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Message started by jonmach on Nov 30th, 2010 at 9:21am

Title: Dear God not again
Post by jonmach on Nov 30th, 2010 at 9:21am
After a Solid eight years of remission from 20 years of a living hell I find myself once again face to face with the beast.  I cant seem to stop crying.  fear, yes. sorrow, yes.
shame, yes.   I am speechless.  i truly was not expecting to have to deal with this again.   The woman in my life has never had the pleasure of seeing someone enjoy the sadistic pleasures of a full blown cluster.  and really still hasn't cuz although that wasn't fun last night it weren't shit compared to whats coming if i cant get this cycle interrupted.  that was only the second one and lasted 10 min if that.  it was everything i could do to stop her from dialing 911.  i am so sorry honey please don't be scared.
i told her about them but she had no idea.  as most dont.
i guess my tears are more for her than me.  not sure if i can put someone thru this again.  but whats the alternative.  didnt know where to go so here i am.  thanks for listening
God Bless
Jon

Title: Re: Dear God not again
Post by Lauren17 on Nov 30th, 2010 at 9:50am
And here we are- for both of you!

There are so many things that have worked for so very many people. For my husband high flow oxygen is very effective- please read the yellow tab to the left for more information. And if you have tried it before please try it again with the new technique all these fine folks have put together recently.

Melatonin has worked for very many, my husband included, for knocking out the night time hits. He takes 9mg an hour before bed, but some take more.

Your woman cares for you, and that is a gift I am so very happy you have. The BEST thing you can do is send her here. Helplessness is the worst feeling in the world, but in this instance neither of you have to feel it. I am a supporter too, and believe me all she wants is to help you. And she can. Let her research, hand you your pills, your oxygen, etc. Empowerment is a gift you can give her.

Hang in there - and a LOT has changed in the 8 years since you've had these, there are numerous treatments that are successful for many folks out there!

Title: Re: Dear God not again
Post by mikstudie on Nov 30th, 2010 at 9:58am
Welcome back DAMM IT.. Sorry you had to come back. 8 years and its back,I would be pissed too. But do read as said above there are most likely a lot of things that have changed. These supporters are awsome have you lady check in here and chat with them.

Good Luck!!!

Title: Re: Dear God not again
Post by Jimi on Nov 30th, 2010 at 10:03am
I understand Jon. It has been 10 years for me and while I handled them pretty well over the years, I believe if it comes back, this one would be the hardest.

Title: Re: Dear God not again
Post by BC_Battler on Nov 30th, 2010 at 10:03am
I am so sorry you are having to face the beast again, Jon. Know that you will find support here; for me, it's always been comforting to know that there is a community of people who know what you're going through. Stay strong.

Title: Re: Dear God not again
Post by Guiseppi on Nov 30th, 2010 at 10:04am
The longer the remission, the harder it seems to face the next cycle. :'(

That being said, let's get ready for this cycle so your life gets disrupted as little as possible. Do you have oxygen? (a must!) A decent prevent med like verapamil, lithium or topomax? Do you have imitrex, either injectable or nasal spray? Have you read of the success people are having using energy drinks to abort attacks?

Give us a run down of HOW you deal with your CH, both preventative and abortive. Also, take a look at clusterbusters.com     they're showing some amazing success stories with alternative therapies.

Joe

Title: Re: Dear God not again
Post by jonmach on Nov 30th, 2010 at 10:41am
I got complacent with my nutritional regime and wala welcome back.  it is my fault and i will get it under control.
i will post a new link with my story of how i have overcome this demon and mastered it.(fingers crossed) especially if i can interrupt this cycle and go about the loveliness of no frigging clusters.  my entire career changed to preventative heath care on a very professional level of implementing wellness in to physicians practices.  all based on my life of clusters and the endless pursuit of a pain free world.  i have been down many roads that few outside this place will ever know.  specialist after specialist drug after drug holistic after holistic.  all have their place and positive or not, all were bricks in the path therefore blessings.  when i first started getting relief and success is when i found this site.  i was met with doubt and obstruction and even told i didn't have clusters.  i just figured the one who was doing it had got so accustom to identifying himself with his clusters he really did not want to be better.  so my stint here was brief.  I am back and already feel better and know i am not alone.  (cried my way thru your reply's)  Thank you all so much.  My favorite thing on this planet is giving and helping others in need.  i shall do so here as well. 
God Bless and will talk soon
Jon

Title: Re: Dear God not again
Post by starlight on Nov 30th, 2010 at 10:59am
Hi Jon,

I feel for you--my CH came back recently after the longest remission I have ever had, and after starting to think they were gone for good it was really depressing when they came back.  I am having some success now using verapamil, melatonin and dramamine (or benadryl--do not take both dramamine and benadryl at the same time) at night.  And also O2.  I think it is really hard when you kind of forget you have CH and then all of a sudden you are forced to deal with it all over again.  Please let us know how you are doing over the next weeks.

