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   Author  Topic: Feelings of anger  (Read 2313 times)
the_watcher
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Re: Feelings of anger
« Reply #25 on: Feb 21st, 2007, 10:11pm »
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You want to help; ask me questions. Don't make assumptions.  I know we all live on the edge, but really.  I don't live with you and vice versa, so don't make the mistake of thinking all sufferers are the same and all supporters are the same.  It's the nature of the beast to come at everyone with it's on personal little twist; or the sufferers reactions to it.  What I am saying is we are all individuals; have the decency to respect that.
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Re: Feelings of anger
« Reply #26 on: Feb 22nd, 2007, 9:57am »
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Whoa - I certainly didn't mean to upset you and I do apologize if I have.  
 
No, I'm not in the teaching field but I used to work on the Family Services Team here and have talked to hundreds of supporters over the years, most often off the board.  Quite often, we see supporters hitting the wall and making incorrect assumptions as to what's causing their sufferers' attacks.  That's what I saw in your posts and all I did was try to steer you in the right direction.  
 
I honestly was only trying to help.  Not to worry though - I won't bother you anymore with any of my drivel.  Undecided
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Re: Feelings of anger
« Reply #27 on: Feb 22nd, 2007, 12:30pm »
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Ladies please.... We are simply trying to help one another right? I made a reply which was to long according to the system, and am at it once more.
 
I have quoted both of you in blue out of context for length concerns.
 
 
The ONLY known trigger for cluster is nitro-glycerine and it will trigger an attack for a clusterhead even when out of cycle.  To be a true trigger, that's the qualifier - if it will launch an attack when out of cycle. I didn't know that.
 
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.  
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!

 
The only one that I can't do is the alcohol. I am not fond of deli meat, though. My wife bakes freash breads all the time, cookies too.
 
I use taco sauce and BBq sauce as it there won't be any next week..  
 
Alcohol is a very common accelerator for episodics and most of them don't over-indulge while in cycle.
Oh yes indeedy this is a problem I have!
 
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?
 
My CH's go about 1 hour, and I might have 2 on a rare occasion. I am left for hours after with a shadow.
 
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.
 
I know all there is about being STUBORN. I rode a motorbike one and a half times the distance of the USA with broken ribs recently. I don't like quiting much.
 
I got laffed at here in 04 before I left, and that's fine by me. I am at WAR with these Ch's.
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Re: Feelings of anger
« Reply #28 on: Feb 22nd, 2007, 12:40pm »
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Watcher, I think you husband has more going on than just CH's.
 
I hear peanut butter isn't good for the CH, but it has no ill effects on me what so ever. The one killer for me is any amount of alcohol.
 
The intent is to find other triggers that work on me and will cause a CH... Pretty odd huh? Not many want to try other things that get the other poor victims, but it is my way of fighting back. I guess it comes under Know Thy Enemy, and use it against it.
 
What does work for me is oxygen right out of the welding bottle I use for cutting and gas welding. I remove the working head, and turn up the pressure to apx 15 psi, and breath in holding the gas a bit, and then exhale slowly, for 30 minutes, which is a royal nusiance, but better than the CH.
 
The problem is my bottle is industrial size and so I can't just lug it around.
 
The next best thing is imitrex injectors customized for a 2 mg's dose.
 
Both of these methods abort the pain, and thats about it. I understand what works today may not work at another time too.
 
If you like you can tell me where hubby is and I will come over and bite him on the ankel or something  laugh
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Re: Feelings of anger
« Reply #29 on: Feb 22nd, 2007, 2:44pm »
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I just want to share my personal experience that I have here, as a supporter.
 
I am a GP and I have been doing heaps of researches on CH but when it comes to practical experience with being a supporter for CH, I know that I only have the perspective of one. The only CHer that I know well is my husband.
 
Margi, and many others here on the other hand, have listened to and spoken to literally hundreds of CHers and supporters through the years, from all over the walks of life. Many face to face, most over the phones or emails. Therefore they would have heard and got to know a much larger sample of people, of incidences, etc. Their repertoire of experience hence is much much more than mine and I respect them for that.
 
Margi is a wonderful lady and helpful beyond imagination. I owe my sanity to her. Whenever I was in doubt, was hurting, was confused or just lost the strength to carry on, she was there. Many times she came to my aid even when I wasnt asking her directly. She would read my posts here, noticed my fear and my pain, and would drop me a PM or an email asking me if I was OK and offered a shoulder to cry on.
 
