Sticky Blood-Hughes Syndrome Support

How do you know when your INR is not within range?

How do you feel when it's too high?

How do you feel when it's too low?

My INR is by no means regulated yet. I get episodes of double vision, confusion and worst of all dizziness. The dizziness can be the worst of all because at times I am so off balance, I can't walk, get nauseous and throw up.

I've only recently started putting these episodes in my INR results diary, but cannot make a connection to my INR level in anyway.

I don't suffer with major symptoms as most seem to. So it can be hard to equate what others are going through with what's happening to me.

My doctors all seem knowledgeable with treating APS specifically, but don't seem to have answers for me about what I experience.

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How long time have you been on warfarin?

What is your therapeutic value? I Think you have told us that you have been in range only twice, but I answer so many so I can have forgotten. Bad memory also ....

You wrote something about plaquenil also, did you not?

Kerstin

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my current range is 3 - 3.5

tested Monday at 5.4

so of course I'm still not regulated.

working on getting back down to range.

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Been on Wafarin since August 2014 and yes, I do also take plaquenil (generic version).

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Hello

The dizziness issues that you are having may be due, as mine are, to ischemia in the ears, rather than your INR. The blood vessels in the ears are only 0.1mm in diameter, i.e. smaller than some platelets. I saw a consultant audiovestibular physician and you would be well advised to try to see one too.

Prof Hughes took me off Warfarin and put me on Fragmin shots, which have improved my dizzy spells immeasurably.

I hope this helps.

Dave

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I will definitely consider this and will ask my docs. However, yesterday's INR result was 5.4. well above my range. Last night while getting ready for bed, I had a major dizzy spell that made me vomit.

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That sounds like ears.

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Thanks dave that helps me I have suffered from lightheaded ness since my stroke 5 years ago but last few weeks its much worse dizziness and now told its vertigo have been given exercises to try to clear the sludge in my ears which make me more dizzy but hopefully will help in the long run

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It is great you are keeping a diary of all results, you certainly need to tell your consultant to look into this, and the diary recordings will help with this process. Hope you feel better soon. MaryF

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Morning, I find that INR , high if feel light headed, low makes me muddled words memory worse although not brilliant when it's in range.

Dizziness mine has been awful so bad that I have had to crawl to the toilet

Years ago I was put on betahistine, 16mgs x3 a day, I don't have menizure diease that's what it's usually prescribed for

It can be taken with Warfarin and has hardly any side effects, I know it works as I came off it a couple of years ago and all the symptoms came back

I would have a word with your Gp as it needs to be prescribed, hope it works for you too

Their are other medications for dizziness but most have side effects

Another thing you could try is a soon as you feel a dizzy spell coming on, pinch your nose and blow though it like when trying to pop your ears like after flying

You have to do it immediately or it doesn't work

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Thanks everyone. This helps me.

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Good luck! We are here for you.

Kerstin

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