I have an appointment scheduled with Dr. Francis O’Donnell, this Friday, May 15, 2009 at 11:30 AM location for episodic cluster headaches.  I got his name from the OUCH group and emailed several CH’s in the area after I made the appointment and those that got back to me all highly recommended him.

I had my first cluster headache over 20 years ago.  I went to ophthalmologists, dentists, internists, GPs and after about a year gave up on the medical profession.  I worked in healthcare and didn’t have much faith in the medical profession anyway and had a life-long aversion to prescription drugs.  One of them even referred me to a shrink.  Another suggested TMJ.  Another sent me to a chiropractor.  Another to a massage therapist (that wasn’t all bad).

I kept it from my closest friends.  I had no idea what was happening.  I used to joke that I wished it was a brain tumor---they know how to diagnose and treat that.

One day, my best friend who was also one of my biggest customers watched me sit in his office and begin to have a cluster headache.  Fortunately, my daytime episodes have never remotely been as severe as my nighttime ones.

“Oh my God!  You’re having a cluster headache---aren’t you?”

“Huh?”

“My brother-in-law has cluster headaches.  He’s been to doctors up and down the East Coast and had more different diagnoses and prescriptions than the law should allow.  It took him six years to finally find a doctor who diagnosed him correctly.  I hate to tell you there is no cure.  There are some treatments, most with more side effects than I’m comfortable with.”

I did some research.  I compared my symptoms.  Yep. I had cluster headaches.

I am currently near the end of a typically twice a year, seasonal cluster headache episode which began approximately 6 weeks ago.  This was relatively mild in that I did not have those three or four late night killers that left me walking in circles in the backyard for hours.

The cycles presents episodically, late spring and late fall  (in Ohio).  Ramp up/down period runs from 6 to 8 weeks.

Known triggers are alcohol and chocolate.  During the acute period, REM sleep interrupted.  After the seasonal cycle is over, I am exhausted from lack of good REM sleep.

Typically left side, some years, right side.  This year, right side.

Heavy smoker most of my life.  Currently have dramatically reduced smoking, i.e., only smoke outside the house or car and while walking, not sitting.  This discipline has helped reduce my cigarette intake to less than a pack a day, normally no more than 10.  Smoke really expensive cigarettes to discourage chain smoking and, they are more satisfying.  During cluster cycles I smoke very little, if at all, but do use Nicotine gum.  Unfortunately the artificial sweetener in the gum does not agree with me.  I tried the patch many years ago but it caused an allergic skin reaction which turned into a really pesky and difficult to cure skin fungus infection.  I have quit smoking several times, once for three miserable years and I still got cluster headaches.

Typical duration is 30 to 90 minutes, based on where I am in the cycle.  The longest ones are at night.

The pain is always strictly unilateral during a given “cluster”.

Symptoms include: droopy eye, bloodshot eyes, profuse tearing, nasal congestion, inability to remain still, strong need for physical movement, excruciating, boring, burning, stabbing, (occasionally) pulsating pain.

During the peak week or two, three to four attacks per day and more than one overnight.

My typical “therapy” includes:

•      Total alcohol abstinence during the cycle;
•      Total chocolate abstinence during the cycle;
•      Warm compresses, sometimes alternating with cold;
•      Showers;
•      Warm water via Waterpick™ on molars;
•      Long, brisk walks, averaging 90 minutes;
•      Other vigorous exercise to include midnight gardening---digging seems to help;
•      Not sure if physical activity does any good or simply makes the time pass more quickly;

o      Typical over the counter analgesics provide no relief;
o      Combination of an OTC decongestant and antihistamine (Claritan, Tavist, Zyrtec) “seems” to reduce frequency but not duration or intensity;

I bought some Kudzu Tea a few days ago.  Went to GNC and got some Taurine and Melatonin.  I can’t say at this stage in this cycle if they are helping or not.

I typically walk 6 to 7 miles a day with my three dogs in two sessions.  A friend with whom I walk indicated that her father had used Oxygen for cluster headaches and had actually achieved a complete loss of symptoms lasting the past ten years.

