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new meds for me (Read 675 times)
indigotony
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Let the good times roll


Posts: 7
new meds for me
Oct 14th, 2011 at 5:42am
 
hi

Just been to Doc....again

Now on pizotifen,  daily as a preventative

Dihydrocodeine for the visit of the beast.

Anyone used thse? to any avail?

2 weeks then he may refer me to neuro......I hope.

Ta
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: new meds for me
Reply #1 - Oct 14th, 2011 at 8:56am
 
Your doctor knows nothing about CH.

This medication is used to prevent migraine headaches. It is not used for acute migraine attacks or tension headaches.

HOW TO USE: This drug is taken by mouth, generally starting with a bedtime dose, then increased slowly to 3 times daily. The maximum dose is 6 mg daily. Take exactly as directed regularly. Effects should be seen within 4 weeks. If your doctor plans to stop the drug for a period of time, the dose should be reduced slowly over 2 weeks to decrease the chance of increased headaches reoccurring. After a period of time, this medicine may not work as well as it had before. Consult your doctor if this occurs.


This is not a CH treatment I've ever heard of, and the codiene, Shocked narcotics have no place in the routine treatment of CH

You have 3 options:

1: Stay with this doctor and hurt, a lot.
2: Get the referral to the neuro NOW
3: Find a GP with a clue about CH.

Sorry if this sounds harsh but this doctor knows absolutley NOTHING about CH. Relying on this person to help you with your pain is like asking your 2 year old to disarm the nuclear bomb in your living room. The chances for success are really slim. Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: new meds for me
Reply #2 - Oct 14th, 2011 at 9:39am
 
So, Joe hit you after his 6th cup of coffee!--but he's on target.

Print out the PDF file, below. Use as a discussion tool with any doc you see for Clusters and to give you an idea of what are the most common current meds for Cluster.

AND, if at all possible, find a headache specialist. It's remarkable how little education most docs receive in treating complex headache disorders. Many folks take years of searching before they find good, effective treatment.
===
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.
===
For your information:




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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Bob Johnson
 
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