Migraine Advice

[Melian]

I forgot to say, I had sumatriptan pills, nasal sprays snd injections. The injections worked but I bled because I got so stressed and then couldn’t do them at work. Alcohol was a major trigger so that went 13 years ago . Air pressure is too and the changing light at the equinoxes.

I was given the nasal spray. It worked. But I was fed up of sinus infections. Horrible! Currently on Maxalt which is so much better. (it's a tablet which disolves on your tongue)

 

[thenorthremembers]

yes cause I wanted it done but my neurologist told me it was all rubbish so told me not to bother. I did it thinking I could prove him wrong.


I had the Botox in forehead,back of head and shoulders by the nhs headache clinic

Hello new to the thread how are you all! I have suffered from migraines for 16 years. At my worst it was Everyday I’ve been having Botox now for 4 years I think. It’s a life changer. As for the piercing it doesn't work I’m afraid

 

[Blanche Hunt]

i was referred to a neurologist after I’d tried lots of medication, the headache specialist injects the Botox in the fore head,shoulders and back of the head.
it’s worth asking for a referral and doing a headache diary (the neurologist always asks for one )

Thank you so much. I’m going to try and have an appt with my GP soon to review my migraines and I’ll ask - I don’t hold much hope as a referral to anyone is like gold dust with our surgery.

 

[mindlessness]

I get them sometimes - though I think mine are much less severe than some here. I don't know quite why but I am finding I have had less the last few years, thankfully. Stress and changes in barometric pressure are definitely my two main triggers (I also have an unproven theory the SNRI I was on at the time was making things worse).

I came across a woman on Tiktok who gets migraines and talks really openly about her experiences with different treatments - Tiktok unsafe link https://tattle.life/threads/19920/ Not sure if its super helpful, but thought worth sharing!

The lack of understanding is really disheartening @Blanche Hunt - especially when people conflate it with a headache. I get headaches quite often and migraines are so much worse.

 

[WadieHaddadsChocolates]

If they aren't prepared to do that then you're well within your rights to request that they refer you for an appointment with a Neurologist who will.

100%. It took seven years for me to be referred to a neurologist for my migraines - I hadn't been aware it was a thing and was only flagged up by an Urgent Care doctor who pulled up my records when I attended for out of control vomiting in association with a migraine (my usual prochlorperizine had for some reason not worked and they injected me an anti emetic instead). She looked at my records and was shocked I hadn't been referred to neurology, said it was a must.

The NICE guidelines explicitly say you should be referred to neurology in certain circumstances:

• Seek advice/refer to neurology (with urgency depending on the clinical situation) if:
  • A complication of migraine has developed.
  • Atypical symptoms (such as motor weakness or poor balance) are present.
  • The diagnosis is uncertain.
  • Optimal treatment in primary care does not adequately control the symptoms

Scenario: Adults | Management | Migraine | CKS | NICE

O would print this out and present it with your demand for a referral and perhaps mention you will put in a complaint if they refuse to refer you despite you meeting the NICE recommendations for such. Ask for a different doctor if possible.

GPs are such a crapshoot. Some are great, some are actually quite disinterested and robotic in my view, and have little interest in thinking outside a lazy knee jerk set of responses.

 

[margaretta]

Thanks so much everyone, I always feel better after posting here! Had a chill day yesterday and although I didn't have particularly healthy meals I did get 3 fruit and veg in there. I feel a lot better today. I've made a note of the circumstances around my last few migraines but wonder whether I do need to do a really in depth one like you say... I just know I'd struggle to keep up with it even though I know it's fairly basic. Does everyone else keep diaries?

The hospital requires me to keep a migraine diary and I have done for years.
Keeping a simple migraine diary is the fastest way to the right treatment.
For me all I keep now is a daily pain score (1-10) and if I have taken any meds and if it was my period.
What it will show is if there is a pattern to your migraine: how often you get them, how intense they are, what meds you take, and if you get them at the same times of the month etc.

If you go and see a migraine specialist the first thing they will ask is if you keep a migraine diary. By keeping one already it will speed up your access to the best mediation.

 

[SamKe]

what did the eye test flag up? X

raised intercranial pressure Would have been fine if my gp had taken my worries seriously

 

[Cheapseats]

I have been told magic mushrooms in micro dose helps. Someone I trust got them for me and I am about to try out

Will report if any good

 

[da1sycha1n]

I have suffered 2 types of migraines for many years one kind deffo linked to menstrual cycle sure as fate i d get the most horrendous headache I would be chalk white along with waves of nausea followed by my period starting about 12 hours later they would last for about 2 days, if I’m honest I did feel ruled by them for many years I could although now I’m in the menopause thankfully they have dissipated and now when I do get the odd one deffo not as severe there taking 2 paracetamols along with 2 ibuprofen did help ( and lying down with a hot water bottle clamped to my head also I used a fore head stick it didn’t take it away but did offer a little respite
I also from time to time suffer from auras Iall of a sudden get a flashing oval shaped halo in front of my eyes i find it’s triggered by direct sunlight or bright lights as soon as the flashing starts I take painkillers and have to lie down because I know as soon as the flashing stops the pain starts

 

[oogling]

I suffered terribly, triptans were the only thing that helped I honestly had 3 a week. I cut out wheat for something else (skin related) and I honestly get one migraine every 3 months if that! Obviously I had an intolerance I didn't know about but I just got fobbed off all the time and I lost out on so many years being in bed with the pain

Wheat is my trigger for migraines! I had brain scans you name it, a friend suggested food allergy/intolerance test, I thought it was rubbish but was so desperate…wheat and dairy off the charts…wheat gives me massive debilitating migraines, dairy buggers my stomach and makes me vomit!

