Good approach is to educate him with his own literature: print the PDF file, below, and give it to him.

Expect that folks will tell you about their experience with Lithium. It has a long history and so benefits, side effects, etc. are well known.
==
Message posted here:

Experimental preventive. As of  3/16/10, no medical information on PubMed but this information from Dr. Goadsby.
He reports that docs in the Los Angeles area have been trying as a preventive when the standard ones are not working and that good results.

Namenda (memantine hydrochloride) used for Alzheimer's patients and has more use with migraine.

For Cluster, clearly experimental now. Start low, Val found relief after working up to 15mg. (I should not jump to use unless you have exhausted the standard preventives.)

Information from: Val, on 3/16/10, in medications section.
===
Nice that you like your doc but, with tough situations, having a specialist on the team is worth considering. This is especially so because most docs have little useful education/experience dealing with Cluster. At the very least, might ask your doc if a consult with a specialist would make both of you more comfortable.
--
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

I'll give you my experience of lithium. Well over 25 years as a prevent and pretty much zilch on side affects. I think it was in my mid 20's we started using it, I'm 52 now, episodic sufferer. We initially used 900 mg a day while on cycle, this would block 80-90% of my attacks. In my mid 40's we had to kick it up to 1200 mg a day as it was losing its effectiveness. At 1200 it still blocks 60-70% of my attacks. The only side efefcts I've had are you urinate a LOT the first 2 weeks, so pay attention to the literature to increase fluid intake. And there is a little lethargy, but nothing a cup of coffee won't alleviate.

I'm fortunate in that CH is my only medical issue that I take any medication for so I don't have "mixed med" issues so many others have to worry about. As Lance mentioned, some have to go with a "cocktail" of meds. The most common I've seen posted on the board is Verapamil and Lithium together. Given your issues it's definitely somehting you want to move ver slowly with. Wishing you luck and some pain free time really soon.

Joe

The dosing for lithium is based on how your body processes it, not on your body size. Different people just process the salt differently. When you first go on lithium, you start at a fairly low dose, say 300 a day for a few days, then you go in for a blood draw. Then you kick it up to 600 mg, then another blood draw. You continue to do this until you reach the "therapeudic" dose of lithium. All this is done while watching for any toxicity side effects. They're pretty obvious and easy to avoid with the initial close monitoring.

Now I start at 300 for a couple days, then 600, then 900, then finally 1200. Then I go see my neuro for a blood draw to make sure this level is still working.

It's certainly not an "experimental" med, but it is being used for something other then its labeled use. I don't need a neuro anymore for my CH treatment as I have it dialed in, and can use my GP to precribe the meds I use. The problem is, most GP's are scared to death of Lithium!!!! So they give me a referral to a neuro so they don't have to deal with the lithium. So I'm not suprised your doc is spooked by it.

Joe

IMHO, lithium toxicity is the biggest concern. Stop taking it and get to a hospital immediately if you have:

1. Persistent diarrhea.

2. Vomiting or severe nausea.

3. Coarse trembling of hands or legs.

4. Frequent muscle twitching such as pronounced jerking of arms or legs.

5. Blurred vision.

6. Marked dizziness.

7. Difficulty walking.

8. Slurred speech.

9. Irregular heart beat.

10. Swelling of the feet or lower legs.

Avoiding toxicity

Be active in your own care. Lithium medication has to be managed and you have to be in the driver's seat.

1. ALWAYS take your blood tests exactly when your doctor advises.

2. PREPARE correctly for your blood tests. This means that for 4-5 days before testing don't forget any doses and don't take any extra doses. Also, your blood test should be done in the morning as close as possible to within 12 hours of your last dose.

3. Drink plenty of fluids each day, especially water and juice.

4. Do not go on any low salt diets.

5. Be careful about sweating too much or anything else that could promote dehydration.

Re. meds & your records: important for the doc to have a sharp, clear Dx of Cluster & the whys in the record and to note which meds are used for Cluster.

It's not unusual for meds to be used for purposes other than for the conditions under which it was first approved. Important only that each med be associated with the condition for which YOU are using it.

Japanzaman, yes, I've had some success with prednisone, but only when I had a high enough dose.  When I called and begged for another pred taper, I got 30 mg--as in, 30 1 mg pills.  Naturally that wasn't helpful at all.     Pretty sure my doctor won't go for another taper, especially with surgery coming up.  Certainly it wouldn't hurt to ask.

Well, here I am 10 days from surgery. I was fortunate enough to develop an ear infection, so I'm on amoxicillin-clav for a week to dry that up.  I tapered verapamil (360 mg/day) on my own, as I just couldn't walk comfortably with my legs so swollen. Couldn't even get my shoes on! Ugh.  I continue pounding the Vitamin D at 50,000 IU per day (yes, I know, it's a LOT... so far no side effects, just no results). We'll see what Doc has to say on Monday. 

I'm sorry you are still searching for something that works. For what it's worth, I have not noticed the Vit D3 regimen doing much good for me either. In truth, not much has worked to keep me from having any hits at all. I just manage to manage them, and I am grateful I have aborts that work: O2, Imitrex and Migranal. Good luck with your surgery. God bless. lance

I'm on amitriptyline (200 mg), cyproheptadine (20 mg BID), and verapamil (can't remember dosage offhand, but sounds like its not an option for you anyway).  You may want to look into those.  Cyproheptadine is an uncommon cluster treatment but it works for me.  It's generally prescribed as a children's antihistamine, so I think it's pretty low side-affect for most.  None for me.

I'm chronic but on the rare occasion that a cycle breaks through my year-a-round "3-way" above (yes, it sounds way more exciting that way than it really is  ) my neurologist added 10 mg of melatonin, which kicks in after only 2 doses.

I completely agree you should see a neurologist or headache specialist.

I don't know about VA, but down here in NC, I know we have Dr Finkel.  He's attached to UNC-Chapel Hill, one of our main teaching hospitals/specialty hospitals.

I don't have to the exact link (I'm on my phone at the moment), but there is a list of doctors, supplied by OUCH, that are knowledgeable of Clister Headaches.  I think someone will be around soon to supply the link.  That should help you narrow down a specialist to your area.

Hope you find one quickly, finding Dr Finkel for us has been a life saver for my husband and I.

Akina, I have a good friend who lives in your area and could host me if I need to come down to meet Dr. Finkel. So I'm really glad to have your recommendation. And if/when I do, I'd love to meet up with another head-banger... are y'all open to a meetup sometime? 

Mine will, up to a point. I have found doctors do not necessarily trust the tests and results of other docs, and frequently will want procedures done at their own hospital of choice. So I guess it sorta depends. Nice to be able to stand on shifting sand, huh? blessings. lance