I think I may have registered for the board in the fall of 2003, which was my last cluster cycle. I consider myself lucky to only have endured 4 cycles in my entire life.

My name is Shane, from Saratoga Springs, Utah.
Demo/Geo - I am a 39yo male, a software developer by trade. Father of a family of 6 (almost 7). Ex-Military, educated.
Relevant Neuro Medical Hx - Have a fairly high pain tolerance. Have always dealt with ADHD, medicated for it with Adderall daily. I had a bad head injury at about the age of 6, a bump low on the back of the noggin resulting in LOC and a concussion, Same injury about age 14. I am totally colorblind, mono-chromacy.
Clusters - 1997, 1999, 2003, 2010. Always in the late fall or early Winter, Late September through December. Always last only 7-10 days (and for that I am fortunate).

Day 1: Friday, 10 December 2010, 11:58 PM.
It had started maybe 3-4 minutes earlier, but took untill then to break through to full waking consciousness, I instinctively checked the clock to see what time the gates of hell opened, this isn't my first rodeo. I got out of bed, and moved downstairs, not to wake my pregnant wife. This is something I know I must do alone. I instinctively start logging it, and this is how it goes:

+4 minutes - finished building, complete onset. Now at what I consider a 10/10 pain. Right side.
+7 Minutes - Excessive tearing of right eye. Sweating profusely, head and chest only.
+16 Minutes - Nausea, (never vomiting just nausea)
+23 Minutes - Right sinus discharge, pain starting to subside.
+25 minutes - Pain 2/10. Start toweling off.
+28 Minutes - exhausted, back in bed. 

Immediately fell asleep, woke up late around 0630 with a stiff neck. headache hung around untill noonish, 2/10, just a shadow. Saw an urgent care doc to get an imitrex injection kit.

Day 2: Saturday(Sunday)
12:13 am Sunday, I was expecting this one, and I'm better prepared for battle.
Im awake almost instantly. Quickly make my way downstairs, i know I have 3 minutes to get the injection going.
12:15 - Imitrex self injection, right thigh. Fully built out, pain at 10/10. Distraction comes in the form of Metallica at full volume in headphones, and menial tasks such as typing a log, and an old rubics cube.
12:18 - Imitrex side effects, God how I hate the additional feelings of heat, fever-chills, tremors, and loss of fine motor skills.
12:25 - Same symptoms have completely set in, nausea, sweats, tearing, sinus discharge. Add right sided face numbness.
12:29 - Relief sets in. Start toweling off, pain 1/10, face still numb, like dental Novocaine. Left with Imitrex side effects.
12:35 - Back to bed, did not fall asleep immediately due to the Imitrex side effects.

Day 3 -  Sunday -
Sceptically filled the RX for verapamil 240xl the doctor wrote on saturday, but hey Ill try it. I got plenty of mid-day sunlight and fresh air, and took some melatonin after dinner.

Woke up Monday Morning, Pain Free, No headache. Am I blessed? I'm cautiously optimistic about tonight. Did the verapamil work? Or the sunlight and melatonin resetting my biological clock?

Hi Shane and welcome back, sorry the beast came knocking again.


Quote:

I'm cautiously optimistic about tonight. Did the verapamil work? Or the sunlight and melatonin resetting my biological clock?

I'm betting on the combination of melatonin and verapamil helping you.

Sending PF vibes your way!

Welcome Shane. 7-10 day cycles...you truly are blessed. I was going to say that 02 would knock mine in 5-10 minutes, but if they are only going to last 10 days, then I am not sure that I would be bothered on getting it all set up.

Anyway, welcome and I hope they are over by this time next week.

Well, I will add that the first night, I was unprepared for it, and it kicked my buns. Most of the time was spent sitting in my office, doubled over, arms wrapped around my chest, chin on chest (seated fetal position?) rocking back and forth sobbing. I did put in the original post that from what I have observed in others, and in my life experiences, I have a fairly high pain threshold or tolerance.

Example: I dont find it odd that my nose has been broken 7 times in my life, and the last 2 times when it was broken by my sons head as we were roughhouseing, I packed it with gauze and set it myself. It actually looks better now than it used to!

Example: in 1992, I broke my right femur in South America. I got a helicopter ride to a boat 30 minutes later, with no medication. On the boat, 3 hours after the injury, it was manually reduced and splinted, and I received minimal morphine, to prepare me for the 9 hour ride on a military cargo plane to a real hospital for surgical setting. That was the worst pain I have ever experienced before my cluster episodes.

