP about Clonidine, Guanfacine, and the combination with Beta blockers? There's another fellow with hyper-stimulated state on this forum, and for him, beta-blockers don't work either, and Clonidine causes an abnormal reaction where it instead STIMULATES even further -however, when in a state of Adrenergic Storm, the COMBINATION of these two are used, and this is usually what takes down the state, as there's a rather big cascade of two different mechanisms inhibiting stimulation in the nervous system.

 

Talk to your GP about combining Clonidine and Propranolol - that's something you haven't tried yet, and it's bound to be at least somewhat sedating, when combined.


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#26 MARm

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Posted 13 December 2017 - 07:54 PM

Sorry I never took Clonidine in properly when you messaged last time, lack of sleep. 

 

Thanks for replying again, you know I read more into Adrenergic Storm and that's the feeling alright, even if it isn't the thing causing the symptoms or if them symptoms are there simply because I haven't slept much in two years..but it fits the state I am constantly in.

 

I am gonna go to my GP next week for sure, I will let you know how I get on, another wise I will take your other advice on PM. 

 

Clonidine works for 3 things I have, ADHD, Anxiety and Sleep!






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