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the_watcher
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Feelings of anger
« on: Feb 13th, 2007, 7:40pm »
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I'm an old hand at being a supporter.  My husband has had clusters for 40 years and no signs of it letting up.  My feelings in the last couple of years have morphed into something that is hard to explain but here goes.  My husband has always refused to deprive himself of things he enjoys; ie ...food, cigarettes.  He knows when he is in a cluster period that there are things that will trigger his headaches and yet he will not stop eating these things or stop smoking.  I am to the point that I wonder why I stay awake worrying about how he feels if he doesn't try to help himself feel better.  He won't try the water x 3,etc.  I care about how much hurts so I try to talk to him about these things and I hear that his headaches do not affect anyone but him.  His head is really hard and he can take a lot of pain, so come on you clusterheads.  Give me some insite into this way ok thinking.  Do any of you out there do the same harmful things knowing it's gonna cause you a lot of pain?  Don't wanna hear about how hard it is to quit smoking; been there, done that.  At any given moment I could knock him down and take that cigarette from him and smoke it myself so don't wanna hear the whine about how hard it is to quit.  Give me some insite.
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Re: Feelings of anger
« Reply #1 on: Feb 13th, 2007, 8:28pm »
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Take care of yourself and as long as he is not throwing a pity part do what you have to do to get by during his cycle.
 
I do not have any triggers.
Smoking does not effect me either way. I had CH when I didn't smoke and had/have when I do.
Alcohol does not trigger an attack. I do not cockatail often but it does not effect me if I do.
 
We should not do certain things becaus ethey are bad for us in general not b/c it will effect the attacks.
 
If it is a trigger for him as you say they are then with all due respect, he is a putz for doing that to himself and just has to deal with the consequences.
 
Feel good and thanks for being you!
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Re: Feelings of anger
« Reply #2 on: Feb 13th, 2007, 8:41pm »
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I have had CH for 32 years, the first 30 chronic......if your hubby is doing triggers in cycle, let him have the pain....hes an assh-ole!
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Re: Feelings of anger
« Reply #3 on: Feb 13th, 2007, 8:59pm »
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The_Watcher,
 
I am a supporter for my husband who has CH and he is the same in many aspects. He is still smoking and eats whatever he wants and doesnt like the taste with water! I have felt frustrated just like you did.
 
However, I dont get upset or angry over it. Its not easy to do when you care so much, but this is how I see it.
 
It is his condition and he is an adult, he needs to learn to deal/take care of it himself. If whatever he does will cause him pain, its him who has to bear the pain then learn to stop it. If I couldnt deal with it, I walked away. Some day I stayed away all day until I was calm and cool enough to go home with a smile.
 
Secondly many of these things maybe triggers for some and not others. You may tell him that smoking cigarettes will trigger an attack and that he should stop, but unless he gets hit each and every single time he lits one, he wont. Many CHers find that cigarettes relax them and help them cope. The same goes for alcohol.
 
Power struggle is bad for any relationship, I believe. Telling your partner what to do all the time may be perceived as a power struggle or control. The only person you have immediate and complete control over is yourself. You can change yourself but you cant change anyone else. Attempting to do so will cause tension which can destroy a relationship. By all mean, voice your concern and offer advices, then back off and respect your partners wishes and decisions.
 
Finally, CH is extremely restricting to a sufferers. There are many many things they cant do while in cycle or while getting hit. They dont feel themselves, they are already dealing with very complex emotional issues that the condition brings. Sometimes stubbornly doing things they want to do is the only way to try to live a *normal* life and to continue to *live* despite CH. Imposing further restrictions at this point can cause severe depression from loss of autonomy.
 
I am not saying that I think smoking or eating bad food is the right thing to do, only that one has to look at the situation and the context, and decide which end results does one want, and which one is the lesser of the two evils.
 
Trust me, if whatever he does immediately trigger a real CH hit, he will stop it without you having to say a word. If it doesnt, then it may not be a trigger for him personally.  
 
Take care of yourself, give him the responsibility. Get out and enjoy YOUR time. Life will go on.
 
Hugs and all the best wishes.
 
