Hello,
This is my first time on a website like this. I was feeling sorry for myself, but after reading what others are going through, it puts it in perspective. I started getting cluster headaches my senior year of college. I get them every couple years, and each time they last longer and longer, (the last time 3 months, with 3 headaches/night). My doctor had put me on Prednisone which stopped the headaches while I was on it, but as soon as it was done the headaches are back. I am now 7 weeks into them, my doctor now has me on Topamax, and Verapamil, which I don't see much affect other than being tired!!. I have 2 kids, a husband, and a job.
So my question was, do they ever just stop happening?? Just looking for some encouragement!!!
Also, how long before the Topamax, and Verapamil kick in? I have been on the about 10 days.  I use Imitrex injections for the headaches.
My thoughts and prayers to all of you, especially those who never get a break!

Yes....no....maybe!  Some people stop having them as they get older...some don't, not much rhyme or reason to it from what I've seen on the board. I'm 48, been battling it about 30 years, I keep hoping!!!!

You haven't mentioned oxygen yet. Please read the link on the left, it should be your first line abortive. I can halt an attack as quickly as 6 minutes by huffing pure 02. The key points are pure 02, at a high flow rate, at least 15 lpm, using a non re breather mask. Definitely worth looking into.

What is the dose on your verapamil? It's not unusual for it to take a week or two to start having a beneficial effect. The effective doses can be a lot higher then many docs are comfortable with.

I had the same experience as you on prednisone. Provides 100% relief from headaches, but as soon as you stop taking it, WAM!!!

Hoping you catch a short cycle this time around! Welcome to the board, glad you found us!

Guiseppi

Have never seen any research on the issue but a couple of guesses by decent researchers that they do seem to taper off with age (around 60 plus).

hi there, welcome to the site. i am new here too, but have been battling the beast for over 20 years. i am 42 now and mine started when i was 18. i read your question earlier today and it almost made me cry. i would love to tell you that they DO go away as you get older, but for most of us, that is not the case. however you may be the lucky one! but if they dont, you have sure  found help right here!!!!!! about 19 years ago when i was diagnosed, i was told that this was mainly a male thing, that it affected males between the ages of 18 and 40. i too keep hoping that mine will go away. and to be honest, they have been less intense the last three cycles. so there is hope! it seems prednisone is an option alot of folks here choose. i used it for years myself with good results. one thing i can guaruntee you is , is that now that you have found this site, yours will be better too. there is a WEALTH of knowledge here, not to mention support, that i assure you will help you in some form or another. i have found that in just two short days, that the people here honestly feel and share your pain, and will literally do almost anything to help you. please try some of the suggestions others have menitoned, ( like high flow oxygen with a non re-breather mask) some are truley life savers, and i hope and pray that you will find something that helps you put the beast at bay. i hope and pray that your cycle is short, and remember, help, support, and an understanding person is just a click away.  God bless     Tuck

I am now 61 and have turned officially chronic by definition recently.  Right now I am experiencing a cycle rather than the regular buzz/activity/shadows that has been going on for more than a year.  The hits do appear less severe then in my earlier years, but maybe I'm a bit better at controlling them.  So the answer to the age issue with me is "no" they haven't gotten better.  Over time the headaches with me morphed from regular well defined cycles to random cycles all over the place---longer each time.

Like Guiseppi had mentioned, O2 high flow rate, non-rebreather mask, should be your first line of defense.  It takes awhile to become used to the proper way of using it to become effective.  Imitrex injections are wonderful, but the more you use, the more you'll need.  The verapamil should start to help after about 14 days, but don't expect miracles with it--perhaps less pain from the headache.  The topomax I couldn't tolerate, but Mary Ann, aka beachmusic, I believe might have benefited from it.  You might want to try some red bull energy drinks occasionally when you hear the beast knocking--these seem to help me function and will abort some minor hits.

I hope you have relief soon.............hang around here and you'll educate yourself for better treatment.

John

It is perfectly acceptable to feel sorry for yourself when you are in cycle.  Ya just have to eventually get over that though.   ::)

But my grandmother had CH and yep - it just went away.  

Thanks for all of your responses. First of all I did call my doctor today and asked (her receptionist at least) about the oxygen as a treatment.  She is supposed to call me back tomorrow. I am not that familiar with it, but I am very concerned about how often I am using the Imitrex injections, (up to 3 times a night) and previously I had been using Maxalt, which seemed to be losing its effectiveness. I was put on oxygen in the emergency room years ago, and it didn't do a thing, but I think I was too far gone at that point.

I am touched by everyones concern. A friend emailed me the link to this website at work on Sunday, and within seconds of opening it up I had tears streaming down my face. As I said in my earlier message I started getting clusters at 21, (I am now 41), and have never known anyone else who suffered from them, or who even vaguely understood them. Up until my last cycle, I was never treated preventedively for them at all, so I am still learning. 99% of my headaches happen in the middle of the night (for which I am thankful), but the rest of the world, except for you guys!!, have no idea what I go through!  As I read what others have written, I can relate on so many levels. It feels so nice to be able to open up to others. I am 7 weeks into my cycle, exhausted at work everyday, but I know no one there wants to hear about it! Thanks for listening, and I will have more techinal/medical type questions tomorrow after I speak to my doctor. Just wanted to say thanks.

