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
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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'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.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
(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!
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
I forgot my phone number the other day, its been the same for 22 years
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!
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!
I have clusters as well,I am prescribed sumatriptan injections which work pretty well to take the edge off them.Hello you lovely lot, hope everyone is doing well xx
I'm still waiting for my neurology referral (only 2 months left to go
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!
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.
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.
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No affects with alcohol but it makes everything yaste horrible. Gives you tingly lips and pins and needles. And keep ur eating up as it causes rapid weight loss. I lost 3 stone on them.. amazing for migraines but if you love fizzy drinks you are in for a wild rideHi 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
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For my migraines now...and I am not a doctor. I rub deep freeze on my forehead only thing that works for me now
I have been suggested these before but apparently I need to be diagnosed professionally before they can discuss this further
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Wow 22 years?! Blimey!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
I do get what you mean about 'pushing' it out, sometimes I feel like it's never going to get there and then they're just gone!
My issue with medication is risk of harm to a baby - although I am not currently ttc, we have it in our near future plans and my doctor is aware of this so doesn't want me on most medications which is making things worse.
I've booked a call with a triage doctor monday in hopes they can either speed up my referral, or prescribe me something to help ease things a little while I wait
Thank you for your help both xx
You won’t be given topiramate if you are or thinking of ttc. I would ask for oxygen or Gammacore. The Gammacore can either work as to stop the cluster mid flow (like oxygen) or as a preventative.
Sorry you are struggling
Sorry you are struggling
Sorry to hear you are suffering. How often are you taking Naproxen?Hello you lovely lot, hope everyone is doing well xx
I'm still waiting for my neurology referral (only 2 months left to go
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!
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.
Thank you so much for this!
So I've been recommended naproxen twice a day, which doesn't seem to be doing anything I can't lie, and I have only been taking them for the past 4/5 months so before that I was cold turkey.
Funny you say that the naproxen might be triggering them as since I have been taking them, the headaches/ migraines have been lasting longer and also so much more painful! I have a call this afternoon with a triage doctor / pharmacist so discuss what changes I can make while I'm waiting for my appointment from neurology
xxI wouldn't touch this stuff with a barge pole ever againHi 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
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
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?
Just had the suggestion of Botox along my neck and head from my consultant. I'm a bit reluctant.....has anyone else had it?
lve gone back on Botox,the first lot doesn’t work for many but after that it has good results for me.it reduces the amount of migraines I get massively
I'm on Pitzotofien and GONI (greater occipital nerve blocks)
Not had any major issues with either
I’ve been having Botox every 12 weeks for the past 19 months and it’s been a life saver. Yes is still have lower level daily migraines but it’s nowhere near as bad. I have easily had my pain halved. I was lucky that it started working pretty quickly as they do say it can take a while to work.
I will admit I don’t like the injections, sometimes they are more painful than other times