Hello! I am new to the site and thankful to find that I am not the only one suffering with this type of headache. I started having CH when I was 19. Was put on Cafergot and Sansert. Cycle lasted about 6 weeks. Years went by with no episodes. Had one about 5 years ago, cycle lasted 4 weeks. I am now 2 1/2 weeks into my current cycle. Saw my PCP who stated me on 240mg of Verapimil and Imitrex nasal and inj. Then she increased the Verap to 300mg. Saw a Neurologist who put me on 100mg of Prednisone with a taper and changed my Verap to 3 80mg pills per day. I started that yesterday afternoon (Ok per MD). About 30 mins after taking, I had a headache. I had been having one episode daily in the evening either before bed or an hour or so after sleeping. Yesterday I had the first during the day. Thought it was a fluke so I took the second dose of 100mg Prednisone and an 80mg of Verapamil this morning. Again, 30mins later, I have a CH, about a 7 kip. Had to take the Imitrex inj to stop it. Have already left a message for the MD. I don't want to continue the prednisone if I will get a headache after and especially don't want to add another headache when I was dealing with one per day. Anyone else experience a headache after taking the prednisone? I think I had more success on cafergot. Waiting to hear back from the MD. Any suggestions??  :'(

I got nuthin'. Beginning a prednisone taper always stops my hits cold in their tracks.

I'm with brew, pred provides 100% relief for me, I use it on a taper while I wait for my prevent, lithium, to kick in. Hang in there....hope the doc can figure this one out.

Joe

Thanks for your responses. Still waiting for MD to call back. I realized it was the Sansert that worked not the Cafergot. I must be in that 30% that is non responsive to prednisone. We will see...I am hopeful!

mizro wrote on Sep 3^rd, 2009 at 5:25pm:

..... I must be in that 30% that is non responsive to prednisone. ..............

Wow, I would have guessed that it worked for a FAR higher percentage of people than that.

Where did that number come from?

Marc

30% sounds like the non-response stat for stuff like Zyrtec or Allegra.

I saw in some article about Prednisone working for 70%. But I have been reading so many articles, I may have the incorrect information on the percentages. Of course, I can't seem to find it now. :-/ :D :-[

That is pretty unusual, but if Pred does it, I would stop it, and go with cafergot. I would try Lithium + Verap too, and eventually Clusterbuster stuff.

MattyAA wrote on Sep 3^rd, 2009 at 7:19pm:

That is pretty unusual, but if Pred does it, I would stop it, and go with cafergot. I would try Lithium + Verap too, and eventually Clusterbuster stuff.

Not a good idea to stop it WITHOUT talking to a doctor first. You can end up in a steroid crisis if you come down off of pred too fast.

(I've been in one, it can kill you.)

I have no idea if it works for me, as my response to it is hives and anaphylaxis. (Don't ask how, my allergist does not understand it, and no one else does either.)

Not a good idea to stop it WITHOUT talking to a doctor first. You can end up in a steroid crisis if you come down off of pred too fast.

I should preface more of my statements with this! Sounds like you're already traveling this road based  on your waiting for the docs response, but NEVER stop, start, increase, or reduce meds without the doc's knowledge. We deal with some pretty high horsepower stuff, nothing we should play fast and loose with! ;)

Joe

There are some meds that, stopping them immediately, are merely a bad idea.

There are others - like prednisone - that, stopping them immediately and abruptly, can be downright dangerous, like Mystina described above.

My doctor told me that a person can start a prednisone taper and stop it abruptly after about 2 days with little risk, but once you've been on it for 3 days or more, you need to finish the entire taper. Otherwise some really bad shit can happen.

hey mizro,
I did not respond at all to prednisone either.  I got no relief, Not one headache less (or less brutal for that matter) - but all the nasty side effects.
I tapered off though - It is Very important!!  Your body stops making natural steroids and you can cause very bad things to happen if you don't taper VERY SLOWLY off the drug so your body can begin making them again.  Make sure to work with your doc, of course!   ;)    8-)

Val

I only did Pred once several years ago.  During the taper I was PF.  As soon as the taper was over, the headaches came back almost immediately and worse.
Gained a crap load of weight too in just days.

Thanks all. Spoke to the doc last night and he wants me to stay on the prednisone. If I get a CH this morning after taking the prednisone to call him and then he would increase the verapamil and get me some more imitrex inj. I did have another CH last night about 7:45pm. Was having 1 CH now having 2.  :'( Took the Prednisone about 30 minutes ago, so far so good. Trying not to focus on it and do other things. Will keep you posted.

