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Supporter's Corner >> Children and Cluster's >> Another Nite of the OW OW OWs
(Message started by: Camerooskis_Mom on Oct 23rd, 2003, 10:23am)

Title: Another Nite of the OW OW OWs
Post by Camerooskis_Mom on Oct 23rd, 2003, 10:23am
Camie (who has been HA free since 8/24) has started up again...the attacks are not his usual "9s" that he rates (he says they are 7s).  We went through another nite of listening to him crying "OW OW OW" over & over.

As a helpless parent, each "OW" rips a new wound on top of the scars of the previous evening's OW.  O2 is helping, Bextra & Todol are helping with the aches of not getting any sleep.  

Getting him to put the mask on is a battle in itself.  I have not been able to get him to tell me why he doesn't want to put it on.  When I force the issue, it helps - he relaxes and is happy he has it.  It is so verrrrry frustrating.  It is also very stressing to have to "strong arm" him to use the O2 during an attack when he is already in full blown pain & my panic is rising.  I haven't slept this week and my emotions are running amok.

I'm looking forward to the cold weather so I can take him outside again & rock with him on the back porch w/ the ice packs - that at least soothed us both and helped alot.  It's hard to imagine, me a southern gal wishing this frozen northern land I moved to would get over the Indian Summer and plunge us in to the long dark days of winter.

Why doesn't he want to use the O2??

Title: Re: Another Nite of the OW OW OWs
Post by Margi on Oct 23rd, 2003, 11:21am
Hi Mom,  (what IS your name, btw? :))

Could it be that the strap on the mask is driving him nuts?  I know my hubby can't stand it - he just holds the mask to his face because he finds it just too confining if he puts that strap on.  He finds that the slow, methodical breathing really helps him too - and having his hand there instead of just the mask hanging there seems to help him focus on doing that.  You know that the cluster pain is quite often centered in the face - the sinuses.  Having something like the edge of the O2 mask pushing on that might just be too much for you son.  

Maybe, can you have a talk with him about this when his head isn't hurting?  Explain to him that he may be able to completely AVOID the pain if he starts breathing that oxygen at the FIRST indication that he's going to have an attack?  Like an asthma puffer - maybe use that comparison?  

Best of luck to you and so sorry to hear that his pain freedom is a thing of the past again.


Title: Re: Another Nite of the OW OW OWs
Post by Camerooskis_Mom on Oct 24th, 2003, 8:55am

I thought of that too.  I have tried to hold the mask in place.  I've tried to hold the mask w/in 2" of face.  He is just outright refusing.  He says it makes him cough (although, I've yet to witness this).  

Like I said, I have to force the O2 onto him and then he gets the relief.  He states he understands that the O2 helps and is grateful when the pain subsides that he has it.  Who knows--maybe he has a phobia of putting a mask on.  Maybe I should get an Oxygen tent--do they still make those?

Any thoughts?

Title: Re: Another Nite of the OW OW OWs
Post by Margi on Oct 24th, 2003, 10:42am
Well, the coughing actually COULD be a real issue for him - whether he's actually coughing or just feeling the urge to do so.  My husband coughs like crazy as an attack is coming on.  (In my little pea brain, I would think that coughing would make his pain worse but he says he can't help himself.  He stuffs up so bad as an attack hits him that he feels that he can't breathe so he coughs to clear his airway)  I think this is a common problem, actually - I believe there was even a "poll" done here years ago about this.  
So Cam could be feeling that by breathing deeper, he will make the urge to cough worse, maybe.  So, yeah - this could be a natural defense for him - he's doing the math and blaming the oxygen for his urge to cough.
Maybe if you explain this to him and tell him that he doesn't have to breathe the O2 in deep enough that it will trigger a cough, just that it's SO important that he gets it into himself at ANY speed so he can abort the attack.  Tell him to breathe normally - through his nose shouldn't make him want to cough.  Breathing the O2 through his mouth would, though.
Hope this helps - I guess it's times like these that we, as moms, do have to take a stand and force the issue because we do know it's best for them in the long run.

Title: Re: Another Nite of the OW OW OWs
Post by Donna on Oct 24th, 2003, 12:38pm
Boy, this is a tough one.

I and my son John, could nor can stand anything colder than room temp air going into that hurting side of our noses.  I used to cover my head and breath warm air through my mouth.  Cold made me feel like my head was a melon about to burst through my eye.

Could this be a problem......the temp?

Or maybe if you hand him the mask and tell him he can hold it himself?  You've probably tried that already.

Just wish I could help.......sorry mom.

Bextra is an NSAID.......just curious why he takes it.  Hopefully not for too long.  It can have some pretty nasty side effects.  

Title: Re: Another Nite of the OW OW OWs
Post by Camerooskis_Mom on Nov 4th, 2003, 9:03am
Camie is now showing very two, very distinct types of headaches which is very good news indeed - getting easier to recognize and treat.

Now he is starting to spread into the daytime (during school) headaches--he is putting them at an 8.

Good news, he is taking the O2.  He is swallowing the pills (albeit w/ a firm hand).  

