Migraine help-feeling like giving up

[Migraineh3l]

I've suffered migraines and headaches all my life from a teen on and off. I've had scans done when I was a teen as I missed a lot of school. They said I'd grow out of them. I got acupunture on the nhs which helped me when I was younger to relax as I had a lot of tension headaches as well as migraines. In the past 3 years I've had around 8 migraines a month, some lasting 1 day up to 5/6 days. This time I've had it on and off since last Thursday. Seems to be in the morning leading to afternoon but tonight it is back. I'm on Rizatriptan and Propanolol. Also have cocodamol for back problems/ endemetriosis pains which I take 8 of a day. I also have naproxen for a shoulder injury but it ruins my guts so don't take that unless in agony. I've asked my gp for a referral to neurology and she said wait and see what the propranolol does. Its turning me in to an insomniac which is one of the propranolol side effects. I can't say it's reduced migraines. I've tried white tiger balm, massages from professionals, acupunture and an acupressure mat. Nothing works. I'm at my wits end. I'm going to ask again for neurology tomorrow. Thursday night I had sharp pains which felt like deep in my brain which turned in to migraine. I've felt nauseous since then, only able to eat now and again when the nausea goes away temporarily but comes back. Right now I have a headache as with migraine I can't tolerate phone screen or any lights I have to lie in the dark. It's ruining my life. I have a full time successful career which I've had so much time off from im now worried about being put on formal absence procedures. I also have a Daughter, who when I'm like this I can minimally parent. She's very good and will go on her laptop and watch TV but it's not fair on her and adds to my guilt. She just came back after school today after being at her Dad's so luckily I haven't been neglecting her since Thursday. Sorry this is so long I just don't know what else I can do. Oh I also take Aspirin if the Rizatriptan doesn't work. Problem is the Rizatriptan only comes in packs of 6 so when I get a marathon migraine like this one it only lasts a couple days. My partner went to get sumitriptan today for me over the counter but again only 2 tabs in a box so now gone. G.p had done my prescription today for riza but pharmacy weren't able to do it today.
I'm now thinking I have a brain tumour as surely its not normal to suffer this much this often with migraine. Acupuncture helps at the time but doesn't stop the amount of migraines. The white tiger balm numbs my forehead but doesn't help the pain in my brain/skull. I've tried mindfulness meditation too to relax but doesn't work. I'm going to be up all night now as I slept on and off today trying to get rid of the pain.
Am I missing anything? Anyone tried anything else? I've thought about botox for migraine it's expensive but if it took then away it'd be worth it. The dentist said I grind my teeth as well which can cause headache and migraine, I have a mouth guard now but doesn't seem to stop these.
Please help I'm so fed up and thinking I am dying. I just want to feel well and live a normal life. Sorry for the self pity.

I suffered from cluster headaches for years, one time my DH had to take me to A&E as it was so bad tears were flooding I was almost banging my head on the walls. They put me on oxygen all night and gave cocodomol which made me so sick, I threw up. Then my GP prescribed me propronolol and said I should take this every day, twice a day if needed for a month or two - which I did and bang this saver my life honestly after a further week of suffering it started to show effect and healer my headaches! I haven't been taking it all the time now but when i feel like that damn ache is coming I start taking it every day. I do hope you find your solution as I know it really sucks and you can't function properly

I mostly cured mine. I only get them exceptionally now. Mix of things, mainly supplements actually. Done in stages so seen a progression of improvement.

cut out folic acid - taking methylfolate instead (plus cofactors like TMG, glutathione) - found out I have the MTHFR mutation which means I don’t process folic acid - common with migraine peeps.

taking extra b1 and b2 (thiamin very important) - despite already taking b complex.

Taking electrolytes am and pm. Extra potassium and magnesium in particular definitely help. Realised this when I accidentally discovered sometimes eating loads of food with salt can cure my migraines.

Also sleeping on very very flat pillow, almost none. Realised looking down at phone and clenching jaw too much when awake has a triggering impact and pillow seems to sort that.

Trial and error, observation. Nutrition is more significant than we are led to believe (doctors don’t train in it).

Try coconut water when you have a migraine, see if that brings any relief. Or one of the sports electrolyte sachets. Easy place to start!

I'm sorry, I couldn't read it all so I might have missed this (I've got an ocular one myself coming on).

