Part of me feels like I am going crazy. Time passes as I sit at my work desk, feeling totally doped up on medications just waiting for that last bell to ring and my students to leave.

My headaches are still undiagnosed...too close to migraines to be cluster headaches but not close enough to migraines to actually be migraines. Gah.  I am on a 2x daily dose of topamax and I can tell. Any experience with topamax and any advice on how to handle the weird sensations it brings would be greatly appreciated.

The dr. decided he wanted to try and break the cycle of every day pain by doing a 2x daily dose of 20mg of prednisone for 5 days (no taper....not happy about this) and a 3 day, 3x a day dose of Toradol. That almost made no sense to me, but Im not sure much makes sense anymore. I am semi pain free. I have moments during the day where I have to stop walking because I get the stabbing pain in the front of my head, but if I don't move much during the day everything seems to be aright.

I am more afraid of going off the prednisone with no taper tomorrow because I am almost positive the headache will come right back (I know.. positive thinking here..). Again, if anyone has experience with any of these medications, I would love some advice and some tidbits on how to handle the next few days.  :D

Thanks

Best to get off the Topamax! also known as Dopymax,
and talk with your doctor about Verapamil, 360-480mg
a day, this is a proven preventative in CH's, also Imitrex
auto injectors or oxygen will abort the  [smiley=evil.gif]
in 5mins.

Hoppy.

I was so dumb on Topamax I would get lost going to work and I worked at the same job for 10 yrs O2 is awesome and the D3 regiment is great.

Mark

Is your doc experienced with headache? The approach he is using is out of the main stream.

Usually Pred is started around 90mg, tapering down 10mg every other day.

At the same time, should be starting with a preventive med. Top. is broadly rejected around here because it's not that effective and leaves folks in a brain fog.

Verapamil is most widely used preventive with doses being worked up to, as high, as 700-900mg.

Print the PDF file, below, and use it as a discussion tool with him.

Or consider find a headache specialist.

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Well, it happened almost like I knew it would. As soon as we were done with the prednisone, I crashed and had the worst headache ever. I tried to get a hold of the doctor but didn't get much of a response. The headaches have been on and off all day with no help.

He finally called back this evening and said the next course of action is to try naratriptan 2x a day (2.5 mg) for 3 days and that will "hopefully" knock out the cycle. If that doesn't work he wants to try some nasal spray he has samples of in his office.

I am starting to lose faith in this trial and error method.. its only making me depressed and exhausted. I made an appointment with my headache neurologist from college, but I can't get in to see her for 3 more weeks. Here's hoping...

I know how you feel HeadsAtCamp!  I clearly have cluster headaches, but it is compounded by an issue my neurologist describes as something like cluster headache with concurrent aura migraine... basically, every time I get CH they also set off some fun vision-related migraines.  He calls me his "most interesting patient."  I'm not sure if that is condition or personality related, but I think probably a little of both.   :D

He treats me for the CH, which also treats the migraines, so from experience I would recommend to you to demand to be treated for the CH instead of migraines.  Topamax was bumpkiss for me.  I couldn't function on that stuff for about 3 or 4 weeks after starting it and it barely helped (I'm being generous with "barely").  Also, your current doctor sounds like he has no idea what he is doing, so I would consider seeing a different doctor.  These conditions are too painful for a doctor that a) has no experience with it, b) has no interest in learning about it quickly, OR c) has no sense of adventure in treatment.

My thoughts... if you haven't tried the Anti-Inflamatory Regimen, I would recommend you start.  If you have a good response to Prednisone, it will likely help.  I'm on AIR and it does the same work on me that Prednisone did without any of the side effects because it is vitamin based.  That being said, it is not 100% effective for me (neither was Presnisone), although it has proven to substantially reduce the number of CHs I get (I'm down to 1 per day when I normally would be at 7 or 8 around this time of my cycle).

I just started Verapamil, so I cannot yet speak to its overall effectiveness, but I have noticed that it seems to make the oxygen work as an abortive where it didn't before.  I think I'm going to request my dosage of Verapamil be raised from the 80 mg 3x daily I'm currently on and see if that stops them altogether.

Mygranal (an ergot-based nasal spray) does seem to help as an abortive, but that stuff is expensive!  It costs me about $1,500 for 8 spray bottles with insurance ($150 if I hit my $4.8K deductible :()!  I try everything else first, then use that as a last resort if nothing else works.  I miss Ergomar... *sigh*

Stay hopeful, my friend!  We must be the greatest advocates for our own health, so we cannot tire of trying new things.  If you get tired, you can lean on your friends here.  Someone is always willing to help you carry your burden.  We know it's heavy!

240mg a day of verapamil is a fairly low dose for CH, so there is the potential for a higher dose to help more but only increase it in consultation with your doctor. Most people with CH need 360-480mg a day and some go to around 1000mg a day!

It does take about 7-10 days for a dose change to become effective, so don't change things too quickly.

I sort of fired my last neurologist. After speaking with him last week, he put me on a three day regimen of naratriptan and another round of prednisone. I have had no relief from either one. I haven't had normal feeling feet in days (tingling constantly). The insomnia is really getting to me now (I live in the Chicago time zone and am writing this at 4 am  :D)

I am seeing a "headache specialist" on Thursday. He is a DO who helped start the Headache clinic at Baylor Univ in Texas and also worked at the Diamond Headache Clinic in Chicago so I am actually a bit hopeful. I feel like I am going crazy at moments. Today was my 25th birthday and I spent most of it in bed.