:'( :'( :'( :'( F*** that illness that deprive me of my sleep.   F*** that illness that pushed me towards alcohol and drugs then detoxification.  F*** that illness that had me loose my wife, my house, my work and pushed me to the limits.  Tonight I'm hit like never.  I know I'm not alone.  I know you are there and suffer the same.  I'm invalid now.  Maybe some of you are?  Ok, I love O2 but I don't know how much more I can take right now.  I MUST SLEEP!
I'm pacing all nights and days, taking O2 and fearing to go to sleep, even with a F****** sleeping pills.  And what's more, it brought upon me psychosis and depression...  I'm tempted to go the alcohol way but even that IS NOT POSSIBLE  >:(
Excuse me for this message.  I know I should not complain but hell, that's the way it is tonight.  I need to write it down even if my English is piss poor.  It's the only place I know here that knows about CH.  And I'm angry... yes, that's it.  Angry and...  I will stop there.  Good night Folks.  Someone I know who suffered the same illness did the final move...  a rifle bullet in the head.  He could not stand it anymore.  He was know by my family...  Damn, the whole city.  He seemed... well.  Now, plus I have to live with not nearly enough money, live with the pain, I also have to reassure my family about not killing myself.  Too much weight on my shoulder.  And when I call for help, when I'm really at the end of the ropes they say "oh! A migraine! Just lie down in the dark, take two aspirin and relax".
I'm sorry but...
[insert something here not very polite]
Moderators you can delete this message I don't care at all.  Just needed to tell someone or write to the great void.  Right now I have a Kip 10 waiting behind the right eye. 
End of communication, going for O2 once again. 

Huff and puff and beat that headache down.
I hate it for ya. Kick some demon ass for me.
Complain all you want. You have all of our permission.
the bb
I hate these headaches. >:(

...and when you're ready (it certainly seems like you might be), go to:

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and start reading.

Pomodoro,

I hope that you feel a tiny bit better for getting that out of your head?
We have enough shit with CH in our heads as it is!

We are sharing your pain, I am trying to make a bit of room in here, to lessen yours...
I know they are only words my Friend...its the only thing I can offer you....

What a Great place this.

Respect

Gary

Pomodoro, I'm going to take a major risk here and try to address a different part of your psyche...the part that still recognizes you are separate from and not defined by your disease(s), symptoms or handicaps. I am concerned because it seems to me you are beginning to equate these with who you are, rather than what is happening to you. This is a dangerous road and one that can lead to places you need not go. You have CHs; but they are separate from who you are. You are experiencing depression; but depression, and its emotional thought processes, need not dictate your decision making. I get you feel desperate; we all have from time to time. But I urge you to depersonalize what you are experiencing, enclose the symptoms and see them (not the medications, not the misunderstanding family and friends) as the true enemy to be defeated. It may not sound like much but our body will respond to our self-talk and the emotions we feed and give ourselves permission to feel. When it hurts the most get the most angry at the Beast, and the pain, not outside agencies. This is what it takes to surive and triumph in any disaster or crisis. Am praying for you. Blessings. lance

wimsey1 wrote on Feb 14^th, 2011 at 10:01am:

Pomodoro, I'm going to take a major risk here and try to address a different part of your psyche...the part that still recognizes you are separate from and not defined by your disease(s), symptoms or handicaps. I am concerned because it seems to me you are beginning to equate these with who you are, rather than what is happening to you. This is a dangerous road and one that can lead to places you need not go. You have CHs; but they are separate from who you are. You are experiencing depression; but depression, and its emotional thought processes, need not dictate your decision making. I get you feel desperate; we all have from time to time. But I urge you to depersonalize what you are experiencing, enclose the symptoms and see them (not the medications, not the misunderstanding family and friends) as the true enemy to be defeated. It may not sound like much but our body will respond to our self-talk and the emotions we feed and give ourselves permission to feel. When it hurts the most get the most angry at the Beast, and the pain, not outside agencies. This is what it takes to surive and triumph in any disaster or crisis. Am praying for you. Blessings. lance

Wow. There's a post I'll save, beautifully put Lance.

Pom, we freeze posts that attack people, not ones that so eloquently post just how negative an effect these things can have on your life. Keeping you in our prayers.

Joe

Thinking of you... and hoping that today is better.


Jeannie

Hi Pomodoro,

I am so sorry to see you in such a state.  This road is hard but listen to the words written by Lance.  He speaks the truth.  You are so much more than physical suffering.  Please don't let it define you.

It is good you are angry.  I know anger helps me when I'm getting my ass handed to me.  You just have to channel that anger into that grip on your mask and the pace of your walk and an extreme attention to detail in whatever works to kill the attack or even prevent the next one.  Channel it into bottling up the beast and grabbing your life back with both fists.

I hear you brother and I feel your pain.  Now show this devil just how angry you are and endure, continue that search for weapons to use against the pain.  But don't point them toward yourself or those who love you.  That is exactly what he's after.

-Dennis-

There is nothing more that I can say that has not already been said so beautifully by Lance.

I learned when the beast has gone that to ask why is not going to get you a answer.  There is no why me only how can I get through today.  This is the difference between a mind that is clear and a mind that is preoccupied with pain.

