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        Cluster Headache Help and Support >> Cluster Headache Specific >> Headache attacks while taking Predinsone
        
(Message started by: ellenjoanne2003 on Mar 2^nd, 2007, 11:33am)

Title: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 2^nd, 2007, 11:33am

Hi Everybody,

It's been a while since I last posted (almost 2 years). No, I haven't been headache free all of that time. I missed my my main cluster cycle (the late Fall, and early Winter) in both 2005, and 2006. BUT, I learned the hard way that prolonged, major (and in some cases, violent) swings in the weather, will bring on cluster episodes for me. This happened for the first time in April of 2006, when 2 weeks worth of major temperature swings (a couple of days of temps in the 60s & 70s, and then temps diving back down into the 30s for a day or two, and then the temperature cycle repeating), were enough to bring on an episode.

Winter finally arriving here in Wisconsin in the 2nd week of this January had a similar effect on me (one day the temps were in the low 40s, the next day they were in the low 20s, and we had below zero temps by the first week of Feb.). By the middle of the 3rd week of January, I was in a full blown episode. The Migranol I use as an abortive (I don't like stabbing needles into myself, so I don't use Imitrex [BTW, Migranol is just as expensive as Imitrex]), that had worked so well for me during my episode last April (typically within 5-10 minutes of use, most of the headache attack was gone), was only proving marginally effective (it often took up to 40 minutes or so before I felt any relief). My doctor (she's a neurologist, who's also board certfied as a headache specialist) decided that my Cluster attacks were getting out of control, so she put me on Prednisone (I hate that stuff, it revs me up when I first start taking it, and then I get the blues, when I'm on the downward end of the 1 week cycle).

Typically, Prednisone has stopped my episodes. But during this last episode, I had something weird & unsettling occur to me while I was on Prednisone. When you're on Prednisone, you're NOT supposed to have headache attacks. Guess what?, I had TWO attacks. One of them (which occurred on a late Saturday night, while I was still awake), was so bad, that it was just like the old days (when I suspected I suffered from Cluster Headaches, but still wasn't diagnosed for them). I took Migranol (it's a nasal spray), and it worked about as well as Ibuprofen works on Cluster Headaches. As a result, I suffered a 1 1/2 hour attack, that left me crying.

Has anybody else ever suffered attacks, while they were on Prednisone?

Hugs,
Ellen

P.S. - BTW, I suffered a few more attacks after I went off of Prednisone (I've had this happen before, during other cycles). But, the attacks seem to have settled down (I haven't had one one in over 2 weeks). I have had another strange thing happen. The attacks in this cycle have all (with the exception of the one mentioned above) occurred about 1 1/2 to 2 hours after I went to bed. Lately, I've had a few nights, where I've woke up to use the bathroom, and I've had a headache on the side of my head (the right side), where I have my cluster headaches. I have no problem going back to sleep. As you all know, when you're having a cluster headache attack, you CAN'T sleep until the attack stops. Is this something different, or a precursor to a new Cluster cycle (or continuation of the old one)?

Title: Re: Headache attacks while taking Predinsone
Post by Judge_Smails on Mar 2^nd, 2007, 3:53pm

Last cycle was the first time I tried Pred and I still suffered 1 CH every day or two (compared to 3/4 per day if I don't take any meds).

From what I understand Pred is a temporary solution to jolt your system (which in many cases stops a cycle or makes it less severe) while you ramp up on a more stable/long term prevent. Given that situation I don't think it's unussual for you to still experience CHs while taking Pred.

just my $.02

Title: Re: Headache attacks while taking Predinsone
Post by chewy on Mar 2^nd, 2007, 5:00pm

Quote:

Has anybody else ever suffered attacks, while they were on Prednisone?

Depends on the dosage, waht point in the taper, and wether or not a preventative is being used in conjunction.

Title: Re: Headache attacks while taking Predinsone
Post by UN solved on Mar 2^nd, 2007, 5:38pm

There is no 1 thing that will definately stop all CH attacks. Although Prednisone does a pretty good job at it if given the right dose. No matter what steroid you take, there's still always a chance that a CH may oocur. The beast knows no rules !! The beast may also morph at anytime into longer cycles, more intense visits, and/or more frequent visits.

