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Newbie, misdiagnosed as for 25 years, what now? (Read 532 times)
John L
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Newbie, misdiagnosed as for 25 years, what now?
Apr 18th, 2011 at 5:59pm
 
Hi, my name is John. I have been suffering headaches since I was in year 12 (1985). I was told I had migraines, but many of the symptoms didn't apply to what I was experiencing.

My CH last fo days, sometimes weeks. I have had several nights in the ER but the migraine drugs they gave me didn't work at all.

Finally I was told what I had was CH. I now have been prescribed Carbamazepine SZ 100mg (twice a day). I should take this before an attack starts, but that doesn't always happen.

I have a mild CH at the moment. Every few minutes I'm stopped in my tracks, pain is awful, then I'm good again. I just want to get back to work because I'm self-employed.

Suggestions to kill this CH at the end stage would be appreciated. Cold and hot packs work a little, but not 100%.

Thanks, John
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Bob Johnson
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Re: Newbie, misdiagnosed as for 25 years, what now?
Reply #1 - Apr 18th, 2011 at 8:29pm
 
Please tell us where you live. Follow the next line to a message which explains why knowing your location will help us to help 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
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Best option, if available to you, is to find a headache specialist. If this one med was given by the ER, you need more help from docs with good training.
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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. 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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See PDF file, below to give an outline of the kinds of treatments for Cluster.

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A good introduction:




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]
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Starting exploring the buttons, left, starting with the OUCH site and read the messages. Much you may not understand at first but, in time, you will see ourself and your options in the experiences of others.


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Bob Johnson
 
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wimsey1
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Re: Newbie, misdiagnosed as for 25 years, what now?
Reply #2 - Apr 19th, 2011 at 8:40am
 
I'm almost afraid to do this because variations do occur, but this from Bob's post above:

Quote:
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).


What you describe seems outside of this "norm." Who diagnosed you and using what criteria? Why carbamazepine and is it helping?  There are a number of abortives we find helpful, but the top of the list is high flow O2. Read up on it using the link at the left. Glad you found us. Blessings. lance
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