Greetings folks,

The name is Steve and I'm a 30 year old software engineer living in Dayton, Ohio.  I'm in my second Cluster episode after a remission period of 5 years since my last episode.

During my first episode five years ago, at first I had no idea what I was experiencing, but I knew I wanted it to stop.  My primary care doc ordered the usual (I assume) barrage of imaging/tests, which resulted in no abnormal physiology.  He wanted to slap the term 'atypical migraine' on it, and bandage it with Paxil.

Having had negative experiences with SSRIs for Anxiety in the past, and feeling that he wasn't really fully understanding the pain I was experiencing, I decided to do my own research.  I came across this little known condition called 'cluster headaches,' and reading about how the condition presents was an epiphany for me.

Headaches that wake me from sleep, unilateral, excruciating, short-duration, same time every day, watery eye and runny nose on that side of my head during the attack, etc...

"Holy crap!  This is what I have!"

At my next visit to the Doctor, I explained what I had found, and he was (as I'm sure many of you have experienced) hesitant to give me a diagnosis of CH.  He still wanted to call it atypical migraine... Regardless, I asked him for Amitryptaline, 10mg, taken at bedtime and he agreed.

By the time I started taking the Amitryptaline, about 3 months had elapsed since my first headache.  After a week of the amitryptaline, I didn't have another headache.  Though now, I'm quite sure my cycle just ended and it probably didnt have much to do with the meds.  I continued to take the amitryptaline for about 2 months, and then weened myself off of it.

Fast Forward five years to about 1 month ago, and I had my first mild attack of this episode.  I called my doctor's office and had them call in my amitryptaline script.  Started taking it immediately.  Now, I'm getting my daily visit from the beast after around 4 hours of sleep each night. I'm a man on a mission to get an official diagnosis from a neurologist.  I have an appointment with my Primary Care doc on Monday, and I'm going to ask for a referral.

My goal is to get a script for subcutaneous sumatriptan for a 'mobile' abortive, an oxygen rig at home (Luckily, I work .5 miles from my house, and my boss is a very understanding guy.  He wouldn't even ask questions if I suddenly bolted out of the office to run home.), and to start experimenting with phophylaxis to see if I can find something that works.  Hopefully, this episode with spontaneously abort and I'll have another five years of freedom, but as we all know, the beast is unpredictable.

I look forward to having someplace to come and vent about this monster.

Welcome Steve!

It sounds like you are on the right path.....get that official diagnosis from a neurologist. When you do, you'll find that O2 is your best friend. It's not just for home use, I carry a tank every where in my vehicle. I only use triptans when I can't get to my tank.....like on airplanes.....you get the picture.  ;)

Hey Steve, sounds like you are ON it - doing the research and cooking up a good plan. Excellent.

Your abortive strategy of O2 and imitrex injection is a common and very effective one of course, and also happens to be mine, with O2 as my first line abortive, imitrex as a backup.

Just keep in mind that O2 pretty much has to be administered right at the onset of an attack, so there may not be time to even get that .5 mile home for it.

You've clearly been investigating all this aplenty, so forgive me if you've already seen this particular stuff, but the oxygen info link on the left of this webpage is critical info for many of us, and it's worth noting that the proper mask and regulator very well may have to be mail ordered, so it's good to jump on that immediately.

Then there's the imitrex tip that has saved me and many many others:
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For prophylaxis there are several drugs you could try, all toxic, all with side effects, or you could just cut the BS and try injesting a non toxic mushroom (if you can get it) that is showing real promise for being very very effective, even shutting down entire cycles for some.

Here's the recent Newsweek article covering it (specifically in regard to CH!!):

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It appears to me that you have the makings of a champion beast fighter/killer.  8-)

The guys are right about the 02 to abort. But when you see a neuro you also want to discuss preventatives. my husband uses lithium, others use verapamil or a combo of the two. Still others use various meds, depending on what else they have going on medically.

Lots to learn here, welcome.

i live near dayton, kinda

Hey Steve,

Welcome aboard and sorry the beast has returned. 

We're all wired differently, and different medications have varying levels of effectiveness on each of us with no two exactly the same.  Having said that, the odds on favorite and most effective regimen of intervention for most CH'ers involves a three-pronged strategy laid out by Dr. Todd Rozen, MD, FAAN, while he was practicing neurology at Michigan Headache & Neurological Institute in Ann Arbor, MI.

