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

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 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 💐

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

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 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.

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

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.

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.

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.

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

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

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

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.

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/

@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:

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

one word of caution, if you get aura and bad migraine speak with a headache specialist about possible use of HRT. If you are sensitive to hormones it could aggravate rather than help.

My migraines were caused by hormonal changes due to menopause. I tried propanolol but as I have low blood pressure they didn't suit me. I just felt like I was going to faint all the time.

I'm now on a very low dose of HRT. I take it daily and it has closed them right down. I do still get them but they're rare now instead of thick and fast, like yours.

Maybe HRT could help you too?

Since earlier this year I was suffering 2-3 a month, horrible symptoms including nausea and often bed ridden. They were becoming so disruptive for work my GP prescribed Sumatriptan but it didn't do much for me. Anyway, I started a diet earlier this year and started taking electrolytes and I've not had a migraine in 6 months, not one! I spoke to my GP and they said it probably wasn't the electrolytes but me drinking 2 litres of water a day. I still can't believe its that simple but I am migraine free and I take a lot of care about drinking that much ever day.

Topiramate can cause birth defects, that’s why contraception should be used.

Topiramate has been linked to a small but increased risk of birth defects for your baby if you take it during pregnancy. Children born to mothers taking topiramate may have an increased risk of learning and development problems as they grow older.
If there's a chance you could become pregnant while taking topiramate, your doctor will enrol you on a pregnancy prevention programme.

https://www.nhs.uk/medicines/topiramate/pregnancy-breastfeeding-and-fertility-while-taking-topiramate/

My mum has the botox injections too (I think she's part of a trial) and they've made a big difference to her.

I'm 43 and have taken migraines since I was 12. I didn't get propranolol prescribed or even suggested until a couple of years ago. I've recently upped the dose but it has made a massive difference in the frequency and intensity. I've stopped taking the sumatriptan for the symptoms because it makes me feel so groggy and sleepy. I take 2 anadin extra tablets if I have a migraine starting.