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?

I don't get them very often but when I do they're at the end of a period of high stress. It's to do with blood flow being reduced when I'm tense and stressed then suddenly released when I relax. I notice you get them at weekends, is your job stressful? If so, you need to reduce that stress during the working week, what happens when you have holiday? Also, I find massage helps the physical tension if i have them before it builds up too much.

Can you speak to consultant re Ajovy it has honestly been life changing for me - I used to suffer with about 10-15 migraines per month now I get headaches occasionally but have't had a crippling migraine for 3 years. I think you have to have tried and failed at least 3 preventative treatments to qualify for it. Also, be careful with things like Sumatriptan as the rebound headaches from that is sometimes worse than a migraine.

Is your blood pressure ok?
I had this - no pain relief worked and couldn’t leave the bed and I saw gp and I had hypertension crisis. Once I was out on blood pressure pills I felt so great and no headache at all now in last six weeks.

Just another avenue you could explore - do you grind your teeth at night? My migraines are far less frequent ever since I got a mouth guard from the dentist.

My blood pressure is fine. I've had it checked during the start of migraine and all good. I don't drink alcohol ever. I drink one espresso when wake up then water the rest of the day.
I know I don't exercise. I'm at a desk all day. Prob spend too much time on phone mumsnetting.

Having been admitted with migraines and given morphine, I totally sympathise.
The neurologist prescribed soluble aspirin 900mg + Stemetil, nothing else was working.
It’s working well so far 🙏

I've no idea. What would be the signs, other than migraine 🤣

I had migraines every few weeks that I put down to perimenopause. I was diagnosed with coeliac disease and when I stopped eating gluten, my headaches stopped. I've not had once since March and that is when I stopped eating gluten.

It's one more thing to rule out at least. It's a simple blood test initially.

Sorry you are suffering so much.

No advice, just want to say I'm in the same situation. I'm 61, post menopausal, have had worsening migraine since my early 40's.
We have no life; can't plan anything, can't go anywhere.
Mine also appear to be drug resistant. I'm housebound two or three days out of every week, struggle with nausea and my weight is 7st 10lbs currently.
Ended up in hospital with stroke symptoms in January, they concluded it was Hemiplegic Migraine and sent me home without a scan.
My anxiety makes things more complicated with regard to treatment.

There is a possibility that my issues are linked to having scoliosis, the only thing that ever gave me any respite was a few sessions of cranial work from a physio, after which I didn't have a migraine for three months. Unfortunately, the person who treated me changed location and I have been unable to find another practitioner that can visit my home. It is also difficult to afford treatment privately because I am unable to work due to the severity and frequency of the migraines.

Sorry this is disjointed but I'm on day 6 of a migraine/nausea cycle.

I hope you are able to find some answers soon.

Cranial physio or osteopathy may be worth investigating if it is something you haven't tried.

I had to beg to come off this. I ended up under Audiology because I was having hearing problems. After an MRI where Audiology decided it wasn't related to my neurological problems, he came to the conclusion that it was the Topiramate. It worked but I struggled with the side effects.

I found cheese was a trigger. I'm ok now as long as I don't eat too much

The only thing that worked with me after having migraines for four years (one or two a week) was Propranalol. Its a beta blocked prescribed by my doctor. I had it and never looked back. Never really had a migraine since. I had hurt my neck and shoulder with a whiplash type injury and I think this is what caused the migraines.

Try other preventatives - propranolol, candesartan, pizotifen. Keep a very regular sleep pattern, avoid over the counter painkillers (frequent use commonly causes medication overuse headache). 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 - so that needs a review. (crap but that decision is from MHRA not the doctors).
If multiple preventatives don't work (and all can take 6-8 weeks to work) ask for a neurology referral.

Lots of you saying Propranalol.
No GP has ever suggested this to me nor the neurologist.

I am also a chronic migraine sufferer and have had great results from using medicinal cannabis
you do need to go private, the consultation was around £50 and then I buy the oils and edibles
the frequency has reduced so much and if I do feel one starting I take the high strength oil which allows me to sleep and wake up pain free!

Acupuncture completely changed it all for me.
Clinically recommended by NICE.
Would need a few sessions to work. Worth trying to look for a multi-bed clinic if costs are an issue.

Sorry, what? I'm under 55 and have never taken contraception and I take the highest dose of topiramate.
I don't understand any of this

What happened with the sumatriptan?

I have also been through all different meds. At one point I was experiencing a migraine twice a week. Since they used to last up to 3 days, I was basically always suffering.

They've got better thankfully. No idea why. Maybe just entering perimenopause!

Anway, the best thing for me was sumatriptan. It never worked straight away, sompeople.can sometimes not think it works. However, always without fail, sumatriptan would kick in at the 2 hour point and bring me relief from the headache and vomitting. Occasionally, if I'd left it too late, I'd need a second dose and to wait another two hours. However this always worked for me.

I ended up taking too much because they worked so well and ended up with rebound headaches. But given the pattern of yours, would it work if you took a sumatriptan tablet when symptoms first start to come on, on a Friday, and take another in 2 hours time if the first dose hasn't worked? Give it 2 hours to work or 4 if you need a second dose.

Amitriptyline didn't work.for me, just made me exhausted all the time!

Topirimate made me feel really weird!!

Going back to sumatriptan and not using it more frequently than once a week has been the only thing that's worked and now my migraines have reduced

I was going to mirror some other posters - yours seems menopause related, I would sincerely look into HRT if you aren't on it already.

I have chronic migraine plus chronic cluster headaches. had them for decades.

In honesty you need to push for a referral to a hospital headache clinic that specialises in migraine. A local neurology department may not offer that.
I suggest contacting the Migraine Trust for support and advice to help you steer your GP so they actually make a referral.

Keep as in depth a migraine diary as you can so when you do see a good neuro they have the info to work out what type of migraine you may have and what may be the best way of managing it.

Your GP should be following both the NICE guidelines on migraine management and also the BASH guidelines set out on managing primary headache disorders.

A hospital can offer far more options than a Gp such as botox, nerve blocks and off label use of drugs that they have seen help with the more complex and difficult to treat forms of migraine.

Given your at that age (I know it’s a horrible phrase) try and keep tabs on your blood pressure between migraines as migraine pain can do weird things to blood pressure.

I see my hospital neuro every three months and whilst this may not be the success story you had hoped for the treatment they offer has moved me from 24/7 migraine to 3 days active and just bad headaches. That has significantly improved my quality of life and I can now do some things. It’s worth persisting in pushing for a referral even if you have to wait.

The Migraine Centre in London might be worth looking at if you can afford it and can travel to it.

Speak with the migraine trust about migraines and work then Human Resources at work about what resources might be possible under reasonable adjustments. Sometimes it’s the lighting that builds up over the week and sets off weekend hell.

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.

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

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/

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.

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?

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.