Click this link to read a post I like on the clusterheadaches.com message board...

Apr 25^th, 2024 at 2:56am

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Supporter's Corner › Children and Cluster's › The day I’ve been dreading is finally here

(Moderators: Margi, Mrs Deej, DJ)

‹ Previous Topic | Next Topic ›

Pages: 1 2

The day I’ve been dreading is finally here (Read 9446 times)

DennisM1045

CH.com Alumnus

Offline

One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
Gender: male

The day I’ve been dreading is finally here
Sep 10^th, 2009 at 3:37pm

Earlier this afternoon I got a txt from one of my older boys. He’s gonna be 28 this month.

“Dad, what are your headaches like and where in your head do you feel the pain?”

Two txt messages later I called him and we talked. He said he almost dropped the phone when he read my response. From what I can tell he is experiencing quick hitters that only last a half hour to 45 minutes and peak at K3. Says he’s had a “handful” in the last two week. This last attack was painful enough that it really got his attention. That’s when he decided to call.

This is the same time of year when one of my two annual cycles starts. They completely mirror my symptoms. He’s a right-sider just like his Dad and his Grandfather (my dad) before him. At least I know he won’t suffer like I did looking for a diagnosis through a sea of pain. It was 12 years from the time I started looking for answers.

The first thing I’m advising him to do is to keep a headache diary. If thing don’t die down quickly I’ll get him in to see my Neuro.

It kills me to think of my kids going through this pain. He’s my oldest Son. Are they all gonna get it? F-ing beast!

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

IP Logged

Click Here to visit the CH.com Facebook page!

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: The day I’ve been dreading is finally here Reply #1 - Sep 10^th, 2009 at 4:10pm No, the first thing he should do is get in to see a neurologist. Sux, fer shure. But you've been beyond the black stump with this, Dad. Support him emotionally, and give him sound advice (which I know you will).
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Marc

Ex Member

Gender:

Re: The day I’ve been dreading is finally here
Reply #2 - Sep 10^th, 2009 at 5:51pm

I watched the same thing happen with my Brother and his (then) 23 year Son. I think my Brother took it worse than his Son. Don't fall into that trap!

After his first hit, my Nephew looked at his Dad and said "I had NO fucking idea what you were going through, even seeing you suffer."

Focus on helping him with your tremendous wealth of knowledge and experience. Realize that YOUR SON will never have to go through that "lost and alone" series of emotions. Teach him how to kick it in the butt.

Marc

IP Logged

DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: The day I’ve been dreading is finally here Reply #3 - Sep 11^th, 2009 at 8:31am Thanks Guys. I'll be setting that appointment up. -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: The day I’ve been dreading is finally here Reply #4 - Sep 12^th, 2009 at 9:23am Oh Man, so sorry Dennis. But so happy for one thing - that he's your son - he recognized what it was, and sought out immediate help. Unlike many other people that will suffer through many cycles before getting the help he needs, he can get through this first one! God bless you both.
Back to top	Treat people with kind words. IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: The day I’ve been dreading is finally here Reply #5 - Sep 16^th, 2009 at 4:02am Love ya Dennis. Know what your feeling, know as well as you it's not logical to think it......still bites. Good thing you've already paved the road for him. Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: The day I’ve been dreading is finally here Reply #6 - Sep 16^th, 2009 at 4:13am sending vibes over there for both of you.
Back to top	Oh come on!it's just water.It can't be that bad! IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: The day I’ve been dreading is finally here Reply #7 - Sep 23^rd, 2009 at 2:13pm Sorry Dennis. Lucky he has a GREAT Dad to help him through though. Hugs, Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: The day I’ve been dreading is finally here Reply #8 - Nov 28^th, 2009 at 7:34pm Dennis, did your son get into see the neuro? How is he doing?
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

Click Here to visit the CH.com Facebook page!

DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: The day I’ve been dreading is finally here Reply #9 - Nov 28^th, 2009 at 7:41pm No. He's burying his head in the sand so to speak. I'm sure when the pain gets bad enough he'll take action. You can't make a 27 y/o do what you want even though you know it's the right thing in the long run. Some lessons we have to learn for ourselves -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Marc Ex Member Gender:	Re: The day I’ve been dreading is finally here Reply #10 - Nov 29^th, 2009 at 7:09pm But you can have an O2 tank at ready.............
Back to top	IP Logged

Chad

CH.com Hall of Famer

Offline

Posts: 738
Emmaus, PA
Gender: male

Re: The day I’ve been dreading is finally here
Reply #11 - Dec 1^st, 2009 at 3:05pm

God, this kind of thing scares me. I have two young boys myself and I can only pray that they don't inherit dads CH.
Dennis, with the positive feedback from this thread, your boy can become knowledgeable very quick with your insight and folks on this board. Get him to that doctor and keep the positive thoughts. As bad as this sounds, It sure does help when dad knows what he is going through.

Best of luck and wishing PF days to you and your son!

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: The day I’ve been dreading is finally here
Reply #12 - Dec 2^nd, 2009 at 11:01pm

Chad wrote on Dec 1^st, 2009 at 3:05pm:

God, this kind of thing scares me. I have two young boys myself and I can only pray that they don't inherit dads CH.

Chances are extremely good that they won't.

Quote:

Get him to that doctor and keep the positive thoughts.

It's pretty difficult to get a 28-year-old man to do something he's not ready to do.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: The day I’ve been dreading is finally here Reply #13 - Dec 3^rd, 2009 at 8:21am Brew, thanks for the positive insight. I try not to think about it, but it's always in the back of my mind.
Back to top	When the PAIN starts, I FIGHT back! Rivea Corymbosa seeds were my KO punch, now D3 is the front runner! IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: The day I’ve been dreading is finally here Reply #14 - Dec 3^rd, 2009 at 11:44am I think the last I heard, a child was something like 1.4% more likely to get CH than if neither parent had CH. That's just a tiny bit more than even odds.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Mosaicwench

CH.com Sponsor

Offline

www.mosaicwench.com

Posts: 3507
Near Milwaukee WI, USA
Gender: female

Re: The day I’ve been dreading is finally here
Reply #15 - Feb 1^st, 2010 at 5:34pm

Brew and I have watched our son closely for signs of CH over his 18 years. Nada, so far.

We take comfort in the fact that if he DOES develop them, he'll know what they are right away and know how to treat them. Being an excellent supporter of his dad, he's pretty tuned in to what should be done.

Good luck Dennis.

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert

http://www.facebook.com/home.php?id=1240423960&ref

IP Logged

bradish CH.com Junior Offline Posts: 33 Florida Gender:	Re: The day I’ve been dreading is finally here Reply #16 - Oct 4^th, 2010 at 10:42pm I have CH and pray that my two young boys don't inherit this. Its horrible and so glad I found this site for support. It gets me when people compare these to migraines. Its not worth the battle anymore to try to explain it to them. I have never met another cluster head. Glad to have you all!
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Sandy

CH.com Newbie

Offline

I Love CH.com!

Posts: 12

Re: The day I’ve been dreading is finally here
Reply #17 - Oct 6^th, 2010 at 11:32pm

This topic has crossed my mind too. My hubby suffers. We have 2 sons, 14 and 12. I only found you guys, this week.....after 9 years of BS diagnosis. (Like finding the pot of gold at the end of a very gloomy rainbow!)
I DO know, that if we'd had this wealth of info, 9 years ago, it could have made a world of difference. (Red Bull, and melatonin!....Who knew!?!?....lol)
So Dennis, your son is ahead of the game, on this one. Let him know that we are here for him also. I wish you both the best of luck!!!

