We are here for you- I know what a relief it is to not be alone with this! I too am a supporter, so we're here for you too. Be strong and let us know whatever you need!

Please search this site for the following: Melatonin, Welders Oxygen, and Red Bull. The regulars around here have FANTASTIC info- Marc, Joe, and others helped me get set up with an O2 set up for the husband that I could get without a prescription. I don't know how to forward the info Marc sent me in PM (not even sure exactly what that is) but if he doesn't chime in I'll try to figure it out.

Real quick, have him chug a Red Bull at the first sign of a headache or shadow, the Taurine in them helps. Amazing that a $1 drink could stave off such torture, but it's true.

Also, napping is kinda a no no, it's a trigger for many people here.

Thank you so much!

Napping is a trigger for him too. But he is so exhausted, he just kindof passes out.

His dad is on O2, so I'm gonna see about borrowing one of his portables.  (I'm a paramedic, this stuff would be so much easier to come by if I was working.....)  Thanks for the Red Bull tip.  I'll be headed to the store here shortly.  If it works, I'll buy them all!!!

Even though we don't have insurance, I think I'll print all of this info I've found, and take it to his doctor.  I don't blame the Dr for not catching it.  From the way it looks, it's very uncommon, and we live in a small town in North Carolina.  His Doctor is the type that he will research it and be ready to help.  He knows my hubby isn't a "Drug Seeker", because other than these headaches, he has to be half dead with pneumonia or something before he will go. He had been prescribing vicodin 500mg and would give 50 at a time with 5 refils....lol.

I just figured this out yesterday, so I've been sitting at this computer, taking in all this new info.  I'm still in awe that there are others, and that there is an actual medical term.  Knowing is a relief, but knowing isn't going to make them stop, unfortunatly.

N-SAIDs seem to help some. (Ibuprofin, naproxine...etc.). But he has taken so many, that I worry about his liver.  Now we have other options, thank goodness!

He has said over the years that these things were gonna kill him.  His cousin died of a brain cancer 3 months ago at the same age he is. (40)  So when they came back this time, there was a whole new fear for him.....So on top of the headaches, he was having anxiety attacks too.

Good news honey!!!  It's not cancer!!!  So it looks like we might make it to "the sitting in rocking chairs on the front porch, watching the grandkids" age after all!!!

I wish they knew the cause.  A cure would be even better.

Print out the PDF file I sent you for your doc; also this one:




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
======
If he wants deeper material:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 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....")

And give him this web site. One of  the better headache docs in the Chicago area.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or




Best wishes,

Bob
(ex-Rutherford Cty boy)

hello Sandy

All of the above and definitely try the energy drinks if your hubby doesn't like red bull there are many others to try , I personally use red bull because it's the only one that's sparkling and not full on fizzy so I can drink it quicker ( quicker the better ) also most of the others have artificial sweeteners in , which really don't agree with me.

And just because no one has mentioned it yet have a look at cluster busters site ( link to the left <<<< ) thay are haveing some fantastic results with an alternative treatment (not entierly leagle cos the authoritys have deamed these drugs to be medicly non benificial , I think every one over at clusterbusters would strongly dissagree ) if you can go that way.

You have found the best place in the world for knolage and advice, the people here will help change the game for you and your husband and help get your lives back. Feel free to ask as many Questions as you like, come for a chat or even a rant if thats what you need and theres even a special borad for supporters to chat.

Good luck and God bless

Nigel

ps sorry if this is all mis-spelt , the spell cheker dosn't seem to be working and I can't spell to save my life.

Thank you all so very much!!! 

It's almost midnight here.  Hubby says he can feel the little sucker just sitting there, right behind his right eye......Like it's waiting for him to close his eyes, so it can morph into the demon that wakes him up,by sinking its teeth into his brain.
Tonight, he has taken 5mg of melatonin and one aleve.  We have a Red Bull at the ready.....  And the coffee pot is ready. I have a question about the Red Bull though.  Does he chug now, since he can feel it, or does he wait to slam it when it wakes him up?  I'm guessing the latter.  Seems like that would make more sense. An aborter? (Trying to use the new terms I've learned. )

I posted in another forum last night, while I stayed up all night to monitor our new found melatonin and Red Bull.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I'm proud to report, that after pinging at a 10 at 2am for the past 2 nights.......last night was AWESOME!!!!  My hubby is so happy!! He is layed out on the couch playing beautiful music for my ears....."Snoooooorrrrrreeee!"   By George, I think we're on to something here.

You GUYS FREAKIN ROCK!!!!!!!!

Last night was great, but about 9am, 30 minutes after I posted, all hell broke loose.  That wonderful snoring I was hearing was a BIG NO-NO!!!  I've never seen him have one THAT intense in the day time before, and it was a scary one.  It went from "Shadow", to a full blow 10, in what seemed like seconds.  The whole thing may have lasted 30 minutes, but it seemed like an eternity.  (I need to keep a notebook around and start writing it all down.)  He was in full blown agony, (The "I could shoot myself right now, and not think twice" stage), for at least 10 minutes.
I'm trying to convence him to get on here and talk to all you wonderful people.  We don't have a diagnosis yet, but I'm sure (100%), that I have found the answers.

