Hi, I'm a 47 yr. old male from Chesterfield,Va who has just been diagnosed with CH. I have 2 grown sons and a 17 yr old daughter who lives with me and my Fiancee, who is probably weighing her options   
as I type.It started suddenly on June 7 with pain on right side of head and nausea. My family doctor told me it was migraines then sinus infection and prescribed meds that didn't help. The headaches continued,they were sporadic and tolerable up to that point.Then 2.5 weeks ago the beast changed into a nightmare.This is hell being slammed in the face every night an hour after you fall asleep,lasting from 2-3 hrs.Just to have it happen again as soon as the first one wanes.I'm pacing the floors ,going from room to room trying to escape myself with no success.Ah,here comes the sun,now I can get a nap in.But not today,two more headaches this morning,cancel sleep.My neurologist put me on Predisone and Valproic acid over a week ago and I'm getting worse.Waiting on Insurance approval for O2.I'm a walking zombie,out of work and scared.I don't know how much more I can take.God,what have I done to deserve such a cruel joke as this.I don't know how you on here have survived this sadistic monster for so long and I've only met him a little over month ago.If you believe,prayers are more than welcomed.Thanks for listening.

Immediate reaction: if Pred. didn't stop your attacks within 2-days either, 1. dose too small, or 2. possibility that you don't have Cluster.

Then, would like to know about your doc's experience, training treating headche disorders. A striking % of neurologists do no have training or experience treating headache.

For your own benefit, need to ask him--directlly--what is his training and experience WITH headache (other stuff he maly treat donesn't count in counting up the score!)

If his skills are not clear, consider seeking a specialist.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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Stat to learn about Cluster. It will help you grasp whether the doc is on target in his treatment.
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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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Three 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
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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But, at this time, the most important step is to confirm, with a good doc, tha you have Cluster. If you don't, much time will be wasted.

He prescribed 20mg. of Prednisone per day and 750mg of valproic acid per day.I've had a bad reaction to the Pred. in the past and maybe thats why the dose isnt high enough. At this point I'll take the side effects over these headaches.Now he has prescribed Frovatriptan 2.5mg but my insurance is only going to pay a portion of the cost.Is it worth it?

HI Tugn,
Welcome, sorry you had to find us.Just a couple of things
you can try that might help you control the beast.
When you next see your doc ask him about Verapamil,
it's the prefered drug for treating CH's.Also Melatonin
has a good record to help you avoid those night attacks,
you can buy it over the counter from your local drug store.
have you noticed the Vitamin D3 Regime on this site, it has
an 80% success rate in aborting CH's.
Hoping these few tips will help you become pain free.

Good Luck, Hoppy.

My prednisone tapers start between 60-8- mg a day and taper down. 20 mg is really on the low side.

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!

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

Joe

Reinforces my concern about your doc's skills. Sorry!
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Pring the PDF file, below. Commonly used meds for Cluster with evaluations of effectiveness.

Pred usually starts at 60-80mg but you only need it for a few days so this high dose not, generally, a problem.

Would suggest Imitrex INJECTION as the most effective for Cluster. Generic version available.

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Yup I was put on a 80mg 12 day taper of predisone about a month ago - it was a miracle at the time - I was like you first time with cluster and getting a few days of relief was awesome.  I had to ask for it directly and at that dosage to get it though - my doc didn't know clusters, and my nero appointment was going to be a months wait.  Be your own advocate - be direct and don't be patient - go after the doc to get what you need.  if he doesn't work with you on this or listen, fire him.  I had good luck with the D3 regiment and verapamil a preventive (needs time to build up so Predisone gave me that time to get it in my system), and Sumaptriptan injections for aborts.  Also energy drinks really help shorten the time a HA last and can also head one off if chugged early enough (first sign of pressure and pain on your affected side).

Not much to add to the above. It's all good advice and I would second Bob's concern that your doc knows what he's doing. Perhaps he can be educated but you might be better off requesting a referral to a headache neuro who has experience with CHs. You asked how we did it. We all went through periods of time like you are describing until we found ways to cope with and manage the beast. The list of interventions is quite long and in all probability only some will work for you. The hope is though that some will do the trick, you just have to experiment to find which ones: a good and effective abort or three; a good preventative; and if needed, an effective prednisone or methylprednisone intermediate. Keep writing and let us know how you're getting on, even if it's only to fuss. We know about fussing. God bless, and prayers your way! lance

Thanks for all the support, still here and taking notes and will be more informed when I go back to see my nuero doc on Tues. They delivered my home oxygen on Wed. but didnt leave the proper  mask. Dumbasses. So I used what I had and did help. I did get some sleep Wed. night, thank god. I think that is the first time I have dreamed in almost three weeks. Dont know if it was the O2,melatonin,or the Frovatriptan that worked. So last night I didnt take the Frova, couldnt sleep.Going back to it tonight Spoke to my nuero doc today and he is upped my Valproic(depakote) to 1000 mg a day. If this doesnt work by Tues. ,he's putting me on Velpramil.Told me he would have put me on it sooner but I have a slow heart rate (57 bpm).Blood pressure is great.Just going to have to monitor it closely.Started the D3 regimin today.Wish me luck.Keep sending advice.   Ricky

Since they didn't give you the right mask, I'd suggest you get the one from the CH store - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

I've got two of the previous version which are just great for using oxygen to abort CHs, much better than the cheap disposable ones with a small bag that most medical stores supply.

You create real problems when you are still trying to work out the treat plan from the doc (and he is still feeling his way around to find the "right" balance of meds/dosing),

AND, at the same time, start the D3 (or any other treatment you find here).

You end up not being able to tell which approach is effedtive. It's confuses the doc and leaves you stuck either having to use both approaches OR stopping one and seeing what happens. Then, perhaps, having to go thru the same stop using/observing routine with the other treatment.

Sound medical treatment does not involve walking down the drugstore aisle and plucking this-and-that off the shelf--just "to try".

I got my oxygen on thursday but I don't have the right mask either gotta order one.  If your headaches just started at 47 I wish I was that lucky.  I mean it sucks to have them period as they straight up ruin your life which you've probably realized very quickly.  I been getting them since 18 and its hurt everything in my life for the last 10 years.  I hope that your lucky and whatever meds you take work great for you.  No one should have to deal with this type of crap in there life its just to ridiculous.  Oh and mark down when they started this year so you can prep for next year if they come back.  Mine always come the week of July 4th or a week after.