Sandy

<b>You're only given a little spark of madness. You mustn't lose it. ~Robin Williams<b/>

IP Logged

DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: The day I’ve been dreading is finally here Reply #18 - Jul 9^th, 2011 at 9:33pm Well, son #2 came to me today to talk about these headaches he's having. Worst pain in his life. I had him take the cluster qiz.12 out of 16 consistent with clusters. Son #1 hasn't had anymore attacks since that initial episode. How is this possible? -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: The day I’ve been dreading is finally here Reply #19 - Jul 13^th, 2011 at 10:53pm Oh that so sucks Dennis.
Back to top	Treat people with kind words. IP Logged

DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: The day I’ve been dreading is finally here Reply #20 - Jul 14^th, 2011 at 4:07pm Yes indeed it does. He is going to my Neuro on Tuesday. I'm bringing some O2 by his house tonight. It seems to be getting worse for him so he's becoming more open to advice. Last night was his first ER visit. He learned how little that helps. -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

DennisM1045

CH.com Alumnus

Offline

One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
Gender: male

Re: The day I’ve been dreading is finally here
Reply #21 - Jul 14^th, 2011 at 9:36pm

I just can't seem to explain how I feel right now. I've been writing this post for about half an hour. The closest I can come is that this just hurts in a way that nothing else has. Not necessarily worse that some of the crap we've been through but just different. Doesn't really do it justice but there is no other way to describe it. My chest is tight. I have a shadow (haven't had one since the last time I missed an application of T-gel), must be sympathy pain. I've heard that's common.

Every symptom, every feeling, every fear he described is so damn familiar. The speed with which it sets in (slower for us than most). How exquisite the pain is. Where the pain is (he's a left sider I'm a righty). Can't sit still. Have to pace. Ice helps ... sometimes. How fast it leaves after an hour or so of torture. How "high" you feel when it's finally gone. How you think to your self "I must be a wimp!" ... until it returns.

This isn't the kind of legacy I envisioned passing down to my kids. Congratulations Son. You're title is now CH the 3rd. My Dad to me, now me to him. This just isn't supposed to happen. Right? That's what the research says. Right? WTF?

Insurance won't lelt his GP order an MRI. At least I know he'll be in good hands on Tuesday. Dr Shoeck is a good guy.

Tonight he is starting a headache diary, has two e-tanks, my regulator and mask and I gave him a lesson on how to use it. We'll know soon enough how it works for him. We went over caffeine and tauriene and what to do if you get a repeat attack. I've also encouraged him to check the site out.

God this sucks...

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

IP Logged

flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: The day I’ve been dreading is finally here Reply #22 - Jul 15^th, 2011 at 12:02am Oh Dennis my heart just aches for you I don't know what else to say except that at least they hopefully won't have to go through all the misdiagnosis that so many others have. You've walked the walk and you are going to be their biggest supporter. Great big hug to you and to your boys
Back to top	Only one life.....only one chance to make the moment count for something - Racer1_NC IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: The day I’ve been dreading is finally here Reply #23 - Jul 15^th, 2011 at 1:19am DennisM1045 wrote on Jul 14^th, 2011 at 9:36pm: this sucks... I totally 100% agree with you. However he can benefit hugely from your experience, knowing what might work, what to try, how to do things, what to avoid and so much more. And do point him towards this forum.
Back to top	IP Logged

DennisM1045

CH.com Alumnus

Offline

One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
Gender: male

Re: The day I’ve been dreading is finally here
Reply #24 - Jul 17^th, 2011 at 8:38pm

I'm so frustrated. His well meaning wife pushed to get his Tuesday appt moved up to Friday. She can't stand seeing him suffer. Unfortunately he didn't get to see my Neuro. Instead he saw some intern.

The idiot sent him home with a beta blocker to treat Trigemenal Nuralgia and orders NOT to touch Oxygen. Seems the Dr doesn't want to contaminate the BB results by having him use Oxygen. "If you use Oxygen we won't know if you are still getting attacks" This stupid SOB sent him home with only half a treatment plan!!! Is he supposed to suffer through daily attacks for the next two weeks so you can check off an item on your list? WFT?

The script never got called in and they promissed to "work with the insurance company to get an MRI scheduled".

Now I'm left with a very confused kid who is getting his ass kicked riding this thing bareback. The poor bastard doesn't know who to listen to.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

IP Logged

Pages: 1 2

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!