Hello to all of you. I'm Steven (26) from Brooklyn, NY. Here's my story and thanks for listening.

In 2005, I was living in Miami, FL and awoke at 5:00 am from the excruciating pain in the left side of my head. I was 22 years old. Two days later it happened again. The pain lasted about 45 minutes each time.

I went to see a neurologist and was diagnosed with CH. I had an MRI of the brain performed and nothing unusual was found.

The headaches would come mostly in the early hours of the morning and awake me from my sleep. Then, they started to come in the middle of the day and the evenings. They always lasted the same amount of time and didn't seem to follow any particular pattern. They would come quick, always on the left side, and leave just as they came, abrubtly. I don't have to explain to you how painful they were.

I was taking a steroid, daily, until the cluster was over (about 6 weeks). And during attacks, I would use Zomig nasal sprays, which worked within 10 minutes.

From then until 3 weeks ago (about 4 years), at the slightest tingle of a headache I feared the demon was back. My worst fear came back to life when I was waiting in the car for my wife (newly married) and cluster number 2 started. Instantly, I knew it was CH. Research and my neurologist advised me they could come back, in 1 year, 3 years, 10 years, maybe never.

I went to my PCP and she didn't think it was CH - she said it was simply migraines and didn't see any reason to see a neurologist. However, she did prescribe me Zomig nasal spray because they worked previously and I had no known side effects.

This time around, the Zomig did nothing for me. I decided to go see a neurologist anyway and was diagnosed a second time with CH. I have been placed on Verapamil (steroids) and was prescribed Imitrex injections, which were very effective (5 minutes). I went through 4 injections in 3 days and was denied by my insurance company for anymore. They did, however, approve the tablet form. But the tablets barely work, if at all. With the injections I felt secure, but now I feel very vulnerable again. I will continue my battle with the insurance company tomorrow morning.

I'm getting the headaches in the evenings, during the day, and a few times in the middle of the night. There is no pattern. I even had almost 3 full consecutive PF days.

What helps me now is knowing it can be worse. I have read many posts on this site and see that many suffer every year, for many years. And have attacks up to 6 times per day, at 2 hours per attack. I can't imagine it being worse than what I already feel.

My heart and compassion truly goes out to all of you, especially the supporters who don't have CH. My wife was in tears next to me during my last late-night attack.

Again, thanks for listening. And thanks for welcoming me to the community.

I look forward to sharing with all of you,
Steve

Hi Steve. Always sad to see everyone misdiagnosed and unprescribed.  As you know most people here swear by oxygen, and some of us by energy drinks/caffeine etc. 

I have found that the clusterbusters.com techniques have been working very well for me and when done correctly have negated the need for all other meds.  Just my experience over the last year and a half.  It is very promising, another weapon perhaps in the cluster battle.

Good luck daddy-o!

--Shaggy

Glad you found us and that you have a doc who has some awareness!

Sending an article to give you some basic understanding about Cluster:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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But you mention Verapamil as being a steriod. It's not but, rather, a type of med used for blood pressure.
Many use the steriod for 10-days at the start of a CH cycle because it will break the attacks within a couple of days.

The Verapamil is started at the same time and is continued for a few weeks after your last attack. It serves to reduce the intensity or even prevent attacks--an old workhorse for us. The following is some fundamental info. on using it, the procedure being well established with many CH folks.
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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).
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And, this form of Verap. works best for many:

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.
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IF you don't has talked about this information, you may wish to print this material out to use as a discussion tool.
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Hope will continue to share your experiences and questions with us.

The zomig: there are several meds in the group which you can try. Not uncommon for a med to stop working for us and then we have to start seeking something new. But you have a number of choices:

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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In addition to the helpful info you've already received here, here's something VERY IMPORTANT to know about your imitrex use.

You can at least double the amount of imitrex injections available to you for aborting CH's (if you can get more injections prescribed) by following this tip, as so many of us here do:
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Of course you'll want to be fighting this beast back with other methods also, and the newer method of O2 use is hugely popular around here for good reason:
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This sort of info supplied so far can potentially revolutionize your CH experience, and just really help you get things under control much better. Glad you're researching into it, because as you've seen you absolutely can not just go along with what any doctor advises. Good luck finding one that routinely prescribes hi flow O2 for instance, and ignoramus doctor idiots routinely prescribe the ineffective imitrex pill form for CH, handing out the worst pain known to mankind to their patients by the bushel full.

I started getting clusters at age 22 also. No guarantees, but commonly enough the episodes spread out over the years so they start coming around less and less frequently - could happen to you too.  :)

Thank you to all of you for all your information and support.

I had trouble getting more injections - the insurance wouldn't pay for them. So I was given the pill-form which didn't work as fast, so I started crushing them up and that definitely helped them kick in faster.

I bought Red Bulls but didn't get a chance to try them during an attack.  But in case I get another cluster I will definitely keep it mind.

I'm very lucky to have ended my 2nd cycle.  It lasted about 4 weeks this time around.

My heart goes out to all the CH sufferers out there.  I support you!!!!  And this website is great by the way.

Steven in BK

Welcome Steve,

Bejeeber give you a great link to the information on 02 therary for CH's. I can abort an attack within 5-10 mins using a flow rate of 15 lpm.


Lefty

Welcome steve,

Just wanted to welcome you. Im a clusterhead too.

Coach Bill

Your doctor can communicate with the insurance co. to ask for injection Imitrex based on the lack of effectiveness of the pill. This kind of action regularly required by our members.

Another way of working with Zomig pills when you are on the road without access to O2, providing that your hits come at very regular times during the day (they do for many of us), is to take one 45 min to an hour before the next hit (2.5 mg work for 2-3 hours in my experience). In this case you give it enough time to take effect and you can actually manage to preempt a hit completely. Often works for me, sometimes doesnt.

If you miss your "slot", as Steven suggests, crushing them up gets them moving faster than the whole pill. Additionally, I kick start them with a double espresso or energy drink. This way they are up and running within 15 min or so.