Goodluck

UNsolved

Title: Re: Headache attacks while taking Predinsone
Post by Spoticus on Mar 2^nd, 2007, 5:56pm

my doc prescribed it at the beginning of my last cycle and it didn't go very well. I think it worked for a day or two (though who knows maybe the beast just spared me for a short while) but I ended up with severe wakefulness, acne like mad, leg cramps and some back pain I think. That and after the first two days the CH was back at full force for the two weeks I was on it. I did end up having a short cycle though so maybe it was involved in that, who knows. On the plus side I have a skin problem which results in very dry/sore skin around my face/neck and my skin remained oily for months after I was on the pred, it is basically back to normal again now though 4-5 months later. (at least I am attributing it to the oily skin as I have no idea what else would of done it).

So in short it is more than possible to get CH's while your on it.

Title: Re: Headache attacks while taking Predinsone
Post by daniel96 on Mar 2^nd, 2007, 7:44pm

I myself just been issue with " Prednisolone" also a steroid. Suppose to break the cycle and cut down the pain caused during the cycle. I not sure whether is it working cause just started this medication.

Title: Re: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 2^nd, 2007, 8:29pm

Thanks for all of the replies. :) When I've taken Prenisone, it's always been for a one week cycle. It has always stopped my attacks (at least during the prednisone regimen). I've had some onsey twosies (in other words an attack or two, or three, spaced apart by several days), after I've finished the Prednisone regimen. But, that's it. This cycle was different than mosy of my other cycles - only one attack per day (typically about 30 to 50% of the days I have attacks, I will have 2 attacks for the day [aren't CHAs that occur when you're at work, fun? NOT!]).

My Prednisone regimen this time was for 7 days, and started at 70mg, decreasing by 10 mg/day. My nasty CHA occurred on Day 3 of the regimen (I had taken 50 mg of Prednisone). My 2nd attack (which was also no fun, but nowhere near as bad as the first one), occurred on Day 6 of the regimen (I took 20 mg of Prednisone that day).

With regards to the comment that Judge_Smails made - " From what I understand Pred is a temporary solution to jolt your system (which in many cases stops a cycle or makes it less severe) while you ramp up on a more stable/long term prevent."

That's not quite true. Prednisone is a very powerful anti-inflammatory steriod (my first headache specialist told me that it's the most powerful synthetic steroid made), that is used for a number of things (it is a last resort medication for me for my asthma, my mom has to take it if she is stung by a bee or a wasp [she's allergic to the stings], and my dad took it during chemotherapy for his cancer in 1990). The key is - anti inflammatory. In the case of cluster headaches - yes, when you first start treatment, it helps to settle down trigemnal nerve inflammation, while you're settling into your long term preventative meds. Once you're on your long term meds (in my case - Verapamil [I've been taking it since July 2005]), Prednisone is used to get rid of the trigemnal nerve inflammation. After that time, if it's necessary, meds can be changed, or dosages increased for the long term meds.

Hugs & may you sleep well tonight,
Ellen

P.S. - the weather is fluctuating again (we're having warm & cold spells). I hope it doesn't revive this latest CHA cycle.

Title: Re: Headache attacks while taking Predinsone
Post by daniel96 on Mar 3^rd, 2007, 12:36am

interesting

Title: Re: Headache attacks while taking Predinsone
Post by Spoticus on Mar 3^rd, 2007, 6:04am

Daniel I probably should of specified that mine was also Prednisolone. I am not sure if there is a huge difference between it and Prednisone as from a quick search online it said Prednisone is turned into Prednisolone by the liver.

Maybe Annette or someone else can elaborate on the major differences if any.

Title: Re: Headache attacks while taking Predinsone
Post by daniel96 on Mar 3^rd, 2007, 7:59am

Just some information I found.

Prednisone is a corticosteroid, a potent chemical that occurs naturally in the body. It is taken initially in high doses and then tapered over days or weeks, depending on the response. This medication is best if used for short periods of time.

Long-term corticosteroid use can cause many serious adverse side effects because it is involved in several different functions in the body. Potential side effects include an increase in intraocular pressure, osteoporosis, behavioral changes, ulcer, and diabetes.

Title: Re: Headache attacks while taking Predinsone
Post by E-Double on Mar 3^rd, 2007, 8:50am

you are correct Daniel

Title: Re: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 3^rd, 2007, 9:27am

Daniel,

What you said is quite true. Both my mom (a retired medical lab technician), and my first headache specialist (whom I no longer see, because he moved), told me the info below:

If you take Prednisone for longer than 2 weeks, your adrenal glands begin to quit making your body's own natural version of Prednisone (because you're being dosed with so much more Prednisone, than the version your body makes). As a result, extra care needs to be taken in weaning you from Prednisone, if you take it (every day) for longer than 2 weeks, so your adrenal glands can be coaxed into restarting production of your body's natural version of Prednisone. Going cold turkey after long term usage can have dire medical consequeces.

