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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Son not officially diagnosed, but fairly certain
(Message started by: HSMom on Dec 14th, 2005, 4:49am)

Title: Son not officially diagnosed, but fairly certain
Post by HSMom on Dec 14th, 2005, 4:49am
I will be hanging out in the support forum for parents of children suffering from cluster headaches.  But, I wanted to post an introduction.

Our son just turned 13 and in the last month started with the severe headaches.  Always at  night and he always wakes up crying (literally in tears).  This is a child who doesn't sleep, but hibernates.  So, we know the pain must be unbearable.  

He has seen his pediatrican and is shceduled for the neurologist on January 5th.  So, I'm reading everything I can on this site and others before that appt.  We have ruled out migraines and are seriously leaning toward cluster headaches.

Right now 2 Advil and a bag of ice helps relieve the pain quickly.  But, I'm afraid that his body will build a tolerance to the Advil and it no longer will be effective.  
We don't like what we read about some of the side effects of other meds.

Poor guy is almost afraid to go to sleep at night.   I know that this group would be great support for him, so, hopefully, he'll be on himself...soon!


Title: Re: Son not officially diagnosed, but fairly certa
Post by marlinsfan on Dec 14th, 2005, 10:00am
Michelle, so sorry to hear that. I too started when I was 14 or so (37 now). If you haven't seen this link, read it and bring it to the neuro:

Also, look at the link on the left on Oxygen. I have no idea what O2 will do to a 13 year old set of lungs, so bring that to the doc too.

Do you drink coffee? My dad is Italian, and all my family over there drink coffee, even teh kids. I know coffee for me kills the headache if I catch it early enough.

Also, try looking up Melatonin on WebMd. I take that when I'm in cycle and it helps a lot with the nighttime attacks. Again, not sure if a kid can take it. It is sold in teh supermarkets and pharmacys OTC in the vitamin section. I take 9 mg every night, 30 mins before bedtime.

Stick around, we're here.
PF wishes to your son.

Title: Re: Son not officially diagnosed, but fairly certa
Post by burnt-toast on Dec 14th, 2005, 1:08pm
My heart goes out to your son and family - and all young sufferers and their families.  I can only imagine how difficult it is for children, young adults and their families.  My prayers are with all of you.

Please tell your son that I fully understand what it is like to be afraid of sleep.  My attacks are primarily nightime attacks and like marlinsfan suggested, look into Melatonin.  It's not perfect but helps me sleep with fewer attacks at night.  Make sure that you take this up with your son's Doctors.  

CH is a rare disorder so you may find it difficult to obtain a lot of information.  Folks here will help whenever possible - if you need it.  Keeping an accurate headache journal will help you understand your son's cycles, help you work with doctors, and experiment with treatment options.  (Everyone seems to respond differently so experimentation will likely to be needed to find a drug mix/dosage(s) that are effective for your son).    

Prescription drug therapy is currently the predominent form of  treatment.  However, options are limited to meds. developed for other disorders.  Don't be alarmed when prescriptions are for meds. that treat Bi-polar, mood,  neurological, heart or other types of disorders.   Please be cautious with meds. that are prescribed,  reasearch carefully and be aware of the effect(s) of long-term use.  Your Pharmacist and google searches for the prescribed drugs will help you research.
Best wishes for your son and your family.  If your son is diagnosed with CH, I hope we can help him understand and cope with this disease.


Title: Re: Son not officially diagnosed, but fairly certa
Post by LeLimey on Dec 14th, 2005, 2:16pm
Hi michelle,
I know your heartache, I too have a child with CH and he is only four. Before diagnosis (he was 3 at the time) the only thing that helped for him was cold, going out into the cold night air. We couldn't use ice, he was fighting too much and we couldn't explain it to him.
O2 is all we have for Jasper, it works fantastically, we can abort in less than 10 minutes using it. I won't let him have any of the other drugs available. he is too young and couldn't tell me how they were making him feel.
Its horrible having a child going through this pain, it tears me in half. My best advice to you at the moment is to stick with using as much ice or cold air as possible, talk to your doctor about o2 therapy. It needs to be at 15lpm for maximum effect.
Read up as much as you can on the different meds available so you can be proactive in his treatment. Ask all the questions you want, we'll help all we can, even if its just to send a hug when you need one!
Let us know how you are both doing okay?

Title: Re: Son not officially diagnosed, but fairly certa
Post by MJ on Dec 14th, 2005, 3:08pm
Michelle Hi

be aware that certain things like advil can actually have a worsening affect on ch. It may seem like it is relieving the pain but more likely the attack has just ended.
The over the counter meds may help between hits but in my case actually make the hits harder and more painfull.

Allmost anything that creates relaxation causes both an extension of pain and of the cycles in my opinion. His age may not let him yet express this as he will only be looking for relief.
However some have used basically harmless melatonin over the counter to relax at night and sleep better.

Title: Re: Son not officially diagnosed, but fairly certa
Post by E-Double on Dec 16th, 2005, 5:56am
Not all treatments work for everyone and being that he does not meds @ this point nor has he been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally.

If he does have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!


Title: Re: Son not officially diagnosed, but fairly certa
Post by Bob_Johnson on Dec 16th, 2005, 7:40am
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH.  (2002)  

Title: Re: Son not officially diagnosed, but fairly certa
Post by RichardN on Dec 16th, 2005, 10:32pm
PF wishes for your son.

 Did you look over the "cluster quiz" (fourth button down on the left)? for cluster traits . . . . one-sided, tearing eye, the "dance", etc.

 Really hope it's not CH, but you're definitely in the right place if it is.  

 Do feel free to ask any questions and keep us informed on how he's doing . . .  and let him know he's not alone.

  Be Safe,  PFDANs


Title: Re: Son not officially diagnosed, but fairly certa
Post by cazman on Dec 19th, 2005, 11:28pm
hello and im sorry your son is going thru this im a sufferer and so is my 14 year old daughter she to is going thru a cycle now it tears my heart out in ways i never thought was possible but i know she is getting the best help i can get her its important that you be a supportive as possible and have him read the info supplied here . my daughter joined this site a couple weeks back and she read alot here and its given her hope as it has for me aswell . her comptuter its broken at the moment and im outa town there are other youngins here.
be strong and understand the illness the more you lnow the more you can be supportive.
god bless and be strong

Title: Re: Son not officially diagnosed, but fairly certa
Post by Will_Williams on Dec 29th, 2005, 12:52am
Ice usually makes mines worse, so I stopped using it. Good luck to you all though. I hope your son feels better! Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
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