While I was aware of the Oxygen treatment, I had never pursued it in the past.  The last doctor I suggested it to---over ten years ago---laughed at me and assured me that I was mistaken or that it was a placebo effect.  I asked him what the harm was in trying but he refused.  

This year, on the “back slope” of the spring cluster, I obtained and tried a “recreational” O2 product and it appears to arrest onset and reduce severity.  I say appears to reduce severity because I’m not at the worst phase of the cycle.   I’ve not had the opportunity to try O2 during the most acute period of the cluster episodes---the really bad ones, but…

While I still smoke, I do not smoke in the house (my wife ensures that) nor in the car.  I was a military pilot for over ten years and am well aware of the risks of O2 and smoking.  If I can’t get a prescription for Oxygen and this doctor wants to load me up with drugs I’m not sure what I’ll do next.

I am taking no prescription medications and have no other health issues other than typical morning joint stiffness for which I generally take Ibupropen if I have over-exercised.

I consider myself to be in excellent health in spite of the cluster headaches.  Other than during the cluster periods, I have no sleep issues.

I enjoy a glass or two of wine with my wife in the evening; if she is out of town or I’m in the cluster phase, I don’t drink any alcohol.

Essentially I’ve just “gutted through” the cluster headaches over the last twenty years---but I have dug a lot of gardens and drainage ditches at 2:00 AM so it hasn’t been a total loss.  I occasionally have gotten a moderate headache while driving or during a meeting.  Generally deep, slow breathing seems to help mitigate the pain.  Or, perhaps, my pain tolerance has increased over the last 20 years.

I have NO real interest in any of the typical drugs prescribed for cluster headache sufferers.  Bluntly, the published side effects scare the hell out of me and a “shot gun” pharmacological approach to treatment is of no interest to me.  Perhaps from my days as a military pilot combined with 20 plus years in the healthcare industry, taking drugs is anathema to me.  Nor am I interested in a surgical approach.

The most serious health crisis I’ve had (10 years ago) was the passing of a kidney stone which certainly rivaled cluster headaches in the pain and discomfort department.

The OUCH website and this message board have more information of value for cluster sufferers than almost everything else on the Internet combined.  After a couple of years of lurking, it was time to come put of the closet.

And danged glad you climbed outta the woodwork. Welcome home.

I will certainly not harangue you about your choice in going med free, it's one of the most intimate and personal choices you can make, and it's yours alone to do so.

That being said, your old doc was full of crap!!! It's not a placebo effect, oxygen is damned near a miracle worker for most who try it. I'm 49, male, episodic, typically 2 cycles a year. Like you I don't have a single health problem outside of CH. I've never smoked and like you I drink socially. I can abort a CH attack in 6-8 minutes using oxygen. That includes those minor early in the cycle attacks, all the way up to and including the ass kickers mid cycle.

Read the oxygen link on the left. The key to making oxygen work:

You must get pure oxygen to the lungs, NO outside air, No exhaled air. This is best accomplished using a demand valve, or a high flow valve using a NON RE BREATHER MASK.  When we say high flow we mean at least 15 LPM, some go up to 25 LPM to get relief depending on your lung capacity and breathing rates.

If the current doc won't give you 02, get another doc. As you read the boards you'll see the incredible success it's enjoying. (and no I'm not an 02 salesman!) No drug side effects, inexpensive, and it sure beats doing the 90 minute dance.

No matter what you decide to do, the good news is, you don't have to do it alone. Glad you've joined up!

Joe

Well,

Welcome Home Jim!!!

Since you've lurked for years, I won't tell you to read everything over on the side bar, as you most likely already have.

Just gonna tell ya to kick your feet up, set a spell, and know we'll answer any questions we possibly can.

Pegg

I would probably never have reconsidered O2 unless:

my dog walking friend related her father's success;
so many folks here reported success;
the science behind O2 vis a vis CH makes sense;
I purchased a primitive, recreational O2, canned product and it seemed to work quickly;

Since I smoke (outside only)---and have no intention of lying about it---I hope this new doctor doesn't refuse O2 assuming I'll ignite myself.

