Migrainous stroke may be rare, but I have suffered not one but two...

[Travipop]

This is my first proper post. I am a 46 year old female, slim, and used to be fit and healthy (I was diagnosed with CFS/ME in 2009 which is a real pain in the proverbial). I am married and have a son who's 10. I have struggled over the last year and a half to come to terms with suffering two strokes - one of them at least has been diagnosed as migrainous, but the assumption is that both are migrainous. The persistent aura I am left with is a constant reminder of the most recent stroke. The MRI scans show 2 separate areas of brain damage and my Neurologists believe these strokes would not have happened at the same time. I was initially dumbfounded to learn that strokes could be caused by migraines. Now I am more frustrated that having done every other test possible to eliminate other stroke causes, I am left with a diagnosis that is apparently so rare, very little research has been done around re-occurrence. It seems the theory is 'keep the migraines at bay, lessen the chances of further strokes'. But you know what? I've had 2 strokes already!! So no one's convinced me that I wont have another! So I'm scared. Very scared. Mostly that the next one - should it come will be much more severe. But to all intents and purposes my Neurologists are done with me. My migraines are 'sort of' under control. They are better than they were. But for example I still woke up in two nights ago with a horrendous attack of vertigo which persisted for 36 hours. It got better, but most of yesterday I stumbled about everywhere and just sounded drunk every time I spoke. So, my last resort is to make an appointment at the NMC. However I'm not hopeful. I doubt they will have dealt much with stroke patients, but hey who knows. I just know I'm exhausted with it all and somewhat defeated. When the 'experts' are at a loss it all gets a bit hopeless. But I would appreciate any of my fellow sufferers thoughts and comments. I cried the first time I came across this site. All too many similar stories. x

[MaryF]

Hi there you need to look into Hughes Syndrome, urgently, it often comes with Sjgroens and also Hypothyrodism, also frequently put down as ME and Fibro. Unfortnately neurolgoists frequently miss APS (Hughs Syndrome) - although I did hear that The National Migraine Centre and indeed Professor Hughes were doing a study to see the percentage of patients who have migraines with strokes, who often turn out to have this. Also you need to be aware as well as Hughes Syndrome of Seronegative Hughes Syndrome. Here are two articles. St Thomas' have the leading edge in the UK regarding this disease, and also you can privately refer to London Bridge yourself.

telegraph.co.uk/health/4400...

ard.bmj.com/content/62/12/1... this paper very important as some patients like myself have TIA's and also have had actual blood clots but still fail the standard tests. Good luck and let me know by private message if you need any further information. Mary F x

[Travipop in reply to MaryF]

Thanks MaryF - they did the tests for Hughes I think? Is that also known as 'sticky blood'? It's one of the first things they did - and I'm sure they repeated it. Also I think last year when I was researching things wildly I looked into myself because I do believe the ME is connected - again disputed by Neuros - but I'm sure all the tests came back negative. But I'll look at the links you've suggested. And I know how frightening TIA's are. I had dozens of them leading up to the main stroke and indeed after it. Thanks again. x

[MaryF in reply to Travipop]

Yes well as Professor Hughes says himself... it is the tests failing the patients rather than the patients failing the tests, see above paper regarding sero negative hughes.. I have this. London Bridge sort out a lot of patients with this, you can keep costs down by doing your tests before you go along, so as just to incur the appointment fee, I did that to make the NHS behave better with myself! I also have Sjogrens, Lupus, Hypothryoidism and Psoriatic Arthropathy... not uncommon to have several things and the thryoid tests are not that great either; youtube.com/watch?v=lyc8N_m...(Not working as expected?)

