Anyone having balance problems with primary APS? I'm afraid I"m going to fall.

[jean48]

[MaryF Administrator]

Hello Jean, yes a lot of people on here, have this sensation, I have had it a couple of times in my life, but not currently. Lots of people will come in here later with similar experiences. All the best Mary F x

[Storky]

Hi Jean - I don't have primary APS, secondary I believe they call it. But then I seem to have secondary everything and not sure what the primary is Ha ha!!

Balance has always been an issue for me. I developed something called Mal de Debarquement Syndrome back in the middle 80's after doing 10 long distance flights in about 15 days. I have to wonder now looking back if it was more APS but still! That seemed to be the start of my balance problems which have always been bad since then.

I had a stroke last year which affected my Cerebellum so now I have a double wammy. For the months after the stroke they used to make me reproduce the balance problems in order to make the brain remap a better coping strategy. It was horrible! Better now but I still can't walk about outside without feeling as if Im going to fall flat on my back or people think Im drunk!!

Do you use sticks or a frame to walk to stop you from falling? Sometimes its better to use aids and be safe rather than risk a fall with all the added complications that would bring.

[jean48 in reply to Storky]

I've had two bad falsl of late. I rack my ankle up the first time and cracked my ribs the second time. I probably should have a walking stick.

Jean

[Storky]

If you are in the UK there is a company that does some really nice young ones. Not ones for older people - sorry don't want to offend anyone but if you are young you don't want to look like your grandmother! PM me if you want the name.

I think a nice stick is what you need and it will give you confidence too. You can also get ones that collapse down to put in a bag and also get a table clip so that they don't fall over if you sit at a table.

Hope thats helpful.

[tiredmum]

Hi Jean,

yes yes yes!

I suffer from terrible balance which i am sure is due to the APS, coupled with poor speech when my INR levels aren't stable i must look like an alcoholic!!!

I was 29 when i first started loosing my balance, I am 40 now, but i still refuse to use a walking stick. I use furniture, hand rails and walls to help me round the house, and I never go out alone anymore due to the dizziness etc. i am also not allowed to drive any more which sadly took away my independence

Some days aren't as bad as others thankfully. I have just been put on betahistine dihydrochloride ( i think thats how you spell it) and they seem to have helped a bit.

However don't give up

[jean48]

'I'm a tired mom too. Did you ever have a MRI to explain balance issues?

Jean

[Bethanne]

Jean check into Antiphhospholipid Inner Ear Syndrome

[jean48]

Thank you!

[DelH]

Hi Jean

I have balance problems regularly, although not every day. I tend to have bouts that last for around 10 minutes, and sometimes this could happen a number of times in a day. I can also go a week and not have it at all. When it does happen it can be very difficult to deal with and all I can do is sit down and wait for it to pass. Naturally, this usually happens at the most inconvenient times possible!

I think it is pretty common with APS unfortunately

[Sue2803]

I too have balance problems and have had several falls, resulting in dislocated elbowone time and a broken wrist on another occasion. Think is quite normal with this horrid illness

[MrBigDog]

Having been diagnosed in late 2008, I too have balance problems, especially when I tilt my head back...like when I'm washing my hair with my eyes closed. This has been going on for a while now, and I thought I had "something else" wrong with me! Unlike those of you in the UK, my doctor here in the states wants me to maintain an INR of 2.0 - 3, have yet to be able to convince him I may be, and feel, better with it higher.

[SharontheSheep]

Hi Jean

I suffer almost permanent balance problems, even when lying in bed - very funny when you thing you are falling one way so you "correct" yourself and by doing so end up falling over completely the other way. I have had some very spectacular up endings, thankfully with no major injuries. I started with sticks (if you use one make sure you are properly fitted for it because you can do your back in if you don't do it properly - trust me) but found it too painful and exhausting (arthritic shoulders :() so I now have a wheelie walker which has proved invaluable as it has a seat for me to rest if things get too bad. Having 4 wheels and the frame I feel totally stable and it has given me a freedom outdoors I didn't think I'd ever get again...I'm 46 and the hospital acted like they were doing something terrible giving me walking aids but it's only negative if that's how you view it.

Take care love Sharon x

[jean48]

Sharon you have such a great positive attitude, So why does the antiphospholipid antibody syndrome cause balance problems? Do you have white matter disease issues like me? I don't know if should mention my balance problems to my Rheumy. There is no way I'm riding a bike again and I'm so scared of stairs.

Jean

[Herb]

APLS can cause balance problems if it affects parts of the brain, or the ears.

[Tomcat]

Occasionaly I get really bad balance problems along with dizziness but it usually passes in a couple of minutes, these attacks scare the crap out of me as that's how I first got ill with it, I got REALLY dizzy one night (couldn't walk in a straight line, kept falling over) and then started vomiting and didn't stop.