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Cluster Headache Help and Support >> Getting to Know Ya >> Any New remedies?
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Message started by Smknsmly on Sep 17th, 2009 at 2:48pm

Title: Any New remedies?
Post by Smknsmly on Sep 17th, 2009 at 2:48pm
I love this site. A few years ago, i never knew what I had, doctors never mentioned clusters..Then I found this site a few years ago.

Ive been around here a while, this is the first time ive been on in a while. Although i just now registered. Looks to be some new info around. Like mushrooms, RC Seeds, Melatonin..Ive never heard about using this stuff.

I'm 24 and had CHs for about 6-7 years. I use oxygen and hyrdocodone pain pills. I got the doc to perscribe them instead of imitrex because they work as good and are a lot cheaper..

So whatsup with this new stuff? What should I try? I may pick up some melatonin this afternoon.

Great site!  8-)

Title: Re: Any New remedies?
Post by vietvet2tours on Sep 17th, 2009 at 2:52pm
Hydrocodone is worthless.  It will not take the place of Imtrex as it is a narcotic, not a vasoconstrictor.

              Potter

      

Title: Re: Any New remedies?
Post by Marc on Sep 17th, 2009 at 3:00pm
I'm with Potter on this.

Dump the narcotics and explore some of the many, many other options presented all over this site.

Spend some time reading (then read some more) and feel free to ask questions for more specific information.

Marc

Title: Re: Any New remedies?
Post by Callico on Sep 17th, 2009 at 4:30pm
I will concur with Potter and Marc.  Not only do narcs not work for CH they are highly addictive and very hard to get off of as a number of us can attest.  You need a Dr that is more knowledgeable than yours if he will prescribe a narcotic for CH.

Oxygen is the abortive of choice.  See the info to the left.  I would recommend at least 25 lpm rather than just 15.  I can kill a hit within 5-6 minutes at 25 lpm.  I would also suggest you look into Kudzu as a preventative.  It has been doing very well for me.  Another thing to look into is Testosterone.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE; I found a marked improvement when I started hormone therapy.  It didn't stop them as it has for others, but cut them by about 50%.

Jerry

Title: Re: Any New remedies?
Post by Brew on Sep 17th, 2009 at 5:27pm
Cow turds.

Or bleu cheese and vinegar.

I'm just kidding. Quoting from a different thread.

Title: Re: Any New remedies?
Post by Bob_Johnson on Sep 17th, 2009 at 7:37pm
Here is the most current thinking about CH/treatment:
 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (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]
=========


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)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
============================================

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.




Title: Re: Any New remedies?
Post by Smknsmly on Sep 18th, 2009 at 10:27am
Thanks for the info..My doc had perscribed oxygen but only at maybe 5 lpm and I had a small tank. I went to a welding shop yesterday to get set up with a big o2 tank. I'll be buying the mask that is recommended here and picking up a high flow regulator. I never knew I was supposed to have so many lpm. I'm also going to look into some herbal preventatives.

I'm also only periodic or whatever, not chronic. Although, I do have some 8-9 K scale headaches. I get them only about twice a year, seems when the seasons change or when the pollen and allergies are bad. I can't imagine having them chronic episodes, I really feel for you guys that do.

thanks again

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