Not much of a forum person but going to give this a shot.  Been a Cluster Head for about 10 years and have only realized what these attacks actually are within the last 4 years.  I will can honestly say that I would not even wish this pain on my worst enemy.  My attacks have been cycling on and off every 2 years, and has been in the winter to spring transition period.  I will have days that an episode will last 2 hours and then seem to make my head hurt the rest of the day as though it was bruised in some way.  (hard to explain)  I do have shadows constantly reminding me that they are still here and that they WILL be returning.  Mainly my episodes that happen during the daytime hours will last an hour and for whatever reason will happen at 10:30am and usually last an hour.  90% of the episode are during the night time.  EVERY 2 HOURS!  They will last 30 minuets usually and have had some last longer but not as common.  My CH's are on the left side.  Ive never had them swap from side to side as Ive read that can happen.  My sinus cavity on the left will close and my left eye will swell and water up.  My neck is sore after the episode from straining it in attempts to relieve the pain somehow.  I am in an active period again after a 2 year break.  I am now, again, to the point of being fearful of going to sleep due to know all to well what is coming for the rest of the night.  Married, 5 children, 3 Grand kids and they are all aware of these episodes.  Employed, but cannot afford the insurance, so I push through this with nothing but hope that it will all go away again soon.  Well, there is the shart version of who I am I guess.
  Wish all of you PAIN FREE REST and shadowless days.

Welcome to the board Genesis. Were you diagnosed with CH after the appropriate work ups to eliminate other, more sinister afflictions? I only ask because we live in constant fear of helping people alleviate pain...only to find out they were suffering from something more serious. And by masking their pain, we've made things worse! :-/

With that being said,  I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH! For someone like yourself, without insurance, it's the best avenue to go...literally pennies a day.

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope………

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. And even without insurance it's a very inexpensive medication. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen. For people without medical coverage this is a great avenue. many on this board have used welding 02 for years.:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these. You suffer a lot from nite time attacks, consider melatonin. An OTC sleep aid you can buy at any whole foods, vitamin store or pharmacy. Start with 9 mg about 30 minutes before bedtime. Some have to go as high as 18 mg to get relief. Give it a few days. Many can avoid the night time wake up hits using melatonin. There was a thread awhile back that went into the differences between types of melatonin.

It was generally agreed that the "good stuff" is

n-Acetyl-5-Methoxytryptamine.

Some people take a combo of both the immediate release (to get to sleep right away) and the time-release (to stay asleep).


Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

By the way, where are you from? A lot of our info is area specific, UK vs. the US etc.  ;)

Joe

Located in Denver, CO. USA....
Yes was diagnosed about 4 years ago.  Went through all the tests/scans/blood work/CT's and was seeing a specialist (had insurance at the time).  They gave me CO2 and that didnt really work at all for me, then was given a sub-lingual med that was a good abortive med but was a bad trigger for rebound CH's.  Then they tried Verapimil and worked within 2 weeks.  However, since then Ive lost the insurance.  Trying to get the money to go back to get another script for the Verapimil in the hopes that it will once again do the trick for me.  I hope it does as Im wearing my living room carpet down to the threads from the pacing in the living room.  Seems like I have 10 miles on it in the last few months.

Then DEFINITELY give the D-3 regimen a shot. It's been a miracle for so many, worth a shot!!!

Joe

Quote:

They gave me CO2 and that didnt really work at al

Hey there, and hope you meant O2? As I am sure you did, please know we hear this a lot, but it usually means the O2 was administered in a way that does not help any of us. When used properly, even by those who say I tried that and it didn't work, we find it is the #1 "don't leave home without it" remedy. How were you given it?

As for every two hours, I also experienced that for many years. I learned to sleep anyway, in between hits, and was prepared for each hit with a tank by my bedside. Very rarely did I have to use imitrex or Migranal. God bless. lance

Since Verap. has proven effective, getting back on it would both save money over using abortives and give much improved quality of life.

Trust you are seeing a doc. Print following and share wiwth the 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.

Caffeine helps people too as an abortive. Welcome!

And after I asked you where you were from I noticed your post..........Hello from Denver....sheesh...what little I ever had I'm losing!!!! :D

Joe

Ooops, yeah....I meant O2.  CO2 wouldnt have been a verry good treatment.
Was given it by nasal cannula.  As for the amount per dose I cant remember that but she (the doc) did say that if I needed to in crease the time or amount I could.

Hey there, and hope you meant O2? As I am sure you did, please know we hear this a lot, but it usually means the O2 was administered in a way that does not help any of us. When used properly, even by those who say I tried that and it didn't work, we find it is the #1 "don't leave home without it" remedy. How were you given it?

As for every two hours, I also experienced that for many years. I learned to sleep anyway, in between hits, and was prepared for each hit with a tank by my bedside. Very rarely did I have to use imitrex or Migranal. God bless. lance[/quote]

Genisis wrote on May 25^th, 2013 at 5:18am:

Ooops, yeah....I meant O2.  CO2 wouldnt have been a verry good treatment. Was given it by nasal cannula.  As for the amount per dose I cant remember that but she (the doc) did say that if I needed to in crease the time or amount I could.

The nasal cannula part almost certainly explains why it didn't work too well. You need to use a non-rebreather mask and a much higher flow rate than is possible with nasal cannula.

For lots of info about using oxygen to kill CHs read up about it on the oxygen page - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

What Mike said. The keys to making oxygen work are 100% oxygen to the lungs, at a rate to support hyper ventilation, started at the first sign of an attack. Nasal Cabulas are worthless, re breather masks are almost as bad. I use a demand valve, the most common set up is a high flow regulator, at least 15 LPM preferably 25 LPM or higher, with a Non Re Breather Mask.

JOe