having real trouble with severe dizziness. does anyone take medication or do something to ease the spinning and lightheadedness. need help

[packerfan]

[Manofmendip]

Do you have APS?

Dave

[packerfan in reply to Manofmendip]

yes I do

[packerfan in reply to Manofmendip]

yes

live in USA

Dr. here in Milwaukee Wisconsin not very helpful or knowledgeable

tom

[MaryF Administrator]

Hi there who is currently managing your Hughes Syndrome/APS? As is clear you may need a review of your INR plus medications? Where are you located? MaryF

[packerfan in reply to MaryF]

Milwaukee Wisconsin USA

[packerfan in reply to MaryF]

Milwaukee Wisconsin usa have hematologist we do not check inr do not believe he knows much about aps

[Lure2 in reply to packerfan]

. Hi Packafan,

Sorry to hear about your trouble with doctors! You must find an APS-doctor.

I live in Sweden and have Pulmonary Hypertension and leaking tricuspid- and mitralvalves.

It goes with Hughes. Which heartvalve did you replace?

Are you still on Fragmin? I am on warfarin for life and selftest.

There are several good books about APS. "Understanding Hughes Syndrome, case studies for patients" by prof Graham Hughes and also "Sticky Blood explained" by Kay Thrackray.

My best wishes from Kerstin in Stockholm

[packerfan in reply to MaryF]

have hemo dr. rhumy dr. endo dr. to name a few but do not think any are aps savvy

tom

[Bonnie39]

I get these symptoms when my INR is too low. If you have APS your blood should be thinned. Are you on any medication?

[daisyd]

Hi What medication are you on now.

I am on Warfarin years before I was diagnosed with Hughes syndrome I suffered from severe dizziness so much so that during an attack I couldn't stand fell into walls crawled to the toilet to be sick awful you have my sympathy

I was given a drug called betahistine (serc) I take 16mgs twice a day can take it three times if necessary

I no longer suffer from this. I haven't had any side effects brilliant drug meant for menizures disease which I haven't got.

before I was on this drug that if I caught the dizzy spell quick enough, if I pinched my nose and blew as to clear air tubes following flight, hope that makes sense, it stopped it but had to do it immediately.

Still on it worth asking your Gp.

Good luck

[packerfan in reply to daisyd]

thanks will see if I can get some from the gp here dizziness appears to be gone for now after severe nose bleed last night

[packerfan in reply to daisyd]

have prescription but betahistine is not a medication sold in the USA unless compounded to order.

having some made and told it will be ready in a few days

hopefully life will get back to normal for me

thanks for the heads up

[MaryF Administrator]

There are names on this list that you could contact, if your intention is to seek more detailed care. apsaction.org/ MaryF

[packerfan]

aortic valve replaced. doing much better now had nasty nose bleed last evening everything now stable

thanks so much to all how responded to me it really helped

[Lure2 in reply to packerfan]

Hi Packerfan,

I am so glad you feel better. You are always welcome.

Best wishes from Kerstin in Stockholm

[packerfan in reply to Lure2]

thanks Kerstin you were a big help

[packerfan]

things are better for me today dizziness has subsided had nasty nose bleed last night hopefully the fragmin had something to do with it

[momtomany]

Hi. You are near me. I see Dr. Alvin Wells in Franklin. My last rheumy was a quack who told me I'd be alright if I just lost weight :l. My current doctor understands how the disease affects us, and he also monitors for other autoimmune diseases. New visits aren't scheduled quickly, but it may be worth the wait. I recommend either him or his PA Amanda.

Good luck and let me know how it goes.

[packerfan in reply to momtomany]

thank you so much. been seeing several docs at freodtert none who did nothing but put me on different units of fragmin. they were not knowledgeable about aps at all. I am trying to get some betahistine but it is not sold in the US will try to set up an appointment with doc wells. again thanks

[Lure2 in reply to packerfan]

Hope you can find a doctor that KNOWS Hughes syndrome. Several persons on here have found their doctors. I think so at least.

I am from Sweden so I can not help you but I do know that it is so important to be listened to. Prof Hughes says: "Listen to the patient". So very true! Hope you have one like that in the US and who "gets" what you are talking about..

Best wishes from Kerstin

[packerfan in reply to momtomany]

checking to see if I can get an appointment

[momtomany in reply to packerfan]

I really. Hope you can get in with him. If not, there is another one in Brookfield that I've heard good things about. When I remember his name I will let you know.

[packerfan in reply to momtomany]

thank you so much. I am now a patient of dr. wells. two visits and the dizziness and lightheadedness has decreased dramatically. I am no longer a patient at freodtert where they did nothing for my symptoms. again thank you so much.

[momtomany in reply to packerfan]

I can't believe I've just now seem this (we do tend be a senile bunch lol). Anyway, I'm so glad you got in quickly and have seen improvement! I hope things are still going well for you.