I am new to this site, but so far find it very interesting and hopefully educational for me on how to ease the pain of my CH's. I am 52 and never had headaches in my life till 2 years ago. The first headache I got so painful I thought I had a bad tooth cause the pain started in my cheek bone and worked its way up to eye then head all on the same side. Then it happened 3 more nights in a row almost like clock work (same time at night). Thought I had a bad tooth or something so went to Dentist who performed x-rays to find no problems. Pain was so severe every night that I went right to my regular Dr that same day. He could not find a thing wrong and sent me on my way. Next 3 nights same thing. Went back to the Dr who then ordered a MRI, which showed clean. Now still suffering with no pain killers, the headaches kept coming. Had to make 3 trips to the Dr all within 5 days to finally convince him to give me Norco for the pain. After 3 more visits to him and me doing research on one sided headaches convinced him of CH's. The only thing I currently taking for them is the strongest Norco which takes at least 2 and sometimes four to mask the pain. I have had these now for almost 2 years and the longest I have gone without a headache is only 5 days It is starting make me prematurely old (lol)  wearing me down. Do most people go to a neuro Dr? I have not tried that yet and I have to believe the continuous use of Norco will take a toll on me. Does anyone have any suggestions of better things to use? I want to use oxygen as last resort because I am on the go all the time traveling for work.  Thanks

Hey Snowman...

Welcome aboard.  Sorry you had to join us... 

After reading your entry I'm going to quote the "Dodge Boys" Commercial from 1970...  "Boy...  You in a heap of trouble." 

I didn't see one cluster headache medication... and the acetaminophen and hydrocodone you're taking are worthless at stopping a cluster headache... The hydrocodone will only mask part of the pain and will eventually become addictive...  The only thing good is you want to try oxygen therapy...  Good on you for that. 

If you get the Rx make sure it's written properly with a statement saying "Oxygen therapy for Cluster Headaches" a flow rate of 15 to 25 liters/minute with a non-rebreathing xoygen mask.  The Oxygen Info link at the left and others above in the "Sticky" section will give you the rest of the gouge...

The EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias at the following link should be your starting point for treating your CH.

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

I've sent you an email with some suggestions to take to your doctor along with some source material he will understand.

My suggestion here is start reading the tabs at the left of this screen and start with "Oxygen Info".  Then take a look at the cluster survey to see what medications other CH'ers find most effective...

Take care and again, welcome aboard.

V/R, Batch

Hi Snowmaninmi

First off I'll echo everything Batch said.

I'd recommend seeing a neurologist who specializes in headaches. From the medication that your current doctor had given you it is clear that they are not up to date with how to properly treat CHs, so getting properly diagnosed and treated is essential.

Narcotics do little other than mask some of the pain and they have a huge amount of potential issues around addiction plus you gain a tolerance to them, needing more to treat the pain.

What works a lot, lot better is a two pronged attack. First off is a preventive, with verapamil being very effective along with lithium and topomax. This will prevent many of your CHs from happening at all.

The second line of attack is an abortive to kill off a CH once one starts. Oxygen for this is an excellent abortive. Using the method on the oxygen link (on the left) many can abort a CH in minutes (I average around 6 minutes to become pain free) and there are no side effects.

An alternative is to use imitrex injections when you don't have your oxygen, these work in a similar time scale, however they are expensive and can have side effects.

As for problems with travelling, I am away with work every week but yet I still use oxygen. I just arrange through work to have oxygen available where I work so I'm only away from oxygen whilst I'm flying between cities. When mobile I use a smallish cylinder that will fit in a backpack along with my regulator / mask plus some Red Bull.

Energy drinks like Red Bull containing both caffeine and taurine when drank at the start of an attack can reduce CH intensity and duration.

Others are also reporting success with using high doses of vitamin D3 as a preventive.

Please tell us where you live. Follow the next line to a message which explains why knowing your location will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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First, do not start taking meds to treat Cluster until you have a solid diagnosis made by a experienced doc. There are a many problems which appear to be Cluster but which are, in fact, quite serious. Hadaches are far more complex than most folks realize.
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There is much experience here and in data in the med literature to make the point: most docs lack good training/experience in treating headache. So,

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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You are at an age which is a bit late for Cluster to first appear. This makes it the more important to get a good work-up to rule out other possible causes of what APPEARS to be Cluster.

Lastly, with headache, the regular use of pain meds often leads to the increase in attacks. One of the reasons to get on one of the effective meds to abort attacks and other meds which reduce the frequency of attacks. Virtually by definition, any doc who is treating you only with pain meds only is demonstrating his lack of knowledge.

Hello and welcome, Snowman..!
Batch and Mike have been are two of our guru's on this site.
An additional bit of information you might consider is a Prednisone taper while the Verapamil ramps up to speed.  My Doc prescribed it for me and while on the Prednisone I was totally pain free and had no signs of the beast. It was like an Hawaiian vacation!!  At the end, however, they returned (sadly, from what I've read here, this is usual) but by then the Verapamil and Vitamin D3 etc... supplement regimen (see "123 days pain free and I think I know why" under Medications, Treatments, and Therapies) were doing their mojo.
Also avoid any and ALL alcohol during this time as it is a certain trigger!
Hope this helps! :)
-Gary

Like Bob has said, let us know your area, it's best to be diagnosed first by a headache specialist. 

Snowmaninmi, if the mi at the end means you're from MI, I can recommend a place for a diagnosis around the Detroit area that doesn't require a referral.