Coming off Topiramate - terrible headache.

[jasperc163]

Anyone here come off Topiramate due to side effects and found that their headache is much worse than before they went on it? In an absolute state and nothing (triptans etc) is helping - i have had a constant headache for 8 months but the issue now is that it is at a level that I can't cope with or function at all. Is it likely temporary (stopped 3 days ago, having tapered down from 50mg) or am i going to be forced to go back on it because i can't exist without it

Help please?

[mimzlianne]

Hi!

I've just came off Topiramate (50mg twice a day) last week because it wasn't working for me. I've just been put on another anti-epileptic med to try. I get migraine quite badly so I desperately need to find something that works.

At the moment I'm not feeling too well the majority of the time but I'm hoping that's just a withdrawal from the Topiramate and because I'm not at the dosage I can taper up to yet.

I had a withdrawal from Nortriptyline back in April - emotions all over the place, couldn't sleep and couldn't concentrate - but it settled down after 1-2 weeks. I hope yours will be temporary as well!

Maybe give it a few weeks to settle down before going back to see your doctor about alt. treatments/medications?

Hope this helped.

[jasperc163]

Hi Mimzlianne,

sorry to hear you are still dealing with it. I am actually still on Nortripthyline (only 20mg) but tbh i am not sure its doing anything at all. But it's not causing me as much trouble as the topiramate so leaving it be for the time being. What have you been prescribed? Neuro gave me a prescription for sodium valproate this week but i said i wanted to wait and see if i can do without it (worries re weight as i even managed to put some on with the topiramate /nort combo! but also that it is bad for thyroid which is another issue for me as just started on thyroxine.). Topiramate was helping at 50mg (at night) for me but not enough to give me my life back and I was getting a mad side effect of bright red face/overheating/blushing all the time (problem at work!). Do you feel your head is worse atm than before you went on topiratmate? Mine certainly is. Desprately hoping it is temporary but worried it isnt

[glamourpuss in reply to jasperc163]

Hello ladies , jasperc have you considered increasing your dose of nortriptylin as 20 is low . I've been on this 6 weeks now and about to increase to 40 tonight but after trying all the meds and 2 Lots of botox this drug has helped most. The last 2 years have been hell with diblatating migraines and muscular pain and so many awfull side affects from drugs . My neuro said work my way up to a max of 200 ! Seems v high and hopefully I won't have to go that high . Maybe try it ? ! All the best

[jasperc163 in reply to glamourpuss]

Hi Glamourpuss - glad to hear it is working for you. I did go up to 40 but get no benefit beyond 20 for some reason (at 40 i actually ended up with such bad headache that I had to go on high dose steroids), and it starts to make me dopey. The wierd thing is a noticed a difference the first day after 10mg but then never got any further improvement (or sustained the initial improvement). Where it think it has helped is with muscular and neck pain that I was getting.

[glamourpuss in reply to jasperc163]

Hello , that's interestering to know that you got no further improvement as you increased. It's weird how some drugs are great for some and terrible for others . Did the steroids help you? I found they helped my back and neck but made no difference to the headaches and migraines. I hope you find something that helps soon . It's all an experiment were the words of my neuro !

[mimzlianne]

Hi Jasperc,

I hope that the Nortriptyline works for you and this is only temporary so it doesn't affect you and your work!

I'm sorry to hear that the Topiramate wasn't working for you

I've been prescribed Zonisamide by the neurologist... Hopefully it'll work.

I didn't actually get a benefit from the Topiramate (just a slight decrease in attacks but it's not enough for uni). My head does feel just as bad as before I was on them.

Have you tried many other medications/treatments?

[jasperc163 in reply to mimzlianne]

Hi Mimzliane, how are you getting on? any improvement with the zonisamide? I'ts now a week since i stopped the topiramate. Headaches are terrible - much worse than before I went on it. Just dont know what to do!

[mimzlianne in reply to jasperc163]

Hello!

I hope you're doing well.

I haven't found any more improvements on the zonisamide than the topiramate unfortunately (although I've been told it could take a 1/2 more months to work). A friend has recommended trying alpha stimulation (journal research has supported an improvement with some people) so I'm currently trying that alongside the tablets - It seems to be working in conjunction with the zonisamide but only with slight benefits.

Side effects are quite similar to topiramate but I haven't noticed anything apart from shifting from being unhappier at times.

I was given almotriptan for a time (to be taken when you get a migraine) or been told to take alka-seltzer to relieve the pain and symptoms... Have you tried them yet?

I hope that your neuro and GP find something that works for you!

[jasperc163 in reply to mimzlianne]

hi mimzlianne, sorry to hear that you haven;t had any luck with the zonisamide. I am not on anything at the moment, thought i was just about coping though still constant headache but getting worse and just dont know what to do. Neuro wants to refer me to some top bod at National Hospital of Neurology at UCL but from what i can see it is just more drugs or holes/implants in your head So desperate and I am trying everything!!! Hope you get some joy soon....

[jasperc163]

Hi - sadly been on the nortriptyline a while (before topiramate) so i know its not doing much. My neuro hasnt mentioned zonisamide - looks like a possible. What side effects have you been warned about? or did you not have any problems in that area with topiramate. Been on amitriptyline early on (no good and a zombie) and also had occiptal nerve blocks (didnt work and possibly made me worse). Good luck with the new drug - let me know how it goes as may ask about it if things dont improve pretty fast as i cant manage like this.

Anyone else come off topiratmate?

thanks

[strawb71]

Hi Jasperc

I came off it about six months ago along with all related medicines, and the first month was awful. I stuck with it despite all the pain and sickness, and as much as I still have cluster headaches, I don't feel they are any worse than they were before I took Topiramate. (I was on a dosage of 200mg a day) I now take nothing at all, but have Imigran 6mg injections to help with attacks.

I really hope you start feeling better soon.

[jasperc163]

Hi Strawb71 - thanks alot. Do you mean that you had bad withdrawal for a month after (having tapered down from 200)? That's scarey. I am doing slightly better today (last 2 days were hideous and I was thinking i was going to have to quit work) so just hoping the worst has passed and that it was withdrawal.

How often do you get Imigran jabs? My triptan usage has been too high this last week (while coming off the topiramate), just hope it calms down as only meant to take 3/month.