As I mentioned earlier. I am an astmatic (I was diagnosed with it, after a major attack, that almost put me in the hospital in 2003). There are many drugs available nowadays for treating asthma, but as recently as 10 or 20 years ago, this was not the case, and one of the main meds that was used back then to treat asthma in the longer term (at least until it really settled down), was Prednisone. A former coworker of mine's husband is a bad asthmatic (he's had it at least as long as they've been married [over 20 years]). Back before drugs like Advair became available to help deal with asthma, her husband had to take Prednisone for long periods of time. He went cold turkey from Prednisone once way back when, and the resulting physical reaction by his body, almost killed him. You don't mess with Prednisone.

Hugs,
Ellen

P.S. - E-Double, like the avatar photo - the Clash's London Calling album cover, showing Paul Simonon smashing his Fender Precision bass in frustration, during a New York show in 1979. I'm a guitar slinger myself (used to play lead guitar semi-pro in heavy rock bands).

Title: Re: Headache attacks while taking Predinsone
Post by daniel96 on Mar 3^rd, 2007, 9:33am

Hi Ellen, seriously I am no doctor but I too don't like to take too much medicine, cause surely there's side effects sometimes even the specialist don't highlight to us the side effects.

But have you try Oxygen therapy for yourself when you having the cluster headache?

Title: Re: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 3^rd, 2007, 10:42am

Hi Daniel,

My Doctor prefers to keep oxygen therapy as a last resort, so I don't have to carry a small tank with me to work, or keep a tank at home. Oxygen therapy is a good therapy. But realize that is is an abortive. It is not a preventative. The whole key to cluster headache treatment, is to not only stop the headaches, but keep them from happening (or at least minimize their ocurrance). As my doctor told me, I'm stuck with Cluster Headaches for the rest of my life. But, if they can be minimized, I can prevent the trigemnal nerve from becoming constantly inflamed, to the point, where my episodic cluster headaches, quit being episodic, and become chronic. Ask any of the members who have chronic cluster headaches, and they'll tell you that they're beyond awful having. But, the key is to minimize the nerve inflammation, which is done by aborting the headaches when they occur, and trying to prevent (or at least minimize the amount of) them from happening.

Meds seem to be the only way to prevent/minimize headache occurence. Biofeedback, and diet have no effect on the frequency of cluster headache attacks. But, if you are stressed and not getting enough sleep, it can be a factor in instigating headache attacks (something which my mom the retired lab tech, harps about to me all of the time).

Hugs & Stay Well :),
Ellen

on 03/03/07 at 09:33:20, daniel96 wrote:

Title: Re: Headache attacks while taking Predinsone
Post by E-Double on Mar 3^rd, 2007, 10:57am

I'm Chronic and I will tell you that life got so much better for me once I came OFF all meds. Less hits. Decreased intensity and duration.

Once in a blue moon I will use a jab of trex or pop a zyprexa if lecturing and get hit but otherwise I will use oxygen. No preventatives whatsoever.

I have smally tanks that can fit in a back pack.

Life savers!!!!!!!!!

I was episodic for over a decade and survived without meds and without diagnosis.
Things hit the fan, received a diagnosis and the meds that follow. Cycle kept going and going (oh yeah and I still got hit when on roids) I finally decided at the 2yr mark to detox. I still get hit but much easier and I am now med free for 1 yr. Chronic 3 yrs.

Good luck.

E

Title: Re: Headache attacks while taking Predinsone
Post by daniel96 on Mar 3^rd, 2007, 11:28am

Okay Ellen I got what you meant. I know those who are at chronic are really in a bad stage compared to episodic. Nevertheless I hope you can find the right dose of medication and keep us updated yah. As for me I be seeing my specialist in the coming April.

btw, my mum also believes that late night sleep and not drinking enough h2O leads to the nerves "too hot" which means inflammation. Chinese people believes that.