Hey - good luck to you.  Predisone always worked for me from the first dose.  I'm sorry you are finding it rough going.  I did also find that as soon as my "threshold" dose was passed on the way down in the taper, the HA"s would come back, and come back stronger than before.  So I hope whatever you are ramping up on (verapamil) is taking effect.

good luck!

mizro wrote on Sep 4^th, 2009 at 11:04am:

Thanks all. Spoke to the doc last night and he wants me to stay on the prednisone. If I get a CH this morning after taking the prednisone to call him and then he would increase the verapamil and get me some more imitrex inj. I did have another CH last night about 7:45pm. Was having 1 CH now having 2.  :'( Took the Prednisone about 30 minutes ago, so far so good. Trying not to focus on it and do other things. Will keep you posted.

Please do let us know.

The various forms of Pred are the "wonder/curse" drug that will give us CH'ers a short break - but it will cause bigger problems over time, so we can't continue it.

Typical response is CH free in 24-36 hours at the appropriate dose - should ALWAYS be taken in a prescribed tapering dose as a temporary preventative - not "as needed" for an attack.

The taper is critical after taking it for just a few days.

ALWAYS work closely with your doctor on these things.

Just cuirous......how long are you usually on the prenisone taper.  Just finished a two week taper and started to have 2-4 hits a day.  Calling back tomorrow for more prednisone.

You don't want to be on prednisone for long. It is intended as a stop-gap until other, safer preventative meds reach theraputic levels. Are you on any of those?


Quote:

Short-term side-effects, as with all glucocorticoids, include high blood glucose levels, especially in patients that already have diabetes mellitus or are on other medications that increase blood glucose (such as tacrolimus), and mineralocorticoid effects such as fluid retention (it is worth noting, however, that the mineralocorticoid effects of prednisone are very minor; this is why it is not used in the management of adrenal insufficiency unless a more potent mineralocorticoid is administered concomitantly). Additional short-term side-effects include insomnia, euphoria, and, rarely, mania (particularly in those suffering from Bipolar I and II). Long-term side-effects include Cushing's syndrome, truncal weight gain, osteoporosis, glaucoma, type II diabetes mellitus, and depression upon withdrawal.

Go to wikipedia.org and type "prednisone" in the search field, then start reading. Two weeks is plenty.

Cycle started two weeks ago....dr put me on lithium (900mg).  My last cycle I had great success with it......going to call dr. to see what he thinks about one more week of prednisone.

Or possibly ask about combining the lithium with verapamil. They don't call it the "chronic cocktail" for nothing.

I'll ask him about it...thanks.

Hello all!
Here is the update. Took 80 mg verap and then went to church on sunday. Decided not to take the Pred until I returned just incase the headache decided to come during service (didn't want to run to the bathroom to shoot up. Felt a lil odd at church. haha) During the sermon started to feel the headache coming on. Left church early, went home and took the Pred. Headache gone within a matter of minutes!!! It finally kicked in! Slept alot on Sunday. Went to bed that night after taking my other doses of Verap. No headache! Have been headache free since Sunday!!!!  ;D Whooo hoooo! I am now tapering down on the Pred. 60 mg for the next 3 days, then 20mg then 10mg. I have about 9 days left on the Pred. The side effects: I feel dopey!  :o BLOATED! My face is as round as a pie! I am out of breath easy (I also have asthma so this is not helping my breathing but I am handeling it). I am just tired alot and want to sleep. Having weird dreams but no headaches. Its the best of the worst I guess. I see the doc again on Thursday. Thanks for all the responses. Will keep you updated. 

The previous cycle I had (almost 2 years ago now) I did a prednisone taper and it stopped the cycle. Was amazing! This cycle I am currently in (for over 3 months now) I tried a prednisone taper a month ago and it seemed to not have any affect at all on this cycle. I guess it seems hit or miss with me, but you know... next cycle down the road... i would probably try it again. Anything that would end it quickly, you know?
However, i am now on a larger dosage of verapimal, 480mg a day, and I have been PF for a little over a week.  :D

I've been starting Prednisone therapy (60mg-60-50-50 etc daily ) at the first sign of a new CH cycle and for me it takes 1.5 to 2.5 days before the cycle and headache intensity are affected. I've also learned that taking prednisone in the evening or at night messes negatively with my sleep big time so I now always take it in the morning.

I'll be visiting a new (to me) CH neuro in October and will bring up whether starting at 60mg is enough, as well as her insights on other helpful subjects found in these forums such as melatonin.

BudO wrote on Sep 9^th, 2009 at 2:07pm:

I've also learned that taking prednisone in the evening or at night messes negatively with my sleep big time so I now always take it in the morning.

