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New member. First CH cycle? (Read 612 times)
KyleVill
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New member. First CH cycle?
Jan 25th, 2011 at 3:34am
 
So first off a little bit about me,

Im 21 years old, 6'2, 205 pounds
I'm currently a student and work also.

When I was younger I had migraines started around age 11 but stopped around age 18

I cant remember having any headaches since the age of 18.


Current:

First HA I had started Janurary 7th,2011 from that day on I have had 15 HA's. First thought it was a migraine but they all seemed to be even worse in px and would have one daily. All located in the right eye/temporal region. All come on fast and strong. I went to my pcp who put on imirtex 25 mg (weak) than I got a referal to a neurologist. She said it sounds like cluster headaches. I agree after reading everything about them. Everything I read about them fits me perfectly. Right now she has me on verapmil 100mg for a week than 200mg after and imitrex 100 mg oral and also injections for when im at work.

Just need some support on how you guys/gals deal with this. I think this could be my first cluster and hope I dont get them often. Im stressing out to the max, I'm normally a great student but have already miss so much school that im debating about dropping my classes for the quarter also with work I have had to leave work early 6 times in the last 2 weeks and worried I might be losing my jobs if it keeps up.

Thanks in advance and its nice to see a forum like this for support.
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wimsey1
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Re: New member. First CH cycle?
Reply #1 - Jan 25th, 2011 at 8:20am
 
Welcome, Kyle. It does indeed sound like CHs..have you taken the quiz on the left? Educate yourself by reading as many threads on this site as you can...and if you want, print out some of the stuff you find, particularly the input Bob Johnson provides. It's great stuff.

It sounds like you're on the right track. I would add that many of us find we need much higher doses of whatever we take than is normally prescribed for the general population. For example, the verapamil effectiveness range seems to be as high as 960mg/day...I take 400mg/day.

As for dealing with this beast, that takes a combination of both good and effective preventatives (like verapamil) and abortives. O2 is highly effective for me and many, many others. But, staying with the main theme here, in much higher than usually prescribed flow rates. We find rates between 25-60lpm most effective. And when you add taurine/caffeine energy drink into the mix (Red Bull, Monster, 5 Hour) it can produce abort times in 6-10minutes. Push for high flow O2. And read the O2 link on the left. It's critical to your well being.

Thanks for joining us. Let us know the progress you make. God bless. lance
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Guiseppi
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Re: New member. First CH cycle?
Reply #2 - Jan 25th, 2011 at 9:00am
 
What Lance just said! Wink

Start reading this board religously, on and off cycle. Work closely with your neuro to establish effective dosing of your prevent, Verapamil, so when the next cycle starts you're immediately ready to take action.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Read this link, learn it! 02 is your new best friend!!

We have a saying here, an educated CH'er hurts a lot less! Welcome to the board!!

Joe
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Bob Johnson
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Re: New member. First CH cycle?
Reply #3 - Jan 25th, 2011 at 9:05am
 
It's very common for many general neurologists to have little effective knowledge/experience treating Cluster. If you have the option, find a specialist:

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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Imitrex pills are the least effective form of this med for Cluster--they are too slow acting. Injection is the first choice and there are several other meds in this class.

In terms of cost, the following is almost as fast acting at Imitrex injection but at much lower per dose cost:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Educating yourself is very important--so that you can steer the doc in a useful direction--an approach many of have had to use.

See PDF file, below.

====




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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]
===
The second title, following, is a good investment; first title if you can afford it.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.






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