OK. I hate to keep complaining but......I'm in month 3 of this 2nd round cycle (first round was a mini in October). this is the worst cycle I've had, blah blah, you all probably read my other posts whining. Probably not nearly as bad as many of you have it. Anyway, I'm on Topamax 200 mg day, Verap 120 day, finishing up a Pred 3x3, 3x2, 3x1, 4x1/2, O2 as needed, Sumavel shots more than usual (1/week now), Cambia with the Sumavel. 2 Red Bulls in the AM to thwart the morning shadows. I still have breakthrough pain in the PM, mostly during the day as well, the Verap hasn't kicked in yet, and the worst part is, I feel like total garbage. I mean I just feel awful. My head feels terrible, foggy pain, breakthrough pain. I've lost 14 pounds in the last 5 weeks since I can't stand food from all these meds, I'm tired all the time, my eye hurts from the pain, hard to see, I'm grouchy, then sad, then crazy happy and jumpy. It's insane. I don't feel depressed, but just mopey and plain old awful "general feeling of malaise" as my wife says. is this the pain getting the better of me? The meds? Both?

Man that sucks.  I have to admit, if I was getting hit that often AND on all those meds, I would feel pretty shitty.  I know that switching my triptans to intranasal ketamine seems to have made a good difference in my clusters--can be a hard sell to a lot of doctors but he's GOT to realize that this isn't working for you.  And nobody can promise that it will actually help...I think the biggest thing I would recommend is those RC seeds, but I'm betting that by now somebody has already thrown that idea at you.  Hope you get some relief, keep us posted.

-Ricardo

Could it be too much Topomax and not enough Verapamil?

-Gregg in Las Vegas

Topamax has always worked on me. And it was working during the increasing intensity of this cycle. As the cycle got worse, though, it broke through. The doc is deciding whether to go to 400mg on Topamax, increase the verapamil, or do both. given my positive reaction to the topamax in the past, I think using that is a good call, and the verapamil definitely tamped down the pain from where it was 2 weeks ago, even as the prednisone has been tapering down.

Topomax may be the only CH med we can be on that will result in weight loss rather than weight gain. I sorta liked that until I just kept dropping and had no energy left. I also didn't like the way it produced 'holes' in my memory. Given all of that, though, if I thought it would be my best or only option, I'd return to it in a heartbeat. Mike, I began to drink stuff like Ensure to be certain of a high enough calorie count in my diet. It helped somewhat. Perhaps there is a combination of felt side effects here, some relating specifically to the weight loss. I do understand not wanting to eat, but maybe you need to count calories? It could be part of why you feel so crappy. God bless. lance

I'm at 240 x 3/day Verapamil.  This won't make you feel like garbage any less. It has dampened the frequency and the intensity.

See your doc.  Do your best.  It will end.

Steve G

I'm down to the 1/2 of Prednisone tonight for 4 days. I talk to the doc on Tuesday, let him know I'm no better. I think we'll talk about upping the Topamax first, see how that goes. I am now almost 2 1/2 months into this cycle, which is also worrying me. I just ran 5 miles this morning, after spending the day on the couch yetsterday. First day of work I ever missed due to the beast, which also is worrying me. I felt great during the run, as usual, and right after, but as usual, 2 hours later, and I'm ready to die, even after sleeping 1/2 the day away yesterday, and sleeping well last night. The pain sits just below the surface, I can feel it there, the fullness, the dullness of it, and the eye pulling and blurry, with the occasional tension in my right nostril indicating a bout coming on. Usually by now, the cycle is ending, and I'm tapering, so I just don't know what to expect here. Luckily, I have a cabinet full of drugs and my HSA is building nicely to pay for more if needed. I guess that's something to be thankful for.

Not that I'm saying this is the case but verapamil made me jumpy and shaky and feel like crap at only 40 mg per day and at that dose did nothing for CH.....Just my experience.

Also be careful with red bull when your on verapamil , it can cause heart palpitations if you drink too much of it...not a fun experience especially with every thing else you've got going on .

Hang in there , the end will come.

God bless

Nigel

Your verapamil seems low, I would try upping to 360. Only choice over the increase in topamax has to do with side effects, I personally get less from verapamil.
Good luck.