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My Son has CH (Read 3829 times)
Erics.Parents
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My Son has CH
Nov 18th, 2010 at 1:18pm
 
Hi Everyone - First let me introduce myself.  My name is Denise and I'm Eric's Mom.  This past summer my son developed Cluster Headaches.  Although they were bad when he got them, he was getting maybe a couple a week.  But starting in October, he started getting them everyday.  It has been very fustrating for him and us.  He is in High School and is a great wrestler.  Now not only is this interfering with his ability to wrestle, it is interfering with school itself not to mention his social life.  His grades are the lowest they've ever been because he has missed so many days of school.  I get so fustrated, sometimes it makes me mad, sometimes it makes me cry.  I hate to see my sons teenage years like this, he can't wrestle, he can't go to school, he can't go out on the weekends, and most of the time he can't even drive anywhere.  I have a ton  of questions I would love to ask if you all don't mind.
1 - Is there anyone in Georgia here and does the weather (barometer) affect CH make it worse (like at this moment)
2 - My son is on O2 but at 8 LPM.  It's not working that well anymore, do you think he needs more LPM.
3 - What is the best preventative.  He is currently taking topamax, 200 mg per day (100mg in the morning and at night).  When his Dr. changes the dose, it helps for about 2 days then he back to where he started.
4 - The Dr. just put him on Amitriptline.  Is anyone else on this and does it help?
5 - Nothing is making the headache go away now...not O2, not redbull, not maxalt, not sumatriptan, not cambia.  Suggestions...
6 - Triggers???? got any suggestion on these also.  We've tried taking him off chocolate, dairy, wheat, oranges, bananas, tomatoes and doesn't make a difference.  He goes to bed and wakes almost the same time everyday.

I'm sorry to make this so long.  I'm about at my end.  I don't know whatelse to do.  Oh, did I mention he did the nerve blocker shots and it last 5 days...the most but now they're back.
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Mike NZ
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Re: My Son has CH
Reply #1 - Nov 18th, 2010 at 1:39pm
 
Hi Denise

Has your son been seen by a headache specialist? With CHs being pretty rare most doctors have limited experience in dealing with them.

For your questions:
1. Not sure about others in Georgia but there will probably be some.
2. 8lpm is pretty low. Most people use higher rates to get quick, effective relief. I use 25lpm and I can abort a CH in about 6-8 minutes. If the doctor won't let you have a regulator that goes over 8lpm then you can buy one that goes higher.
3. The best preventive is the one that works for Eric. The most commonly used one is verapamil although other people here are using topomax, lithium or combinations. People with CHs typically use doses that are a lot higher than many doctors are used to using for the drugs primary use.
4. Amitriptline can also work as a preventive and there are people here using it. It was what I was originally given but I found I got significantly better results with verapamil.
5. I'd try using oxygen at a higher flow rate, at least 15lpm and higher if possible. Is he using a non-rebreather mask? Read the info on oxygen on the left for info about using oxygen effectively. Also ask about imitrex too, which can abort a CH quickly, but it can be expensive (look at the info on the left too for using this).
6. Alcohol is a very common trigger for most people, but otherwise it varies for people. In general, food does not tend to be a trigger.

Don't worry about long posts or lots of questions. People want to help and remember when they first came here and were in a similar situation.
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Re: My Son has CH
Reply #2 - Nov 18th, 2010 at 1:54pm
 
10 mg of Melatonin 1 hour before bed allowed me to starve off my night hits and sleep. Melatonin is found at any drug store OTC. I was a night hitter ONLY and it worked great for me,sometimes takes a few days to work but worth a try,no side affects to speak of. Alcohol is one of the worst triggers. Get him to a HEADACHE SPECIALIST THAT KNOWS ABOUT CH's..

Good Luck,keep us posted.
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« Last Edit: Nov 18th, 2010 at 2:24pm by mikstudie »  

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Erics.Parents
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Re: My Son has CH
Reply #3 - Nov 18th, 2010 at 4:31pm
 
Hey - Eric is seeing a nuerologist now, at first for migraines but now for CH.  I don't think he knows too much about CHs though.
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Re: My Son has CH
Reply #4 - Nov 18th, 2010 at 4:55pm
 
Erics.Parents wrote on Nov 18th, 2010 at 1:18pm:
1 - Is there anyone in Georgia here and does the weather (barometer) affect CH make it worse (like at this moment)

I'm not in Ga. but that is a Yes on the barometer for many, this can play hell with travel plans either by car or plane. Just make sure he has a good Abortive such as O2 or Imitrex.

Erics.Parents wrote on Nov 18th, 2010 at 1:18pm:
2 - My son is on O2 but at 8 LPM. It's not working that well anymore, do you think he needs more LPM.

Yes that is to low he will need 25 lpm or higher.

Erics.Parents wrote on Nov 18th, 2010 at 1:18pm:
3 - What is the best preventative. He is currently taking topamax, 200 mg per day (100mg in the morning and at night). When his Dr. changes the dose, it helps for about 2 days then he back to where he started.

Not sure about the "best" prevent but the most widely used with success is Verapamil in varying doses.

