Migraine Care Struggles

[Skymningen]

This is going to be a long one, I am so sorry.

I have been having migraines since I can remember, definitely since I got a CT scan (nothing to see) when I was about 4 1/2 years old. In the beginning, my parents tried to get a better diagnosis and better care, which led to me trying out stuff like manual therapy or acupuncture, and being given "childrens aspirin" or the likes. Painkillers for children barely helped so every migraine was a torture of basically getting nauseous enough to throw up and then fall asleep when that made me feel better for a while.

When I got an adult, my migraines changed from starting during the day and including nausea, but being gone the next day to starting at night, more prodrome (yawning, fatigue, speech problems, but no visual aura) and lasting up to 3 days, or recurring the next day.

I finally got myself a prescription of Rizatriptan from a GP when I came in with stomach aches from taking too much thomapyrine (aspirin, paracetamol and caffein mix).

Two years ago I finally went to a neurologist, got frovatriptan and then sumatriptan as well as started prevention with metoprolol. This was all in Germany where I am originally from.

Now I have moved to the UK. I had a letter from my neurologist which got me a repeat prescription of sumatriptan, rizatriptan and propranolol (as an alternative for metoprolol) at my new GP.

The migraines aren't good right now, though. Now I do not have a neurologist to go to anymore, an appointment at the GP will be in more than 3 weeks. I have had migraines for all of last week. I thought it was gone today, but the yawning is back already. My family and partner are very worried, want me to get an MRI and accuse me of "not seeking enough care".

My average is 2 attacks a month, one stays for 2-3 days. Sometimes it is more (like last week). The attacks are not super bad (little nausea that I can cope with, triptanes do work for a while and enable me to not miss work, I can roughly function for the day if necessary). The prodrome is getting more and more annoying. Still, I feel like a migraine impostor compared to what I hear from other patients. No reason to be referred to specialist care or additional diagnostics I would say. But there is my family nagging me and the "bouts" of more migraine do slowly eat away my strength.

What care can I get though? Can I self refer to a neurologist (and how do I find one who preferably specializes in migraines)? Can I ask to get an MRI (to placate the family)? Do I just have to go to the GP (and how do I explain that everything was okay three months ago, but now I need better care)? Do I have "enough" migraine to go to a specialist clinic? I am honestly lost. Any help is greatly appreciated and thank you so much for coping with having to read this rather long "migraine rant".

[Zheikfields]

It's quite a terrible sickness you can think of happening to your worst enemies. Try and check for your triggers

As for me I know that intense smells , excessive stress, waking up too early than normal , excessive hunger etc. l started having migraines almost same age with you.

It got worse when it attacked as twice in a month. I thank God today it's a different story. Please learn to blend ginger add to your drink always . You will be quite amazed that your migraine will subside drastically

U may wish to call me on [phone] or chat me up on watsup same number let's talk

[tea_leaf]

In the UK there is a pathway your GP has to follow for your care. If you Google for "NHS migraine pathway" and your county name, it will come up. My advice is always to print it and take it with you to the doctor. It shows you are knowledgeable.

You will never get a scan to placate your family on the NHS, as they are rarely done for migraine as they are not needed. They are usually done where symptoms change suddenly or you get hemiplegic migraine type - to rule out TIA and stroke.

You can pay privately to see a neurologist, but you still need a GP referral to do this. You can ask your GP to do this, or you can pay privately to see another GP and ask them.

With not having been through the preventative medication routes, you will not qualify for a referral to neurology at present under NICE guidelines, as your GP can manage those with you.

Have a read of the options on the pathway and see what you've had and what you haven't first, then think what you want to do next.