There's a reason for that. Your adrenal glands produce a big surge of corticosteroids when you wake up in the morning, and prednisone is replacing that during the taper.

A doctor prescribing prednisone should tell you to take the entire dosage in the morning, replicating the body's natural production. Unless there's an application that I'm not thinking of.

My husband's pred dosage is 20mg pills--3 a day for 3 days, 2 a day for 3 days, then 1 a day for 3 days.  Pretty much impossible to take them all in the morning.

CH wrote on Oct 26^th, 2009 at 11:24am:

Pretty much impossible to take them all in the morning.

Why?

I'm assuming since you are new to the site (like me) that this was your first prd taper? perhaps you should ask Doc to do the pred taper with nothing else? I hd yearly cycles for 15-20 years until I found this site and heard about pred, no dr had ever mentione it. The first 60 mg I took stopped the headaches for the day and killed the cycle for the year after completing the taper. I have found now after 4 or 5 tapers over the years (remember I'm a periodic and get ch every year for 4 to 6 weeks around now like clockwork) I started my cycle 2 days ago got a presc. for taper pred and no headaches. but who knows about what happens after the taper begins, last time at about 30 mgs stopped working.
No health ins now  so no imitrex, but I get 8 or more attacks in cycle so imitrex can't fix them all.
I pray for a cure. Feel free to e-mail me for any support

First, I just found it odd that after two pages of responses, I saw no mention (maybe missed it) that FIRST you take prednisone, THEN follow up with Verapimil, not both at once. You take your burst or blast to stop the cycle, then follow up with a preventative to ensure it's been stopped. My specialist at the head pain institute which specializes in clusters was very adament about this. Never heard anyone taking both at once. Very well could be the problem. With that said, I too had no attacks while on prednisone. The very first day after the last tapered dose, and the start of the verapimil, I am back to at least 2-3 shadows a day and one mild attack, like a kip 4-7. Waiting for the verap to do it's thing. Only been three days now.

remission lover wrote on Dec 17^th, 2009 at 5:18pm:

First, I just found it odd that after two pages of responses, I saw no mention (maybe missed it) that FIRST you take prednisone, THEN follow up with Verapimil, not both at once. You take your burst or blast to stop the cycle, then follow up with a preventative to ensure it's been stopped. My specialist at the head pain institute which specializes in clusters was very adament about this. Never heard anyone taking both at once. Very well could be the problem. With that said, I too had no attacks while on prednisone. The very first day after the last tapered dose, and the start of the verapimil, I am back to at least 2-3 shadows a day and one mild attack, like a kip 4-7. Waiting for the verap to do it's thing. Only been three days now.

With all due respect, that's complete bullshit. You're the first one I've seen here that claims they can't be taken together. The idea is to get immediate benefit from the steroid and allow the 10-14 days it takes for verapamil to build up to theraputic levels in your system.

Every doctor I've seen who has prescribed for me has done it this way, and dare I say, just about everybody else on this site has had it prescribed that way.

Well, I have to go with the majority then don't I? I am gonna have to check my paperwork, doses and such from the doc. Is it just the indomethacin I'm thinking of then? That I know for sure without checking was NOT to be taken while on prednisone. I was just so sure it was the verapimil too.

I don't know. I've never taken indomethacin.

I'd be more concerned with having a doctor that doesn't know this basic treatment approach. I apologize for unloading both barrels on you at once - we all want to think our doctors know what they're doing. It's just that, if indeed your doc is thinking like this, it kind of blows my mind that there might be a good handful of patients that aren't getting the benefit of good basic care.

No offense taken. #1-don't join a big group of people on one board if your feelings are hurt easily. #2-Don't come to a place where we are all trying to help if you don't like "constructive critism". Anyhow, I still need to check the paperwork because now I'm curious if it was me or the doctor who put that in my head. More importantly, if what you say is true, would this maybe help with that inbetween period when the pred works great, then it all comes back until the full dosage is acheived with the verapimil? If so, I will very happily be wrong on this one.

