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Cluster Headache Help and Support >> Cluster Headache Specific >> I am hoping someone can advice me on some relief
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Message started by David35lx on Nov 27th, 2012 at 6:58pm

Title: I am hoping someone can advice me on some relief
Post by David35lx on Nov 27th, 2012 at 6:58pm
Hello, my name is David and I suffer from episodic CH about 10 years with intermission of about 2 years between the attacks. In first years I was bad diagnosed until I went to neurosurgical hospital in London and they diagnosed me with CH.
In the moment I am passing again for the illness after 2 years of intermission. I don’t have oxygen and never tried the injection.
In the moment I am taking cayenne pepper and I am hoping someone can advice me about this  product or any other to relief the pain. I will go Friday to the GP.
Thanks for the help.

Title: Re: I am hoping someone can advice me on some relief
Post by MDR on Nov 27th, 2012 at 7:40pm
Try energy drinks strong coffee ice packs even exercise

Title: Re: I am hoping someone can advice me on some relief
Post by Bob Johnson on Nov 27th, 2012 at 7:48pm
People who post from GB paint a consistent picture about the poor level of working knowledge around Cluster. Unless you are comfortable that your doctor has some knowledge and experience with Cluster, I'd sugges that you take steps to locate a headache specialist.

Work with your excellent support group. They can advise on your rights to seek a speciality clinic, by-passing local medical services.   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Rather important that you learn about Cluster and how to treat it. This serves as a test of the treatment you are given as well as buliding you confidence in caring for yourself. Few sources for basicss:

Print the PDF file below, give one to your present doctor.
===

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]
==========

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
=============
Essential that you get a good diagnostic work-up, first. There are a number of serious disorders which mimic Cluster but which are not headache disorders. So, take that step before you start testing any of a number of treatments which are available. This can be a complex disorder to manage without some solid medical supervision and sophistication on our part.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: I am hoping someone can advice me on some relief
Post by MDR on Nov 27th, 2012 at 8:10pm
I fight these things with no medication I've been doing it for 10 years or more. I don't like doctors but the people on this board  have been very helpfull I am on the vitamin D regiment  that has helped tremendously  read all you can  on this board  it has been a lifesaver to Me. Thanks Mark Roberts

Title: Re: I am hoping someone can advice me on some relief
Post by wimsey1 on Nov 28th, 2012 at 3:16pm
David, some people from time to time have used cayenne or capsaicin and have reported some success with it. It isn't the best or first line of treatment. You mentioned not having used O2 or imitrex. These are two of the best abortives when used correctly. Also, a preventative is helpful. And all of these require a prescription from a doctor. So...go to your GP and get a referral to a headache specialist. Don't suffer a moment longer than you need. By the way, I second the Red Bull comment. blessings. lance

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