He is a neurologist,  he specializes in headaches and has successfully treated several people who responded to me from the OUCH site so I'm keeping my fingers crossed.

Certainly sounds like a good doc then. Wishing you luck!

Joe

Hi JIm,
I too am a smoker and actually quit for 4 months when I first started getting these.  But after the first week they doubled up on me (I am chronic - I get a day off about every 6 weeks), and I started having several a day instead of several a week.  Recently I was accompanied by my daughter to the Headache Center at UCSF.  Being a total fitness and health fanatic, she asked my doctor (who works under Dr Goadsby) about the smoking.  He answered that the tension, anxiety, frustration, stress, fear, and pain are so intense for cluster sufferers that whatever they feel the need to do to reduce any of those is good.

Hi Jim,

What an excellent join in post. It is obvious that you have not just sat back in despair, but have gone to battle with the beast.

Several things to consider. Energy drinks high in caffeine and taurine work for many of us (slammed, ice cold (for me, others prefer warm), at first sign of a hit). Red Bull is the original but dang expensive...lots of much cheaper alternatives, just read the ingredient label. I have found MSG, aspartame and high glutamic acid containing foods (like tomatoes) to be problematic for me. Read food ingredientl labels carefully, MSG is ubiquitous under MANY names.

Welcome aboard the good ship "clusterville" . Sorry you have to be here, but glad you are. And as Helen says...grab an oar and row, no passengers here, we're all crew...

Best,

Jon

Hi Jim and welcome,
I had a feeling some one was watching over my shoulder as i typed. Nice to see your out of the closet can you please put a couple of my skeletens in there for safe keeping  ;)

Mark (nearly nothing to hide  :-X)

Hi Jim and welcome to ch.com.  Glad you joined. :)  

I'll second trying redbull or equivelent at the first sign of a ch.  It really helped me for the lower level hits.

Good luck at the Neuro's.  Let us know how everything goes.

Beth

Hi Jim!  

Welcome home.   Good luck and PF wishes to you!


Jeannie

Hi Jim!  Sounds like you're on top of what you need to do and sounds like you'll be set with a good doc.  :)

I just wanted to jump in on the Kudzu Tea comment.  I'm not aware of anyone using the tea to help with the clusters.  In the recently published results START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE on the effect of self-administered Kudzu, the treatment with kudzu extract is generally Kudzu Root in pill form.  This thread includes a discussion of Kudzu, if you want to follow up:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Wishing you PFDAN!

Laurie

Laurie,

I do have the Kudzu in pill form (Chinese Herbal with some other stuff) and have ordered some from my local GNC in a more pure form.

I drink a lot of tea.  Often hot tea has helped me with my headaches.  So, I figured, why not try Kudzu Tea?

It doesn't taste bad.  It really doesn't  have much taste at all so I've had to help it along with a little Oolong and raw honey.

Welcome to Clusterville... nice family we have here - always glad/sorry to have new cousins show up (glad you found us, but sorry you had to).

O2 O2 O2 -- as a pilot you know it ain't gonna hurt you none... We've got several "old" pilots here (gonna catch the devil for that "old" remark) and they're O2 pushers also. I'm a BELIEVER. I hate meds, but hate PAIN also.

Glad you found us - now get some O2 and get rid of that demon -

Hugs BD :-*

Welcome to Clusterville! Sorry you had to come look for us, but glad you joined. Along with all the other great advice you got in this thread, joining this forum's another big help in battling with the Beast.
Just knowing you're not alone, there's a place where you don't have to explain again and again and still be misunderstood, where you can vent whenever you need to, ask away.... It's priceless!

PFDAN to you!

Lottie

Welcome Jim. You may have noticed the section on the board dedicated to CH Supporters. Your wife would fall into that category so please let her know we're all here for her too.

Christy (Guiseppi's original supporter).