Hey guys, I have an appointment with my doctor the 29th of this month. Question is... should i ask him for something specific? I was told by one of his staff members he does specialize in CH...I don't know if this is true or false. I would like to go in there with some knowledge and just say...hey I wanna try this. I'm sick and tired of the pain!!! Any suggestions?

Oxygen at 25lpm or higher,  non-rebreather mask.

   potter

Potter, do you know if medicaid covers an o2 tank? I have medicaid/ staywell in the state of Florida.

No clue.

     Potter

YOur other message said he gave you Midrin and Imitrex.
Midrin is not suitable for Cluster and raises the question of whether he reall is skilled in headache. All you do is ask him directly about his training & experience in headache.

You should have been give a preventive med along with the Imitrex. Prevent. are used for the long haul and reduce the frequency, even stop a cycle.

Print out the PDF file below. Use it to discuss treatment options with him--

then give some us some feedback.

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I responded to your other post before seeing this. The PDF that Bob gave you is the gold standard for treatment info. If oxygen is not covered, it's not too expensive. I had kasier for years and they wouldn't cover it. My E-Tanks rented for $4.50 a month, $12 per refill. The regulators and masks you can score for $30-50. If you go the welding oxygen route it's even cheaper.

Joe

You could make it an economical stop and ask him for as many expensive triptan samples as he can possibly spare.

Dennis,

Ask your doctor for a lab test of your 25-Hydroxyvitamin D, a.k.a. 25(OH)D levels.  This is the serum level metabolite of vitamin D3.  You're likely vitamin D3 deficient.  That's a safe bet as most of us are deficient in vitamin D3 unless we take supplements.  We just don't get enough UVB from direct sunlight.

The "normal" reference range for the serum concentration of 25(OH)D is 30-100 ng/mL.  However, all the CH'ers with active CH, who have gone in for this lab test, have had their results come back as deficient or ≥42 ng/mL.

Moreover, CH'ers who have taken the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and gone pain free or had a significant reduction in the frequency and severity of their CH... and then gone in for this lab test, have all had the results come back at ≥60 ng/mL.

The efficacy of this regimen is holding steady with around 70% of the CH'ers who try it experiencing a favorable response...  It also appears to be equally effective for both ECH and CCH types.

If your doctor agrees to this lab test, tell him you'll want to supplement with vitamin D3 at 10,000 IU/day.  If he pitches a hissy fit, make sure you take along a printed copy of the attached study by Garland et al.  It suggests a daily intake of 10,000 IU/day and the abstract concludes with the following statement:  "Universal intake of up to 40,000 IU vitamin D per day is unlikely to result in vitamin D toxicity."

You've already received suggestion on the second thing to ask for...  an Rx for oxygen therapy.  Ask that the Rx be written for an oxygen flow rate of 25 liters/minute, but be prepared for push-back so settle for 15 liters/minute...  You can always get your own regulator capable of higher flow rates...  You'll need a flow rate that supports hyperventilation and that works out to a minimum of 25 liters/minute or better yet, a regulator capable of 40 liters/minute or higher...

I know that may sound like a high flow rate... it isn't.  It's very safe and lots of us use flow rates this high without any problems.

Take care,

V/R, Batch

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