Hi there, don't know who else to ask. In Feb this year I had a stroke, completely out of the blue..or so I thought. After teaching myself to read again as well as lots of other silly everyday things like where do I keep the cups in the kitchen and how to use the microwave, how to ride my horse, I accepted my "new me". On my hospital discharge the Dr told me it wasn't a stroke, it was a migraine.
I was rushed in to resus and thrombolysed, ended up on the extreme end of the stroke ward with 24 hour care...and it WAS A MIGRAINE!!! Still life moves on and I got back to life or the new version
Fast forward 7 months.. I've just returned to work after spending 5 day unconscious in bed after having another migraine. NONE of the meds I have been given work, the Propranol type stuff turns me into a zombie with extreme nightmares, and the sumitran (or whatever that pointless tablet is called -We call in sum of nun) is useless. The pain is beyond anything.. the pressure put on my family is immense, I've got to work.
How the hell do you deal with it especially whilst most people refer to it as "just a headache"?
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gladys45
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Hi, it is terribly important that you are tested for Hughes Syndrome/APS, you GP can do the tests but do them at the hospital! As the samples taken are time sensitive, this is an autoimmune disease which improves considerably with a) the right medications, and b) the right specialist with a working knowledge of the disease. Let me know where you are located and I will give you a list, here are the blood tests,
Neurologists do at times dismiss this condition with dangerous results!
Yes, I do, please don't be confused about the name of the first test, it is not a test for Lupus, it is for Hughes Syndrome/APS:
Specialists in your area
Finding a specialist
Antiphospholipid syndrome can cross a number of medical disciplines and the type of specialist you see will depend on your symptoms; for example, you may see a neurologist if you have epilepsy or an obstetrician if you are pregnant, but usually, the type of doctor who specialises in APS is either a haematologist or rheumatologist.
Finding expert medical care in your local area can sometimes be difficult, and one of the most common queries our charity receives is from patients looking for APS specialists who can treat them.
Thanks to other patients supplying and sharing their information, we are able to provide this unique UK directory - just click on your region below to see the specialists in your area. If you think we have missed a doctor out, do let us know. Please remember that all referrals must be made through your GP.
North East Specialists
NHS Specialists
Dr Bridget Griffiths
Consultant Rheumatologist
Department of Rheumatology
Freeman Hospital
Freeman Road, High Heaton
Newcastle-upon-Tyne, NE7 7DN
Telephone: 0191 213 7978
Dr Richard Reece
Consultant Rheumatologist
Department of Rheumatology
Darlington Memorial Hospital
Hollyhurst Road, Darlington
County Durham, DL3 6HX
Telephone: 01325 380100
SYMPTOMS: In pregnancy, APS is the most common, potentially treatable cause of recurrent miscarriage, and is also associated with other complications such as pre-eclampsia, low weight babies and stillbirth.
Some people are affected by symptoms more than others while others simply have the antiphospholipid antibodies (aPL) in their blood but do not develop any blood clots, experience pregnancy complications or display any symptoms at all. As of yet, we simply don’t know the reason why these anomalies exist because so much research still needs to be carried out.
The typical low-grade symptoms of APS are:
headache and migraine
memory problems
dizziness and balance difficulties
visual disturbances
blotchy skin (livedo reticularis)
arthralgia
fatigue
The common acute events caused by APS are:
thrombosis – DVTs
strokes and mini-strokes (TIAs - Transient Ischaemic Attacks)
At the moment all information is on the forum, pinned posts on the right hand side, however in the future we may have a website, we are fully supported by a number of medical professionals, join our forum as well as staying on this one. MaryF
Hi birdie I had a consult which lasted 45 mins, wrote e a list (massive list) of all triptans, prevention meds and pain relief (including oral morph)
I'm also getting flushes and hormone migraine ( I get 3 types, aura, jaw migraines due to no cartilage and locked jaw and hormone migraines)
After a full history she made me a cream to rub anywhere that hurts, honest to gawd!! I always thought it was all hocus pocus but to my amazement it's working!!😱.
I hardly use any cream , there's no smell, nothing menthol or mint, it soaks right in and works!!
No pain meds since Friday.
I manage my jaw ones with ice packs and that works in a couple of hours but their putting 25units of botox in each messeter (think thats how you spell it lol ) jaw muscles.
Honestly wish i looked into this 3yrs ago!!
Might still need a jaw joint replacement in the future but OMG no persistent headache is good for now 😆
Hi Gladys45, I went through a similar situation 2 years ago. I was eventually diagnosed with hemiplegic migraine . I now take Topiromate which seems to help although I have never had a day without a headache since the first attack. I had to take medical retirement from a job I loved. The only relief I get from the pain is when I go for my daily swim and a walk in fresh air.
I understand how you are feeling and it is not 'just a headache'. It is a life changing experience that is hard to come to terms with. I hope you find ways of dealing with the pain. It will take time and life style changes and trying new things to find what is best for you.
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