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

@Horrace it's really tough but it's been for a good reason (having our child and then trying for a second, even though that hasn't worked out) - not sure I could have coped with it otherwise and my mental health definitely struggles under the pain sometimes. But there's light at the end of the tunnel knowing that I can soon start treatment again! I often use an ice pack too once the hat has warmed up - it lasts a lot longer so might also be worth a try if you haven't done so already?

Apologies. I haven’t read the whole thread. Ask your GP to refer you to the Headache team at the hospital. Normally under Pain Management. They will try you on all the beta blockers and be able to give you advice regarding magnesium and the “migraine cocktail” which is normally a very high dose of aspirin and a regular coke. This is taken in addition to a Triptan. The triptans are available in nasal sprays. Much more effective if you are vomiting. They will also advise on HRT. Sleep schedules are very important. No lie-ins on the weekend. Keep the same routine as in the week. I really feel for you. Migraines are miserable.

I agree with this, I have a sports massage every 4 weeks I also take migrasoothe it’s a vitamin B. Mine have dramatically reduced frequency. I am not sure they will ever disappear completely but going a month or so without one feels amazing.

Acupuncture massively reduced the frequency of my migraines. Discovering that fluorescent lighting was one of my triggers reduced them still further (and meant that I got my own office, which was a bonus).

I'm one of the lucky ones whose migraines have virtually stopped since menopause though, I rarely get one now.

You are right when you say you have to do the research. Gps generally are very uneducated in migraines and so are many neurologists. I use a cephaly device daily, have three monthly Botox privately in my jaw and forehead, I have monthly emdr. I take riboflavin, q10, magnesium, vitamin D, flunarizine, propranolol. I see a neurologist but had to pay for the first appointment to see him privately. I have reduced from 18-20 migraine days a month to around 6 days a month. I. Still hoping for some further improvement. I feel like the emdr which follows a migraine protocol has been the biggest help.

It’s very much trial and error to see what works for you. I also follow The migraine life on instagram and follow her programme. I understand you’re upset. At my worst I was so suicidal and full of despair that I warned my husband that I couldn’t do another year like that and to prepare for the worst. Fortunately I started to see some improvement. There’s always hope. 💐

https://emdrassociation.org.uk/

https://www.cefaly.co.uk/en/migraine-treatment-cefaly

I also find these cool caps really soothing.https://www.shoptherasoothe.com/

@KrisAkabusi what is your point? I don't know from that whether she saw a private GP or a private specialist neurologist. I haven't just not bothered to read the post. Topirimate which is what she's on at the moment can be prescribed by GP.

I suffered all my life, in the last few years I was getting 2-3 migraines each week. I saw an amazing specialist - took me off topiramate, stripped out all the painkillers, started me on candestartan. Since finding the right dose, I've been migraine free and am coming off the meds. It has been life changing. My consultant said she believes migraines are related to sleep - and I can look back and see the correlation. I would suggest ditching all painkillers, using a mouthguard at night, and seeing if you can come off the topiramate (this made me feel very groggy and brain foggy - standard side effects apparently).
Good luck!

Botox changed my life, I still get migraines but 1-2 a month rather than 3 a week. I had to be referred to a secondary specialist after the first neurologist said she was out of ideas and that I’m medically complex.

I get it on the NHS.

First, it's worth finding a neurologist who specialises in migraines. GPs often don't know the full details especially about the most recent medications.

Not sure if they are available where you live (I'm in the US) but I find these new meds very effective:

Nurtec (rimegepant) as both preventative and abortive.
or
Qulipta (atogepant) as a preventative and Ubrelvy (ubrogepant) as an abortive.

They're both expensive. I have health insurance that covers Qulipta + Ubrelvy so that's what I take. I did take Nurtec when I had different health insurance and that also worked really well.

I've been through most of the other preventatives people have listed on here other than propanalol or botox, and failed them all.

Also, just wanted to send a bit of a hug to you, as migraines really are so awful. I get 3-day migraines so I deeply sympathise.

/Migraines and coeliac disease

Just in case anyone reading this is interested. It's a small chance - but if you've tried everything else, it's worth knowing about. Many adults diagnosed with coeliac disease don't present with typical gastro symptoms.

