Migraines - what can I ask for?

[TigerRag]

Getting so frustrated with this now.

Have had migraines on and off since I was a teenager and have been on medication for 10 years now. I can't take certain medication due to my undiagnosed lung problems.

Was on Cerlle and now currently on the depo injection. Came off Cerelle after a 3 week period and was finding that I was getting migraine at the start of my period. I've been switched to the depo injection and still having the same problem. Have been advised it can take up to 6 months for it to work. I've been advised that my only other option is the coil.

Struggling to also find a daily medication and preventatives that actually works and doesn't give me side effects. I've tried Topiramate, Amitriptyline, Nortrypline, Pregabalin and Gabapentin. Pregabalin has stoped working again. Topiramate is the only one that worked but the side effects are awful.

I'm now trying to find another medication that stops them. I was given a nasal spray (because it works quicker) of Sumitriptan. But I kept getting sinus infections. I'm currently on Maxalt and it's not working.

I've been under neurology who were useless. I also found out that they've hidden a diagnosis from me. (I found out from my eye doctor that I have Agenesis of the Corpus Callosum) They gave me Pregabalin and advised against Topiramate because of the side effects. I managed 7 years before deciding that enough was enough.

I think I'm now running out of options. But is there anything else I can ask for?

Ask to try Propranolol as a preventative and Sumatriptan injections, they are far more effective than tablets/nasal sprays, come as self-injection pens and start working within five minutes.

Lots of things.

Ask your neurologist about Botox injections and the new CGRP monthly injections for prevention.

For abortive, there are 7 different types of triptans and they can be given as tablets, nasal sprays and injections.

There's also a specific protocol for hormonal migraine which usually includes taking triptans on set days in your cycle. Any GP or neurologist should be familiar with this, but just in case:

cks.nice.org.uk/topics/migraine/management/adults/

Fremazunemab (spelling may be off) brand name Ajovy is working wonders for someone I know but they were on a trial, not sure how widely available it is yet.

Just seen you're not under neurology any more - you need to ask for a referral ASAP.

If you can afford to pay privately for a consultation, the National Migraine Centre is a good place to start: www.nationalmigrainecentre.org.uk/

I've been on Ajovy for a year on the NHS. It's widely available now in the UK but it's still a postcode lottery.....

It's a monthly injection.

How are you finding it?

Absolutely life changing. I'm classed as a super responder - I've gone from 27 days a month of attacks to 4-5 max.

Botox halved my attacks but I was still well into chronic numbers.

That's amazing. The person I know is also a very good responder, I really hope it becomes more widely available for people. My father suffers awful migraines and I've been very fortunate not to but have seen how debilitating they are.

Wondering if I should try Ajovy in addition to everything else I'm on, it sounds great.

Propranolol was suggested and I asked if I could take it. I was told that I could. But those of us with lung conditions (mine doesn't have a name) or Raynauds can't take it.

I didn't ask for it to be prescribed because I was concerned about the breathing related side effects which the doctor wasn't too concerned about.

Thanks. TRiptan has been changed. Still on Pregablin though. She kept suggesting things that I've already been on.