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pasuranyi
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Dec 24th, 2009 at 12:31pm
 
Let me first start by saying that I have been dealing with CH's for about 19 of my 21 years of life! I have only been diagnosed for 6 years though.
I just did a 6 week prednisone treatment to "break my cycle", amongst all the side effects the prednisone has actually made my headaches worse and I am WAY more sensitive to triggers!
After 6 long, miserable weeks on prednisone I am at class this past Monday and before I realized this woman sprayed perfume 5 or 6 times...thanks to her I have had a CH for the past 3 days on and off...by far one of the worst I have ever experienced...nothing works to abort it either...ugh! Last night I was at a kip 9...I just don't know what to do anymore about the pain...nothing helps?!?! Undecided
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bejeeber
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Reply #1 - Dec 24th, 2009 at 1:53pm
 
Pasuranyi, I sure help some of the therapies your fellow cluster heads have found here will help you too.

You'll notice a lot of people here swear by the newer, high liter flow, non rebreather mask method of using O2 to abort hits. Check out the "oxygen info" lnk on the left of this webpage (if the links over there show up for you) for the full details.

Some people swear by prednisone, some swear at it. I swear at it these days myself, and avoid it, sorry its been a bad thing for you.

Have you tried the other mainstream therapies such as imitrex/imigran injections for aborting CH attacks?

There are so many ways to combat this beast, if you hang around, research, and ask questions here I wouldn't be surprised if this site pretty much saves you, as it has me and so many others. There's hope.....
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« Last Edit: Dec 25th, 2009 at 4:45pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Bob Johnson
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Re: New member
Reply #2 - Dec 25th, 2009 at 1:14pm
 
Very difficult to offer suggestions in the absence of a history of your past med use--names, duration, dosing, etc.--what kind of doc's have you seen for the CH, etc.

Not knowing what YOU know, I'm throwing an excellent introductory article. Hope it stimulates some questions from you.
-----------------

 
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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pasuranyi
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Reply #3 - Jan 26th, 2010 at 4:28pm
 
Thank you for your replies!
I have been seeing a neurologist (and his associates) for about 6 years. They just prescribed me oxygen today, however my insurance doesn't cover it for the use of cluster headaches and I can not afford $400 because I am an unemployed student until April (when I graduate).
I am going to be on 600mg of verapamil, 25 mg for topomax, zomig for abortive therapy, and hopefully oxygen (have to figure that out).
I have tried the imitrex but it doesn't work for me...makes me really sick! I have tried maxalt as well, the sublingual and that does absolutely nothing for me! So zomig it is, but even that only takes the edge off!
Thanks for your response, research has been my lifeline because it seems like these doctors and their physician's assistants or whatever don't do the research that needs to be done!
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Fox
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Re: New member
Reply #4 - Jan 26th, 2010 at 4:50pm
 
pasuranyi wrote on Jan 26th, 2010 at 4:28pm:
I have been seeing a neurologist (and his associates) for about 6 years. They just prescribed me oxygen today, however my insurance doesn't cover it for the use of cluster headaches


Aaaarrrrgggghhh!!!  Evil insurance companies.

Would your neuro and/or associates contact the insurance company and explain to them they are badly mistaken, and will be held accountable for denying a prescription for the #1 recommended abortive treatment of Cluster Headache?  There should be plenty of medical research to support this claim.

My HA specialist told me that if I was ever denied O2 by insurance, his next move would be to battle the insurance company for me, and that he has won such battles before.  Holding them accountable for any risk associated with denying well substantiated treatment, could make them reconsider, particularly if they are informed the conversation is being recorded.

"Let me forward you to my supervisor...." and the matter is settled.

Good luck.

Fox
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So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on
 
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pasuranyi
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Reply #5 - Feb 2nd, 2010 at 11:33am
 
Ok so apparently it is the companies in my areas that are ignorant not my insurance company! I called my insurance company and they told me I am 100% covered for oxygen and will have no co-pay for it! I was so happy so I called a home oxygen place (in my area they are all owned by the same company) and AGAIN they told me I wasn't covered!! I was furious and told her she was wrong, gave her all my insurance info and she said she would call me back (that was yesterday). She never called me back but this morning I got a call to wait ALL day for my oxygen delivery...so obviously they worked it out...so far I am NOT impressed with these people but can't wait to try oxygen!
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NancyB
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Reply #6 - Feb 2nd, 2010 at 12:19pm
 
Worth the wait. Hope it's not all day though. Hope your pf soon!
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