Luckily, my CH has been pretty well controlled with a combination of Gabapentin and Oxcarbazeapine (yeah yeah, correlation causation).
Anyway, taking so many pills has started to make my stomach upset sometimes. It's possible it's some combination of the drugs, but I've been doing 2 pills of D3, 1 of B12, 1 1/2 of Celexa, 1 Gabapenint and 1 Ox at breakfast, then 2 at lunch, then a handful at bedtime so I can sleep.
Is there some medication that lasts long enough that I would only have to take it say, once ever three days or once a week?
I'm just looking for something that will allow me to go painfree without having to down bottles andbottles of pills all the time.

Below where you posted this is a long thread titled "123 days and I think I know why"  Even though it's many, many pages long you can get the drift of this newest treatment.  It seems to have helped many, and it just may be your magic bullet for the problem you are experiencing.  At the very least it can't hurt to try.

Quote:

I'm just looking for something that will allow me to go painfree without having to down bottles andbottles of pills all the time.

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to be perfectly honest, I'm considering it. I'd like to talk to someone who has done it just to answer my questions before I go forward.


My doc said he was worried about changing anything until I've been PF and CH free for six months.
I asked again, as usual, about my facial pain and if there were anything that he could recommend for help getting to sleep if it wakes me or making it so I can do things during the day.
He told me to avoid touching it and using the lidocane when I can. He then told me about benadryl cream, which he said may help it may not. Then he prescribed Zanaflex which is a muscle relaxant. He siad that it would help relax the muscles around the nerve which would hopefully take away some of the pain, and would help me sleep if I woke up in the middle of the night with some.
Anyone have success with it?

If you have busted before, please message me and let me know if we can use AIM or something so I can get some questions answered.

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Hi Idorko,
the link above is for the D3 regimen designed by BATCH and that is successfull for 80% of CHers, i know you said you don't want to take lots of pills every day but at least these ones are supplements as oppose to drugs/medications. I have been on the regimen for 22 days and have been pain free for the last 6. It seems that the regimen has aborted the cycle.
All the best  :)

Quote:

If you have busted before, please message me and let me know if we can use AIM or something so I can get some questions answered.

Go over to the clusterbusters message board. There are hundreds of people who have successfully busted over there and would be more than happy to engage your questions.

thierry wrote on Apr 18^th, 2013 at 10:03am:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Hi Idorko, the link above is for the D3 regimen designed by BATCH and that is successfull for 80% of CHers, i know you said you don't want to take lots of pills every day but at least these ones are supplements as oppose to drugs/medications. I have been on the regimen for 22 days and have been pain free for the last 6. It seems that the regimen has aborted the cycle. All the best  :)

It's not that I'm taking prescribed medication, it's that I'm taking pills. I've looked into Batch's regimen and talked with him about it in PM and my levels of D3 and B12 are considered normal, or so my neuro has told me. I'm willing to give it a try, but not until I can change things with my current meds because they've worked well for me thus far.

@Brew, thanks.

These comments are not aimed at your neuro but they do summarize many comments we hear about folks neuros and reflect formal studies about education/training in headache which they, as a group, receive.

Their formal medical training in headache is remarkably limited resulting in them,as a group, using out of date treatments and/or trying a variety of meds which are not consistent with best practice. I.E., possible to end up with a bundle of meds which are not, as a package, very effective. (Some years ago, studies revealed that many folks took several years and multiple doc changes to find a effective doc. Better now, if you seek out well trained docs.)

A goodly % of us, using the well researched meds for Cluster, achieve good control with two classes of meds--preventive and abortive. (The PDF file, below, is the latest evaluation of the most commonly used meds.)

We, as a group, have moved to recommending finding, if at all possible, a headache specialist. It's entirely possible to reduce your total med load and get better outcomes, in many situations.)
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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.
=========
Another confounding factor is the growing recognition that there are a numer of disorders, some rather serious, which mimic Cluster but which are not headache disorders. So a good diagnostic work-up vs. reading a check list of symptoms and assuming is wise, especially when you have complex picuture which has not resolved inspite of your best efforts.)

Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
========

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Idorko,

There are several vitamin D3 dosing strategies...  We know that 10,000 IU/day vitamin D3 will result in a 25(OH)D serum concentration of 80 to 90 ng/mL after 4 to 5 months.  We also know that any 25(OH)D serum concentration above 60 ng/mL puts you in the "Green Zone" where most CH'ers can expect a therapeutic response with a significant reduction or complete cessation of CH.

Remember, the normal reference range for 25(OH)D is 30 to 100 ng/mL and that too many physicians will say your 25(OH)D level is normal at 31 ng/mL...  That may be true to prevent rickets or osteomalacia... but it won't do squat to prevent cluster headache.

As 10,000 IU/day works out to 70,000 IU/week...  and it's the number of pills you're taking daily that you don't like...  You can take 70,000 IU once a week and enjoy the same results.

Talk to your neurologist about ordering some 10,000 IU vitamin D3 softgels.  Puritan's Pride offers them for around 6 cents a pill/day or 42 cents a week if you want take 7 softgels once a week.

You can get this price if you buy in quantity at the following link:

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You'll still need the cofactors, but doubling up on them every other day is likely not a good idea... A 10,000 IU vitamin D3 softgel along with a citrical plus tablet and a Centrum Silver or the Safeway brand Century Senior 50 + formulation tablet once a day should be adequate. That's three tablets...

I'm not sure the Celexa (Citalopram Hydrobromide) or Gabapentin (Neurontin) are doing you much good... 

Celexa is an SSRI... and its efficacy in treating primary headaches is questionable...  Evidence level B, lower quality randomized controlled trial (RCT). 

No gold standard RCTs for neurontin either...  BMJ indicated one small study, evidence level B, where 900 mg/day worked to prevent CH for 8 episodic CH'ers and 4 chronic CH'ers... Unfortunately, the results have yet to be repeated in a gold standard RCT.

My experience using neurontin to prevent my CH was marginal to unsatisfactory...  It worked for a couple weeks but I needed to titrate up on the daily dose in order to maintain any preventative effect... 

At 300 mg/day I got a great 2-martini buzz that made driving unwise...  at doses of 300 mg/day and higher, my ankles got so swollen I needed to take hydrochlorothiazide (HCTZ) as a diuretic... 

At that point the risk-reward ratio made it clear I had to get off the neurontin...  Its side effects posed a greater health risk than CH and I was still getting burn-through clusters... 

I told my doctors at NIH I wanted to taper off the neurontin and control my CH with oxygen therapy...  They agreed...  10 days later I was completely off the neurontin, my ankles were back down to normal size and I no longer needed to take the HCTZ.

Had I known then what I know now about the CH preventative capacity of vitamin D3... I would have gladly given my body what it needed to heal itself and not taken the prescription medications with all their onerous side effects...

This isn't rocket science...  Ask your doctors to stay on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and to come off the Celexa and Neurontin...  If your CH return you can always start taking them again...

Take care and please keep us posted.

V/R, Batch