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MS, Epilepsy and Migraine

Hi All,

I’m not even sure if there is anyone around here that still remembers me as it’s been a couple of years since I posted. But hi to old and new friends anyway.

I have a question in regard to MS, Epilepsy and migraine - does anyone else around here have all 3 and what has your neuro said about a link between them or not!

Very brief background:
I had really bad migraine when I was young but when I gave up smoking it disappeared.
My first MS symptom was Optic Neuritis in 1989 but I went undiagnosed for years after this.
I had 3 seizures in a 4 year period from 1997 - 2001 and an EEG revealed activity indicative of epilepsy, my neuro’s diagnosis was ‘tendency to epilepsy’ but no treatment.
2003 diagnosed as having an ‘85% chance of developing MS’, yes my neuro’s exact words!
2008 diagnosed with ‘Mild MS’ after a relapse left me unable to walk for weeks, and then finally after a long process with RRMS
2010 had another seizure (A&E) but in retrospect my neuro called it ‘syncope’ (faint).
In this last 12 months I’ve been complaining of regular disconcerting visual aura (silent migraine my neuro and GP call it) which last between 20 and 45 minutes.
2 weeks ago I had a full blown tonic-clonic seizure and ended up in A&E, I had had 2 visual aura the day before, 1 that morning and 4 the day after, my MS has been pretty rotten in recent weeks too.

So you see my dilemma, I continue to be given the run around by my MS team and I will be seeking a second opinion. But anything you guys are willing to share would be great.

Pat x

Hi Pat

I’m not sure why the ms team are giving you the run around. The connection between seizures and MS is known about.

Is it a neurologist who specialises in MS that you see?

I don’t get siezures but do suffer with chronic headache/migraines, which I take Topiramate for. It is the migraines that led to my diagnosis of MS.

Good luck

X

1 Like

I do agree with Carole that MS is known to be associated with a higher incidence of epilepsy than in the general population, although it’s still not very common.

I’ve no idea whether it’s relevant, but I’ve had just a single migraine in my life - in my 30s - at least ten years before being diagnosed. I had aura only - no headache. Other members of the family do have migraines, so luckily, I recognised what it was from their descriptions, and wasn’t too panicked after the first minute or two.

I thought it strange to start in your 30s, after never having had one before, and wondered if it was to become a regular thing - although it never did.

Knowing that it was in the family, I never bothered going to the doctor’s. With hindsight, I’m relieved I didn’t, because I have a feeling visits to the doctor about anything remotely neurological would have voided my insurance.

Ignoring things is certainly not always the best course, but I think I was very lucky, with this one, that I didn’t rush to the doctor’s, and just forgot and carried on with my life.

I suppose I’ll never know if it was related to very early brain changes that would go on to be diagnosed with MS, or if it was pure coincidence.

Strangely, I’ve never had another, even though I would have quite liked to, as in my case, it was both painless and very beautiful.

I’ve never been able to recreate the circumstances that caused it. I know it was a Friday, and that I’d been working very hard that day (a twice-yearly deadline) and not had very much to eat.

At teatime, I was still hard at work (I worked from home), and decided to have a coffee, and then a glass of wine. Just then a delivery man called, and as I stepped forward to sign for my parcel, I happened to look into the headlamps of his van, which he’d left on while he came to the door.

When I came back indoors, the after-image from the lamps, instead of gradually fading, became bigger and bigger, and more elaborate, and eventually filled my whole field of vision with shimmering water, turrets, chessboard effects, and so on. After initially being scared, I grew fascinated, when I realised nothing hurt, and I was otherwise able to function as normal. I was able to Google “migraine aura”, for example - and check if it fitted. I was still able to read, as the visual distortions were somehow superimposed on everything, but shimmering and transparent, so I could see underneath.

Who knows if this was a first sign something was wrong? If nobody else in the family had ever had them, I might have been more concerned, but as I could tell at once that it was just as my mother and sister had often described, I thought: “Oh well, looks like I’ve got the same! Nothing to be scared of.”

Tina

x

Hi Pat

i also have ms and epilepsy and migraines which the latter I have on a daily basis.

Hi Tina

It was me Noreen that answered the question, not Carole. I’m only telling you because of last time.

Personally, I don’t care if yah call me tom dick our harry-just covering mi back Lol ​

Shucks! I can’t do smilies on my tablet.

X

Apologies Noreen,

It’s a bit worrying that I seem to be more easily confused lately. I didn’t mention it to the Neuro - wonder if I should have?

Then again, I didn’t get a very good night, and am a bit heavily drugged up, so don’t know if it’s me or the pills really.

Sorry again.

T.

xx

A combination of heavy medication and poor sleep can cause confusion. I would mention it though if it continues to be a problem.

I am withdrawing from a drug at the moment, under the guidance of my gp to check if it’s causing or adding to the problem I’m having with my short-term memory loss. I’m keeping my fingers crossed but so far no improvement.

My apologies Pat for going off subject.

X

Thank you so much for chipping in and telling me your stories, it always helps to know your not alone.

thanks for the info Noreen, I have seen research on the relationship between epilepsy and MS but my neuro is not an MS specialist and he really doesn’t get it! Since I wrote this I have seen my GP this morning and she is sending me for another opinion to a large neurological centre. But please don’t worry about going off the subject it’s all fascinating :slight_smile:

Tina your story is fascinating thank you for sharing, just to clarify the migraine bit when I was young (in my 20s) I had very painful migraine which was definitely related to smoking, but no aura at all, so I gave up smoking at 30 and it disappeared. These migraine aura look exactly like Scintillating Scotoma (there are picture and videos on the web if you google it).

BTW. I am 60 and I have never had anything like this until this last year even though I was 33 when I had my first bout of Optic Neuritis.

My neuro said when the aura first happened last year it’s migraine go and look at the Migraine Trust web site, which I did and on there it says that Migraine aura with no pain appearing at 60+ needs checking out as it can mean much more than simple migraine. So the TIA clinic checked me out and said it’s neurological go back to your neuro. The neuro said ‘go and see your GP and get some cardio-vascular tests done’. Which I did and they were clear but the aura continued.

Michelle Im fascinated has your neuro told you that the 3 are linked?

thanks again all. X

Hi yesterday after having my first episode in 2007 i was diagnosed with TEA. Transient Eplipetic Amnesia. I have had several episodes etc, and one bad one in october put me in hospital and another smaller one a week last Monday. I have EEG etc but came back satisfactory.

However, yesterday with all the clinical findings and things that have happened over the last years he gave me the diagnosis. Its very rare rarer then MS lol. It comes on usually in the sixties (age). Its scary and i hate it.

Whilst i was waiting to see him i was chatting with a women in a wheelchair the same as me she was about 38 i suppose with MS having a relapse, and told me she too suffered with epilepsy and several of her friends with MS do too.

Even my neuro said there was a link…but not so much with TEA which is a little understood phenomenon.

xxxxx

Hi Goldengirl63,

thank you for sharing that with me I really appreciate it. All the replies on here have given me the confidence to keep pursuing answers even after all these years.

pat xx