Ongoing migraine issues

[BinkerTell]

I have been struggling with migraines for the last year and a half. I started getting vestibular symptoms followed by migraine pain in August 2022. My GP prescribed a preventative called pizotifen which reduced the severity and duration but had awful side effects (fatigue and weight gain).

Fast forward to April 2022, I was still having migraines but they had improved as Inhad started a strict tegimen of supplements at the beginning of 2022 - magnesium, feverfew, B2, B12 and COQ10.

I had also eliminated known food related triggers - cheese, chocolate and alcohol and reduced caffeine intake. Minimised other lifestyle triggers so ensured good sleep hygiene etc. I was struggling with severe anxiety.

I sought help for peri-menopausal symptoms as migraines are often hormone related and am now on HRT.

Things improved somewhat but I was still getting migraines so am now on topimarate as a preventative and only titrated up to the maximum dose 2 weeks ago.

In the last two months I have had six migraines, each of them lasting at least five days, some as much as a week. I run my own business. I am usually a very strong person who pushes through but I have reached the point where I can no longer cope. I have had to continue to advocate for treatment as my GP surgery was awful and in special measures and had to go private.

I am constantly making plans and having to cancel them, letting friends down. I am an unreliable business partner and leader of our team and I can't see any way out of it.

I am also worried that I have been misdiagnosed as this latest one shows no sign of going away and seems to be affecting my ability to think clearly. I have an MRI scan booked in later this month.

Does anyone have any positive stories to share about successful migraine treatment or suggestions as to what else I can do?

Have you tried sumatriptan?
I suffer with chronic migraines, sometimes leading to hemiplegic ones.
The only medication to ever work in my 15 years of suffering with them (and I'm only 30!) was Sumatriptan.
Unfortunately I was having way too many migraines a month for me to keep being prescribed them as they only like you taking a certain amount of those a month (I was given boxes of 6 for a month!) But I was exceeding this so had to stop.
You can take these along side a preventative. Sumatriptan usually made my migraines go within half an hour, fully. If you haven't tried them, I'd say it's worth asking.
I really feel your pain, migraines can be debilitating. I've recently got over a 9 day migraine. X

I have Propanolol daily and Sumitriptan for attacks and my life has been transformed in the last five years. I also knew all my triggers (caffeine, alcohol, extremes of temperature, low pressure, sleeping too much or too little, bright lights, smells like perfume and air fresheners ), as I’ve had them since I was three and they worsened with puberty and again with peri menopause . I find regular sports massages focusing on my neck and back helpful too.

You poor thing. Migraines are so miserable and debilitating.

It might be about finding the right meds for you. I've been on everything, and now I take propanalol twice a day as a preventative, and rizatriptin when I feel an attack coming on. This hasn't been a magic cure, and things are changing again as I hit the perimenopause, but this combo is definitely a huge help.

Botox.

It has a strict criteria for NHS referral but the cosmetic variety might also give relief.

I used to get debilitating migraines. Turned out I was coeliac and gluten was a trigger. Might be something to consider?

Propanolol works for me

Sumatriptan usually works for me.
I also find paramol (from pharmacy) helps with the pain - paracetamol or ibuprofen don’t help me at all.

pizotifen really didn’t suit me, piled weight on, I also had amitriptyline as a preventative but it didn’t seem to work.

Join the Facebook community - Chronic Migraine Awareness UK & ROI Support Group. You'll get lots of good advice on there.

Pizotifen worked well for me for a year or two at a time but caused terrible nightmares and I stopped being able to sleep well.
Topiramate was absolute hell on earth for me and didn't do much for my migraines either - be REALLY aware of the potential side effects as they can be very severe. Brain fog is the main one, but also kidney issues, hearing issues etc and be REALLY careful about not getting pregnant as it's well known for causing serious birth defects.

Are you taking triptans for the attacks as well as preventatives? MRIs rarely show up any issues for migraine but are always worth having just in case.

Get really well acquainted with the NICE guidelines for migraine treatment: cks.nice.org.uk/topics/migraine/. Be aware you'll not qualify for a neurologist referral until you've had 3+ prophylactic medications fail (i.e. clinical-pathways.org.uk/clinical-pathways/headache).

