Hi everyone! My name is Johnny and I`m SOOOO glad I found this site! I have been an episodic CH sufferer since I was 22 and am now 39...UGH! To make a long story short, I went thru countless rounds of tests (mri,blood work you know, the usual crap!) and was never diagnosed with anything. So, for some time, a hot shower(scalding hot) and dancing was my only relief, and as we know, nothing works sometimes :'(

Since I found this site, I`ve been to my family Dr. and have started Presidone and he gave me a script for Fioricet for the attacks. Well the Fioricet didn`t work. Not sure but the Presidone might be lessing the attack time? Is that possible? I am just about done with a 2 week cycle. And I took it upon myself to get an o2 set up and that is now my attack plan which seems to be working. Does anyone think I should still go see a Neuro?

Hope I posted this right!  Happy to be here...Johnny

Hey Johnny,

yes, very good thing ya found this site - the info and advice here has helped myself and many others tremendously.

If you do go see a neuro at this point, I think it will likely only be worthwhile if you make sure it's a headache specialist. The average run of the mill neuro is unfortunately an arrogant blithering ignoramus when it comes to CH, and will proceed to dispense all kinds of wrong  and harmful info and prescriptons.

As far as "nothing works sometimes" is concerned, that's a perception that I hope will change for you. Armed with a powerful beast killing arsenal, lots of knowledge gained here, some luck and assistance, some of us have had cycles where it was possible to prevent or abort every single attack. Well at least I know I have.

A headache specialist is always the best case scenario. They're just not always available. Sadly there is still no cure, but with a decent approach you can dramatically reduce the amount of owie time!

1:  A good preventative routine. For me that's Lithium at 1200 mg a day, Verapamil is a very common first line prevent that many have had success with. Topomax is used by many but is often referred to as dopey-max due to some of its side effects.

All take a while to get up in your system, for me it takes about 10 days. I do a prednisone taper during that period as pred gives me 100% relief. You just can't stay on  it long term or it can mess with your body.

2: Then there is your abortive strategy. Good on your for getting the oxygen. 31 year sufferer here and still my first line and most effective abortive. I use the imitrex injectables when I'm caught away from my oxygen. Imitrex nasal spray works for many too.

That's it in a nut shell. Stay away from the fioricet and the over the counter meds. Won't touch CH pain and will eventually cause you serious issues!

Welcome to the board.

Joe

Let's start with some basic learning which, it's clear, your doc could use. Suggest you print out both of this articles for him.
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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]
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And the PDF file, below.
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As your have time, explore the buttons, left, starting with the OUCH site and the many internal links.

As you will appreciate with time, CH is such an "orphan" disorder that not too many docs have any useful awareness/knowledge/experience treating it. One of our best defenses is to know more than the doc, feed him good medical literature, thereby helping him to help us. Many of us have gone this route with success.

Keep reading the messages here in all the categories and it will deepen your knowledge and will encourage you to jump in and share your experiences.

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Listen to everything these guys are saying! They could paid a lot of money for this kind of advice! And keep the faith!