Migraine Advice

[Dancing_in_the_dark]

Has anyone who has tried topiramate suffered when coming off it? I was fine when starting it and had no side effects at all. It didn’t work for me at all. Might as well have taken smarties but coming off it is horrific. I’m having an awful time. I’ve only got this week but really it’s horrible.
Im starting Botox this week too so hopefully that will help.

 

[pinkmug]

I tend to get ocular migraines before the headaches start. Freaked me out the first time, thought I was having a stroke but my doctor said it happens. Nothing showed up on the MRI or the eye exam. It's annoying (and maybe would be dangerous if I drove) but it also serves as an alert to take a painkiller beforehand so I get through the migraine relatively easier.

My mother suffers from them terribly. The only thing that made tangible difference was these shots her doctor prescribed. It's supposed to be preventative and she's really benefited. Mine aren't as violent so I make do with ibuprofen+paracetamol and cold press on my forehead and nape.

 

[LifeOfMog]

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!

 

[zetta buttons]

I get cluster headaches. Been on 200mg of topiramate for years, also Gammacore off and on and oxygen. I had a really bad cluster in 2019 which essentially ended my career.

I would push for Gammacore if you think you are in the middle of a cluster. It can “push”you out of one if you know what I mean. I am really lucky in that my neurologist is a specialist in them. I had to be taken off verapamil because my hr went to 20. Sumatriptan tablets didn’t work and I couldn’t inject whilst at school.

In terms of triggers, weather changes, pressure changes (going on a plane last year was horrific and set me off again), stress, alcohol, light outside (so the seasons).

I started having clusters over 22 years ago, the knowledge base now is so much better. Good luck .

Just as an aside , Cluster headaches don’t react in the same way to other migraine medication. That’s why Gammacore and oxygen is often used. Most general practitioners don’t understand this and also don’t understand that when you wake at 2am every night with no pain, but knowing that the reason you’ve woken is because the pain is coming is terrifying. They tell you to sit in a dark room but sitting doesn’t help. The pain is too bad. Unless you know someone or speak with a specialist, you feel so alone.

 

[MeredithJay]

I am a fellow migraine sufferer. I started with them when I was 13 (I’m now 48). I also get suffer with vertigo, which is made worse by my migraines.
I am prescribed amitriptyline, previously was on beta blockers. The amitriptyline seems to help as I get a migraine about once a month now rather than weekly.

 

[Giggling Squid]

I’ve had migraines for almost 15 years. Most of mine are related to hormones, alcohol and changes in air pressure. I’ve been prescribed sumatriptan tablets as a treatment pretty much since i was first diagnosed. I’m lucky in that I don’t seem to be that affected by the drowsiness that a lot of people seem to suffer from when they take sumatriptan.

 

[toffeejelly]

Did anyone panic that it was something more serious than just a migraine? Currently had two migraines in the past two weeks, one lasted a full week and the other 3 days

 

[LifeOfMog]

@LifeOfMog did you get your results?

I did, all clear thank god! Although the doctors don't like my symptoms, and are sending me through to neurology and currently on pain medication everyday until I am seen xx

 

[Gymhoned]

So interested in this ear piercing thing!! Never heard about that.

Botox i had in my forehead for cosmetic reaaons...still had mild headaches. Not sure where the botox should be injected for migraines specifically?

One thing that REALLY changed things was a tooth guard. Fitted by my dentist. I used to wake up with AWFUL headaches that lasted all day. Reduced significantly since the toothguard its unreal. Anadin Extra also helps and tons of water.

 

[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.

 

[Blanche Hunt]

I have tried to participate in a drug trial twice in the last 2 years and both times got booted off as I got a migraine and vomited. It's literally the only time it's happened. After the 1st time I thought it might either be dehydration or caffeine withdrawal so the 2nd time I went on a trial I made sure I tapered my caffeine 1st and drank lots of water while there. Exactly the same thing happened, 24 hours after arriving I got a migraine and then vomited. I'm now pretty sure it was the lighting in there that was causing the problem for me, something to be aware of if you work in an office or hospital.

