Triptans making the pain worse?

Since the vestibular migraines kicked in I have struggled to find anything that can deal with the actual head pain. When I had “classic” migraine migraleve would work, I could take a couple of those lie down in a dark room and three or four hours later I’d be ok. Since the change nope. The pain I now get is a lot worse than it was when I had the classic migraines and last many hours.
The neurologist I saw (briefly) warned me off any form of codeine, and I’ve tried various over the counter things, different triptans in various forms, and naproxen along with four different anti vomiting drugs, (none of which work) in the past I’ve found triptans have been at best about 50.% successful in having an effect on the horrible pain.
Zolmitriptan is the one I’m currently prescribed, the 5mg strength which is the strongest they do, it’s generally hit and miss whether it helps at all, and if it does it can take a couple of hours before I start to feel better, but recently, since I’ve been on the topiramate, I’ve needed to use it less often but when I have needed it I’ve felt like the pain has actually got worse after I’ve taken it not better- has anyone else experienced this?
I mentioned this to the pharmacist when I had my last review and he just said well if it’s not helping there’s no point taking it- but didn’t offer an alternative! - the pain can get horrendous to the point where I’m crying with the pain so I need something! Occasionally I give in and take the migraleve just so I can get some relief!

The topiramate is dealing with the day to day dizziness and nausea pretty well, but that was never for me the most difficult bit, the full on migraine attacks with the head pain was always the worst part - when I get to about hour 8 and I am just exhausted and the pain wont stop and I cant have any more medication but its no better, that’s when I would honestly jump in front of a truck if I could actually physically manage it. thankfully the topiramate does seem to make that happen a little less often, but it doesn’t make it less painful when it happens.

Have you tired the new CGRP? Ubrelvy or Nurtec? My co-worker uses Ubrelvy and it was a game changer for her.

14 posts were split to a new topic: The challenge of finding the right care?

Wouldn’t this make you a prime candidate for Ajovy/Emgality?

Alternatively as the Topiramate is only making those extreme attacks ‘a little less often’ maybe you have yet to reach your optimum dose. After all are you achieving anything like the recommended preventative success levels which should on average be 50% reduction in frequency, severity and duration? Different drugs but I found it imperative to achieve really robust control before approaching anything like normality.

On topiramate my life is definitely better, I was being affected 10-15 days a month in some way at its worst, whereas now it’s 4-5 all other aspects have improved, it’s just when I DO get the full on migraine headaches that no medication deals with the pain, and atm I feel like triptans actually make it worse. It’s the only aspect of this that the topiramate doesn’t help, the day to day dizziness, sickness, nausea, tinnitus isn’t as bad but the head pain I get when the attacks are bad hasn’t eased.

So sorry to hear you are having rough ride. “Screamer” migraines are unutterably terrible. It sounds like you’ve tried all the standard things such as triptans and Nsaid’s. I guess you’ve tried mixing various combinations of them as well. Have you tried nasal spray Zolmitriptan? I think it bypasses the stomach and gets to work faster than tablets and comes in a 5mg one dose strength.

I know doctors aren’t keen on codeine anymore as it’s an opiod and can become addictive and lead to over dosing but if you are just using it sparingly ( a couple of times a month?) and they control the prescription what is the beef? My 90 year old dad and his mates all seem to have ample supplies of GP prescribed high strength co-codamol in their cupboards (which they offer around)! Migraleve used to be my go to as well many years ago or good old paramax…

The only other thing I’ve been advised to do by a GP for severe migraine pain was to take a big dose of ibuprofen and paracetamol together (800mg ibuprofen/1000mg paracetamol ?? comes to mind) to act as a “bullet”. The downside was if it didn’t knock out the migraine you couldn’t take any more meds for hours.

I have had the nasal spray sumatriptan - it didn’t work- but not had the zolmitriptan- the only problem with the sprays is they will only let me have two at a time- so it ends up being very expensive, whereas I can get 12 tablets on one prescription.
I tend to try the zolmitriptan with 1000mg of naproxen and a domperidone. Like you say though- if it doesn’t work, or if I vomit (which I can do even with the domperidone) I’m pretty much stuffed! Sometimes if I feel sickly I will take 500mg naproxen so I can take more afterwards if I do vomit. I don’t use the codeine often- only when nothing else works, I’m already in a recurring pattern and I’m desperate for relief but the neurologist said it was the worst thing I could have as it causes rebound headaches- but like you I can’t see it will if I use sparingly. And it does seem to be the only think that gets me out of the recurring pattern sometimes.
Haven’t tried the bullet- may have to give it a go!

1 Like