I don’t know where to start, I’ve been reading what everybody is saying and I feel even more lost and upset, I am so very very scared that I will be like this for many years to come, that it’s just never going to get any better. I’ve been suffering with chronic daily migraine for a year now, I cannot cope or handle my pain and they way my life has changed, it is intolerable, my life has stopped, I say life, it’s not a life. I had everything ahead of me, had it all planned out lol, yes I’m sad , my partner proposed at xmas 2011, and this illness is running everything I couldn’t celebrate, I cant plan to get married, It’s all disappearing out of my reach. I’ve been unable to work for a year now.
Please does anybody out there have any positive outcome of having chronic daily migraines with visual disturbance? I need something to keep me strong, it just seems like there’s no hope out there.
I’ve just turned 26 years old, I have no children, I live with my fiancé and our kitten he’s the only thing that keeps me going. My partner is very good and extremely patient but I am so alone, I am incredibly frustrated, angry, tired, and depressed, I cry at the drop of a hat, I feel like I’m going to lose everybody, especially my friends, I feel like a burden. I wake up with chronic pain in my head and I go to bed with pain, it’s incredibly disabilitating. I have pain all the time, it never ever goes! It differs with levels of pain, ranging from 1-10, the same goes with my visual disturbance. My head pain is generally always over the left side of my head, over my eyebrow on the inner of the brow and then spreads all around. The left of my face is numb almost all of the time, all around my eyes, my left face can drop slightly too. Every 30 mins is different in my day to day life, my migraines can intense in pain within seconds for no reason at times. im up down up down all day, no morning, afternoon and evening are ever the same pain wise.
I have had migraines since the age of 15 (we think mine started from having the contraceptive pill). I then had the Implanon contraceptive inserted into my arm and i had this for 7 years, i then had it removed and had the mini pill for few months then another contraceptive pill for another few months, the consultant basically thinks this is what has caused my chronic daily migraines. I’ve been suffering with the chronic DAILY migraine since September 2010. I have almost been house bound for a year now. I have had to stop driving, I can’t go out into shops as the florescent lighting is horrendous for my head and eyes, I struggle to travel in a car at times as I feel disorientated and all makes my vision and head pain worse. The natural light affects me, if it’s too sunny, too dark and dingy etc all affects my head and eye sight. I find it incredibly hard to have eye contact and talk with people, this makes my head pain and vision awful, it gets worse and worse the more I talk. Evan if 2 people are talking in the same room as me and I’m not included in the conversation, this also affects my head, the way somebody talks effects me, their tone of voice. I struggle to read, to look down, to use computer, to use my mobile, background noise, concentrating, to talk on the phone, if the postman comes to the door and intropes my routine this also makes my pain and vision worse, I struggle a evening meal for my parneter. I can’t leave my house to go for a walk on my own as I feel dizzy most of the time due to my vision; my confidence has hit a massive low as expected. Every single aspect of life is difficult no matter how simple it was and easy it was to do before, it is all now so incredibly hard.
On top of my disabilataing head pain, I also have the visual disturbance all the time too, this also ranges in levels from 1-10, it goes up and down throughout the day and can change every within minutes. I do find that my vision tends to be better at night, in the evening, when it’s dark. People ask me what’s worse the vision or head pain, but they are both just as bad, as they both stop me from doing things. Apparently my vision is like vertigo, this is constant too. I have had my eye sight tested and I have almost 20 20 vision. I can see everything, but it’s like everything is moving a mm, shaking, which leaves me feeling disorientated and dizzy, I find it very hard to describe this part. When I was 15 I used to get the normal watery vision with the typical migraines, but now has turned into the above. Also when I was 15 I noticed that white rooms would set this off, also commuters were my trigger – both still are to date.
I feel like I am being judged all the time, the rare occasion I am well to go out, or manage go with my partner to a shop or we potter to a garden centre as these places are quiet and outside with not many florescent lighting, and we bump into someone – I’m being judged – ‘she’s fine, she looked good’! But what they don’t know. I have had to pace myself, I have had to do NOTHING before, I’ve had to make sure I go to bed very early, so I’ve slept well, I have to slowly get up in the morning, I can’t get dressed in the morning straight away, I have to at eat at regular times, I have to have a shower around lunch time as if I have it earlier it wipes me out, as I get exhausted. I have to have somebody drive me, I cant look through the cupboards, sort out the list as all upsets my head – therefore a simple food shopping trip is not simple, but my friends don’t see this, they see me out, having a chat, being nice and smiley for abit, they don’t see the before or after effect. This is what I am finding so hard to deal with, I know I shouldn’t care what people think, but I do, and I get so frustrated that you CANT SEE PAIN! It’s almost like we need a sign us, my head is in a lot of pain! All the time!
Things that’s help: ice, ice is amazing, I have ice packs in my freezer, they are always on my head
The only time I have relief from head pain and vision is when I’m in the shower – no idea why, I tend to have very very very long showers lol, apparently this is the case for most of us.
Massaging my head.
I also have noticed I generally pick up at night time, when it gets dark – don’t know why?
A good day for me is I’m able to get the hoover out, tidy up and clean our tiny 2 bed house, yes it takes me forever, but that’s a achievement, it sounds crazy to a 'normal' person, but when I’ve achieved that I feel amazing, I feel 'normal', it’s like when I’ve managed to have a girly friend over one evening for a few hours, it’s amazing to feel 'normal' to socialize, they don’t know how much it means, even if they do have to come to me and I can’t go out, the little things like that mean so much. It’s insane how much you take for granted when you’re well isn’t it, but I suppose that’s life, all I can say is, it will only make us stronger ladies and gents
There’s one song that really does keep me going, it’s by James Morrison – have a listen if you can, it’s called ‘one life’ makes me cry.
Tablets and things ive tried so far:
Topiramate – the most awful tablets i have ever tried! Side effects were horrendous!
Cutting foods out/caffeine etc
I’m just about
to try botox injections, does anybody have any positive news on this please?
Is there anybody in the Leicestershire/midlands area that has had the botox injections on the nhs and if so who did this and where at?
If the botox don’t work the next stage is the try some tablets called Flunarizine, has anybody tried these? What did you think?
Thankyou for taking the time to read this, i really do appreciate any help, advice, info, just anything, please do comment no matter how small the comment, anything will help im sure. Evan if nobody can help me and this can helps somebody in the begining of diagnosis, please i do give you one peice of advice...stand strong to your doctors/consultants, they dont always know best, you know your body, you know your pain, they dont live with it, make sure they know just how much it effects your life.
Sorry for the essay LOL
And the spellings