Monday, 20 December 2010

Hurrah. A non-diagnosis

'So, doctor,if you were to sum up the last hour for me, to give me a one-line diagnosis that I could give my husband, what would you say the diagnosis is?'
At this point in time I have been awake for more than 24 hours, I've had a one-hour EEG and we have been shooting a lot of shit, so to speak. I need something my brain can get around....

'Well....I have no idea....'

Ok...that sounds like it was a bit of a waste of my life, so maybe I should really start at, well, if not the beginning, somewhere a tad closer to it.

As you will know, I had an 'incident' in the US last month. MRI scan and consultation in the US was followed by a visit to my migraine doctor. He was worried about epilepsy due to certain features of the 'incident', hence my appearance at the neurologist this morning.

The upshot is: I had a seizure but I don't have epilepsy. The incident that I had was very odd in that it had lots of different features of lots of different things, but no overall 'thing' won out. As the doctor said, and I am sure fellow sufferers will agree, migraine brains are odd. They behave differently from other brains. It is possible that I started out with a period of hypo-perfusion in the brain due to low blood pressure, it morphed into a seizure and ended up as a migraine.

Seizures in the brain can happen when the seizure-threshold is reached.In a non-epileptic brain This is usually due to a combination of things: lack of sleep; illness; alcohol; stress; fever; antibiotics. When the seizure happened I was already exhausted- we'd had an amazing, but utterly exhausting, week in Costa Rica. I was already on my knees due to 3 months very bad sleep. I arrived in the US with the mother and father of all sinus infections. At the time of the seizure I was on my third lot of antibiotics. I had drunk a little more than usual in Costa Rica but at the time of the seizure hadn't had anything alcoholic to drink for more than a week due to the particular antibiotic, but when you look at all the other factors it doesn't seem implausible that the threshold was breached.

In addition, the EEG showed some 'peculiarities' which are normally associated with elderly men (WTF???). It isn't unheard of in women or younger men, but if the doctor hadn't got my details he would have assumed the EEG was an elderly man's. Oh well.

. So, plan of attack. Step 1: Do everything I can to lower my risk factors. If I have a fever, take paracetamol or ibuprofen, If I am ill, sleep a lot (no need to tell me twice). Also, continue to work on sorting sleep issue (perhaps move onto Seroquel instead of melatonin). I can continue to drink in moderation. Step two: medication. Can you guess which anti-seizure medication he recommended? Yep, you got it. Topomax. I told him that I regarded Topomax as the work of the Devil and suggested he tried other options. Said options were not to make me: (more) stupid than the migraines were already making me; fat(er) than I am now; ugly. I then gave him the list of medications that I had downloaded from UK epilepsy charity and he went through them all, disregarding them either because they caused one of the above or they would not work in my case. That left carbamazapine.

I will be starting on a very low dose and titrating up to a low dose. There are some side effects but these are generally associated with high doses, which I won't need. Unlike some of the other medications, these side-effects resolve if the dose is reduced or the medication is stopped. I need to go back for another EEG in February when I will be on the full dose. He will also check the blood level of the drug and do a liver-function test. I am sincerely hoping that there won't be any issues there.

Regarding my safety and that of others', I am still not allowed to drive. In my situation if I am seizure-free for two months I can drive again. I am not allowed to go swimming. Very high risk of drowning....

To be honest, it is better than I hoped for. I was worried that even though it would (hopefully) not be epilepsy, that I would be left in a limbo, not knowing what had caused it, no treatment, just waiting for another seizure to happen along. As it is, although the doctor cannot but a 'label' on it, everything he says makes sense.

I can breathe a bit more easily again.


  1. Sorry that you're going through this. I will say that, with my own low-blood-pressure issues, I've had incidents which closely resemble seizures - where I'm on the floor, twitching, as no blood's getting to my brain. If you're having low blood pressure due to low blood volume (e.g., dehydration), it's something to think about.

  2. Well... it sounds as if you were listened to and taken seriously, and that you were well-prepared when you went in - and all of that is very good. The advice sounds wise. Some of us are at a high risk of drowning when swimming even without migrainous brains! Have a relaxing holiday.