Sticky Blood-Hughes Syndrome Support
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stroke and hughes

Without going into long details I had a stroke 13yrs ago, at 46, but it happened under anaesthetic and the neurolgist I was referred to lied to cover his colleagues. It affected my balance and cogntive functioning ( I was depressed apparently and had an inner ear problem!!!) and I was off work for six months, with no support, and managed to get back for two years before I had to give up. It was then, after I saw a different consultant, that I was diagnosed with Hughes.

I would be interested to know if anyone else has had a stroke that has affected their cognitive function - I have made a good deal of recovery, and warfarin helps a lot, but still find situations where I become only too aware of my deficiencies, and that really knocks my confidence.


4 Replies

Hi Caroline,

I have had two strokes one in97 which made me a wheelchair user and the second in 2008 which effected my right side and i find that when i try to do things which involve a lot of concentratsion i sometimes get them the wrong way. I alos find with the side eefcts of the APs sometimes i am not sure if its the APS or the stroke that is causing me the problems i find it is silly things like holding a razor or trying to read a lot of words it just does not work sometimes am happy to compare notes and give you some hints on what i have used to get round some of these issues.


Hi Caroline

I am just like you! I had an 'incident' 15 years ago which everyone told me was not a stroke as nothing was found on MRI scan. They said I had no weakness, but like you I had coordination and balance problems which were dismissed. I also had sensation changes. I was diagnosed with Hughes 6 years ago folllowing a clot in my finger, and then things fell into place. I too am on warfarin and better for it when I am in range, but like you I have times of real stress with balance and coordination and spatial issues, which are different from brain fog.

I now also DO have weakness and muscle wasting on my right side which is a nuisance, due to the compensation or lack of use. Am trying the gym but it is soooo slow.

Take care Ann


Hi Caroline

I had a stroke earlier this year and it too has affected my balance and my cognitive function. I have just been dx with Hughes. The first thing I would say to you is that it would be important to find out in which area of the brain your stroke happened because different areas of the brain will have affected you in different ways. Hughes symptoms can of course also affect your balance and cognitive ability so these issue could be down to one or the other or a bit of both.

Even though it is 13 years ago since your stroke every PCT has a stroke co-ordinator, so you could ask to speak to yours through your local authority. (Just call up your council and ask who it is and their contact number). I would ask your GP for the information about your stroke and you could then ask to be referred to a neuro-physio or speech and language specialist. They will be able to tell if your cognitive problems are associated issues from your stroke and offer ways to help you cope with them.

My advice to people dealing with cash strapped GP's when asking for services is to be pleasant but firm and if you dont get anywhere threaten to go to your PCT! It usually does the trick!! You may have to wait for a long time but you do get there in the end.

Good Luck.


Hi Caroline

I had a stroke 5 years ago on a plane. I have been very determined to get my life back and have been very lucky and had good family and friends support. I am left with a heavy left arm and hand which is weak and a dull pain (Gabapentin helps take edge off the pain) Regarding cognitive my spelling, speech, memory and balance and some times coordination is not what it was. It is worse when I am fatigued / APS flare.

I work full time.

I am now totally dependant on Warfarin and have Inr range 4 to 5. Thank goodness for anti coagulation!!

All the best



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