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Topic: How long til it stops? Quality of life thing..... (Read 376 times) |
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E-Double
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How long til it stops? Quality of life thing.....
« on: Jun 26th, 2004, 4:32am » |
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I already feel such a strong bond to you guys, WOW!!!
and such enormous appreciation!!
I know there are so many variables when it comes to these things and we all have different durations and intensities but I was curious since mine have taken taken such a different swing. Thus I found you all...
I know that I will prob. be in need of diff. meds (posted that elsewhere) been on stuff for near 2 weeks and don't seem much change.
Anyway curious about :
Average cycles??
How long to break it?
Just trying to figure this out to be honest.
So much seems to ride on these things.
How do we work and function when things are really bad?
What about the all day Shadows? Seems like attack >>shadow>> Pacer>> attack>>> like a freaking videogame. I swear I'm gonna have myself videotaped. Freak show!
Freaking pacing and then the attacks!!
Still can't find a pattern or triggers and just frustrated.
Also are there any in person support groups?
Or hotlines other than the "suicide crisis preventions" NOT NEEDED
Have people had to completely restructure their lives??
Thanks all!!
Best and quick relief!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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UN_SOLVED
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Re: How long til it stops? Quality of life t
« Reply #1 on: Jun 26th, 2004, 6:09am » |
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Average cycles??
Mine is NOT Average, but I'd say an average cycle last approx. 6 - 9 weeks maybe. Number of attacks per cycle can vary in frequency / intensity.
How long to break it?
That's up to the beast unless you get lucky and find a good preventative that works for you. Many do though ... many don't !
Also are there any in person support groups?
YES...RIGHT HERE ! WE ARE HERE FOR ANY CLUSTER SUFFERER
Have people had to completely restructure their lives??
YES. My life has been completely changed due to CH. I also had to stop my classes at IU (as a CSCI major after 3 years) because of these relentless HA's.
Not to even mention changes financially, socially, emotionally, relationshipwise. Things are alot diffferent now.
Hope you don't have such a rough time with this
Goodluck
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don
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Re: How long til it stops? Quality of life t
« Reply #2 on: Jun 26th, 2004, 8:31am » |
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My lasr cycle took 9 brutal months of night and day Kip 8-9. Averaged about 6 per day. Nothing would stop it.
I've also had a cycle last less than a month effectively treated with verapamil.
The only modifications I ever make is to let my employers , family, and friends know what is going on should I need any slack.
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| « Last Edit: Jun 26th, 2004, 8:33am by don » |
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E-Double
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Re: How long til it stops? Quality of life t
« Reply #3 on: Jun 26th, 2004, 9:50am » |
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Hey all,
Acording to this board I'm no longer a "newbie" but as a Junior asking these questions and having them answered really helps. I do appreciate it very much
I'm also trying to figure out the whole quoting thing so don't get pissed Jonny(if ya happen to read this)
on Jun 26th, 2004, 6:09am, UN_SOLVED wrote:Average cycles??
Mine is NOT Average, but I'd say an average cycle last approx. 6 - 9 weeks maybe. Number of attacks per cycle can vary in frequency / intensity.
I'm on week 5 but finishing week 2 on meds for the first time. Like I said when I joined this group. Having them was something I had learned to get used to because doctors and I were uneducated and because the cycles and clusters were short (they said Allergies) and just occurred @ night. They are now scattered all over the damn place and I can't seem to get a grasp. The most intense are of course the ones that get us @ night out of bed. But I guess for me the fact that they(major attacks along with paninc attacks) now occur during the day has just made me crumble. I'm used to being the "rock" and the one who takes care of everyone else
How long to break it?
That's up to the beast unless you get lucky and find a good preventative that works for you. Many do though ... many don't ! That bites but I truly appreciate the honesty/reality
Also are there any in person support groups?
YES...RIGHT HERE ! WE ARE HERE FOR ANY CLUSTER SUFFERER
I absolutely agree!!!! This has been the best place for me and I'm sure it will continue to be as I am the type to extend support and friendship as we all appear to be. Maybe someday can do it in person
I guess I was asking about local spots/places where we can "pace" together or say" Hey there: I'll gladly poke out your eye out if you scrape my hypothalmus!" 
