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cluster headache season extended? (Read 455 times)
Janus9975
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cluster headache season extended?
Aug 13th, 2019 at 7:04pm
 
First post, always resisted registering for an account because I didn't want to think about CH out of season.

Well, this year my season started on the first day of spring and...never really stopped. It's typically 2 - 3 months for me but not this year. I haven't had a real CH since June, but the shadows haven't stopped. This is new and awful. Trust me, I'm very thankful I haven't had a real headache in months, I just don't know what to do with having daily shadows. Normally I'm 99% - 100% asymptomatic out of season. Not this time.

Went to a new neuro to establish care a couple weeks ago and he started me on Trokendi. I tried out the doses, ramped them up like he said, and if anything it's made things worse. Plus I also have trouble thinking things through now. My head just feels weird and raw on this med. Like how I imagine a microwave burrito must feel.

Has anyone else experienced a season that didn't end like it was supposed to? Or shadows that occur out of season? I don't want to sound like I'm whining, as shadows are WAY better than real headaches, but something is different now and I don't know why.

Thanks for sharing your experiences.
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AussieBrian
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Re: cluster headache season extended?
Reply #1 - Aug 14th, 2019 at 10:27pm
 
Aaagh, the never-ending shadows! Only ever happened to me a couple of times but I know just how you feel and it ain't good. They just wear you down til they wear you out.

Horrible things.

I got a lot of help by using a half dose of paracetamol washed down with a serious cup of coffee. Worked fine by day but useless at night, of course, but better than nothing.

Incidentally, no-one here would ever think you're whining because we all know too well what this beast can be like.

Hoping tomorrow is a better day for you,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: cluster headache season extended?
Reply #2 - Aug 15th, 2019 at 4:31am
 
Trokendi is a brand name for topiramate which is often called by multiple other names with dopymax being common on these forums as it can have significant cognitive impacts. I've tried it and it had the same impact on my thought processing capabilities. The one good result was that I lost weight as I was forgetting to eat.

As for your CH cycle being extended, this can sometimes just happen as CH can be changeable during a cycle and between cycles. So whilst some people get very obvious patterns to their cycles, for others it can be very changeable. We've not worked out why this happens.

Shadows are best treated as just being low level CHs, so you can use oxygen / imitrex / paracetamol or even things like Red Bull and other energy drinks. Whatever works for you.

Remember we all know all too well what it is like to have CH, especially CH which isn't controlled, so nobody will ever say you're whining.
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Janus9975
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Re: cluster headache season extended?
Reply #3 - Aug 15th, 2019 at 7:06pm
 
Thank you both for your responses!

I hate that other people are suffering like this but in a weird way I'm glad I'm not the only one this has happened to. This season has definitely been the worst for CHs I've had. I had a few kip 9's that had me thinking some dark things (when I could think at all that was) so I'm not too surprised that the season came with an extra long shadow kicker.

I'll treat them like low grade CHs and try out paracetamol, which wikipedia tells me I can find as acetaminophen. Here's to hoping my remission period starts soon. Thanks again, wishing you both pain free days!
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Graemel
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Re: cluster headache season extended?
Reply #4 - Aug 22nd, 2019 at 9:05pm
 
I have just posted on another thread but I now understand what is meant my shadows. Yes I try and treat with ibuprofen or paracetemol. The shadow just stays with you. It has turned my life upside down for sure. The bad CH also had me in a dark place.
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