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.

still health

I need to write about my trip to Costa Rica...it was amazing. Hopefully I can find my camera and rustle something up.

In the meantime, things are good here. I feel crappy but only in a jet-lag-why-can't-i-sleep-why-can't-I-stop-sleeping sort of way, so that's fine. I was delighted to find that 'my' migraine doctor is still at the clinic and have an appointment on Thursday to see him. I am trying to ignore the fact that I have to be at his clinic for 8.30 am....I even managed to sort it all out in German, so that's OK. From my brief conversation with the receptionist, I won't be the first person presenting with hemipleigc/basilar migraines which is both heartening and disheartening as you can imagine.

Tomorrow I am going to try to haul ass into Zurich and get a few things done...but then again I ma still be in bed at tea time!

Health update

Well, first of all, it is good news. Thenfirst thing the doctor told me today was that there was definitely no bleed, new or old, in my brain. In fact, he was very unhappy with the way that the scans had been read...he said that the anomaly was clearly a blood vessel in my brain and that what had been reported was just so wrong. To add insult to Injury, the person doing the reporting completely contradicted themselves at the end of the report and didn't even notice. At the end of the consultation the doctor showed Number Guy and myself the actual scans and took a lot of time and trouble going through them to show us exactly why he thought that there was no indication of a stroke.

During the examination it became obvious that I do still have altered sensation in my right foot....this became very obvious as I was feeling rather blasé aboutnthe blunt pin that he was testing my foot with. he then used the same blunt pin on my fingers and I nearly shot off the examination table. He said thatbthis sort of numbness is very common with migraine, as is my word-finding issue. He thinks that I had a basilar or hemiplegic migraine. I have given a couple of URLs at the bottom of the post. To be honest they don't really explain theybtype of thing that can happen, possibly because it is pretty scary, I don't know. A quick Google will bring up lots of information should you wish to know more.

the doctor said that he has followed patients who have had very, very severe attacks of this sort. To the extent that they mimic a stroke even more than mine did. A lot of these patients never have another episode, so it really is a case of getting on with my life. He didn't categorize the attack as either the basilar or the hemiplegic as I think I was fortunate enough not to have enough symptoms to make the differential diagnosis but he is confident that it is 'that sort of thing'. He didn't want to do anything about my meds as he, quite rightly, felt that it had taken a lot of adjusting in the past to get to where I am now. I did, however, ask him if he could do anything about my sleep, which over the past few months has been very bad. Now that I know my brain isn't frying I felt that this was the single thing that would help the most. I was very hestitant about asking since in the UK there is still quite a stigma attatched to sleeping medication......woman+ sleeping tablets = neurotic. The doctor thought that it was a very reasonable request and apart from the huge relief at the diagnosis I am looking forward to what I hope will be the best night's sleep I have had in months.

apologies if theere are glaring typos in this post....I haven't worked outnhow to scroll up,through the text when I am typing on my iPad, so oncenit goes beyond the top limit I can't get back to it.





http://www.migraine.org.uk/index.php?sectionid=1254

http://www.migraine.org.uk/index.php?sectionid=210

6 weeks

That's about the length of time that my migraines have been under control. Yay :0) This is how it is for me and 'my migraines', that constant companion. I get ups and downs. The downs really suck- weeks on end of painkillers and making sure I have them and my other meds with me, chronic pain, constant fear of an acute attack. Then something magical happens- it all.just.stops. The past week or so have been a bit niggly, as I have a major stress coming up, but other than that I have had a reminder of what it has been like to be a normal person. :0)

New personal best

10km, 1 hour.

This health &v fitness thing sure is odd. I didn't get up until 1.00pm today because I had (another) bad migraine. Ye this evening I feel good enough to go on the crosstrainer.

What is even odder, and more frustrating, is that my weight stays resolutely the same. I am not eating between meals. I am not eating huge amounts of carbs. I am not drinking lots of milk. If my measurements were changing, then that would be great. But everything stays the same :0(

Seize the moment

(Hard to do when it took me a few moments to work out how to spell 'seize'- German is really screwing with my English.)

This week has been harder than normal. I am having lots of migraine problems. It's getting me down a bit.