The episode I was talking about here, is sitting with a clean-ex in hand as the tears stream down my face involuntarily, there's still some hugging and rocking and plenty of sobbing involved, but I know for me the key is just waiting it out. The beast is going to have his way with me, and in the end, I will win, he will leave. I do whatever I can to find-a-happy-place, and the key is distraction.

I'm not here really to tell war stories, sorry if I got it started. I realize that pain is relative to the individual, but everyone describes cluster headaches as the worst pain you've ever experienced, a true 10/10. I thought a broken femur was 10/10 until I had clusters, when I figured out, it has an 11! =)

With a 7-10 day cycle you can probably cover the entire cycle using a prednisione taper. This will become an effective preventive much quicker than verapamil which can take that long to become effective.

And even with a short cycle like that I'd have oxygen on hand as killing of a CH in minutes is much better than waiting longer.

As to doing Rubik's cube whilst having a CH, how do you manage that? I've got one somewhere, so maybe I should give it a go, although I've one hand busy holding my oxygen mask.

The part where you mentioned how painful a CH is compared to a broken femur is a good example to tell others as to how painful a CH can be. However I'll try to avoid doing anything that might result in one as coping with CHs can be tough enough.

Day 4, Headache 3. Was simply too exhausted to log last night when it was said and done.
Onset: 23:33
Duration: +22 Minutes
Scale: 10
Distraction: Field strip and reassemble your service weapon (unloaded of course!). Metallica - Frantic

I had one PFN Sunday night. Changed nothing in prophylactic treatments, and it came back as strong as ever. Nothing ever seems to decrease the intensity, for me it always seems to wake me up when it reaches a 4-5, and continues to always build to a full 10.
Imitrex has shown to decrease duration, usually cutting duration in half if I hit it fast enough. So, going by that, this one would have been 45 minutes of full blown 10.

Back to the distractions thing: It was just an idea I had on saturday morning after waking and realizing what had happened friday night, and what I had in store for the next 10 consecutive nights. I am sometimes able to focus my hands doing something other than clutching my head or wrapped in fetal position. Maybe its just a phobia I have, I have to prove to myself I still have some fine motor skills. A rubiks cube was just one thing, I didn't actually complete, mostly because I couldn't see it well enough. Just something for my hands to do, something to hold.

I wouldn't recommend last nights distraction to anyone who has not been trained to do so. I have been trained, and the idea came to me, because in combat situations, the adrenaline makes you loose your fine motor skills, much in the way a CH+Imitrex does. So in the way I was trained to be able to clear a malfunctioning weapon in the dark in combat, this was a fine example of that training. I cannot say I completed it, but it gave my hands something to do and my mind something to focus on besides the pain. Focus is something I have been working on all my life, having a terrible case of adult ADHD and being a triathlete.

I would also add that distractions are just something to do besides watch the seconds slowly tick by, because that just makes 22 minutes seem like an eternity.

Exhaustion starting to affect my mood and focus at work.
Had one PFN sunday night. I hope it resolves soon. The best I can hope for is 3 more, but ya never know. Duration with the imitrex has been between 16 and 22 minutes. Always a full blown 10.

Hang tough my friend. They gotta leave sometime.
the bb
Hangin tough for ya. >:(

Wednesday = PFN! yay!
Is it too much to hope their done?
Fingers crossed!(and toes)(and eyes too, ow thats hurts)

Too much to hope for, its 90 minutes ahead of schedule instead.

10:55 - 5/10 - Im f'ing awake now. Wife sees me get out of bed this time.

10:56 - Imitrex 6mg SQ right thigh. Start that burn. deep breathes. Just keep breathing, Enjoy the Metallica.

10:58 - Imitrex feels like: my skin has been frozen and set on fire. Like pouring and splashing ice cold gasoline from head to toe, then tossing a match in the middle of my back. It burns, spreading upwards and down and outwards from the base of my skull.

11:04 - Sweating, nasal discharge, pain 10/10. Distraction not as effective as a few days ago.

11:15 Nausea. Pain easing back a little I think.

11:16 Yes, pain starts to fall off. 8/10 now

11:17 pain slowly dropping off, It seems like I can literally feel the Imitrex and the Headache doing battle. that burning sensation that started at the base of my skull and engulfed my whole head has replaced the pain of the headache. They battle for my attention with the Metallica.

11:21 Pain 3/10. Left me again is a pool of sweat, with the imitrex burning. not going back to bed yet, Pain keeps stabbing up to a 5 or 6 here and there.

11:24 back to be and try and sleep off the rest.

Thursday was Day 7, Headache 5.

