Hello to all friends,
I have had clusters since the late '80s but was not diagnosed until about 10 years ago.  They are episodic and fall around the season changes so sinus and allergy issues were the named culprits by my docs.  So since 1987 this is the first time I am using medication other than imitrix and Advil for the headaches.  Prednisone did not work so my neurologist switched me to Topomax which seemed to kick in in about a day.  I am not a big medication taker and hate to take these meds but it far outweighs the pain as you can imagine.  Has anyone experienced any major short or long term side effects with Topomax.  For now I am mostly a little dopey at times, some dizziness, but mostly at night when I take the higher dose and some fitful sleeping.   I consider my clusters mild compared to a lot of what I read on the message board but I wish you all paint free days.     Craigster

Top. has been on the recommended list for a few years but its effectivenss has been modest. In addition, a number of folks here has stopped using it because of a vague mental confusion, which has also been reported elsewhere.

Suggest you consider Verapamil. Has a long track record of effectivenss and safety.

Print the PDF file, below, and use as a tool to discuss options with your doc.

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I will read it.  Thank you.  And yes, I noticed some of those mental confusion symptoms but I think I am at a low enough dose some of that went away.  I went to one neuro and topmax seemed to be her last resort.  I was not comfortable with that doctor so I switched to a new one who specializes in headaches and they mentioned that Topomax and verapamil were the drugs that she used.  Thanks again for the advice.  Regards.

Topomax was somewhat effective for me, but I had memory problems and didn't want to socialize while on it.  The drug effected my speech by making familiar words difficult to recall or pronounce.  I would just stop in mid sentence not knowing how to say the next word.  Stuttering wasn't uncommon either.  I work in sales and I couldn't have kept my job while on that drug.  I do hope it works out better for you. 

How did you take the Prednisone? It is usually taken as a 'burst' over a 7 day period and starting Verapamil at the same time. Verapamil takes about 7 days to build up in the body. Also ask your doc about lithium. Look into the D3 diet, oxygen, ice packs and energy drinks. Keep us informed.

I've been on topomax for 3 to 4 years.  100mg I believe. 
The side effects I experienced were minor and seemed to "go away" after my body adjusted.  This took several months.  The main side  effect was being cold or chilled, nothing an extra layer of clothing could not take care of. 

Thanks all for your insight.  bobg you said it took 7 days for Pred to build up.  My doc prescribed only 5 pills and no verapamil.  Unfortunately I did not have anyone's insight from this site when I went to doc.  The we're other clues this neuro did not have all the wisdom for clusters so I have since switched docs.  Hoping my cycle is winding down now.  Basically random kip1's with an all day buzz of a headache at the top of my head but only taking 25 mg topmax at nite with no other pain meds needed.  On day 3 of the prednisone I had a 2 hour clusterfest while with my daughter at accepted students day at the college she will be attending in the fall.  My new neuro gave me some supplements to take, similar, but not same as what I see on this site so I may try one of those as well.  Good days to you all.  You are all great people. 

It takes about 7 days for the Verapamil (not the Prednisone) to build in your system. The Pred starts with a high dose and drops to zero over about a week.

Congrats to your daughter being accepted to college.

I'm pretty sure I'm allergic to Topomax.  I took it years ago and it did stop my headaches but after several weeks I developed like hives or red bumps all over my chest and back, looked almost like shingles.  The only thing that was different in my life at the time was the Topomax, my doc at the time stopped it and the bumps went away.

Topamax was a life saver for me. And I took it for years and years and years.. without too many side effects (a little short term memory loss, but I'm OLD). To overcome the "dopey" feeling take the WHOLE dose at night (worked for me for years). I never had the dopey feeling and slept well at night.

My neuro recently (a couple years ago) switched me to Zonogran - he said it did the same thing as Topamax without the side effects. I take the whole dose at night and haven't seen any effects from it.

But since Oct 21st I've been on the Vit D3 regimen and have NOT had a CH (and I've been chronic since 97). I'm still taking the zonogran, but am going to have a little talk with my neuro about stopping it and seeing what happens.

But try taking the whole dose at night and then going to bed and see if that doesn't help. My neuro said it didn't hurt a thing. And I was on a high dose (300mg).  :-*

Thanks.  My new neuro did recommend taking the full dose at night.  25 mg seems to be doing the trick now so I am praying I am near the end of the cycle.  I basically have an annoying slight headache all day long.  Don't know if it's coincidence but I do seem to be forgetting a lot of words and losing my train of thought more than normal.  Not debilitating, just annoying at times.  And the Topomax takes down the filter.  Things just blurt out sometimes.  Friends, strangers, the meds don't discriminate.  Thanks for the support.  Always appreciated.