All the best to you: youtube.com/watch?v=lyc8N_m...(Not working as expected?)

and also a recent blog from Professor Hughes re: Sernegativity: from Hughes Syndrome Foundation: via patient forum:

Patient of the Month

"Sero-negative APS"

Mrs L.H., aged 37, had a long history suggestive of Hughes syndrome. As a teenager she had been treated with steroids for thrombocytopenia (low platelets). She also had a long history of migrainous headaches, sometimes as frequently as once a week. She had had three miscarriages and had not had any successful pregnancies. At the age of 25 she developed a leg clot (DVT) for which she was treated for six months on warfarin. Other features in her history included mild mitral valve leakage and a number of attacks of balance disturbance ("Meniere's disease"). In her mid-30s the migraine attacks became more frequent and severe. Finally, she suffered a couple of 'mini-strokes' ('TIAs'). At this time, investigations showed a number of 'focal' abnormalities ('small dots') on her MRI brain scan. Blood tests were negative. She had started taking aspirin, but with little success.

Diagnosis?

For me, despite the negative aPL tests, the clinical picture points to Hughes syndrome: the low platelets, the migraine, the three miscarriages, the mitral valve disease (possibly) and the combination of both venous (DVT) and arterial (strokes) thrombosis.

Treatment?

Warfarin. The presence of lesions on brain scan and the history of TIAs in a 35 year old makes the decision easy.

She was started on warfarin. The result has, in Mrs L.H.'s opinion, been 'life-changing'. Headaches gone, energy levels hugely improved. No more "Meniere's".

What is this patient teaching us?

Since we introduced the concept of 'sero-negative APS' back in 2003 there has been much debate about its significance.

As the years have passed, I have seen more and more patients like Mrs L.H. whose clinical diagnosis fits Hughes syndrome, but in whom the lab tests (aPL) are negative.

For me, there are three possible explanations for the picture:

Firstly, of course, the diagnosis could be wrong.

Secondly, it is conceivable that the (aPL) tests, previously positive, had become negative with the passage of time. (It does sometimes happen).

Thirdly, and in my view the most likely, is that our current tests are short of perfect.

Three questions:

1) Does it matter?

2) Any other clues?

3) How to treat?

1) Of course it matters. Sadly , I see a number of 'sero-negative' patients where the clinical picture isn't fully believed, and where treatment is less than optimal.

2) Any other clues? Hughes syndrome is one of the so-called auto-immune diseases, and a family history is often significant. Mrs L.H.'s family history was remarkable - four sisters with migraine, miscarriages and thrombosis - one of whom had a diagnosis of 'atypical multiple sclerosis' and a second with underactive thyroid; mother and aunt with low thyroid and an aunt with Hughes syndrome - and positive aPL tests (also my patient).

3) Treatment? Despite the negative tests, I treat the patients the same way as I would those with positive tests - and the results are often as gratifying as those seen in many 'sero-positive' cases of Hughes syndrome.

Mary F x

[Travipop]

I've just read those articles - well skimmed them really quickly. Fascinating, and yes I was aware of this - but my memory is appalling. I retain nothing, I recently wrote to my Neurologists asking if the brain damage could affect my memory because I've had serious suggestions that I be tested for dementia! But I now do recall both Rheumatology and Haematology did various tests for the APS and Lupus anti-coagulant but all were negative. And I was told that even if they were positive all they would do was put me on Aspirin and I'm on that anyway! I need to understand more about the sero negative - that's not clear other than that the tests can be negative but you can still have APS? I'll read up on all this. Just about to read your last post. Thanks again. Travipop x

[MaryF in reply to Travipop]

That is very incorrect advice, alongside aspirin with that history you would be advised to take anticoagulants, which is why I mentioned London Bridge, many of us have had to go there to get help with the team there. Mary F x

[bugdootle]

Hi, came across your post doing a web seach for multple strokes in young people. Your story was like living mine.. I had four strokes over three days due to migraine and an underlying vascular condition. I have the permanent aura from the first stroke as well. I m not sure why it seems doctors do t know how to handle strokes as well in young people. I've been on blood thinner two years and earlier this year had my fifth stroke again attributed to migraine and vasclar disease. I eat heart healthy diet, exercise, and attempt to be stress free but the not knowing causes more stress than anything. I was 34 and healthy when my fisrt stroke hit with the migraine aura that never left and the worst headache imaginable. And now at 36 I take even better care of myself but the exhaustion and fear can be so overwhelming sometimes.

