My story...
43 Female Northern California.
Doctor has put me on 120 mg at night VERAPAMIL and Claritan for the cluster headaches.

About 4 years ago I had a procedure that injured my pancreas landing me in the hospital. I eventually had a operation where they attached my pancreas to my stomach. They thought I would be insulin dependent but my pancreas bounced back and was working fine. I was told to check my sugars once a month just in case.

A year after the operation I was at work and my left eye vision went cloudy instantly. I stood up and the pain came.Worst pain of my life. It was so bad I left work and drove to the emergency room 2 miles away. By the time they got the on-call eye doctor in to see me the pain had dropped to a ache. The doctor checked my eye and said it was fine. He then asked me if I had diabetes for which I answered no. I went home and checked my blood sugar and it was 565. I was put on insulin. My eye stayed blurry and had a ache for about a month after. I believe this was the initial injury and cause of my cluster headaches. I am pretty sure it damaged something that night. 

The next 3 years I went undiagnosed. I went to the eye doctor 3 times and they always said my eye was fine.

After the first month I would find myself driving to work on Thursday mornings (A 140 mile drive) and at 630 am I would stop and take a 30 min nap and wake up to the pain in my left eye. It would water and feel like it was forcing shut but it hurt if it was shut so I would try to hold it open with my fingers. My left nostril would drain clear fluid.

The first year it would only be on Thursdays and lasted only 5 min to 30 min average and by noon the blurriness and ache after would go away. I did not pay attention to any pattern just noticed they would go away for a month or so then come back.

The second year I started having them also on Tuesday nights around 800 pm but these were way more intense then the morning ones but with all the same symptoms and lasted at least 1 to 4 hours and when I would try to lay down it would intensify.

I eventually decided I must have chronic dry eye or a sinus infection until earlier this year I started waking up to them.
These are the most intense but seem to only last 20 min to 1 hour.

Once May came around I started having them almost every day and night sometimes multiple times a day with my eye feeling like it went through a war zone and drooping after. I went 17 days straight with no relief and at that point contacted my primary care physician who asked me tons of questions and had me come in for a evaluation. She told me I had cluster headaches and I thought she misdiagnosed me till I goggled it and found all my symptoms RIGHT THERE ... 

They seem to be getting worse and that scares me :(

I have found slight relief by

1. laying down with my head on the pillow but my left eye being free from anything touching it and facing towards the ground.

2. Boiling water then sitting hoovered over it breathing in the steam.

3.The craziest one of all is I use surgical tape and tape my eye open slightly. I use one piece for the top lid then 1 pieces for the bottom lid and it actually helps enormously. I know it is weird but anything to stop the pain :(

All the sites I have gone to seem to have the same exact info and very little of it... So glad I found this site :)
 

Hi Nancy,

Yep this site is the motherlode for info and advice on various ways - prescription and non prrescription - that some significant relief can be found. Welcome!  :)

Nancy, I'm glad you are fighting the beast, and that you have found some measure of relief. The good news is...there are more and better ways to attack it.  We promote a 3 prong attack: a longer lasting preventative, an intermediate preventative, and several quick acting abortives.  For preventatives, we have found verapamil up 960 mg/day (your dose is extremely low), lithium, the two in combination, clusterbusting and the vitamin D3/Fish Oil/calcium diet are often very effective. Prednisone tapers tend to be the intermediate of choice, beginning around 80mg/day and gradually decreasing from there. This gives the preventative time to build up. And abortives. Nothing better than pure, 100% O2. Read the tip on the left and troll the site for posts...there is a right and a less effective way to use it. Other abortives used in tandem with O2 are melatonin at night (5-18mg/day), Red Bull, imitrex injectables, and others. REad, and read, and read some more. Take notes. Ask questions. We're here if ou need us. God bless. lance

Wimsey has given you a boatload of info to digest. This is the link he referred to:

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

Used correctly, oxygen will completely change how you view the beast. I used to be a quivering baby waiting for the beast to kick my ass twice a day, every day, for my typical 2-3 month cycle. I'm male, 51, have had CH for 33 years.

With oxygen, I feel the burning and stinging in my left eye, the tension starts to build in my neck, I fire off the oxygen and 6-8 minutes later I'm pain free. Got me through a 31 year law enforcement career. On cycle I used to keep an E-Tank in the trunk of my cruiser and would often have it in the front seat, aborting a hit, while patroling. Just to show you how portable and effective it is.

So glad you found us, as Wimsey showed in his post, you have MUCH reading to do. An educated CH'er hurts a whole lot less. There's always someone home here to help you.

Joe

If you have the option, when you have a complex medical history it would be better to work with a headache specialist.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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You should have been given a med to abort attacks in addition to the Verap, which is for long term reducing/blocking attacks.

See the PDF file, below.
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To introduce you to 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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Suggest you print the following and give to your present doc re. Verap dosing....

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.

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Update!!!!

My doctor originally said I can come in during a cluster headache for a oxygen treatment but she can not prescribe oxygen to me mainly because it wasn't covered by my insurance.

After reading this forum I sent her a E-mail telling her exactly what I needed and that I want to know why it is not covered ...Her reply was she will consult with the neurologist today to get the prescription:)  She is a awesome doctor who knows all my history.

