Sticky Blood-Hughes Syndrome Support
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Not my Usual Self at the Moment

I am having a bit of a bad time at the moment. Feel dizzy and sickly most of the time and have no idea what is going on inside my brain. Yesterday I took my calculator to the doctors to book an INR appointment instead of my diary, and this morning I washed under my arms with hair conditioner! I am finding this all a bit difficult to cope with as I am used to being very active and organised Last night I woke up with a tickle in my throat that turned into a major coughing fit and ended with me spending half an hour being sick, Not sure what that was all about.

My INR is in range and so not sure why this is all happening really. Does anyone else have these problems?

11 Replies

Hi Glitterwitch.

I have had these kind of issues, even on Warfarin. I have not had them very much and, when I do get them, they are much reduced in intensity, since converting from Warfarin to Fragmin; my head is now much clearer.

The dizzy and sickly feelings, I was told, when I was referred by Prof Hughes to Peter Savundra, at the Portland Hospital, were due to our 'sticky blood' having difficulty passing through the very tiny blood vessells in our ears (only 0.1mm in diameter).

Best wishes.




That would make sense about the ears as I have a sort of tingly feeling in my right ear most of the time, and occasionally in my left ear. Heyho, i suppose I will just have toget used to it!!


I really hope you feel better soon, can you talk with your doctor about this? Hope so. Mary F x


Hi Glitterwitch

At my worst, I found those sort of symptoms quite depressing as I felt like I was going mad! How have you been supported by your GP? I believe it can affect your whole wellbeing if you don't have the correct support so would encourage you to speak to your GP, as Mary suggests. I am not sure why this is happening if your INR is in range but sending you good wishes and hope you can get some support.


Thanks for the support. My GP openly admits that she knows nothing about Hughes, but is willing to learn! You are right, I should go and see her and see what she says. Part of me thinkgs I am making a fuss about nothing and should just get on with it, and part of me finds it really hard atthe moment. Heyho lucky i have got my knitting to keep me going! xx


I would suggest that she contacts Prof Hughes office and speaks to Kim about getting an invite to the Professor's next GP event. He has offered the same to my GP. Maybe a start? :)


Well I can only try can't I.


I really feel for you. I know exactly how frustrating these events can be.

Yesterday I turned up 30 mins late for Doctors appointment despite checking my diary several times.

I have very little faith in GPs they are becoming booking agents for specialists. Not like the family doctor we grew up with. They used to make it their business to know all about you and any illness you suffered.

I think the GP event is a great idea.



Sue, I was also late for a doctors appointment because although I kept checking the time, my brain wasn't processing it. My appointment was at 3:45 - 30 mins to get there - and at 3:20 I thought - just time for a cup of tea! Then is suddenly hit me and I rushed out !

I know what you mean about GPs. They allocate you a 10 minute slot and then rush you out - no time to have a chat really!


I feeling exactly the same right now glitterwitch, and this is why I love this forum!. I'm feeling right down in the dumps right now, with lots of back/ neck pain. My arm tingles constantly and I'm really struggling at work. Seen my GP today who is organising some physio, and as I'm aero negative, another round of bloods, and finally a referral onto a rheumatologist , I thanked my doc for letting me rumble on, and I would normally agree that it's a shame your GP doesn't have more personal knowledge, but right now I'm happy to be getting referred on! Sarah x


Sorry to hear you are feeling so unwell. I love this forum too - just putting things in writing (well typing) somehow makes me feel better ! It is somehow comforting to know that others have the same problems and you are not alone. Also comforting to know that you are not actually going mad! Hope your referrals come through quickly. xx


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