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Score 100% on the CH quiz. Off to the dr. Tomorrow (Read 1381 times)
Jnote
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CAPS IS CRUISE CONTROL
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Score 100% on the CH quiz. Off to the dr. Tomorrow
Sep 11th, 2012 at 2:36pm
 
Hi. I just registered today after realizing this is where I need to be. I first started getting these headaches around 15 years old. They went away for years. Now I am 31 and this is my second fall season getting them just about every night after I fall asleep. I have quit drinking and puffin a lil mary jane Embarrassed . That has seemed to take my 10 rating ch down to a 6 or 7.
What should I expect going to the dr. the first time for this?
How do I know if my Dr. is even up to speed on this?
I currently pop some aleve when I feel it coming on and sometimes it helps, but its tearing my stomach up. any other alternatives?
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Bob Johnson
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Re: Score 100% on the CH quiz. Off to the dr. Tomorrow
Reply #1 - Sep 11th, 2012 at 6:05pm
 
Don't be shy about directly asking the doc what his experience and training is re. headache. This is a far more complex area of medicine than is generally appreciated and there are two specialty groups for headache should you feel the need.

Print out the PDF file, below. Main line docs will be working from this group of meds for Cluster.

Get back with a report of your reception and his reaction.
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Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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Jnote
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CAPS IS CRUISE CONTROL
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Chicago, Il.
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Re: Score 100% on the CH quiz. Off to the dr. Tomorrow
Reply #2 - Sep 13th, 2012 at 2:31pm
 
ok will add my location (Chicago). The dr put me on fioricet and he seems to know a lot about every type of headache. first night was headache free:) But I could still feel it lurking in the backround.
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Bob Johnson
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Kennett Square, PA (USA)
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Re: Score 100% on the CH quiz. Off to the dr. Tomorrow
Reply #3 - Sep 13th, 2012 at 3:26pm
 
In a little town like Chicago you can do better than this!

This med is used for migraine and has no first line application for Cluster. So, did he diagnose Cluster? If yes, then look at the list of meds I noted earlier.

The standard treatment for CLUSTER requies two types of meds: an abortive to rapidly kill an attack; and a preventive which reduces frequency/severity of attacks. The aborive works in minutes; preventive takes seveveral days to become effective.
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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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It's an awkward position to be in: after one visit do you challenge his treatment or stay and see the outcome. If the diagnosis was migraine, then stay the course.

If you want to consider altenatives, seek a specialist. Many docs, including neuros, have meager training/experience with complex disorders. Our collective experience and research shows how many folks can drift for multiple docs and years trying to find good treatment--so being assertive at this stage is not to be impulsive.
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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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Bob Johnson
 
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Linda_Howell
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Re: Score 100% on the CH quiz. Off to the dr. Tomorrow
Reply #4 - Sep 13th, 2012 at 7:53pm
 
Jnote,  please take everything that Bob said above to heart.   Also stop taking aleve.  It will be like spit wads trying to take down a battleship and as you've noticed it will tear up your insides to absolutely no advantage.

I can't add anything more to what Bob has already said above, except please know that all of us here know exactly what you're going through and will try to help you in any way we can.

O.K. I lied...there is more.  Read all the links to the left of here as well as some of the posts from sufferers.  I know you cannot read it all but the knowledge here about such a rare condition such as ours is invaluable.  Not to pat ourselves on the back...but most of us have more information about cluster headaches than doctors do.

In our case...knowledge is POWER.  read as much as you can BEFORE going to the doctor.  Many of us have had to wait years..before we found one that knew what the hell he was talking about.  In reading around here a bit before seeing anyone, you will be able to save yourself a lot of money as well as time and frustration..  In your 1st. appt.  you will know if this doctor is a jerk and then you can move on.

Welcome to the home that pain built, Jnote.  Wink


Linda

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