Topiramate did not work for me at 100mg, I was on 200mg when it started working.

Given you have a clear pattern to your migraine, have you also looked at triggers and lifestyle?
Go to bed and get up same time, even at weekends
Have the same amount of caffeine, even at weekends
Avoid alcohol esp red wine
Make sure you have regular meals

Migraine likes you to have a very boring stable life.

The best thing I have done for my migraines is to see an Osteopath. It’s early days but my migraines are shorter in length and the pain is much less severe. He has also given me some neck exercises to do daily, but if I feel the start of a migraine, I do them and it seems to ward it off a bit!

He specialises in treating headaches and is really knowledgeable about migraines and triggers. He did tell me from day 1 that he probably wouldn’t be able to cure them completely, but we are working on finding all
my triggers and improving them for an overall effect.

Have you tried Botox? I tend to frown a lot naturally (not cos I'm angry!) and knit my eyebrows together causing tension in my forehead. I also grind my teeth at night. Botox in the forehead relaxes the muscles, causing less tension. I also get Botox in the side of my jaw so I don't grind. When the Botox starts to wear off, the tension and grinding comes back, along with the migraines. As soon as I start to feel a migraine coming on it's time to get jabbed up again! Works for me. Sumatriptan also works for me too, but I think you tried that. My SIL has tried CBT oil, which has helped her migraines, Haven't tried that myself. Good luck finding something which works for you.

I've definitely got them more frequently in my 30s. I find now that a sugary, caffeinated coffee can nearly always stop one (especially first thing in the morning) along with daily Magnesium Lycinate

Can you talk through how the migraine starts, what your triggers are - are you good at recognising them when they begin?

I get migraines but a lot less frequently now I've learned more about them (my mum is one of those "never been ill a day in my life" types and wouldn't take me to the doctor about them - or my debilitating period pains - because of that it just never occurred to me to ask? When I did, I was prescribed a couple of triptans (don't work for me) and just had a really thorough chat. For example, I didn't realise that migraines shut your digestive function down, so any medication you take after a certain point just won't work.

So - and I apologise if you've tried all this but I don't see where you've noted this down - I always keep paracetamol and ibuprofen in the house, in multiple areas, because the first sign of a migraine for me is cognitive decline with aura - i.e., I can't remember where anything is and I can't talk. So I have them in several areas. I take two of each, and then try and spend at least ten minutes with my eyes closed in a cool area. I'm lucky I work from home now, but if one strikes at work I've been known to take myself out to the car for a bit. A cold hat is good - but two flannels is better - one across my forehead and one on the back of my neck. If I do all this straight away, normally I can fend one off. If I can't it's awful and it's taking longer and longer to recover after one.

Over tiredness is a trigger for me, as is too much sugar, so stay away from those if it's the same with you. But I guess my take away is that prevention is better than a cure, so the second you start feeling it, take those painkillers and try and lie down with your eyes closed. Also - although sugar is a trigger (specifically, too much - like Haribo and cake washed down with a coke) when I'm on the downside, salt and vinegar crisps and a full fat coke really helps, almost like it's a hangover.

When was the last time you checked your working posture?

I have it bad when I have been bending my head forwards all the time away from its natural upright position (like, looking at a phone or laptop screen placed too low down, for instance) and in front of bright white/blue light (altered my apps to dark theme and got my glasses coated to reduce glare).

I also carry tension around my neck and upper back, so I am hunching my shoulders all the time (I have a sports massage to correct it and stretching exercises)

Once I cottoned on that this was part of the problem, things got a lot better - no alteration in meds needed. How are you sitting? Where is your screen? If you ask your body to relax and go floppy, which part is carrying the most tension? I still sometimes have problems if I don't realise that I have been clenching my jaw with tension, brings on a migraine that evening.

No, the maximum is 200mg per day. However, expect any side effects to ramp up. I was on that dose and it was awful. It wasn't working on my migraines either tbh!

Take a good read through the NICE guidelines and the Migraine Trust info and go back to the GP armed would be my advice.

They are single dose / single use so plenty of shelf life. You'll get a set number of them per prescription.

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

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

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 .

@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.

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.

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.