Topiramate

Hi David

I was prescribed Topiramate and after 6 months I requested to be withdrawn off it as the side effects were horrendous ie lack of cognitive function, slurred speech, double vision and dizziness to name but a few. It also didn't help with reducing the frequency of the headaches either. I have never been prescribed Sodium Valproate so I can not advise on that. Although my reply doesn't answer you question I hope it helps you in making an informed decision.

Regards , Dawn

Hi Dawn, Thanks for your reply i too are having the side effects that you describe and also like i mentioned it is just not working for me in stopping the attacks, i would be very interested to know what medication you are on now and if that is working in stopping your attacks? Regards David 

Hi David, 

It was only after I requested a second opinion from a specialist headache neurologist that I was recently diagnosed in August as a chronic cluster headache sufferer. I was immediately put on  the following treatment pathway: home oxygen, Greater Occipital Nerve Injections (I had one either side as on two occasions the CH did swap sides), Sumatriptan injections and Verapamil. I am already on Verapamil due to an existing heart condition and current dosage is 140mg. This will be increased fortnightly by 80mg when the go ahead is given by cardiology. Due to a delay in the transfer to cardiology in the area where my neurologist is, I have not commenced the increase in Verapamil dosage nor the Sumatriptan injections. From what I've read, Veripamil is good as a preventative but that's in higher doses than I'm taking now. Hope all that makes sense and apologies for the long winded response.

Regards, Dawn 

Hi Dawn, I was originally started on Verapamil which was succesfull as a preventative against cluster headaches but i had a bad reaction in swollen legs and ankles so had to come off it which was a shame,  i can recommend the oxygen and also the sumatriptan injections are really a life saver usually taking in my case 15mins to work but then can get back to sleep untill morning, good luck with everything, regards David

I completely agree with you Dawn.  I was on Topiramate for 10 years as a preventitive medicine and the long term damage is horrendous.  My ability some days to make a sentence was impossible and I spent many moments in a dark place in my mind.  My Nurologist changed my perscription but it took 8 months to withdraw me and change my medication.  I have also now been left with Nethogenic diabeties insipidus as a reuslt of taking topiramate.

Hi Nurobear, What did your Neurologist replace the topiramate with? out of interest because i have a meeting with my neurologist soon and desperately need to change to something else because like you i feel awful on this and dont know what to try next? Best Regards David

Hi David53,

Also had the same symptoms as described on Topiramate where I couldn't even find a four letter word on Countdown let alone string a sentence together.  Thankfully my hubby has private medical and I was able to see a fantastic consultant who started an immediate withdrawel plan and put me on Verapamil, oxygen and zomig nasal sprays (needle phobic so didn't fancy the injections!).  I found I was actually able to work through my cluster this year with this mixture of meds.  I was on increasing dose same as Dawn describes with my meds reaching high levels however I was monitored by my GP surgery with ECGs before each increase.  

Think next attack I am going to be trying Gammacore if the Consultant can get me access to it.

Hope you find something that works for you.

Hi David,

I am now prescribed Gabapentin, oxygen and sumatriptan injections

Hope you got some help from your Neurologist 

lisa

I got really ill on topiramate. Awful drug. Changed to verapamil and the improvements were instant. I have been on verapamil for 8 years and managing a lot better.