Hello, all.  I am new to the site and am happy to have found you.  Been a sufferer for about 10 yrs and have a permanently bloodshot left eye to prove it. 

I'm a 57 yr old white male cigarette smoker in Tennessee.  Self-diagnosed with CH, although I have sought treatment, had an MRI, etc.  Was prescribed Gabapentin 300mg but no effect.

I was attack free for about a year - I swore off alcohol and took 10mg melatonin at bedtime.  I recently "fell off the wagon" and drank 5-6 beers with some old friends in town for a funeral.  That was a Saturday - I was fine until the following Tuesday when the attacks returned.  I've had an incident almost every day since then, about a month.  Needless to say, no more booze for me.

I realize that the nebulous tooth pain I have had for years was a prelude to what I'm experiencing now. My attacks start with that tooth pain (upper left only) and spread to the left eye, temple and sometimes ear.  Seems I can only seek a dark cool room and pray for the thing to pass.  A damp cloth helps a little.  The worst is usually over in about an hour.

I am seeking any advice you can give.  (I realize that smoking may be a causative factor, but a 40 yr addiction is a tough nut to crack.)   

We don't diagnose.  You need to see a Neuro and a headache specialist.

                   Potter

The good news is while quitting smoking will improve your health, historically it hasn't cured anyone's CH!

Welcome to the board. As Potter pointed out, we're real hesitant to diagnose CH. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. There are even some fairly sinister maladies which mimic CH but can be potentially fatal. If there is any way to get onto a headache specialist neuro for a complete work up, that's always the best route. Let us know the area you live in, perhaps we can refer you to a decent neuro others have had success with.

That's a warning for everything that follows! I am NOT a doctor, just a longtime CH sufferer who has learned a trick or two to beat beasty into submission ;)

I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

See an informed headache specialist. You may be suffering needlessly, or more than is necessary. Blessings. lance

Thanks for responding Potter, Guiseppi and wimsey1 (Lance)!  It's good to hear from you.  I am currently "between careers" and without health insurance but will pursue whatever I can afford.  Thought I was having great luck with just 10mg melatonin and no booze.  What are your thoughts on melatonin?  I was led to that by an article from the Mayo Clinic.  I rushed out and purchased what I needed for the D3 regimen but I'm only into it for 3 days so far.  I take very seriously any and all suggestions and info (Guiseppi) but it is a lot to digest and may take me a while to get through it all.  I will pick up some energy drinks today, but I'm a little wary of the caffeine as I don't sleep much as it is already.  But thanks again so much for responding and please keep in touch!      

Cluster is not a simple disorder which you can diagnose yourself. There are dozens of cluster-like disorders which appear to be Cluster but which have nothing to do with headache disorders.

If at all possible, see a headache specialist. Most docs, even neurologists, lack education/skill in treating complex headache disorders.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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Pain in teeth, jaw, eyes, temples, etc. are not the cause of Cluster but arise from the nerves serving our head and which are associated with the part of our brain which is the source of Cluster. Such pain is secondary to Cluster, not a core part of the disorder.

Melatonin has helped some of us reduce the frequency of nighttime hits. I use it, and while I don't get hit every night I do frequently get hit at night. Still, I take it. Doesn't hurt and might be helping. The energy drinks can be tricky at night. It probably would help the hit, as it does during the day, and it might keep you up. My hesitation is this: I take a double Monster at the first sign of a hit then huff O2. Can't do that at 1AM. I don't wake up early enough. By the time I get up the attack is well under way. So I don't know from experience if it would help or not. Others may. Give the D3 some time. It has been a Godsend to many. Blessings. lance

Thanks very much, guys!  I've only known about ch.com for a few days and have benefitted immensely already.

Was rudely awakened a little before 4 this morning with an episode in full swing.  Ran for an energy drink and am convinced it dramatically cut the duration, by at least half.  That was only the third energy drink I've ever consumed in my whole life - the first two (drunk in the preceding two days) averted attacks completely when slammed down at the first signs of trouble.

I'd always viewed energy drinks as part of a potentially dangerous fad, but I've changed my tune.  The only two brands I've tried (Monster and Vegasfuel) were selected based on price - both seemed to be equally effective.  I highly recommend this strategy to anyone who hasn't tried it, unless energy drinks are clearly contra-indicated for some reason.

This will be my fifth day of the D3 regimen.  No signs of improvement yet but I am hopeful.

Also hoping to get an appointment to see a doctor on Monday.  Currently unemployed and without insurance, my options are limited in this respect, but I'm hoping to find someone who will at least discuss (if not prescribe) Imitrex, Verapamil, Topomax and/or Prednisone.

I have a (possibly stupid) question about Imitrex nasal spray for you:  My attacks occur on the left side of my head and face, and my left nostril usually shuts down early into the event.  Could Imitrex be effectively administered via the right nostril?

Thanks again - your taking the time to respond to my concerns has made a BIG difference in my life!