Alright, to clarify my posts. Sorry to give you a bad name doc, it was me. The doc said not to take the abortive, indomethicin while on prednisone. Although, I was instructed to take pred, then verap. NOT because of any interaction, just what I was told to do. In light of you Brew, I will be asking about taking both at once for my next cycle. I am hoping this one is almost done.

this site is such a blessing, especially for someone like me who often has no ins therefore no real care from specialists. I go to the locak hospital er. Yesterday I was in the er and was introduced to th Dr " this guy is a real expert " which obviously I'm not but shows how little they know. I didn't know to ask for a preventative along with the pred taper, so I'll have to go back, what do you suggest? how much does it cost? BY THE WAY i SUFFERED FOR 10 PLUS YEARS BEFORE PREDNISONE WAS SUGGESTED ON THIS SITE

Saxman, sorry to hear you haven't been taken care of like you deserve. Whether it be an uneducated doctor or money woes, there's always an obstacle. I want you to post this question as a new post so that it will catch some of the "good guys" attention on here. Off the top of my head, I know Bob Johnson would be happy to post some findings for you. Many on here are near expert status in my opinion. Not because of any degree, just experience and knowing where to find and post the information. There is a wealth of it and some on here are the best at finding it. Grab their attention with a new post and rest assured you'll get what your're looking for or at least where to find it. Good luck to you and happy to see this place is giving you new light like prednisone. I know it's my friend. The one thing I can answer for you is the no insurance. My preventative, Verapimil (here in Michigan with no ins.) was $30 and last about a month and a half, my expected time to need to be on it. Hope this helps.

Like many on this board I have done a lot of research about available CH therapies.

Prednisone is a synthetic hormone of adrenal gland. One of its major characteristics is it that it suppresses inflammation and oedema (swellings) in general. The inflammation and swellings are  human body natural non-specific immune response to numerous attacking agents. It is speculated that high doses of prednisone given to the CH patients cause "shrinkage" of the tissues surrounding trigeminal nerve thus relieving the pressure on it.

Verapamil is a calcium channel blocker. The electrical signals propagate along nerves when specific ions permeate the cell membrane of a neuron. The most common ion species that causes electric signalling is single charged sodium ion. It is believed that the cluster headaches are associated with the abnormal electrical firing of neurons by calcium ion membrane penetration - "calcium channel". Verapamil blocks this penetration.

Both prednisone and verapamil have some serious side-effects and should be used with caution under physician's supervision. However, since their mechanisms of action are very different there is little to no interaction.

What makes cluster headaches such nasty animal is that there is no certainty of its cause. Theories range from simple mechanical explanations (blood vessel dilatation pinching the nerve) to the complex biochemistry of nerve conduction. That leaves us sufferers with "whatever works".


On the side note, Brew indeed emptied both barrels on Remission Lover but for the reason. What I really love about this place is that it did not escalate into flamewar. Remission rechecked her facts and gracefully admited she was wrong while Brew apologized for the strong language. The end result: we are all a bit more educated about the rationale for prednisone and verapamil therapies.

:)

STOP!!
Pay attention to what is going on !!!
=========

Mizro's first message was posted on Sep 3.
Mizro's last message posted was on Sep 8 !
------------------------------------------------------

15 messages were posted AFTER Mizro's last message, the last one, #36,  being dated Dec 18.

In other words: Mizro was lost from attention! The person who was seeking help disappeared and no one appears to have noticed.

Just stop and reflect for a moment, please!!!!

remission lover wrote on Dec 18^th, 2009 at 12:55pm:

Saxman, sorry to hear you haven't been taken care of like you deserve. Whether it be an uneducated doctor or money woes, there's always an obstacle. I want you to post this question as a new post so that it will catch some of the "good guys" attention on here. Off the top of my head, I know Bob Johnson would be happy to post some findings for you. Many on here are near expert status in my opinion. Not because of any degree, just experience and knowing where to find and post the information. There is a wealth of it and some on here are the best at finding it. Grab their attention with a new post and rest assured you'll get what your're looking for or at least where to find it. Good luck to you and happy to see this place is giving you new light like prednisone. I know it's my friend. The one thing I can answer for you is the no insurance. My preventative, Verapimil (here in Michigan with no ins.) was $30 and last about a month and a half, my expected time to need to be on it. Hope this helps.

thanks, verymuchI just did a new post... Are you a periodic? when do you your cycles hit, how many per day?

When my doc first started me on prednisone 6 weeks ago, I got kip 6 or 7 the first two days or so...I called her to see if I should discontinue use and she assured me not to. I wish I had only because 3 weeks into my treatment the weather changed drastically where I live and my sinuses flared up, plus I had every side effect of prednisone you can imagine. I will never do it again, hopefully you have more success than I did.

Were you takig the entire 100mg a day dose at once or spreading it out over the day? Whenever I'm on a pred taper my doc starts me at 100mg a day too, but 40 in the am, 30 at lunch and 30 at dinner. If you are taking the entre dose at once, it might be causing the headaches. I found that if I take more than 40mg at a time, I'm hit with a terrible headache. Hope this helps!!