It just hurts. I have some symptoms of a CH, tearing and drooping eye, but not the severe focused quality. It just hurts everywhere in the front temples and eyes. I am not nauseated or photophobic so it's not a common migraine.

O2 didn't work. Sleep didn't work. I tried a Red Bull and Excedrin Migraine a couple times but it didn't work either, so I am not trying again in case of rebound.

It's been like this since I ended the pred taper. I'll talk to my doc this week, I just want to know if other people sometimes have this.

The pred taper only serves to give immediate relief from attacks but, at the same time, you should be starting a long term preventive med.

See the PDF file, below, for commonly used meds for Cluster.

If you have the option, working with a headache specialist is our favorite option  in orde to find knowledge/skill treating headache.
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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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A useful introduction 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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Explore the buttons, left, starting with the OUCH site.

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Hey there, JackBurton (and the meatball express?) sorry to hear things aren't working out for you. Just curious about the O2. What did you try and with what equipment? Often we hear this and it's too low a flow rate with the wrong kind of mask. If that is the case it's worth a revisit. Blessings. lance

JackBurton,
Are you on a preventive med or was Pred the only med prescribed?

I second what Lance asked...what flow rate are you using to abort attacks with o2?

Are you using o2 from a tank?

Are you using a NON-rebreather mask when you hyperventilate the o2?

Are you able to hyperventilate the o2 (real fast inhale, real fast exhale, like a panting dog) or are you limited on air flow and only able to breathe normal?

How long are you using the o2?

Do you get on the o2 immediately of feeling head pain or wait until it gets really torturous?

You mentioned you feel pain in the "eyes."  Do you feel pain in both eyes or just one eye?

Are you under the care of a headache specialist and/or neurologist or just a regular doctor?

Please answer these questions so we and/or your doctors may be of better help to you.

-Gregg in Las Vegas

M sized tank, 15 lmp, nonrebreather mask and all.
I give it 15 minutes and then stop if no discernable relief.

PCP started me on 180 mg verapamil at the same time as O2 was ordered, plus the pred taper which I finished.

Pain behind both eyes, eyes hurt to move. Better today but my face is sore, it's weird.

I am in northern Ohio, and the weather has been insane, I know that is contributing to it.

I see a headache specialist next week.

Thanks, guys. :)

JackBurton wrote on Jan 26^th, 2012 at 8:55pm:

M sized tank, 15 lmp, nonrebreather mask and all. I give it 15 minutes and then stop if no discernable relief. PCP started me on 180 mg verapamil at the same time as O2 was ordered, plus the pred taper which I finished.

The flow rate can make a huge difference. I've two regulators, one will go to 15lpm and one to 25lpm. I abort over twice as quick at 25lpm, so you may benefit from a higher flow rate too.

And do make sure that you start on the oxygen as soon as possible after the start of a CH, that too can make a big difference.

With verapamil, you're on a fairly low dose. Most people need 360-480mg a day, however some find relief lower and some higer (up to 1000mg).

JackBurton,

15 lpm is pretty low to breathe fast, but I have aborted attacks at 15 lpm if I get on the o2 IMMEDIATELY at the 1st twinge of discomfort.  Hyperventilating o2 requires 25 lpm, even 40 lpm with hard hits.  Ideal o2 therapy requires hyperventilation.  I suggest a high flow regulator that can be ordered from Flotec and other companies, and/or pick up a welders regulator from Harbor Freight or welding supplier. 

180mg Verap is extremely low for treating CH's.  See thread titled "Verapamil Dosage" under the Medications/Treatments board.  You will find 480mg is very common to treat CH's, even higher dosages but cautiously with EKG, monitor BP/heart rate, etc.

Good that you will see a headache specialist next week. I do question why you feel pain in both eyes, as CH's is a unilateral disease.  Might consider a 2nd diagnosis just to rule out anything else in the head causing your pain and confirm CH's.

Do more reading to be a self advocate, ask questions here and feel confident going into your appt next week armed with your knowledge.  "Knowledge is power!"

Keep us updated on your progress, regress, questions, etc.  We are here to help! ;)

-Gregg in Las Vegas

LasVegas wrote on Jan 26^th, 2012 at 9:59pm:

I do question why you feel pain in both eyes, as CH's is a unilateral disease.  Might consider a 2nd diagnosis just to rule out anything else in the head causing your pain and confirm CH's.

There have been cases where CH has been bi-lateral and some where the side affected has shifted.

Totally agree about getting a confirmation.