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This three-pronged strategy involves:

(1) A prednisone taper as a transitional therapy for a week to 10 days.  Under ideal conditions, the prednisone taper will abort the bout, but usually, it provides the time and pain prevention needed while titrating the dosage up on a preventative.

(2) A preventative regimen, usually verapamil, that's taken by titrating the dosage a little higher each day up to a preset limit until the prednisone taper is complete

(3) An abortive strategy with prescriptions for oxygen therapy with a non-rebreathing mask and flow rate of 15 liters/minute and triptans like sumatriptan injections or nasal spray to catch any burn through CH attacks. (Oxygen therapy at 25 liters/minute and much higher is even more effective with shorter abort times than 15 liters/minute).

After the prednisone taper is complete and the verapamil has had an opportunity to prevent all on it's own, the variations start if there's been no response to the verapamil dosage or the burn through CH attacks are still too frequent.

The National Guideline Clearing House lists the following standards of care for treating cluster headache with the same methods of intervention listed above:

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This came from the European Federation of Neurological Societies (EFNS).  Several of us have met with many of the neurologists that developed this standard of care as well as Dr. Rozen, so there's good agreement among the top neurologists here in the US and in Europe on the most effective methods of intervention for cluster headache. 

All of these neurologists see CH'ers on a daily/routine basis so have more experience treating our disorder than most.

The cluster headache survey many of us took in 2008 lists these same medications as the most effective.  There were 1134 complete surveys so that adds up to a 95% confidence level in these results.

If you think your doc will agree to write you a script for oxygen therapy, you may want to download and print the following link on "How to Obtain a Properly Written Rx for Oxygen Therapy" and take it along when you ask for the Rx:

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Hope this helps,

Take care,

V/R, Batch

Thanks for the responses and info folks!  Very helpful.


bejeeber wrote on May 22^nd, 2010 at 8:57pm:

For prophylaxis there are several drugs you could try, all toxic, all with side effects, or you could just cut the BS and try injesting a non toxic mushroom (if you can get it) that is showing real promise for being very very effective, even shutting down entire cycles for some. Here's the recent Newsweek article covering it (specifically in regard to CH!!): START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE It appears to me that you have the makings of a champion beast fighter/killer.  8-)

I am already doing a little poking around about this.  Been reading over at clusterbusters.  Thanks for the additional info!

Welocme to the board you've already gotten reams of great advice. The clusterbusters treatment has been turning out some awesome success stories. Seems to be especially effective on the people who were not responding to any of the traditional treatments.

Pay attention to the info Batch posts....they can run a bit long but he knows what he's talking about! ;) Hoping you can catch some relief soon.

Joe

I started taking melatonin two nights ago in addition to my amitryptaline.  Interesting development....

The first night on melatonin, I woke up twice, at my usual times, only my headaches were not as severe as normal... they were maybe a kip5... usually I'm about a 7-8.  Then all day saturday (yesterday) I had mild shadows.

Last night, I woke up at my normal times, but I did not have a headache either time.  I opened my eyes and braced myself for it, then... nothing.

I know one night is only one night, but it was nice not to have to do the dance for 45 minutes twice!  I just went back to sleep.  Shadows are much more mild today.

We'll see what happens tonight.  I hope my doc isn't going to give me too much grief about this very specific oxygen prescription business.

Also, thanks Batch for the helpful oxygen info!  Now I feel a lot more confident about asking my doc for the script! 

UPDATE!

Saw my Primary Care Doc today.  Got myself an official diagnosis, a referral to a local neurologist/headache specialist and thanks to Batch, a script for Oxygen.

Batch, my doctor told me he was willing to write the script for Oxygen, but that he wasn't sure of the specifications since he had never prescribed it.  I handed him the documentation you provided and he wrote it on the spot.  Thanks so much!   ;D

I LOVE this!

The term "yeehaw!" promptly comes to mind.  :)

-johnny- wrote on May 22^nd, 2010 at 9:49pm:

i live near dayton, kinda

Oops, totally missed this post.  Nice to meet a fellow Southern Ohio CH'er!

Also, this is me (I'm the guy, and that's my friend Kelsi)...

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Got hit pretty hard last night, at least from a duration standpoint. Two kip7's, 1 hour, 10 minutes each.  It was my own fault, I broke the rules of the delicate balance I had going for a few days.  Total of 3 hours sleep.  Sitting at work, shadows... drinking coffee.

