Progress: Hi everyone, As some of you... - National Migraine...

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MigraineGirl profile image
14 Replies

Hi everyone, As some of you might now im 18 and have suffered with migraines for the last 10 years, the migraines are chronic and have taken over my life, i was stopped by my tutor from enrolling back into college this year and while i wanted to fight her on it, the fact was i was to ill, my weeks are basically filled with me in my blackout bedroom with maybe 1-2 days if iam lucky semi well.

Ive been seeing a Neurologist for the last two years recently i stopped taking Gabapentin 600mg 3x a day due to the fact it was only making me worse,i saw my neurologist on the 20th and its fair to say he finally acted as though he understood how ill i really am, He decided to give me Candesarten 4mg for two week 8mg for another two weeks- he said its known in Europe to be a great for chronic migraines, he also put me on the waiting lost for Botox.

although i'm not looking forward to 31 injections around my head i am willing to try anything to get some sense of normality back into my life.

If anyone has tried either of these - Candersarten or Botox treatment for Chronic Migraines, please comment and let me know how it went and the results. :)

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MigraineGirl
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14 Replies
missyam profile image
missyam

Hi

I'm 55 and have suffered very bad migraines all my life up until 3 yrs ago when my doctor said I might have a wheat intolerance. (I was having a bit of bowel trouble). O gave up wheat and gluten and my bowel situation improved but mu migraines also subsided. I mpw only get the odd headache whereas before I had one every morning in fact ot was very rare for me to not have a headache to some degree whoch would often go into a migraine.

Maybe it will help you to and yher are so many GF fpods ouy there now

My blood test was just routine re my bowel problem amd o may never have found out.

Hope this helps.

Missy

babs1234 profile image
babs1234 in reply to missyam

Is there any test to see if you have wheat intolerance?

I heard about someone getting Botox for cosmetic reasons - he was vain! - but he noticed his migraines eased after. I don't know! Nothing ventured nothing gained! Good luck and I hope you can get back to your course.

Sewnsew profile image
Sewnsew

Hi, I'm much older than you (58) and have had migraines since I was 13. About 8 years ago I also started getting facial pain, this also triggered migraines. Many preventatives were tried and I ended up on propranolol, nortriptyline and topiramate. This helped but did not completely stop the pain so I saw another neurologist and started Botox. The affect was amazing, it reduced the facial pain and migraines, 31 injections, as you say, really they are nothing!

Make sure you are keeping a diary of your migraines and medications. I wasn't and had to wait 3 months for the Botox while I recorded my migraine diary.

I would also advise you to read the NICE guidelines for Botox for migraine, they were to be revised this month, as my neurologist was very firm about following them.

Good Luck😀

Claudeminh profile image
Claudeminh in reply to Sewnsew

Hi thanks for great reply. I will look up the NICE guidelines, I have never heard of them. I am in Australia, or you in the UK? Wow I really hope my story ends up like your story and it helps. Really glad for you that its a good outcome. I have to keep the diaries also and have now for 11 months so thats helpful. Hope you are still feeling good.

babs1234 profile image
babs1234

Have you tried acupuncture?

Claudeminh profile image
Claudeminh in reply to babs1234

Hi Babs, yes I have had it for about 3 years and not sure if it helped. I mean, it could have been so much worse without it maybe? But it didnt remove the migraines from my life in a significant way.Did it help you? Im having trouble affording it now days.

babs1234 profile image
babs1234 in reply to Claudeminh

Like you I'm still getting the clusters but I'm not having them anywhere near as severe and think I am getting slightly more days pain free. Not sure if its the acupuncture or whether they would have started to ease anyway giving up coffee, tea, alcohol. But I'm to worried to stop in case they come back with avengence so just going once a week. Wish I could afford more but who can work when they have been suffering constant migraines?

Claudeminh profile image
Claudeminh in reply to babs1234

yep I know about the work thing. Im giving up one of my casual jobs tomorrow so I can function at university for the next 3 months. It hurts me financially but I cant work anymore than the 2 days Im doing. And I always get migraine after I work. Im studying occupational safety because its a high paying field in Australia and hoping I can work in it and work less for more money. God knows if it will work out. Last week I thought my working days are over. After 9 days of chronic migraine straight I was willing to give up forever. Last two days migraine not as bad. Maybe the botox is kicking in. Still giving up the other job, cant risk it and cant handle it either. Im glad the acupuncture is working for you, I reckon its fantastic but just not sure if I can afford to go back to it yet. All the best to you and good luck

Claudeminh profile image
Claudeminh

Hi I'm in Australia and have had 2 rounds of injections of Botox. First round had good results in the second month afterwards. 25 days migraine free in May! Wow. June had 14 days of migraines. July had 15 days of migraines. But currently on 8 days of straight migraines. Not sure how it will go as had second round injections 2 weeks ago. I think you have to give Botox a try. It s not painful and no side effects. So it did help me but not sure how round 2 will go. I hope you get it soon, how long is the wait list for you?

MigraineGirl profile image
MigraineGirl in reply to Claudeminh

Hi, wow 25 days migraine free must of been amazing! i hope the next round will work for you! My neurologist is the only one who does it ,he's behind on treatments by about two months , I've been put on the waiting list so around 2-3 months before i get an appointment. fingers crossed it works because im sick of taking medication after medication that does nothing but make me sleep.

Claudeminh profile image
Claudeminh in reply to MigraineGirl

Hi, wow thats quite a long wait. Are you in UK? In Australia the health system is really good mostly. Even so I have private health cover as well but it doesnt affect the botox payments as the government pays for it. Yes, 25 migraine free days changed my life. I thought maybe I could return to the land of the living and I probably ran around too much. It was just too exciting. Its really hard to stop yourself once you get a migraine free day. May I suggest if you get one, dont run around like its your last day on Earth, and try and pace yourself. I am having to learn this hard lesson. Did you have a precipitating disease to cause the onset of migraines or did they just appear in your life? Its not very fair is it. I hope you get to the botox soon, it doesnt hurt much either so dont worry.

MigraineGirl profile image
MigraineGirl

Yeah im in the UK-Wales, I've waited nearly 6 months a time for my last three Neurology appointments.thanks! i'll take that into account it's one of my mistakes when im feeling a little ok i do to much and end up in bed by midday or evening . I hope things work out for you , fingers crossed it works out even if its for a little while, my grandfather doesn't have much time left so i really want him to see me well,even if its for a small amount of time.

Claudeminh profile image
Claudeminh

Wow, life can be a bitch hey. 6 months is too long for someone in constant pain. I think you should complain more and get the appointments speeded up if you can. God speed on your recovery my dear. Just remember, life changes all the time so that means there is potential for yours to change too, for the better too. XXX Best wishes

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