Triptan no longer working?
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
I understand your frustrations. I have had no luck with preventatives, either. And the only abortive my healthcare covers has only worked twice, other times failed to work, and twice worsened symptoms through serotonin syndrome.
Uft.
As for a "trial" dose, I do have a suggestion from experience.
I highly sensitive to the side effects of most medications. My doctor finally noted such in my records. So, now, we start with microdoses like those typically prescribed for children or the elderly. Or if the drug is bioavailible for long enough in the body, I take it on a delayed schedule (like every other day instead of daily).
I have been able to get positive theraputic response to these small doses with four medications that I could not get at full dose due to intolerable side effects. Full abatement of symptoms remains ellusive, but I get some relief without negative side effects or at least witb ones I can tolerate.
Also, whenever I get a new prescription I always make sure I have a sitter present when I take it the first time in case I have a severe reaction (past examples: temporary blindness, vomitting, and psychosis) requiring immediate treatment or monitoring.
I once knew a lady who arranged to take all first doses at her doctor's office.
These may be options to consider.
I wish you the best in finding effective therapies.
Hi mrchutney,
I'm sorry things are so rough right now. Let me see what information I can give you that may be helpful.
When one triptan doesn't work, there is pretty good evidence that a different one, or a different delivery system will. I can't take the pill form of triptans, but successfully (most of the time) use sumatriptan nasal spray. You may want to discuss this with your doctor.
Living with daily head pain is not easy. I wonder if it's time to seek out the expertise from a doctor who is more knowledgeable about migraine disease?
Wishing you a low pain day,
NancyThank you both for your suggestions.
I have a prescription for zomig, which is the only triptan available here that I haven’t previously tried. I have tried sumatriptan oral, nasal spray and injection but have never had success with it. Ergotamine worked much better but hasn’t been available here for years. So frustrating. Maxalt worked once and never again. Relpax was very reliable until now. I hope it becomes effective again or I’m in trouble.Unfortunately in Australia the best you can find is a neurologist with an interest in headaches (and I’ve seen them all in the city I live in - underwhelmed on all counts). There are no specialist tertiary centres for headaches like in the U S.
Hi mrchutney,
Thank you for the follow-up. My fingers are crossed Replax becomes available soon!
Nancy