Keep a headache diary, it's really important.

Food triggers are often bunkum. Have a look at bucket theory - it's far more likely than a specific trigger each time, more an issue of the straw that broke the camels back.

You could also consider a private appointment at the National Migraine Centre in London - it's a charity and you can negotiate reduced fees if you can't afford it.

www.curablehealth.com/guides/mindbody-migraine-guide

Thanks for the replies.

I have tried sumitriptan - didn't provide any relief. Was recently prescribed zolmitriptan and only very mild relief. I can't take beta blockers, sadly, as I've heard they are effective.

Pizotifen made me gain a stone in 4 months which made me miserable!

I don't want this to be one of those threads where people suggest things and the OP says they've done that but I have done a lot of research, read all the NICE guidelines, had acupuncture, been to the dentist, the osteopath etc to rule out other potential causes.

I'm desperate for something that works.

How much water do you drink?

I used to have lots of migraines and hemiplegic migraines, syndol was the only thing to help actually (the one with the muscle relaxant, not the other weak version). Sometimes if it ran over 5 days I would need to try something else to break the cycle...naproxen or similar. Pizotifen was just too scary for me, I felt like I would never wake up!

Over the last 6mths I've drunk more water, as well as get the hormones under control with better diet (less sugar) and more rest generally. Water was definitely the game changer for me though...I was living on coffee before...and not being so hectic all day helped.

I get one now once in a blue moon, if I've left it too long to eat or if a random smell sets me off etc!

@Justwingingitox sounds like you've really been through the mill and I'm glad you've found something that works. A 9 day migraine is awful - how do you manage with work / family life etc?

@iRun2eatCake love your username! I have heard about Botox - I will wait and see whether a third preventive fails and I can get a neurology referral to get it on the NHS.

@Creativecake - it's not something I've tried so will give that a go when there are fewer temptations around in the New Year!

@GetOffTheRoof - thanks for signposting me to the Facebook group and the National Migraine Centre, will look into both.

It's comforting to know that you have all found drug combos that work for you eventually, it seems that it's a matter of trial and error.

I'm pleased you have an MRI scan booked. Are you suffering classic migraine, where the pain is localised to one side of your head by the temples? I find Sumatriptan to be the only medication to work for me. The other is migraine with aura, there is no pain in my temples but I feel like my skull is being pressured. I will sometimes see flashing lights and zig zags that's when I know I'm in trouble because sumatriptan won't always work with those migraines or they will take much much longer to have any kind of effect. I haven't yet found a preventative that works so good luck in your search.

Some triggers I know are:

Stress
Lack of sleep / too much sleep
Onions are evil (anything in the onion family)
Artificial sweeteners (I can only drink non diet drinks)

Although, a lot of the time, there really is no reason at all.

If sumatriptan isn't working for you (or at least some of the time), I'd definitely investigate further. I take the 100mg prescription, 50mg doesn't work.

@Valhalla17 I always drink a lot of water, probably more than 2l a day as a matter of course.

@bellamountain yes, always on the right hand side on my temple and right behind my right eye. Very occasionally I will get the aura too. I know that flashing lights will trigger one and weird low light levels. I also avoid artificial sweeteners and any processed food with lots of flavourings.

I had constant migraines for many months, cutting out all painkillers completely (no paracetamol, ibuprofen, naproxen, aspirin, sumatriptan etc which I was taking regularly for the pain) and taking none whatsoever for 2 months cured them completely. I have my life back now, I do get them occasionally, had one that lasted 3 days last week as I had a cold/flu virus, but they’re pretty infrequent now.

Make an appointment with a chiropractor and get him to check your spine alignment. The first appointment will be an assessment which may reveal something

@BinkerTell there are 7 different triptans. If one doesn't work, you should be put onto another. I used sumatriptan for 20yrs before it stopped working, the next two were rubbish. I now bounce between zolmitriptan nasal sprays and frovatriptan tablets.

I'm under neurology for Ajovy injections and they are life changing. I've gone from 27 days a month of attacks to 4-5 max.