I feel like a walking pharmacy - I've given up my purse & started carrying a backpack.  I bought a PDA just to track the attacks, meds, results, etc...  The school is finally responding and working w/ me - giving him water & ice pack showing him the face chart & having him pick one before just calling me to pick him up.  With the school thing happening, I am considering putting the O2 in the car.

Title: Re: Another Nite of the OW OW OWs
Post by Margi on Nov 4th, 2003, 10:30am
Glad to hear you're coping better, Camie's Mom.

I'm confused though....what do you mean by two distinctive types of headaches?  

Title: Re: Another Nite of the OW OW OWs
Post by Camerooskis_Mom on Nov 4th, 2003, 11:11am
From about Feb thru August this year, Camie would get a major HA about once of month -- not like the CH attack but just as debilitating and lasting much much longer (about 12 hours).  It too does not respond to OTC meds (which is why we were prescribed the Bextra to follow up w/ the Todol if it doesn't respond).  Docs are thinking classic migraine for this one (Camie can sleep and prefers quiet when having one of these).

The problem is now that he is cycling again-- getting him to describe the differing HA's & such.  

This is where I would like some help.  Descriptor words are what I need because it is a learning process for us both (most of these words or feelings aren't in his vocabulary yet, and since I do not suffer them I cannot recommend appropriate words).  Hence, also why I started carrying the PDA.

For instance, what I will simply call the HA is on the same side of head at approximately same place as the CH but unlike the CH - it just kind of sits there, feeling heavy (this is the best way I can get him to describe it to me).  It usually gets rated at a 6.  

The CH on the other hand he describes as stabbing, shooting - he feels like he could just punch his fingers through his skull and mess up his brains - and he wishes he could, he knows it would make him feel better.  These usually get rated a 9 but occassionally, if we are lucky and can catch them early on onset they only get to a 6.  When they get to a 9, he is in full blown panic and can't sit still.  After the attack, we try to talk about his "feelings" (he is now seeing a Child psychologists who is going to be helping us put words to them now).  

He usually will vomit violently when at the 9, but it is felt this is due to the stress, anxiety and pain - not due to the attack itself.  These attacks only last 90 minutes but they are heart wrenching.  We are having trouble getting Camie to help put descriptors to what it feels like when the attacks are coming on - and he is a typical active little boy who will ignore the obvious in favor of playing - often until it is too late.

Title: Re: Another Nite of the OW OW OWs
Post by Margi on Nov 4th, 2003, 11:25am
Gotcha.  Thanks for the explanation.

OK, I'm wondering if what he's describing as "heavy" are actually SHADOWS.  Most clusterheads get those between attacks, preceding attacks, following attacks.  Sometimes they don't develop into full-blown, sometimes they do.  

I think you hit on a really key point - about him being a typical child and leaving everything until the last minute (like during potty training, right?  by the time they know they have to GO - it's often past the point of no return.)  I think it's crucial that you work with him to teach him the impending signs of attack and how VITAL it is for him to get to the oxygen at THAT point.  It CAN abort his pain if he catches it early enough and he may only have to go 15 minutes instead of 90 in pain.  Also, it may prevent the vomiting because he may not reach that panic stage.   I'm wondering if those meds aren't contributing to his vomitting....  Donna said those meds are NSAIDS.  I'm sure gastric upset is a common side effect.  

My two cent's worth, anyway.

Title: Re: Another Nite of the OW OW OWs
Post by Camerooskis_Mom on Nov 4th, 2003, 11:39am
Unfortunately the vomiting proceeded any meds  :(

How would you describe "shadows"?  Could you try?

Title: Re: Another Nite of the OW OW OWs
Post by Margi on Nov 4th, 2003, 11:49am
OK, I typed in 'definition of shadows' to the search engine here and up came a myriad of threads about shadows. I didn't go through all of them, but found this classic thread from the early days. Jonny defines it quite well, so do many others. Pardon the goofiness that develops in this thread, but there really is some good information contained if you take the time to wade through it all.

actually, here's a saner thread - read Carl D's description.

Title: Re: Another Nite of the OW OW OWs
Post by Karla on Nov 4th, 2003, 7:39pm
Hi Mom, I suffer from chronic ch and migraines both.  I have an 18 year old son who also suffers from both eposodic ch and migraines.  My son and I both rate a full blown migraine at about a 6 on the pain scale.  The ch is a 10.  A shadow is a low level ch like level 1-4.  You feel the pressure and pain building but yet it isn't full blown yet.  Just there waiting and taunting you.  That is the best time to catch it with oxygen, in the shadow stadge.  Shadows can really wear a person down and lower your defenses and make you a little crazy and the panic attacks set in because you know what is comming.  I hope your little one finds relief soon.

Title: Re: Another Nite of the OW OW OWs
Post by TxBasslady on Nov 4th, 2003, 11:24pm
What a heartbreaker!!

Such a shame that a child as young as Camie has to suffer with this.

God, I wish I could take the pain for him.    :'(

You're a tough Mom...don't know if I could be that strong.

Sending bunches of pf vibes to Camie....and lotz of prayers for you, Mom.

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