I wanted to do a quick follow-up on the Neurologist I saw a couple of weeks ago.  I got his name off the OUCH website, then found a couple of OUCH members in the Columbus, Ohio vicinity to find out who they used and they (the two that got back to me or had valid email addresses) both had seen him.

Dr. Francis J. O’Donnell, DO
70 South Cleveland Ave.
Westerville, OH 43081
614-838-3249/890-6555

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Pros:

•      I called on Monday, had an appointment on Friday.
•      The office staff is friendly and efficient.
•      I arrived 15 minutes early knowing there would be new patient paperwork---I was led to the exam room precisely at my appointment time for a quick blood pressure check.  Dr. O’Donnell came in within five minutes.
•      He does not require a referral (nor does my insurer).
•      He is very familiar with cluster Headaches, sees 10 to 15 CH sufferers a week this time of year.
•      He does not run a bunch of tests.
•      He will not treat you like a mental case.
•      He absolutely recognizes the benefits of Oxygen therapy.

Cons (not that many):

•      He will not prescribe Oxygen to a current smoker---nor will anyone in the practice. I suspect it is a corporate liability issue regarding fire hazard.
•      He can be a little “full of himself” and perhaps only “listens with one ear”.
•      As a headache “expert” who sees a lot of CH sufferers he has his approach  and seems confident that he knows far more about CH than the patient.

His initial treatment (for a smoker) is Prednisone taper and nasal Lidocaine.  I’ve used the Lidocaine a couple of times.  It takes some getting used to.
I have not used the Prednisone and am not sure I will---at least not for this cycle.

In spite of my disappointment over the Oxygen issue  (my insurer would pay for Oxygen for Cluster Headaches without blood gases), it would be very hard for me not to recommend Dr. O’Donnell.  I contacted literally dozens of neuros in the Columbus area; some were out of business, some left me on hold for 30 minutes---not one would see me without a referral.

I’ve chosen an alternate approach on the Oxygen issue and am trying some alternative herbals in lieu of the Prednisone.  Still, I would like to get a valid Oxygen prescription in the near future.

Again, you will not be made to feel like an idiot or a mental case,  he is a no nonsense, get to the point kind of guy.  I wrote up a full history of my CH experience going back 20 years and faxed it to his office---but he didn’t have it.  I also brought a copy for him to read and he left the room for about five minutes---I’m assuming to go over what I had written. :)

We're hearing that "no oxygen for smokers" here a lot more. Kind of frustrating since it seems a large majority of CH'ers are smokers!!! Glad to hear you found a doc who knows CH, that's a blessing in itself. Do look into the welding oxygen route, 31 years of the beast and it's still my silver bullet!

Joe

I'm not going to preach, but you may benefit by quitting smoking.  It has helped my so much and has eliminated any sinus/bronchitis infections since I quit.  My CH cycle times are cut in half, the frequency, duration and intensity as well.  I would do what Guiseppi said and check out welding supply stores or if you know a welder or work in a shop where it's ordered.  O2 seems to be quite popular.  My insurance doesn't cover it.  I found a lot of luck the clusterbusting route.

I’ve cut back dramatically on the smokes by breaking some habits: don’t smoke in the car, in the house or while sitting.  Essentially I go outside and walk if I want a cigarette.  I also bought some really expensive cigarettes which I tend to smoke fewer of but I’m still smoking around ten a day.

I’ve got the welders Oxygen, Optimask ™ and 0-25 lpm regulator.  I’d just like to be legit.  Also wouldn’t mind having a “human grade” portable tank that I could take with me.

Obviously I don’t drink anything alcoholic during my cycles.

I’m also trying the herbal “fix” that someone on the forum advocated:

Kudzu - 1000 mg, 2x per day (morning & night)  
Magnesium - 250 mg, 2x per day (morning & night)  
St. John's Wort - 300 mg, 2x per day (morning & night)  
Skullcap - 425 mg at bedtime  
Melatonin - 10 mg at bedtime  

This spring cycle has been a little odd.  The peak “bone crushing” period was much shorter (a week) but the low grade and shadows seem to be lingering a bit longer than usual.  Also, this year it switched from left to right---which it does every three or four years.

The best news is that the 11:00 PM hit has been far more manageable and it is the last one of the night.

The Oxygen unquestionably works at aborting---but I didn’t have it during the peak of this cycle.

I’m going to save the Prednisone taper for the next one---the late fall early winter one that is always my worst.

I’m going to save the Prednisone taper for the next one---the late fall early winter one that is always my worst.

Yeah, I've been known to horde my pred for the times I absolutely HAVE to have a break! I haven't tried the whole herbal route you listed, but several years ago, ay my neuro's suggestion, I added a daily  Magnesium, Calcium and a Vitamin B-2 supplement to my diet. I have noticed a significantly positive effect on the length and severity of my cycles, and have seen others post similar results.

Joe