on the kip scale, i have about an 8 going on right now.  I am beginning to think that i will never have another pain free moment in my life.  My left eye is watering so bad i can hardly see out of it.  I feel as if i have a drill bit in my left eye.  I won't go on because i know everyone here can relate.  Anyway, 3 weeks ago, after much searching I found a neurologist that would take my insurance and wasn't totally ignorant about what a cluster headache was.  She prescribed Topamax for me as a preventative  and gave me a script for Trammadol for the pain, which i never filled because i knew it would be a waste of money.  the first week, i took 1 topamax at night, the next week, moved up to one at night and one in the morning, and last week, I started taking 2 at night and 1 in the morning.  Somewhere between the 2nd and 3rd week, i notice that the left side of my face (the side where my clusters are) started getting numb and tingling.  Then my hands.  Next all around my lips.  I started shaking like a leaft.  I felt like I had the flu.  I am pretty sure (as is my neuro) that these were side effects from the topamax so she stopped the topamax and has written a script for Indomethacin which i am supposed to start tomorrow.  Can someone tell me about this med?  Is it a preventative or is it just for the pain?  I talked to my neuro's nurse today and she asked me if i would be interested in seeing a headache specialist and i jumped at the chance, but he is one that wouldn't take my insurance, but my neuro's nurse knows the headache spec. nurse so MAYBE i can get in. 

I am hurting so bad, and i just don't know what to do, so i'm not doing anything, just walking the floors and crying.  Anyone have any suggestions for the one that will come tomorrow?

Indomethacin is NOT for CH, it's for another headache syndrome, if it works it tells you that you do NOT have CH.

Your first line prevent should be Verapamil, it is the most commonly used because of it's success rate. Lithium is what I use.

When you get in to see the neuro, I would ask for the following:

Get started on verapamil as a prevent, I stole the following from a post Bob Johnson put up:

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

Print this out as it speaks in "doctor language so it's a better chance they'll listen to you. I would also ask that they start you on a 2 week prednisone taper to give you some relief as it takes 10 or so days for verapamil to become effective. And insist on oxygen as an abortive, as you keep seeing on the board, it's kind of a miracle med for many.

NONE of that helps you now. For now, get some energy drinks, Rock Star, Monster, Red Bull, any containing the combination of caffiene and taurine, chugged at the first sign of an attack you may be able to abort or reduce the attack.

Hang in there......patience now in establishing an effective routine will be well worth it as CH tends to be  a lifetime affliction.

Joe

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
=========
Clearly, your present doc knows she out not trained to help you. Explore some of the hospial based contacts, below, for leads on finding a doc who will help you.
--
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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IF you have to stay where you are, then the question: is she open to accepting treatment information which we can supply to you? You can test her by printing out the following and give to her.
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1. Joe's Verap info.
2. the PDF file, below.
3. 


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]


4. The big gun!

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

PDF file.

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Get O2! Now! Do not count the cost, do not pass go...get the tank and the nonrebreather at your own expense if necessary (from a welding shop) but honestly, for so so many of us, myself included, it is the miracle you are praying for. Please. Blessings. lance

Hi.. Thank you to everyone for the very helpful info.  I was able to talk to my neuro today and shared with her some of the information that y'all gave me.  So, she said that it seemed that verapamil would be what we should "move up" to, and so she wrote me a script for that!  So i feel like i am making some progress.  Now, to get that oxygen! 

and another Neuro gets enlightened! :)

hello
Indomethicin I was using for :hermicraina continua" which I was diagnosed with about a year ago by a specialist in florida after I had a "cluster headache cycle" I was having constant shadowing after the cluster cycle about 4months long of the cluster cycle and i still  have shadows. The indomethicin helped until recently and I was on a high dose 200 mg a day and still getting breakthrough headaches and my specialist here in nyc last week diagnosed me once again with "cluster headaches" So yes alot of doc's use indomethicin to rule out other headache types hc ect. Since the indo was not working for me at 200 mg I dont have hc which is 98% success rate for prvent for hermicrainia. It will work some on clustrs cause its a non steroidal anit inflammitory but not very well. listen to all these experience peeps on the board u will get relief that u need!
blessing
Anthony

Beth,

Something is either missing, or you've been seeing some very slow physicians treating your CH.  The latter appears to be the case... 

You came to us in April saying you were diagnosed with CH and you've just now received an Rx for verapamil...  and still no oxygen therapy.  This is pushing the believability index to the limit...

Show or send your neurologist a printout/copy of the following link:

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

It's the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias from the National Guideline Clearing House run by DHHS...   In other words, Big Government...  normally AFU, but in this case... Spot On!

The following chart from this link summarizes the accepted standards of care in treating cluster headache:

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

You'll notice that oxygen therapy at 15 liters/minute is at the top of the list as the first acute treatment of choices for cluster headache.  (We've found higher flow rates that support hyperventilation far more effective.  That said, an oxygen flow rate of 15 liters/minute is presently the highest flow rate that's supported by medical literature and clinical studies of this disorder - You can buy your own regulator capable of much higher flow rates once you have the Rx for oxygen therapy). 

