Migraine Advice

[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.

 

[Shoegal17]

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 think you can get an app called migraine buddy that you can track things on.

 

[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.

 

[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

 

[uncleted]

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 use migraine buddy to track my symptoms, it helped my identify my triggers (period, weather, and lack of sleep). It tracks barometric pressure too, I also use WeatherWell. Im in the states so not sure if these are US based apps, I’ve had to go gluten free while living here. Never had them in Ireland which is strange because weather is my biggest trigger. Loads of triggers over here!

 

[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.

 

[uncleted]

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.

I had the same experience with my neurologist. Someone explained to me that they deal with so many complex neurological conditions that it’s difficult for them to get a grasp on one. I now see a headache specialist at a headache center and he was very interested. I had 3 different neuros and found them all to be quite cold. One didnt even remember my name/if we met after seeing me twice. Another one told me to control my migraines by going an IUD. I ended up developing chronic migraine. Yes advocate for yourself but find a doctor/neuro who has good beside manner/compassion. I find that’s all we need as migraineurs with the stigma, someone to just understand the magnitude of the illness and show us compassion.

 

[queenamber]

Has anyone had success using Ubrelvy/Ubrogepant? I've been having migraines for the last few months (mine seem to be hormone related so I'm having some further tests done) I got this from my doctor today and wondered if anyone had any experience?

 

[Lizzie Mintdrop]

I've been diagnosed with migraine this week, GP prescribed sumatriptan.

I had what I believe was a migraine 12 years ago. I had a few really bad headaches over the years but nothing like the migraine. Then, in October last year I had just finished my period and was out quite late, didn't get home til almost midnight, which is super late for me nowadays. Anyway, I woke at 7am with a bad headache which just got worse as the morning went on. I rang my boss and told her I was too sick to carry on working. I'd taken some co-codamol but it didn't touch it. I went to bed at 10.30am. I rested but didn't sleep. At about 12.30 I threw up. That eased the headache considerably. I read a little about migraines and I ordered 5HTP and magnesium and started taking them both when arrived. I thought they were working really well until late December, also the last day of my period. I'd been out all day the day before and then woke up with another migraine, felt awful until I threw up again. Same as last time I felt awful for a few days after. Then last week, in the middle of my period I was out until late the night before, woke up in the morning feeling awful. I went to a pharmacy to get something for it as my partner was concerned, they gave me migraleve even though I hadn't, at that point been officially diagnosed. It was fab as it immediately eased the nausea, if not the headache.

Anyway, sorry for the essay, just wanted to write it all down. I think for me, no more late nights when I'm on my period. I have PCOS, which is linked to migraine but also means I don't have a regular cycle so I can't plan to stay in when I'm on.

 

[Nelly's mum]

A member of my family has paralysis when they wake up, unable to speak or move, this wears off over several hours and they are still recovering the following day. This happens up to 2x a week, and has gone on for 10yrs.

It is a type of migraine apparently - does anyone on the thread have anything like this?

 

[Melian]

Finally got an appointment to see neurology.

This is going to get interesting - last had a brain scan in 2016. I found last year I have a rare birth defect ( it can be seen on scans):which no one ever told me about.

 

[margaretta]

A member of my family has paralysis when they wake up, unable to speak or move, this wears off over several hours and they are still recovering the following day. This happens up to 2x a week, and has gone on for 10yrs.

It is a type of migraine apparently - does anyone on the thread have anything like this?

Sounds like a hemiplegic migraine. I have friends who suffer with them.

 

[Nelly's mum]

Sounds like a hemiplegic migraine. I have friends who suffer with them.

Hi! Yes hemiplegic migraine seems to be most likely - but it only ever happens on waking, not at any other time.
Do your friends have this too? Have they found any medication (or anything else) that helps or prevent it?

 

[margaretta]

Hi! Yes hemiplegic migraine seems to be most likely - but it only ever happens on waking, not at any other time.
Do your friends have this too? Have they found any medication (or anything else) that helps or prevent it?

Yes. On waking. They are under the care of a neurologist and get prescribed preventative medication. Your family member should ask their GP for a referral.

 

[Nelly's mum]

Yes. On waking. They are under the care of a neurologist and get prescribed preventative medication. Your family member should ask their GP for a referral.

Thanks for your reply Margaretta ! My relative has seen doctors - I'm not sure if they are a neurologist - they've tried different meds, also injections, but nothing improved the paralysis attacks.
Do you know the name of the preventative medication your friend was prescribed? I could pass it on to my relative, it may be something they've not tried.

 

[TwooTwooTwitTwitTwoo]

A member of my family has paralysis when they wake up, unable to speak or move, this wears off over several hours and they are still recovering the following day. This happens up to 2x a week, and has gone on for 10yrs.

It is a type of migraine apparently - does anyone on the thread have anything like this?

That sounds like either Basilar or Hemiplegic migraines. I have the former but fortunately it is very well controlled these days.
---

Thanks for your reply Margaretta ! My relative has seen doctors - I'm not sure if they are a neurologist - they've tried different meds, also injections, but nothing improved the paralysis attacks.
Do you know the name of the preventative medication your friend was prescribed? I could pass it on to my relative, it may be something they've not tried.

My neurologist prescribed me a low dose of amitriptyline which has been brilliant. I take rizatriptan for acute attacks which isn'trecommended for my type of migraine but I found sumatriptan did something weird to me.

I think topirimate (sp?) was the other potential preventative option but the side effects sounded brutal so I'm glad I managed to avoid it.

 

[Nelly's mum]

That sounds like either Basilar or Hemiplegic migraines. I have the former but fortunately it is very well controlled these days.
---

My neurologist prescribed me a low dose of amitriptyline which has been brilliant. I take rizatriptan for acute attacks which isn'trecommended for my type of migraine but I found sumatriptan did something weird to me.

I think topirimate (sp?) was the other potential preventative option but the side effects sounded brutal so I'm glad I managed to avoid it.

Hi TwitTwoo ! Thanks for your reply, I passed your info on to my relative, they've already tried these meds so the search continues to find something that helps, or even better, stops the attacks.
When it's happening 2-3x a week it is taking over my relative's life, I just feel there must be something that can help

 

[TwooTwooTwitTwitTwoo]

Hi TwitTwoo ! Thanks for your reply, I passed your info on to my relative, they've already tried these meds so the search continues to find something that helps, or even better, stops the attacks.
When it's happening 2-3x a week it is taking over my relative's life, I just feel there must be something that can help

I'm sorry to hear that. Your relative has my enormous sympathies. I understand how debilitating it is. I hope they find something that helps soon!

 

[margaretta]

Hi TwitTwoo ! Thanks for your reply, I passed your info on to my relative, they've already tried these meds so the search continues to find something that helps, or even better, stops the attacks.
When it's happening 2-3x a week it is taking over my relative's life, I just feel there must be something that can help

Are they able to get their neurologist to give them botox or aimovig?

 

[Nelly's mum]

Are they able to get their neurologist to give them botox or aimovig?

Hi, I asked my relative, here's their reply;
I've tried Botox, and I've tried Ajovy (which is similar to Aimovig) which was the injection I had bad side effects from, so I've declined to try others that work the same way ! Keep em coming lol

So the search continues! Thanks for all your suggestions Margaretta and TwitTwoo, I am sure there is something that can help