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        Cluster Headache Help and Support >> Cluster Headache Specific >> Does the beast ever leave permanently?
        
(Message started by: jenrob2006 on Jul 5^th, 2006, 8:31am)

Title: Does the beast ever leave permanently?
Post by jenrob2006 on Jul 5^th, 2006, 8:31am

Is there anyone here who no longer has CH after years and years? I dont mean just a couple of years of remission, I mean completely done and free? (as far as you can tell) I need a light at the end of my tunnel. I thought I was done. I had been having cycles twice a year for 10 years. I made a decision to never have another drink again (I was never an avid drinker, just socially) and I committed to staying to this Eat Right for Your Blood Type Diet 4 years ago. I didnt have a cycle for 4 years until now. I thought I was done. I am really depressed with coming to terms with the fact that this is never going to end. I am scared and sad and angry all at the same time. The only saving grace thus far has been finding this website and being able to read how everyone deals with this and is able to still look up. I need to know the secret.

Title: Re: Does the beast ever leave permanently?
Post by seasonalboomer on Jul 5^th, 2006, 8:59am

on 07/05/06 at 08:31:09, jenrob2006 wrote:

Jen,

There are several people that have had extended remissions - which is what those who have suddenly had there CH up and leave for years would probably still regard them as. My father is an example who has gone 6 or 7 years now without CH after having severe and frequent cycles for decades. There are several others that still offer support here on the boards who have also seen there CH to seemingly pass.

It's a mystery.

Contemplating your future with CH from the midst of a cycle is probably bad strategy at this point. This is where the sheer breadth of experience on these boards comes in handy. From those who are chronic to those with extremely long cycles I've learned a measure of acceptance and with that acceptance comes a focus on management and living life between the hits.

Looking out on how you wanted your life to be needn't be trashed due to the feeling of doom that often accompanies CH. It just needs a few tweaks. Life with CH ain't easy when you're getting hit, but it's no less wondrous when you're not being hit.

Scott

Title: Re: Does the beast ever leave permanently?
Post by Bob P on Jul 5^th, 2006, 9:44am

Jen,
I had episodic cycles every 8-9 months from the age of 20 to age 40. On my 40th birthday I quit drinking for good. My remissions immediately jumped to 2 years in lenght. Every remission since has gotten longer. Now 55 y/o and the last one was 3 years 3 months long.

I tell myself each cycle is the last one. One of these times I'll be right!

Title: Re: Does the beast ever leave permanently?
Post by kcopelin on Jul 5^th, 2006, 10:01am

Jen,
Light at the end of the tunnel? There are many on this board who are in long remission...sometimes years...they would have to answer about whether they feel that the CHs are truly gone for good. I know that at the end of every cycle-back when I was episodic-I prayed fervently that it was the last cycle. And some of my remissions were long enough to almost forget the CHs. Unfortunately, for me, they always came back, and now I am chronic (17 months). Certainly we all want a permanent cure for these headches, but until that happens, the secret is how you live each pain-free moment. If you spend that time either worried about the next hit, or stuck in the future, you miss the everyday grace around you and the stupid headaches win. The secret-live between the headaches.
Wishing you PFDAN!
Kathy

Title: Re: Does the beast ever leave permanently?
Post by Guiseppi on Jul 5^th, 2006, 10:30am

I just finished a 2 year remission followed by an 8 month on cycle! I had almost convinced myself they were gone for good this time. I'll just repeat what everyone else said. They will either quit....or they won't. There is no rhyme or reason to them, it doesn't make sense and it certainly isn't fair. But on the bright side you get to hang out with all of us really cool people!

Seriously, you won't find a group more willing, and more importantly, ABLE to help you then on this board. Hang in there we're with you.

Guiseppi

Title: Re: Does the beast ever leave permanently?
Post by georgej on Jul 5^th, 2006, 10:37am

I can only speak from my own experience as a long-time episodic, but my remissions have gotten longer and longer as I've gotten older. I once popped my skull twice-yearly, spring and fall, and now go three years between cycles. At least the last three or four cycles, anyway... So does it ever "end"? I don't know.

But even if I knew that the cycles would continue to come all the way until it is time for me to take the dirt nap, I would accept them as part of the price that I, at least, pay for being alive. And living is worth any price that must be paid--as far as I'm concerned, anyway. In fact, if human beings could live for a thousand years, and if the price we paid for it was to suffer a CH cycle once or twice a year, I'd pay it--living is that precious.

After so many years, CH is only a part of what makes myself, me. I try not to allow it to dominate who I am, but it is a part of the whole. Perhaps that part cannot be changed. Perhaps I'll never be rid of them. So be it.