Have people had to completely restructure their lives??
YES. My life has been completely changed due to CH. I also had to stop my classes at IU (as a CSCI major after 3 years) because of these relentless HA's.
Not to even mention changes financially, socially, emotionally, relationshipwise. Things are alot diffferent now. I'm so sorry to see how this effects everyone
Hope you don't have such a rough time with this Will ge through things with people like you and to those who extend there hands and wisdom
Goodluck
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I wish all the best and unfortunately it appears like most my life has been and will continue to be altered! I am trying to empower myself before falling deeper into a desperate depression!! Life sucks but that is ok!
I was developing a nice clientele, a private practice, lecturing, consulting and I'm getting married in November (She is so damn amazing) The guilt that you feel is tremendous for having it effect everything.
I could deal in the past with the agony @ night because they were brief cycles and worst thing was that I would burn out form exhaustion for a month. I could still do my job.
Now self employed .... It is a bit scarier especially no work= no$$$ despite the fact that I can make more in 1/2 the time I did teaching n schools it is still nerve wracking.
I am here just seeking the advice of new friends and the support is appreciated and as I become more educated my wealth of knowledge can be shared as well.
Take care all,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Kevin_M
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Re: How long til it stops? Quality of life t
« Reply #4 on: Jun 26th, 2004, 10:03am » |
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on Jun 26th, 2004, 4:32am, E-Double wrote:Average cycles??
How long to break it?
Just trying to figure this out to be honest.
Still can't find a pattern or triggers and just frustrated.
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Average and how long are not questions which can at
this time give you a good answer if you started the meds for it two weeks ago. It has a ways to go. But don't worry about something you don't have control over. Keep with the docs until a mixture of right meds can help you cope with it better.
It seems the shadows forebearing the onset has you worried a lot. That isn't going go away tomorrow and emotions are necessary for appropriate decision making. Take into account the the real threat that
exists and navigate the best path you can for yourself through it.
Usually you need to temper any fears with hopes in order to endure them. However, pinning hopes on a short cycle or finding the elusive and maybe non-existant pattern or trigger may not be the correct hope to do this with. Knowing you have the correct "tools" to deal with this will be needed on a daily basis.
Due the best you can for yourself in attaining and adjusting these tools and maintain a routine with them to keep your life free from the any anxiety they may bring to it.
Try to maintain some sense of control over the situation by finding out your choices for dealing with it. In extreme situations it is an act of defiance to live your life on your own terms. When moments of doubt deflate you, the people here are a model of hope.
Kevin M
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E-Double
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Re: How long til it stops? Quality of life t
« Reply #5 on: Jun 26th, 2004, 10:49am » |
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on Jun 26th, 2004, 10:03am, Kevin_M wrote:
It seems the shadows forebearing the onset has you worried a lot. That isn't going go away tomorrow and emotions are necessary for appropriate decision making. Take into account the the real threat that
exists and navigate the best path you can for yourself through it.
Usually you need to temper any fears with hopes in order to endure them.
Try to maintain some sense of control over the situation by finding out your choices for dealing with it. In extreme situations it is an act of defiance to live your life on your own terms. When moments of doubt deflate you, the people here are a model of hope.
Kevin M |
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Nailed it!!!
I am a trained in Behavior Analysis and despite knowing what is going on with my "feelings" and behavior it still is difficult to tackle. Anxiety can be very destructive. With other disorders it can certainly perpetuate them. I will assume that there are others out there with CH that get panic attacks. There has to be. Loosely speaking: (Behaviorally) when such an aversive event occurs such as the "Deamons" anything tied to it will set off CER (Conditioned Emotional Responding)= Anxiety, therefore when we get the shadows this can set off a whole sequence of events that can just shut you down!!
Do people go for additional counceling??
I certainly plan to!! I do not mean the "how does this make you feel... or you were obviously weened from mommy's tit too soon!" but Cognitive Behavior Therapy/Behavior mangaement/career counceling, things of that nature.
Anyway thanks for understanding & you all are certainly models of hope!! 
eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
UN_SOLVED
New Board Hall of Famer
I need a fully-automatic Imitrex injector !!
