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Topic: Dad doesn't understand.... (Read 795 times) |
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Bond007
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Dad doesn't understand....
« on: Mar 8th, 2007, 2:37pm » |
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I know my dad means well, but enough is enough already! My GP originally thought I might have CH, so he refered me to my neurologist who confirmed the diagnosis. My father couldn't believe that I was actually afflicted with this, so at his encouraging, I went to the Mayo Clinic. My neuro @ Mayo confirmed my hometown neuro's diagnosis. I thought that would satisfy dear ole Dad.
Well, that still hasn't soothed him. His take is that something is "broken" and it CAN be fixed. Now, he's hounding me to seek out a 3rd, 4th or 5th opinion. He's telling me that I'm not being aggressive enough to find a remedy. He's wanting me to make appointments with the Cleveland Clinic, Duke University Hospital, Johns-Hopkins Med Center, etc. At his request, I went to the Mayo Clinic. Now, he's telling me that Mayo isn't all there there is for a diagnosis & cure.
Why can't he just accept it and let me try to play the hand I've been dealt? Instead, he's causing ever more stress in my life. I've got half a mind to get an appointment with Dr. Goadsby and let Dad chew on his diagnosis!!
I'm getting really pretty pissed!!!
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thebbz
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Re: Dad doesn't understand....
« Reply #1 on: Mar 8th, 2007, 2:58pm » |
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You can lead a horse to water, but you cant make him drink.  Self denial at the first diagnosis is common. Nobody wants CH. Your Dad is being normal, try to understand. Then ignore him like any other sibling would.  (just kidding)
all the best
jb
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seasonalboomer
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Re: Dad doesn't understand....
« Reply #2 on: Mar 8th, 2007, 2:59pm » |
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I was "lucky" ..... Dad has CH too so there was no confusion. 
scott
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clusterwife
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Re: Dad doesn't understand....
« Reply #3 on: Mar 8th, 2007, 3:10pm » |
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We, as parents, internalize everything about the outcomes of our children. He dreads thinking he passed this trait to you, that's all. Keep loving him, he should come around soon, you'll see. Leah.
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Brew
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Re: Dad doesn't understand....
« Reply #4 on: Mar 8th, 2007, 3:15pm » |
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No parent wants for their child to have an affliction for which there is no cure. His intentions are pure, but he is in denial about reality.
You need to have your neuro explain to him in no uncertain terms that there is no cure. There are sometimes very effective ways to treat the symptoms, but the only "cure" on the horizon is that it sometimes goes into remission for folks over 55 or so. Other than that, he needs to stop wasting his time and money, and your emotional capital.
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Bond007
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Re: Dad doesn't understand....
« Reply #5 on: Mar 8th, 2007, 4:33pm » |
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Thanks for the support gang. He's really getting to me, which only pisses me off even further that I'm allowing him to push my buttons.
When I told him that I've been dealing with this affliction since Oct. 2005, he kind of went off the deep end. Apparently, he read about CH on the Cleveland Cinic's web site and somehow he got the impression from reading that that CH doesn't last longer than one year. Now, he's convinced that I've got something else entirely. I, too, read the Cleveland Clinic's descripion of CH, and while I only disagreed with their statement that cluster headaches only occur to a maximum of 3 times a day, everything else was pretty much right on. I have no idea how he came up with this one year max idea. UGH!
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thebbz
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Re: Dad doesn't understand....
« Reply #6 on: Mar 8th, 2007, 5:28pm » |
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He may be confusing episodic with chronic which is one year without any breaks in the cluster. Just a guess on my part. You can expect him to continue until he is satified himself..you unfortunatly are the one that will satisfy him. Hell he's in all likelyhood just as worried as you are.
Stay on him. I'm sure he's worth it
all the best
jb
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daniel96
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Re: Dad doesn't understand....