Are you going to consider O2 if you don't end cycle in 10 days? And what am I missing? Have you tried O2 as recommended and it didn't work for you? If not, why not abort the pain as soon as possible. CHs do seem to increase the more they increase, if you know what I mean. Blessings. lance

btw: what were you field stripping?

I have not tried Oxygen. For me, if it is only 30 minutes a night for 10 nights max, every 7 years, its not worth the pain of an o2 setup yet.

Yes, If by Monday it is still happening I will consider O2. Dad is a cronic clusterhead, and we talked about oxygen Yesterday. He owns an oxygen concentrator thats only capable of 10Lpm flow, but he uses correctly with 10 minutes on, in a non-rebreather, as an abortive. He swears by it too.
Not that you guys here swearing by it wasnt enough, but my father swearing by O2 as an abortive convinced me.

btw - Glock Model 22, .40cal. You gotta love something you can wash in the dishwasher!

I might also add this morning that there are no residual effects like there has been all week. No shadows, No facial numbness, no problems with vision.

Shane Lawrence wrote on Dec 17^th, 2010 at 11:45am:

btw - Glock Model 22, .40cal. You gotta love something you can wash in the dishwasher!

Hmm, that's about all a Glock has going for it! ;)

Now a pistol based on the 1911 design, like one of the Para Ordnance models, makes a far superior pistol other than you wouldn't put it in the dishwasher.

Now I'll sit back and watch the Glock vs non-Glock battle take off.

It'll be almost like Ford vs Holden, although that's a simple one as Holdens are the best by far (how many non-Kiwi / Oz people are confused by this). All you need to do is look at the score from Mount Panorama (27-18).

What a vivid (and accurate) description of an attack.


Quote:

...Ford vs Holden...

Holden?  You gotta be kidding, right?  I mean, you wouldn't actually drive one of those things, would you?  ;D

I have a friend that lives out in W.A. and he comes to the states every couple of years to pick up a couple of Corvettes and ship them home.

Dan Epps wrote on Dec 17^th, 2010 at 7:22pm:

What a vivid (and accurate) description of an attack. Quote: ...Ford vs Holden... Holden?  You gotta be kidding, right?  I mean, you wouldn't actually drive one of those things, would you?  ;D

I do and I enjoy driving it too!

Mike NZ wrote on Dec 18^th, 2010 at 2:13pm:

Dan Epps wrote on Dec 17th, 2010 at 7:22pm: What a vivid (and accurate) description of an attack. Quote: ...Ford vs Holden... Holden?  You gotta be kidding, right?  I mean, you wouldn't actually drive one of those things, would you?  ;D I do and I enjoy driving it too!

Hope you know I'm just teasing.  BTW, I got a couple of mates down your way--one in Christchurch and one in Rotorua.

Btw, the Glock 22 in .40 is by far the the most popular side-arm issued to state police agencies in the U.S. Me, I'll take a Browning High Power in 9mm, heavily customized by a competent gunsmith, any day. Anything heavier than that beats up my wrists too much. Placement, placement, placement.

bonkers wrote on Dec 18^th, 2010 at 9:13pm:

Btw, the Glock 22 in .40 is by far the the most popular side-arm issued to state police agencies in the U.S. Me, I'll take a Browning High Power in 9mm, heavily customized by a competent gunsmith, any day. Anything heavier than that beats up my wrists too much. Placement, placement, placement.

As with many things, what really counts is what works best for you, be it from shooting targets on the range to preventing CHs.

A good gunsmith can work wonders, totally transforming a pistol, but no matter what they do if the person holding it doesn't know how to shoot then it won't help too much.

Yes I know you're just teasing Dan. I've actually owned 2 Fords too, so I appreciate both (to a degree).

Pain free since Thursday night. I am hesitant to say their done for this cycle, as I still get a few shadows or twinges hanging around.

Having spent my life around weapons of all types and sizes, the fact that it beats up your wrist to much is again, a personal preference. When somebody asks "I want a handgun, what should I get?" I always tell them 2 things:
1> Shoot the largest caliber you can handle comfortably. Yes, I know a desert eagle .50 looks like it could stop a mack truck, but can you put 3 rounds in 3 seconds on the paper?
2> More important that caliber is fit and balance for you. find something that fits your hands, and feels good and natural. Look at a Glock 22, then a Glock 27, then a Kahr CW40. Those all happen to be .40 cal, but you get the idea for fit and balance.

I got to agree on the Glock 27. Best back up weapon I ever used.

to bed at 9:30, reading untill lights out at 9:50

10:40: Awake. shadow looming, slowly building.

