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newly diagnosed and so scared (Read 972 times)
courtney
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newly diagnosed and so scared
Nov 6th, 2009 at 12:28am
 
Hi guys,

After waking, this morning, with a pain in my right eye socket that I didn't even know was possible and puking twice because of the pain, I realized that I needed to talk to the doc.

I thought he would just call some meds in for me and hopefully it wouldn't happen again.  I have a 5 yr old and a husband who travels 95% of the time with his job.  I can't even fathom the idea of having to go through what I went through this A.M. again.

Sure enough my doc said that everything is pointing toward a cluster migrane diagnosis.  He gave me a shot and a medril-dose pack.

I was just hoping someone could help me know what to expect if this diagnosis is correct.  I would so appreciate any and all input.

thanks,
Courtney
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lorac
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Imagine


Posts: 433
Tennessee
Gender: female
Re: newly diagnosed and so scared
Reply #1 - Nov 6th, 2009 at 7:56am
 
Welcome Courtney.
   Take the cluster Quiz on the left side of this screen, and It should give you a little more input.

   I truly hope you DON"T have Ch, but if you do, there is lots of help and info here.         Some others will be along soon, with more input.
   Hang in there!          lorac
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Bob Johnson
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"Only the educated are
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: newly diagnosed and so scared
Reply #2 - Nov 6th, 2009 at 8:33am
 
Complex headache disorders are tough for many docs because they received so little education on the subject and there are so many varieties of headache.

Personal education is your first line of defense and comfort; second, is to line up a specialist. Read the material in the OUCH site (left buttons) and this article.
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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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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.  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.
==========

Try your best to not expect the worst until you have worked with a doc and have an accurate picture of what is going on.
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Bob Johnson
 
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Iddy
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Smile


Posts: 486
Toronto,Canada
Gender: male
Re: newly diagnosed and so scared
Reply #3 - Nov 6th, 2009 at 9:30am
 
Hi Courtney, you have come to the right place. I hope you get a quick diagnosis.

If it is in fact CH you have been given a lot of information courtesy of Bob. The more you read up on CH the better off you will be.

Wishing you PFDS as soon as possible

All the best Smiley
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Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
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Martin
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Ready for anything this
world can dish!


Posts: 101
Ottawa, Ontario
Gender: male
Re: newly diagnosed and so scared
Reply #4 - Nov 6th, 2009 at 2:31pm
 
If your diagnosis is right, then you're at the right place.

This site is filled with good information, you should read all you can.

And when you have questions, post them here.  I've never seen a more compassionate group of supporters.  And we all know what you're going through (which is so nice, as migraine sufferers will kill you with their good intentions)

good luck, hope ur AM is better.  bad headaches and puking first thing are a terrible start to any day
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Joni
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Knowledge is Power


Posts: 476
Gender: female
Re: newly diagnosed and so scared
Reply #5 - Nov 6th, 2009 at 3:47pm
 
Good luck!  Hope you are at the wrong place, but if it is correct...you will be comforted and okay.  Read all you can on this site!

Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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