« Reply #7 on: Mar 9th, 2007, 1:03am » |
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I guess maybe your dad really cares about you hoping its aint true. But nevertheless family support is important, I got alot of concern from both my parents and siblings and even my aunts.... etc. At least on the down side , I still know I exists for a simple reason... to care for those who are in need of.
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BrianJ
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Re: Dad doesn't understand....
« Reply #8 on: Mar 9th, 2007, 7:23am » |
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I can see how this would be anoying but least he is trying my family have the attatude its just a HA get over it but i dont have to live with them and my wife and kids are really great
my mother is wonderful but she gets a bit rapped up in her self from time to time so expecting her to understand was never going to happen
It sounds like your father is very careing but it is easier to want to fix your childrens problems than just helping them with it he is being a father is all
best wishes
Brian
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Gator
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Re: Dad doesn't understand....
« Reply #9 on: Mar 9th, 2007, 10:35am » |
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My old man doesn't get it either. I made the mistake of using the term Cluster Headache when I told him about it. He latched onto the word headache. Since it is a headache, there should be some pill I can take to make it go away. Why should he be any different from the millions of other people, including too damn many doctors, that don't get it? Every once in a while he'll ask if I "still have them headaches." I just say yeah and then move on to the next subject.
This is why I hate the term Cluster Headache. The word headache minimizes what we go through on a daily basis. Any more, if it comes up I tell people I have a rare neurological disorder that causes an excruciating burning/boring pain behind my right eye and temple area.
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seasonalboomer
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Re: Dad doesn't understand....
« Reply #10 on: Mar 9th, 2007, 10:41am » |
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on Mar 9th, 2007, 10:35am, Gator wrote:My old man doesn't get it either. I made the mistake of using the term Cluster Headache when I told him about it. He latched onto the word headache. Since it is a headache, there should be some pill I can take to make it go away. Why should he be any different from the millions of other people, including too damn many doctors, that don't get it? Every once in a while he'll ask if I "still have them headaches." I just say yeah and then move on to the next subject.
This is why I hate the term Cluster Headache. The word headache minimizes what we go through on a daily basis. Any more, if it comes up I tell people I have a rare neurological disorder that causes an excruciating burning/boring pain behind my right eye and temple area.
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Does that help Mike? I still see someone saying back to you, "Yeah, I had a headache like that once too....My homeopath gave me some eye of the newt and valarian root and it got rid of it right away. Maybe you should try that?"
Scott
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| « Last Edit: Mar 9th, 2007, 10:42am by seasonalboomer » |
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Gator
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Re: Dad doesn't understand....
« Reply #11 on: Mar 9th, 2007, 10:54am » |
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Scott, the few times it has come up, they just kind of gave me a thoughtful shake of the head and said something to the effect of, "Damn, that sucks." I almost always get the "I (or my sister/brother/dog) had a headache like that once" stuff when I use the term cluster headache. Unless I get the impression that the person is really willing to learn about it, I don't even pursue it.
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KillerQueen
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Re: Dad doesn't understand....
« Reply #12 on: Mar 9th, 2007, 11:17am » |
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Someone actually said to me at work yesterday "I feel like that every month when I get menstrual cramps!" Ummm...no you don't! 
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seasonalboomer
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Re: Dad doesn't understand....
« Reply #13 on: Mar 9th, 2007, 11:37am » |
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on Mar 9th, 2007, 11:17am, KillerQueen wrote:| Someone actually said to me at work yesterday "I feel like that every month when I get menstrual cramps!" Ummm...no you don't! |
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I'm glad I wasn't drinking anything when you posted this one. It would have been all over the screen.
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KillerQueen
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Re: Dad doesn't understand....
« Reply #14 on: Mar 9th, 2007, 12:10pm » |
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I'm glad I wasn't drinking anything when she SAID it...it might've been all over HER!
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Sandy_C
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Re: Dad doesn't understand....
« Reply #15 on: Mar 9th, 2007, 12:57pm » |
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I agree that your Dad is in denial that there is "no cure" for this affliction. After all, he sees fifty times a day advertisements on TV for a pill that cures anything, why not CH? (and THIS, my friends, is another thread).
