Kaz: The Story So Far....!

Hiya Everyone, I'm Kaz, I'm 34, and I have suffered chronic migraine for 5 years TO THE DAY!

Basically, I'd had a quite a few what I would call 'standard' migraines (for want of a better description) throughout my life, and 5 years ago, I thought maybe I was starting to get another, as I had visual disturbances, nausea, and felt like someone was smashing my skull in with a hammer... anyway, I took myself off to bed, and woke a couple of hours later, absolutely terrified, as I couldn't move, see, or speak. I felt the most mortal drunk you could ever imagine, and as if a gang of people were kicking me all over, and stamping on my head. I lay like this all night, all night, until my husband woke in the morning and saw the state of me. He asked what was wrong, by this time, I could make noises, but what I wanted to say in my head was coming out jibberish, and completely slurred. One side of my face, and my eye had drooped, and I had pins and needles/numbness all down one side, and severe pain down the other. I couldn't walk, I had to crawl along to floor if I needed the toilet! He obviously rang work to tell them I'd be off, then my Mam came around and took me straight to the doctors. The doctor took one look at the eye drooping, thought it could be bells palsy, and sent me off to the eye hospital. After about a week of going backwards and forwards to docs, they just said it was probably a bad virus. On the second week, I saw a different doctor, who was much more concerned, and referred me to the stroke unit. My 'urgent' appointment for this came through 4 weeks after it started, and by this time, things like the drooping eye has lessened loads, I could speak more, but speech was still affected and slurred.

After tests at the stroke unit, they went through my history and thought it could be a mini-stroke, more than likely caused by me coming off the Dianette pill, 6 months previous. I was then referred to a Neurologist, who, to be honest, was one of those ones who said "well, theres nothing major showing on your mri's or lumbar punctures, so you must be ok, it's 'JUST migraine', you could have had a mini-stroke, and that has left damage on the nerves in your brain" (and say, in not so many words, you're making out symptoms are worse than they are, get on with it!) Anyway, over the following 3 years, I tried basically everything he offered, before sticking to Gabapentin and Sumatriptan for over a year, for no other reason than the Gabapentin helped me sleep (insomniac), and he reckoned that this would help my migraine as it would break the cycle of me being exhausted all the time. However, I wasn't happy with pumping my body with 9x 300mg of drugs every day, that did nothing productive/helpful to the migraine situation, but basically make me sleep a little better on a night time, so went back to my GP for advice on stopping. My GP is a wonderful woman, and said "I've been thinking that for years, but I needed you to tell me you weren't happy with the neurologist, so I could refer you to someone else - you can't go on like this" So she referred me to a consultant who could offer botox.

By the time I got to the consultant, I'd suffered for 4 years, and was feeling very frustrated by the lack of help/understanding. During the initial consultation he asked "Why have you come to see me?" I got a bit upset at this time, and said "I've had to live with this for 4 years, I can't take it anymore, I really need to try something else" He then took me through to do a physical examination, and during this asked 'how is your mental health? do you suffer from depression? just you got really upset through there' To which I replied, of course I was upset, I'm a young lass, I feel 80 years old, and have felt like a terrible mother for the past 4 years. I feel guilty that I can't care for the kids, and frustrated that nobody can help me!

When we went back into the other room, he said he thought I was taking to many sumatriptan, and to stop taking these, and all other analgestics, including ibuprofen and paracetmol (which I didn't bother doing much anywhere, as it did nothing), and he thought the triptans were causing medication overuse headache.

Anyway, since then, I've stopped taking everything, been tried on topiramate, epilim, and others, which don't do anything for me. He said at my last appointment that I suffered chronic migraine, and that I would be a definate candidate for botox, but as yet it's unavailable on nhs. I really can't afford this treatment.

I'm due to go back to see him in a couple of weeks. Since my last appointment, I've joined Migraine Action, and found the information really helpful, and now actually think perhaps its not stroke related, but does sound like I have hemiplegic migraine as well as chronic migraine. I've done diaries in the past, but have never had a consultant look at one yet, so have decided instead to list everything I've ever been diagnosed with, to see if there's any link, and what my symptoms are, incase I've ever forgotten to tell them (or, more likely, they've forgotten to listen, or write anything down... I find myself repeating the whole saga EVERY time I go!)

There's my long story.... sorry if I've bored you all!

Ps: Through reading a couple of other stories, I can identify with other conditions which may be related: I also have endometriosis, TMD, anaemia from time to time, and think perhaps hormones may be a trigger for the hemiplegic type episodes...

Anyway, great to share this, the site seems great and will, I'm sure, be very helpful to all us sufferers, and our families!

Thank you,

Kaz

(sorry if any errors, I've just rattled away, but my eyes are shot now, so I'm not going to proof read before I press send. Also I apologise for length, and if parts of this message should have been posted elsewhere, but I'm new to forum-world, so please forgive me!)

Just popped in and wanted to say a big, warm 'hello' and welcome. We all understand and are glad you found us.

Don't worry about typos (I do some classic ones at times) , anyone with these levels of problems experiences the same issues with word finding and spelling..you are amongst friends

Tee (big cheer for her and all her hard work) has just started the forum and it's great to see new people joining all the time.

Have a browse round when you feel up to it and post if you have any questions. If you want to speak to someone privately then you can always use the PM (Private message) ..it's basically like email so is just read by the person you address it to.

I am sure other member swill be around to welcome you soon.

All the best
Jane
xxx

Hi Kaz, a big welcome from me too.

It may be worth asking your GP to refer you to a neurologist who is a headache specialist. There are not many in the country but if you want you can PM me where you live and I may be able to point in the direction of the closest one to you.

If you have any questions, please just fire away.

Best wishes,

Michala
x

Hi sweetie - so glad you made it..... and HAPPY ANNIVERSARY lol - can we have a 'happy' anniversary for when I went chronic day

Thank you so much for such a fab story - just sorry you had to go through it - BUT it mirrors more than just one persons here.... myself included

Kala is right - you might get a better response seeing a neurologist who specialises in headache - I know that there are a number of trails of botox going on round the country at the moment and if these get a 50% improvement rate then Botox will be available for more people. Might be worth looking at the neruos near you and seeing if any are on the trials list.

Hope you feel better tomorrow.

Tee x

Ah, thanks girls! Lovely to meet you all

The consultant I'm under now is a migraine specialist I think, he's done talks for Migraine Action, and he actually does the botox for migraine privately.

I'll get a new update when I see him next!

Will have another look about the forum tomorrow. Thank you all for making me welcome x

Hi Kaz - nice to meet you x

kaz, just wondered how you were getting on? Xx