Annette
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Re: Feelings of anger
« Reply #4 on: Feb 13th, 2007, 9:12pm »
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Annette,
 
Thanks for the reply.  I can tell you and anyone reading this that cigs and foods absolutely are triggers. He can handle monumental amounts of pain.  He  also has a rock hard head; I tell him he's bald because hair can't grow on a rock.    I don't pester him anymore; I also won't allow myself to get drawn into how bad his night was.  He has the power to control a little of his suffering.  As for how constricting medical conditions can be; tell me about it; I live with spinal stenosis, SI joint dysfunction and piriformis syndrome, so I also know that  sacrifices have to be made to feel better.  Just don't understand literally asking for it.
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Re: Feelings of anger
« Reply #5 on: Feb 13th, 2007, 9:19pm »
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on Feb 13th, 2007, 8:28pm, E-Double wrote:
Take care of yourself and as long as he is not throwing a pity part do what you have to do to get by during his cycle.
 
Smoking does not effect me either way.  
 
Alcohol does not trigger an attack. I
 
If it is a trigger for him as you say they are then with all due respect, he is a putz for doing that to himself and just has to deal with the consequences.
 
Feel good and thanks for being you!

 
 
Ditto on what Erik said; however, Alcohol is a trigger for me while in cycle thus I avoid it like the plague when I'm in a cycle ...
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Re: Feelings of anger
« Reply #6 on: Feb 13th, 2007, 9:36pm »
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I am really sorry to hear that you have serious medical conditions to deal with yourself, let alone his CH. It would make it extra, extra tough!
 
Sending both of you prayers, painfree wishes and hugs.
 
Annette
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Re: Feelings of anger
« Reply #7 on: Feb 13th, 2007, 9:41pm »
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on Feb 13th, 2007, 9:12pm, the_watcher wrote:

 
  I can tell you and anyone reading this that cigs and foods absolutely are triggers. .

 
I forgot to ask whether your husband is chronic or episodic ? Does he get an attack every single time he lits a cigarette? What sort of food have you noticed would trigger an attack for him ?
 
CH is not a very well understood condition. Mixing psychological/emotional/personality issues into it and we will confuse even more. When dealing with CH, quite often we cant understand why, just have to accept.
 
Painfree wishes to you both.
 
Annette
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Re: Feelings of anger
« Reply #8 on: Feb 13th, 2007, 10:52pm »
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Watcher, I can relate to what you're feeling too.  It is really hard sitting by and realizing that you can't do anything to change another persons behaviour.  In our early days of CH, I think my husband just wanted to believe that this really was all a bad dream and if he didn't deal with it, it would just go away.  Made me totally crazy since I had read about all sorts of things that could be done - at least to try to see if they would work or not.  Especially since like you say, his ha's affected everybody in the house, not just him.
 
Annette, your advice is worth reading more than once Quote:
It is his condition and he is an adult, he needs to learn to deal/take care of it himself. If whatever he does will cause him pain, its him who has to bear the pain then learn to stop it. If I couldnt deal with it, I walked away. Some day I stayed away all day until I was calm and cool enough to go home with a smile.  
 
.  
 
My big panic has always been that he is going to give himself a concusion (?sp) by banging his head too hard if I'm not around.  I've not read about anybody actually doing that here, so I guess it is an unlikely thing to happen, but it seems like a very real possibility sometimes.
 
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Re: Feelings of anger
« Reply #9 on: Feb 14th, 2007, 12:28am »
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on Feb 13th, 2007, 10:52pm, Major wrote:
 Made me totally crazy since I had read about all sorts of things that could be done - at least to try to see if they would work or not.  
  

 
 
We as supporters are desperate to help, so we go off reading and every time we stumble across something that may help or may make a difference, we desperately want our CHer to give it a go.
 
From a sufferers point of view though, he may not be so keen to try things that are not proven. I believe that almost all CHers go through periods where they themselves try anything and everything to stop this terrible thing that has landed upon themselves and changed their whole lives. Many are victims of inaccurate diagnosis for years, were subjected to trials and errors of treatments and medications that just dont work.  
 
