Hi everyone, I need some advice. I am seeing the neuro on Thursday and I want to be fully prepared to cover all my ch issues. I need more imitrex injections. I want these to end NOW! I need some sort of pain medication just to help me deal with the minor ones. I am a teacher and I don't want my class to see me have one. Too late for that actually. I had one the other morning as soon as I got to class and ended up leaving twenty minutes later and going to ER. Been having multiple hits at night of about a kip 9 or 10. Taking verap, propanolal, imi injections, imi pills, O2, Vicodin, was taking butorphanol spray but doc says taking too much and doesn't want to lose license. Wife is scared, kids are scared, In laws are praying, I'm praying,( this actually worked last night). Tried to get doc to admit me to hospital but he wouldn't. Worried because gotta be in class tomorrow and have no imitrex left. This totally sucks. I can't take this much longer. I did meet with neuro a few months ago when I wasn't having them. He seems very knowledgeable about ch and he is just a really nice old man. I want this appt. to go well. Any advice is appreciated.

Danny Boy,

Take a look at the following link.  It's the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  It was prepared by a team of experts in the field of neurology and in treating patients with cluster headache.

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

If the meds you're being prescribed are not on the list of acute treatments/abortives or preventatives for cluster headache like vicodin which can do more harm than good, your neurologist is going against the standard practice.

The preventative treatment most of us (90%) respond to is prednisone.  This is usually prescribed as a 10-day to two week taper as staying on prednisone can and will pose other problems.  Most of us get complete relief from cluster headaches while on this taper but they return with a vengeance unless another preventative such as verapamil is also started and at therapeutic levels when the pred taper is complete.

I've met with Dr. Arne May and Dr. Peter Sandor who were on the EFNS task force that developed this standard of care and the above prescriptions are part of their basic strategy in treating patients with cluster headache after a careful exam and tests to rule out other underlying causes or co-morbid conditions.  They also prescribe oxygen therapy at 15 liters/minute or higher as the first acute treatment and abortive of choice along with one of the triptans as a bailout or escape medication should the oxygen therapy not be able to abort an attack.

Finally you might want to ask your neurologist to test your 25(OH)D3 levels.  This is the vitamin D3 metabolite most frequently measured to determine if you are vitamin D3 deficient.

A growing number of physicians use the following 25(OH)D3 levels in nmol/L) as a practical guide for diagnosis and management of vitamin D3 difficiencies:

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries

If you are vitamin D3 deficient, it can take between 5,000I.U. to 10,000I.U. of vitamin D3/day to get levels back up in the optimum range and keep them there.

There are a couple links you may want to read through to better understand what can happen with a vitamin D3 deficiency and suggested dosages needed to maintain optimum levels:

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

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

Taking vitamin D3 is not a cure for CH but there's really no downside to taking it in doses of 5,000I.U. to 10,000I.U.  For example, when exposed to direct sunlight for as little as 30 minutes in a bathing suit, our skin can make up to 10,000I.U. of vitamin D3.  Moreover, a number of us are seeing a reduction in the frequency, intensity, and duration of our CH when taking a daily regimen of 10,000I.U. of vitamin D3, 2000mg Omega 3 Fish Oil, and calcium citrate supplements with magnesium and zinc. 

Hope this helps.

Take care,

V/R, Batch

Thanks Batch, I will definitely look at the multi media. Vitamin d deficiency makes perfect sense. We don't see much sunshine in Minnesota in January/ Febuary.

I'm concerned that your list of meds suggests the doc doesn't know how to treat headache, most especially cluster.

Do you have the option of finding a specialist? Before getting into any treatment options here, I'd like to see you with a skilled doc.
===
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.

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

Read this link, many can abort with just 2 mg of trex, give you three times the aborts from a single injector.

I'm with Bob, the narcotics may be causing a lot of your attacks. What dose are you at with the Verapamil? Some have to go as high as 960 mg a day to get relief. Talk to your doc about adding lithium, we used to call it the "Chronic Cocktail." Lithium and Verapamil together would help when either alone wasn't cutting it. Don't sweat the Hollywood stereotype of a mouth breathing moron on lithium, I did a 30 year career in law enforcement using lithium as my prevent. At the doses we use it, (I was at 1200 mg a day) you wouldn't know I was taking anything unless I told you.

Do look into Batch's post. In my last cycle, 02 started failing me. That had NEVER happened before and it scared the hell outta me. I started this regimen on Batch's suggestion.

Magnesium, Zinc, Calcium Citrate with Vitamin D, washed down with fresh lemonade, he suggested up to 4X a day. I went with 3X a day and in less then 36 hours, 02 was kicking butt again.

Good luck with the neuro, sounds like you're in a tough spot right now. :'(

Joe