I know there are so many posts on the following meds (and I have been perusing them for days.)  I just wanted to get any feedback advice on what my doc is doing now.  I'm in the sixth week of my first cycle of clusters ever.  I will never quit saying how thankful I am to have found this group of Clusterheads! 

I'm tapering off of the Prednisone (about half way through that), starting Topomax, and have used a Sumavel DosePro once.  I don't know what to think about the Prednisone - doesn't seem to have any vast side effects for me, but I'm not sure it's done much good either.  Of course, I understand that the Topomax has to build up in my system, so I don't know what to think of that yet.  The one time I used the Sumavel injection was glorious.  Total relief in about 6-8 minutes.  I'm a little concerned that the information says not to use more than twice in 24 hours or to treat more than 4 headaches in 30 days without talking to your doc.  That's a wide range.

Anyway - any info or advice is welcome!  Again, I'm just thankful that you are all here and there is someone to be in this thing with!

Hey, and sorry you're here.  But I'm glad you found this place during your first cycle.  This place has better, more up-to-date information than-- I dare say-- all doctors.

My last three cycles I've done a prednisone taper.  After three times, I'm convinced they overall make my CHs worse.  During the last week I get some PF days, and other days with CHs.  Then at the end of the pred I get overall more numerous and higher kip CHs.  I know that can be due to just changes in the cycle, but I've found such great success with abortives that I won't do prednisone again.

The Sumavel is magic for most people.  That's referred to here as imitrex, or "trex".  I take the inectable.  Never used the Sumavel delivery.  I'd definitely try it if it were cheaper!  Imitrex without insurance is super-expensive.  I'm chronic so I am not as worried about taking too much imitrex for a short-ish period of time (6-8 weeks).  There are some here who have had great results by taking the imitrex vial and rigging it to take a smaller dose (see "imitrex tip" on the left).  The problem with the trex is that you can get rebound headaches if you use too much.

Look at the O2 info.  The folks here have made great strides with O2 in the past 5-10 years.  I used it this last cycle with great results.  Absolutely no side effects.  So I used O2 while at home, but kept trex with me for when I was away from home.

I also had great results this cycle with beginning very intense exercise (I did "burpees") at the onset of the shadow.  Completely knocked out the CH!  Tried that last cycle and it didn't work.  So you never know.

There are also folks here having great results with supplementation.  Look for the post saying "123 days PF and I think I know why".

Good luck!

Mark,

Thanks for the reply!  Still finding encouragement just in finding the group!  I've got a lot more reading to do.  Very interested in the O2.

Thanks,
Justin

When Cluster is first showing itself (new case) it's not unusual for it to take months, even years, before a highly stable pattern of pain types, location, duration, etc. emerges.

At this early stage, I think it unwise to jump from med to med too often & quickly while trying to find an effective treatment package. Being patient while your body is making adjustments both to the disorder and the initial treatment plan is an essential survival skill!

Now, the Pred. If you have not had an almost total stoppage of pain in the first few days of starting the Pred it strongly suggests the need to start over again, with a higher initial dose. This is not unusual. Starting dose may run from 60 to 100mg.

Work with your doc closely re. your concerns. Quite important that he be up to date on your responses to meds and you will benefit from open dialogue around your concerns. There are many meds and combinations for Cluster. No single package gives 100% success for all people: Why it often takes time to find our personal approach.

See the PDF file, below.

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