Topiramate/Topamax Making CH Worse?!

[Zoejarvis]

 

After 6 months of suffering from CH once, maybe twice every 2 weeks I was diagnosed with Cluster Headaches. The pain was so severe it was like nothing I had ever experienced before. I was to and from the doctors so many times and left with strange suggestions as to what it could be. After one night when I had 9 attacks on the bounce I went to visit the doctor again, it was then he advised it was CH and I was prescribed 25mg of Topiramate on the proviso that it would help improve the severity and frequency of the attacks (this was about 6 weeks ago). 

I had an MRI scan and I am awaiting results. My headaches have become more frequent now - I get at least one every day. I am waiting to see a Neurologist next month who will decide upon the best course of action (medication wise as I’ve heard mixed things about Topiramate or Topamax). There seems to be no trigger other than as soon as I get home from work?! I have noticed a change this week in that I have been getting attacks when in meetings or simply sitting on my sofa at home doing nothing! 

I am hoping some of you can share your experiences with me - have you seen a change in your attacks since being put on meds? Does anyone have triggers? 

Thank you in advance!

[MoxieGirl]

My clusters got worse while on Topiramate. 

The year before I started on Topiramate I had 63 clusters, and I thought that was a bad year. The year I was on Topiramate, they shot up to 257.  

So, yeah, not a big fan. 

Mox

[Zoejarvis]

Thanks Mox, I’m sorry to hear that happened to you! I don’t know what they will try me on next because this can’t continue, I’ve had 3 attacks today so far. Shame my neurologist appt isn’t for another 6 weeks! It’s nice to know by reading this forum I’m not alone! 

Have you found anything that works well to keep them at bay? 

 

 

[MoxieGirl]

Hey Zoejarvis,

The busting methods as we talk about here on the forum have worked wonders for me. Can't really go into details on the General Board, as it doesn't require a login to read. 

I'm still chronic, in that I get 1 or 2 hits a month. But they are so mild, they don't disrupt my life at all. 

Mox

[VocTeacher]

Last week my DR wanted me on Topamax I refused, The side effects are to extreme 

 

[Zoejarvis]

The side effects seem to have subsided but it’s not helping my clusters at all. They’ve become more frequent which unfortunately as you all know isn’t good. 

I’ll stick it out until I see my neurologist, I’m not brave enough for the whole busting thing! 

Appreciate your input guys, thank you! 

[MoxieGirl]

Zoejarvis,

When my clusters started, a friend on another board told me about Clusterbusters, and what they used to 'bust' clusters with. Like you, I shied away from it. I did bookmark the site, and said to myself I'd use it as a last resort. 

About 4 years later, after trying EVERYTHING the doctors could give me, and after being on Topiramate for a year, I opened my calendar and was selecting a date to kill myself. I decided I'd give myself 1 year to find a solution, and if things weren't any better, then I'd had enough. I was getting 2-5 attacks a day every couple of days at that point. 

Just as I picked a date, I remembered about this forum, and signed up. 

That was 8 years ago. To say busting, and the people here saved my life, is no understatement. 

By all means, try everything you can. Try everything you feel safe trying. And one day, if you find it doesn't work for you, we'll be here and will help where we can. I was nervous at first too, but I went slowly, followed the advice given, and am doing well.

Be safe my friend.

Mox