My DD was similar as a teenager, same amount, same intensity and couldn't take propranolol as her eyelashes and eyebrows started falling out. She had tests and dietary restrictions etc.

She started taking pizotifen daily as the preventer and had sumatripran tablets to take when a migraine was starting (had to time it right though) and this seemed to make them less often and more manageable. She started with horrendous migraines aged 9 but by age 18 they have practically gone. Shes had one this year. So there is hope.

oh my, that sounds horrendous.

My go-to is now aspirin, of all things. I have prescribed meds too but my first line is now aspirin, followed by aspirin with triptans and sleep. It's mad that something so simple has had such a dramatic impact on my life. Stopping working at my old office also helped - I think the lighting there set me off. I had a pharmacy assistant tell me I needed to give up cheese once, because this cured her migraines! However, you must have tried these simple things and dozens of others along the way, and found they weren't the magic bullet for you. Is there any link to your menstrual cycle - could something hormonal help perhaps? But I'm sure if it could, your GP would have tried it by now.

All I can suggest is keeping a headache diary (which you probably do already) and push for the referral. These headaches aren't under control and are having a huge daily impact. It's SO far from normal to have your life so ruled by this.

@Phrenologistsfinger thanks, the supplements sound very complicated or it's maybe just my brain finding it hard to take it in. I will try the coconut water and re read when this hopefully goes away soon.

@Pixiedust1234 I'm glad they have gone away for your Daughter now fingers crossed they will stay away.

@Finerthings thanks for all the suggestions. I think lights have triggered this episode as there were new extremely bright ones fitted at work. I've asked my manager if there's anything that can be done about them, or I'll be wearing sunglasses to work! I do take aspirin when I run out of rizatriptan or if it's not helping and it does sometimes work. Naproxen does sometimes help too but I need to eat a big meal and usually not able to do that during a migraine. I actually meant to mention menstrual cycle in my op. I previously stopped my pill which stops me ovulating at all. When I stopped the pill the migraines got worse around my time of the month. So I went back on the pill. I feel like my body is really sick right now and full of toxins. I think the person who commented about diet is spot on, its something I definitely need to improve on and once better in going to start looking at what foods I should be eating. Unfortunately when on an episode like this I've been ordering from takeaways, just things like chips and tonight had a mcdonalds chicken salad. I try to drink.full fat coca cola as sugar sometimes helps. I just feel stuck in a vicious cycle and I have so much to do tomorrow it's not fair.

There are other types of triptans and some prophylactics your GP could prescribe - talk to them about both of those.

My GP has put two boxes of my triptans on one script as six tablets is useless, so I get 12 at a time.

You can also order bigger boxes online, cheaper than buying in store, to at least get some stock in.

How old are you? Could HRT be a consideration?

I use to get a migraine every month where for 2 or 3 days I just had to be in a dark room and try to sleep as that was the only time I had some sort of relief. Medicine worked but I found my migraines were increasing in frequency, so I stopped. Then someone at work suggested eating an Apple a day first thing in the morning on an empty stomach. I honestly laughed when they suggested this. Anyways by this time I would have tried anything and started eating an Apple on an empty stomach when I woke up. After about 2 Months my Migrane did not return..I could not believe it!
I still get a Migraine after 4 or 5 Months but not regularly like before.

I hope so too. Speak to your GP about pizotifen. It really did help DD.

My friend persistently went to the GP and eventually got a neurological and migraine specialist onsultancy appointment at the hospital. They tried all sorts of things - everything from headache diaries, therapies and diet changes, different drugs to brain scans etc - and finally now have my friend on a very expensive drug (possibly a drug trial actually) that is working.

Friend is male.

I believe this is a factor as female pain is often under-estimated by the medical profession and not taken seriously.

Go to your GP and advocate stronger for yourself, there is help out there if they let you access it.

The triptans that you take ate they nose spray or tablets?
I have found that the nose spray form, as soon as you feel a migraine is coming, works best for me. Lying down for an hour after the spray works 90% of the time for the day but I might wake up the next morning with the migraine again (waking up with a headache is the worse feeling!)...

Anyway... I feel for you and I realise that what works for one person might not work for another.

I would definitely look into diet & life hygiene in general (e.g. drinking + tiredness can be lethal for me)

Have you called the Migraine Trust? I had terrible trouble with mine and they were so helpful

I find that taking my sumatriptan as soon as I get an inkling that a migraine is coming, lessens the length of the attack. I also use the lloyds pharmacy migraine tens machine which does seem to help. I’ve tried acupuncture, 3 different preventative meds, chiropractor, physio, osteopath, various supplements and botox in my tmj. The botox helped a little bit not enough to make it worth the cost. I get sumatriptan in 12s and usually get through all of them each month!

