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Just Need to Talk (Read 1001 times)
voc417
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Just Need to Talk
May 19th, 2009 at 2:09pm
 
I just need to tell someone my story and get it off my chest. It's about the same as everyone else's, only the names have been changed to protect the innocent. I have had CH's for the past 18 years and only diagnosed with them for about 5 years. My original neurologist who diagnosed me told me what they were and put me on topamax and verapamil, then moved to a different part of the state. My next neurologist told me they were just migraines (even though I only get them 2x a year, they are only on the right side of my head, they only last for an hour or 2, they make my eyelid droop, etc) and told me to quit smoking. My family doc who had seen me in the middle of an attack knew what they were and would give me steroid bursts to shorten the cycle, and he prescribed me O2. unfortunately the oxygen didn't work for me.
I am now in my 3rd week of a pain in the ass at least 3 times a day cycle, and finally my neurologist believes they are cluster headaches. he just put me on 500mg depakote 2 times a day, but also gave me a shit load of stadol, which as many of you know, doesn't do a damn thing except get you stoned. my wife got me some capsaicin nasal spray, which does help with the shadows, but I have yet to try it on a full blown attack (she just picked it up for me an hour ago).

anyway, I just wanted to whine and I'm sure my wife is tired of me doing it (even though she says she's fine with me complaining). thanks for listening.
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QnHeartMM
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Posts: 1783
San Diego, CA
Gender: female
Re: Just Need to Talk
Reply #1 - May 19th, 2009 at 3:24pm
 
Voc - you mentioned that you've tried o2 before and it didn't work. Our experience has been here that many people did not have luck but had not been coached on how to use it. The masks they give you are not adequate and neither is the normally prescribed flowrate. Over to the left is the menu bar - check out the yellow 'oxygen info' (if you haven't already) and see how others are using it. I'm sure most anyone here would be willing to coach you further about "non-rebreather masks" and flow rates.

Hope this helps. o2 made a huge difference for my husband Guiseppi.

Christy
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Batch
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Posts: 3708
Bremerton, WA
Gender: male
Re: Just Need to Talk
Reply #2 - May 19th, 2009 at 5:16pm
 
Well said Christy!

Voc...  Christy is spot on...  Give oxygen therapy another try...  Check your email.

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Bob Johnson
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Re: Just Need to Talk
Reply #3 - May 20th, 2009 at 6:59am
 
Stadol for CH suggests a neuro who is lacking experience/training in headache. If you have the option, seek another helper:

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.
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Print the whole article (link, line 2) for your benefit. IF you can't change docs and the current one is open to learning from you, we can supply material in line with current practice of treating ch.
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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 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]
========
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register


 

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Bob Johnson
 
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voc417
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I'm not personal enough
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Posts: 9
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Gender: male
Re: Just Need to Talk
Reply #4 - May 20th, 2009 at 9:40am
 
Thanks everyone. I was really just bitching because I needed to, but it's nice to have people who have knowledge answer back. I didn't know that there was a Michigan Headache & Neurological Institute. I live in michigan and that is a place I'm going to check out. Thanks again to all.
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just-squiggles
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Re: Just Need to Talk
Reply #5 - May 20th, 2009 at 12:01pm
 
I would advise calling the Michigan Headache & Neurological Institute,
even if you can not go there,they may be able to reccomend a CH wise doc in your area,a referal from them may even get you an appointment sooner..maybe not but it's worth a try.

Secondly,as above,TRY O2 AGAIN!!!!!!!!!!

There is always someone here to talk to,

Good Luck
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