I don't know if he is computer "literate" or not, but is there some way you can invite him on to this site and these boards, or the OUCH site? As you know, everyone here will do everything in our power to help you, and to help your supporters and family members understand what CH is, what it's not, and try to help find ways to manage your life with CH. I don't have a Dad to deal with, but when this first began with me, and I found this site, I gave my husband carte blance to log in at any time under my log-in, (he even has access to my PM's). He has learned what CH is and does to me, and has become my staunchest supporter.
Is your Dad at all willing to be educated about CH so that he learns what it really is, and how he can help his son? Can you take him with you to your neuro and let him ask any questions he needs to ask to understand what's happening to you?
As someone else said, no parent ever wants to hear the words "no cure", but if he can be reassured that CH is not going to kill you, and that you ARE doing everything in your power to manage it, and he learns more about it, maybe he will learn to accept it, as you have.
Wish I could make it go away for you, but I can't, so wishing you luck with your Dad and PF times.
Sandy
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Bond007
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Re: Dad doesn't understand....
« Reply #16 on: Mar 10th, 2007, 1:39pm » |
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My younger brother called me yesterday and through our conversation he did say that Dad really is worried about me. The biggest thing he's concerned about is that he has read over and over again that CH has earned the moniker "Suicide Headache". And, considering my past, he's VERY concerned that I may falter and take my own life. When looking at this whole thing from that perspective, I now understand his concern and his wish and hope that this truly is something else.
The only thing that sucks now is that I'm finding myself worrying about HIM when I'm the one with the damn CH! Oh well, such is life, eh?
Anyway, thanks again for the support!
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BarbaraD
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Re: Dad doesn't understand....
« Reply #17 on: Mar 10th, 2007, 2:23pm » |
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Funny thing -- I was going to suggest you tell him you need to go see Goalsby in London as the last word.
If there's any way BRING him to this MB. What we have is NOT life threatening, but does need a little understanding.
And be patient with dear old dad (I know - Lord grant me patience - but HURRY). Unless you've had these things you really can't understand.
And about the menstrual cramps -- I'm still laughing about that one. I've HAD menstrual cramps and a CH is NOT akin to a menstual cramp!! A stake driven thru the eyeball - maybe (close) but a menstual cramp?
Hugs BD
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TonyYZF
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Re: Dad doesn't understand....
« Reply #18 on: Mar 12th, 2007, 12:56pm » |
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I think it is more like a menstral shotgun blast to the head.
I have found that a combination of the OUCH "Cluster Headache Syndrome" letter and watching the Chuck Attack video has gone a very long way for helping people see a little more clearly what is difficult to communicate to them verbally.
Thank you Chuck for your contribution to helping others understand.
I have found that the OUCH letter is concise enough for most peoples attention spans and it conveys most of the significant points to friends family and co-workers.
Best wishes
Tony
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BarbaraD
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Re: Dad doesn't understand....
« Reply #19 on: Mar 12th, 2007, 1:28pm » |
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The bad part about CH is that people can see you going thru a hit and still not understand the pain you're going thru.
When I was growing up, my dad had migraines - then later my son had migraines, but I didn't understand what they were going thru. Heck it's a headache -- take something and get over it - right? I'd had a few sinus headaches and that's what I did -- how dare them think they hurt worse than me.
so ..... when I came down with CH - (thought it was a brain tumor for a while) - guess what == you got it -- Mom why don't you take something and get over it? In hinesite I wish I'd been a little more understanding when they were hurting cause I'm getting about the same treatment I gave to them.
But the sad fact is that unless someone has CH - they really don't understand the pain that goes with it.
Hugs BD
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clusterwife
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Re: Dad doesn't understand....
« Reply #20 on: Mar 13th, 2007, 10:14am » |
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Very well said Barbara!
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ClusterChuck
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Re: Dad doesn't understand....