Sorry for the long rant, but know how you feel!

I haven't read the full post, but have you tried Botox injections? My friend swears by them for her chronic migraines.

Hello,

I am a long term chronic migraineur. It's not unusual at all to have many days of migraine. Chronic migraine is 15 days or over of migraine a month. Something that struck me immediately is the amount of co codamol you're taking. This may be causing rebound headaches. Migraineurs are advised not to take too many painkillers as this can actually lead to a viscous cycle of causing migraines. It seems you really need advice re how to best manage migraine and your other pain from a neurologist who specialises in migraine. The propranolol may work (it did for me for many years then stopped) but there are many migraine preventatives and it's often trial and error, but you do really need to talk to someone about how the other painkillers might be contributing. Not all neurologists specialise in migraine, make sure you are referred to one who does. Tension headaches in migraineurs are a bit of a medical myth. If you are experiencing head pain to lesser and greater degrees and you're a migraineur, it's probably all migraine. I wouldn't worry too much about diet. Some people feel it impacts them but for many it's irrelevant. It's easy to get into a worried pattern of thinking your migraine is caused by a food and cutting it out when it's unrelated. My specialist says if there's something you really think aggravates it, then maybe, but otherwise he's not fussed about food. I can't eat soy sauce, but other than that nothing else is an issue. You can get out of this cycle but you're right, you need a neurologist. I feel for you, it's horrible but you can get it under control and get your life back you just need the right help.

I was in a similar position earlier this year and had to push for a neurology appointment. I'm now on ajovy which has changed my life.
Your GP should do an assessment of how it's effecting your life, ensure you answer this as you are on your worst day with a migraine! Also, you say you get 8 migraines a month, the NHS goes off DAYS with migraine, so mine didn't meet the criteria for treatment until I realised it was actually 3 times what I thought because my migraines last generally around 3 days. I really hope this helps you get the treatment you need quickly x

There are lots of other medications you can try. Sometimes you need to try a few, I've been through everything, currently on Frenuzamab and gabapentin with naproxen and frovatripran and have recently paid privately for Botox as that helped in the past but am still having a bad headache everyday and around 2 migraines a week. Lots of trial and error. I've often found that something might seem to help for a while and then stop. Once I'm in a daily headache/migraine cycle its very hard to break.

You mention running out of tablets. You can buy triptans online yourself from various chemists. I've used: e-surgery.com/product/sumatriptan/

Before, I was in a state of constant anxiety, struggling to ration the pittance the GP doled out. Now, being able to pop half a tablet to stave off a potential migraine without worrying about running out and having to beg the GP for more has reduced the number of full blown incidents in half.

I dont think it was helpful for a previous poster to say diet changes don't help.
I have suffered from migraines and tension headaches for over 20 years. I had also been looking at botox as they were destroying my life.
I had tried cutting out the 'typical' migraine triggers to no avail but I recently had to cut out dairy for another reason and realised I was no longer feeling dizzy and nauseous all the time and was no longer suffering from migraines or tension headaches!

ask your GP to talk to you about topiramate. it's a preventative. After 20 plus years of chronic headaches and migraines it finally gave me some relief. its not without side effects at the beginning and not everyone can tolerate it, but if it worked for me. I still get monthly hormone related migraines and take triptans for those. I really do sympathise with you, it is horrendous living with chronic headache as it impacts every aspect of your life.

Hi. So sorry you’re struggling with migraine pain. It is awful. I get a migraine every month (with my menstrual cycle) and if I don’t catch it quick, it can last up to 5 days. I take ibuprofen (anti-inflammatory) with a strong cup of coffee (caffeine) and I found the Lloyds Pharmacy migraine tens machine really takes the edge off the pain and sometimes cures it. It was uncomfortable to use at first, but now I quite like the sensation. It’s like a full skull massage of electrical waves and really numbs the top of my head. Good luck, I hope you find something that helps. lloydspharmacy.com/products/migraine-relief-tens-machine

OP. You poor thing. Sounds horrendous but there are obviously other health problems too.
I would look at doing a total body detox guided through by a naturopath. It could be heavy metal toxicity.