Migraines are ruining my life

[bryceQ]

I am 36. For the past 4 years or so I have suffered debilitating migraines. From a couple a month to multiple days a week. I am a carer for my disabled child and have a lot of responsibility I can’t change.

i have tried propranolol, botox, piercings, acupuncture.
I dont drink alcohol, drink decaf coffee, loads of water, healthy diet.
have been on pill / not on pill.
practice yoga & mindfulness

i rely on sumitriptan but even that doesn’t always stop them.

I feel utterly desperate. Like I am losing all my positivity.

what else can I do?

I didn't find any difference after taking any supplements and I tried quite a few. Multiple preventative meds did nothing. Pizotifen did help, probably halved the frequency. The game changer has been hrt. After 10-20 per month on average, I only had 3 last month!

I still can't drink alcohol (well assumed, not worth the risk trying) and have to go to bed and get up at the same time every day. Low blood sugar and dehydration are also big triggers.

I hear you OP trying to carry on through a migraine attack is just the pits. I have had them for many years. Have you had your back checked out by an osteopath? They found I had a problem in my hip that meant the nerves were being aggravated after doing certain things like lifting children into car seats etc or if stressed my muscle tension would aggravate it too because of the twist in my hip. Probably caused by falling off a gate as a kid. It’s definitely worth getting checked over just incase

I have had a permanent headache for 3 months, I’ve never suffered from migraines at all. I’m 46 in a stressful job. My upper back, neck and skull are rigid like you’ve described. A chiropractor has helped with the upper back but the neck and tightness over my skull is not shifting. I’m seeing a head pain specialist privately in 2 weeks to try and get some answers and relief. NHS lists are so slow. Wishing you luck and showing solidarity, it makes you so miserable 😞

I have found that osteopath can help as part of the treatment but it never got rid of mine.
Supplements never helped me at all despite trying lots of them for a year solid. Food allergy testing didn’t help. I went to the dentist and got a night guard that didn’t help. Changed my pillow, my diet, my glasses, nothing helped. I was put on every preventative medication over the years and the only one that helped was propranolol which got rid of them for several years until I hit perimenopause then they came back with a vengeance.
I was then stuck with migraines until I got put on the new medication prescribed by a neurologist called atogepant and it’s been life changing. I’ve only had to take 2 triptan tablets this year so far. I still have to be careful to avoid triggers such as hunger, thirst, flashing lights, tiredness but this triggers a headache now not a migraine.
i actually feel hopeful for the first time in years that I can have a good quality of life.

Sorry to interrupt the thread, but for those of you recommending atogepant. Does it make you tired?

Both amitriptyline and pizotifen exhausted me to the point of being unable to function properly. Sumatriptan work but I still need to avoid a lot of situations to not go over the 12 per month max.

Thanks

No it doesn’t in my view. It gave me a lot of nausea to begin with so I had to take a half dose for several weeks until my system got used to it. But no tiredness. I have been on so many different medications for migraines over the years and this is the first one with no side effects that I’ve tried.

Meant to add the two drugs you mentioned were the absolute worst for fatigue in my opinion. I couldn’t even get out of bed some days when I was on them. The fatigue was something else

I started getting migraines in my 30’s and they were definitely linked to my hormone cycle. Sumatriptan was rubbish but it’s the first one they always prescribe. Definitely try different triptans until you find one that works for you. I take Almogran.

Also, a previous GP suggested I try taking a good quality feverfew tablet daily and after about 6 weeks, it had built up in my system and made a huge difference to the severity and frequency of my migraines.

Honestly, I didn’t expect it to but it definitely improved things for me enormously. Give it a couple of months to work and I hope it helps you too.

Thanks Susie, I might ask my GP if I can try it.

Second this. I had horrific migraines in my teens and 20s. Hormonal. Went on pill (BCP) and one of them caused migraines so had to change it. When off pill at 30 they went.

Bastard hormones eh? Men don’t know how lucky they are.

You have my sympathy OP. I’ve suffered really badly for over 25 years now.

I have Botox every three months at my Neurology department at my local hospital, that makes a huge difference.

I also carry Rizatriptan melts with me everywhere I go and at the first sign of a migraine I take one.

I have had chronic migraine for years and years, have tried most treatments mentioned and also have EDS (high degree of crossover). I was taking painkillers every day and triptans several days a week, which was making things far worse.

I am currently cold turkey which has made a real difference, but is tricky as just getting my period and would normally have high dose codeine/tramadol to help manage the pain (can't take NSAIDs).

Honestly, I wake feeling OK, am not continuously triggered by things throughout the day and if I do have headaches they're a 2/3 out of 10. This was recommended to me by the National Hospital for Neurology - who diagnosed me with chronic migraine/medication overuse headache and atypical trigeminal neuralgia.

if you're not taking meds 3+ days then ignore me (but do keep a diary) but I've found taking no pain meds most of the time, 25mg amitriptyline nightly and then a multitude of supplements (including riboflavin, magnesium, star flower oil, omega 3) is giving me a much higher baseline than before.

I also had to try several triptans, I find zolmitriptan works well.

Good luck

Have you ever:
1.gone to a headache specialist?
2.tried a migraine forum instead of a general forum like this one?

https://migraine.com/forums?tagId=1537&tagId=1523&page=1

https://www.bezzymigraine.com/

I agree with this. My triggers include hormones, especially when progesterone drops just before my period. I've had migraines since mid-20s and am more or less used to how shit they ard at age 45 now. Fortunately, being in the throes of perimenopause, mine don't seem to be any worse, but I can't take triptans at all so I really have to rely on avoiding triggers now.

My triggers usually also include stress, dehydration, low hormones or low blood sugar.

I remember when I had a particularly awful one when out once, I tried some mefanaemic acid medicine that seemed to work well too. Plus lemon and ginger tea, flat Coke or acupressure on the back of thd neck helps a bit too.

So sorry, it's definitely awful. You have my sympathy.

Rebound headaches & migraines from overuse of painkillers and triptans is a thing. I know because I take painkillers every day just about (allergic to Ibuprofen and aspirin so it has to be codeine / paracetamol) - to treat headaches and keep migraines at bay. But I’m pretty certain they’re causing me to have migraines too.

My migraines are beyond awful - excruciating pain and 24 hours of severe vomiting - so I feel like I’m trapped in an endless cycle of medication overuse - I will do anything to avoid an attack. Am intending to try amitriptyline as a preventative though worried about side effects.

I have noticed that decaf coffee gives me headaches too - have you considered that?

You have my sympathy - migraines are dreadful!