Took Hubby to Neurologist yesterday.  They are trying Topamx.  Also gave him Sumavel injections and Vicoden for breakthrough pain.  Still doing the d3 along with it.  Got the script for the blood test although not sure when he will have time to get it.

So, to my question......when I started him on the d3 he had the worst night.  Last night started the topamax and he did the injection which he said was wonderful.  After the injection wore off the beast came back with a vengence.  Two tens in a row and and seemed like the cluster was constant from 2 am until around 11 am with peaks in pain.  Finally broke.  Has anyone else had what seems like the beast is fighting back the treatment to try to keep it at bay?  Could we take this as a positive sign?

Lori

No sense being anthropomorphic about it. "The beast" doesn't have any will of its own. Our condition is, at times, subject to "rebound" type behavior. I always found that, while sumatriptan would knock it out for a time, the pain always returned with what seemed like a vengeance. All that taught me was to stop using sumatriptan.

My advice - keep with the D3 regimen (I hope he's taking the other supplements along with it), maybe stick with the Topomax (although I've never tried it, I've heard stories around here that validate its nickname, Dopeymax), and ditch the vicodin (which is another rebound causer, not to mention the dependence one can develop).

One always has to be careful not to try too many treatments all at the same time, especially when we become desperate for relief. And as always, that's easier said than done.

Similar thoughts to Brew. Skip the vicodin as it will cause rebounds and still not really touch the pain. Work on getting oxygen to abort the CHs.

Then work on the vitamin D3 plus keep the topomax going.

Don't feel alone. This always happens to me. The worst nights of CH I can remember have immediately followed trying something new (except 02). Including the D3 and busting. Looking back I feel I may have cheated myself out of something that might have worked. I just assumed that if it immediately made it that much worse how could it possibly make it better? That and the fact that with 02 I somehow manage to get by...

Don't give up on the D3. I stopped it, as usual, when it seemed to make them worse. But I started back and am in my 2nd week. It does seem to be helping, slowly but surely. More hits have suddenly disappeared before gaining a real foothold then they used to, and more are being aborted much quicker with 02. Less shadows overall too.

Hang in there. Hopefully some relief is on it's way.

Thank you for your replies.  He did not take the shot last night and didn't have as bad a time.  I think you are right about the shot and the vicoden.  He won't be taking them again.  Sticking with the d3, topamax and oxygen.

Scary part is these damned things have creeped into his work day, which they have never done before.  Hoping the treatment we are doing will help with that!

And lastly, Thank You Pete for taking the time to call us!  I think it helped my husband to actually speak to someone who knows exactly what he is going through.

Lori

Best of luck to you guys Lori.  I would welcome some comments from the rest of the community but you should ask your neuro about occipital nerve blocks.  Until the current flare up I'm in, they have kept me almost pain free for the year since I've discovered them.  Also on the D3 regimen but it hasn't quite taken effect for me yet.

Hi Lori,
My experience with Imitrex is to only use it sparingly, and only when o2 is not available.

The Imitrex tip will help achieve using it sparingly.

Hang in there.  You are awesome to stay by his side. ;)

-Gregg in Las Vegas

PS Agreed with others, lose the Vicodin!