You can and you will.  I can and I have.  If it wasn't for this site a couple of years ago I don't think I would be here today. 

We care about you and we welcome you with open arms and together we will give you the strength to get through another day.

Blessed Be,
Sami

My friend we all understand where you are coming from. We ALL suffer the Beast and feel free to vent all that you need we will listen we will try to help. I like Lances comment best use the anger to show the Beast he will not win not this time nor the next time. If you need to vent feel free to send me a text or email. I am in week 2. Babe we ae survivors and strongest ppl I ever met.

I wish you peace this evening. My heart goes out to you.

Tabs

Keep kickin [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bash.gif] [smiley=bash.gif] [smiley=hammer.gif] [smiley=hammer.gif]

Pomodoro.. I hope you are feeling better today. nothing pisses me off more than "why don't u take Excedrin and sleep it off.
-Lance.. wow, i needed that too. It is so hard to not let this hell define me. more tips would be appreciated. My cycle started again 10 days ago, haven't slept for 2 days and starting to feel suicidal again. this has been going on since I was 20, now im 27 and showing no signs of getting better. will this ever go away? am i going to be dealing with this for the next 20 years? i'm not strong enough to handle this for much longer.

Akash,
ole buddy, ole pal. Clusterbusters.com
Hang tough. I have for 32 years. It dont kill you. You just have to get your timing and treatments down.
CH can be managed and lived with. I have proof. You have to the strength, use it. :o
the bb

Clusterheads are strong.  When we're not..... we've got each other to lean on.


Jeannie

Akash wrote on Feb 15^th, 2011 at 2:34pm:

Pomodoro.. I hope you are feeling better today. nothing pisses me off more than "why don't u take Excedrin and sleep it off. -Lance.. wow, i needed that too. It is so hard to not let this hell define me. more tips would be appreciated. My cycle started again 10 days ago, haven't slept for 2 days and starting to feel suicidal again. this has been going on since I was 20, now im 27 and showing no signs of getting better. will this ever go away? am i going to be dealing with this for the next 20 years? i'm not strong enough to handle this for much longer.

Take thebbz's advice, my friend. And shift your point of aim a bit. Too many of us are looking for "the cure." Our prayer is that research will uncover this cure for all of us. But in the meantime, the real focus needs to be on managing both the attacks and the pain. And this can be done.

Think of it as a daily/epsodic visit by a sadistic torturer, who keeps asking us questions we don't understand, kinda like in the movie Running Man. "Is it safe?" and no matter what we say, it's the questioning itself, and the torture that follows, that saps our soul, because we have no good or right answer. But if we decide to survive...to endure...to battle...and to keep focus on the torturer and not the "why" of it...we will find a way.

That's what we are doing here. Like prisoners who share a common and beastly torturer, we whisper around the cell block of our pain and say, "psst...the next time he comes around, try..." and this is our highest form of resistance.

Anyone remember the picture of the little mouse, standing with ears and tail drooping, badfinger upraised against the predator eagle swooping down to eat him...and it's called, The Last Great Act of Defiance. When it hurts the most, that's sometimes the best I can do...but I do it with all my heart and strength.

As Joe says, CH sufferers suffer less when they know more. Build your knolwledge base and be willing to try the stuff we have found works for us. Keep as many irons in the fire as you can, bullets in the gun (metaphorically) and when the beast comes 'round, take aim and fire with whatever you've got. Huff O2, bust, fuss, try new meds, whatever...but fight the real enemy and not yourself. Blessings. lance

My mood is better today. A bit better.  Last night I had to call a suicide hot-line.  It helped a lot to talk to someone about my pain and all.  My mom, who is 58 now, offered me to grow mushrooms for me since she's way better than me at growing thing.  I found a kit for 150$.  Do you think it's fair price?  Also, is there any books about growing mushrooms?

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Our sister board. Here they speak freely of the stuff you're asking. A great deal of experience over there in all aspects of the route you're looking into.

Hang in there.

Joe

Thank you guys so much. All of you are right. Thank goodness for the internet, this board, and clusterbusters. I'm sick and tired of being sick and tired, time to fight this beast with everything I got.
on a side note, have anyone heard of anyone with CH who has never done hard drugs (ecstacy, acid, etc..), never had major tooth work/problems including tmj, and never had digestive problems?

Quote:

have anyone heard of anyone with CH who has never done hard drugs (ecstacy, acid, etc..), never had major tooth work/problems including tmj, and never had digestive problems?

I have never done.. or had any of these.  Been chronic for 24 yrs.  I may have missed your point in asking.  What was it? 

My guess is like so many he's searching for that elusive damned reason, the "why" we get these damned things! :(

I'm with Linda, negative on all the above, 33 year episodic.

Joe

Akash wrote on Feb 17^th, 2011 at 5:10pm:

on a side note, have anyone heard of anyone with CH who has never done hard drugs (ecstacy, acid, etc..), never had major tooth work/problems including tmj, and never had digestive problems?

I experimented in college, have had two root canals and a bridge, was diagnosed with tmj in the mid-90's, and just took an immodium yesterday.