Somehow, every single time they set their hearts and pinned their hope on something and it failed, a part of their belief died! With time, they become harden and just dont trust anyone, anything and dont feel like trying anything anymore.
 
The only way to get past this is with a lot of love and understanding, gentle suggestion and most importantly respect.
 
Share what you have read, discuss what you have learnt, subtlely drop some hints then back right off and give your CHer a lot of space and time to reflect. Soft flowing water can wear down mountains.
 
Painfree wishes to all.
 
Annette
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Re: Feelings of anger
« Reply #10 on: Feb 14th, 2007, 1:07am »
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on Feb 14th, 2007, 12:28am, BB wrote:

 
Share what you have read, discuss what you have learnt, subtlely drop some hints then back right off and give your CHer a lot of space and time to reflect. Soft flowing water can wear down mountains.

 
I have been on here as a supporter for a few years now.  My clusterhead is not a forum member.  It took a lot of gently talking to have him decide to try melatonin.  (the first time he did he got dizzy.  he had a heart attack a couple years back and got a little worried.  the cardiologist put that to restSmiley
He is chronic.  The way he copes with it is he focuses on the time he is not having a headache...We have been known to forget the o2 tank. (have to go back and get it thought,Doh!)
Don't feel bad about your feelings.  It's hard to watch someone you love be in that much pain.  
Heck, I recently did the when are you quitting smoking talk.  (after all I QUIT...lol)  
   
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Re: Feelings of anger
« Reply #11 on: Feb 14th, 2007, 1:31am »
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Dear Watcher, first off I am happy you came here and like others have said I hope you stay. It sounds like you have your plate full dealing with your own conditions Sad
 
 When I was first diagnosed I was forced to give up many things that are known to trigger migraines because at that time that was standard procedure for even getting a good clinic to take you as a patient.
 
 I stopped smoking both cigs and pot, gave up all pain meds, aged foods, pickled foods, alcohol, chocolate and a bevy of other possibles. As they were added back in none were ever found to be triggers. Of course pain meds and pot were not re-introduced and the nicotene was tried via injection. Doc. Saper actually did let me drink some red wine and I felt was surprised when it didn't set off a major hit.
 
 I am and was chronic so it wasn't a quick or easy elimination regimen because I would get hit anyway, of course now that I think about it it would be the same for an episodic since they wouldn't be at a live in clinic unless they were in cycle. I have since added most of the above back into my life since WTF why not.
 
 I am right now repeating the process on my own just in case things have morphed and because I don't know what else to try. If I could get 2 pain free days in a row I would never eat or drink whatever it was that I had identified never!!!
 
 Not sure what makes your Hubby tick but I agree with what others have said that it is his call and his alone.
 
 Best of luck with your medical ailments and Happy Valentines Day from just another stranger in a very strange land.......Tim
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Re: Feelings of anger
« Reply #12 on: Feb 14th, 2007, 5:56pm »
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Hello Watcher....welcome to the site.
 
I'm married to a CHer too....many years.  
Blake doesn't do anything to trigger CH.  NEVER drinks alcohol and avoids a few foods that he thinks 'may' trigger headaches.
 
However.....he can be frustrating too.  Like when he'll sit there trying to 'will' an attack away.  He waits to long to get on the 02 and that makes it sooooo much harder on him....or he will leave home and forget his meds.
 
I bet it's like some have said.....sometimes they just get fed up and say...."to hell with it!!!!"
 
Do the best you can for him, Sweetie (don't forget to take care of yourself too) and that's all you can do.
 
Good Luck....
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Re: Feelings of anger
« Reply #13 on: Feb 14th, 2007, 6:25pm »
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Hey Everybody,
 
Thanks for the input.  It's so nice to have someone who's been there to talk to.  
 
Just some info.  My  husband is episodic.  He will only take the verapamil and maybe 1/2 a Tylenol.  Used oxygen with success one year many yrs. back. The next time he tried it , he would wait until headache got cranked to try it.  Now he's decided without trying it for oh at least 12 years that the oxygen was going to fry his brain .  So that's out. Doesn't even want to try it again.  Won't try Imitrex, and the list goes on.  Ok, yeah some of the stuff doesn't work; some makes it worse, but hey Verapamil isn't performing any miracles around here.  
 
