I think my subject stresses the majority of what I wish to say.  

I'm a student, a seminarian actually, 26, and I've been suffering with CH for over 5 years now.  Thankfully, I only have a "moderate" case of CH.  My beast attack no more than twice a day.  Although I suffer episodic CM, my attacks are typically at the 8-10 range.

It started when I was at college, with small hints of them when I was in high school.  With each passing year, they grow more and more intense.  No one around me understands.  They all think that I just suffer from "migraine" headaches.  I try to explain to them that these are as different from migraines as humans are from earthworms, but all they try to do is "solve" my problem by giving me useless, albeit heartfelt, advice.  

What I yearn for so greatly is just a group of people who will understand, and even empathize with me.  

As I stated at the outset, I'm a seminarian, studying to be a priest.  Currently, I am taking the equivalent of 26 credit hours.  These sleepless nights are horrendous.  The fact that y'all refer to the pain as "the beast" is perfectly correct.  With days starting at 5-6am, the hour or so lost battling the beast makes all the difference in my ability to function.  Not only that, I fear resting during the day because the beast attacks during naps as well. It has given a whole to meaning to the scripture passage referring to the devil as "a prowling lion."

I humbly ask for your prayers as I continue to bear this Cross that I have been given.  I humbly ask also for some of the members here to talk to me and remind me that it is only temporary. It is difficult going at this alone.  

Yours miles ahead of most because you already have the psychological aspect of the beast beaten. It doesn't kill you, it does end. That being said........what's your regimen? Do you have a good preventative medication you take to reduce hits? A good abortive strategy when they do hit? Do you have oxygen? Tell us a bit about HOW you're treating them. We not only understand your pain, among this board is about 10,000 years of practical experience. It's the strength behind the board. So please let us know what you're doing for treatment, see if we can help you.

Welcome home, give us a chance to make that yoke a little lighter. ;)

Guiseppi

Quote:

What I yearn for so greatly is just a group of people who will understand

You certainly came to the exact right place for that  here.

If you look around this site on all of the boards here, you will gain lots of knowledge that you will need to fight this.  

You will also start to understand how you have stumbled upon a "family" here.  You are now part of that family and I welcome you.

 There is nothing better than,  not only having the tools you will learn about here to fight the beast....but talking to all of us, asking questions and getting the best support anywhere from people who know exactly what you are talking about.    No one here will ever tell you..."Oh, it's just a headache, go lay down or take some aspirin"

PLEASE ask any questions you may think of. None of us are Doctors..but together we have thousands of years of experience with dealing with CH.   I've been chronic for 21 years, other are episodic as you proably are.

Keep saying this to yourself because it is true.  

"And this too, shall pass"  

You will be in my prayers and I will offer my Sunday mass up for you. ;)


Linda Howell

Hi, I was cronic for over 20 years, I am now eposic, I lobe it, I use O2 and it works for me, When you ude your O2 don;t suck on it ti=o hard, just rek=last think of sokmething good, Yu will be suurprised how much thuis helps. I don't take any kins of meds for them, I do take a zanx that eases th next oain afer I have one,'

There aee a lot of thinghd I have donr, e use  to have a in groud pool, When one would hit me I woukd die into the pool. The cold water wouldabort it,''

I don;t some crazy thinhgs t stop the pain, hang ny head off the bed, I even got my Hussband ti hold his hands as tight as he ciukd ariund the frohead, I sleep in a car on a very cold snowy night,'

There is all kinds of trickswe have uo our sleevesm

Hello young man, and bless you. I'm in my 29th year of episodic clusters, I'm 49, and only found this site a year ago. The help, understanding, and love that you'll find here is truly a God send. But, unfortunatly, most outside of "our" world will never truly understand. Look for the advice that sounds reasonable and try ALL of them... you'll find one or more that will at least give you some peace. Never let it win. Goodluck

Welcome to CH.com, the best human support for CH on Earth. You will find people who suffer and people who support them. We get angry at times because we're in pain or haven't slept etc., but we are all here for the same reason. It is our Cross to bare and bare it we will.

