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?

ive suffered since primary school and im in my late 30s now.
I currently take sumatriptan and found after a time they wernt working as well when needed. So i got referred to specialist. Took 2 yrs.

I then seen a chiropractor who reset my whole body and he advised having a sports massage once a month to begin with focusing on back, my neck, jaw ect as was super tight. So i started that and they take the tightness out of those areas that appear to trigger my migrains. The doc also prescribed me naproxin, the take with sumatriptan to help. Which works well now.......i now have sport massage every quarter as maintence and ive gone from weekly migrains where it would get me for 5 days. To a few a year for 2 days.

Mine weren’t as bad as yours but I was getting 1-2 per month which lasted 1-2 days each. I started taking one propranolol per day and that has almost completely stopped mine. I maybe get 2 a year now and usually triggered by exhaustion, dehydration/overheating or not eating.

Have you seen anyone other than the GP? They should be making a neurology referral for you if the limited amount of stuff the GP can prescribe isn't helping enough.

Propranolol changed my life. It does nothing for treating a migraine but it lowered my frequency from 2 a week to once every two months or so.

My sister is a long term migraine sufferer and has a riboflavin deficiency. Maybe look into that?

I went private, hence the MRI and latest change of meds.

You need a specialist. The list are probably long though. A friend has botox injections by a specialist to that hers

I am at my wits end. I feel I should just go in there crying and maybe they might take me seriously.
It seems that I have to do the research and not wait for the GP suggest solutions.

DP has had a lot of success over the past year with spending an hour every day in green light. Can't remember where she read about it but we figured it was worth a go.

Got a smart bulb for our bedroom, and she sets it to green for an hour before bed and sits and reads.

It's not stopped her migraines, but its massively reduced the length of them. She used to be like you and get them 3 days on the trot, but she's not had one last more than a day for months now.

I am so sorry. I have been there. My migraines spiralled out of control during perimeter until I was losing roughly half of each month to pain so bad that it frightened me and days of endless vomiting. I now take Candesartan daily for prevention and, when I do have an occasional attack, cyclizine and sumatriptan. Only once in 2 years have I had a migraine that didn't respond.
My treatment plan was worked out by a neurologist at The National Migraine Centre. It turned out that I was so terrified of medication overuse headaches that I was waiting too long to take my meds and also, I was waiting until I felt nauseous to take my anti-vomiting medication which meant the gastroparesis was already too entrenched and I just vomited the anti-emetic back too.
The cyclical nature of your headache could suggest medication overuse but it's highly complicated.
Do try listening to the Heads Up podcast, which is the podcast of the National Migraine Centre. It taught me so much about how to manage. Also, send them an email and ask for help. It's a charity. You can self-refer and you will be able to see a headache specialist (via Zoom if preferred). You may have a little wait but you have nothing to lose. I was given a comprehensive specialist report with medication suggestions which I took to my GP and they were happy to follow the prescription suggestions. It changed my life (and is it not an exaggeration to say that I was in so much pain so often that I was questioning how long I could go on). Good luck. Don't despair. There is help available.

I am taking pizotifen daily to prevent migraines, not 100% effective but so much more manageable now

Sorry my post should say during perimenopause not perimeter!

I'm surprised you haven't been on propanolol yet, I thought this was usually tried as the next thing after triptans as preventative medication. Anyway I've been on it a month and it's working wonderfully well so far. Also worth asking about dosage of any of the medications you are currently on.

I’ve found Cefaly good but you have to buy it privately- it’s not available on the NHS

Also, just to say that I learned, from listening to podcast linked above, that migraines are often triggered by changes in state, or routine. Therefore if you've been busy and stressed all week and then get to the weekend when you relax, the change of state triggers a migraine. Therefore it can be good to try and reduce those swings as much as possible. Apparently it's quite common to get migraines at the end of the week.

Beta blockers changed my life - atenolol, specifically. I never get migraines anymore, unless the conditions are extreme (so maybe one a year, when it used to be multiple a week).

My advice is to look at the side effects of topiramate and see if that fits with how you feel day to day:

www.nhs.uk/medicines/topiramate/side-effects-of-topiramate/

I was being tested for blood cancers and all sorts, but it was the bloody topiramate. Not once did the GP look at that, it was a neurologist who had me off it in a moment!

I was a complete zombie - couldn't wake up properly, couldn't think straight, looked exhausted (the photos of me from that period are horrific), I was on a PIP at work, my marriage was in tatters and all because I could barely function.

So I'd be back to the GP to ask to try another preventative. You'll need to have tried a few more before a neurology referral, but you could also contact The the National Migraine Centre as per a PP.

If your attacks hit on a Friday, have you looked at things like your posture no do you do something different on a Thursday or Friday that could affect you each week? For me, sitting looking down (like being on my phone, sitting at a desk hunched over papers for hours) guarantees me a migraine.

I had migraines all my life, they got substantially worse and more frequent with menopause.

I think there is some trial and error with medications to find the ones that help.

With menopause I started getting vestibular migraines they are absolutely awful. HRT helped with these. My GP will only let me have a low dose because of the migraines, but it's definitely helped. Daily magnesium also seems to help.

Amitriptyline is the only med thats worked for me as a preventative. Sadly it has side affects for me that I dislike (dizziness and weight gain), but every time I try come off it, the migraines increase in frequency.

I think you have to try a lot of things before you find the med that works for you. I tried loads before amitriptyline.

Came here to say this! I don’t have nearly as many as I did and they don’t seem to last as long since taking Propanolol. I did have to up my dose a few times but now I’ve found the dose that works for me it’s made a huge difference

(And the chiropractor- I would marry him at this point 🤣)

Topirimate worked for me. Took 18 months to get to the right amount of time symptom free before I came back down the ladder and that was almost 8 years ago and I am still largely symptom free.

If I do get a migraine now, I find pink migraleive, caffeine and a lie down does the trick.

Hang on in there.

@SandrenalsMyBloodType

I will try all of this.
Thanku

I know it's different strokes for different folks, but for me duloxetine changed my life. I went from having 6-7 migraines a month to maybe 3 a year (I took it for a year at high dose). I tried amitryptaline before that which didn't really help me.

Of all the triptans that helped me the most was zolmitriptan (nasal spray like you also take).

For me, light is a very big trigger, so being very careful with sunglasses and hats has helped.

I hope you find relief because migraines are the absolute worst!

Mine were hormone related, started in perimenopause and like you I’d have to spend 24 hours in bed in a completely dark room. I couldn’t keep any medication down as I’d vomit with even a sip of water. I’d be in so much pain I didn’t know what to do with myself.
HRT sorted them out OP, I haven’t had one for ages.
It’s miserable, I hope you find a solution x

I thought I would never be free of migraines and they blighted my life. I found I had a heart condition and put on medication to slow my heart rate down. Not had one in over a year. It was something I had no idea about and never thought could cause it. Try exploring every avenue as to what is causing them.

I feel your pain literally. I get 3-4 migraines a week and propranolol doesn’t work so now switching to amitryptaline. Have you tried tracking things like caffeine? Does your usage change over the weekend?