When Migraines are not Migraines but ... - National Migraine...

National Migraine Centre
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When Migraines are not Migraines but Epilepsy


My Neurologist seems to think that I may have a form of Epilepsy which is hard to pinpoint since there are so many kinds of Epilepsy. I am still having severe migraines everyday and up to 400mg of Topamax Brand per day in addition to sumitriptan almost daily. I am now biting my tongue, clinching my teeth while tying to sleep and drooling so bad that I have to change shirts during the night. I blackout several times per day, still tremble and shake, stutter and the go into lala land where I do not know where or who I am. This all happens daily. Smells trigger these reactions as well as stress especially. I cannot stand the smell of certain foods, perfumes, chemicals because they will set off an attack. I am so sensitive to light, noise, arguing because these too also set off attacks. I have at least 5 attacks everyday and this is with watching my surroundings. This is in addition to the daily migraines to the point that life is not worth living anymore because I am just miserable. I have no money to pay this neuro guy so my mother is paying him and has been doing a lot of research on Epilepsy and the critical thing is I had a small brain stoke 2 years when this all started and the hospital Neuroligist said I had cluster headaches and said go see your own Neurologist. He didn't know how to diagnose it.

12 Replies

Hello, your post is very interesting, have you been tested for Hughes Syndrome/APS, otherwise known as Sticky Blood and full name Antiphospholipid Syndrome?

, Unfortunately this is frequently missed by Neurologist with dangerous consequences. Often other members of the family will have other autoimmune diseases including Thyroid, but not always, and women some times have multiple miscarriages. Also relatives perhaps having heart attacks or strokes at an early age.

The type of migraines which go with this documented disease respond to Aspirin and Anticoagulants. There is a list of NHS specialists across the UK who understand this condition, which I can give you if you tell me where you are located. The three blood tests are here, the second one is not a Lupus test, just an old fashioned name for the blood tests.

The tests should be done in a hospital as the samples taken are time sensitive:

1. Anticardiolipin Antibodies (aCL)


Sometimes referred to as Antiphospholipid

Positive in 80% of cases

Higher Levels = Higher risk of Thrombosis

2. Lupus Anticoagulant (LA) **


Positive in 30-40% of cases

Cannot be used if patient is on warfarin

3.. Beta2GP1


This is a newer test, not routinely performed, but occasionally positivite when the above two tests are negative

I administrate a forum on this platform for Sticky Blood-Hughes Syndrome, lots of our members are on that forum as well as this one.

Come back to me if I can help further.


Thank you for your post which is very interesting. Thank you and I will mention these blood tests to my Dr. Unfortunately I live in the U.S. and finding a Dr. here may be harder than it sounds. I appreciate your post and understanding and I do appreciate any input I can get regarding my situation. Regards.

Phillip Fishing

On my forum, we have many from the USA it is harder to find the right specialist but there are a few. MaryF

in reply to MaryF

Hi Mary

Do you think Hughes syndrome can cause cluster headache or migraine? It seems it does, it is mentioned here: pmj.bmj.com/content/79/928/81

I do not know much about APS but I don't know why NHS does not mention headache at all - nhs.uk/Conditions/Hughes-sy...



in reply to troy04

It does under the signs and symptoms bit! MaryF

in reply to MaryF

Ahh I see now, well spotted !

I will certainly check this option out. Thanks so much.

When you say you blackout do you know exactly what happens, I mean has anyone ever seen it happen that can tell you? do you simply pass out or is this when the twitching type movements occur? Do you know what part of the brain was affected by your stroke? Was it an actual stroke or what they call a transient ischemic attack (often called a mini-stoke)? Have you had any recent diagnostic tests done such as an MRI or an EEG?

After one of these episodes are you confused and or drowsy? or is the confusion not directly related to the blackouts? What's your family history like, is anyone else epileptic or does anyone else suffer from migraines? there is increasing research to suggest that the two are related and do have a genetic component.

Sorry for all the questions, I'm a nurse its just what I do lol. I don't work in neurology but do get quite a lot of seizure patients passing through my ward area so although I am most certainly not an expert I have a working knowledge so to speak.

I do not know what happens, a family member will find me wandering in the kitchen or in the halls, sometimes I am on the floor and they say my name and I come to. This is usually in the wee morning hours and coincidentally someone finds me. I have had them during the day, I will already have a migraine which I keep 24/7 and then the trembling and shaking begin and the stuttering. My eyes start to swell or bulge. If I don't sit down quickly I will fall. I have my family worried to death because no one can classify me (especially with no insurance in the US) I had a CT scan and a MRI 2 yrs ago and the hospital Neurologist classified it as CLuster headaches but my symptoms have only gotten worse since then and knowing I had no insurance he told me to go find one. Great Medical system here, I have applied for Medicaid at least 6 times and been denied every time with no reason given. How can i find out a true picture of what is wrong with me if I can't get a doctor and when I go the ER they tell me to go to the Health Dept. Been there and done that, They do not have specialists to send me to. My mother has paid for all MRI;s to be done on a cash basis but I don't have a Neurologist to read it. Everything is a catch 22, The hospital also said I had a brain stoke and yet classified it as cluster headaches. Either he is crazy or I am. Wouldn't a stroke do something to the brain. This is when the massive headaches got worse, the trembling and shaking on one side and the stuttering began. Also when my eyes started bulging--- when I have the attacks. I am on Topamax 400 MG and Sumitripan, I understand that there are a 1000 epilepic/seizure meds out there.

I hope your ok, I also have chronic migraines I hav 2-3 days a week I will have a migraine. I have temporal lobe epilepsy and am also being tested to see if I have a type of vasculitis and all this happens to me out the blue 2 years ago and I think their all connected too, am on lamotorgine for the epilepsy and nothing works on my migraines my nurlogist is wanting me to try a injection a nerve block I think it is (I was pregnant though and never had one migraine in them 10 weeks, I lost the baby, I did find that weird though how my migraines went and goin to mention it at my next app) I also second to get tested for something called “sticky blood” I got blood tests done too see if I did Have it it as my migraines wer so bad they mimicked a mini stroke, fortunately I never but you also have the symptoms of it. Hope your well x

Do get tested for Hughes Syndrome/APS, familes often have other members with autoimmune conditions including thyroid, also history of clots at an early age plus if female, miscarriages, here is the relevant charity, AND on these pages are the three blood tests required. ghic.world/

Frequently missed by the medical profession, including unfortunately neurologists, also on that charity website a list of medical consultants who understand the condition, also on the forum I administrate on this platform, we have a list of additional UK specialists.


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