Moreover, if you're prescribed any medication that is not on this list you need to ask your neurologist: WHY?  You should only be prescribed medications marked with an "(a)" to ensure the most effective treatment possible for your CH.

Show this chart to your neurologist as well. Tell her the neurologists on the EFNS Task Force who developed this standard of care for cluster headache are among the brightest minds in the field of neurology and very experienced in treating patients with cluster headache.  They treat more CH'ers in a week than most general neurologists see in a life time.

Below the chart are two sample prescriptions for oxygen therapy as an abortive for cluster headache.  Your prescription for oxygen therapy should read exactly like either of these two samples. 

If the Rx is written in medical shorthand, it must include the disorder being treated (cluster headache), an oxygen flow rate of 15 liters/minute and non-rebreathing mask.  If the Rx does not contain these items, the home oxygen therapy provider and your medical insurance company will assume you're being treated for COPD.  That assumption will have you and your doctor doing the dance of seven veils and jumping through hoops with oxygen saturation level testing requirements mandated by law for COPD.

Check your PM inbox for more info.

Take care and take control...

V/R, Batch

Well, I was feeling all optimistic yesterday, like something was FINALLY being done to help me.  Just got ready to start the verapamil, and when i went in to take it, this is what i found:

Verapamil 40 mg tablets

Take 1 tablet by mouth every morning for 4 days.  Then increase to 1 tablet twice daily for 1 week (If not better, contact office)

:-?

This sounds NOTHING like what i have read here.  Batch, i am calling to make an appointment to go into the office to  see her, but i am faxing a copy of the info i found at the link you provided.  Also, I am going to start taking the Vitamin D3 tomorrow.  Should i start with 5000iu a day or 5000 twice a day?  or less than that?  Thanks to all for the advise.

Well, I was feeling all optimistic yesterday, like something was FINALLY being done to help me.  Just got ready to start the verapamil, and when i went in to take it, this is what i found:

Verapamil 40 mg tablets

Take 1 tablet by mouth every morning for 4 days.  Then increase to 1 tablet twice daily for 1 week (If not better, contact office)

:-?

This sounds NOTHING like what i have read here.  Batch, i am calling to make an appointment to go into the office to  see her, but i am faxing a copy of the info i found at the link you provided.  Also, I am going to start taking the Vitamin D3 tomorrow.  Should i start with 5000iu a day or 5000 twice a day?  or less than that?  Thanks to all for the advise.

Personal experience and everything I have read indicates that a dose of 40mg a day or 80mg a day is unlikely to have any impact as a preventive for CHs. The literature commonly states that 360-480mg a day is a typical dose, with some people going as high as 1000mg.

With verapamil, it often takes 7-10 days for a dose level to become effective, so changing doses before that length of time is not sufficient to judge if a higher dose is required.

What may impact the dose of verapamil is another condition, like low blood pressure, which means that a higher dose of verapamil can not be used.

Beth,

While the starting dose may be a tad low for CH'ers, the instructions for verapamil your neurologist provided are consistent with a conservative approach to taking this very potent heart medication.  It's very common and an accepted practice to titrate up on medications like this. (Titrate - Start at a low dose and incrementally increase the dose on a schedule over time until you reach a therapeutic level with symptomatic relief).

The prescription for verapamil for CH'ers is usually accompanied with a second Rx for a prednisone taper that's started at the same time as the verapamil.  Prednisone is the world's best & worst steroidal anti-inflammatory medication.  It's best because is works most of the time very effectively and worst because of the side effects (mood swings, uncontrollable hunger and weight gain, destruction of your endocrine system if used too long at too high a dose... and the list goes on...) 

A taper is where you take a little less of the medication each day or every other day until you zero out the dose. It's the best way to get the beneficial therapeutic effects from prednisone without experiencing any of the onerous side effects. 

The taper is also essential as your adrenal glands, part of your endocrine system that sit on top of each kidney, will stop making natural corticosteroids such as cortisol and catecholamines such as epinephrine when the serum level of prednisone is high.  The taper will allow the the adrenals to resume production of these corticosteroids and prevent more serious and possibly life-threatening conditions that could occur if prednisone is stopped abruptly.

If scheduled properly, the prednisone taper should run out about the same time you've titrated the verapamil up to a therapeutic level.  This should keep you relatively pain free for the ten day to two week period.

The third Rx should be for oxygen therapy at a minimum flow rate of 15 liters/minute with a non-rebreathing oxygen mask.  It's prescribed as an acute treatment and abortive should you have any leakers or burn through CH attacks during and after the pred taper and verapamil titration.

If needed, some neurologists will also write an Rx for sumatriptan succinate (imitrex) nasal spray or subcutaneous injections should the oxygen therapy fail to stop a heavy hit.

As far as the anti-inflammatory regimen dosing goes, 10,000 I.U. vitamin D3 is usually well tolerated.  I started there last October.  My wife downs 15,000 I.U. vitamin D3/day and she doesn't have CH.  She loves it.

You've got all the good stuff by now so please keep us posted.  As always, discuss the contents of this post with your PCP/neurologist.

Take care,

V/R, Batch