Hello Friends,
This is my first post in 4.5 years.
==========================
The date on my most recent prescription of Imitrex is the latter part of 2005. I've kept all my old medication though it's all expired, just in case. My "remission" ended three days ago, out of the blue (or should I say "black"). I had gone on with my existence, almost forgotten about what cluster headaches were like. But I kept my little black bag of meds, anyway. I had four Imitrex left and I always made sure that when I travelled I took it with me; I never needed it for over 4 years, but I kept it close anyway. Three days ago I got my first CH in over 4 years. I was in tears five minutes after it started blubbering on again just like the last attack almost 4.5 years ago. It all came flooding back, the  pain, the intense pain and the incredible nervous horror of waiting for the next attack. I sat at the kitchen table with the tears pouring out of me remembering everything and experiencing once again the most abysmal savage pain I'd ever experienced. And I knew it was all starting again, when I thought it was long passed and just a bad memory. I remembered all the details of my last bout with CH, and I found my CH diary stuffed in a bookcase with the last entry from September 2005. That day I had a ten-level CH then the pages are all blank because the headaches stopped as mysteriously as they had come on several months before. I remember being so happy when the headaches ended, thinking I could have a normal life again - I had thought that the clusterheadaches would debilitate me and my life ruined. I remember pacing, and drinking strong coffee, and smoking strong cigarettes to make the pain retreat just a little. It seemed to work just a little, but that little made a big impact. Today, I go to the docs to have my 5 year old prescription of Imitrex refilled. I once had an account on this forum, but let it go dormant and now I've forgotten my login name. Why would I remember it, I had no reason to post anything for almost 5 years - I wanted to forget clusterheadaches, forget the horror of it, the frustration, pain, and fear of it. Every aspect of clusterheadaches is negative, it was like some dark patch of my life that I thought was over and done.
I keep feeling shadows constantly and every twinge in my gums or eye I get nervous. I think, "S***, I've got only once imitrex left!" The thing about clusterheadaches is that it makes one feel helpless, and without control over one's own life. There seems no rhyme nor reason to it, but that it's some kind of tribulation some kind of training in suffering that I have to endure again. I remember the agony of these horrible attacks, every day, and to be totally honest, I am terrified.

RemissionOver wrote on Feb 17^th, 2010 at 11:45am:

Hello Friends, This is my first post in 4.5 years. ========================== The date on my most recent prescription of Imitrex is the latter part of 2005. I've kept all my old medication though it's all expired, just in case. My "remission" ended three days ago, out of the blue (or should I say "black"). I had gone on with my existence, almost forgotten about what cluster headaches were like. But I kept my little black bag of meds, anyway. I had four Imitrex left and I always made sure that when I travelled I took it with me; I never needed it for over 4 years, but I kept it close anyway. Three days ago I got my first CH in over 4 years. I was in tears five minutes after it started blubbering on again just like the last attack almost 4.5 years ago. It all came flooding back, the  pain, the intense pain and the incredible nervous horror of waiting for the next attack. I sat at the kitchen table with the tears pouring out of me remembering everything and experiencing once again the most abysmal savage pain I'd ever experienced. And I knew it was all starting again, when I thought it was long passed and just a bad memory. I remembered all the details of my last bout with CH, and I found my CH diary stuffed in a bookcase with the last entry from September 2005. That day I had a ten-level CH then the pages are all blank because the headaches stopped as mysteriously as they had come on several months before. I remember being so happy when the headaches ended, thinking I could have a normal life again - I had thought that the clusterheadaches would debilitate me and my life ruined. I remember pacing, and drinking strong coffee, and smoking strong cigarettes to make the pain retreat just a little. It seemed to work just a little, but that little made a big impact. Today, I go to the docs to have my 5 year old prescription of Imitrex refilled. I once had an account on this forum, but let it go dormant and now I've forgotten my login name. Why would I remember it, I had no reason to post anything for almost 5 years - I wanted to forget clusterheadaches, forget the horror of it, the frustration, pain, and fear of it. Every aspect of clusterheadaches is negative, it was like some dark patch of my life that I thought was over and done. I keep feeling shadows constantly and every twinge in my gums or eye I get nervous. I think, "S***, I've got only once imitrex left!" The thing about clusterheadaches is that it makes one feel helpless, and without control over one's own life. There seems no rhyme nor reason to it, but that it's some kind of tribulation some kind of training in suffering that I have to endure again. I remember the agony of these horrible attacks, every day, and to be totally honest, I am terrified.