My wife's grandfather was diagnosed with Horners syndrome a long time ago.  He is 82 and hasn;t had them in over 20 years

Hello again. I realize I am getting off the subject of whether cluster headaches subside as you get older. I guess you learn to manage them better. And speaking of that, Guiseppi, you had asked how much Verapamil I take. I just started it about 10 days ago, ( I had just done 2 series of Prednisone). I take 180 mg a day. About a week ago I started Topamax, I am taking 25mg a day. My doctor says she will increase the dose next week. I am still getting the headaches. What do you think? She is supposed to call me tomorrow about the O2.
Also, yesterday I had a headache during the day, which almost never happens to me. I was out in public, so quick took a Maxalt tablet. How bad is it to switch back and forth between Maxalt and Imitrex? I appreciate anyones input. Also, should I switch out of the "getting to know ya forum?" Thanks

abnorth wrote on Jun 9^th, 2008 at 6:30pm:

Thanks for all of your responses. First of all I did call my doctor today and asked (her receptionist at least) about the oxygen as a treatment.  She is supposed to call me back tomorrow. I am not that familiar with it, but I am very concerned about how often I am using the Imitrex injections, (up to 3 times a night) and previously I had been using Maxalt, which seemed to be losing its effectiveness. I was put on oxygen in the emergency room years ago, and it didn't do a thing, but I think I was too far gone at that point. I am touched by everyones concern. A friend emailed me the link to this website at work on Sunday, and within seconds of opening it up I had tears streaming down my face. As I said in my earlier message I started getting clusters at 21, (I am now 41), and have never known anyone else who suffered from them, or who even vaguely understood them. Up until my last cycle, I was never treated preventedively for them at all, so I am still learning. 99% of my headaches happen in the middle of the night (for which I am thankful), but the rest of the world, except for you guys!!, have no idea what I go through!  As I read what others have written, I can relate on so many levels. It feels so nice to be able to open up to others. I am 7 weeks into my cycle, exhausted at work everyday, but I know no one there wants to hear about it! Thanks for listening, and I will have more techinal/medical type questions tomorrow after I speak to my doctor. Just wanted to say thanks.

Give Zomig nasal a try.  It's not as fast as imitrex injections, but I found that using it once during the night, I do not have additional headaches and can at least sleep.  The half life of Zomig is longer than the imitrex.  Your doc probably can give you a sample pack---caution:  wait at least 24 hours before using after your last imitrex dose.

John

Thanks, I will give ask my doctor about the Zomig. I really appreciate the help.
Ab

Ab, i take 320mg's of verapail every day. the oxygen is a LIFE saver. remember, you MUST have a non re-breather mask, and you MUST have a high flow regulator. at LEAST up to 10.(I use 12 to 15 flow) i have been fighting the beast for over 20 years, and my nighttime hits were always bad also. i just this week,(thanks to this site) tried melatonin,(10mg's before going to bed) and it was a MIRACLE!!!! its cheap and you can get it at almost any drugstore over the counter. glad you found us, and good luck and GOD bless.     Tuck

Couldn't say whether cluster headaches subside as you get older as a general rule, but...

I'm an episodic.  Always have been, since I was 13.  I'm 54 now.

For twenty years, I cycled twice a year--spring and fall.  For the next ten years, I cycled once a year--almost always in the spring.  My last three cycles were each three years apart.  I'm two years into remission now, so we'll see.

So far, so good.  Maybe the beast will die before I do.  To be honest, I'm damn tired of him.

Best wishes,

George

We see verapamil doses as high as 960 mg a day before some people get relief, it's a trial and error deal of how much your body will stand and finding out at what level it starts helping. I've never used any of the other triptans other then imitrex so I'm not a good one to ask as far as how to use them without causing yourself problems.

Guiseppi

Hi Ab and welcome!

I have been episodic for 27 years.   The Verapamil helped me when I got up to 360mg a day.  It changes so often though. It could be totally different next time.  CH is totally unreliable.  The only thing you can count on being the same for everyone is the pain but everything else varies!  

Don't worry about feeling sorry for yourself!  You are entitled.  CH is terrible!  Hang around though.  You will get more support here than you can imagine!

Many PF wishes!

Jeannie

The older I get, the longer my remissions.

I am 42 and have had the clusters since age 11. There was no help for these things back in the 70's.

In my teens and early twenties I had one cycle per year, every year. Later twenties, remissions went to two years with the same cycles. My last three cycles, however have been 1999, 2004 and 2008. That is a 5 year and 4 year remission. I am THRILLED that these things are getting longer and longer between cycles.

Working on an oxygen prescription as we speak. Regular MD won't prescribe, waiting for referral to the Neurologist. Argh!

It’s thought that CH may go away or diminishes with age, if that’s the case then I’m going to live to 100 as I didn’t get it till I was 49, then had a 5 year break before going chronic in 2004.
Now 59 & getting longer breaks between high cycles & shorter cycles; this may be due to the Taurine/Magnesium regime I am running with or it was going to go that way by itself, only time will tell.

Cheers
Barry

My neuro prescribed Zomig nasal spray for me and I have found it works pretty well if i can use it before the hit gets too bad.  I too have practically all my hits in the early morning hours.  When the hammer hits me in the head and wakes me and when the searing hot starts in my eye, if i can use the Zomig then it really helps.  There have been times when I waited too long and I was in such pain I couldn't even find my nose.  Holding my head over and popping the single dose in the very end of my nose and then holding my nose closed for 20 seconds seems to work for me.