Post by Bob_Johnson on Oct 1st, 2010 at 9:09am
Ian, your experience is very common, especially in someone who is just starting to develop CH.
It's not uncommon for us to experience a changing symptom picture (duration, intensity of pain, site of major pain, etc.) for a good many months, even years, before a stable pattern emerges. It's premature to make any statements about what is happening to you.
The med you are using is about 30-yrs out of date (in the U.S.) for the treatment of CH so I'm reluctant to ascribe any changes in your condition to it.
While you are waiting for your neuro appt, start some deep learning about CH. (Many of us know more than our docs and we have often had to teach them about how to treat us! I hope you end up with an open ego who will receive!)
First, start to cultivate patience. It's a prime survival skill for CH Folks.
Second, explore your excellent support group:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or 
END PRINTPAGE. They are both a support and an aid if you have problems with your health care system.
Third, read the PDF file, below. It will give a current outline of treatment of CH and you can use it as a guide to how you are being treated by your new doc.
Fourth, read the complete version of this artricle:
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or END 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]
Finally, when you are tired of this material, explore the buttons (left) starting with the OUCH site andd its many internal links.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27
)
It's not uncommon for us to experience a changing symptom picture (duration, intensity of pain, site of major pain, etc.) for a good many months, even years, before a stable pattern emerges. It's premature to make any statements about what is happening to you.
The med you are using is about 30-yrs out of date (in the U.S.) for the treatment of CH so I'm reluctant to ascribe any changes in your condition to it.
While you are waiting for your neuro appt, start some deep learning about CH. (Many of us know more than our docs and we have often had to teach them about how to treat us! I hope you end up with an open ego who will receive!)
First, start to cultivate patience. It's a prime survival skill for CH Folks.
Second, explore your excellent support group:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END PRINTPAGE. They are both a support and an aid if you have problems with your health care system.Third, read the PDF file, below. It will give a current outline of treatment of CH and you can use it as a guide to how you are being treated by your new doc.
Fourth, read the complete version of this artricle:
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END 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]
Finally, when you are tired of this material, explore the buttons (left) starting with the OUCH site andd its many internal links.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27
)