How we come to accept or to war against the monster is a very private decision that can only be made by one clusterhead at a time. Fight or accept. You really have no other choice.

Cluster headaches are not lethal, but attitudes can be. Please don't think that there is any criticisism in what I said--I'm only trying to speak to you from my own experience across this sadly inadequate medium. I know that it's hard to think clearly when you're in the depths of a cycle, but give yourself time to ruminate over whether you will fight or accept when your cycle is ended.

My best wishes to you.

Regards,

George

Title: Re: Does the beast ever leave permanently?
Post by Bob_Johnson on Jul 5^th, 2006, 11:37am

When we read someone writing about their dread of CH or the anxiety of waiting for the next attack, we are seeing the emotional effects of CH. These reactions are not fixed even by good medical treatment of the Clusters.

This is the first few paragraphs from a longer article: You can find the entire piece on the OUCH site or I'll e-mail it to you if you will leave your address (using the instant message button.) (The whole thing is too large to be posted here.) The approach outlined to reduce suffering is developed from cognitive therapy, a well researched therapy used by mental health types. But don't ask for it unless you accept that it takes practice and commitment to make it work! There is no Imitrex injection for this problem.

------------------------------------------------------------------------ ----------------------------------------
AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.

Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.

Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.

The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN! This is the paradox which we need to resolve if CH is not to be the controlling experience in life.
------------------------------------------------------------------------

Title: Re: Does the beast ever leave permanently?
Post by chewy on Jul 5^th, 2006, 11:54am

I have been in remission for 4 years.

My med cabinet is fully stocked with imitrex.

Haven't disposed of any yet and dont plan to.

Title: Re: Does the beast ever leave permanently?
Post by Linda_Howell on Jul 5^th, 2006, 12:44pm

Our mean old Charlie is at 15 years and counting.

Don't give up hope.

Title: Re: Does the beast ever leave permanently?
Post by Katherinecm on Jul 5^th, 2006, 12:58pm

A friend of mine heard some quote from some Greek philosopher recently (Epicurious maybe) and asked if it was true- something to the effect of "The fear of pain is worse than pain itself." I thought about it for a few minutes and decided it was correct.

You don't get depressed or feel hopeless because you are in pain- you do so because you're afraid the pain will never end. Ever since I heard that I haven't been as afraid of the pain, and it's been much easier to handle.

Has anyone ever compared the lifestyles of those that are having long remissions? What are the similarities?

Title: Re: Does the beast ever leave permanently?
Post by marlinsfan on Jul 8^th, 2006, 8:37pm

on 07/05/06 at 12:58:05, Katherinecm wrote:

A friend of mine heard some quote from some Greek philosopher recently (Epicurious maybe) and asked if it was true- something to the effect of "The fear of pain is worse than pain itself."

There's an old Rush song (The Weapon) that starts:

You've got nothing to fear but fear itself
Not pain, not failure, not fatal tragedy,
Not the broken units in this mad machinery
Not the broken contacts in emotial chemistry

As for me, the most I've gone is3 years between cycles, and as little as a few months. I plan on living with the beast the rest of my life. Once you accept that, you'll be fine.

Title: Re: Does the beast ever leave permanently?
Post by Weatherman on Jul 9^th, 2006, 2:07am

Man, I love it when I see a fellow RUSH fan quote Neil's lyrics. That was a good one!
"He's a little bit afraid of dying, but he's a lot more afraid of your lying"
What a great song!

Doug

Title: Re: Does the beast ever leave permanently?
Post by BobG on Jul 9^th, 2006, 12:55pm

My clusters started 30 years ago. My last cluster was about 7 years ago. Every year since then I've had cycles of shadows, usually January to March. The daily shadows were in the KIP 2 to 4 range. They were more irritating than anything and not high enough on the KIP for me to say they were a 'true' cluster.
I'm 59 now. Have I outgrown them? I don't know.
There's been many discussions here about rebounds and drugs making a cycle longer, etc.
The only drug I have ever taken is Sansert and the last time I took that was about 10 years ago. I just toughed them out with ice packs. Why? I didn't know any better. I believed what my doctor and neurologisy said. And, the biggie, this site had not started yet. Since I have not been using all the drugs that many here have, cluster after cluster, year after year, is that the reason my clusters have mostly disappeared? I don't know.

Title: Re: Does the beast ever leave permanently?
Post by Dixiedelight on Jul 9^th, 2006, 4:58pm

Yep I know several people who no longer have clusters.

Title: Re: Does the beast ever leave permanently?
Post by JeffB on Jul 12^th, 2006, 3:19pm

I went 5 years till about 2 years ago, got hit with 3 cycles in that year. been pf over a year now.