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?

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

@poetryandwine
I'm on 100mg a day of Topiramate and have been told it's the maximum dose.
I will ask about a increase.

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.

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.

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.

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

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.

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.

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.

/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.

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.

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.

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!

@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.

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/

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.

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.

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.

@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?

Hopefully your GP has flagged this already, new regulations are that women 55years and under have to be on highly effective contraception to take topiramate

I was just on this and my DH having had a vasectomy was acceptable?

I take candesartan (sp?) per the neurologist. I have asthma so some migraine medications are off limits.

You could consider working Mon/Tues and Thursday/Friday as I find that if I over do things, I trigger a migraine. I tend to get two a week, but sometimes I am able to shorten them by noting when I am feeling low energy and a bit brain foggy that I need to stop and rest. Perhaps you are pushing yourself too hard?

I don’t think it is coincidence that working 5 days in a row then causes a 3 day migraine. Having a day of rest in the middle might work better, even if you have to work 10hr days instead of 8hr days so you are still full time.

Im on the new gegant- Rimegant/ Vydura. Is just been licensed for every other day and has made a massive difference. They will prescribe it after three other preventatives. Worth asking about (not all NHS trusts will prescribe).

Riboflavin vitamin B2 400mg a day.
It's in the NICE guidelines but no one ever suggests it. Reduced my frequency hugely. Had no side effects.
I find orodispersible Rizatriptan the most effective when I have one. I take it on an empty stomach with caffeine. Then take and anti inflammatory after to help reduce rebound headaches- ibuprofen or naproxen.

This has all gone out the window currently as I'm breastfeeding and can't get any reassurance on what's safe to take.

I haven’t read the full thread so sorry if this has already been mentioned but I’ve found that mine were related to deficiencies. I had similar migraines to you it sounds like, they were always on a Friday eve or Saturday morning, lasting three days and then making me feel like a zombie for a few days afterward, vomiting with it too. Anyway, someone on another mnet thread recommended a vitamin supplement called dolavont which is made specifically for treating migraines. I was sceptical at first but thought why not try it, I’d exhausted all other treatment. But they worked and now I have around one migraine every few months. Just before I started taking them I actually was diagnosed as having iron and b12 deficiency so as well as the dolavont I’m also on iron tablets and b12 injections. Not only have the migraines all but gone I feel a lot healthier in myself.
Another piece of advice I got from the same thread was to take aspirin at the start of a migraine attack. When having a rare migraine now I take anadin extra as it’s aspirin plus paracetamol and I take it with a fizzy drink as that also seems to help. It works a hundred times better than sumitriptan or any of the other migraine medications.

It’s called dolovent sorry. Expensive but worth its weight in gold for me.