 

[knivesnflowers]

when i went to see a neurologist for the first time since being discharged from paediatrics and had paaaages of notes i printed from migraine buddy for the six months previous, he couldn't care less. i was there for chronic pain but migraines were on my record and both meds controlled by that dr but he was genuinley surprised that i'd even bothered. always advocate for yourself though, i will never regret playing an active role in appointments.

 

[Dancing_in_the_dark]

The migraine trust has a template of what most neurologists want for a migraine diary that can be downloaded. I have to keep one as I’m currently in treatment for chronic migraine along with another neurological disorder. You get used to filling it in but it will help getting the right treatment if you are all ready to go when you speak with a dr

 

[Justreading]

So I don't think what I had was migraines as such, from things I've heard mine definitely weren't as severe. But I would struggle with severe headaches weekly, usually on a Friday/Saturday after a full week of work. I'd get to 6pm on a Friday and I would have a headache behind my eyes making me exhausted, couldn't stay awake and nauseous thankfully never dizzy and I could carry on with life albeit struggling.
I did get the daith piercing, I had it on a Saturday while suffering and the relief was almost instant! I do still get these headaches but no where near as often, maybe every 6 months or so and usually after a tough few days of work rather than just a normal week.
I didn't see a GP prior to this as it was nearly always manageable with paracetamol, now they're far less often and always manageable with painkillers so I'd say a massive help!

 

[Starfish13]

I would recommend magnesium supplements alongside the prescribed preventative meds. Since I started the supplements last Oct I’ve had far fewer migraines. It might be a placebo but it’s working for me!

 

[bcfc999]

Was fine going to work yesterday, but once I got there I had aura without migraine which I didn't know was even a thing? That lasted about an hour as I took sumatriptan straight away. I then had an awful headache all day, felt achey all over and really nauseous. Still haven't recovered I'm now out of sumatriptan but apparently I picked some up from the pharmacy last month as my prescription was collected... God knows where they are but I could do with having them to hand.

 

[bcfc999]

My migraines have got more frequent over the last few months and I'm not sure why. I started a new job a few months ago but it's the same amount of screen time and less stress than the previous one so don't think it's that. I take sumitriptan to prevent them and it does seem to work if I have advance warning but it makes my body feel like lead and makes me so tired. Sometimes I don't get any warning and sumitriptan doesn't seem to have any effect then. I've started using Migraine Buddy as someone suggested but I can't see any triggers or trends.

 

[Cameforalook]

Omg this! I once had my old boss say to me now try not be sick with a migraine Monday ? I was like sorry I can’t pick and choose what days it will come on . She repeatedly kept coming back well don’t do anything over the weekend what normally brings them on so insensitive as if I would bring one on intentionally people really don’t get it . Sorry for my rant lol but I’ve suffered around 15 years now and recently started taking Imigran (sumatriptan) and it’s worked for me straight away x

I find the lack of understanding around migraines both from the professionals and from family/friends/colleagues who don’t suffer from them so disheartening. Even after al these years some people really close to me think they are headaches.
[/QUOTE]

 

[CatCafe234]

I used to have them years ago but thankfully haven't had one in a while (touch wood!).

Up until last year, I'd get a massive headache (not a migraine) every Saturday morning; I put that down to it being my body releasing all the stress of the working week. Since I got my daith pierced (which I did in the hope that my hearing would improve [it has helped]), I've found that I only get slight headaches when I'm under pressure or haven't had my daily coffee.

The only drug I found that would help when I used to get migraines, was Mersyndol (https://www.medsafe.govt.nz/consumers/cmi/m/Mersyndol.pdf), but they'd leave me feeling really hungover for days afterwards (no headache, just drowsy and nauseous).

We have those in the UK, sold as Syndol. I find them brilliant for migraines but they seem to go in and out of stock all the time, which is irritating (also you have to be careful as the have codeine in so you can only take them for a few days at a time, max.)

 

[zetta buttons]

Thanks so much everyone, I always feel better after posting here! Had a chill day yesterday and although I didn't have particularly healthy meals I did get 3 fruit and veg in there. I feel a lot better today. I've made a note of the circumstances around my last few migraines but wonder whether I do need to do a really in depth one like you say... I just know I'd struggle to keep up with it even though I know it's fairly basic. Does everyone else keep diaries?

I did at the start. It made me realise that drinking/weather/certain types of exercise/time of day and year were all implicated. I know it’s a pain but it gives you some control back.

 

[SamKe]

I’ve had migraines for a long time,tried lots of medication and was on Botox for a few years which worked.I’m currently injecting myself monthly with ajovy which worked but I feel it’s stopped working as well so I’m going to try and get back on Botox,