If you had stuck around maybe you wouldn't feel this way. 

                    Potter

Quote:

Why would I remember it, I had no reason to post anything for almost 5 years

Besides coming around here to help others who are newly diagnosed and need help like you recieved...another reason to come around once and a while would be that in almost 5 years there are a lot of NEW treatments that are very promising and helping a LOT of people.  A reprieve of 41/2 yrs. is fantastic...but we all know that they will return and having the knowledge to fight them when they come back...is priceless.    High-flow regulators, RC seeds, not to mention cluster-busters are among the things you missed being talked about all this time.

I hope you have a short cycle and get another wonderful reprieve...but in the meantime you've got a lot of reading to do around here to catch up. 

Linda

I feel quite properly rebuked. Thanks.

Linda expressed well a vast reason for this site and otherwise the benefits of checking in with the reoccurring nature of ch. 




Quote:

... happy when the headaches ended, thinking I could have a normal life again - I had thought that the clusterheadaches would debilitate me and my life ruined. Every aspect of clusterheadaches is negative ...

Yet here's a thread that finds a way to say different.


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I think my point is being missed. I thought after 4.5 years that I was done with CH and that they would not return. So, if they would not return, why would I "check in"? I feel like I'm being slammed for "not checking in" and this is a bit ridiculous.

Quote:

I thought after 4.5 years that I was done with CH and that they would not return.

Linda_Howell wrote on Feb 17^th, 2010 at 12:46pm:

A reprieve of 41/2 yrs. is fantastic...but we all know that they will return and having the knowledge to fight them when they come back...is priceless.

We're always open. 

I'm not going to judge you for wanting to forget about your clusters when they were over. I can only speak for myself.

I received so much from this site when I first came here and then I got to meet many when I went to my first CH convention. After that these people were family to me. I became part of this community.

My being here at this point is not about me, it is about helping new people that find us and trying to help them and also to interact with family and help in other areas as well.

Again...everyone is different and many DO leave after their cycle is over. I chose not to. I have been pain free now for 10 years. :)

RemissionOver wrote on Feb 17^th, 2010 at 1:52pm:

I think my point is being missed. I thought after 4.5 years that I was done with CH and that they would not return. So, if they would not return, why would I "check in"? I feel like I'm being slammed for "not checking in" and this is a bit ridiculous.

    I'm 2,000+ days painfree.  I keep a full M tank just for the day they return.  You might have learned something new if you checked in.

             Potter 

>I'm going to judge you

I think this is really incredible. How different this site is from what I recall almost 5 years ago. I post up here saying my cycles have returned after almost 4.5 years and I am slammed for being somehow thoughtless and selfish for having "abandoned" my fellow sufferers by not following this site? This is really ridiculous.

Congrats on your long remission and sorry to see that you are going through this again.  Please read the link to the left on oxygen info.  It talks about the need for a certain kind of face mask and high flow rate of oxygen at over 15 lpm.  It works for almost everyone.  There is verapamil, lithium, topamax, elavil, etc to help prevent the ch.  Imitrex injection and nasal spray work wonders in under 10 min. to abort the ch.  Please check the clusterbusters website they may offer you a solution that may be something you want to look into.  Welcome back!!! 

Maybe you thought you were.....(cue campy organ music)....cured!

You're going to find out that's a naughty word around here. Word to the wise: don't use it.

I think Churchill mentioned something about pessimism seeing difficulty in every opportunity and optimism as seeing opportunity in every difficulty.

This place can be that opportunity.    :)

I should have proofread my post after I typed it. The second word was supposed to be not. I have added it now.

It should have read Not judged you..sorry.