I used tae work in an office and would get weekly migraines because oh the poor lighting wae bright white bulbs and the cheap white blinds that didnae block oot the glare fae the sun. It wis such a relief tae work fae hame as ah get slightly less migraines noo.

 

[flap a doodle dandy]

I love my propranolol! Started it a couple of years ago and have only had three or four since, whereas I was having at least one a month before.

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.

 

[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?

 

[knivesnflowers]

I could have written this, your symptoms are almost identical to mine. I see a maxiofacial surgeon actually, who specializes in facial migraine. I just got lucky that that otolaryngologist knew him and he was on the floor below. It makes me believe that some of this an inflammatory reaction, especially with the swelling around the face. My eye will sometimes droop, if migraine is on that side. Have you tried cutting out certain foods or an antinflamitory diet? I know it’s awful having to suffer with migraine let alone cut out foods you enjoy. The only sense I can make of the gluten reacting to me is that I have a celiac intolerance and it causes inflammation, triggering the migraine reaction. That’s a wild guess though

i did have a blood test for coeliac a few months ago which was negative but will definitely look more into it! this was after a folate deficiency and high lymphocytes. i do have hashimoto's thyroiditis so wonder if it is autoimmune and /or hormone related beyond the link i've made myself with estrogen. also have rosacea so burning on my cheeks can flare with other symptoms too so probs doesn't help the facial pain. i might get back in touch with neurology tbh, when i was referred for migraine they tried to help it as a knock on effect to my chronic pain by changing those meds, but when that wasn't working they just never revisited the migraine issue? need to keep pushing it i think!

 

[JSquared]

Only painkillers that help ease my migraines are Solpediene soluble. Taste like shite but I mix juice to help.
I also try to avoid dairy and caffeine, making sure I stay hydrated each day.

 

[WadieHaddadsChocolates]

After my migraines have increased in frequency and severity and I've needed my sumatriptan dosage doubled to even begin to get rid of one, I'm starting propranolol as a migraine prophylaxis this week. Anyone found it useful?

The pharmacist said it is a much nicer option than topiramate as a preventative drug, and reading this thread, I can see why!

 

[blackmasque]

I have chronic debilitating migraines but luckily they are mostly controlled at the moment thanks to a lot of meds. I have aimovig injections monthly, nurtec every other day, and take gabapentin, cymbalta, birth control (Ethinylestradiol / Levonorgestrel) and mental health meds. I also take magnesium supplements. I'm glad they made nurtec a preventative instead of just a rescue med, taking it eod has been more helpful than just taking it when I get a migraine - especially because I can't take triptans.

 

[flap a doodle dandy]

I started propranolol almost 4 weeks ago and I've only had one migraine since then which was about 4 days after starting them. I was having one a week before then so I'm quite chuffed with that

Great news - are you getting any side effects from it ? I tried it years ago but it made me feel like a zombie but wondering if I should try it again now ?

 

[Cheapseats]

Taking those dried mushrooms. I take them when I have a migraine. It doesnt help the symptoms but seems to be helping the frequency of them.
But mainly my triggers are broken sleep, dehydration or bright light.
I will continue with the dried mushrooms

 

[Melian]

Hormonal migraine:

Aside from the pill (there are certain types you can't take if you have migraine) and the injection, does anyone else know what's ok to take? I've been pestering my GP about this for the last month and they've not even discussed it with me.

Struggling so much at the moment. Wasn't too impressed that I've had to beg to come off Pregabalin (it doesn't work and I've needed to come off it for the last 2 months - it was just increased instead) and had to beg to change what I take when I do have migraine. Can't have nasal sprays as I just end up with sinus problems and Sumitriptan just causes Raynaurds. I ahd to do my own research as to what else was out there.

Nothing has been put in place now that I've come off Pregabalin. I was told I should be seen by neurology soon. Unlikely. Still waiting for unrelated referrals that were made in February.