[Travipop]

Hi - well in a way it's a relief to know that I'm not the only one out here! But I am sorry that you have had multiple strokes. I've only had two and I find that distressing enough. But my biggest fear is that because there is no clear answer as to what caused them, no matter what we do there is little guarantee of preventing further strokes. I have had further consultations with a 'Hughes Syndrome' consultant in Edinburgh who is convinced that that is not the problem for me. There appears to be very little research as to how these strokes occur. Although they are called migrainous I have asked my neurologist if they would be better named as brain attacks of some sort as that might allow more research into what causes them. I have hemiplegic migraine which for me is everything BUT the headache at times - vertigo, fractured vision, numbness...etc etc. And to be honest the meds I'm on - topiramate and propanalol - keep them at bay - but my fear is the meds simply mask the symptoms and I may still end up with more strokes..Can I ask, is it definitely the migraines that have led to your strokes? Does the vascular disease play it part in any way?Also have the further strokes been in the same area of the brain and have they left any other permanent damage? People still presume I'm talking about TIA's when I tell them I've had strokes and I have to explain that I have had a 2 full strokes resulting in dead brain tissue. I think because I appear to be absolutely normal (other than the aura) they assume I'm exaggerating, which is beyond annoying. I know the fear of not knowing is exhausting, but keep strong. Fear just eats away at us. x

[Evarm in reply to Travipop]

Have just come across this site and if nothing else it is reassuring to know that others are out there with the same fears and frustrations. But why are we allowed to be left in this state....as has been expressed, the stress sometimes is so huge that panic attacks and anxiety attacks have also become part of my life. I suffered at TIA in 2011 at the age of 42.....I had had a stressful year, a miscarriage and a business situation which resulted in me being sued by my customer. Initially in hospital when I arrived in A&E all they did was wait until I was cognitive and sent me home with a couple of aspirin! After a day I began to suffer tingling down my right side, so I went back to hospital where they kept me in and finally did a CT and then an MRI...the results of which took 2 weeks to be relayed to me by a neurologist! I have suffered migraines all my life and after exhaustive tests over a year, no reason for the TIA could be found other than 'well it must just be migraine related' and that was it...goodbye. I take Clopidogrel but recently have been placed on Propanol to help control the panic attacks....but neither stop the migraines....I constantly live with the fear that one if these could cause another stroke. It's shocking the small amount of time that's expended by professionals on migraines and strokes in the young and seemingly healthy....it's like they think, oh well, they'll get over it. Best wishes to all of you in similar position and good luck for the future x

[Katielong in reply to Travipop]

Hi, so I was the one from above who had had five strokes. Soo sorry that it's a year or two later and I am just replying my memory sucks for obvious reasons and I came back upon this on a Google search. Lol, at the the Internet never forgets. I hope you are well. I 100% agree with your frustration when people assume TIA over stroke. I find myself correcting people who felt the need to correct me on something they had no knowledge of- my health! It's usually along the lines of " I've had 5 strokes," "oh you mean you've had TIAs, mini strokes," "no, I mean 5 different parts of my brain are dead." But yeah, on my good days I fake normal really well. I've learned to compensate the loss of eyesight but it seems to have gotten a lot worse with each really bad migraine. Which leads me back to your original question for me, the doctors do think my strokes are caused by the underlying vascular condition- Fibromuscular Dysplasia, however, because two happened in the occipital lobe and one in the thalamus and all during massive migraine attacks they don't feel comfortable ruling out the migraines and the FMD causing a sick little perfect storm. FMD may cause one stroke, but five is really very excessive. And I'm with you with the fear, the doctors have told me when I get a bad migraine that doesn't seem right go ahead and go to the ER. Yay. But I have definitely learned my triggers!! Oh man, I know everything to stay away from now!! I really hope you are well