Dizziness?

[Moonbug]

Hi just wondering how many people suffer from this as I do quite a lot and wondered if it was down to aps? H x

[jessielou]

Hi Moonbug

Yes hon another symptom lots of us seem to have, some of us have trouble with ears that causes dizziness, other times if my inr too high I feel very dizzy and vague.

Take care gentle hugs love Sheena xxxx

[tassie]

Yes dizziness is very common. Only time I don't feel dizzy, sluggish and off balance is when my INR is just right

[Hilariew930]

Hi Moonbug! Yes I feel dizzy at times, especially during exercise. Sometimes other random times, but it comes and goes quickly. I'm only on aspirin and plaquenil (just started plaq).

[norris]

Yes it has been a problem for years

[sangje]

Yes definately - from the vague everyday sort i think i have more or less habituated to, to the episodes of true vertigo lasting a week or more and very debiltating.

[Christin]

Yes, I get dizzy quite a lot. I just close my eyes and let it pass.

[Manofmendip]

Hi Moonbug

Dizziness is part of my symptoms and especially so during my 'funny turns' (see my blogs on those). I am still strugling to find a cause for them and a remedy, if one exists. Some medics say they are atypical migraines and Prof Hughes says they are TIAs.

The ears are involved in them, I'm sure, as I get whistling in the ears during one of my turns.

Best wishes.

Dave

[daisyd]

Hi I had really bad dizzy spells where I couldn't move holding on to something to stop me falling over I had wisling in my ears too I now hardly ever have a problem if I do I pinch my nose to releave pressure if you do it quickly enough it stops I am on betahistine fantastic med has improved things greatly I know I works I came off it for a week and had Togo back on it as I couldn't stand up because of the dizziness it has no side effects for me I on warfarin too please ask your gp to prescribe it it is used for meniears. Too 16 MG x 3a day. Life saver not sure if I would won't to live without it good luck Karen xx

[CountryGirl]

Yes, as said before ranges from the vague sort that live with to the almost instant flash of vertigo.

[pumpkincake]

I too have dizziness and "turns" as Dave describes. They had been quite severe...to the point of using a walker for 3 months. I am happy to say I DO NOT use a walker anymore since I am on Fragmin injections. That in itself says ALOT! Meneire's goes along with APS as well.... THere is autoimmune inner ear disease...here is a link:

cidpusa.org/A/ear.htm

**************************************************************************************

Antiphospholipid inner ear syndrome.

Mouadeb DA,

Department of Otolaryngology, University of California-Davis, Sacramento, California, USA.

OBJECTIVE: This study was initiated to clarify the possible association between antiphospholipid antibodies,

CONCLUSIONS: These data support the hypothesis that antiphospholipid antibodies are involved in the pathogenesis of some forms of inner ear dysfunction, presumably by causing microthrombus formation in the labyrinthine vasculature. Basic science studies are required to better understand the mechanisms by which antiphospholipid antibodies mediate inner ear dysfunction. Clinical studies to evaluate the efficacy of

anticoagulation in this group of patients are also required

[Leigha]

Yes, yes, yes! Thought it was due to other medications. Or seizure disorder. Or....? Seems APS is culprit in so many symptoms.

[Bebe]

I'm sure it's down to APS, Moonbug. Before I was diagnosed I suffered dizziness and balance problems and instead of yoga making me more grounded, the dizziness and balance got worse but since being on Warfarin I'm so so so much better, although I still have the odd 'funny turn' when I look left/right crossing the road. Looking upwards to ceiling/sky can also at times make be dizzy and I have to hang on to something for dear life. Such a pain....

[Rhian21]

I get dizzy often..its weird at night when I go to bed ok but drift in and out of sleep in a giddy state..really scary ! Can last mins or weeks..very unpredictable !

[MrBigDog]

I too get dizzy at times...more noticeable when taking a shower and leaning back to wash my hair with my eyes closed. Happens so often that I have taken to keeping one elbow against the wall to steady myself.

[zonker]

I take Topamax (topiramate) every day or else the dizziness is so bad I walk into walls. I'm also on warfarin. Even on the medications, I still get very dizzy in bright sunlight. Living in the southeastern US, I am limited as to when I can go outside by myself. Usually my husband and I go to Dr appts and the store together if it is hot and sunny. Looking up (at the sky or menu boards, etc.) are a challenge too. Thank goodness for this APS board!

[SueLovett]

I suffer from dizziness all the time. It is particularly bad if I am somewhere where there are a lot of people walking about. e.g. Supermarket, walking in town (which is rare because it makes me feel so disorientated).

I rarely drive now because of this problem and I find it extremely isolating.

Sorry can't offer something more positive.

[Mommaleda]

YES!! Actually, dizziness, fatigue, and loss of thought process; whichs seems to create high anxiety. Current dizziness, numbness with swelling had me look at APS again. I hate to read that others suffer but it's nice to know I'm not coo coo

[Moonbug]

Hi thank you all for answering this question it helps knowing im not the only one and it gets pretty scary sometimes so nice to here from people with same symptoms. h xx

[zonker]

Also, I have a "handicap" tag on my car due to my dizziness. This allows me to park near the entrance to where I am going in case of a dizzy spell in the sun. I agree, it's nice to know I am not alone.

[margaretjo]

I do have terrible dizzyness also vomiting but i have also een dagnosed with menieres so its hard to tell which is which but ive also seen that people can be misdiagnosed with menieres when it really is apls. The only thing i have that is assosiated with menieres is increasing deafness. I dont think that is assosiated with APLS is it

[Lozzer]

Hi Margaretjo. I believe Menieres and APS share many symptoms. After 12 years of primary APS I havent had dizziness, until a month ago. Had two severe episodes of balance, some dizziness, sweating and some vision..the last one requiring hospitalisation. Symptoms cleared in hours except residual minor balance probs.

For around a year I'd noticed increasing pressure in the ears and this can apparently be linked to dietary salt levels. I had been eating a lot more bread, cheese and bacon in that time. I started a low salt diet immediately after the hospital trip and the pressure eased within days and has almost gone after a week with no other changes to my meds. I recommend trying this as its easy and cheap enough to do and helps lower blood pressure as well. Bread contributes most of our dietary salt. I was astounded both at just how much unnecessary added salt there is in all processed, canned and bottled foods, and also at how this salt can very by 50-100% between brands for the same product.

[Lozzer in reply to Lozzer]

I forgot to mention that with the easing of the pressure in the ears so did my balance issues improve greatly so that I'm almost back to normal.

[Mommaleda]

Thank you all for your honesty! I'm in the works of going to my Gp with this. I'm planning on tested for lupus. I've read about the lupus fog and it's way to close for comfort. Does anyone know of a good doc in the south for this?? Haven't found anyone yet....

[DelH]

I'm a bit late on this one, but yes I have dizziness regularly. It doesn't normally happen when my INR is above 3.5, but does frequently when it is below that level. Some days it feels like I'm constantly walking on a bouncy castle and other times I just have a severe spell out of the blue. Sometimes it is just impossible to walk for 5 or 10 minutes.

[Herb]

MY dizzy spells were mainly due to having a siezure when INR not well controlled. Nowadays I normaly just feel dizzy if I bend down. Also I had labrynthitis (inner ear problem) which caused dizzyness and vertigo.

[phoenix77]

Me too, Dizzyness, tinitus, recurrent 'ear infections'. I never put that down to my APS before, mind you all docs have ever told me about APS is no flying, diving or mountain climbing and I have increased risk of stroke or heart attack. I'velearnt much more on here.