Since I was 14 I've been through 7+ preventative meds and Botox. I've taken all the supplements, done every fad diet, every alternative therapy, bought every recommended device from ice caps (highly effective) to the clips for thumb webs (waste of money, don't stay on) to the Cefaly (£350, triggered cluster headache!). I've got both daiths pierced. I've bought dozens of pillows, new mattresses, changed room layouts, I sleep with the heating off at night. I've missed birthdays, parties, days of holidays, months of my life to migraine attacks.....

I must have spent tens of thousands of pounds over the last 25+yrs on prescriptions, treatments, therapies, diets - trying to find a cure or anything that would give me some respite. The only thing that works is Ajovy and triptans. Oh and ice packs. None are a cure though, just a way to survive this horrific disease of the brain.

@RedSnail - Wow, am glad that worked for you. I don't take any painkillers apart from the prescribed Tristan's I mentioned.

@GetOffTheRoof oh boy, I feel bad complaining about just a year of this when you have been struggling for so long. It must have been so hard to carry on at times and to keep trying to make progress towards a solution. I'm glad you've found something that makes your life more manageable. Thank you for sharing your hard one experience with me.

I'm really grateful to everyone - I feel a bit less alone now.

I th

My sympathies, @BinkerTell .

What is your topiramate dose? I didn’t start to get significant relief until I reached 300 mg/day in a divided dose. I also found that too little caffeine is as bad as too much: I do best with 2 or 3 cups of coffee, ending by 13.00. My neurologist said this is typical.

Practising good sleep hygiene, staying hydrated and minimising alcohol have also helped me but you’ve got those under control.

Exercise.

I’ve also failed several of the meds mentioned above. If these measures prove insufficient Botox will be my next step

My gran has said the same, first medicine she's found that helps after years of struggling x

I take amitriptyline as a preventer and it’s worked well for me. First couple of weeks I felt really wiped out in the mornings, but that wore of reasonably quickly (took it at 7pm to help it get out of my system by the time I’m needed to be up). I had to increase my dose a couple of times to get the maximum benefit, but that, plus HRT has really made a difference. Rarely get one now. I hope you find the right answer for you.

I had migraines from my early 20s, but they definitely ramped up in terms of severity and duration as I hit perimenopause. Have you only had them over the last year or two? I think I’d be asking for a referral if so, just to be sure if diagnosis.

I pay privately for Botox. It isn't a miracle cure but definitely helps. For me there isn't one magic cure unfortunately but lots of things which help. I have so far refused to take antidepressants or epilepsy drugs but may try them in the future.

A pp mentioned sleeping with the heating off. If I get too hot I will get a migraine without a doubt so I never sleep with the heating on, never have a hot bath/sauna/steam room/vigorous exercise. I have an ice cap which provides temporary relief and if I get to desperation point after more than a week then I fill a bath with cold water and force myself to submerge under it.

I take lots of sumatriptan. It's not advised due to apparent rebound headaches but I buy it online and take them when I need them. Eventually the migraine goes away and they help to get me through it much better than if I try to restrict the number I take. I've tried other triptans with less success. Apparently Frovatriptan works for longer so is good as a prophylactic if you know when you're likely to get a migraine, such as during the monthly cycle.

Syndol has helped sometimes but no other painkilller makes a difference for me, including naproxen, aspirin etc.

I sometimes take a sleeping aid to ensure I get a good nights sleep and don't get woken up by the pain. Usually promethazine antihistamine in tablet form or in night nurse. It rarely gets rid of the migraine completely but usually helps me to sleep better and dulls the pain and exhaustion the next day which is something at least.

Sorry for the essay, you have my sympathy.

Rizatriptan nothing else works for me worth a try at the very least

@BinkerTell it's a struggle. I have 3 sons. 9 7 and 2.5, I have the youngest home with me most of the time at the moment but he attends preschool for two mornings a week. I'm actively looking to get back in to work but will know I'll struggle if they don't calm down. And my DH helps massively in taking the odd day off when he can when they're really bad. As I'll be floored in bed!

It's really worth asking about Sumatriptan. It's highly rated by migraine sufferers.
I was also on amitryptline as a preventative but the timings just can't work out for me with the kids. It would knock me out and I'd run late into the school run times etc. And if I took it too early in the evening, it would knock me out before is ideal. So I came off them! Though they're also a good tablet.
I hope you find something that works- and that your migraine relieves itself soon. Xx