Whenever I have emailed her for help, she would answer immediately, even when she was busy with her own life, or when someone in her own family was ill. She was never too busy to help. She never laughed at my questions, never once doubted my story ... she was just always there, ready to listen, ready to offer  advices to the best of her ability. I have always felt that her love and concern and care are so genuine, even at half the world away.
 
Yes, she doesnt live in my household and yes, each CHer and each supporter are different, but I have always found her advices to be spot on. If I ever found something she suggested too difficult to implement or not quite workable in our situation, I would file that aside as knowledge, and with CH, knowledge means a lot, and so I still appreciate her none the less.
 
Even in the unlikely event that what she says to me is not what I want to hear, I still appreciate the fact that all she is doing is trying to help me. Its the thought that counts and I truly appreciate anyone who would spare the time to first read my posts and secondly spending the time typing a supportive reply.  
 
The reason we come here firstly is to seek knowledge and to seek support, in order to better cope with this horrible ailment. So if and when knowledge and support  is offered, no matter in what shape or form, we should humbly accept and appreciate, or else we will soon become an island.
 
I am sure that all of us who have come here have found support and knowledge and have come out better for it. We should learn to be thankful to the people who are here day in day out offering all that for free. They do it all our of love. Where else can you find such love from a total stranger?
 
CH and being on your own, is the fast track to hell!
 
Just my 2 cents.
 
Annette
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Re: Feelings of anger
« Reply #30 on: Feb 22nd, 2007, 3:05pm »
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LOL holy crap, Annette!   Shocked  How much do I owe you for that post??  Seriously, thanks my friend.
 
You're one to talk, missy - folks, Annette is an awesome gal.  Our little granddaughter has recently faced a life threatening condition and an ensuing 8 hour surgery.  I freaked when we got the diagnosis and Annette was right there giving me free medical advice and making me feel so much more calm about the whole ordeal.  I still have all your emails, Annette, about Savannah's tumour and you were bang on in all the advice you gave me.  "Thank you" will never be enough for what you did for me and for my whole family.  I read all your emails to my daughter and you honestly did answer all her questions and made her be able to face everything with a lot more strength and confidence.  And, just this morning, Savannah was at our house, worrying if her hair looked ok before she went off to "work" (dayhome).  It's like the surgery never happened and now she's all "image conscious", now that she has this new skinny belly!  LOL
 
Once again, Watcher, I do apologize for perceived assumptions.  It's really not that at all, ok?  Having met a few clusterfolk in person it honestly IS startling to see all the commonalities in this group.  It's like we're all from a different planet but can still pick each other out in a crowd of aliens.  So, you see - it kind of IS safe to make general assumptions in an effort to help each other.  It's what we do here.
« Last Edit: Feb 22nd, 2007, 3:08pm by Margi » IP Logged

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Re: Feelings of anger
« Reply #31 on: Feb 22nd, 2007, 3:25pm »
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hey watchie,
 
(and Margi you can chase me out of the supporter area as soon as I finish)
 
Sorry to hear your husband is going through a bad time. Every cluster head understands your husband. Every cluster supporter understands you. I'm cut from the cloth, as a sufferer, that knows the things that will trigger (and thank god I haven't developed as long a list as you guys have) but still, occasionally partake in those thigns that will trigger.
 
Why? Because I also have "feelings of anger". I'm pissed at these things. They're indiscriminate and for me they've chosen to come on, it seems, at the wrong times and as a result of things that I often enjoy as part of my life. So, I choose to raise my middle finger sometimes and direct it at the beast. My biggest trigger is actually something that isn't bad for me. When I'm in cycle, if I  go running, which is a passion of mine, I get hit within 15 minutes of finishing.  
 
So it goes. I'm not going to stop running because of these things. Running is sanity for me. Headaches, because of O2 and Imitrex can be overcome and fight I will.  
 
Beer is another trigger, and yes I'll often skip drinking when in cycle, but there are times when those special events that amke up the richness of my life, with friends and love, that we raise a glass, and I do to. To hell with CH! And to hell with the outcome. I own the outcome, it's mine to endure and overcome.
 
So, you see, feelings of anger surround this condition. As a sufferer I get that.
 
Scott
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Re: Feelings of anger
« Reply #32 on: Feb 22nd, 2007, 3:42pm »
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too right, Scott - well said.  For my Mike, it's the same thing.  Having a beer while in cycle is usually a no-no for him as well but, sometimes he just does it anyway.  I think, more than anything, to feel normal - because cluster is anything BUT normal and that, in itself, is maddening!
 