Title: Re: Dear God not again
Post by Linda_Howell on Nov 30th, 2010 at 11:15am

Quote:
shame, yes.


Why shame Jon?   This isn't your fault.  Not like you purposefully did this to yourself, ya know.

Please do some reading around here because like someone said....a LOT has changed since your last cycle.  Especially read the oxygen link to the left, and yes....please ask your partner to check into the supporters board.  There are some ladies there who have been around the block with this condition of their husbands (for decades)  and will help her tremendously.

Linda

Title: Re: Dear God not again
Post by wimsey1 on Dec 1st, 2010 at 8:00am
You're right, of course, Linda. These aren't our fault, and that's part of why the discovery these are a primary headache and not the secondary result of something we did or didn't do to ourselves, is so freeing.

But shame isn't guilt. Guilt is the sense we did something wrong. Shame is the sense that there is something fundamentally wrong with us.

Either could fit here. CHs could engender both feelings, as in: maybe if I hadn't (insert your favorite guilt trip) or I (God, the Universe, Kali, whomever) must be really ticked at me to give me these things. The first is guilt, the second is shame, and we've seen plenty of both.

I think most use them interchangeably, and that's probably the case here. Still, as you say, it's good and necessary to remind ourselves and others: you didn't do it and you aren't "wrong" in and of yourself.

God bless! lance

Title: Re: Dear God not again
Post by starlight on Dec 1st, 2010 at 8:12am
Lance,

Good post--really good post.  That was helpful for me to read this morning also.

Title: Re: Dear God not again
Post by Guiseppi on Dec 1st, 2010 at 8:22am
Lance, I said early on I thought you'd be a valuable resource for this board, you have not proven me wrong.

Joe

Title: Re: Dear God not again
Post by wimsey1 on Dec 2nd, 2010 at 8:17am
Thank you guys. It is an honor to be here. Blessings. lance

Title: Re: Dear God not again
Post by maryo on Dec 2nd, 2010 at 4:57pm
Jon, with so much good support and advice at your disposal, you will be on track again soon, I'm sure.

What I hear in your post is the unpredictability of CH which is so maddening. This did not happen because you let your guard down, hon. It's the nature of the beast. It's a wonder any of us keep our sanity.

Title: Re: Dear God not again
Post by Guiseppi on Dec 2nd, 2010 at 5:11pm
It's a wonder any of us keep our sanity.

You've said a mouthful there Mary! ;D

Joe

Title: Re: Dear God not again
Post by Kate in Oz on Dec 2nd, 2010 at 5:43pm
Hi Jon,

I'm so sorry to hear that your back in cycle.  Like the others have said there are plenty of things that you can try in order to eliminate/control the pain.  If I were you I'd definately look into getting a script for high flow oxygen - for many of us here it has proven to be the best abortive available, no side effects and works quickly!

Good luck, keep posting and let us know how you're getting on.

Kate

Title: Re: Dear God not again
Post by jonmach on Dec 5th, 2010 at 2:07am
making bean soup at the end of the battle.   wasnt to bad.  still not quite focused.  in my defiance of no life interruption im cooking up the ham bone at 130 am.  holy moely i did not miss these bastards.  i am making progress on them only a few getting thru.  havent got my 02 yet.  but since the last couple hour were so special i will have it tomorrow. 02 and bean soup.  i cant wait to share my story with every one here because it does offer hope to some that feel there is none.  i just need a lil more brain power to do it.  i promise i will soon.
as for the shame i think i would re word it to embarrassment.  all the people in my life now never had to see something like these affect someone.  and i would rather keep it that way.
JON

Title: Re: Dear God not again
Post by julyn on Dec 5th, 2010 at 5:19am
hallo jonmach... and you all...
I can relate.I had the super chronic version(every day 3 - 15 times a day) for almost 14 years.I got rid of the nasty monster for almost two  years.Unfortunately about 2 months ago it came back.I have the oxygen the pills and all the other necesary implements but they help only mildly.I did the same.. began directly looking at what i did wrong...to no avail.When i had it every day for so long it became normal and expected.This one has hit terribly hard.I now know what it is like not to have them and what being able to live life feels like.As a result even though the pain itself is severe enough however i cannot seem to stop crying.The emotional hit is the biggest yet and one that I cannot seem to let go of even though i am almost sure it doesn't help my brain pain any.
I don't know exactly what I did to get rid of it the first time.I changed many things but wish i knew exactly so i could free you all.
I feel for all of you that suffer as I am absolutely sure that a) it is definately not our fault and b)we DO NOT deserve this.
We must know that.
God Bless us all and may He once and for all kill the beast or at least take it to another planet like maybe Pluto!!!

