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.

Swissness

Decorating my front door for the seasons makes me feel Swiss-ish. It isn't just winter decorations, spring/easter ones are popular, too. I bought this after a failed attempt to have coffee with some ex-pats this morning. You know that un-loved feeling you get when you turn up for something and no-one else does? Well, I didn't feel like that, since I haven't been for months, but I was a bit naffed off that I yanked myself out of bed at 7.45 this morning.

After a couple of cups of coffee I headed off to the Apotheke (pharmacy). They have a good system here- my doctor can write a repeat prescription which is good for a set period of time, and I just go back to the pharmacy to pick it up, no need to contact the doctor's surgery first. Once again, my German was trotted out. I bet the guy though 'Oh, not again!' when, in response to his 'Do you speak English?', I replied that I must try German first. There then followed a long and complicated discussion, in which I came to appreciate just how much of what we say is actually padding. Very long story short...after delving into his computer he agreed with me that the doctor had actually prescribed '1 to 2 tablets' of Melatonin. His first thought was that this could not possibly be correct and he looked really worried when I told him I had been taking two tablets at night since last Friday. Melatonin is the latest in recent attempts to sort my sleeping out. It occurs naturally in the body and is what sends us to sleep. You should have seen Dr L's face when I told him that the doctor in the US had offered me Ambien or benzodiazepines!! 'Oh, please don't do that!' he blurted out. Not to worry, a tranquiliser addiction is not what I need right now, so I had turned it down. In the UK it is very hard to get benzodiazapines on prescription. They are very useful in certain circumstances but their use is carefully monitored. So far the Melatonin seems to be helping.

We are supposed to be heading back to the UK on Friday to do our christmas shopping. Not sure if that'll be happening, given the weather in the UK at the moment. In the meantime, the snow looks very pretty from the comfort of my living room....I'm off to curl up on the sofa and read. Tchüüs.

new migraine treatment

So....I am giving a the beta blockers one final chance in the guise of nebivololum. If I don't have any nightmares during the first few days I have to keep using it for a month....anxious, anxious.....

I have been given two different triptans to try in case of an acute attack. Naramig, which I've had before about 5 years ago and a completely new one Almogran (almotriptan). There were more mutterings about Topomax but I just told them point blank that I was not prepared to take it.

migraine misery, Genoa (not necessarily linked ;0)

I'm back on the beta blockers, not that this is helping any right now, I have had a very miserable few days. I am also having rather unpleasant dreams again and am very worried about the sleepwalking and what I might do whilst in the grip of a nightmare. Fun times. I managed to get an appointment at the migraine clinic tomorrow- it's a long journey by public transport and I am not looking forward to making it.

On the positive side, at least I am miserable in Switzerland ;0)

OUr recent trip to Genoa was.....interesting. The old part of the city looks filthy, even though there is no rubbish lying around. The (almost constant) smell of urine doesn't help. The food is bloody awful. Yep, we were eating where the locals ate and all I can say is that they must have pretty low standards! The people were very friendly though and were very tolerant of my lack of Italian - and we found what was Probably The Best Gelato In The World.

Number Guy has a weakness for aquaria (is that the correct plural???) so a visit to the Genoese one was a must.
It ticked lots of the right boxes, but we do think that their humming bird display was a bit, erm, unworthy of the extra admission fee.

Right, I'm off to remind myself that there are worse things in the world than chronic and acute migraine - wish me luck!

more migraine stuff

just want to document the latest changes so that I have it written somewhere.

Went to see a neurologist who seems to know what she is on about this time.I am a but anxious because I am stopping the metroprolol due to sleep-walking issues (Number Guy found me trying to get the French doors in our bedroom open while we were in Genoa. We were four stories up....)

So - trying magnseium again, starting at 5 mmol and working up

Vitamin B2- starting on 200mg working up to4oomg (may have an allergic reaction, nice)

INcrease the medication I take for oesophogeal dismotility as it apparently works for migraines. so up to 100mg

Tale Zomig when I get face pain. Dr thinks I wait too long. I don't. I know the difference between the 'take other painkillers' and 'this is gonna blow my head off' so I am a bit anxious that I'll be taking Zomig all the time

Take MAxalt (same type of drug as Zomig) if the Zomig doesn't work. THis is a bit of a relief as although the times when the Zomig doesn't work are few and far between, when it doesn't the pain is indescribeable.

HAve EEG and MRI scan to check all really is ok, but there is no reason to think it isn't

Whew, I feel tired just typing that lot....

More about Genoa later, methinks.

Good migraine news

Initially, I was a bit concerned about the efficacy of
Metoprolol in the treatment of my migraines. I am happy to report that things are now going much better than I had anticipated.

The very positive thing about this drug is that it is having a dramatic effect on the chronic face pain that I have with migraine. This can be low-medium-hight intensity and results in having to take painkillers on an a,most daily basis (I am aware of rebound pain, and for the most part this isn't a problem). I am now having more days when I don't need any painkillers at all than days when I might need one of two doese. This is great. The downside is that weightgain is still an issue with this drug. Darn it! The added problem is that my pulse won't go above about 110, which makes exercise on my cross-trainer difficult. But I am not giving in and in addition I am seeing a nutritionist to help me get back into a good routine of eating, both in terms of what I eat and when I eat it. I am feeling fairly positive about this.

What I am not feeling positive about is my BMI of 28.1. For someone who was skinny all their life, this is an unhappy situation. I am going to calculate my BMI at the start of every month and hopefully it will be on a downwards trajectory.

Migraines

I went to see my Augenartzt (eye doctor) yesterday. He measured the pressure in my eyes, which was a bit on the high side. By the time he used his 'Gameboy' as he called it, to perform a calculation once he had plugged in eye pressure plus corneal thickness, all was well. Pressures normal, visual field great, optic nerve wonderful.

All this means that he is happy for me to have beta blockers - in fact, turns out that some drops to treat glaucoma have beta blockers in them.

So I left a message for THAT neurologist and picked up a prescription today. I don't trust her but will make do until I find one I can actually trust. So no more pizotifen for me tonight, and I start the new medication tomorrow. It isn't propranolol, which gives really, really bad nightmares. I *think* it may be atenolol, but of course it has a different name. I am hoping this will have less of an effect on the dreaming - wonder if this is why I am to take it in the morning....?

I feel a little bit excited. It would be great to have more migraine control with no weight gain, but only time will tell.