My husband suffers from 'spells'. They come on suddenly and the dash of car starts 'rolling' and he occasionally then vomits.

[grammy4him]

He also has pain that moves around from shoulders to knees, neck. The 'spells' plague him the most. He is very social, but since the second stroke, these 'spells' are isolating him. Does anyone else have these symptoms and are you getting relief from any medications? We live in the states and can not find a specialist who understands APS. Also, is there a list of specialists in the USA?

[MaryF Administrator]

Hello, sorry to hear about this, please look at this page, some specialists on here: apsaction.org/ Also if you do not get many replies, please ask for member help stating whereabouts you are in USA - this will help you find somebody. Mary F x

[grammy4him in reply to MaryF]

Our internet is down so replying by phone. I'll check out this site when we are back up. Thanks for your help. : )

[jetjetjet]

hi gram- Where are you in the states - I use hydroxychloraquine- 400 mls a day. I'm in N.H.--------------Get back to me

[grammy4him]

Thanks so much. All they have recommended so far is meclizine (for travel sickness) and that doesn't seem to help. They have tested him several times for inner ear and that never checks out. Ty can never 'make' him dizzy. He ,sometimes thinks it is when he has his head down and looks up or to the side too quickly and it sends him into this 'motion'. I'll ok up this med and write these down. Our gp is trying to learn more about APS. He now agrees after second stroke, his INR needs to be in 3s instead of 2s.

[grammy4him]

His second stroke was just over 4 weeks ago. His balance is only affected when he is having one of his spells, otherwise that does not bother him. Most of the time, it happens when he is doing something that he is either looking down and concentrating hard, or looking down for quite a period of time and looks back up or to the side and then things just start moving. He doesn't describe it as spinning...more rolling...is what he says. That is when he can't walk straight or needs to kneel down if he is standing...feels like he will fall over. His blood pressure runs more on the high side than the low side, but not enough for medication.

How long ago was your stroke? Praying you are getting along better now.....

[GinaD]

Hi. I'm a fellow Yank -- from West ( by God ) Virginia. My strokes were over the fall and winter of 2000-01. My balance was only slitely effected. My biggest issue was with this psychedelic gummy worm which appeared in the center of my vision. And it took years for that worm to fade! I still can not read well with bifocals so I walk around with much abused prescription reading glasses about my neck. But the visual damage has improved over the years. For the first 10 years or so bright light shining in my eyes would trigger a migrane-- which wasn't supposed to happen as I was on warfarin. But it did anyway. But the years ticked away and my susceptibility to this trigger, ( which again, wasn't supposed tobe possible as I was decoagulated!) became less and less. Now bright light in my eyes has no effect on me at all -- though iI still don't read well with bifocals.

I have no idea if this post about my visual problems has any relavance to your issue or not, but I'd thought I'd share. Good lick!

[grammy4him in reply to GinaD]

Thanks GinaD. He has had ocular migraines over the years but has not talked of them lately. He has had vision problems and is bothered by bright sunlight sometimes. He is a hard working farmer. I know he doesn't tell me everything. He gets tired of talking about it. He says he can feel bad sitting around in the house or he can go out and work. He is returning to a sleep study they started a week before his last stroke. They want to put him on CPAP to help him sleep at night. He has been such a trooper. We hope to keep a higher INR and pray his symptoms will be less as time goes on.