Having extreme symptoms, 3 years of searching

[WreckingHotelRooms]

For over 3 years now and getting worse, I have been living constantly feeling stimulated. It's like 1,000 cups of coffee. (it's a lot more extreme).

I've spent thousands in the UK trying to figure this out, MRI, CT scans, GPs. The doctors were quick to blame mental health which I guess has probably happened some of you, they have tried 15 medications, everything from Depakote, to 800mg Quietapine to Lithium all with no effect what so ever. 

None of these could stop this 'wired and tired' pendulum I am on. Beta blockers can help the shakes but nothing helps my symptoms more than 1.5mg Clonazepam, which I was given after 4 days no sleep, as Zopiclones doesn't make me sleep either. This is the first time in 3 years we have something that helps. So now I am working backwards trying to figure out why, for a while I have been look at nervous system because of my symptoms and I guess if it's POTs/Dysautonomia it kinda is (from what little I know, my GP doesn't know much about POTS). 

My question is, can POTS be this/does this sound familiar?  Main symptoms (got 20 other ones); 

Feeling stimulated (constant, sometimes extreme)

Dilated pupils (rarely when I crash these go back to normal)

Not sleeping for days (up to 10 days in a row confirmed in A&E in London)

Tremors hands and legs (weak and shaky on my feet)*

Excessive sweating & fevers (when it's really kicked in)

Adrenaline rushes, followed by anxiety (depression too) 

Easily over-stimulated – Just doing simple tasks can send adrenaline and make me feel out of it

Bladder shrinkage (when stimulated) 

Weight Gain

Fatigue  

 

Side note:

I got a catecholamines test, my results were

Noradrenaline 240nmol (range was below 573)

Dopamine 1590nmol (range was below 3270) 

Adrenaline 102nmol (range was below 147)

Also anyone had a Urine Adrenaline, if so what was yours? (i has expecting mine to be through the roof as that's what it feels like)

 

Many thanks, this has ripped my life upside down.  Ps, I do have a private Tilt test coming up but it's months away, so far away I don't even have a letter yet. 

[m@t]

Have you done a poor mans tilt table test to see what happens to your heart rate when you change position from laying or sitting to standing?

[Shellyh]

From what you've described it sounds very much like Dysautonomia. With it, the symptoms are so wide and varied that it can present as both "everything" and "nothing" at the same time due to the general tests being run coming back normal. When that occurs, a less than knowledgeable physician will suggest that it is psychosomatic, which anyone dealing with this condition knows very well that it is anything but.

Given that Klonipin is working to stabilize your symptoms, I would speak to your doctor about starting a low dose SSRI which for many of us has reset the nervous system, putting an end to the more disabling symptoms. 

Starting one may cause even more disabling symptoms at first, as it did for me, but once tolerated it has worked quite well. 

[WreckingHotelRooms]

Thanks for the replies. 

Shellyh - I am on Mirtazapine, but I could add a SSRI I am sure, nothing can take this stimulated thing away yet, I can stay up for days and we are yet to know why. I couldn't believe 'Feeling Stimulated' and 'Easily over stimulated' are on this site, before when I was looking at POTS it was so heart based. I seen a Cardiologist who is sorting a Tilt Table test but seemed to know nothing about these symptoms. 

 

M@T -  is that something like check my heart (i'll borrow my granny's heart monitor) lay down for 20 minutes, check it before, during laying down and then while I am standing up for 5 minutes?. The only heart thing I notice is exercises is becoming impossible, if i walk up a slight hill my heart is beating out of my chest

[m@t]

PoTS is a type of dysautonomia, its not the only type thats why you may find a bit more stuff reading around here.

You could probably do a HR measurement without any equipment...

Lie down for 10 mins or so and then count the number of beats in 30 seconds and double it. Then stand up and stand still and after a few minutes count the number of beats for 30 seconds and then double the number again.

 

This will give you a supine and standing heart rate in bpm. A rise of more than 30bpm or so is suggestive of POTS.

 

Do you notice any strange flushing / difference pupil sizes between the sides?

[WreckingHotelRooms]

Dysautomomia in general defiantly seems to be in the right ball park. I'm not sure if it's POTS as such. I am worried i'll fail a POTS test, can't seem to find a Dysautomomia specialist in Northern Ireland, i've contacted one in Dublin though. 

Yeah I might do that tonight. 

