I have ME and POTS with a permanent headache. Never goes off. I should add it’s not like a normal headache, it’s unique to having this illness (ME). I never once experienced a headache or should I say ‘sensation’ like this before I got sick.
I’d describe it as an expanded head-feeling, rather like concussion after you whack your head and your brain feels too big to fit in your skull. If I shake my head (gently) left to right it feels as if there’s a marble inside. Not literally of course, just that freaky sensation and it hurts. As I have chronic virus infections, this headache is worse with a virus and I get a numb face on the right side and numb teeth too. It’s pretty unbearable. I think it’s called ‘transient neuropathy’. The weird numb thing.
I tested my MIP-1 which is a marker for brain cell inflammation. (glial cells). And it’s sky high. I found a research paper also showing glial activation shows up on a PET scan in CFS so that’s interesting.
No surprise then I have POTS too, probably something in my CNS messing around with autonomic nerves. Then I did more research and found that *some* POTS patients have autoantibodies to ganglionic acetylcholine receptors! So that would make a sub-group of POTS patients classified as having some kind of autoimmune autonomic neuropathy. Very interesting as it would make this sub-group as having an autoimmune state and possibly able to have some treatments.
Imagine what all that immune activation could do to your blood vessels or even arteries over time, say, decades. CCSVI again, or at least possibly. I don’t know if CCSVI is related to endothelial damage but that occurs in ME due to mega high oxidative stress.
If someone said to me, define your headache since you have a diagnosis of ME & POTS I would say it feels like no blood is in my head 24/7. Another reason for my disability. If I am able to stand upright I get post ‘upright’ vertigo. A delayed response. If I have the muscle strength to walk or a freak one-off day of being able to do a lot more. (Walk up and down the stairs, bend down, stand up, lean over etc) then I’d end up with a vertigo attack and be unable to do a thing for days as it’s so bad. So something in my brain reacts to being upright (or the immune system does) and reduces blood flow and increases inflammation. Since I got sick I can’t lay on my side, e.g. to play with the cat or do whatever one does on the floor (e.g fix the dvd player) as again that triggers balance to get worse either then (feel off balance) or in attacks afterwards if I did something huge like help wash a car, or any task that involves not keeping the head in an static position.
Admittedly this may be nothing to do with POTS and its’ another illness I have. On checking the research, people with ME have reduced blood flow to the brain (hypo-perfusion) on SPECT scan. I’m sure this ties in with CCSVI. Not enough blood getting to the brain has to be something to do with micro-vasculature constriction (central?) or immune mediated signalling messing around with brain lactate. And yes, this is sky high in ‘CFS’ too. (brain lactate).
It’s interesting to note I got an infection and suddenly became severe from mild, and this ‘headache’ has never gone from that day, which was around 15 years ago now. The POTS came on later though, in terms of being so extreme I had to be hospitalised and thus finally got a diagnosis. That too was caused by a virus. Woke up one day and literally couldn’t sit up.
If it interests anyone, when I did a Valsalva manouvre in the autonomic unit I had extremely high BP and had to abandon the test (you’re meant to blow into a tube for 10 seconds). When that happened I got an extreme pain in my head (blood pressure overshoot). The person doing the test seemed surprised.
Lastly (is anyone still reading this?) when I look down at my chest (e.g. if I was shaving) I can get a freaky sudden blood pressure rush. Now to me, this is the only ‘proof’ I think I might have CCSVI because I’ve never heard anyone else with POTS say this before, or CFS.
Sometimes it can get ‘stuck’ and its’ very very scary as I nearly lose my hearing (rushing sound like the wind and neck feeling squeezed) and feel like I’m going to burst. Many years ago when I was in hospital I got this too, when passing urine (CNS message causing a dysautonomic response) and when standing up off the bed once. Like very rare attacks when relapsed.
I have concluded this is something (possibly) called something ‘autonomic dysreflexia ‘? Yes I forgot the name, but it’s a dangerous state your CNS can do to your blood pressure. I’ll never forget that happening to me as I was convinced I’d have a stroke as the pressure in my head was incredible. Thank the lord it went off after about 30 seconds or so once I changed position again.
Anyway, so in hospital it was probably that (I was in Hospital for months with POTS) but I am wondering if compressing your neck (to look down, e.g. chin on chest as if looking at a necklace) and getting a similar ‘rush’ is more to do with blood vessels being squeezed or something and thus CCSVI? Again, I never had this when healthy, but it doesn’t always do it. I get ‘caught out’ by it, if that makes sense. I’ll do it (look down) and it triggers it like an attack. So I can’t tell if it’s intermittent if it means its’ CNS or vascular. Which if it’s CNS then presumably that ends my CCSVI link!
Ohh and I get intermittent brain thing in the side of my temple above my ear that ‘vibrates’ on it’s own and it’s painful. I can’t work out if it’s CNS or vascular. It’s involuntary spasm like blepharospasm/Nystagmus so I was guessing it’s something called ‘Temporal Spasm’. That’s my guess, I’m not a doctor but when you can’t get a doctors appointment to discuss these matters naturally one has to go all over the place trying to track down what is what and coming up with a possible cause.
Anyway, that’s how ME and POTS affects me. Some strange blood flow going on!