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-

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).

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

Thanks Guys.  I'll be setting that appointment up.

-Dennis-

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.

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

sending vibes over there for both of you.

Sorry Dennis.   Lucky he has a GREAT Dad to help him through though.   

Hugs,

Jeannie

Dennis, did your son get into see the neuro?  How is he doing?

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-

But you can have an O2 tank at ready.............

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!

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.

Brew, thanks for the positive insight.  I try not to think about it, but it's always in the back of my mind.

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.

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.

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!

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

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-

Oh that so sucks Dennis.

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-

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-

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  [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

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.

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-

Well crap  :(

That's too bad that he didn't get to see your neuro.  Some docs are just complete and total A-holes (don't we all know that).  I don't get given the history why they would go that route of treatment first.  So they don't want him to use the O2 so he can "experiment" with this beta blocker.  What kind of doc wants the patient to suffer? 

I can't believe that they never called in the script.  WTH is that all about???  Is there anyway that you or your son can get in phone contact with your neuro to get this straighten out?

This just really sucks, I can understand how this would leave him confussed.

this makes me so sad to read.

I really hope you can get him into another doc and get on a path to find the right solution for him... can you get your GP to order a hormone blood test...since it has helped you perhaps it may also help your offspring.

Geez..i hope he gets a doc that understands soon.

The MRI is a good first step to rule out the nasties...but you know what you are looking at..

so sorry to hear.

Paul

Dennis my heart goes out to you...

Sucks indeed, You have EXPERIENCE , once properly diagnosed, you can be of great help.

Good luck and keep us posted, he's built of stout stuff I'm sure, we've all had to deal with it, and with your help, he will too.

I've just come upon this post and wish you all well, I fear for my own children as well regardless of the genetic predisposition or lack thereof....

Baer

Oh jeez, and I can just imagine his wife probably feels like crap for it.....I sure hope he gets the help he needs and I am so glad he has you to look to....I know that means alot to him

Dennis...my heart breaks for you as I read this.  It is scarey for me too.  My CHer doesn't even know how to help himself let alone guide any of his sons through it.  This has been a fear of mine as well.  We have three sons; grown; 23, 24, & 26.  The 23 yr old had horrific childhood migraines! He learned what signs to look for and most of the time was able to abort them before he was knocked out for the day. As he has been slowly outgrowing them, gets a few during changes in weather sometimes. He asked me if there was a chance for him to get what his dad has.  I was honest at the time and told him I didn't know.  What I DO know, is that our sons talk with mom a lot!! :) And I would let them know everything I have learned so far, & get them a support group like you all! I will be praying for you and your family Dennis.  Hope by now, if nothing else, the beast has been corralled and under control.  God Bless!

I just realize I never circled back on this thread. Sorry for waiting so long to do so.

His MRI found nothing, which is as close to a confirmation of CH as we can get.  He went back on Monday and got everything straightened out and eventually found a prevent that is working well enough for him.  His first cycle ended and he has since suffered through a 2nd, though with much better results this time.

-Dennis-

I said it before Dennis, if you have to have CH, what a blessing to have an old man who has already blazed the trail for you. [smiley=hug.gif]

Joe

Hoping he'll get a very very long pain free period. I'm putting in an order for one lasting... let's say 60 years?

:S