Brew wrote on Feb 17^th, 2011 at 8:42pm:

Akash wrote on Feb 17th, 2011 at 5:10pm: on a side note, have anyone heard of anyone with CH who has never done hard drugs (ecstacy, acid, etc..), never had major tooth work/problems including tmj, and never had digestive problems? I experimented in college, have had two root canals and a bridge, was diagnosed with tmj in the mid-90's, and just took an immodium yesterday.

;D  Did you sleep at a Holiday Inn Express too?

wimsey1 wrote on Feb 18^th, 2011 at 8:11am:

I experimented in college, have had two root canals and a bridge, was diagnosed with tmj in the mid-90's, and just took an immodium yesterday. ;D  Did you sleep at a Holiday Inn Express too?

Yes. But not last night.

Lance--I seriously think you should write a book sometime to help cluster sufferers with the emotional and psychological part of fighting the battle.  There really is no resource (with the big exception being this website) to address the toll that the affliction takes on our emotional well-being.  I just find your posts to be very intelligent and profound, and also compassionate.
So, thanks from me.  And thanks to everyone else like Joe who keeps my spirits up by giving very personal attention to every post and staying level-headed--
Don't mean to hijack this thread--just had to tell Lance he wrote some good words here.

Echo that sentiment starlight, and thanks for saying that...
Credit where Credit is due to you Guys (and Gals) on here.
This place and peeps here change a lot of lives for the better (and probably SAVE a few on the way too)

Deep Respect

Gary

Quote:

just had to tell Lance he wrote some good words here.

I'll send ya a new hat now Lance, bet the other one just got tighter. ;D ;D :D ;D ;D ;)
You are right Lance is the man
the bb

8-) Aw shucks, guys. You'se is da best! Blessings. lance

Just had a visit for the inalho (I think in English it's called Respiratory Therapist...whatever).
She lectured me on CH (like I don't know) and told me that I was an exception cause they have 4 clusterhead and they treat them with 4 litter per minute, no mask and only cannula (kind of small tubing).  And they were satisfied and I'm the first one they see that have a cycle ???  The others are hit once in a blue moon.  I told her then it's not the same illness we're talking about.  I dislike her.  She told me that if I go ever 10 litter per minute they will take action...  FUCK YOU!
My doctor told me it was ok, my neuro told me so and even at the emergency the nurse gave me O2 with cannula at low flow rate and when the doc saw me he told her that I needed 15 lt/m with a 100% mask, that this was useless for treating CH they way she had set me up, even if I told her the same thing before.  But these therapist, they know nothing or what?  What do they have again O2?

Quote:

What do they have against O2?

I don't know. I have a friend who has a form of COPD, and is on a constant flow of 1.5-2lpm. He wakes up with what I thought might be a low oxygen induced headache, so I suggested he just crank his flow to 5lpm just to clear the cobwebs. His therapist told him not to do that, that too much O2 was bad for his brain. Sigh. I know I'm braindead most of the time, but it ain't cuz of the O2. Too little time..so much falsehood to correct. Persist. Insist. Take measures to insure your health apart from the med community if necessary. Check out bustin'. You still have some work to do, my friend. Blessings. lance

Quote:

they have 4 clusterhead and they treat them with 4 litter per minute, no mask and only cannula (kind of small tubing).  And they were satisfied

I would SO like to sit down with these 4 clusterheads and talk to them.  >:(


Quote:

I told her then it's not the same illness we're talking about.  I dislike her.  She told me that if I go ever 10 litter per minute they will take action...

They will take action???   wtf does THAT mean,  do you suppose????  Arrest you for going over 10 lpm??


Quote:

nurse gave me O2 with cannula

   oh heavy sigh....

Pomodoro, you've been here a little while and I am certain you've read the links as well as a lot of the threads around here.  You need to be pro-active in your treatment.   Not that you haven't already tried,  but it seems to me that you, your wife, a good friend...someone needs to kick some ass or at least an advocate is needed to crawl through the red tape for you.

This kind of crap really pisses me off and I am so sorry that you are not being treated like you should be. 

If I could...I'd fly in & sit in on your next appointment with you.  At least I'd let them understand that their understanding of oxygen therapy is antiquated.

What news, Pomodoro?
-Gary

Well, I'm still in cycle but I'm a happy panda with O2.  Depression is usually a big issue but not this time.  In fact, I may have a good news pretty soon.  Touch wood. 
Two days ago I slept the whole night, 12 hours in fact.  After a month and a half of 3-4 hours sleep it was really great.
I think I'm at the end of my cycle.  I still feel the beast lurking behind my right eye but hey...  I have O2 so I feel safe.
Have a a good PF day everyone.

Pomodoro wrote on Mar 13^th, 2011 at 8:40am:

In fact, I may have a good news pretty soon.  Touch wood.

That sounds promising!  So glad to hear that you've had a good night's sleep, that's like a much needed vacation.
Glad you found O2 and feel safe.
Keep us all posted! :)
-Gary

I'm always amazed at what a single nights sleep can do to change your whole outlook on life! :) 02 can sure change the way you view the old beasty huh? Hoping the cycles done for this go round.

Joe