Erics.Parents wrote on Nov 18th, 2010 at 1:18pm:
4 - The Dr. just put him on Amitriptline. Is anyone else on this and does it help?

Amitriptyline doesn't help with CH but is a muscle relaxant, I am assuming the Doc gave it to him to help him sleep. (Amitriptyline can trigger more CH hits in my experience so I stopped taking it years ago.) It would be better to use Melatonin or an over the counter allergy pill like benadryl or zyrtec before bed to help avoid night time hits.

Erics.Parents wrote on Nov 18th, 2010 at 1:18pm:
5 - Nothing is making the headache go away now...not O2, not redbull, not maxalt, not sumatriptan, not cambia. Suggestions...

Sumatriptan will help in shot form or nasal (nasal takes longer to work normally) O2 will work in a higher lpm than he is at right now.

Erics.Parents wrote on Nov 18th, 2010 at 1:18pm:
6 - Triggers???? got any suggestion on these also. We've tried taking him off chocolate, dairy, wheat, oranges, bananas, tomatoes and doesn't make a difference. He goes to bed and wakes almost the same time everyday.

The only known agreed upon food/drink type trigger is alcohol. Your son may have other things that aggravate his CH he will need to pay close attention to what he does ingest to figure them out as each person is different. MSG is a known trigger for migrainers and is found in may things, chips, processed meets, soups, packaged gravies, Chinese take out etc. You'll need to read labels to see if they contain Monosodium glutamate. The best way to tell is to cut these items from his diet, if you notice a down tick in the number of CH hits then you'll know its probably an aggravation for him.

Good Luck and I hope some of this helps.
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« Last Edit: Nov 19th, 2010 at 6:29am by JustNotRight »  

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Re: My Son has CH
Reply #5 - Nov 18th, 2010 at 5:52pm
 
Unfortunately, neurologists are not necessarily head ache specialists.
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Re: My Son has CH
Reply #6 - Nov 25th, 2010 at 11:05pm
 
Hi there, my son was also diagnosed when he was a teenager, it took about 2-3 years to get the right diagnosis, we tried any and all things from oxygen to now Verapamil, it seems to be the best by far, my son has had them since he was a freshman and he is now 25 in December, there's nothing worse than seeing your child suffer and you can't fix it.... He now takes Imitrex shots that work the best when he gets an attack, they usually come when the weather changes for sure, but during his session he can't drink or eat citrus,it seems to trigger them, I'll keep you in my prayers and just know he will make it, ya will just find a way to fit it in your lives.
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Re: My Son has CH
Reply #7 - Dec 6th, 2010 at 8:04pm
 
Thanks, clustermom.  I am going to ask for a blood test to look at the homones and testosterone factor.  I'm so afraid of all the medications because it seems to make the CH worse years done the road.  Is your son Episodic or Chronic?
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Re: My Son has CH
Reply #8 - Dec 8th, 2010 at 7:49pm
 
I don't think the medicines make CH worse.  My doctor told me yesterday that the reason why my headaches got so out of control (large number of headaches per night) is because I had never been treated with verapamil--I've been getting these HAs since I was 14--am now 36.  He said if I had been treated with verapamil when I was within previous cycles that when the next cycle came the headaches would have been less in frequency and intensity.
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Re: My Son has CH
Reply #9 - Dec 8th, 2010 at 9:26pm
 
starlight wrote on Dec 8th, 2010 at 7:49pm:
I don't think the medicines make CH worse. My doctor told me yesterday that the reason why my headaches got so out of control (large number of headaches per night) is because I had never been treated with verapamil--I've been getting these HAs since I was 14--am now 36. He said if I had been treated with verapamil when I was within previous cycles that when the next cycle came the headaches would have been less in frequency and intensity.

The meds may not do that to you, but there is a LOT of anecdotal evidence to the contrary.
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Re: My Son has CH
Reply #10 - Dec 8th, 2010 at 9:54pm
 
Brew, don't know--you'd have to be more specific.
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Re: My Son has CH
Reply #11 - Dec 8th, 2010 at 9:58pm
 
Only thing I know is that with me my HAs got out of control over many years with no meds (except O2), for me I gotta take meds now cause of the high frequency at night.  But I am all for anyone who can fight them with O2 alone--it's natural, etc and works well for many.
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Re: My Son has CH
Reply #12 - Dec 8th, 2010 at 10:18pm
 
All I can do is tell you to be on the lookout around this website for people who say that use of conventional meds seems to have made their cycles more protracted. I can't say that my personal experience is as such, but a lot of others have said so.

I do know that when I abandoned all conventional meds - verapamil, lithium, triptans, sansert, neurontin, others - in favor of busting methods, I haven't felt better since I started with this affliction. And I haven't taken one microgram of any of the conventional meds since 2009.
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Re: My Son has CH
Reply #13 - Dec 9th, 2010 at 2:26pm
 
Mother Nature knows what she is doing!

