Hello, I was wondering if anyone else experienced this: Prior to being diagnosed in 2004 and starting Capaxone (no other drugs yet), I experienced Migraine Headaches at least once a month that were very disabilatating , however after starting the Capaxone, I have not even had a headache that wasn’t self induced (Belgian beer is THAT good) lol. If so was wondering if GPs should be told for prescribing to non MS patients who suffer from migraines? Greg
You may have suffered from Trigeminal Neuralgia or Occipital Neuralgia as opposed to migraines? Just a thought
I suffered from migraines at least once a month for 4 years before any MS symptoms and had tried several drugs for them. However mine do seem to be linked to hormonal problems and I can set my calendar by them. Since MS is also exacerbated by hormonal changes though I am still not totally convinced that there isn’t a link. Unfortunately mine haven’t completely cleared up and I do sometimes suffer from them more than once a month.
I now take topiramate 75mg daily for them and they are down to a severe headache without the debilitating nausea and the sensitivity to light and sound. I can still function and work for several days with a migraine although eventually the nausea will get me and I do have to take to bed. They are nothing like they used to be though.
I have been on Rebif for the past 4 years so maybe I should have tried Copaxone instead if that is a happy side effect?
I don’t know, it worked for me, like you said a happy side effect Greg
I am another migraine sufferer and have just stopped Topiramate (80mg) as my migraines are just getting worse and worse. I am now starting Sudamigran instead.
I was on Copaxone for about a year and my migraines showed no improvement at all in that time, in fact they continued to increase in frequency and intensity. Mind you stopping Copaxone didn’t make things any better either! So for me Copaxone was neither here nor there as far as migraines go…
To be honest, given the expense of Copaxone and the effectiveness of far cheaper drugs for the majority of people I can’t see NICE ever approving Copaxone as a migraine treatment even if a link was found
I hope the Sudamigran works for you.
I’m holding out for the menopause as my mum started suffering with migraines in her 40s and they stopped after the menopause for her. I think I only have another 8 or 9 years to go if it’s true that you follow your mother’s pattern. I have given up pestering the GP as I really don’t think there is any drug that will work for me. They all help a little for a while but the migraines never completely go away.
I was hanging out for the menopause for the same reason as you but I have been going through the change for a couple of years now and there has been no improvement yet in my migraines. If anything they have been getting worse.
The Drs think though that they are linked to another auto-immune disease I have, APS, and so we need to look at some other drugs for that one too. I am seeing the haematologist again next month and may get some of my meds for that jiggled around.
The migraines are actually causing me more grief than the MS. I get several a week and at present I have had a migraine every day for the last 2 weeks without a break. I get hemiplegic migraines which cause neurological symptoms like weakness and numbness and even complete one sided paralysis so it is very debilitating. And confusing… it is hard to know if I am having a MS relapse or a bad migraine
So sick of being sick…
Sorry, whinge over
That’s horrid. When I have a migraine it makes my legs hurt more as I feel totally washed out so you really have my understanding on this one. My migraines seem to hit just when the MS is easing off so, if it’s not one thing it’s the other. Why is life such a female dog sometimes. At least mine don’t cause numbness or paralysis.
You go ahead and whinge all you like - you have a very good reason. I could cheerfully murder someone when I have a migraine especially if that someone is making a lot of noise. In desperation I have even drunk lots of alcohol sometimes (if I can keep it down) - the theory being if I am going to have the hangover first I may as well have the alcohol to warrant it.
I really hope you get your migraines sorted out soon. Two weeks is a very long time to have a migraine. I thought my 3 day ones were bad.
Best wishes for a speedy recovery