I am so completely new to everything.  It seems to me that besides O2 there really isn't a medication that doesn't have some pretty nasty side effects.   Don't get me wrong some of the side effects are totally worth it to get some relief and I know that every medication has side effects.   I am just wondering if there was a med that helps that doesn't have a nasty side effect that you have to deal with?
I was on prednisole years ago for tendinitus and it gave me an ulcer, and that's what they put me on for the CH and it seems to be doing the same. 
From what I have read on here, most of the meds used to treat CH have some pretty nasty side effects.  I havent' read tons, just what I can in between hits but that seems to be pretty common.  I guess I am jsut wondering where to start first to get some relief without having to deal with side effects of the meds if it can be helped. Thanks.

It's critical for your peace of mind to understand that Federal law requires the listing of side effects. What is almost NEVER expressed here in our messages is the actual rate of occurrence. If you get to the library or drug store and read the PDR (Physicians' Desk Reference) you will see the rate is 1/2% or less and upward.

Rates are POSSIBILITIES, NOT PREDICTIONS. It's a mistake to take every listed side effect as a statement that this WILL occur for you.

Individual biology and our personal medical history is so complex that it's extremely difficult to predict what, if any, reaction you may have to any particular drug or combination of meds that you may be taking. Your single, best protection is to get from your doc/pharmacist, a list of the possibilities and then monitor yourself. Few side effects are life threatening at such speed that you can't respond to signs. Know the signs of a developing issue allows you to contact you doc for advice.

I'm troubled by the number of folks who post comments about side effects, written in such a style that it conveys that this or that side effect is always associated with XX drug. These statement are a disservice to people who have no background in medicine, to new-comers who need information and not fear.

Another self-protection: never accept such a statement which is not given along with some information about degree/frequency of occurrence. Appreciate that we are not medical profs. and confirm what you read here before taking action upon our messages.
------
A message I posted about this same issue re. dogs. The message is the same......

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
--------------------------------------------------------------------------------
This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects.

Well said Bob!

There is always a possibility  of an adverse reaction to almost anything we put into our bodies, be it medicine, food, suppliments, etc.  Until tried you have no way of knowing whether it will be a problem for you. 

I am one who manages to have an adverse reaction to many of the drugs prescribed for CH, but have had good success with some of the alternative methods.  I've not gone the psychodelics route yet, although I've been considering it for some time.  That has not been an option due to connections with law enforcement within the family and my unwillingness to compromise them.  That being said I encourage you to investigate them and judge for yourself.  My primary success has been with Kudzu, a Chinese herbal that I used to replace Verapamil and Lithium.  It has given me very good results and the only side effect I have noted has been a bit of gas.  That can be potentially embarassing, but worth the risk to me.

You need to do your own research and determine what direction you want to go with your own treatment.  Check out the potential for relief as well as the potential for side effects.  Know what to look for, but don't go into it with fear.  Good information can relieve the fear.

Jerry

Thank you both.  Guess I am just trying to find relief without annoying side effects (though it might be worth it).  I go back to the doc on Monday and am going to talk with him about trying something else, the methylprednisolone doesn't work and last time gave me an ulcer a couple a years ago when I was on it and I think it's happening again. 
This is week 4 of my first cycle and just trying to figure out what to try first to battle this and get on with my life.

I forgot to send along two important learning items:

 
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]
==========

These are the most commonly used meds for CH. Print the first list out and use as a tool for discussion as you talk to the doc about your options.

Second item largely duplicates the first list but the articles you find here are worth exploring.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE