Migraine Advice

[bcfc999]

Takes time, be patient.
Using a diary helps. I discovered that I get migraines when I don't drink coffee in the afternoon. The last attacks have all occurred then. I don't drink much coffee, one cup in the morning and one in the afternoon, but that's obviously extremely important for me to avoid migraine attacks.

Oh that's bizarre! I'm still going with it but can't see any patterns still. I've had three this week though which I have not appreciated

 

[JoeBloggs]

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

Did you have it done at a piercing parlour?

 

[SamKe]

Is it via your doctor you get the Botox or just through a practitioner? I’m so tempted to get this done just to try and see if it works.

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 )

 

[Melian]

I'd agree! I asked my initial question a few months ago when I was starting back on topiramate, and wow, it really messed me up.
The doctor wanted me to increase to 200 a day, but I only got to 100 and the side affects were so bad. I'd be driving along the road then all of a sudden forget what I was doing and where I was going. I have gone right back down to 25 which so far (touch wood) is keeping the migraines away. But I do sometimes still have an odd moment. I'm much more over sensitive and emotional too. I do wonder if it's worth the side affects at all. It completely altered my personality!

I'm glad you managed to come off them, have you found an alternative that works well yet?

I'm on Pitzotofien and GONI (greater occipital nerve blocks)

Not had any major issues with either

 

[JoeBloggs]

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.

 

[knivesnflowers]

definitely get symptoms but it's mainly a lot of pressure in my head i guess? generally feeling shit and then an extension of any of my usual chronic pain / chronic fatigue symptoms. basically an okay day becomes a bad one in the space of minutes / hours and then i'm in bed for x amount of days until the rebound/lingering headache is my new normal and fades (this can take weeks if i'm just generally stressed out, but it's the same feeling as a new attack so i'm always second guessing if it's a fresh cycle or i'm just in a constant state of tensing my face muscles). also sometimes get gastrointestinal pains or cramps etc but the only consistent thing i can think of is the head pressure and then that *is* the migraine i'll experience, just gradually builds to 100% intensity.

the head pressure is a weird one though because it's temples, forehead, eye sockets, nose bridge, jaw, behind my ears when it gets to 100% but i know a migraine is starting bc it feels like i'm clenching, furrowing my brow or focussing my eyes even though i'm not. like i'll stretch my face out, squeeze my eyes open and shut, can feel my skin moving but my bones (this doesn't sound medically accurate but it's beneath the skin) still have the same tension. they almost feel dense? i've described it before as my skin shrinking but it's actually more of the inside pushing out and my skin can't expand.

100000% relate to the brain fog / disconnected feelings, irritability and confusion but again that happens anyway with the pain and cfs so i've never put that down to migraines, v interesting that both could be a factor. i also get yellow spots when looking at stark white sometimes (imagine printer ink splodges on a piece of plastic, like a slightly transparent colour tint) but this isn't when i'm having an attack.

 

[uncleted]

I wouldn't touch this stuff with a barge pole ever again

It left me with mild hearing loss. This is quite rare. I remember everything (including water) tasting like metal. Also had a 24 hour fever on it and constant thirst

I had to beg to come off it. No one understands why I don't want to go back on it

It did help but I couldn't stay on it

Same still have vision issues from this.
---

Just had the suggestion of Botox along my neck and head from my consultant. I'm a bit reluctant.....has anyone else had it?

Botox literally saved my life. I’d be on disability without it.

 

[Chickenandgravy]

Just had the suggestion of Botox along my neck and head from my consultant. I'm a bit reluctant.....has anyone else had it?

 

[Peeltheavocado]

I had to beg to come off Topiramate. Sure, it worked but the side effects were awful. I'm (I understand this is incredibly rare) mildly deaf because of it.

I'm now on pregabalin and the side effects are somewhat better. Hate the weight gain though.

Gosh that’s awful side effects. Must admit on top of my other disabilities I did feel rubbish upping the dose so quickly. Thankfully no major side effects though.
Pregablin and gabepentin made me feel drunk and slowed down. I couldn’t cope with either of them.
I hope you’re feeling a bit better now

 

[margaretta]

Yes I’m slowly tapering following the neurologists advice it’s just horrible. I think it’s being made worse by the fact when I got the prescription it was also a different brand to normal and I’ve found changing brands affects me. I know that sounds silly but with some meds if you get it made by a different company it can affect you slightly different. Im just feeling shitty and sorry for myself right now it’s only like 4 more days to go before I finish them

It doesn’t sound silly at all and is quite common.
In the UK the pharmacist might substitute a cheaper brand. I’ve found when this happens to say to the pharmacist when you hand the prescription you need a particular brand, the same brand you’re already on. Then when you collect the meds, check as they hand them over and refuse if it isn’t the right brand.

 

[Blanche Hunt]

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,

Is it via your doctor you get the Botox or just through a practitioner? I’m so tempted to get this done just to try and see if it works.

 

[uncleted]

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!

I remember the tingling of hands and feet now that you say it. When I went up to 100, I started feeling odd. Just like off or disconnected socially. I’d lose words at first - in example, I could not think of the word green one day to save my life but was able to just say “like the color of the Forrest“. it’s bizarre. it got the stage where I wasn’t able to speak with clients in work because I couldn’t think of what to say at times. I also got mental health side effects and issues with my vision. I’m glad you were able to find relief from it. I know a few on it with no side effects or just side effects when they titrated up to 100 for a few weeks. then there’s others like me who got alllll the side effects. hoping it keeps working for you

 

[Peeltheavocado]

It took the gps years to refer me to the headache clinic within neurology around 8 years ago. The dr there reckoned I’d I’d been having migraines for years and not just headaches when I was a teen.
He started me on topiramate which worked but upping them within two weeks to the recommended dose was awful. So I discussed it with him. And it took me a year to up them completely. I’m still on them, I very rarely get migraines now compared to 3 a week.
I was given naratriptan which I could take when I was busy and unable to go and lie down. And rizatriptan when I was able to go straight to bed.
They did query hemiplegic migraine twice before topiramate also.

It’s a great preventative if your Body either copes with the side effects or you can come up with a plan with a Dr or specialist.

edit to add instead of taking any topiramate in the morning I take it at night.
Also the gp had me try a few other things before they would even consider a referral. I was 13 when I first saw a gp about migraines, and mid thirties before the gp referred me to a specialist

 

[Melian]

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 wouldn't touch this stuff with a barge pole ever again

It left me with mild hearing loss. This is quite rare. I remember everything (including water) tasting like metal. Also had a 24 hour fever on it and constant thirst

I had to beg to come off it. No one understands why I don't want to go back on it

It did help but I couldn't stay on it

 

[margaretta]

Hello you lovely lot, hope everyone is doing well xx

I'm still waiting for my neurology referral (only 2 months left to go ) and my symptoms are getting worse meaning the tablets I have been prescribed originally are no longer helping. Rather than long lasting migraines, my headaches are more like cluster headaches and I believe I also have red ear syndrome too which is fun.

Is anyone else in the same boat in terms of the cluster headaches or anything similar, and has anything helped at all? I know there are more tablets I can possibly try, but due to not being on contraception and my asthma, my doctor won't let me try anything other than naproxen until I have seen a neurologist

I'm finding it really hard to concentrate at work, and the pain is getting increasingly worse each day and I cannot seem to work out what the trigger is either which is annoying!

Sorry to hear you are suffering. How often are you taking Naproxen?
Doesn’t Naproxen fall under the NSAIDs category? Which means if you take it too often it will make your migraine worse and trigger cluster headaches and rebound headaches.

I appreciate it’s really difficult but cut your use of all Nsaids (paracetamol, ibuprofen, naproxen etc), go cold turkey and keep a migraine diary. It will speed up your treatment when you see the neurologist because the first thing the neurologist is likely to do is tell you to stop taking the naproxen and everything else, keep a migraine diary and they will see you in 3 months time when they can see it isn’t a medication overuse headache.

This is probably not what you want to hear right now and i’m not a doctor, but it is the best option, especially as you said yourself you’re starting to get cluster headaches. Good luck.

 

[bcfc999]

That is great and makes me think I should give it another go. Mine have no pattern but definitely getting more as I move towards the menopause (although have never seemed hormonal before). I need to get them sorted as had 2 in a week a few weeks ago and I don't have time to be laid up with them.

Oh no that's awful, 1 in a week is bad enough. I think it's worth a go!

 

[knivesnflowers]

thinking about it more idk if the meds even make me drowsy or i just got into a subconscious routine of napping bc then i wasn't in pain?? and if the pain is over my eye sockets the only thing i can do is close them ig lol

Ahhh I’ve never heard anyone describe their migraine like this! This is exactly what I experience towards the end of my migraine it feels like it’s kind of coming down my nose?! So weird.

yep to the pain coming down my nose too! more recently it's starting at my hairline instead of just my eyes too - it feels like someone is pulling the skin on my face so tight and then the burning comes after. best way i can describe it is that acidic squeaky feeling in your mouth when you can taste the bile after being sick, but literally inside the face muscles?? very weird and i've not heard anyone else have it either!

 

[Fallfromgrace]

My ex colleague has the hemiplegic migraines and has had Botox for years. She had to give up her main career (like me) but is able to do other stuff still. The Botox has enabled her to live rather than exist.

I e hemiplegic migraine awful things diagnosed by a stroke doctor and a opthamologist and then diagnosed by my own doctor has having it. But what I got off a neurologist if the hospital doesn’t cancel for the 6th time he thinks trig neuralgia and migraine

 

[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?

 

[Dancing_in_the_dark]

I'm hoping for the Botox injections when I see my neuro in August. Anyone else had them?

I’m 2 and a half years into having them and it’s changed my life. I’ve gone from every day pain scale 8 to 10 down to still daily but average pain scale 4. Much more manageable. I am also now taking candesartan to try get even better results but I wouldn’t go back now. I have very severe chronic migraine as a comorbid brain condition I have