Hoping relief is in sight :(
The BP meds have tamed them a bit.

Progress is GREAT news. Even if your insurance won't cover it:

E-Tanks...$4-$5 bucks a month to rent, $12-$15 a refill, regulators are $20 on E-Bay, mask is $20. I went out of pocket for many years. Compared to my co-pays for some of the other meds, oxygen is a bargain! Wishing you luck and speed with the neuro, 02 has certainly tamed the beast in my world, hoping it does the same for you.

joe

Where do I find it that cheep? Every place I have called is 40 plus a month to rent and 20 dollars to refill :(

You call 'em up, ask to speak to a manager, and then ask what the cash price is. Either that or you get welding O2.

I was uisng Physicians Medical Supply in San Diego when I was doing out of pocket. What part of the country are you in?

Joe

Northern California

My medical plan approved it and they are delivering it today with no cost to me :)
3 E tanks a regulator and the mask. My dr says to use 10 ml but I guess I will try 15 ml to start and see how it goes.

I'm pleased for you to be getting oxygen as you'll love how it can kill of CHs rapidly.

With the mask you might want to look at getting one from the CH.com store as they are hugely superior to most of the standard non-rebreather masks supplied by oxygen companies.

Experiment with your flow rate. Most people find that the higher the flow rate the faster the abort time, but some people abort fine with just 10lpm. I know that for me, 25lpm is about twice as quick as 15lpm.

nancy that's fantastic news. Couldn't be happier for you. remember one of the most important keys to 02 success is getting on it right away. A delay of even a few minutes can substantially increase my abort time.

Hoping it proves the miracle for you its been for me.

Joe

Depending on many hits you have to abort per day with the O2, if the O2 is working well for you, you may want to call your medical supply place and tell them "get me a freek'n M tank over here, pronto!".

(Weekends can be an O2 users enemy, since the medical supply places are often closed and if you run outa O2, you've also run outa luck)

I doubled my dose of VERAPAMIL to 120 in the am and 120 at night and my headaches frequency went way down after I started taking it.

I have the oxygen now and out of the 8 times in the last 2 weeks 6 of them I aborted by doing the oxygen while 2 of them were pretty hardcore :( I have 0-15 regulators and wonder if I need to get 25ml ones. I usually do 2 times 20 min each time with about 10 to 30 min in between.

If I use the 25ml do I lower the time of the treatment?

No. Start huffing as fast as the regulator will let you, don't stop until the headache is gone. You may find the abort times run much faster. Consider drinking an energy drink while you abort, I use sugar free red bull. It seems to speed the abort, and prevent the come backer attack.

Joe

Nancylefteye wrote on Jul 19^th, 2011 at 5:36pm:

If I use the 25ml do I lower the time of the treatment?

I'll ditto at least 25 lpm on the flow of O2.  If you've already had success, I think you'll notice a dramatic difference over 15 lpm.

You'll have to experiment a bit.  A good rule of thumb is to breathe O2 (hyperventilate--it speeds things up) for as long as it takes to completely abort, then continue breathing oxygen for as long as it took the abort to occur.  For example--if it took ten minutes (or one hundred breaths) to kill the thing, then continue to breathe O2 for another ten minutes, or another one hundred breaths to make sure the thing is good and dead.

Sometimes it'll start right back up again.  I think it's because the triggering mechanism for the headache, whatever that is, hasn't "gone away" yet.  To avoid that happening, you might want to try chugging an energy drink like Red Bull or something else with at least 1000 mg. of Taurine after you knock the thing down.  It seems to help some people avoid getting a rebound headache.

Good luck.  Sounds like you're well on your way to getting a handle on this thing.

Best wishes,

George

Just to make sure . . . you did get the mask with the bag?  If so, remove the exhale valve from the one side and then tape up the holes in both sides.  Hold the mask tight to your face for the inhales, then crack the bottom of the mask for the exhales.  The one litre bag the med supplier gave you will fill in about 4 1/2 seconds . . . so. when the bag is full, inhale til it's flat, which gives you the 02 stored in the bag, plus the 15 lpm the regulator is delivering.  With that mask I would usually inhale for 3 seconds, then exhale for 4 seconds . . . develop a rhythm.    This will work til you can order your O2ptimask (3 litre bag) which enables you to hyperventilate and abort even quicker.

SAFETY NOTE:  Your mask will come with a green strap.  We used to tell people to cut it off, but have to admit it's handy for hanging on your cart or for use while driving (you still have to hold tight for the inhales) . . . . BUT . . NEVER EVER use the strap at night.  If hit at night, it's to easy to wake, hit the 02, stop the ramp (and rocking), and, since you're exhausted anyway, lie down with mask on to finish him off. . . . way too easy to fall back asleep.  If you fall asleep with the mask strapped on, you'll wake strangling for air (remember, you've taped the holes on the side).  If you always hold the mask, it will fall away when you pass out and you'll just wake with an empty tank.

Re 02 prices:  Call all the med suppliers in your area . . . make sure you tell them you don't have insurance that will cover and ask for their cash price.  I am fortunate to have a med supplier that doesn't require a deposit, monthly fee or limit on tanks (I keep 20) and only charge $10 per tank. 

  Be Safe,   PFDANs

     Richard