Sticky Blood-Hughes Syndrome Support
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Update on health

The pain in my head hurts with no let up now, can not bare standing or sitting for to long, laying down is getting painful too. I have missed appointments, my meds have changed but no different to what I had before. This is now beginning effect all my life. Sat in hospital and all they did was ask about my sleep, yes my sleep has changed as the pain in my head wakes me. My left foot feels cold and numb sometimes. Anyone else knows how it feels to be ignored by the NHS? Ten months of hell needs to stop and abswers to why is required

11 Replies

Hi there it sounds very uncomfortable. Has your team been fully appraised of the condition? Are you under still a neurologist or have they added in a rheumatologist or haematologist. What is your target INR? I would suggest that you rapidly have somebody you trust to go through the papers available on the Hughes Syndrome Foundation website, and also to go to your appointments with you. It is very important that they get your medication correctly sorted. Please let us know the status quo of your are so we can see how we can best give you support.

Also perhaps a referral to St Thomas'. Mary F x


Going back to see Neuro and my son is coming back with me with me too, he is going to say its hard watching me in pain, I dont know what my UNR is nobody can tell me. I think now I would rather have a labour that lasts a week then ten months of pure pain. Nobody has said anything about the four white spots on my brain, the Neuro put it down to wear and tear ? One department dont talk to each other. Spent a weekend in the Leicester Royal imfirmary abd they did sod all, they could not get my meds right or lock them away. The A&E doctor wanted me to see the stroke team and have a urgent MRI neither were followed through, he said I had a mini stroke as my left side was numb :( Stupid hospital


Ok, well you need to get the attention of that A &,; E doctor again, get your son to help you. You certainly need to see that stroke team, neuro's are not always skilled at this diagnosis, although they should be. You need you son to print off some of the papers of the Hughes Foundation Website, and use these, to try and push them, to seek advice from St Thomas, The Louise Coote Unit. . If the stroke team or neuro will not refer you? How do you get on with your GP. I know you are really suffering but you need further detailed help. If the relevant teams speak to some known experts this will change things for you. You do need that MRI... and your blood needs to be thinned to the right level which is your INR which is different for people with Hughes Syndrome:

For ALL the doctors involved with you, the neuro, the casualty doctor, and your GP: & - plenty of medical papers on this site

And if it is too much for your son, get a trusted friend also to help with this. Chip away at this, systematically, politely and firmly. Let us know how you get on. Mary F x

ps some of us have out of desperation gone privately to London Bridge Hospital for urgent diagnosis, but this can cost a bit.


Also give all the papework to the the neuro as well, so you need to copies.of anything you decide to print out and a definite pointing in the direction of perhaps a phone call to the unit suggested above. Mary F x


Thanks Mary I just want to get rid of the pain in my head it makes life hard to live, I miss out on family life as all I want to do is sleep :(


Karen, I can't stress enough to you without trying to scare you that you need to urgently go back to A&E and take somebody with you along with the website address of the Hughes Syndrome Foundation.

The pain you are describing needs to be investigated urgently probably with some sort of scan be it CT or MRI and there is no excuse for expecting you to suffer like this. You and they need to know the cause of this pain even if it is a terrible migraine, but even then that needs to be sorted and your INR checked.

Personally I don't like the sound of it all so PLEASE take someone with you and go back to A &E.

Please keep us informed as and when you can. Good Luck x


And... if your son, or another relative or close friend who is helping... wishes to do so, they can also be a member on here, and talk to us, if things are very difficult with your headache!. Mary F x


Ditto to all of the above. Good luck xxx


Hi Karen,

Having pain that is ignored is so awful. Having a condition which is not addressed properly is just not right. The advice above is really good and I am just writing to let you know we care and are sending loads of good and caring wishes your way. Please do let us know how things proceed.




I will do,the pain is getting worse with no let up, im fed up with taking pills its got to the point ive missed stuff, had angry customers ringing up as ive forgot to ring back, ive forgot birthdays loads of stuff. Im not confortable however I am, I snap at the kids more and cause fights with them, just because of this bloody pain, the doctor asked me what I want it to be? My reply was my life back, an ear infection has caused me to have pain on earth, qhwre giving birth feels like its a walk in the park compared to this. My house looks a tip most of the time as I want to sleep more than do housework. Washing up and cleaning feels like torture to do now :(


Hi had pain killers in to the back of my head Friday it lasted till I got the end of the doctors car park :(. Spent all day Saturday in bed as walking and moving hurt. Lost my sense of taste now and my right eye goes blurry. Pins and needles in my left leg is a pain. Why don't the NHS look up symtoms and find out what is going on.


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