Please tell us a little more about youself, ? medications, treatments, do you see a Doctor? Maybe we can help, we're not Doctors but there is a lot of knowledge to be learned from the people and text of this wonderful site that DJ has set up for us.    Again Welcome,  Don

Welcome,
   This is a great place for support.  You are not alone.
Ask and rea dall you can here.  Don't forget, It
Always Goes Away.
     

Prayers and vibes comming your way.  Remember god always has a plan,  we may not always like the plan but it doesn't kill us and it definently makes us stronger.
 Good luck in your studies hang in there and dont let the beast win.
   Phil

My sincerest gratitude goes out to all who offered their kind words and prayers.  Truly, God is present in this forum.

Some asked for me to say a little more about my situation.  Well, I have been episodic for over 5 years, and had no real diagnosis for the first three.  Those were tough times.  I had taken every doctor's advice known to man until I was properly diagnosed.  My dentist thought it was due to breaking my jaw and told me to wear a bite-plaine or something like that.  Not only did it fail in helping the headaches, it caused more pain for my jaw.  I saw several eye doctors thinking I just needed a new prescription, and again was disappointed because the headaches continued.  A good natured friend of mine even made me some tea once ... only later to find out that since she was a wicken, she had said some magical spells over it.  It took me multiple meetings with a spiritual director and even a few confessions to get over that setback.  After all of this, I was still plagued with headaches.

I now have prescriptions for prednisone and maxalt.  They seem to work ... sort of.  The maxalt works the majority of the time, but every now and again, the beast is stronger than the maxalt.  Prednisone seems to reduce the overall length of the cycle, but i hate how it makes me feel and gain weight.

My most recent visit to the doctor resulted in a phone number for a headache specialist.  I think I want to go, but again, I can't get proper advice from anyone else because no one seems to understand the severity of the headaches.  "Just rock your head back and forth, that works for me with I have a sinus headache," or "take a hot shower," or "just relax, the more you tense up the worse it gets" ... these are the typical response.  I even had to justify to one of my seminarian friends that this condition warrants the sacrament of anointing of the sick.  

I think that's the most taxing.  Constantly having to justify my condition to someone else.  

I can't thank you all enough for the prayers and the opportunity to talk to others who truly understand, and aren't trying to feed me magical potions or superstitions.

Last night was truly a gift from the Lord.  It is was one of my headache-free nights.  I am rested for the first time in several weeks, and ready to do the work that the Lord has placed before me.  

Today, when I attend Mass, I will offer the sacrifice of myself up in thanksgiving for a restful night, and a wonderful community of supporters.

Thank you all, May God truly continue to bless you and keep you.

all the people here are great and helpfull im new to this site also and have been welcomd to the family
so now i can also welcom you
so prayers from israel are heading your way
im also in a cycle and my beast is a bit out of control
i was hopless afew days ago but now i have found this place and new hope
thank you everyone here

While there isn't a cure for these things yet, most find they can "manage" them with a 2 pronged approach that will return your life to some semblance of order.

1: A good preventative regimen. This is a medication you take to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day. It will block 80% of my attacks after I've been on it for about 2 weeks. Other popular prevents are verapamil and topomax. Many others to read about and discuss with your neuro.

2: A good abortive regimen. A headache has begun, now what? Your first line abortive should be oxygen. Sounds weird but breathing pure oxygen causes a vaso constrictive effect that will stop the headache in its tracks. As fast as 6 minutes for me and I've been battling these things for 30 years!

This is best accomplished using a high flow regulator, at least 15 LPM, a Non Re Breather Mask, this is critical, nasal canulas and re breather masks dilute the pure 02 and make it worthless, and you have to start the 02 at the first sign of a headache.

Imitrex injections are a very effective abortive but are expensive and I hate the side effects.

That's a lot to digest. The biggest problem with this condition is it is rare, it is incumbent on you to educate yourself and assist your doctor with planning your treatment. We'll help you every step of the way. GET THAT OXYGEN!!! ;)

Guiseppi

Get some O2 and get on it as soon as you feel the CH coming on. 15 liters per minute with a non-rebreather mask. Works for about 70% of us.

