Incase anyone's interested in the CNS and ME I thought I'd write some experiences as Cort was mentioning it.
I already have a diagnosis (twice) of POTS/Dysautonomia in Hospital.
My pulse was 170bpm on a TILT test after 2 mins and I got bad chest pain last time it was checked. Interestingly, this was worse than when I was bed ridden, and I got the same pulse rate but lasted 10 mins on the test.
Proving POTS is not caused by immobility - as Psychiatrists like to claim.
(Many Psychiatrists do not belive in POTS, or that someone with ME can have it). The normal word they use is 'de-conditioning'.
In the clinic I was in, they use a $40,000 computer and equipment that takes your blood pressure every SECOND on your FINGER amongst other things. Plus lots of other sensitive tests only a few hospitals in this country have. Autonomic tests.
On a TILT, the cardiologist said I developed a 'Saw Tooth' curve that shows my sympathetic nervous system is going insane - to stop me from passing out as the blood is pooling in my legs/feet and out of head/heart. Without this, I would black out from standing up, I was told. Hence I have POTS - it's a compensatory measure. Other people simply get hypotensive, and fall over.
So take that into consideration using super sensitive tests very recently and now wind the clock back........ 10 years ago I had a basic test for autonomic nervous system issues - called a heart rate variabilty test that uses an ECG connected to a PC. They use it in hospitals to measure cardiac function. Again on this test, it showed:
Super sympathetic nervous system standing up.
High sympathetic nervous system laying flat with eyes closed.
Zero para-sympathetic nervous system laying flat with eyes closed.
ZERO! That's crazy.
Parasympathetic nervous system (to my knowledge) is vital for health, sleep and energy restoration. So it's never changed in the last decade. The first symptoms I ever got with ME, being a keen mountain biker and adrenaline junkie - was getting panic attacks, chest pain, adrenaline over rush - simply from overtaking traffic on a road, or cycling fast and doing stunts and having fun - addmitedly when very knackered - only down my road!
(My hair would feel like it was standing on end, when I came to a stop signal driving). This inevitably spilled over into cardiac pain, tachycardia and shaking. All with no conscious input. Simply the act of driving, or listening to music (Techno).
To put that in context all these years later, I cannot leave my house to get to a doctors appointment 1/2 mile up the road without drugging myself on Diazepam. I can start shaking and get bad chest pain, or a sudden tachycardia. I have to very careful not to set myself on Dysautonomic fire basically - and live life like a recluse. I would describe having ME and POTS is like being flammable and moving, eating, peeing - basically anything, can be a spark.
I tried going to college when I had a brief remission. Again, the same horrible hair standing on edge feeling (like a 'ghost' sensation/shock), over a simple argument in class appeared. I got severe chest pain and had to be taken home, another time to ER! Yet I wasn't that bothered, just a disagreement (emotional) kicked this off. Same as if in a restaurant. A customer started yelling, and I ended up going to ER, again. It's impossible to be honest.
It's hate not living a life with POTS/Dysautonomia - and having ME ontop just makes matters so much worse. Apparently people with POTS aren't as bad as this, as they're otherwise healthy, they don't have the profound muscle weakness - as so their hearts can take it. Mine can't. Certainly can't as I get older. Pulse of 130 now and I have difficulty breathing. I never hyper ventilate. Maybe this is my down-fall? I am too exhausted to breath faster, I can try and breathe deeper, but not faster. Way too worn out. So I end up nearly suffocating. Only way to deal with that - is never trigger it. So I don't go out my door anymore. I was in 2008, but I got a lot worse.
I've never met anyone like me, or heard of people with this amount of messed up nervous system. Even using a phone, I get totally innapropriate input someone handing me the phone, and can tip over into a panic attack (not me panicking, my brain dysfunctioning). So I don't talk to anyone.
Lastly, make sure you pick your friends well if you are like me and reading this. Your enemies can see you are powerless and hold you to ransom by your own body - simply by setting you off into what I call an Autonomic Storm. Basically a totally inapporpriate 'burst' of sympathetic nervous system activity than can induce convlusions, seiziures, angina, even SVT.
In Hospital a nurse had to go borrow some headphones from a patient, and put them on me and I was forced fed Maria Carey! Eventually I stopped shaking and my pulse and blood pressure were less dangerous. My body gets 'stuck' in this mode. Nurses just think, what the hell? That patient is shaking violently, but smiling and perfectly calm - but is body is going out of control on the bed.
Frustratingly (understatement) this does not have to be caused by an inappropriate stress response, it can be caused by exercise (my version) and even romantic activities.
When I had a girlfriend, I visited ER over 30 times, and hardly ever since.
This was always triggered by romantic activity - the heart being 'flicked' into a very fast pattern of IST/SVT, or many hours later - suddenly developing cardiac issues, or nervous system going wild. So I could walk into a bedroom, and not be able to walk out - literally. Now that's what I call devotion. She left me anyway.
The worst shaking I've had was caused by eating a biscuit, momentarily choking - and then ending up on 10mg of Diazepam and waiting for an Ambulance due to going into hyper drive. Paramedics took me to Hospital where I continued to shake for a long time - with them scratching their heads, asking if I was on 'SPEED' (no joke), or was I epileptic.
Back then, I didn't have a diagnosis of POTS/Dysautonomia, and they simply wrote me off. On a positive note: Getting a TILT test and other Autonomic Nervous System tests is the best thing you can do - to stop being labelled as Psychiatrically ill. However, you're still at the mercy of your dysfunctional body/brain.
For example,despite being totally calm and relaxed, just typing this I have freezing cold 'adrenaline' hands -as if I am in a screaming row/argument yet I am not. Simply the brain kicking off another little event. Now I have edited this, my hands are nice and warm and I'm not twitching/jolting at all.
To make you guys see what I mean maybe, I used to get very shaky, and again ice cold hands and chest pain - playing video games over the internet years ago. Despite knowing it was just for fun. It's as if my brain (conscious) cannot determine that a video game is just fun and a laugh - it launches me into an incorrect adrenaline storm, and on occasion induced convulsions, or chest pain. I can't think of many disease that cause chest pain from playing an exciting video game that you enjoy!
Someone should do EEG studies on people with ME and POTS and see if brain activity causes this (e.g. driving, video games, stress, talking) alters brain waves.
At my worst, just eating does this. Often when I eat, I still get little shudders and judders - which are usually the start of convulsions/big shaking attack that need hospitalisation. It's like eating ice-cream, but much worse - like a tremmor/spasm inside. This is what Dysautonomia does, and I hate it. Even emptying your bladder can kick this off, or kick off a sudden vertigo/dizzy attack balance loss.
Basically, any nervous system activation/alteration triggers it.
One episode in Hospital, a doctor once (on a ward round) hooked me up to a heart rate monitor, go away - then come back with his staff and point to the heart rate speed and notice it was between 120-150 simply from the effort of talking to him. Addmitedly this was when I was very very sick and felt like I was dying basically from exhaustion and couldn't even go to the toilet,wash, or barely speak, but that's not the point, there's a reason it does it, and I wish there was some help.