My symptoms go in some weird cycle, between 'wired' and 'tired', sometimes I am in buckets of sweat and flushed, sometimes not. It all depends what day you get me on, but feeling stimulated is constant. 

Pupils sometimes I see slight differences, especially my right one, noticed this about 3 years ago, use to scare me but mostly the more stimulated/sweating/wired/shaky the bigger the eyes, if i am slightly less all that they look very glassy and have that sheen on them

[m@t]

How old are you and are you male or female? 

Assuming your phone is Android or Iphone you should be able to download a free heart rate app which uses the phones camera to measure your HR.

 

[WreckingHotelRooms]

27 male. 

Just downloaded one. 

So you can have Dysautomomia symptoms (i've 27) but not POTS (with no heart changes?) 

I'll check my heart rate soon

[WreckingHotelRooms]

Laying down was 83, standing up 2 minutes later was 91. One thing to note is i am on beta blockers? (40mg 2x a day to stop shakes) 

[WreckingHotelRooms]

Does anyone else have the extreme WIRED and then TIRED thing I have? I was so stimulated last night, eyes felt like they were coming out of my head, dilated etc, now just woke up from sleeping 2am-7pm after taking 2 clonzepam and i've 'crashed' my body is aching and the wired is gone for now, such an extreme difference 

[haugr]

The eye symptoms are consistent with high norepinephrine levels.  Beta blockers will mask tachycardia if you have POTS.  You should take your blood pressure when you are in one of your wired states and compare that to when you are in a crashed state.  A couple of other symptoms to look for to identify a norepinephrine surge while wired would be abnormally pale skin  and cold extremities.

[haugr]

I'm curious what you mean by bladder shrinkage.  Does that mean you urinate frequently?  And can you describe your fatigue?

[WreckingHotelRooms]

See norepinephrine levels are on the top of this thread, they were disappointingly low all round.. 

I'll not take any beta blockers and check out tachycardia hopefully tomorrow, that's if i don't wake up shaking, then i'll probably need to reach for them. 

Yeah good point, i'll get the blood pressure monitor in and start taking it in different stages, i'll get that organised tomorrow. The wired state won't be too long away, crash only lasts a day or two, could be a week or two till another proper crash. 

I'm never pale or cold. Usually sweating, dilated pupils, stimulated and when it's really extreme just out of it, not like acting strange just feeling so stimulated I can't even keep on track to make dinner well.

Bladder shrinkage happens all the time to a degree, but when i am really 'wired' my two manly areas physically shrink to the point it hurts, my doctor thought this was psychosomatic so I showed him and he was shocked.. and could understand why it would be painful!  

Fatigue - I go from feeling stimulated, to not, my veins don't feel like they are rushing as much, my fatigue always starts after a sleep. It's easy to explain as it happened today. So I slept 2am and woke up at 9am, my body ached all over and I couldn't keep my eyes open, by 2pm my mum was in my room to talk to me and i was struggling to speak. At 7pm I got up out of not wanting to be in bed and having finally got the energy, i ended up having to sit at the kitchen for about 30 minutes before I could stand for 10 minutes and make a stir fry, everything was super hard work and slow. Pretty much like I had been run over and was half asleep or something is how I this fatigue 

[haugr]

Interesting.  Were you in your wired state when you had the catecholomines done?

[WreckingHotelRooms]

Yeah that's the strange part about it, i thought with wide eyes and shakes at the time they would be a lot higher in number. Adrenaline is 2/3 of the range which I guess is not ideal but I can't find a single person online's result to compare it with. My GP didn't order it so all he will know is it's in range...

[WreckingHotelRooms]

it's happening right now. Wired 4am, feel stimulated, no anxiety, wide eyes, dilated, can't focus, feel slightly 'giddy'. No mood elevation, no racing thoughts, just lots of false energy. Won't be sleeping tonight

[haugr]

My understanding of pupil dilation is that it happens in low light, activation of the sympathetic nervous system, or from a neurological or eye disorder.  My assumption was that your eye issues are from an activation of the sympathetic nervous system considering your other symptoms.  That's interesting that it didn't show up in your labs.  

[WreckingHotelRooms]

Yeah, sympathetic nervous system explains all my symptoms the more I look into it, but what actual disorder I am no closer to. The shrinkage, the dilation, the stimulation, adrenaline rushes and the shakes are all nervous system symptoms. I've had eye disorders ruled out and they react to light okay, as i've shown doctors the many pictures i've taken with huge eyes and they have looked at them. In three years though no one has even suggested what it could be, most are lost when they ring up the hospital or check my notes to say 10 days awake in hospital confirmed, at that point they are lost.