Title: Re: Headache attacks while taking Predinsone
Post by BB on Mar 3^rd, 2007, 3:48pm

Prednisone and prednisolone are pretty much the same thing, same chemical slightly different structures. Its a synthetic steroid and its a very powerful anti-inflammatory with lots of side effects. Its not designed to be taken long term. The adrenal glands sitting on top of your kidneys produce natural steroid to be used by the body when needed. Taking oral steroid suppresses natural body production, so if taken for a long time or when stopping suddenly, the adrenal glands are not able to restart and keep up with the bodys demand and the body can go into "shock".

I have heard of people still getting hit while on steroid. Daniel got hit when he was on 50 mg, his specialist had to increase it to 75 mg for it to work.

Always taper off steroid when you go off them, never stop taking it abruptly.

Painfree wishes to all.

Annette

Title: Re: Headache attacks while taking Predinsone
Post by chopmyheadoff on Mar 5^th, 2007, 7:04am

on 03/03/07 at 10:42:02, ellenjoanne2003 wrote:

hi, just a quick point - it isnt actually the nerve its self that becomes inflamed.
It is the blood vessel running along side it that becomes inflamed and presses against the nerve ;)

Title: Re: Headache attacks while taking Predinsone
Post by LeLimey on Mar 5^th, 2007, 10:40am

Your doctor will give you high dose pred which has the potential to cause serious damage if used long term but keep O2 therapy as a last resort?

I have steroid induced cataracts, I was on it for over nine months and my body couldn't cope without it (not for CH) Another sufferer here has AVN which is horrible due to pred. Its a wonderful med but should not be used without you looking into all the pros AND cons.

I would very much like to hear your doctors explanation of why he considers Pred a more viable option than O2.

Title: Re: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 6^th, 2007, 6:57am

Hi again Everybody,

My doctor just doesn't think that things have gotten severe enough to warrant carrying carrying around an O2 tank. Soooo, no oxygen. I have never taken Prendisone beyond one week (believe me, I've seen what the stuff does to people who have to take it long term [one of my coworkers has Crohn's Disease, and when her colon gets seriously inflamed, she has to take Prednisone for several weeks at a time]). Prednisone has typically stopped my episodes, and my doctor has only prescribed it, when I've ended up having to use an abortive mulitple times (as in like 10 times or more) during a one or 2 week period. I was just very surprised, when I actually had two attacks while taking the stuff. I've been headache free for almost 3 weeks, so it looks like my cycle has stopped.

As for the mechanism that causes cluster headaches - nobody's completely sure what causes them. Yes, there is a vascular component involved with cluster headaches, but it is not in the same manner as magraines. We don't get halos. Diet has no effect. We don't have to worry about losing our eyesight (during the headache) in the eye that's on the side of the headache, or (thankfully) having a stroke during the headache. Experts do believe that there is a neural component involved in the headache, and that they hypothalamus may also be involved. Here's some more info:

http://www.mayoclinic.com/health/cluster-headache/DS00487/DSECTION=3

Well, I'd bette get going. I have to head out to work. Thanks to everybody for your input. :)

Hugs,
Ellen

Title: Re: Headache attacks while taking Predinsone
Post by seasonalboomer on Mar 6^th, 2007, 7:58am

E.J. - I'm short on time this morning. In a nutshell, your doctor is an idiot. Oxygen is not for carrying around although some people do. Also, a preventative course as the only course of treatment is, in my opinion, akin to going into a Texas Hold'm game and the only words you're allowed to use are "All-in".

I've said it before but heres the rundown. CH is a math game.

Take 10 CH hits get through (I'll use a fictional example)
Let's say 7 of 10 hits happen either at night or other times whe you are home.
An O2 E-Tank can be stored in a closet with a little cart and possibly eliminate 80% of those hits in less than 10 minutes.
So thats 6 of 10 dispensed with.
So you don't like needles. I think I get it.
:-/ but I hate cluster pain more than needles. It takes care of the rest of the hits in less than 10 minutes.
What have you just done? You've managed your way through a CH cycle with a combination of preventative and abortive treatments.
Don't let your doctor's short-sightedness or laziness keep you from effectively managing your CH.

Scott

Title: Re: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 6^th, 2007, 9:27am

A few points:

1. Because I hate needles, is why I use Migranol (it's a nasal spray). So, I am using an abortive.

2. I only get ONE episode a year. Even using abortives & preventatives, the length is maybe 2 to 2 1/2 weeks. Oh, and I don't have CH attacks every day during an episode. The frequency of episodes has actually surpised my doctor, because she expected me to possibly have at least one episode in the summer or fall. I don't want to have a tank of pure oxygen hanging around my apartment, unused for umpteen months a year.