:-/

On the up side, this has been a great little motivator to get me on filling my Oxygen script!   :P

You guys will soon find out that I love to talk.  I'm trying to keep it in one thread for now so as not to irritate anyone.  :)

Anywho... called my normal pharmacy at lunch today, and they were able to provide me with the phone number of a local home medical equipment company that provides oxygen products.  Spoke with a lady named Virginia, told her what I needed, gave her my insurance info and we're off to the races!

Cross your fingers for me.   :)

Oh post to your hearts content son, you aren't going to annoy any of us! Glad Batch's info paid off for you, he's kind of our 02 guru.

The time it's taking you to abort your attacks is long! Just want to make sure we're doing it as efficiently as possible. Non Re Breather Mask, High flow rate, at least 15 LPM, and start that 02 as soon as you feel the beasty scratching at the door.  Hoping we can shorten it a bit for you, those hour long rides hurt!

Tell that cute little partner of yours we said bless her heart for being a supporter to you. Sometimes I think it's just as hard on the supporters helplessly watching as it is on us!

Joe

Guiseppi wrote on May 25^th, 2010 at 6:11pm:

Oh post to your hearts content son, you aren't going to annoy any of us! Glad Batch's info paid off for you, he's kind of our 02 guru. The time it's taking you to abort your attacks is long! Just want to make sure we're doing it as efficiently as possible. Non Re Breather Mask, High flow rate, at least 15 LPM, and start that 02 as soon as you feel the beasty scratching at the door.  Hoping we can shorten it a bit for you, those hour long rides hurt! Tell that cute little partner of yours we said bless her heart for being a supporter to you. Sometimes I think it's just as hard on the supporters helplessly watching as it is on us! Joe

Hello again Joe,

At present, I am without an abortive.  I'm waiting on a local home medical supply company to generate paperwork and communicate with my doctor's office and insurance company to get the O2 business moving along.

On the up side, the medical supply company I found is locally owned and specializes in Oxygen equipment.  When I said 'as needed for cluster headache' the receptionist immediately transferred me to a lady named Virginia that was very friendly and didn't act dumbfounded by what I was saying.

I very calmly explained to her that the monster that lives under my bed is scared of High-flow Oxygen, and that anything she could do to expedite the process would be greatly appreciated.

My doctor did say 'in the meantime, you can call me directly and I'll meet you at the office to administer the Oxygen there.'

I politely said 'ok, thanks, I really appreciate that.'  ...of course, knowing full well that a 15 minute drive to the dr. office isn't happening, and would be fruitless anyway.

I enjoyed 3 pain-limited days up until last night (nothing above a 2).  It was my own damn fault the beast came to visit me last night.  I should know better!  Trouble is, when I start feeling better, I start reverting to my normal behavior.  I'm learning that in cycle, there is no old steve, only new steve.

With regard to the 'cute little partner,' unfortunately, she is not.... just a friend.  She's not aware of my condition since I only met her about 2 years ago during a 5 year remission.  I haven't seen her in this cycle yet.

Anyway, thanks again for your concern... and responding to my posts.  It might be a little silly, but it makes me feel better.   :)

djphrenzy wrote on May 25^th, 2010 at 1:56am:

-johnny- wrote on May 22nd, 2010 at 9:49pm: i live near dayton, kinda Oops, totally missed this post.  Nice to meet a fellow Southern Ohio CH'er!

lemme know if you need anything

Thanks Johnny!

No big hits last night.  Woke up three times to maybe a k1 or k2 each time, braced... waited a few minutes... nothing, went back to sleep.  I'd say I got a good 8 hours last night between midnight and 9am.  At least for the moment, if i behave myself, the melatonin + amitryptaline seem to manage it ok.

That's great. It's amazing what something as simple as 8 hours of sleep cn do to your outlook on life! :)

Joe

Couldn't agree more, yesterday, on 3 hours of mediocre sleep, I was feeling pretty down.  Feeling better today.  :)

Also, got a call from the neurologist's office today.  Have an appointment for July 16.  That was their first opening, but as I understand, this guy is THE GUY to see for CH/Migraine in this area.  I did a little poking around, and he did his residency at Johns Hopkins and Med school at Mount Sinai, so I'm optimistic.

Just one more suggestion....find out if they have a number you can call to check for daily cancellations. Sometimes they'll let people slide into a vacant slot when someone else cancels their appointment at the last second.

Joe