well after much research and doctor visits this is the best i can come up with at this point, feel free to chime in and give advice, ; i can take it i have ch's ;)

1. my prevents- verapamil     vitamin d3-1000iu x 8
2. transitional meds- prednisone
3. abortives- tramacet(pretty useless) zomig nasal 5mg

i will update the mg's a little later, my wife is asleep and my meds are in the bedroom. this is the best i have come up with so far. i have an appointment in oct to see a headache specialist in vancouver b.c. zomig works ok. but if i remember after a while when i hit peak clusters it tends to not be as effective . any advice appreciated
edit- i hope to get o2 soon..... i hope !!!!

ok so had cluster while typing original post..... phone rang twice couldnt answer it wife woke up cluster is going away,

verapamil 80 mg  twice daily
prednisone 50 mg once daily for a week

right now i am splitting the vitamin d3 into 2 groups of 4000 iu a day should i take it all at once ?, the reason i split it up is that i take other meds for dvt and thyroid and was worried about interections
thanks all

Welcome!

It seems that your dose of the Verapamil is rather low for preventing CHs.  Most of us go higher, in excess of 320mg a day.  When it worked for me, I was taking 680mg per day.  Then, after a few years it became ineffective and I had to try other preventatives.  They included depakote and topamax.  I did not try lithium although it can be effective. 

When I have been prescribed prednisone, it was a taper while waiting for the preventatives to get into my system.  I would start at 80mg for three days and then 70 for three days and so on.  While I was on the prednisone, not only would I not get hits, I would ramping on the Verapamil or Topomax or whatever prevent du jour we were trying.

This year, I started the D3 regimen and so far, no hits.  I am episodic with July/August and December hit-free.  My episodes include 3 hits per day and they last about 2 hours when not killed.  So, even though we have had the weather and conditions that usually bring on the beast, so far, not. (I live in the northeast US). Check out the thread in medications called 123 days pain free...

For abortives, I use: Rock Star; O2; Imitrix injections.  Those generally work, for me.

A widely used protocol. Your doc will recognize the source and author, worth running by your doc if he balks at a higher verapamil dose, yours is way low:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented


joe

23,

Take all the vitamin D3... at least 10,000 IU/day with the largest meal of the day.  This can increase absorption by over 50%.  If you'll see your PCP about obtaining the 25-Hydroxyvitamin D, a.k.a 25(OH)D lab test and have the results in hand...  if they're less than 30 ng/mL, you may be able to use a more aggressive vitamin D3 dosing schedule like 25,000 IU/day plus a 50,000 IU loading dose once a week on top of the daily intake.

Be sure to take at least 1000 mg/day Omega-3 Fish Oil and all the vitamin D3 cofactors each day: 500 mg/day calcium. 400 mg/day magnesium 10 mg/day zinc, 1 mg/day boron, 100 µg vitamin K2 and Vitamin A (retinol) 900 mcg/day (3,000 IU/day).

Talk with your PCP about this regimen and show him a printout of the following link:

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

Take care and please keep us posted.

V/R, Batch

thank you for the replies will call my doctor and see about getting the meds increased, and adjust the frequency at which i take them etc also will look into the prednisone taper and so far i am taking well to the vitamin d3 so an increase in amount will be started tomorrow, its a lot of work balancing life and ch's.... whew. but this group has given me the ability and knowledge to meet them head on (no pun intended) ;), thank you all, have a parent teacher meeting tonight that will last about an hour or so, hoping for no ch's

Crossing my fingers you get thru it without beasty making an appearance. ;)

Joe

Are you avoiding O2? Just curious. Blessings. lance

23,

You live in a beautiful city...  I live 64 miles South of you in the center of Puget Sound near Bremerton, WA...

Howz the head today and how did the PTA meeting go last night?

Take care and please keep us posted.

V/R, Batch

hi batch, head today is a little woozy from headaches and meds pta meeting went well ! was kinda like speed dating with teachers lol and yes it is a beautiful city must be where you are too as we are so close to each other  :)
cheers

oops forgot to update my treatments lol,
finally picked up my o2, so far it is working fairly well while i find my lpm, higher lpm seem to work best, but really goes through the o2 fast as it is the small portable tank. so far me likey alot  :D