Just hit a new cycle after 3 years of remission.  Realizing that in the past, I was self-employed and could get through the 4-5 weeks of the cycle by keeping my schedule as open as possible.    Well, now I'm a teacher, actually a student teacher in a masters program.  Need to be at school teaching the 6th graders and on top of my game everyday....but..... 

I'm doing okay with oxygen and Imitrex to battle the beast at night, but the next day...I'm having trouble concentrating, feel groggy, a little out of it (like having the flu and taking flu meds), and have that feel that CH could happen anytime.  Is this the shadow I've seen referenced on the board? 

I'm just not 100 percent...at all.... really stinks.  Anything I can do?  Advice?  Doesn't seem to matter if I used oxygen or Imitrex.  Oxygen doesn't always work, so I take $ out of the kids college fun to free myself from the pain with Imitrex.  Jon

Are you on a decent prevent? Verapamil, Lithium, Topomax? Lithium at 1200 mg a day will cut out 60-70% of my attacks. Might help you get through more of the day without hits.

Joe

Thanks for the reply, so the doc put me on prednisone, a six day does, today is day 5.  Not working.  I've noticed that doc's aren't up to speed with all this CH stuff, so glad to have this site.  I'll inquire with my doc about those other meds as preventative. Do you take them only during the cycle?

Yes, just while on cycle. The verapamil is used at doses higher then most docs are used to, some go as high as 960 mg a day to get relief. Sorry the pred didn't work for you, I go on a 10-14 day pred taper, 60-80 mg to start, on down to zero. I get complete relief at doses as low as 30 mg a day. :(

Joe

I know I have that sluggish feeling after a particularly hard and long hit. Shoot, after any hit for that matter. I think it's more a product of the attack itself than the abortives, especially not O2. And lack of REM sleep. You may feel lousy but lack of continuous sleep won't kill you...that's the good news. The bad news is...you'll feel like you've just joined the waking dead. Throw on some Jerry Garcia and make the most of it. Seriously, do collect info on preventatives as Joe said, and talk with your doc about one. Or a combo. Good luck and God bless. lance

Please tell us where you live. Follow the next line to a message which will guide 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
=================
If your doc's knowledge, or yours, is not up to speed it's hard to develop a good treatment plan.

See the PDF file, below. Then, print out the full article, which follows.
---



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]
===
If you have the option, find a headache specialist. Beats working with someone who is not skilled.
---
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.

---