10:48: Still building, 6/10. Still in bed, start dancing. Time to get up, as the whimpering has awoken my wife who mistook it for the 3yo. Get up, start distractions and continue the dance. WTF, this is different.

10:58: still a 6-7. Have not hit the imitrex yet. WTF, this isnt normal for me. +18 minutes and not fully blossomed yet?

11:14: Secondary symptoms set in, Tearing of right eye, right sided runny nose. +34 minutes. Still dancing.

11:17: Naseua. Pain subsiding?

11:27 Pain free, still a heat-based shadow. Distractions terminated, Start toweling off. +47 minute duration.

Change in cycle? Last Headache was 16 December, went 10 nights without, thought I was done.
This one was different in the fact that It never got bad enough to make me want the Imitrex side effects over the headache, never reached that tipping point.
It is the first cluster headache Ive ever had that didnt build to a 10.
Duration of 47 minutes could just mean I didnt abort it.

If something continues after tonight I will have to move the log off the "getting to know you" board, as you know me by now!

Hopefully the cycle is winding down. Mine get less and less severe, and farther apart as my cycles end. I'd sure consider a look at 02, do the leg work now to get the prescription, locate a supplier and line up your gear. That way when the next cycle hits, you make a couple of phone calls and it's ready to go. Really has been a life saver for me.

And what Jimi said about the Glock.....carried it on and off duty for over 20 years, first the 9 then we moved to the .40. For a "Tupperware" piece, it's bullet proof!

Joe

Somethings defiantly changed.

03FEB2011
Intensity: 8/10
Onset:Before 11:24PM, built to an 8 before it woke me up because Im heavily medicated for flu
Duration:+24 mins @8
Distractions worked? yes, somewhat.
side affects: right side runny nose and congestion, nausea was short lived.

Time to ask my family doc for an O2 concentrator.

Hey Shane,

Unless it's the only thing available, an oxygen concentrator is not the way to go for your oxygen therapy.  You need gaseous oxygen in big cylinders like the M-size.  They hold 3995 liters of oxygen and are good for 20 to 25 aborts.  At three hits a day/24 hrs, you'll need at least three of the M-size oxygen cylinders for a one month supply.  If you have your own oxygen regulator and no medical insurance, the three cylinders will average $45 to $90/month depending on your location.  With insurance and 20% co-pay its' $18/month...

You're also going to need a good oxygen regulator with GCA-540 fittings to mate with the M-size oxygen cylinder and a good non-rebreathing oxygen mask like the O2PTIMASK™ kit available at the CH.com store at the left for $27.50.  I have two and they're great!

The absolute minimum flow rate for oxygen therapy is 15 liters/minute.  However, if you taking heavy hits at night as your last post indicates, the minimum flow rate you need is 25 liters/minute if not higher.

Only a few of home oxygen delivery companies carry regulators capable of 25 liters/minute but they do have them capable of 15 liters/minute.  Go for the highest flow rate they can provide.  Plan on buying your own regulator.  I'll send you a pm with some suggestions.

I use the InGage™ 0 to 60 liter/minute regulator from Flotec Inc.  They make two product lines capable of these flow rates and the prices run from $140 to $190.

Take care,

V/R, Batch

What Batch said! I went with a demand regulator, pricier but if you can afford it they are the cadillac..I abort in about 6-8 minutes.

Joe

Went to bed at normal time, was up at 2am, back to sleep at by 3:15.

5:24AM: Awakened abruptly by a building HA. WhiskeyTangoFoxtrot?
5:30 built to a 6, time to get out of bed and start the dance
5:35 in my place, headphones and music going. Built to an 8.
5:45 Right eye wont open. Right sinuses running.
5:51 subsides to 6. Nausea sets in. Right eye opens again.
5:53 subsides to a 3. Nausea gone.
5:55 HA 1-2. Towell off, start my daily farm chores lol.

Max Intensity 8, duration 31 minutes.

Yet another endorsement of oxygen here. I was at a restaurant yesterday, realised I was just about to get a CH, so I slipped outside, hyperventilated on oxygen and I was pain free in about 5 minutes. It really does work.

Also for night time hits people have been having sucess with melatonin, with typical doses around the 9mg mark.

Have you got a preventive, something like verapamil, lithium or topomax?

It's common to use a Pednisone taper while waiting for the Verapamil to start working. Pred. will abort a cycle in hours but you can't use it for long periods.

Your Verap dose is low. Suggest you print out this protocol and use it to discussion options with your doc.
==

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.