Title: Re: Dear God not again
Post by jonmach on Dec 5th, 2010 at 6:51am
NOTE TO SELF do not attempt cooking directly after a ch damn near burned down the house. wife screaming smoke so thick i couldnt see my hand in front of face.  all is well other than the stinch of burnt ham bone thru out.  Thank God it went no further.  i feel like shit gonna try and catch a nap.  and hallo to you also julyn thanks for the visit.

Title: Re: Dear God not again
Post by wimsey1 on Dec 6th, 2010 at 7:57am
I absolutely understand the desire not to have our pain displayed in public. It is more than embarrassing--it is an attack on our humanity. Not too long ago I was visiting with my daughter at her college, it was pouring rain, and I forgot my umbrella. I also left my O2 tank in the car. Of course the beast came knocking. I made my way to the parking lot at all due speed, crawled into my backseat, and started huffing away. People came and went, would look at me, and not one ever asked if I was OK. Not that I wanted them to, mind you. It's just they were as embarrassed as was I. I consider these attacks a private matter, and I've noticed they scare the s**t out of everyone who sees them. Scare me, too, but I know the beasts ugly face. Do what you gotta do, friend, and take care of yourself, trust your loved ones to keep lovin' ya, and screw what others think. lance

Title: Re: Dear God not again
Post by Bob Johnson on Dec 6th, 2010 at 1:10pm
If I were still in practice and we were talking about your CH I would be shifting the focus to those thoughts—guilt, shame, fear—which color your opening message. These states of mind, of thinking, are strong triggers for emotional suffering which compound the experience of physical pain.

One of the most effective methods for blocking this suffering has emerged over the last 20+ years. I used to post this piece here but stopped doing so because no one, except for a few people who learned it during their private counseling experience, was willing/able to give it a try—and, I admit, it takes some consistent practice and regular use to make it effective. But I still have faith in it! – and it has helped me thru my CH, cancer, and such tid-bits. Hope you will give it some consideration.
==========

PAIN VS. SUFFERING

Please, reader, do not approach this little essay as an alternative treatment or cure for CH! Nothing outlined here is a substitute for good, sound medical care and treatment.

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.

As you read our messages about CH they fall into two broad categories: causes, prevention, and treatment; and, the subjective experience or emotional side of CH. 

A sample of the "experience" messages which we see are along the lines such as:

"Ch is horrible; it never stops!" (Or it will never end; or they will go on all my life, etc.)
"I can't bear the pain!"

" Nothing makes me feel better!" (Or no medication works; all have failed and so on.)

"It's not FAIR!" (Or variations along the lines of, "why is God doing this?", "am I being punished?")

"I feel so GUILTY!" --because of how I burden my family or can't work, etc.

"The WORST thing in my life!" (Or some variation on how CH is a catastrophe that I can't handle.)

(Before moving on, you may recognize this concept as the core of cognitive therapy or Rational Emotive Therapy. These therapies are rooted in the basic idea that how we think about an experience creates corresponding emotional reactions--for good or bad. The research on the effectiveness of this approach is very good; outcome research shows that it is an effective form of therapy for depression, anxiety, and addictions of various types.)

Cognitive therapies teach people to recognize:

A. These thoughts may be spontaneous and automatic but,
B. They are not rational thoughts, and so, in their very lack of reason they,
C. Stimulate emotions which are disruptive, distorting, and which intensify the difficult experience of CH and,
D. This style of non-rational thinking and the associated emotions tend to spill out (generalize) into our larger lives affecting relationships, our beliefs in how effective we are, how well we are able to run our own lives, and so on.

IF (and this is often difficult to both see and to accept!) we can begin to see HOW our thinking may not be fully rational and HOW these ways of thinking feed our SUFFERING--then it may be possible to change our thinking habits.

The next step--past a willingness to consider that we may be thinking  this way--is to learn how to dispute with ourselves, that is, how to argue that our own thinking is not reasonable, that it is self-harming. Then we learn how to change these thinking habits (with the goal in mind that by changing how I think about my experience will change how I feel, how my emotions affect me.)

(Understand that this is an outline of a fairly involved process. I'm just trying to quickly summarize how this method of self-help works. Sources of material are at then end.) So, let's go back to the sampling of expressions which we see in our messages about CH and see how cognitive psychology would deal with them.

1. "CH is horrible; it never stops!" First, recognize the despair and hopelessness which arises from this statement: where will this line of thinking take me? So, we learn to respond more rationally, i.e., "Yes, it's hard pain--but it has always stopped even when I don't treat it. I can survive this attack as I have every other one. I need to do what I know helps."  The long term effective of this change in thinking is to increase self-confidence and a sense capacity to benefit ourselves.