RED BULL (or other energy drink with caffeine and at least 1000mg of taurine - check label). Chug a can at the first sign of headache.

Melatonin before bedtime to help get thru the REM sleep and help you get the rest you need to fight during the day.

Oh, welcome to Clusterville. We are a good bunch of supporters here (a little nutz at times, but we are a good bunch). Can't remember for sure but I think you're the first priest we've had here. You may have your work cut out for you.  :)

One thing to remember - we UNDERSTAND exactly what you're going thru cause we've been right where you are. I've been chronic since 97 - episodic before that. I know what the pain "feels" like and what it's like not to be able to get rid of it. And I can laugh about people telling you to "rock back and forth" and "relax" and all the other "helpful" things they say because they don't have a clue. Most of us "explode" about that periodically. Then we have a good laugh about it.

Just stick around and read read read. We have years of education on this board and it's here for the reading.

Again welcome.

Hugs BD

Guiseppi wrote on Oct 11^th, 2008 at 12:05am:

Yours miles ahead of most because you already have the psychological aspect of the beast beaten. It doesn't kill you, it does end.

He's right. It doesn't kill ya & it does end! Once that's down, get informed, find what works for you, & stay in touch with those who are there too...that would all of us! :) Sufferers/supporters...we're all in it together with each other. Welcome! Holding to what you believe, whatever it is, helps to have the psychological strength to carry on through, too. Bless!

"Sacrament of annointment for the sick"

Way to go, Joe, and it can certainly do no harm but I reckon a lot might depend on just what sort of an ointment you're going to use. I tried Tiger Balm and it all but sent me through the ceiling while goanna-oil served no purpose at all save to take my mind off things for a while.

Perhaps an ointment with analgesic, anti-inflammatory and some mint instead of an ice-pack might be the go.

Either way, let us know how you get on because we care.

Brian, you're cracking me up with your Tiger balm.   LOLOL


This is what is used for the anointing of the sick.


Quote:

The duly blessed oil used in the sacrament is, as laid down in the Apostolic Constitution Sacram unctionem infirmorum, pressed from olives or from other plants.

Linda

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all the best
the bb

dionysiusaeropagite,
  Welcome from a fellow clergy. I too am episodic, but thanks be to God they began after seminary (that was a whole different kind of headache sometimes). I am just beginning to understand pain in new ways, it has had an effect on my soteriology and my understanding of atonement. It has had an effect on my understanding of suffering and deepening of empathy for those who hurt (which has way been defined and deepened) More importantly, as I seem to be ending my second cycle, I am experiencing God's Grace through the help and ministry of my congregation. They don't even begin to understand the "headaches" but they can see their toll on me and come along side instead of pity or anger. My feet are being washed, I'm learning a new kind of meekness. I hope that these are some the benefits of the Cross we share. I will pray for you, for you cluster headaches and your seminary-theological-head-pain  :).

P.S. Pred, RedBull, Imatrex, O2 O2 O2, and God Bless the Melatoin for sleep, greatest night the 4 wks just before Sunday

P.S.S Are you btw Greek Orthodox? The name is a G O Saint right and there is a feast day soon (16th?) if so happy feast day.

"The duly blessed oil used in the sacrament is, as laid down in the Apostolic Constitution Sacram unctionem infirmorum, pressed from olives or from other plants."

Thanks for that, Linda, and I'm surprised not to have noticed it before on the treatises and testaments board.

I agree with Joe, though, that the least-invasive method is always best used first - starting with an ointment before trying the different meditations and undergoing liturgy only as a last resort.

AussieBrian wrote on Oct 12^th, 2008 at 8:40pm:

"The duly blessed oil used in the sacrament is, as laid down in the Apostolic Constitution Sacram unctionem infirmorum, pressed from olives or from other plants." Thanks for that, Linda, and I'm surprised not to have noticed it before on the treatises and testaments board. I agree with Joe, though, that the least-invasive method is always best used first - starting with an ointment before trying the different meditations and undergoing liturgy only as a last resort.

     ;D ;D ;D

   Ya killed me.

            Potter