« Reply #21 on: Mar 13th, 2007, 10:55am » |
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Sorry you have to go thru this.
on Mar 8th, 2007, 4:33pm, Bond007 wrote:| Apparently, he read about CH on the Cleveland Cinic's web site and somehow he got the impression from reading that that CH doesn't last longer than one year. |
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Let him know I have had them for 28 years now. Others have had them longer.
on Mar 8th, 2007, 4:33pm, Bond007 wrote:| I only disagreed with their statement that cluster headaches only occur to a maximum of 3 times a day |
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Hmmm I wonder, what I had on that day I hit my new max, for one day ... 19 hits in one 24 hour period. I am chronic, and get hit between 8 and 12 times a day. I actually had one doctor tell me (within the last year) that I don't have clusters, because:
1 - I am 57 years old, and I still have them (sorry BrewCrew, they didn't stop when I hit 55)
2 - None of the preventatives work for me anymore.
3 - I get hit more than three times a day.
4 - They are at random times, and not at the same time every day.
Ain't it GREAT?? ?? I DON'T have clusters!!! WOOHOO!!!
Anyhow, if you can't get him to come to the site, maybe you can print some things out for him, and have him read them?
BUT, If he refuses, just start to ignore his nagging. Love him, and when he is bugging you to do something, just say "ok, Dad" and then go on about life. He DOES love you. But sometimes we have to choose to love, but ignore our family members' advice.
Keep your chin up!
Chuck
Edited, cuz I didn't have my glasses on, and couldn't tell the difference between Gator and BrewCrew ...
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| « Last Edit: Mar 13th, 2007, 10:45pm by ClusterChuck » |
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ClusterChuck
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Re: Dad doesn't understand....
« Reply #22 on: Mar 13th, 2007, 10:58am » |
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on Mar 12th, 2007, 12:56pm, TonyYZF wrote:| Thank you Chuck for your contribution to helping others understand. |
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You are VERY welcome!
I am just glad that it is helping to make this more realistic to some people!
But, anyhow, I just happened to be there. Justin is the one that caught it on tape, and allowed it to be so widely available!
Thank you, Justin!
Chuck
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TonyYZF
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Re: Dad doesn't understand....
« Reply #23 on: Mar 13th, 2007, 11:44am » |
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Chuck,
I should have thanked Justin too...Thank you Justin. But, you are modest. I have an easy time talking about CH with friends, family and co-workers, but an incredibly difficult time dealing with people actually seeing me have a hit. There are lots of reasons why it bothers me, but I applaud your courage to put yourself out there for the education of others and in turn your support to fellow unfortunates like myself.
That reminds me. I would like to thank you in person sometime when I get back from Bahrain. I live in Elizabeth City now, which I believe is in your vicinity, but will not be in the area much longer as I have orders to Oklahoma.
Sorry to tag this unrelated stuff onto the post.
Best wishes to everyone
Tony
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ClusterChuck
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Re: Dad doesn't understand....
« Reply #24 on: Mar 13th, 2007, 12:52pm » |
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Tony, with my family and friends, I run and hide, when I get hit. Only my wife and two of my four children (all four are adults, now) have seen me in a full hit. ALL of them know to back off, and leave Dad alone when he is getting hit. And they KNOW better than EVER touching me when getting hit. As much as I love them, I would rip them to shreds, if they were foolish enough to touch me.
Yet, for some reason, I have no problem with a fellow clusterhead being around or even touching me, or as you see Luke actually holding me and keeping me from my normal hair pulling and head banging. Several clusterheads have held or in someway touched me while I am dealing with the beast. I have been to several conventions and local gatherings, and I am totally at ease getting hit in front of them. I still prefer to go off by myself, but if I can't, no big deal. It blows my mind (what is left of it).
And, I am not alone in this. Many have said the same thing. It is that wonderful, amazing bond we share.
Check your PM's, as I have sent you my cell phone number, for when you get back "in town" ...
Chuck
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