Hemiplegic Migraines v Epilepsy - Conflicting diagnosis. Need help!

[ptangyangkipperbang]

Have had a rough couple of months. Had 3 episodes where I suffered paralysis in my right side (head to toe) and couldn't speak properly. They didn't last long and initially I was diagnosed with having suffered mini-strokes. However, because I had 3 in such a short time a consultant then decided that these unexplained episodes were epilepsy. My GP has just cast doubt on this diagnosis and suggested they were hemiplegic migraines. Although I didn't suffer from a particularly bad headache I did get the paralysis and stiff neck that can be associated with them.

I am hoping to see a consultant again but the waiting list is really long.

Has anyone any experience of hemiplegic migraines? What are your symptoms? Any help appreciated!

[ptangyangkipperbang]

Bump

[lou33]

no experience of the migraines you mention, but i would think a consultant was better qualified than a gp to make the diagnosis

was it a neurologist you saw? what tests did they do?

[3littlefrogs]

I used to get hemiplegic migraines when i was a teenager. They are horrid and very frightening. They improved as I got older.

The thing is that the some of the symptoms can be very similar to mini stroke and epilepsy

Did you get an "aura", such as visual disturbance, flashing lights or partial loss of vision before the attacks? Did the episode progress to severe headache and vomiting? Was each attack the same? Was there an identifiable trigger? Did you lose conciousness at any point. Did anybody observe the attacks, who could perhaps describe what happened?

Getting a really clear full history is very important, so writing down everything you can remember about each episode is a good idea. Think about any possible food or hormonal triggers too.

The neurologist should do a series of investigations to try and establish the diagnosis.

Poor you - it sounds miserable, and having the worry doesn't help.

Hope your GP can get you seen a bit sooner.

HTH

[Tiggiwinkle]

My Dh has suffered with these. They are, in his case, a type of migraine which is a mini- stroke and is associated with Hughes (Antiphospholipid) Syndrome. He has the visual aura, disturbance of speech, confusion, numbness in one side of his body, and a headache. He had suffered with them for years before other compications led to his diagnosis with Hughes Syndrome. He now take warfarin and no longer gets the headaches.
Do you have any other syptoms-Hughes is quite common but very under-diagnosed?

[pucca]

Oh where do i start

Dec 04 i had my first "attack"

Symptoms include..

Left side of face - numb/pins and needles
left arm
tongue
hand
neck.

I always had a warning first which was about 20 mins before an attack, warning was left side of vision disappearing.

Unable to talk / talking gibberish, i couldn't even say my own dd's name while an attack was happening.

No headache at all.

I was able to see a private neurologist, who first off sent me for an ultrasound of my carotid arteries (jugular vein in your neck) this ultrasound came back that i had a 50 - 60% narrowing of the artery, which was unheard of in a 24 YO. It got to the stage of almost booking my surgery with vascular surgeon, but luckily for me he chose for me to have a angiogram prior to this...this angiogram (also scanned my brain) came back giving me the all clear, no narrowing.

Therefore these attacks were put down to severe migraine, i was put on betablockers (propanonol) and haven't had an attack for 18 mths now.

I have suffered the more classic migraine from being about 15yo, so these attacks were really odd, but the neurologist must know what he is talking about so have just accepted it, the betablockers have also stopped my "classic" migraine so have worked wonders for me.

I don't really get the epilepsy connection, this was never mentioned to me as a possible cause, have heard of the hughes syndrome.

Hope you get to the bottom of this soon, i went through hell and back especially thinking i was going to have my neck cut open , the waiting is so hard.

[ptangyangkipperbang]

No real aura, just started with a numb foot until the paralysis spread through the whole of the right hand side of my body. Knew what I wanted to say but struggled with 'getting words from head to mouth'. I was totally aware of what was happening which some have said is unusual with epilepsy. Had a stiff neck and felt sick and tired afterwards but not a severe headache. Since then have suffered regularly from a numb face, again just the right side and throbbing headaches. Sometimes only my mouth and teeth are numb. Had a CT scan which didn't show anything. Thanks - hadn't heard of Hughes so will google!

[ptangyangkipperbang]

Pucca. Thank you so much - started thinking I was mad thinking I could have migraine without the headaches. GP assured me it was possible but I thought a headache would be a major component. I also had my neck scanned and no problem.

[pucca]

Glad to be of some help

I know when the neuro team put it down to migraines with me i thought, they don't know what the hell it is, so are using migraine as a scapegoat, but saying that the betablockers have worked a treat, and as they did the MRI of my brain too i know nothing too serious to worry about, have they offered you a MRI? if not ask for one.

Very frightening, so i do know how you feel, like i said the waiting is hell everything seems to take forever.

Good luck and let me know how you get on.

[ptangyangkipperbang]

Funny cos I thought the neurologist had decided it was epilepsy because he didn't know what it was!
I can't have an MRI scan because I had a childhood accident which meant I had some tubes and clips put in my head. An MRI scan would probably make my head explode

[3littlefrogs]

Yes - you can have painless migraine - it is a very peculiar thing, and there are lots of different types. Checking out the possibility of Hughes syndrome or similar condition would indeed be a good idea - you would need to be referred to a rheumatologist for investigation.

[ptangyangkipperbang]

Thank you so much everyone. Will have a mega-googling session. Forget talking about crocs - this kind of support is what mumsnet is all about

[pucca]

Have been thinking this over since last night ptangyangkipperbang (wow what a name lol).

The areas i did get the numbness i do still have a weakness in now, left arm, wrist, hand, also side of face, and every now and then they do tingle ever so slightly, not sure about that one but thought i would mention it.

I also have recently been waking in the morning to both hands and feet completely numb, it is odd as it is totally different to when you have laid on a arm funny or something, it doesn't go away by moving the affected area to me moving it brings it on more.... odd!

Anyway glad MN'ers have been some help to you, and keep us updated with how things go. xx

[ptangyangkipperbang]

The story continues...
Ended up back at GP on Friday because whole of right side of face and head had been numb for HOURS - almost constantly for about a day. Seems to be the norm now. In the past it might have just been my mouth and teeth but seems to be spreading! Literally like a line has been drawn down the middle of my face - fine on the left, partial numbness on the right. More headaches too.
GP now talking about nerve damage but admits she really hasn't got a clue. She's hoping to get me an emergency referral back to my consultant - hopefully for next week.
She did say the more she hears the less like epilepsy it sounds.