Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
New a/ an Insurance/Treatment Question (Read 421 times)
supportivewife
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
New a/ an Insurance/Treatment Question
Jul 22nd, 2009 at 10:15am
 
I'm the wife of a clusterhead.  My husband started getting them when he was a teenager and went to all the doctor's he could for no relief.  Ever since we've been together (7 years) he's denounced their abilities to help him.  

He's in an episode again, they come on every 2-3 years usually in the late spring/early summer.  For a few years he didn't have health insurance but just got some.  We didn't put his cluster headaches on the application because he hasn't been treated for them in 12 years (& the application only went back 10 years into medical history).  I'm worried if we try to go to a doctor (or the ER as he has asked me to bring him to twice now but the cluster ended before we could make it there) now if he'll be covered or if they'll consider it a pre-existing condition.  Does anyone know or can anyone make a recommendation for how to proceed?  He is covered on an individual plan.

What will or can the ER do? and if he does go how should I handle that to advocate on his behalf?  we've had bad experiences w/ the ER docs only caring for their self preservation rather then patients here and I don't think that most ER docs fully understand CH.

Its hard to deal w/ these because when he does NOT have a headache he's in denial of how bad they are and then when it comes on he's upset and talks silly.  I know that in 12 years the treatment options have changed and maybe even improved.  

I'm also curious to learn if anyone has had luck w/ alternative treatments like acupuncture?

Thanks,
Ariana
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: New a/ an Insurance/Treatment Question
Reply #1 - Jul 22nd, 2009 at 11:17am
 
Re. I'd "casually" call the insurance company and ask if they REALLY only wanted a 10-year history or a long period. Sort of assure them that you want to play the game honestly. If 10, you're home free. (Just don't say anything about his current experience!!)
===============
Lot has happened in the last few years re. treatment of cluster. ER doc's have little experience or training in headache and you will get the least competent treatment there--our collective experience says so!!

Suuggest finding a headache specialist. Many neurologists are also lacking in training & experience with cluster and many of our folks have had to search for years before finding good diagnoses and 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.  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.
==========
He needs to get up to date on what we know and new treatments.

 
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]
======
Finally, current treatments:

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


 Stay in touch............
Back to top
« Last Edit: Jul 22nd, 2009 at 11:19am by Bob Johnson »  

Bob Johnson
 
IP Logged
 
Callico
CH.com Hall of Famer
*****
Offline


Author of "Stranded at
Romson's Lodge


Posts: 4916
Aurora IL
Gender: male
Re: New a/ an Insurance/Treatment Question
Reply #2 - Jul 22nd, 2009 at 11:19pm
 
What Bob said!   Wink  That makes me sound smart, but Bob is the resident expert.  I defer to him in almost everything.

Acupuncture?  I don't know of anyone who has had relief from it except relieving the wallet.

Jerry
Back to top
  

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!