I just need to find a good neurologist who specialises in the nervous system which seems hard to find. I've seen  one who said "if it was neurological with your symptoms you'd be dead" it was £240 wasted for 15minutes. My mums neurologist said that he should have actually investigated it further, so I am going to book another neurologist this week, around 8 weeks wait.

It also seems obvious to me that if 15 other medications which were all pretty heavy like quietapine 800mg etc can't make me sleepy but clonazepam can bring down my eyes and shakes it has to be something in this region, considering it's a nervous system suppressant. Funny that I am not allowed them under the NHS, yet know people who get them for anxiety never mind the h*** i'm living. 

I just thought on reading Dysautomomia it could be it, it was the closest thing i've ever read with the symptom listed on this website 'feeling wired', yet the actual POTS thing i don't relate to.  I also know mine started after 2 years of stress which I am sure is taxing on the nervous system but don't know if it would cause Dysautomonia, from my understanding this is a general term for an out of balance nervous system (will research tonight further). 

I do question anxiety, yet I am 'wired' right now with no anxiety at all, yet i am elevated and can't sleep, it might have caused this mess, but it's not causing it, if you get me

[Pistol]

Did you ever look up adrenal fatigue? I know someone who experienced similar symptoms as you describe following a stressful period and she was diagnosed with that. 

[m@t]

Adrenal fatigue isn't recognised as a condition by the medical community is it?

[DizzyPopcorn]

Nope, it's not.

OP, have you had any MRIs / Scans of your adrenal gland? Maybe you have a benign tumor causing your issues (Pheochromocytoma)? I'm not saying it is, but perhaps you should have that investigated.

[WreckingHotelRooms]

Did you ever look up adrenal fatigue? - Yeah this actually what my doctor thought i had a year and a half ago, 3 NHS endocrinologists trips and 2 private they assure me my adrenal glands are doing well, TSH, T4, T3 etc. 

Of my adrenal gland, no I haven't. I have been tested for Pheochromocytoma- (catecholamines top of the page) and told i have no cause for a scan. These are both areas that i thought myself but as i said 2 endocrinologist have said it's not. I am tempted to get a scan of my adrenal gland anyway, but with referrals you don't always even get the chance to pay for what you want i've found..

Love the interest, thanks for all the replies so far

[Terri]

CK1 - are your bowels over stimulated or are you constipated? Have you had an EKG? Have you worn a heart monitor for a period of time? Do you have any other symptoms that would suggest an autoimmune disease, EDS, or any other condition? Are you using any supplements that would interfere with any of this? It really seems like you need someone to intervene on your behalf from your medical community. This has been going on way too long. I am so sorry what you’re going thru. But stay hopeful. You’re young and will get this figured out. Please keep us updated on how you’re doing. Take care.

[WreckingHotelRooms]

No bowels issues. I do find it hard to pee completely though recently. 

I've had an EKG. 

I am double joined which is why I was told to go for a private tilt test by a cardiologist but he had never heard of any of these symptoms yet knew a lot about POTS. 

Thanks so much. Yeah i've kinda been waiting for someone to step up and take old of this, but most like my endocrinologist just thinks it's not his area, my mental health team have exhausted that angle, so I guess it's all down to a neurologist now.. i'll keep you posted, going to the doctor next week, wrote a letter to hopefully get taken more serious, my GP understands this is h*** and feels sorry but just does not (and met with 12 doctors at his practice to talk abut my case) have any idea. We really thought endocrinology would have brought up something but my next meeting is a meeting about getting discharged... even been to Harley Street, which I could just sign myself into hospital and them see this 'tired' and 'wired' thing for themselves. 

Yesterday for instance fell asleep 7pm-10pm watching the football, woke up and felt normal for about 30 minutes, then the stimulant started and I now have been up 10pm Wednesday and it's now 4.30am Friday morning and no sign off sleep, so been awake 30.5hours so far with 3 hour sleep and i am not tired. 

[DizzyGirls]

Does melatonin or Benadryl have any affect on you?  Just curious.  I have one daughter who relies on melatonin to calm her sympathetic nervous system down at night and it also helps her pain from a multiple spinal fusion she had last summer.  We were really surprised that it had helped with the pain, as we are having a very hard time keeping it controlled.  Hope all the people here are able to help get you better!