Sticky Blood-Hughes Syndrome Support
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Eye issues

I have APS. Diagnosed 11 years ago. Has it many years before. 2 strokes. Heart surgery. Inr issues like many. On Coumadin and target inr of 4.1 and in anti platelets. Other various issues including thyroid to name but one.

Lately I have been having issues with vision. Mani ly my left eye, which is my stroke side. Getting double vision or the crosseyed feeling isn't new to me. What is weird is I have had stacked double vision. Two images on top of each other, instead of the side by side or offset somewhat. It cam last a few mins to an entire day and resets itself overnight it seems.

Does anyone else have this and k is what causes it, is it a cause for concern? I tend to blow things off. I'd i go the Drs I feel I am either feel like I am fobbed off or end up with a new issue that requires more pills forever, so I avoid it unless I really have to go

Two weeks ago I picked up yer another virus, flu type symptoms, sent me into a flare. Now my stomach is bloating like I am pregnant again, and it comes out of nowhere. This morning was a "skinny" morning where I was feeling a little slimmer. A few hours later I look like a bloated beached whale with an 8 month preggo belly which isn't being hidden under my large hoodie.

Anyone else have issues like this? Also a small cut I got at the weekend just started bleeding again out of nowhere. Ugh. I think it's time for my pills again. Maybe I will feel less stoned, feeling that way for no reason is horrible

10 Replies

Obviously it's difficult for us to comment but I know when I'm tired or in flare my sight always feels worse even though it probably isn't. I would always advise however getting any double vision checked out. This may be more neurological than eyes.

Bloating would indicate possibly gluten intolerance if not already GF. If not that a good probiotic may be needed.

You may just need a bit of a tweek with meds but it's worth getting a check over with your specialist.


Thank you for the reply. The only thing I ate yesterday was a grilled chicken salad. So no gluten involved.

My tummy has been an awful issue for a couple of years. First they said it was my ibs, then it was colitis, then IBD. Then they decided it was my lady bits. One day at work I almost collapsed from intense pain that made me shake and I did cry. I was admitted to hospital and found out I had one of my ovaries heamorahge and I was losing quite a bit of blood. They got me off my thinners, into lovenox and 4 days later I had a total complete hysterectomy. My belly stopped swelling from pooch to nine months in less than 60 seconds. Now it's swelling again. And feeling absolutely crap. I never leave work or call in. I left at lunchtime and came home to lie down. I almost walked into a wall at work because I didn't realise I was so close, and yes I was watching where I was going, so happy I put my hand out lol


For your tummy bloating I would if it were me consider trying going GF for a week or two to see if that helps and also either get a probiotic or some nice live yogurt. When you have had lots of tummy problems like yours it's possible that your gut bacteria is upset. If it does not settle you need to ask to be checked for Helicobacter Pylori which can be treated with antibiotics but will give symptoms such as yours.

As for eyes and balance you must get that checked out.


Do you know what? We just get in control & our body says HA HA -SURPRISE lets give you something else! All related, lets just take day by day.


You're so right, from feeling quite normal (whatever that is😊) for a few days whoosh! Bad head-hurt(not an ache with me) can last 4 days Heavy leg, light sensitive(more than normal) sooooo tired, the list goes on, so I deal with "stuff" best I can then when I feel great😏 I'm up and running 🏃


I would go to the Doctors this am, take someone with you ? What is your INR you need to have it checked today if not already done so ? Antiplatlets as well, if it were me I would question it

Don't be fobbed off we really have to look after ourselves as in my experience not every Doctor does



I agree with daisyd!

Also is your INR taken often enough and is it stable so you know where you are reg anticoagulation? We may have bleeds also but rare though.

Best wishes from Kerstin in Stockholm


Before I went GF I had severe bloating spells and my weight could vassilate by 5 pounds within24 hours. Since GF? All gone. --except on those occasions when i accidentally ingest some gluten, in which case a glass of kefir helps tremendously. Do you have avcess tokefir? It is a great probiotic.


I have looked it up because I am trying new bacterias. I eat yougurt with accidophilus and bifidus-bacteria. You have to try or even mix them sometimes but take one at a time so you notice how you feel.

We have it in Stockholm and I am going to try it later.



if you have the same flavor sselection we have , I reccomend the peach.


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