Guess it's like you said, his pain, his life.  I get tired of suggesting he try something else or even see the doctor.  He is convinced the headaches just have to run their course for that cycle.  
 
Anyone also have this same experience?  Like when he tried Sansert the headaches went on for about 5 months and just seemed to try to get worse every week until he gave up on that med and they just about killed him for 2 weeks until they tapered off and disappeared.    It seems like his headaches start out 7's and climb to some 10's for about 2 weeks and then fade away with more 3's or 4's.  
 
He is deathly afraid of the rebound headaches from meds but will eat mayo and smoke when he knows it will do the same thing.  Go figure!
 
Anyway that's enough of all that noise.  Hope everyone has a great Valentine's Day.  Thanks again for listening.  It's refreshing to be able to talk to people that understand this trip.  What the heck, as long as there is chocolate, I'll be fine.  If I ever have to give that up, I will be one mean woman.  lol....
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Re: Feelings of anger
« Reply #14 on: Feb 20th, 2007, 3:34pm »
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Hi Watcher, I read this whole thread and wondered about the food triggers.. I am one of those fussy eatters and don't like just about everything, except shell fish.
 
I smoke hand rolled bacca, and it seems with no problem.
 
My trigger is beer, or anything with alcohol.
 
I may have had the problem for years, but knot knowing what it was and thinking teeth, were the problem. I had more than a few pulled that a dentist would accuse me of being nuts for, in other words nothing was wrong with the tooth.
 
Once I learned what this was I could tell a beer was a trigger.. One day I might have a beer and be fine, but in my season a 1/2 beer will tell me this is a problem.
 
I learned too, the oxygen must be done asap, or else it takes longer.....
 
The imitrex is the only way for me to abort, in a cut down dose using the injectors.
 
I have a milder case than most with about a 8 weeks in either winter to Spring (now) or Fall to Winter.
 
I found this place after my worst attacks since I didn't know to stop beer. I am no hard drinker either being a limit of about 3 is it for me.. Normally thats is a bit much too, and my more or less normal is a beer in afternoon with just 1 more at dinner.
 
I get wicked angery with the demons, but not at people.
 
I am angery now at these demons and for those who suffer much more than I do.  
 
On the other hand I am a hard headed fool too. In almost all other pains I can still function, even with broken bones. Of course that just isn't this type of pain.
 
Anyway I am more interested in what foods you both consider triggers.. If you tell me I will try some since I am in season and see if they bother me...
 
That might not mean anything, and then maybe it might.. Mac
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Re: Feelings of anger
« Reply #15 on: Feb 20th, 2007, 9:30pm »
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Mac,  
 
It might not be a good idea to eat certain foods to see if they trigger.  How about cutting out some foods and see if you feel better.  For my husband it's all the things that would trigger a migraine.  Even though he has CH, he does get the "migraine aura"; spots floating, etc.  
 
The usual triggers are cigs, alcohol, anything with vinegar, deli meats with sodium nitrate (just as bad or worse as alcohol for him), corn, citrus fruits, beans, freshly baked yeast breads and the list goes on.  One of his worst was after he ate steak sauce, which the had never wanted before.  Our son was eating it and so he just had to have some.  
 
Can you usually eat whatever you want?  My husband gets so tired of being limited during a cycle that he thinks just a little won't hurt him.  Wrong!
 
You sound like my husband.  Thank God his pain threshold is very high.  Whatever it is (after experiencing CH pain), he says it'll be alright.  
 
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Re: Feelings of anger
« Reply #16 on: Feb 20th, 2007, 9:57pm »
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on Feb 20th, 2007, 9:30pm, the_watcher wrote:
(after experiencing CH pain), he says it'll be alright.  

 
And it will be!
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Re: Feelings of anger
« Reply #17 on: Feb 20th, 2007, 11:56pm »
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on Feb 20th, 2007, 9:57pm, Jonny wrote:

 
And it will be!

