I have Chronic CHs (going on 4 years, I think-my wife knows).  I am on pretty high doses of lithium and dilantin and other stuff to help with sleep.  Thus, I am mostly pretty doped up, but CHs still break through though not as bad as they are w/o the meds.  

I have heard about prednisone helping to "get rid" of CHs, but I read a study that said they only cut 50% of the pain on some people and gave a very short remission, but generally the CHs return after the prednisone or methylprednisolone is tapered or ended.  It also discussed that one would need to be on the steroid for long periods of time to really derive benefit for the chronic kind and that the side effects were much too problematic for most people (even in cancer or other diseases, they know not to leave people on steroids).

Any physicians out there or anyone else with knowledge?  It would be much appreciated.

Long term use of steroids is not wise and folks with other Dx who must be on them for long periods do have some serious side effects. It works well, as you understand, for sort burts to stop a CH cycle while getting on better long term preventive meds.

Having a real expert doc is critical. If you have not identified such a soul start here:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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There are a few surgical procedures which are being tested but I don't have a sense that any of them are sufficiently safe and/or effective--but it's not an area which I monitor closely. This is why you need a real headache expert doc.

i have been on long doses of pred in the past, and the side effects are awful.  I will never do that again,   I will however go on a short round of them at certain times because they do offer a lot of relief,  say, maybe you have a vacation planned or something, or you need to buy time for a new med to start working then they can be great,  but dont go on them for too long because they are terrible ove r along period of time.

chrisw

There seems to be a small percentage of CH'ers who can actually abort a cycle of CH with a short "Burst" of steroids. For the rest of us, they are an effective short term break from CH while we wait for our prevents kick in. Like you, I use lithium as my prevent. It takes about 2 weeks to reach s therapeudic level in my body. I use a 2 week prednisone taper to get me over the hump while I wait for the lithium to provide relief.

Like Bob said, prednisone is not a medication to play fast and loose with, but an effective componenent in an overall management strategy.

Joe

I'm hoping it works for the short term.  I just started a short burst yesterday and thank whoever is listening for a day of only peek-a-boo with the devil today.  I'm in my second cluster for the season.  This year has been my worst and most unusual cylce so far.  I am usually a two time a year for 3 weeks at a time sufferer, but this year has kicked my butt....and made me realize how good I had it compared to some.  My doc has put me on preventatives, and now something to help me sleep, and the steroids to try and give me some break after this last month of non-stop.  No pain meds work, O2 doesn't work, so far nothing he has tried will work for pain.  I go see a headache doc soon to see if we can find something new.

Curious, how did you use the O2? Modern equipment and uses make O2 very successful for most of us.

What size regulator and what type of mask?

Thanks, Don

To be honest, I don't recall, and wouldn't know the difference since it was the first time I had tried it.  It was in the docs office, and I was on other drugs earlier this year in my first cluster of the season so I was pretty doped up at the time.  My doc is already admitting defeat with me, and sending me to a neurologist since he can't figure out what to do for me since even heavy duty narcotics given IV don't do anything when the peaks hit.

This has been a miserable season.  I had about 3 weeks off since February other than that it has been pain each day.  I never was a night time sufferer, but now I am...and the wake up each hour with pain is the pits.  If I can sleep through the night I can handle the pain during the day, but without the sleep I can't do it.  

Just finished my steroid taper.  Verap in charge now.  Only a few light breakouts at night which I abort with O2. Hope the trend continues.

Steve G

Hello,

           Preds have saved me in the past, but like everyone else their side effects are BIG. As bad as the Preds are, im willing to trade life long problems rather than suffer from even 1 more of those god damn headaches.


                                   Coach Bill

Thanks everyone.  

Other info:  I have the chronic kind.  They stink.  They are exacerbated by sunlight, flashing lights, etc., so I pretty much live in a blacked-out house at night and do not go anywhere.  If prednisone might help that, then yippie; however, if it does not, then I guess I tried it.  The thing is that steroids make my heart race, jump, and skip beats bad so I hate them.  Also, I seem to be on the CH bonus program because I have atypical "trigeminal" neuralgia on the top branch-the cluster branch.  This makes it slightly sting to hurt all the time.  I also do have a good neurologist who has other cluster sufferers (some from out of state), but he thinks I got a "bum deal" with mine.  

Prednisone is a mixed bag for stopping CH cycles.  I've used it as a part of my "stop the cycle" regimen, ever since I was formally diagnosed with CH in July 2005.  Having used it once in 2003 to deal with a severe Asthma attack (I also suffer from asthma), and watched my father take it in 1991 as a part of his Chemotherapy regimen, when he was dealing  with non-Hodgkins Lymphoma, I was aware of its side effects.  In spite of it, the side effects can still be a bit off-putting.  While taking Prednisone, I've experienced increased appettite.  My Pred regimen length has always  been 1 week.  For the first 3 days, I usually end up feeling revved up - almost like somebody on speed.  For the last 2 or 3 days, as the dosage decreases, I usually suffer from a sort of low grade depression - I get the blues bigtime.

The Prednisone stops the headaches most of the time (the times it hasn't, I've had some pretty nasty Kip 8 and Kip 9 attacks).  As for stopping the cycle - welllll, yes and no.  For the first 2 years after I was diagnosed (in 2005 and 2006), typically a course of Pred stopped the cycle.  In my early 2007 and late 2007/early 2008 cycles, it took 2, 1 week courses of Prednisone.  Since my late 2008 cycle, my Neurologist (who's also a board certified headache specialist), won't give me more than 1 course of Pred, due to recent, increased concerns about Pred side effects, and prefers to use meds like Lyrica, and Methergine to keep CH from re-occurring, if it comes back after a course of Prednisone.

Say Ellenjoanne, could you also give me input on the pattern of your headaches, as in, what kip scale they usually are without treating them and with treating? how often and at what times are they happening?

Thank you in advance.

Any more people that their headaches has been stopped for long time when using steroids? I especially wonder if they stop shadowing, because I have consant (pressure on my eye on the side that gets pain, and electricity 'pinching' every now and then) which is annoying, very.

:( Prendisone did not work for me.  I'm on the taper now have 4 days left to take, but I got slammed last night.  I found if I drink energy drinks I can keep the beast at bay for a while, but not forever.  I had a good weekend, so I got a couple of days off, but I paid for it last night and today.  I see a neurologist in two weeks, here's hoping that I feel better by the time I go see him.