Fellow Migraine Sufferers - Advice Please. My life is feeling pointless

[Horrace]

I've suffered from migraines for the past 6 years. I'm 52, periods almost stopped. No menopausal symptoms really other than memory loss but that could be stress.
The past year I seem to get a migraine every Friday and it lasts 3 days. I can't get out of bed due to the pain.

Over the years I've tried the following:
Amitriptyline
Naratriptan
Sumatriptan
Cyclizine for sickness

I've had and MRI all good.
Currently I take
Topirimate
Zolmitriptan nasal spray
Buccastem for sickness

I work Mon to Fri. Then I end up in bed all wknd. I have no life. I can't plan anything. I can't go out with friends. I need to care for my parents but that's difficult as I'm too sick to leave the house.

I'm sick of going to the GP. I went private, hence the MRI and latest change of meds. But it's getting worse.
Has anyone had any success stories?

Propranolol didn't work for me at all. Made me feel v odd. I didn't like it!

@Horrace I'm sorry you’re suffering so badly. Fellow lifelong migraine sufferer here.

A PP mentioned Ajovy. Here’s what the National Migraine Centre says about this new treatment:

Anti-CGRP medication
A newer type of medication that targets a particular chemical neurotransmitter called CGRP, these drugs have received a great deal of attention in recent years. Research has shown anti-CGRP medication can greatly reduce the frequency and severity of migraine attacks for many.
This new class of drugs has been shown to improve symptoms in up to 60 per cent of people with chronic migraine*.
At the National Migraine Centre, we can consider patients who experience four or more days with migraine each month for anti-CGRP treatment.
Clinicians can prescribe a number of injectable anti-CGRP medications, including Ajovy, Aimovig and Emgality.
More recently, oral anti-CGRP medication has also arrived in the UK, which is available in tablet form and can be taken both to prevent migraine and also as a treatment when an attack begins. Both Vydura (rimegepant) and Aquipta (atogepant) can be prescribed via the National Migraine Centre.

I can recommend the NMC; I saw a wonderful specialist there who was very, very thorough and knew the subject inside-out. You do have to pay (they’re a charity but they ask for a donation) but they can give very targeted advice tailored to you. I’d say they’re definitely worth considering to see if this sort of treatment could help you.

Whether you do see them or not, their website is very informative:

Can't take HRT because of migraines apparently

Topiramate is a tetrogenic, meaning it is likely to cause serious birth defects in any pregnancy. Even though my DH is 100% infertile, they wouldn't let me take it without additional contraception for me.

Propanalol is usually the first line in migraine prevention medication because it's so cheap. It's not always suitable for everyone though, such as if you're asthmatic. It also did absolutely nothing for me. Pizotifen was good for a long time. Amitriptaline sedated me too hard and I couldn't get past that so had to come off it. I'm now on Aimovig injections having also been through Botox and Ajovy.

Have a read of the clinical guidelines for migraine and see what you've tried and what's available to you:

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

I have to be very careful with HRT, a low dose keeps my migraines under control, anything above the lowest dose possible does trigger migraines. But it's definitely worth a try... it's been a life saver for me.

That's untrue. https://migrainetrust.org/live-with-migraine/self-management/migraine-and-hormones/#:~:text=Hormone%20replacement%20therapy,-Hormone%20replacement%20therapy&text=Having%20migraine%20does%20not%20mean,your%20body%20time%20to%20adjust

In addition to the migraine, worn down teeth (your dentist would see it straight away) and pain in your jaw.

This was my first thought when OP said every Friday. Working on the stress levels during the week could help massively.

Lots of advice to consider. Thank you so much everyone.
And sympathies to all fellow sufferers. It's bloody awful and most people don't get it. It's so much worse than headache.

There are seven different triptans - if you don't get on with one, try another. They all work slightly differently including in different preparations.

Sumatriptan used to knock me out in tablet form, but not in nasal spray form.

Not sure what trials there are now, would be interested to know, as botox has been available on the NHS for chronic migraine for well over a decade. It's not a new treatment.

I thought the same but HRT is different to contraceptive hormones - also if your migraines started primarily during a period of dwindling hormones, it does sound like replenishing them may help you. They can't get any worse by the sounds of it and you can always stop if it does happen to! It's definitely worth a shot.

DD had a daith piercing and that has reduced hers to a couple of times a year.

I have been really lucky to have got a referral to neurology and our hospital have a migraine specialist that I see, he does injections of corticosteroid into the muscles and in the long term its the only thing that really helps my pain. He does have a private clinic but works in the NHS too. Before the referral I had tried so many things but this makes a difference, it doesnt cure it but it helps so much.

I dont know if accessing a specialist is an option but its worth asking for a referral if you can get one as they may have other options.

I have chronic migraines too (c. 25 days a month) and it's hard. I have been off meds for a few years now as trying for a baby but due to restart Emgality injections in December as we haven't been able to conceive. If you meet the criteria for the CGRP inhibitors they are amazing. I agree with PPs that you likely need to see a neurologist and that the NMC/migraine trust sound like a great shout too. It might also be worth tracking your migraines with the Migraines Buddy app - I find it very useful as I can just print out a report every time I have to see the neurologist instead of trying to remember how bad they've been and it can help you spot patterns you might not be aware of. I used the free version and find it has more than enough functionality to be helpful. Over the years I've been given Topiramate, Amitriptyline, Propranolol, various triptans, Naproxen and have had lots of alternative therapies including osteopathy, acupuncture, massage, TCM, a daith piercing and countless others. Nothing helped. Most recently the specialist gave me Botox and nerve blockers which have reduced the frequency from 30 days a month to 25 but otherwise haven't helped much. I find generally that the zomig works well but I can only take it for 10 days a month because of the risk of rebound headaches (I believe the rebound limit for paracetamol is 15 so worth checking whether you're over these figures). I sometimes take both paracetamol and naproxen together at the very earliest signs and that sometimes helps to nip it in the bud too. I think understanding and managing your triggers is helpful but takes time so isn't an instant fix. I also find that regular exercise (when I can manage it) makes a difference as does eating healthily and getting enough sleep - all basic things but hard to do when you're ill all the time. I have a 'migraine hat' which lives in the freezer and is quite helpful as well as ice packs which are lomger lasting than the cap/hat so that might also help if you don't already have something like that? All that is to say I'm so sorry you're having to deal with all this and really hope you can find something that works for you soon. Sending you lots of solidarity and wishing you all the best.

