Falls Anyone?

[OverTheHills]

Hello all
I've had ME for 9 or 10 years and things improved a lot 3-4 years ago when I got my POTS treated (and then diagnosed... but that's another story).

Out of nowhere I have recently had two unexplained falls (one 4 weeks ago, one last Thursday) in both cases one moment I am walking along a flat dry pavement and next thing I know I am just about to hit the ground. No feeling dizzy/weak/sick/POTSy beforehand, nothing unusual going on health-wise, no trip, slip, distraction or collision. Both times I have hurt myself (coccyx/ligaments first time, facial bruising and cuts/scrapes this time) and I'm concerned about the lack of warning and maybe breaking something next time.

Thankfully I am getting some investigations done - an ECG for starters (normal) no infections in basic bloodwork, basic neuro exam normal. They are going to try to get a Holter (sp?) monitor for a longer term check on the cardio situation.

Anyone else had this sort of thing? What investigations did you have? what treatments?
Ouchily
OTH

 

[alex3619]

That might be OI syncope. I have had it happen hundreds of times. You don't need to have any symptoms before hand. If you start seeing it happen more often on stairs, and standing up, that would tend to confirm it. If it is this then its a loss of blood to the brain, and standard monitoring will fail.

 

[WillowJ]

I lose my balance frequently, though I have yet to hit the ground, so it's not as severe. My doc did an MRI and was satisfied when I didn't have MS. I wait for the day we can find more things with imaging, or doctors know to run PET scans, or something useful.

 

[Martial]

Spect can be useful to see blood flow and perfusion of different organs.

I have similar issues but I have lyme and its pretty common, though mine happens more from herxing.. I will sometimes get really blurred vision and then lose all sense of balance and fall to the ground in a really intense vertigo state, I do have an infection in the CNS system though so it makes sense.

Nervous system symptoms can trgger over 1000 different weird things, same with blood flow issues haha

 

[Seven7]

Yeap I had this for a bit, I think is just OI for me (I just waited it out) I am lucky to get warning when passing out (I start to see black slowly) Vs for a while I would just drop! It was so bad I passed out once coming out of my office with one foot in the air mid step and WHAM gone, it looked as if I jumped off my office and came flying out (I hit a rolling chair in the process and gained momentum!).

When I get any OI worsening I load on extra electrolyte (pedyalite) and that seams to take care of whatever I am having.

 

[Insomniac]

I have never fallen. I just get a physical need to sit or lie down and rest but it's never sudden or severe enough to fall.

 

[PennyIA]

When I was having trouble with my balance, I had similar experiences, the dizziness came on so strong and suddenly that I didn't notice it until I was flat on my bottom. BUT, I did know I was dizzy by the time I was sitting there wondering what happened.

A different experience I had was that I would suddenly fall without any OI symptoms... and it would happen once in a blue moon. I'd be walking somewhere - almost always with something in my arms, of course. And wham. On the ground again.

No dizziness, no nothing. I'd get up and would be fine.

It happened so infrequently that it took me forever to figure out what was happening.

One of my legs would suddenly stop supporting me. Sudden, extreme muscle weakness. I'd be walking, one leg would 'fail' and plop, I would fall down. I still can't really tell when it is about to happen, but lately I seem to be able to avoid falling by shifting my weight suddenly to the other leg.

 

[PNR2008]

I sometimes get too compulsive about getting something in the kitchen, about 30 feet away, when I'm weak and should know better. I'll get up too fast from the bed and I'm half way there when the vision goes gray-like and the high pitch in my ears sounds an alarm and the legs go especially weak. I make myself lie down on the carpeted floor until the symptoms clear. Otherwise I'm on the floor anyway.

 

[WillowJ]

I also have had a leg muscle or joint suddenly collapse. This is different from other loss of balance I have.

 

[taniaaust1]

I fall and end up hitting the floor due to various things, sometimes it can be simply loose of balance, other times its as if I suddenly lost all strength in my legs (like if they were taken out (to me that one feels neurological, this can happen to me with no warning at all) .. or thirdly where I just suddenly go down without warning due to OI. Fine one moment and on the floor the next (thou "often" I can connect that to a trigger, eg raising both arms is something which can set that off which is supposily a POTS trigger).

I dont know which of my OI issues it it is which causes it to suddenly occur as I have all 5 of the ME/CFS autonomic dysfunctions Dr David Bell describes. I think maybe a suddenly orthostatic hypotension ditch or maybe sudden narrowing of my pulse pressure (Ive seen mine a few times on BP monitors get as low as 7).

These sudden drops not only leave me with bruises at times but have left me in very dangerous situations. About 2 weeks ago I had a near miss one when I had oven door open in the middle of cooking a roast and actually nearly fell inside the hot oven (I had quite a scare over that incident, its still bothering me as I got so close to ending up with severe burns. I managed to twist and caught the cupboard side only just in time to stop me landing on the hot oven door and inside of it). Another time I ended up falling very hard into a chemist window (they must very good safety glass as due to how hard I fell down into it, I couldnt believe it wasnt broken).

I fell into the glass of my shower screen at the start of the year and smashed that.. with that one thou I did have warning and was attempting to cool off as I was dizzy with the heat but then ended up falling and smashing the glass. Physio in the process of sorting out a shower chair (I need one with raised legs) as its just too risky for me to be standing there.