Been going through this BS for 2 years now.  I can't say I am happy to find out out it is cluster headaches but I am glad I am not alone.  I just had a visit with a doctor the other day and he prescribed me Verapamil.  Anyone use this at all? 

Anyway...I am a 34 year old male living in the state of Maine (USA).  Got a wife and a kid a two cats that I have been barley able to support these last couple of years due to the fact that I am lucky enough to work my own hours and since I started having these headaches I have not been that ambitious to work an 8 hour day on 1 hour of sleep most nights.  I have tried drinking and illegal drugs just to get through a night with no headaches.  Blackout borderline alcohol poisoning drunk is about the only way I have found to be sure of getting a nights rest (just makes for a crappy next day  :-/ ). 
  I look forward to giving some of remedies a go this week before I start hitting the prescribed medication. 
Thank you all for being here!  (though I am sure you would rather not be.  ;) )

Edit:  I know this may sound lame/dangerous but could I possibly try using those small bottles of oxygen for welding to give the oxygen bit a go on the cheap?  Talking about the 1.4oz ones from the hardware stores.   

Your oxygen idea won't work.  :-/ You need high flow 02, at least 15 LPM preferably upwards of 25 LPM, for 6-8 minutes to obtain relief. You'd need a hundred of those little ones to even get started.

Is your doctor opposed to 02?

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

Read this link, print out the supporting info and ask your doc to prescribe it. If he does not, he knows NOTHING about CH and you need to move on.

Verapamil is the most common first line prevent, so that's a good sign he knows at least  a little about CH. We go higher then most docs are used to, some as high as 960 mg  a day to get relief. DO NOT adjust the dosing without working with your doc, it's high horsepower stuff. It will take 10-14 days to have a beneficial effect, any chance you can talk your doc into a 10-14 day prednisone taper to buy you some pain free time while the verapamil takes effect? Prednisone will provide 100% relief for me, but it should be used only for short periods of time as it's hard on the body. I do an 80 mg to 0mg taper over a 14 day period to buy me time while my prevent, lithium, kicks in.

Since you're not opposed to illegal substances, read this link. They use un conventional non mainstream methods including mushrooms to abort cycles. They are turning out some pretty impressive results:

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

Sounds like with work being slow, money might be a bit tight. Pay attention to the oxygen link, the area where they discuss welding oxygen. It's cheaper then the medical stuff, but comes out of the same big tanks! Many on the board have used it for years. If you go the clusterbusters approach above, you will have to detox off all other meds, you'll really need the oxygen as an abortive then.

Melatonin is another over the counter med, a sleep aid, which helps many avoid the night time attacks. Start with 9 mg about 30 minutes before bedtime. Some go as high as 18 mg to get a nights sleep. Give it a few days. There are several different "types" of melatonin, read the box carefully, we've seen the best results with n-Acetyl-5-Methoxytryptamine
Finally, go to the meds section, the topic "123 pain free days and i think I know why". A simple vitamin/mineral/anti inflammatory regimen, all OTC, cheap, and providing relief for a lot of people. Worth a try.

Welcome to the board, start reading everything, an educated CH'er hurts a lot less.

Joe

Thanks for the response.

Shame about the little bottles bit.  I have a couple kicking around in my shop and I thought it might be a cheap way to give it a go before investing an something more costly.  My doctor did actually suggest oxygen straight away but decided to give the drugs a try first because of the cost.   We also briefly touched upon steroids but came to the conclusion that it would be a last resort for obvious reasons.
   I will probably try to avoid the illegal route for now....That may change the next time time I am up at 3am pacing around my living room.  I seem to open to about ANYTHING at that point.
  960mg of Verapamil!  :o  Damn the doctor was talking like 360 might be pushing it.  I should be starting with 120mg starting Friday so I will know better then how much I can/should take in a week.  The odd thing is that this Verapamil stuff supposedly lowers blood pressure as well.  I always found super heavy drinking for me always raises my blood pressure to scary levels the next day.  And those are the nights I generally sleep through the night.  But maybe it is all unrelated.
  As to the melatonin...I actually have a bottle of Spring Vally brand kicking about that I am starting with tonight.

Thanks for the fast reply.

Joe has given you some great advice!

I'm another person who uses oxygen to abort my CHs and I can do so in an average of about 6 minutes. Even paying for it myself it was not just cheap, the ability to be pain free so quick is priceless.

I too use verapamil, with 480mg being the magic number for me when in cycle.

It is very common to use a short course of the steroid prednisione as a transitional preventive whilst a longer term preventive like verapamil builds up. Typically this will start at about 60mg a day and drop over the course of about two weeks to nothing. It can be very effective for this time period but not for long term use as there can be side effects.

Also for most people with CH, alcohol is a trigger so it has to be avoided whilst in cycle. There are a few "lucky" people, including myself, who aren't.

Keep reading and asking questions. There are people here with decades of experience of having CHs.

  I have some family members that use gas for welding.  I will try hitting them up for a little info on cost and availability.
  Yeah the drinking thing for me is very hit or miss.  If I feel even the slightest twinge of an ache I usually don't bother.  And if I do I have to hit it fast and hard.  If I go slow I get that one drink in and no matter what time of the day it is I will get floored by the pain.  Then again I tried about everything I could think of to get rid of this before I knew what I was dealing with.  Hell last year I even demanded my dentist yank an innocent tooth because I was damn sure it was the root of all the pain.

One of the biggest temptations of new Cluster folks is to jump from this fix to the next one, give it a couple of weeks and move on. It's just not a disorder which responds well to this approach. It takes a doc's skill plus patience to work out a treatment program which works--and may take some weeks/months to work out. One treatment approach for all is not the pattern with us.

There is a hint in your message that your doc is open to receiving med information about Cluster. Suggest you print out the following and share with him.
---
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.
===
ditto with the PDF file, below.
===
Learning as much as you can will give you confidence and hope so suggest you exploe the buttons, left, starting with the OUCH site and look at----


A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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 Search under "cluster headache"

---

Jeremiah wrote on Jun 29^th, 2011 at 10:23am:

....last year I even demanded my dentist yank an innocent tooth because I was damn sure it was the root of all the pain.

That's a very common behavior! I know I had a couple teeth yanked.  :o

FYI about the illegal thing - a newer busting agent that some CH'ers are having success with as a preventative is Rivea Corymbosa seeds (often referred to as RC) and they are legal to mail order and possess.

Guiseppi wrote on Jun 28^th, 2011 at 11:21pm:

Your oxygen idea won't work.  :-/ You need high flow 02, at least 15 LPM preferably upwards of 25 LPM, for 6-8 minutes to obtain relief. You'd need a hundred of those little ones to even get started.

LOL!  Yeah you are right.  30 minutes ago I just detached the MAPP gas and tried huffing the Oxygen bottle by sticking the torch in my mouth and plugging my nose. ::)  Oh the retarded lengths I will go to when the pain hits even surprises myself after the fact.  Seems to be passing now and I guess it beats punching myself in the head.  But yeah come Monday I think I am going to look at getting some O2 from a welding supply company.  Can you link me to a thread about rigging your own ghetto mask for such an setup?  I have an old gas mask from the 80's when my old man was a cop and a 3M partial mask from my boat building days that I could use.  So if there is a safe way of rigging it up to draw O2 into the mask while allowing a little air to come in I can probably do it.

Go to Medications, Treatments and Therapy and click on the thread: Welder's O2...detailed instructions. That should help. lance