I was told no HRT because of migraine, I was also advised against having any Covid vaccines.

I feel for you if topiramate isn't working for you.
It took me 4 weeks of total brain fog, couldn't hold a thought in my head, to get used to them.
I'm glad I did, they definitely work for me.
I'm assuming your neurologist told you about cutting out the C's? Caffeine, claret (alcohol) cigarettes, codeine (works the day you take it but usually comes back with a vengeance) cake (crap diet) etc?
I too have trouble with my jaw clenching, tinnitus and shoulder pain.
Recommend regular massage, deep tissue or sports if you can afford it.
You may get on with chiropractor, I prefer osteopath, gentler therapy I find.
Another thing that helps is standing in the shower (I find as warm as I can stand works better) and aiming it on the top of my head. In the dark is quite nice 😊
Good luck with finding a fix, migraine is a terrible affliction 💐

@HappySquid
I can't believe you have 25 days a month of it 😫. I thought I had it bad.

I do have a cold hat in the freezer. It does help a bit.

Not being funny, serious question: How do some of you manage to eat? I just feel too sick most of the time and can barely get my weight up to 8 stone.
I've had anti nausea meds on and off but still can't eat normally.

I'm on my 100th migraine day this year, but I can see it is far worse for some of you, and I'm so sorry for you. What you have to endure is jut horrendous.😞

I’ll ask - she’s been on it for a long time so perhaps she was initially part of a trial and now they just keep I touch with her for long term data. She used to have multiple migraines a month that left her bed bound for days, vomiting etc. now she still gets a few headaches a month but her strong prescribed painkillers tend to get rid of them. It’s made a huge difference to her life.

Scopoderm patches for sickness. Much better for me than the tablets. Genius suggestion by the GP's pharmacist. Ideal for my cyclical vomiting attacks, I can leave them on for a couple of days.

@Horrace the thing about migraine is you do keep having to go back to your GP but there absolutely is a treatment out there for everyone.

You need both preventer and reliever. I would guess your neurologist has told you not to take more than 6 doses a month of your reliever, the triptan or you get overuse headache - I've been there, it's the pits, you basically have to go cold turkey.

In terms of preventers there are lots but you have to keep trying one, titrating up, if it doesn't work try the next.

For me this looked like:
Amitriptylline - didn't tolerate
Topiramate - worked but didn't tolerate
Propranolol - couldn't have, low BP
Candesartan - couldn't have, low BP

This got me to the magic place of having tried and failed 4 preventers and so eligible for NHS Specialist Headache Clinic.

Tried Botox - amazing but not a miracle

So finally got Aimovig which absolutely is a miracle.

But you have to keep going back, your GP will just assume you are fine unless you keep pointing out you are not.

And you can have HRT with migraine - I found every time I had a hot flush, I got a migraine, so was straight on the HRT.

There’s a new couple of new ranges of medication that’s been out a few years anti CGRps and gepants which are worth trying . I know you’ve seen a private neurologist but I’m not convinced they’re great ( given they don’t try you on propanonol or similar as they’re standard treatments ) I’ve been going to the National Migraine Centre in London who are fantastic . I’m not cured but better than I was .

I've never been told about different forms! Does the nasal spray have a decent shelf life once opened?

Hi, OP -

As a fellow migraineur I am very sorry about your situation.

Firstly, the Topiramate: you probably know that it is the Marmite of migraine medications. It works well for me, but I am not a large person and my neurologist had to take me to 400 mg/day in 2 doses before it started working well. I am now on 300 mg/day. Luckily with few side effects. It has cut the frequency of my episodes by perhaps 90% and cut the intensity by perhaps 75%

You said you are on the maximum dose, but I have seen literature where, for migraine, this is said to be as low as 100 mg/day. That wouldn’t touch the sides for me. So please don’t think I was doubting you, but if you are okay with Topiramate and not at 400 mg/day perhaps you might think about increasing the dose? Slowly! My neuro felt strongly that going slowly gives the best chance of minimising side effects.

He also outlined a treatment ladder in case the Topiramate and some lifestyle changes - sleep hygiene, strategic use of caffeine, etc - did not work. Botox injections were on the ladder and I remember him saying how effective he was finding them.

This was an NHS neurologist at a specialist hospital, BTW, with a referral from my GP. I think you deserve the same, although I suppose the NHS is in such a bad way that migraine along with endometriosis, crippling arthritis, etc, could be beyond its current capacity. (I am now maintained by my GP but I made sure to get an open invitation back to the Migraine Clinic in my discharge letter)

I was also struck by your age and by the rhythm of your migraines. I think PP discussing ‘changes of state’ are on to something and wonder if you can figure out what it is. Also your comments about HRT are contrary to my (very limited) understanding. Gently, is your GP older? Are they a sole practitioner or could you make an appt with a younger doctor in the surgery?

Very best wishes