I read right through it without even noticing, probably knew what you meant automatically, Jimi.    ;)

My goodness.  No one here is slamming you or calling you thoughtless or selfish at all.   Simply that these headaches DO recur over and over again.  Lots of episodics go 2, 3 and even 4 years and then BAM!!    I, personally was only saying that since we all know this to be a fact, and you DID say that you saved your meds....that checking in here once and a while you would have seen a few advances we've found in our treatment. 

Hello R.O.

Sorry to have you back.  I had my first cycle in six years last March so I think I know exactly how you feel.  I also had some old Trex lying around and it still worked like a charm.

I had a lot of help from the CH gang.  The knowledge here is simply awesome.  I did the Imitrex tip for the first time (worked like a charm) and also learned a ton of stuff on O2 which I STILL have to try.  But fortunately my cycle ended real fast.  And nothing since then.

So hang in there.  IT WILL PASS.  And I really wish your next remission to be even longer (say 70-80 years long, how's that?).

Take care!

miCHel

Welcome home, my friend!  i know Jimi didn't mean to judge you, as he said in the later post.  No one here is judging you for trying to forget this horror when it is gone.  Several of us have tried it and have learned the beast always comes back, so we have tended to stay around, or at least check in once in a while to be prepared for when the beast does return.  That is what was meant in the previous posts.  Unfortunately, the little squiggles you see on a phosphor screen don't convey the body language nor the vocal inflections we would like to convey like we do through normal speech.  That is one reason Convention and or meet and greets are so valuable.  Once you have met another it is easier to interpret what we write.

Jerry

In re to the original post WOW 4 years that had to be heaven. I think I'd be trying to forget all about them too at that point. But I'd imagine now it's only made you feel worse holding on to that false hope. I'm sorry they are back. Littlebit

I'm new to the site and someone mentioned- RC seeds, not to mention cluster-busters are among the things you missed being talked about all this time.

Can anyone enlighten me on what those are?
Thanks Littlebit

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Charlie

Littlebit, RC seeds are just one of a few natural ways to get rid of cluster headaches.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is a website devoted to these natural methods.  I would recomend you go read there for further information they are having lots of success with there methods.   

Thank you Karla.  You got to her question and answered here just before I had a chance.    :-*

Cluster busters success rate is phenominal.  Go there and read up about it, Littlebit and remissionover. 

One more thing I'd like to say:
  Dr. Peter Goadsby who has spken at one of our conventions and is scheduled to speak at the next one in Atlanta is....and I have a hard time describing what this dear man is to us..He is on our side, he is our hope in the medical community.  He has written papers on our condition, and has advocated for us.

At the last convention where he spoke, Jimi asked him as were leaving the room..."I've been pain-free for 10 years now.  Am I home-free?"  Goadsby looked at him and said NO.   Besides Jimi, Charlie and DJ...I can think of no one who has gone longer than about 3-4 yrs.   I wish that wasn't so.   :'(

Welcome back, and I am so sorry that your CHs have decided to strike back after such a long break. Mentally, that would be tough to deal with, but just know that you'll get through it and there is a ton of support for you here. 

Wishing you pain free days and nights.

Sorry you're back and i do understand that maybe you would like to forget as we all would.
This site has a lot of folks still going through the unmentionable and some lucky, not.
As you can probably remember tetchy and understanding goes hand in hand with those who really care and that's why they stay.

(unless they ain't got much of anything else to do)

Thank you very much Linda and Karla I will def. check it out.

Sorry to hear you've returned to this site under these circumstances.  I've been fortunate enough to be pain free for 4 & 1/2 yrs also, this coming August will hopefully make it to 5 yrs without a CH. 

I also have stayed away from this site, checking in every 6 months or so just to read and maybe offer my 2 cents of support to some newbie, so I relate with some of what you wrote.  I also have imitrex and prednisone and verapamil saved in a bag in my closet just in case. 

The good news for you, under the horrible circumstances that your remission is over, is that you have a wealth of knowledge here on this site and the majority of replies you will receive are from sincere people who understand your pain. 

Hope your cycle is not that lengthy and is minimal on the KIP scale.  PF wishes to you.  Gregg in Las Vegas

4.5 ...wow!  Nice.

Hope it is a short cycle.

Root