Hi, This is my first time posting. I have had chronic migraines for 26 years since the age of 19. I woke up one day with a severe headache at 19, that never went away. Prior to that I had episodic migraine at about 5 headaches per year. I have never had even an hour free of pain since they became chronic. I have a headache every day, although the severity varies. I have tried almost every preventative treatment there is – they all had terrible side effects and none made any difference to my headaches (sandomigran, propranolol, amitryptiline, venlafaxine, lyrica, topirimate, botox). I’ve also tried zinc, magnesium and Vit D. I have physio, massage therapy and trigger point injections weekly.
I had never found a triptan that worked until two years ago when my neurologist recommended relpax (eliatriptan). This tuned out to be a game changer for me, as it worked really well. BY using it 2-3 times week I could finally abort the worst headaches and get a few better days in between. My quality of life improved enormously and for most of each day, with a few exceptions I could keep my pain at a 2-3.
Unfortunately, last year I had a severe iatrogenic reaction to an asthma medication. It caused a horrible neuropathic pain condition called small fibre neuropathy. It started in my mouth (where it is called burning mouth syndrome) and then spread to the rest of my body where it caused severe burning pain. It’s very hard to treat and I did not respond to any medication. Luckily after 10 month it has abated significantly except in my mouth.
However, the point of all that is it changed how I managed my migraines. Because of the burning mouth syndrome which causes not only pain but also extreme dryness of the mouth I could no longer take codeine to manage the lesser headaches between doses of triptan. So I stated using the relpax every day, because I was in so much pain already, I couldn’t add in headaches as well. And after 4 months it started working less well and after another couple of months I had to stop using it all together because it no longer worked at all. For the last four months I have had no abortive and my headaches are out of control. I have always worked full time and now I can no longer function and I am in so much pain my quality of life is zero.
So my question is, has anyone had their triptan stop working and either found another that works, or had it start working again after a break?
I live in Australia and we have a much more limited range of options than the US. Ergotamine works for me (or at least it used to) but it has been taken off the market here. We also hae fewer triptans. There is only one other on the market that I haven’t tried.
My neurologist suggested Aimovig but as I have a problem with drug allergies (antibiotics) and anaphylaxis I can’t see how I can safely try it when you can’t do a test dose in any way.
Sorry for the essay and thanks for reading