3. My doctor is a neurologist, and there is always open discussion about my treatment options.

4. Could we give this a rest?

Ellen

on 03/06/07 at 07:58:18, seasonalboomer wrote:

Title: Re: Headache attacks while taking Predinsone
Post by LeLimey on Mar 6^th, 2007, 3:07pm

An episode of max 2and a half weeks a year and not necessarily getting an attack every day?

And you are talking preventatives? They wouldn't get into your system that fast.

You take pred for a week? What about tapering off it?

I'm sorry but I have to say there isn't an ounce of common sense or any practise I have EVER heard of in treating CH in any of your posts and frankly, it isn't anything I would recommend to anyone else

Title: Re: Headache attacks while taking Predinsone
Post by ellenjoanne2003 on Mar 6^th, 2007, 3:56pm

OK,

I guess I have to clarify things. I have been on preventatives for almost 2 years (360 mg/day of Verapamil). When I take Prednisone (which has happened when I've had maybe maybe 4 or 5 days worth of CH attacks in a week's time), it is for a week. For the CH cycles I've had in 2005, and 2006, the dosage was was 30mg/day, for 2 days, 20 mg/day for 3 days, and 10 mg/day for the last 2 days.

For this last cycle (I haven't had any CH attacks in almost 3 weeks, so I assume it's over), I also took Prednisone for a week. The dosage was 70mg for the first day, 60 mg for the 2nd day, 50mg for the 3rd day, 40 mg for the 4th day, 30 mg for the 5th day, 20 mg for the 6th day, and 10 mg for the 7th and final day.

Sorry if I was unclear to everybody with my specifics. BTW, I stayed on Verapamil the entire time of my cycle, and I am still taking Verapmil. Also, I call my doctor, if I think I'm going into a cycle. That is when the Prenisone is prescribed.

Ellen

on 03/06/07 at 15:07:58, LeLimey wrote:

Title: Re: Headache attacks while taking Predinsone
Post by chewy on Mar 6^th, 2007, 6:11pm

Quote:

From what I understand Pred is a temporary solution to jolt your system (which in many cases stops a cycle or makes it less severe) while you ramp up on a more stable/long term prevent

Quote:

That's not quite true.

With CH that is VERY true.

Title: Re: Headache attacks while taking Predinsone
Post by Redd on Mar 6^th, 2007, 6:29pm

Ellen,

Just because your Doc is a neurologist doesn't mean he's a CH expert. In fact most Neuros are truely oblivious and/or have God complexes when it comes to such rare disorders. There is collectively 1000's of years of experience here on this site to be had.

http://www.brightok.net/~mnjday/chtherapy.pdf

I suggest this bit of reading, not only for you, but for any Doctor you have treating you for this condition. It explains Preventive, Abortive and Transitional treatments (prednisone is a transitional medication). Recommended and therapeudic dosages of medications varies between individuals, but there are some good guidlines as to starting points.

We are trying to help here...don't throw the baby out with the bathwater OK?

Title: Re: Headache attacks while taking Predinsone
Post by Kevin_M on Mar 6^th, 2007, 6:46pm

on 03/06/07 at 09:27:05, ellenjoanne2003 wrote:

I only get ONE episode a year. Even using abortives & preventatives, the length is maybe 2 to 2 1/2 weeks.

on 03/06/07 at 15:56:08, ellenjoanne2003 wrote:

I have been on preventatives for almost 2 years (360 mg/day of Verapamil).

Do you mean you have been maintaining the verapamil at 360mg a day for two years when the entire cycle time is maybe three weeks a year? Is there a reason for still taking it when it wouldn't seem necessary?

Title: Re: Headache attacks while taking Predinsone
Post by Judge_Smails on Mar 7^th, 2007, 3:59pm

I just want to add one thing on the O2 discussion - I know the idea of having these large (or small) O2 tanks around the house isn't the best idea for some people. There is another option - my last cycle was the first time I used O2 (it worked great!) - but the company gave me an O2 compressor that I kept at home and plugged in when I needed O2.

For most of us since O2 isn't a matter of life and death you can get by with the compressor - the only reason they gave me a tank was as a back up in case the electricity went out.

I used a national company called Apria and they will deliver same day if necessary.

If you suffer from CH I would urge you to look into O2 even if it's just for home use.

Good luck