I have read that sometimes conventional meds have made others cycles more protracted.  I will be curious if that happens with me now.  But definitely willing to make the gamble b/c the frequency per night had gotten too great, but i'm sure it is a gamble in some ways.
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Re: My Son has CH
Reply #14 - Dec 10th, 2010 at 4:35pm
 
In Holland you can do it through a private laboratory for 50 bucks but I don't know how it works there. I would recomend you keep him totally off chemicals in his food and drink check for candida in his stool.The drs are not too efficient here so I would try holistic or naturopath.If you can't find that keep him off sugar,pop, and white flour products for a month and see if you see a difference.

Good luck and God Bless you both
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Re: My Son has CH
Reply #15 - Dec 10th, 2010 at 4:53pm
 
julyn wrote on Dec 10th, 2010 at 4:35pm:
In Holland you can do it through a private laboratory for 50 bucks but I don't know how it works there. I would recomend you keep him totally off chemicals in his food and drink check for candida in his stool.The drs are not too efficient here so I would try holistic or naturopath.If you can't find that keep him off sugar,pop, and white flour products for a month and see if you see a difference.

Good luck and God Bless you both

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Re: My Son has CH
Reply #16 - Dec 10th, 2010 at 5:39pm
 
"Check for candida in his stool?!?!"  YIKES!
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Re: My Son has CH
Reply #17 - Dec 10th, 2010 at 7:37pm
 
Potter wrote on Dec 10th, 2010 at 4:53pm:
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Simply brilliant.
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Re: My Son has CH
Reply #18 - Dec 11th, 2010 at 3:34pm
 
LOL!  And I love the part where he checks the pyramid clock in the background!!!
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Re: My Son has CH
Reply #19 - Dec 11th, 2010 at 3:35pm
 
"And a whole tray of flower remedies"
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Re: My Son has CH
Reply #20 - Dec 11th, 2010 at 4:09pm
 
julyn wrote on Dec 10th, 2010 at 4:35pm:
In Holland you can do it through a private laboratory for 50 bucks but I don't know how it works there. I would recomend you keep him totally off chemicals in his food and drink check for candida in his stool.The drs are not too efficient here so I would try holistic or naturopath.If you can't find that keep him off sugar,pop, and white flour products for a month and see if you see a difference.

Good luck and God Bless you both

Are you Serious ??? Grin

Potter wrote on Dec 10th, 2010 at 4:53pm:
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That's Strong Stuff!!! Grin Grin Grin
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Re: My Son has CH
Reply #21 - Jan 3rd, 2011 at 11:56pm
 
Hi Erics.Parents,

My son, like yours, was an athlete in H.S. He excelled in football, track and basketball. He started playing Pop Warner football when he was 11 and had his first cluster attack when he was 12 after the first season ended. He remained episodic through H.S. He only had one HA during a game and its severity was such that the game was stopped and the crowd was polled for Imitrex. A nice lady came to his rescue and after staying out for a couple of plays he was able to re-enter the game.

It wasn't till after H.S. that he became chronic. He's now 26 and until recently CH occupied his entire life. No work, no college, no social life, no friends. Nothing but CH. He went through the gamut of CH meds, some of which helped for awhile and some didn't. That all changed when I read an article in the journal Neurology which had a lot of anecdotal evidence to the effect that psychedelic drugs like LSD and Psilocybin could both stop a cluster attack in its tracks and prevent future attacks from occurring. These drugs became illegal during the Nixon administration as a counterattack to the anti-war hippies for whom these drugs were almost sacraments. Being an old hippie myself (I'm 64) didn't help much. It took several months to find a single dose of LSD. My son took 1/2 of that dose which apparently wasn't enough to cause any hallucinations but 6 hours later did cause my son's constant CH to completely disappear! The rest of his story is in the Topic 'Time for the 75-80% to stand up and be counted' in "Medications, Treatments, Therapies."

Subsequent to finding this website, I found ClusterBusters (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register), the sister site to this one which also has a forum (message board) and is devoted to alternative methods of "busting" cluster headaches through the use of both legal and illegal psychedelics. If you reach the point where traditional CH medications are no longer working and/or would like to learn about alternative methods of dealing with CH, please visit the website. Many members here are also members of ClusterBusters. Good luck to you and your son.

Ron
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Re: My Son has CH
Reply #22 - Jan 14th, 2011 at 3:59pm
 
the O2 is way to low and needs a better bag for delivery which you can buy.
one of my triggers is too much physical activity and yes the barometer and for me elavation
no alcholol
imitrex injectable is the way to go , pills wont work fast enough, you can get generic and it comes vial. a lot times half dose works so you get two injections from one vial.
try a combo attack proper o2, imitrex,a monster drink or equivalent, ice packs and stress ball to beat my head with(they call us headbangers for a reason) Cheesy
i was episodic at eric's age turned chronic at 40
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Re: My Son has CH
Reply #23 - Feb 6th, 2011 at 12:24pm
 
I am sorry to hear about your son. I became a CH Sufferer in my early 20's. I have my first child on the way and have thought about the genetic aspect of CH. The pain in yourself is unreal, I cannot imagine watching my child suffer the way you have. I pray that you will find answers soon and that he will find relief sooner.

dault
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