My name is Bud and I have suffered from cluster headaches for just over 3 years now..... but I was only diagnosed 5 months ago :(

My cycles come about every 4 months and last for 10-12 days of higher intensity and 4-6 weeks of intermittant lower intensity headaches. The CHs start (always while sleeping) with severe eye pain and almost immediate transition to level 8-10 right side pain. That can go unabated 24 hours per day for 2-4 days and there's some evidence that heavy painkillers extend the duration. After 2-4 days the pain level decreases to the 5-6 level and the CHs come and go during the day/night. Then there is gradual diminishing of intensity, frequency, and duration.

When a cycle started 5 months ago my Doc sent me immediately to a Neurologist who specializes in headaches and he deduced from my history that I was likely suffering from CHs. He put me on Prednisone (60mg-60-50-50-40 etc daily for 12 days) and on day 3 of the Prednisone (day 4 from onset) the cycle was broken and I had only intermittant low-mid intensity headaches from then on. I am on Verapamil 120mg as a preventive.

12 days ago another cycle started but it did so with 5-6 intensity and occasional higher bursts of shorter duration. I did the Prednisone thing again but I don't see that it had any effect. This cycle was much easier to take and I have to credit the Verapamil.

The Neurologist has now given me a prescription for Imitrex 50mg with instructions to take 1 at 1st pain onset and another 12 hours later. He says that MAY kick the pain level downward. I'll also do the Prednisone thing again.

An anecdotal OMG: 20 months ago I had a cycle start (but I/we didn't know about CHs yet) with incredible intensity. My Doc (she's a Harvard Medical School grad who's served our rural Washington State communities for 25 years now) put me through MRIs that 1st day and the Radiologist saw "something". A brain blood vessal Catscan followed that same day and I was referred to a Neurosurgeon. The next day I had an Angiogram of the left side of my brain which confirmed an aneurysm. Given that I'm still vertical I can actually thank the CHs for perhaps saving my life since we wouldn't have discovered the aneurysm otherwise.

Anyhow, happy to have found this forum.

Hi Bud,  and welcome  to your second family as most of us think of this place.
You say you saw a great Neurologist and yet he only has you on a very low dose of Verapamil.  

Also, you said that the headaches go unabated for 24 hours for 2 to 4 days?    I am sure that you meant that you have a headache...it subsides for a while and then ramps back up.  Right?   it only seems like it's a 24 hr. hour headache.   Cluster headaches generally last from 15 mins. to 3 hours.

Prednisone can be a life-saver when we need a break from the pain but should not be used for any length of time.


Quote:

has now given me a prescription for Imitrex 50mg

This would indicate to me that he has given you tablets.  In most of our experiences...the tabs are useless.  They take wayyyy too long to take effect.  This neuro should have known that and prescribed either the Imitrex nasel spray (10 to 15 mins to abort)   or the injectables(2 to 6 mins. to abort.)

I used to live in Washinton state.  For two years I lived in Spokane but I now live in Northern Calif.   If you should need to talk one on one, I will call you and maybe I can help with something.  Just hit that pm button beneath my name.

If not, that's o.k. too.   But I am so glad you came looking for answers and support, because if you'll find it anywhere....this is the place.


again...welcome and if you stick around you will never be alone in this condition again.  We all know what it's like.

Linda Howell

Hey Bud,

Welcome aboard.  Your episodic cluster headache attacks sound typical and three years for a good diagnosis is almost average...  It took me nearly 4 years to get a a diagnosis.  

Where in Washington do you live?  I grew up in Tracyton, halfway between Bremerton and Silverdale, WA.

You should get a prescription for oxygen therapy. Oxygen works well for most cluster headache sufferers as an abortive if used properly and is a lot less expensive than imitrex.  If you can get a prescription it should read like the following:

"Oxygen Therapy: 100% O2 with a non-rebreather mask at 12 to 15 liters/minute AS NEEDED for cluster headaches."

The Rx covers the bases with both the medical insurance companies and also the home oxygen delivery folks.  If there's no mention of cluster headaches, most medical insurance companies will assume a COPD disorder and require an additional written statement from your doctor that provides your oxygen saturation levels.  Dumb but that's the way they do it.  The NRB oxygen mask and 12-15 liter/minute flow rate will ensure your home oxygen delivery folks give you a regulator capable of the needed flow rate and a proper mask instead of a nasal canula and a regulator that will only provide up to 8 liters/minute.

Pred tapers are great as a transition therapy and occasional cycle buster, but that's as far as they go.  Prednisone is the worlds best worst drug.  A great anti-inflammatory, but the side effects can be and usually are bad if taken for much more than a few weeks.

