Welcome!

Best advice I can give is get that O2! You won't regret that move....

Bob-  I was more or less just introducing myself and my story, not really asking a question per say...  if I stuck this in the wrong forum I apologize.
  I could use some experiences/info if anyone has had to  deal with school/work attendance issues.  I was told by the Dean that if the professor did not want to excuse me that they did not have to legally.  The dean could have the record removed from my transcript and give a refund but that was it. I cant see how that is even legal.  I feel that is basically discrimination against a disability.
   My doctor is just a regular GP. He is very attentive to fine detail and I truly believe he cares about his patients.  He was actually the one to breech the idea of CH's.  He scheduled me for MRI, cat scan, etc... and then expressed that the next time I were to have an attack that he would rather I come directly into his office instead of paying a $1000 for 30 min of oxygen. If anyone in the central maine area is in need of a doc that is understanding of CHs his name is Dr. Fredrick Heinamenn.  He is more than willing to refer me to a neurologist but the copays are starting to pile up and I feel my current doctor is trying to be as aggressive as possible about the situation. Until loan money comes in I cant afford it.

Im going to attempt today to get my perscription for oxygen filled through my insurance ( Dirigo Health).  Not expecting to have it covered but Im going to try. I will have to pay for it out of pocket if it is not covered. I feel oxygen works the best out of everything I am currently prescribed.

Medications
Verapamil 300 mg/day
Ritalin 60 mg/day
Maxalt  (as needed, recently switched from inj imitrex)
Melatonin  (I take 10 mg every night)

Hi Ryan.  I'm glad you found us.  This site has more information than you will get almost anywhere.

This letter to colleagues was written by a sufferer in England and it has helped many people explain this condition to bosses and the like.  I would print this out and take it to your school.

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

I'd like to ask you why you switched from Imitrex inj. to Maxalt?  The Trex inj. works  fast and you could have been back in the classroom in 10 mins. or so & not have missed that test and subsequently the credits. 

There are ways to deal with CH so that it should NOT interfer with working or school.  No one should put their life on hold because opf this condition because then IT wins.

Linda

No criticism intended in my reply; just want to be able to give you what you are seeking.

I don't think we have any collective wisdom to offer re. the school issues. Sounds like the making of legal complexity, in any case.

Appreciating you doc, liking his style, is a dilemma when his treatment suggests he is not as sophisticated as you might need. Let me throw a couple of items at you which might guide your decision on this question.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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See the PDF file, below.
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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....")
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If you want to seek 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 or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 or 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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Understand the $ issues. Once you have a good Dx, this med has been very effective for some of us and is, on a per dose basis, less than the triptans.

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

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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.

Welcome. You've been given some great advice so far. You seem like an intelligent, sensitive and caring individual with a terrible affliction. That said,

Quote:


...you gotta knock that off, man. You're gonna scare the shit out of your new bride. Find some other way or you'll end up facing this thing alone. Many of us have found a way to become even more calm than we usually are by mentally isolating the pain in our mind's eye.

Get the O2, and whatever other abortive you can use, and stay focused on being the master over your pain. And once you find an effective preventative (I'd talk to your doc about upping the verapamil or combining it with lithium), you'll find yourself winning these battles.

Then, once it's under control, go visit clusterbusters.com