I ain't gonna kick you out, Scottie (don't you hate it when people call you that?) - you've earned your stripes. You can stay.  Wink
 
Modified to add:  supporters do feel our own brand of anger too.  Especially when we see our sufferers doing stuff that we know will accellerate attacks.  Watcher, I hope you realize that I intimately know what you're talking about here.  For us, it's like watching our baby purposely run out onto the railroad tracks when we think we're the only one that can see the lights from the oncoming train.  It's a panicky, frustrating feeling.  But, unlike that train, cluster won't kill anyone.  
 
I just wanted you to know that I didn't miss your point, not at all.  My main point was that the "triggers" you're mentioning probably aren't CH triggers at all (except maybe for any alcohol but you did say your hubby doesn't drink while in cycle).  The things you mention are migraine triggers and they really are two different beasts - both vicious and hideous but still different.  But, for what it's worth - smoking doesn't seem to make a difference for either type of headache.  
 
ok, I'll shut up now.
« Last Edit: Feb 22nd, 2007, 3:49pm by Margi » IP Logged

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Re: Feelings of anger
« Reply #33 on: Feb 22nd, 2007, 4:21pm »
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on Feb 22nd, 2007, 3:42pm, Margi wrote:
 For us, it's like watching our baby purposely run out onto the railroad tracks when we think we're the only one that can see the lights from the oncoming train.  
 
ok, I'll shut up now.

 
 
No wonder while in cycle Daniel would wake up in the morning telling me that he felt like a freight train had hit him ! He must have run out to the tracks during the night while I was sleeping and not able to stop him!  Tongue
 
And please Margi, dont ever shut up because I wont either  Kiss
 
Watcher, we DO know how you feel. We have walked to the railroad tracks many times picking up the pieces, just like you have and we have been through the rollercoaster of emotions that is inevitable for a CH supporter but most important of all, we DO love you and CARE for you, genuinely.
 
Hugs to all.
 
Annette  
 
Duh, thats gonna be a FEW hugs, me poor arms ...  Wink  Grin
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Re: Feelings of anger
« Reply #34 on: Feb 22nd, 2007, 6:30pm »
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Marji,
 
Thanks for the apology; I sincerely do appreciate that.  I owe you one too.
 
Please allow me to clarify some things.  It's my job to listen carefully so maybe I read too many things or take things too literally.  
 
Honestly, not meaning to sound hostile, but I do know the difference between clusters and migraines.  I have migraines, my husband has never had a migraine.  Whether we mean true trigger or accelerator, the end result is a headache and he knows what's going to nail him. I too have read so much about clusters and I don't think anyone or any study has the definitive answer or we would have a lot of people feeling a lot better.
 
Also, I don't harangue my husband about anything; it doesn't work.  If he chooses not to try certain meds, oxygen, or whatever, hey I realized a long time ago I can't make him.  I have 40 years at this and maybe I wasn't being clear about then and now.  He hasn't been to the neuro in 3 years and hates to go.  The doctor won't refill any meds just to get him to come in.  My husband will only do verapamil so he won't have to go in.  I can't fix that.  Just thought I would get rid of 40 yrs of frustration.  
 
One good thing, he has actually finally spent some time on the board and did thank me for being a supporter last night after reading a lot of posts.  Don't get me wrong he loves me; I love him. He's just a he-man that finds it hard to say thanks and sorry.  
 
Anyway,  I'm sorry about the misunderstanding.
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Re: Feelings of anger
« Reply #35 on: Feb 22nd, 2007, 11:06pm »
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Just above Margi said:
 
    Quote:
ok, I'll shut up now.

 
 
 and to that I have to say to you Margooo:
 
    You do,  and I will never... ever.... in a thousand years,  ever speak to you again.
 
you were right on.  
 
   Luinda
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Re: Feelings of anger
« Reply #36 on: Feb 23rd, 2007, 10:00am »
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Yes, ma'am Luinda.   Kiss
 
Watcher, my hat is off to you for doing this for 40 years.  You're a strong lady.  Just to be clear, I wasn't insinuating that you don't know the difference between cluster and migraine - a high majority of supporters are actually migrainers, too (myself included).  Maybe we're attracted to clusterheads because they give off familiar headache phermones or something?  Smiley  
 
Sounds to me like your hubby is very similar to mine in his allergy to doctors.  Such is life and we do what we gotta do, right?
 
I hope your hubby's cycle ends soon, Watcher.
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