It sounds like you've got a good doc so you may be able to show him the latest strategy in treating cluster headache sufferers.  Print and take or email the following links to him for your next visit:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This first link provides a comprehensive treatment strategy with an abortive therapy, a transitional therapy, and a preventive therapy.  The next two links provide some great insights on the benefits of oxygen therapy.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The neurologists at the Michigan Headache & Neurological Institute (MHNI) see hundreds of cluster headache sufferers every year so have a lot more current first hand experience than most neurologists.  I've met with Dr. Rozen there in Ann Arbor, MI and they don't come any better.

The good news is oxygen therapy works exceptionally well for most of us if used properly at a high enough flow rate.  It will give you back your life once you master its use and gain the upper hand over the beast.

Take care,

V/R, Batch

Hi Bud!  Welcome to your 2nd home.  Linda and Pete have given you some great advice.  

It took me 12 years to figure out what I had.  Then I found this place.  What a difference it's made in my life.

I want to 2nd the Oxygen recommendation.  It works well for me.  I keep my Imitrex injections as backup for the rare occations O2 fails.

Verapamil works well for me too.  I use the regular release formulation instead of the extended release.  Once I got up to 400mg, 90% of my HA were gone.

You need annual EKGs with Verapamil.  Extended use can affect heart rythm for some.  The good news is that once you stop taking it the heart rythm returns to normal so the condition isn't permenant.  

Well, let us know how we can help.

-Dennis-

Hey Bud
Welcome!  I guess I have a question for you.  I had an aneurysm spotted as well several years ago.  Doc told me it was minor and not to worry.  Did you undergo any procedure?  I am interested to hear what they said and did.

Hi Bud,
You've already been given some great advice on meds. I'll add to it by telling you about the things you don't need a prescription for. Energy drinks with 1000mg Taurine and caffiene can work as an abortive if you chug one down at the first sign of an attack. It also helps with shadows - that low level pain around your temple and checkbone between attacks. Also Melatonin, 9-12mg at night can help prevent attacks that hit during REM sleep.

BTW, I was diagnosed seven years after my first cycle of CH. Many of us have gone undiagnosed and misdiagnosed for a long time. It's one more thing we have in common.

~Kris

Thanks for the welcome all.

kev - my aneurysm is presently at 7mm in size. That's large enough to worry about, but not critical danger. Unfortunately mine is at the junction of 2 arteries and can't be dealt with using a coil, which is not much more invasive or dangerous than an Angiogram. That procedure (only?) carries a 5% or so risk of major damage - like a stroke or death lol. I would need to have hands-on exposed brain surgery to clip the damned thing and that carries more frequent high risks and of course much longer recovery time.

My Doc got my case accepted by U. of Washington Neurosurgery so I'm in very good hands albeit 90 miles away and a mountain range between us so I hope I don't have to get there in the winter :)

My Neurosurgeon feels I should accept the conservative risk - 7-10%  that it might leak in a 12 month period, less that it would burst  -  but he'd do the surgery if I decide to go that route. Since my BP is excellent and I'm analytical by nature I'm opting for the non invasive approach right now. I don't allow myself even 1 minute of worrying about it - I'm prolly gonna die from my Chevy Tracker going over a cliff on the ranger roads at 7,000 feet looking for that perfect photograph  :)

If the thing grows much larger then the decision will have to be different. I get an Angiogram every 9 months.

God bless Medicare! I'm 66 and with the supplemental medical insurance policy (which I pay $156 a month for) the $12,000 Angiogram only costs me gasoline and a hotel room for 1 night in Seattle :)

Linda - prior to  intervention in EVERY past cycle during the first 48-72 hours my headache was nonstop. The intensity rises and falls - between 5 and 9/10 - but there is always some pain. By day 3 sleep deprivation on top of that has driven me near the point of insanity. I am SO grateful to finally have a diagnosis, and this first new cycle while under treatment has been SOOO much easier to cope with. Lower intensity, shorter duration of each headache. I was able to live normally about 75% of the time and sleep issues were measured in 2-5 hour time frames.

Sorry you don't like my Neurologist, but I do and he seems to know quite a bit about my specific symptomology.

Thanks to all re the oxygen therapy suggestions. My Neurologist brought that up several times as a possible add-on, and since I have moderate COPD I wouldn't mind having it around as a refresher anyhow. I'll see if I can talk my Doc into it  :)

Batch - I'm in Cle Elum, on the eastern slopes of the Cascade Mountains. Moved over here from North Bend 4 years ago. Hot summers, snowed in winters, and glorious blue skies most the time.

My bride (of 44 years) and I are from NY - me Brooklyn and her The Bronx. Did the corporate transfer thing for 20 years - Philly, Seattle, Anchorage, Seattle, Columbia SC, and back here to stay :)