Whatever you want to call it, it isn't fun, it hurts, it's annoying, it is in fact the definition of why I am classified disabled.
Last week I went to the hospital for an appointment with an endocrinologist. The hospital system is such that everyone has to queue up to register when they arrive. It is a long queue. I got a pain in my head, and started to see black spots in front of my eyes. A few days previously I'd had a similar problem whilst queuing for a carvery (yum); that time I kept crouching down in the queue as I simply could not stand up. I felt the same in the hospital queue, but when I crouched down to alleviate the pressure, people started to walk around me in the queue. So I stood. The nurse behind the desk saw me start to go, and came around the desk just as I hit the floor. I've been saying I passed out, but I did not actually lose consciousness. I just went splat; my entire vision had gone, completely blacked over, my head was hurting really badly, and my legs went from under me. She sat me down, registered my appointment, and hurried me through the system.
I was told told to put my head between my legs. I had my blood pressure taken. I kept saying to them it was Orthostatic Intolerance so my blood pressure would be back to normal after they sat me down, but they ignored me, took my blood pressure and said "Well it wasn't your blood pressure that caused it!". I was wheeled in to my endocrinologist ahead of everyone else, where he asked me about endocrinology type things, and about the passing out. He too had never heard of Orthostatic Intolerance, even when I explained it to him. He didn't know what I meant when I said that I was seeing black blobs either. I had thought black blobs was a fairly normal way to pass out, since I've experienced it for years. I always thought that was what 'blacking out' was.
So, my description of Orthostatic Intolerance is thus:
Standing up is uncomfortable, particularly standing up in a stationary position. The longer one has to remain in that position, the more uncomfortable it becomes. The discomfort is hard to explain. Sometimes it manifests with an intense pain in the lower legs, yet sometimes it is an intense pain at the front of the head, behind the eyes. It always manifests as an odd discomfort in ones posture. You simply cannot feel comfortable. At it's worse it also applys to seated positions; if one has to sit upright, with one's legs in the normal position whereby they reach the floor from the seat, it too can be uncomfortable. I always either sit crossed legs with my legs underneath me, or out in front of me on a bed or settee. As I understand it, what happens is that in M.E. patients, the blood doesn't pump itself around the body quite so effectively. In a healthy person, when they stand up, the blood pressure in the legs changes, in order to pump harder against the increase of gravity it has to fight. In someone with M.E., this change is delayed, so the blood starts to pool lower down in the legs (hence the leg pain). Sometimes it takes a few minutes to catch up, othertimes it can take longer.
You will find that if you click the title of this blog post it takes you to an article about Postural Hypotension on the Action for M.E. website. This article described this uncomfortable sensation in a more professional manner than myself.
"Faintness which is worse soon after standing up, especially in the morning, is indeed due to a transient fall in blood pressure. It’s not about having low blood pressure as such, but about a failure to maintain normal blood pressure on standing. Two main factors seem to play a part in this. One is that the reflexes that normally maintain blood pressure when we stand up are a bit sluggish to respond. This can be due to the effect of the illness on the autonomic (inner) nervous system or the effect of ‘cardiovascular deconditioning’ – in other words, the reflexes getting out of practice, (for instance as a result of a long period spent in bed)."
And apparently, I should be able to help myself out of this painful pit. Though, I have to say that the reason I spend so much time in vertical positions is actually because of this symptom, so I'm not convinced it causes it.
"The problems can be reduced by getting up slowly and in stages, and generally ensuring that one spends a little time upright each day, even when severely disabled. [...] The other factor is that people with CFS/M.E. may be chronically a little short of salt, whether through dietary changes or other secondary effects of illness, so a little extra dietary salt may help; the kidneys will get rid of any you don’t need."
My aim now, is to make my doctors aware of it. The article is very useful, and has brought to my attention that doctors may know it by different names. I am sure there will be other articles if I seek them under these names. The CFS specialist I saw a few weeks ago certainly had not heard of Orthostatic Intolerance, so perhaps if I print this and a few other materials for her, it will help, and then hopefully she can help me.