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Cluster Headache Help and Support >> Getting to Know Ya >> Hello Again
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Message started by rob__d on Jan 24th, 2010 at 2:34pm

Title: Hello Again
Post by rob__d on Jan 24th, 2010 at 2:34pm
I'm sorry to say that I am back. It has been 6 glorious pain free years, and don't think I didn't appreciate every single one of them. But they came back for a visit last week and have been here ever since...although there are a few changes this time:

1) I have missed 2 of the last 7 days. I'm sure that never happened before.
2) I am stricken at 6 or 7 am, vs the usual 2 or 3 am.

During the last bout, I discovered Stadol and was amazed at how it masked the pain. I could feel the headache work its way through my body, and would sweat like always, but felt no pain. When the headaches returned last week I discover that I had a brand new dose of Stadol that I had not opened...expiry date 2006. I know this will make some of you cringe, but I took it and felt immense relief. Not complete relief, but wonderful, nonethelesss.

I see that Stadol is not offered anymore. I would be most appreciative if someone could suggest a drug that seems to work the best. I understand Axert gets good reviews.

Thanks for listening.

Rob Dow
Toronto

Title: Re: Hello Again
Post by Fox on Jan 24th, 2010 at 3:16pm
Rob,

Sorry your sweet remission ended.

I never heard of Stadol, but I see it is(was) an opiod analgesic.  These may certainly mask the pain, but that's all they will do, with some risk there.

An opiod (hydrocodone) was added to my arsenal several years ago.  Pill form took a while to get there, but it did a good job killing the pain Imitrex pill didn't.  And it left me very pleasantly stoned for the after attack burnt-toast session.  Not appropriate for morning or day time, as I'd have to stay home (no driving on that stuff).  I tried this 3 or 4 times, and then put them away.  Since then my HA specialist nixed opiods from my arsenal.

Explore other alternatives with your doctor.  Read the stuff on ch.com.  Oxygen as an abortive and verapamil preventive are helping me.  Your mileage may vary.

Good luck.  Careful with the opiods.  They are addicting.

Edited to add:
Cycle changes happened to me recently as well.  Previous cycle shifted to early AM attcks.  This cycle is back to my usual 11PM-2AM window.  Also this cycle gave me 5 days off, then more attacks, which never happend before.  Keeps me on my toes.

Fox

Title: Re: Hello Again
Post by Bob_Johnson on Jan 24th, 2010 at 7:35pm
You have many meds which are both more effective and more appropriate for cluster. What follows is a list of the most common used; a medical article which it would help for you to digest; and, the most essential at this stage, how to find a good headache doc.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND 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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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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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 Login or RegisterEND 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 Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.

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Pain meds are both effective and have too many long term danger to use--most especially when you are not under the care of a specialist in complex headache disorders.

And do your best to find a neurologist who has experience with headaches. Our collective experience plus medical reports, show that many general neurologists have little training and/or experience with complex headache disorders.







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