He described to me, the best he could, how it felt today.  He said that it's like, "A balloon with jagged edges, that starts to expand and push out.  Starting with the front.  It feels like it expands, and wants to push my right eye out of it socket.  My eye could explode at any time, and it would probably feel good.  While it is still strong and ripping and puching outward in the front, it expands to the back.  Like it wants to literally, break out of my skull.  Once it reaches the back....I know that it's almost over."
Dr has always said "Sinus Headache"..... It made sense.  His headaches always seemed to start at the same time my allergies flaired up. (Spring and fall)  He has a deviated septum from all the years of martial arts, and broken noses.  At one point they did an MRI and found black spots. They said that he had, (I forget the technical term), parisites. (Worms in the brain.....)  What they diagnosed, is even rarer than cluster headaches.  We found out (from his mother)that when he was 12, he was knocked out, and he had the spots then.
I think I always skipped the info about "Clusters", because, the name just didn't seem to fit.  Which SOUNDS worse "Cluster", or "Migraine"?....and "Migraine" didn't even begin to cover it.
There needs to be more "Awareness".  But then again.....you put it out there....then all the drug seekers start piling into the ER.  (Trust me, I'm a paramedic....I know..lol)  It would be worth it, to reach those that are suffering alone.
Thanks everyone.  I'm going to go get the ammo ready, he fell asleep about 30 minutes ago.

Knocking on wood!

Keep us posted, here's hoping you guys had a painfree night!

I am so with you on that- the words cluster and headache sound so benign, right? Calling it a headache is like calling getting shot in the gut a stomachache!

My husband tried 9mg of melatonin last night, our first attempt with it, and had a breakthrough kip4 2 hours after falling asleep. So have hope, I've heard it can take some tweaking the dosage to get it right.

I will really suggest getting O2 for him. Heck, I even have a brand new non rebreathing mask if you want me to UPS it. I got one from the site here, so I have 2 extras of the ones I was able to find at a medical supply place in town. They arn't the best compared to the one they sell here, but they DO get the job done with some tweaking.

Here is my cost breakdown on the welding O2 set up we got:

M tank rental- $50 (I had a tank available to us, thankfully, but I asked when we got it filled) Should get about 15-30 aborts outta that size (4' tall, 70lbs)

Regulator- $75 at welding store. You can buy them cheaper online, but I didn't want to wait.

Adapter for output line- $6. The Output line on my regulator was one for about a quarter inch size screw on hose- had to get the adapter to minimize the size and so it would fit the push on small hose for the mask.

Nonrebreathing mask- $2 for what they call "disposable" ones, $27 for the one from the site here. The Cadilac of non-rebreathing masks!

Refill on tank- $14.

$10 in chain and hooks to attach our O2 tank to the wall next to the bed. That sucker is HEAVY and we have 2 little ones. (youngest daughter's nickname is Destructor if that gives you an idea!)

We luckily have insurance right now, but when husband first got diagnosed we didn't- yeah doc, thanks for the $180 Imitrex perscription we couldn't fill! We can get it now- but O2 is MORE effective MORE of the time than the expensive perscription is. It has been a real lifesaver.

Also, and maybe Joe can weigh in on this- but I believe he said vigorous exercise used to work for him as a abort. Doesn't work that way for my husband, but maybe worth a try...

I AM Joe...and I approved this message!

Yes, vigorous exercise...I mean an all out sprint until you're ready to throw up kind of run for 20 minutes would abort ar at least substantially reduce the intensity of my hits. With oxygen I am fatter...but suffer far less!

Joe

Sandy wrote on Oct 6^th, 2010 at 10:23pm:

  Does he still have the brain worms?

             Potter

Sandy, tell you husband to look around here,i felt better just venting and talking to others that understand me.   Tell him we only bite during a cluster period.

Sandy,

I am also a Sandy, and I also live in a small town in North Carolina - Jamestown, between Greensboro and High Point.  Your last name begins with C, so does mine, Cullen.  What a nice coincidence. 

Hi neighbor!  Let's get together for some coffee and a chat. 

Welcome home.  You have found a new family here.  I found this family in 1999 and they have given me so much more information on CH than any doctor in the world could give.

Keep in mind though, we are all slightly crazy, but what family isn't

We will do all we can to give you what we have learned over the years.  We are not doctors, but we certainly have a combined wealth of knowledge and experience that we are willing to share with you if it will help.

I am also sending you a PM.

I hope we live close - I would love to meet you.

Sandy

PS - we gotta work on our signatures together so everyone else will know which Sandy they are talking to