 
 
Every now and then, Jonny says some thing right !  Smiley
 
 
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Re: Feelings of anger
« Reply #18 on: Feb 21st, 2007, 10:13am »
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I'm sorry, I gotta chime in here.  I've read this thread and your other thread (over in the deep end of the pool).
 
I have a really hard time with this whole theory of triggers.  The ONLY known trigger for cluster is nitro-glycerine and it will trigger an attack for a clusterhead even when out of cycle.  Nothing else will, ok?  To be a true trigger, that's the qualifier - if it will launch an attack when out of cycle.
 
I've been married to my clusterhead for nearly 20 years.  Sure, I've seen him have things that seem to bring an attack on quicker maybe but...guess what?  He gets hit whether he does or doesn't have them.  I think, when in cycle, clusterheads are more sensitive to certain things like alcohol, msg, etc.  But it honestly doesn't matter if they don't have those things, they still get hit.  
 
I learned a long time ago not to tell my boy not to do something.  When he's in cycle, he doesn't need me yapping at him about what he's eating/drinking/smoking.  He's getting punished enough and he knows he's going to get hit, no matter what he does or doesn't do.  
 
Smoking doesn't make a difference for clusterheads - that's been reported time and time again here.  We have die-hard smokers, ex-smokers, non-smokers, they still all get hit.  Alcohol is a very common accelerator for episodics and most of them don't over-indulge while in cycle.  Food triggers really are a migraine thing though - are you sure he's not dealing with both CH and migraine, maybe?  How long do his headaches last?
 
I think a more important role for a supporter is to find ways to help him cope - urge him to get on the oxygen quicker, research any new methods for breaking cycles, get him the ice bag when you see an attack coming on, that kind of thing. But please don't keep on him about triggers.  Even if he didn't eat mayonnaise and steak sauce (?) he'd still get hit, ok?
 
One last thing - I think a commonality in clusterheads IS stubborness.  But think about that - they have to be stubborn in order to survive clusters.  If they were submissive - well then, the beast would win, wouldn't it?  Be thankful your clusterhead is a hardhead.  It's what's keeping him going.  Please let him pick his own path.
 
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Re: Feelings of anger
« Reply #19 on: Feb 21st, 2007, 1:14pm »
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    Here-Here, thumbs-up, Amen, and a high-five to you Margi.
 
 
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Re: Feelings of anger
« Reply #20 on: Feb 21st, 2007, 1:42pm »
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I quit alcohol 15 years ago  
didnt make Ch any better or any worse
Great post Mergi
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Re: Feelings of anger
« Reply #21 on: Feb 21st, 2007, 6:44pm »
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Margi, that was a great post !
 
Thanks for sharing your vast experience. I never cease to learn from you.
 
Hope all is well with you and yours.
 
Hugs
 
Annette
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Re: Feelings of anger
« Reply #22 on: Feb 21st, 2007, 6:46pm »
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Re: Feelings of anger
« Reply #23 on: Feb 21st, 2007, 7:47pm »
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Hey Marji,
 
Thanks for the input.  I get the feeling you are in the teaching field.  But, correct me if I am wrong.  I think you made a lot of blanket statements.  I wouldn't presume to make such statements to you since I don't know you at all, even if I were to read many of your posts.  So, don't presume to know what goes on in my home.   My husband had a good laugh at you email. But, whatever flips your switch.  
 
Visit me again in 20 years.  I remember how I was at the 20 year mark.  Have a great evening!
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Re: Feelings of anger
« Reply #24 on: Feb 21st, 2007, 9:06pm »
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on Feb 21st, 2007, 7:47pm, the_watcher wrote:
Hey Marji,
 
Thanks for the input.  I get the feeling you are in the teaching field.  But, correct me if I am wrong.  I think you made a lot of blanket statements.  I wouldn't presume to make such statements to you since I don't know you at all, even if I were to read many of your posts.  So, don't presume to know what goes on in my home.   My husband had a good laugh at you email. But, whatever flips your switch.  
 
Visit me again in 20 years.  I remember how I was at the 20 year mark.  Have a great evening!

 
Completely uncalled for!  Margi has been a great supporter to many on this board and has probably done more research than 10 people put together.
 
Don't be so prickly with people trying to help.
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