Gender:
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Re: How long til it stops? Quality of life t
« Reply #6 on: Jun 26th, 2004, 11:26am » |
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on Jun 26th, 2004, 10:49am, E-Double wrote:
Do people go for additional counceling??
I certainly plan to!! |
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There's nothing wrong with seeking counceling. Alot of people do. ANYTHING that can help someone 'cope' is a good thing.
HA clinics like MHNI require you to see a councelor before admission to their hospital. (all HA patients) I believe you are required to see a councelor if you become a patient (or just see a doctor) there and have been diagnosed with CH.
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Kevin_M
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Re: How long til it stops? Quality of life t
« Reply #7 on: Jun 26th, 2004, 11:54am » |
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on Jun 26th, 2004, 10:49am, E-Double wrote:| when such an aversive event occurs such as the "Deamons" anything tied to it will set off CER (Conditioned Emotional Responding)= Anxiety, therefore when we get the shadows this can set off a whole sequence of events that can just shut you down |
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For me, knowing I did everything I could do for myself and I am as ready as I can be, relieves any thoughts of anxiety. The distress comes from enduring the attack. But when its over, that seems to dissipate too. It just becomes a matter of the place and the situation where it happens. The simple thoughts of getting/taking an abort and getting away is the only concern.
Having hope, can have a positive domino effect
just as anxiety can have the same negative domino effect. No use compounding an already bad situation. Preparation and support is essential to that.
Pre-warning shadows, for me, conditions a response of acting correctly and quickly within the surroundings. Anxiety can interfere with those thoughts. Of course operating with a certain amount or urgency can tax you beforehand when options are not there. Preparation helps.
Your job being social and public can make that sudden sense of urgency seem desparate, but get the right prentatives that you can have confidence in and carry what abortives you can and catch them in time. Don't know what else to say right now. If you are thinking about what you are going to do about your job and having these clusters, do both jobs. The clusters may not go away but the job can. You have to fight for that.
If you feel you need help, then seek it. It is probably not uncommon.
Kevin M
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| « Last Edit: Jun 26th, 2004, 3:47pm by Kevin_M » |
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Mac_Muz
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Re: How long til it stops? Quality of life t
« Reply #8 on: Jun 30th, 2004, 8:07pm » |
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I am one of the lucky ones, but not so long ago was about where you are now....
These were my first ever, and so I took it as sinus from hell, as the leaves in NH USA were poppin out.. I don't have allergies, and so it had to be pollen's...
I had it! One day and sought out a doc.. Doc said Ch right off the bat.... I was doin a HUH? Whats a Ch?
That was about 5 weeks into the time which became about 9 weeks over all...
I pretty much said what you said and was wondering just what needed to be changed.... I got Imitrex pills which didn't do squat, then the mister nasal device thing which didn't do squat, and then the injector pen which worked but kicked hard....
I found this place about then and had been changing my routines, which changed more, when I found the Q Tip tricks which worked for me, and what worked best with the least costs and the least shawdow was Jonny's words of advise using O2 from my welding set up, which I had on hand...
You won't believe this, but I was pissed off when these CH's left, as I was at war, and wanted them back!!!
I was just getting to understand my enemy, and it went poof...
I had a few shawdows during times I was away from my O2, and that bugged me some, and I carry the pens to this day, but have no real need to do so....
Getting off a few hundred miles is not something I want to be caught by surprise in...
I guess what I am trying to say it this will interupt what your life was for a time, and if you are episodic like I am you will get your way of life back after these take a hike!
My experience was of winter to spring and I hope I get this back at Summer to Fall for a real work out and a test. I have not forgotten a bit of it, and will test more, but with out the CH being current I can't test much.
I don't like drugs in general, and so I tried to start small and work to what did it for me.... My time is my time and while I can't say I like a CH I would rather have it stick around to see what fight I can offer up...
Must be I am a sicko eh? Who in the world would really want these?
I can't wait to see what happens when they come back...!!!!
Thing is, I adapt easy to different things.
I hope I can find what works which is also cheap easy and healthy, and pass that on for FREE....
( probably I will learn more here than on my own, but I also mess in the 18th and 19th century for all manor of things from weapons to medicines)
Just incase anyone reading this wants me as a guinea pig, I am game.. Mac
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