However, one of the things about living with chronic pain is that you learn to make the most of the good times. And to be fair, I have had lots of good times with the current med regime. I had a couple of hours today where I felt not bad at all. I leapt at the chance to go on the crosstrainer. Well, okay, I admit that is putting a bit of a gloss on it. I dragged myself upstairs and did my first 60 minutes for a long time and clocked up just over 9.00km.

Feeling far too knackered to feel smug about it, I then sat down to do an hour of German, which wasn't too bad at all.

I also managed to chuck on some pumpkin and apple soup (my favourite) and slung some soda bread in the oven. I'm starting to feel really crappy again so it's off to the sofa for me and an hour or two of Star Treck- in German, natarulich ;0)

sulk

I've had a migraine off and on for 3 days now. It hasn't got to the head-pounding stage but I am feeling a bit on the miserable side. Nauseous too. This is when I am very grateful that I am not trying to hold down a job, nor have to care for 3 children under 5.

Migraine update

Saw the (lovely in every possible way) neurologist today.I had stopped taking the vitamin B2 and Co-enzyme Q10 supplement because...well, because the beta blocker was working so well for the first three weeks that I was not motivated to take it. Having discussed the matter at length I will be taking it religiously for the next six weeks. I can increase the current beta blocker if need be, but I am not going to do that just now because I don't want my ability to use the crosstrainer affected.

I am also going to contact a specialist who is running a programme relating to hole in the heart and migraines. It is just possible that I have this defect. It is also important to know whether or not the hole is there because a very small hole can increase the chance of small emboli being thrown off and lodging in the brain. Hmm. Nice.

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.

Is this the end of life as I know it?

Sanomigran, also known as Pizotifen in the UK and Mosegor in Switzerland, is no longer available here. It is no exaggeration to say that without pizotifen I have no quality of life...

An observation....

When the weather got really hot at the beginning of spring, I had a few weeks of suffering with migraines, including one real belter that was one of the worst I have ever experienced.

About a week/ten days ago it was as if someone had thrown a switch and summer immediately became autumn. Once again, my migraines have been bad. Today, after a visit to the Lang shop (more later) I am again suffering.

Seems to me that the changes in weather are really influential so I I will be paying attention to seasonal changes next year.

Now I am going to curl up on the sofa with my yarn haul from Lang - it is modest, only 2 sweaters-worth, but I am certain petting it will aid my recovery ;0)

Losing is winning

When it comes to weight loss,anyway.

As you will know if you hang about this blog, I have migraines. Terrible migraines ( why am I adding 'terrible', I wonder? Let's face it, if you have had a migraine, you know that they are all terrible. Suffice to say, some of them have been more terrible than usual).

I would like to shake by the hand the person (people?)who linked tryptan drugs with migraine prevention/treatment. I take Pizotifen on a daily basis and Zomig when I have an actual attack. As well as the actual migraine itself, I can get a lot of head/face/neck pain which the Pizotifen helps to keep at bay.

However, Pizotifen does have one significant drawback - weight gain. Here's a little something that I found on the net:

Investigating the obese patient
The causes of obesity include:

excessive calorie intake
myxoedema
Cushing's syndrome
polycystic ovary syndrome
medication (oral contraceptive pill, corticosteroid analogues, sulphonylureas, tricyclic antidepressants, pizotifen)
http://www.24dr.com/reference/library/eat/obesity/obesity.htm

I don't know if I have said this before, but one pharmacist rubbished my complaint that when I take 1.0mg I find it hard to stop eating, and when I have to take 1.5mg I literally cannot stop eating. When I went to the doctor here, she was astonished that I had been prescribed Pizotifen, since here they use it to treat anorexia . Need I say more?

Here they tend to use Magnesium therapy . I tried that but it didn't do much for me. However, with the recent upsurge in problems I have started to take it in conjunction with the Pizotifen.

So, what is all this rambling about? Put simply - when I am on high doses of P, I eat like ahorse and gain weight. When I am on lower doses I can fight back a bit and shed some pounds. I have lost 10lbs in the couple of months. If I lose another stone, I will be back at an acceptable weight. This is still the weight that I was when I was 9 months pregnant, so I don't think it will be unreasonable.