2. "I can't bear the pain!" Response: "I always have. I know pretty much what to expect; I've got some medication which helps. I can bear the pain because I always have!"  Notice, this is not a denial of the pain; it's not a "let's pretend". The goal is to deal with the reality of temporary pain; pain which, as bad as it is, has always stopped with our return to reasonable well being. It is the denial of this, our personal experience, which arouses suffering and despair.

3. "It's not FAIR!", or thoughts of GUILT, or that I'm being PUNISHED. Response:  "This is my body not working right; it has nothing to do with morality or sin or fairness. My job is to care for ME, NOW, not fret about fairness." (The consequence of  an appeal to "fairness" is that we become victims. The problem with "guilt" is that we have to find a "sin" which justifies having CH or we must convince ourselves that we have chosen CH to avoid something or to hurt someone, hence, our sin. In the end, this line of thinking is not reasonable or rational and serves to create more suffering.)

4. "CH is the WORST thing in my life!" I often see folks express in their messages a sense of anticipation, of feared expectation about the next attack of cycle. There are few responses which lend themselves to the development of suffering better than this one: waiting for pain; looking for the next sign; assuming that it will come. Reflect a moment on what the impact is on our emotional well being and you may begin to appreciate why changing thinking habits is of value.  How to respond?  "It is the worst experience--when it's occurring--then it's over and I return to my full life. My whole experience says that I'll come through the next  one--when and if it comes. I don't have to wait and look for it; there is living to be done, now."

If you are interested in exploring this way of altering your thinking habits there are three readily available sources of information:

1. Go to Amazon.Com and put "rational emotive therapy" in the book search box.

2. Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE and get the catalog. (This is the homebase for Dr. Albert Ellis, the founder of Rational Emotive Behavior Therapy.)

3. Look for a paperback, FEELING GOOD: THE NEW MOOD THERAPY, David Burns, M.D. While this title is written around the issue of depression, the general framework can be applied to coping with cluster headache.
  This is true for many of the titles you will find at #2; REBT and  Dr. Burns' cognitive restructuring approaches have been used for a wide variety of problems--the general framework is fairly universal, in this sense.

Title: Re: Dear God not again
Post by jonmach on Feb 13th, 2011 at 1:43pm
Have not been in here for a few weeks and just re read the entire post and wanted to give a quick update and a thank you to all who have posted. 
great one on the bottom from Bob.
  all should read and heed the advice ion this post thank you Bob.
I have been pounding my nutritional s from high powered anti oxidants to vitamins to omega fatty acids and it has had effect from aborting to lessening the duration of my attacks.
  went and had an MRI of the brain to satisfy my other half that there is no tumor or cancer in there causing this.  Certainly wish she would not have ever had to meet the beast that dwells in my house but she has been great. 
i have stayed off the classic drugs as i gave them up years ago for many reasons mainly none of them worked for me and at least i can be half normal between headaches with out them.
i have been seeing a very high end acupuncturist for 11 treatments so far and would say jury is still out
but i think it may be helping the last week or 2 and will continue the treatments for 5 to 8 more and then judge.\  i decided i would spend  $1,000 and then evaluate ive now decide i will spend 2k then decide.

my attacks have been 20% of their youthful selves thank god, but still debilitating and exausting.  i feel i am getting the upper hand on them and will continue pounding water pounding o2 and nutritionals, qi gong and breathing.  My wish for you all is a pain free day and life.  God bless and will talk soon
Jon Mach

Title: Re: Dear God not again
Post by Samiam on Feb 15th, 2011 at 10:49am
All I can say is Wow!  What an informative thread.  I'm so sorry that you are dealing with this again.  I truly feel that it's the ones that go long remissions that have the hardest time dealing.  We develop a sense of normalcy and we let our guard down and for many, also are unprepared for what's coming.  It takes us time to come up with a game plan.   

Most times making a racially decision in an irrationally frame of mind is not something that many of us can do so we turn to people that can think for us.   This is the place.

As for someone seeing the beast.  I never ever thought of this.  It's part of who I am.  If they love me all I can do is prepare them for what may happen and hope they will be there when the cycle ends.  I guess maybe this way of thinking is due to having them since I have been 17.  They came after I was dating my now husband and they just have been there most of my life.  I'm married 28 yrs and there were many trips to the ER in the middle of the night and many nights that I would totally lose it due to the pain and not having the things that I needed to help fight this.  It's only been within the last 15 yrs have I had meds and only within the last 5 that I even knew about oxygen.  Try pacing while 8 months pregnant with no meds or oxygen.  We are stronger then we think.  I made it through another cycle with the help of this site.  This is home and this is where I come when I need someone to understand without explaining.  I'm about 4 weeks out from my last hit so we will see what happens.  In the mean time I will try to pay it forward.

Blessed be,
Sami

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