Toprimate

[Florida2020]

Hi folks,
Was diagnosed with cluster headache about 4 months ago. Was put on toprimate and it worked instantly, was delighted, after suffering headaches almost every day for 7 months , then almost none, the odd one but nothing compared to what they were like. However, they have come back, can't understand it! I am on lowest dose and worked a treat, why would it just stop working? The brand has changed and I have stopped taking the same magnesium alongside but have done this before with no change, anyone any ideas?
Julie

I was on Topiramate for complex migraine and it needed to be slowly titrated up. If you are on the lowest possible dose I would contact your doctor and see if they think you need to dose raised.

This also happened to me! I increased the dose but couldn't tolerate the side effects!
I added HRT which helped and then just accepted I had a reduction in migraine, it hadn't got rid of them!
Topiramate is currently unavailable so I had to suddenly stop them as could get them from any pharmacy!

It could be that your dose needs adjusting, or it could be that generics don’t work as well for you. A few people have issues with brand changes or formulation changes (capsules, tablets or suspension) of Topiramate and other anti-epilepsy meds. In theory it should be fine (all the same, right?), but for some people it’s not the case and they have issues.

It could also be something else entirely (wrong initial diagnosis or right diagnosis but you need to try a different treatment) but you need to go back to your prescribing Dr.

I couldn’t tolerate the side effects and ended up having to give up on them.

Lots of meds seem to be unavailable at the moment. The heart medication given for my main condition is seemingly unavailable nationally. No-one in the support groups can get any, regardless if they are GP or hospital prescribed. Can’t get hold of my HRT either, but then that’s nothing new these days.

@LynneBenfield That’s a really important point. There is a particular generic brand of my heart meds that myself and many other people with my condition can’t take, it’s as if we have suddenly been taken off our meds. Thankfully the hospital pharmacy recorded it as an adverse reaction, so they no longer prescribe that or anything without the same salts as the primary branded version for me now and that seems to have solved the problem.

Op you really need to contact your doctor, so they can help you work out what to do.

Topirimate is nasty stuff. You need higher and higher doses, it made me act out pretty weird and was horrible to stop taking.

I found with topiramate that one brand did not work for me and all others I tried we're fine so it might be worth trying to get a different brand?

It can have really unpleasant side effects and can cause issues if you don’t wean off it very steadily but lots of people are successfully treated with Topiramate. It can take time to work up to your therapeutic dose but once there, it shouldn’t need to be increased regularly (unless there are changes in your condition, in which case an alternative treatment might be more appropriate).

I have been on topiramate for nearly 2 years and had to gradually taper up to 100mg to ease my migraines; it still didn’t completely stop them but now I have HRT it has helped even more. Brand didn’t make a difference, just dose.
my neurologist also recommended a vitamin supplement that included B vitamins and magnesium.

This was the exact same for me. Unfortunately they couldn't get the brand that didn't affect me. The generic brands made me really aggressive. I'm sure the pharmacist thought I was having them on!

Thanks folks! I am in HRT. I feel it must be the brand change as they have been a miracle for me the last 4 months, with no side effects at all.

HRT did more for my migraine issues than anything I've ever taken over my 40 years as a sufferer. I lost a lot of hair during my 2 years on topiramate as well as weight gain, outspokenness and general feeling shit. Hair loss recovered now but I seriously don't like this stuff.

Me too @Remagirl glad your off them too! I felt awful, backed
in a corner and on high alert, couldn’t function - really made me unwell. I now have Botox every 3 mths 39 injections in my face, head and neck.

The stories about this medication online are horrific and can absolutely believe them!

Wow that's mad! I really felt it changed my life for the better, that's why I want to stay on it but don't understand why my headaches are back! ,😣

HRT really helped my migraines too, but then 6 months on I started to get severe migraines clustering together back to back for a week once a month. GP put me on daily progesterone, instead of just half the month, last November and that seems to have got me back on track. <<touches wood>>

I lost a lot of weight on Topiramate, which I didn’t mind at all, but it affected me really badly cognitively and by the end I could barely form a coherent sentence. I was relieved to stop taking it to be honest, but I do know other people it’s worked for.

I was finding that I had to constantly adjust the dose. Was told to go no higher than 100mg by audiology. (because of the effects on my hearing - I've got problems with the hearing in one ear)

I had to beg to come off this even though I was complaining constantly about the side effects. (As well as the hearing issues, I had constant thirst and everything tasted like metal)

I think you are totally right! This new brand is just not agreeing,I really think that's it.

I'm on this drug for epilepsy, never really had any side effects. And on a much higher dose then those taking it for migraine, strange how it effects people. Initially lost some hair but that's stopped.

CH is a absolute beast. It is one of the hardest of the trigeminal autonomic cephaliga group to manage and treat. I recommend contacting OUCH UK for further signposting to help you get the best out of your neurologist. Sadly CH a an punch through a preventative drug after a period of time. It may have been a quieter period between episodic bouts and you may have started a new nastier bout of CH. TBH push for a HOOF prescription of ultra high flow oxygen as well as sumatriptan auto injectors if you have not got them for actual attacks. Speak with your neurologist about the issues you are having. It is possible to have a specific brand of drug if the generics are causing you a significant issue. My pharmacy has a list of the specific brands I need and will move heaven and earth to track them down for me. Good luck from a fellow CHer. (Chronic migraine with ch )

I went back to docs and they have given me the original topiramate thankfully, although I haven't taken any since last Thursday. I am going to see if I can manage without them now. I am always concerned about taking them as I have glaucoma as well.