Hi Mike, read the o2 link on the left.

It works well for many of us.

Read all info that is available on the site, then ask all the questions you want.

All the best

Man you do sound pretty "clustery". Dang.

Effective treatments for CH do abound fortunately.

If I were you I'd probably first get onto hi LPM non re-breather mask O2 for aborting attacks immediately. Proven very effective. Bonehead doctors don't know jack about it of course, but you'll find details here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

For a preventative, I'd check into the sub hallucinogenic doses of some otherwise hallucinogenic substances shown to snuff a headache cycle out. That's gotta sound really left field, but it's actually not IMO and is gaining some serious attention from prominent researchers. You could search this board and the old message board for "RC seeds" for a starter. And there's clusterbusters.com.

I've seen some encouraging reports here just lately regarding other non drug approaches for preventatives, such as using Taurine, Kudzu and melatonin.

There are lots of more conventional, more toxic, more side effect prone preventative meds such as Verapamil that people have success with, and that neurologists routinely prescribe. I'm on a less common one - Neurontin. You really want to seek out a headache specialist neurologist for this.

Then there are imitrex injections, for many of us a guaranteed silver bullet way to abort an attack and a critical component in the arsenal. They are expensive, and you don't want to rely on just them. More like a back up in case your preventative and the O2 doesn't work.

LOTS of other stuff to combat CH with, which you'll find on this site - ya came to the right place. 

Or you can avoid a whole bunch of anguish, frustration and suffering by getting welding oxygen tomorrow morning.

Spend some serious time reading this site. There is more info here on the subject of CH's than you can begin to imagine.

Invest in yourself.

Marc

  First, start to learn some basics about CH.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Don't seen any neurologist. Too many of them lack training and experience in dealing with complex headache disorders.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Explore the buttons, left, starting with OUCH and the many internal links there.

And then keep us informed about your progress, questions, etc.

Best wishes....

Hi Wiz!  What part of Chicago?  I'm from Aurora.  Drop me a PM or E-mail and I'll give you my Phone number.  Maybe we can get together for coffee or something and talk.  I'm no expert, but have been fighting these for 32 yrs, so I've tried a few things.

Grab a couple of Red Bulls, Monsters, or 5Hr Energy's (my preference) for a quick abort until you can get set up properly on O2.  Slam one down as fast as you can drink it at the very first sign of a hit.  If I get it soon enough I can knock one out in 5-8 mins.  If I don't get it right away it will at least knock it down to a bearable level.

Read the O2 info on the left until you understand it fully.  Go to your Dr and insist (demand if you have to) at least 15 lpm and a non-rebreather mask.  Try to get a script for 25 lpm if you can.  It makes a big difference to me to have the higher flow rate.  My Dr knows I have researched CH much more than she has so she will usually give me what I ask for, so I didn't have any problem.  I would also recommend the O2ptimask (available through the CH.com store).  This is not just a sales pitch.  I don't make a nickel from it, but they were developed for us clusterheads by Linde, and really work a lot better than the old non-rebreathers.  (I have several of the old kind you could have if you want to give it a try.)

Throw away the Aleve, or save it for a back ache.  It will do nothing for CH.  The reason you were experiencing relief when you did was that was when your attack was ending.  Aleve cannot touch the pain of CH.  All it will do at the level you are using is eat your stomach and liver and kidneys.  Been there, done that.

Glad you found us.  Hope we have helped.  You have just found your new home.

Jerry

Welcome Wiz and I'm sorry to hear you're having such a rough time with CH and Doctors.  The doctors alone can be enough to cause a headache 

As you've heard before seek out a Neurologist or headache specialist asap.

Start A HEADACHE LOG!!  If you bring in something in black and white to a Dr to read this will help, sometimes they just don't get it until you take the time to log all your hits, times and intensity.

In the mean time, there is an herb you can get that may help lower the intensity and the frequency, (it works for me but may not work for everyone).  Kudzu is the name of the herb, you can order it off line or see if a local GNC carries it.  I order mine off line since it's a heck of a lot cheaper that way!

Also as previously stated get some O2 if you can.

Please let us know how it goes and keep in touch.

bejeeber wrote on Oct 2^nd, 2009 at 8:43pm:


Yes, I meant get a script that calls out specifically a non-rebreather mask and regulator of at least 15 lpm.  Your script needs not be that specific and any decent resp therapist can look up the info and get you what you need.

HOWEVER, if a doctor is learning about CH you need to educate him/her and make sure you do the same with anyone who is treating you.

Hi Wiz..I'm pretty new to the site as well, but it's full of wonderful people and advice.  I, like you, would have these damned headaches come on and I was swallowing advil like they were tic tacs. Now I'm trying the kudzu route and was headache free for 2 nights and altho one tried to break thru the barrier last night, it didn't fully succeed.  So I take this as a good sign on the kudzu.  I'm going to get the melatonin as well.  Not sure if the energy drinks would work for me..I did gulp down a Starbucks double shot which didn't do squat.  But hey... whatever works.  My Neuro is ordering me the oxygen and wants me to have accupuncture, altho several people on this site have told me not to waste the money...it doesn't help (the accupuncture, that is)  Also, and this message is for anyone on Imitrex...this is something I found on Wikipedia...don't know how many of you it will effect.
  The patent on Imitrex tablets expires in the USA in 2009, and the generic sumatriptan tablets should be available shortly thereafter.
Anyway, welcome to a really great support group.  I've been dealing with these headaches for over a year every night (chronic, not episodic) and this forum is the best thing that's happened to me during this time.  It's unfortunate that any of us have the need to be here, but Thank God this place exists.  Alot of compassion and knowledge.  Best of luck to you Wiz.

Hi and welcome.  You are no longer alone with this condition.

THIS stands out to me like a red flag:

Quote:


Please tell us that you have since...found a more knowledgable Dr.
Mold doesn't cause Clusters.  Moving from one city/state  to another does not cause Clusters.

Please read the info Bob Johnson gave you.  Read all the links to the left.  Educate yourself.  Knowledge is power.  It will allow you to save yourself hours, days, or as many people here....YEARS of mis-diagnosis and grief. Not to mention pain that could be allieviated so much sooner.

I'd love to have a exact figure of how many people i know here that went decades w/o a correct diagnosis.  How many had all their (perfectly healthy) teeth pulled because they were told it was their teeth that were the problem.  How many had sinus surgery..I could go on, but I think you get where I'm coming from.

I've been chronic for 22 years now.  Oxygen is my savior. 

Linda