Migraine Advice

[Giggling Squid]

What are the side affects to the sumatriptans? Do they leave you feeling drowsy?

I feel a little spaced out for a few hours but not even close to the migraine they stop

 

[Marmitelover]

I was on Topiramate for 3 months. I saw significant improvement but the side effects outweighed the benefit for me. I did drink on it, funnily enough I lost the ability to taste fizzy beverages. I’d drink a light beer and it would taste sweet. I didn’t feel any type of buzz when I drank and got sleepy so didn’t bother.

(Not related to drinking on it but as a side note- I would monitor how you feel mentally on it the first 3-4 weeks before drinking. I know for some it’s a life changer but i do want to raise caution to some of the cognitive and mental side effects listed on the pamphlet - for me they were serious and I’ve read similar on other migraine forums. That said, ive also heard of many success stories on it. Just one of last ones I’d mess with in terms of drinking of on as migraine preventatives go, it makes sense. I hope it works for you and if not, there’s so many options out there xx

Hi, thanks for replying.

I have been om it for a few weeks now, and have just got to 100 a day. Drinking wise it has been OK, but it's the fizzy (alcohol or not) that's playing havoc with my insides! I'm eating Indigestion tablets like sweets. I'm assuming that is a side affect? Also, tingling hands feet and face.
So far it's been great for my migraine. But I have lost words a few times.
Are there any other side affects you have had that I can look out for?
My doc wants me to go up to 200 a day!

 

[uncleted]

Been prescribed propranolol a month ago for almost daily migraines and seems to be helping for the most part but has anyone has this and suffered from any weird side effects like swollen fingers ??

I just started back on this as well. It helps the number of migraine days for sure. I’m sluggish and a bit tired adjusting but no swollen fingers. I would contact your prescriber, since betablockers affect blood flow. I noticed my toes get cold, but maybe I need thicker socks

 

[Melian]

I suffer with pretty regular headaches, which I think would fall under the migraine category - always on my left side near temple and throbbing type pain. Often accompanied by nausea and have vomited a few times when they have been more severe. They are definitely hormone related because I didn’t get a single headache when I was pregnant - the only time I haven’t had them since my teens.
I’ve noticed I’m more prone to them when I’m tired too. I often yawn and feel very tired before they start, as well as having a tense, stiff neck.
I’ve never found anything to help, but I haven’t been to the doctor specifically for them, I’ve just put up with them really. Painkillers are often ineffective. The best thing I’ve found is sleep. When I get a bad one, sleeping it off is the only thing that helps.
Oh I crave sweet foods when I get them too! Definitely want lots of carbs.

If they're hormone related, it might be worth asking for the pill? I did and had virtually no issues for 6 years. I then started getting them again and switched to the injection. Not had a period since and not had hormone related migraines since.

 

[uncleted]

Hi everyone.

I'm just starting on Topiramate this week for migraines (have suffered since the age of 10, I'm 42 now). I was wondering what your experiences are when drinking alcohol on them?
I don't drink during the week, but like to have a social drink one night at the weekend. I'm wondering how the drug affects you when drinking.

Thanks in advance

I was on Topiramate for 3 months. I saw significant improvement but the side effects outweighed the benefit for me. I did drink on it, funnily enough I lost the ability to taste fizzy beverages. I’d drink a light beer and it would taste sweet. I didn’t feel any type of buzz when I drank and got sleepy so didn’t bother.

(Not related to drinking on it but as a side note- I would monitor how you feel mentally on it the first 3-4 weeks before drinking. I know for some it’s a life changer but i do want to raise caution to some of the cognitive and mental side effects listed on the pamphlet - for me they were serious and I’ve read similar on other migraine forums. That said, ive also heard of many success stories on it. Just one of last ones I’d mess with in terms of drinking of on as migraine preventatives go, it makes sense. I hope it works for you and if not, there’s so many options out there xx

 

[Hemerocallis]

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!

For me too, fewer migraines and/or milder ones.

Migraines may vary over the years. I've had a phase with auras (30 min. flickering like old TV and leaving only a small hole in the middle of my field of vision), a time with "just" headaches but no to little nauseas, then strong headaches with nausea and vomiting. Once my husband had to drive me to the emergency. They thought I had a stroke, I told them that it was a migraine.
For the last years, in addition my nose is running, sometimes swollen shut like having a violent cold for ca. 30 min.

Zomig and Zofran didn't work for me. Fortunately Paracetamol does.
Triggers I identified are dehydration and skipping breakfast.

Also had migraines during pregnancies, didn't stop them at all as is always claimed.

Slowly the perception of (people suffering from) migraine is changing, I think.

 

[Chickenandgravy]

My migraines are directly related to wheat!!! When I was younger I thought it was just period related, but as the years went by it got progressively worse…the drs couldn’t figure it out, eventually a friend pursuaded me to have an allergy test! Wheat give me instant migraines, cow dairy (lactose) makes me vomit! At the time I was told I may eventually be able to reintroduce these things later in life, 25years later having a take away and getting glutened AND dairied, I can categorically state I cannot reintroduce them!!

It's funny because the drs always told me it couldn't be related, I really had to put forward a case for it. Even the neurologist was a bit sceptical

 

[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.

 

[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?

 

[SamKe]

I know people are sceptical, but since having my daiths pierced (medically) I have had one migraine in the last 7 months when I was having them weekly. And that was brought on by too much sugar. I also rarely get headaches and I used to get them all the time.

I tried it but it didn’t work for me but it was a pretty piercing

 

[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.

 

[Shoegal17]

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

If they are on Facebook get them to join the UK Migraine Support page as there are so many suggestions on there and it really helped me. There is also the Migraine Support Charity and their website is also a great source.

 

[Pink blancmange]

I've suffered with migraines for years and years, it's hormonal as its always when I'm due on. I was prescribed Sumatriptan in January, it does get rid of the Migraine but it makes me feel drunk, unsteady on my feet, I feel spaced out and they make me violently sick so I can only take them before I go to bed to try and lessen the effects slightly. I work full time and have 2 children so I have to pick between the Migraine and it's effects or the tablets and their effects. I need to call the doctor and ask for something else, can anyone help with what else they may prescribe and what their effects are please?

 

[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.

 

[hol20x]

I don’t drink caffeine cos it triggers migraines for me. I take propranolol to prevent them which does help. I use those cool patches for my forehead which helps me get to sleep when I've got one.

 

[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.

 

[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!

 

[Pinhead Larry]

Glad to have stumbled across this thread! I was sent to a&e yesterday and had to have a ct scan because the gp was concerned about the migraines I’ve started getting since the beginning of this month. Luckily, the scan came back fine but I’ve been told by the a&e dr that it’s probably migraines and to keep a diary of them. I’ve also been prescribed triptan.

I’ve noticed you’re speaking about Botox, and it’s made me think. I get my forehead and laughter lines done for cosmetic reasons, and have done for years. I’ve never left it as long as I have now between top ups but I’m trying to lose some weight and I’ve put Botox as the reward for my half way point.

Do you find that getting forehead botox helps your migraines? Or is it prescription head botox that’s the only saviour? I’m wondering if it wearing off almost completely has caused this/unmasked the pain.