hi,
does it affect anyone else? Went out last night, was fine sat in the pub (not drinking- that was a new experience but hey things have to change!)... But we then went into a pub/club and the flashing lights from the dj was torture.....we had to leave.
Thanks
jo x
Hi Joanne,
Yes this is quite normal that any bright lights will either make ay sort of migraine even worse or in fact bring them on.
The pain as you say from bright lights is torture and even eye pain during before or even after a migraine can be torture.
I have had my eyes thoroughly examined twice in case anything wrong with my eyes, but its all to do with migraines.
Good luck Joanne and stay away from bright lights!
Hi
brilliant just another thing to add on the not to do list! :-) with my HM I very rarely get the headaches - it was the flashing white and pain when I closed my eyes.
I also got my eyes checked out (I wear glasses as well) but that side was all ok.
Thanks for the reply hope all ok with you
I am exactly the same as you joanne, no headache with HM unless I get a cluster headache as well so painfull!
Btw no alcohol allowed on my meds, very boring and miserable at times, but I deal with it as we all have to.
yes I agree, eyes can get very painfull from all lights.
Good luck Joanne, keep us updated how you are getting on.
Take care
I also find that the flickering you get when driving along a tree lined road when the sun is out causes a problem and also ironing stripy clothes. I then get the visual disturbance followed by a headache. At least I get out of the ironing :-).
Hi
I have stopped driving, concentrating seems to be a tigger esp at night. I always wondered why ironing stripy clothing was an issue...my husband always liked ironing (weirdo) so he does it all - bonus :-)
The lights used to bother me whilst driving at night so I got some night driving glasses, its hasnt cured it, but helps.
It must be a man thing about ironing as I like it too, no stripy clothes so that helps lol!
I was going to get night time glasses but my Consultant said they wouldn't help cause of the condition!! Brill :-)
lol must be weirdos !! 😂 :-)
Hi Jo
I previously wrote on this page about my condition and that I suffer four Migrain type headaches 24/7 my job is DJing and but I am rarely effected by my lights but your right in thinking that they do effect people. It has been found that folk who suffer with Epilepsy which can be brought on by flashing lights would get a Migrain type headache before fitting. Previously I referred to my headaches as Migraine type as some are Occipital neuralgia . Next week I have a second procedure to see if I am a good candidate for an implant under my scalp which controls the pain by remote control. I have had my driving licence revoked and now have a free bus pass. I am fighting with the DWP because after a health assessment they don't consider it a disability despite being rolled up in pain sixteen hours a day / night and now effecting my work. So now takingthem to Court. Hope you gets to a place where you andall who suffer in silence with these disabilitating headaches.
Chris
Oops. I meant to say. Hope you get to a place where you and all who suffer in silence with these disabilitating headaches find a remedy.
Yay!! Love being a weirdo :-D better than being dull and boring!
So hope all goes well with you.
Btw do they admit you to hospital when you get HM thinking its a stroke? My HM mimics a stroke really well and people around me, when I have one say I look like I am on another planet (mind you some people say I look like that all the time), so I have had many stays in hospital since getting HM, although the time spent there now is a lot less due to Flunarizine. Whats your experience Joanne?
Lo :-)
my 1st experience was 6 years ago and I was in hospital with them thinking it was a stroke.....in for 10 days and a Consultant says its Eposodic Ataxia and Hemiplegic migraines.....I see a private Consultant in Brentwood who's a specalist in Ea and and NHS consultant who's a specalist in HM......
when I have an attack it's my husband who notices first...it's my eyes then my speech goes then it's the tirdness.....drained I feel. So I don't go to hospital I just ride it out....unfortunately I take time off work for it....which I hate doing :-(
hi Chris
sorry to hear your going through this 'red tape' it doesn't help.....
my work doctor has classed it as a disabelitly and under ther Equality Act as it affects my every day living when I an attack.....this is an invisible illness and ppl don't understand it...it's frustrating.
good luck
yes, unfortunately I cant ride it out as I need help to move etc, living on my own doesnt help! As soon as they know I live on my own on a first floor apartment with no lift, they keep me in. So for 2 to 3 days I am off work also, which doesnt help my bonus much at Christmas :-(
When I get an attack the first thing I notice is a great pressure on the left side of my face, then increasing weakness down my left side and I can hardly talk. and all I want to do then is sleep, paramedics have to keep waking me up. But thankfully it soon goes and I am back in the gym or running lol. Always someone worse off thats what I say.
Good luck and take care Joanne
Keep us updated of anything new that works for you
Sorry didn't mean to cause offence when I said 'ride it out' ....I live with someone and sometimes it can be tough....HM is a an arse and hopefully someone somewhere can find a drug that will help.....x
No really you didnt cause offence at all Joanne! I would ride it out too at home if I lived with someone as all I need is some support, dont really need hospital. However my GP says I should always call an ambulance, or someone should, as it could well be a stroke.
Flunarizine is the best drug my Neurologist said so this is all I can take right now.
I know you understand all about HM so I wasnt offended when you said ride it out at all. Its so easy for words to be taken the wrong way.
On the contrary we have had a bit of a giggle about ironing being fun lol for weirdos :-D
Talk soon
Hi Joanne, you're so right about people not understanding. Many people think that migraines are just a headache, my mother-in-law only yesterday couldn't understand why I have so many, she thinks it stress but I haven't been stressed continuously for the past 15 years. Interestingly though, my neurologist doesn't believe that migraines are triggered by anything, in his opinion if you're going to get a migraine you'll get one whether you've been stressed, eaten chocolate or cheese, experienced flashing lights, it just coincidence. My latest medication is pizotifen and I've been told if this doesn't work there's nothing else I can try.
Hi kath
Be careful with the pizotifen. Monitor yourself carefully. I have weaned myself off mine recently. I had so many side affects I think I'd rather just have the migraine. Aching limbs, raised blood pressure, sore throat, breathlessness and huge weight gain!
Hi Lisa-lou, I have been taking pizotifen since November without any side affects so far. I started off on 2 x 0.5mg, which didn't make any difference to the frequency of migraines ( once a week) but I did find that I could control the pain with just extra strength paracetamol, which is something I've not been able to do for years ( the only pain relief that normally works is sumatriptan). So my gp has increased my dosage to 3 x 0.5mg but that hasn't made any difference either. I am due to see him again next week but I don't feel inclined to increase the dosage. Did you find that it made any difference to your migraines?
0.5 was no improvement but x2 was much better. Although i was still experiencing a weird draining feeling in my head so gp suggested maximum dose which is 1.5. I couldn't bare the other side effects. I started taking them in October 2014. My dose was increased monthly. I hope you find a solution.