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Cluster Headache Help and Support >> Cluster Headache Specific >> 2 questions I guess
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Message started by starlight on Nov 20th, 2010 at 5:15pm

Title: 2 questions I guess
Post by starlight on Nov 20th, 2010 at 5:15pm
I had been doing well the past 10 days since this cycle started managing my HAs (which come only at night so far) with melatonin/benadryl or melatonin/dramamine.  Only problem is (and this happened last night) that after day two there have been 3 times when the headaches broke through and when they do it is 4 headaches that break through not one or two.  I don't know it this is b/c of the benadryl or dramamine losing it's affect from being used several nights or I noticed that the headache breakthroughs happen on rainy or at least totally cloudy nights.  My other quandry, leading up to my question, is that when the HAs break through the first will be at 1ish am or like last night 2:30 am, oxygen aborts it without it getting out of control but I will be WIRED afterward.  WIDE AWAKE.  Then the headaches will come even if I am awake which for the most part I am after the first strikes.  Does this happen to anyone else that when they wake with a headache they are WIDE AWAKE after getting rid of it with O2 even if they have melatonin/benadryl or whatnot in their system?
Second question is can a person take benadryl with verpamil for the reason that I am thinking of taking it tonight (verapamil) but also would like to just try to hopefully get sleep with the benadryl? 
Confused, tired, and very appreciative of anyone who reads through my rambling and has any insight.  Thank  you and hope all are well.

Title: Re: 2 questions I guess
Post by Bob_Johnson on Nov 20th, 2010 at 5:24pm
You can't get any help with Verap. taking it for one night. It requires constant dosing for a couple of weeks before the body begins to respond to it and, even then, some dosing adjustments may be needed.

Melatonin is ranked as only modestly useful for CH. If it continues to not work, then it's time to consider other Rx meds with greater effectiveness.

After an CH attack I can't imagine not being wired nor being able to not get back to sleep easily. It would take a potent med to knock you out at that point.

Title: Re: 2 questions I guess
Post by bejeeber on Nov 20th, 2010 at 5:39pm
Hey Starlight,

I don't have any personal experience with higher doses of melatonin, but some folks around here have been reporting they had to go as high as 18 mg or so with it before finding consistent success avoiding the night time hits.

I wonder if an herbal sleeping aid, such as the type that has valerian, skullcap, eitc. in it might help you get back to sleep? Those definitely work for me for general sleep issues.

Title: Re: 2 questions I guess
Post by starlight on Nov 20th, 2010 at 5:43pm
Bob,

Thanks--it is good to know I am at least not crazy that I am having lots of trouble falling back asleep after the 1st hit--I used to have somewhat the ability to fall back asleep at times but then again I used to be better in general at falling back asleep after waking up at night for whatever reason.
I am thinking I should maybe give verapamil a try even if the effects aren't going to be immediate--but do you know if it is OK to combine it with benadryl?

Title: Re: 2 questions I guess
Post by starlight on Nov 20th, 2010 at 5:46pm
Thanks bejeeber,

Maybe I will fiddle with the melatonin dose--I did need to take a pretty high dose last cycle.  I am just befuddled by this weird morphing cycle where I seem to have it under control and then it lashes out with 4 headaches--I guess 4 is the magic number. 

Title: Re: 2 questions I guess
Post by Brew on Nov 20th, 2010 at 6:16pm
Yes, you can combine a regimen of verapamil along with one of diphenhydramine. I don't believe there are any contraindications.

Title: Re: 2 questions I guess
Post by Ginger S. on Nov 20th, 2010 at 6:38pm
According to my Neuro yes you can take benadryl with verapamil.

Title: Re: 2 questions I guess
Post by bejeeber on Nov 20th, 2010 at 7:51pm

Layla328 wrote on Nov 20th, 2010 at 5:46pm:
...this weird morphing cycle where I seem to have it under control and then it lashes out ....


Unfortunately many of us have found that even after many cycles with very consistent behavior, the beast will suddenly decide to try all kinda new tricks without notice.  :(

Title: Re: 2 questions I guess
Post by starlight on Nov 20th, 2010 at 8:50pm
You guys thanks--so happy I can take benadryl with the verapamil.  NEED sleep.
Oh and bejeeber, you're not kidding--I give up with trying to figure it out anymore!

Title: Re: 2 questions I guess
Post by Bob_Johnson on Nov 22nd, 2010 at 6:59am
Since Verap is a prescription med you will have to work with your doc on dosing, etc. Print out this protocol and give to your doc, using it as a tool to discuss how to proceed.
====

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.


Title: Re: 2 questions I guess
Post by starlight on Nov 22nd, 2010 at 8:40am
Hi Bob,

Thanks so much for the article on verapamil.  I started on verap 2 nights ago--only on 120 mg to soon work up to 480 mg.  It is interesting about the 3 divided doses in the article with the larger dose taken before the HAs genrally hit.    Starting tomorrow supposed to start taking it twice a day.  I will have to ask the doctor when I see him again in a few weeks.  But it does make so much more sense to take the larger dose before bed if that's when HAs hit.  Well, thank you for the article--we'll see if this stuff starts working when I get up to 480 mg.

Title: Re: 2 questions I guess
Post by Brew on Nov 22nd, 2010 at 10:04am

Quote:
we'll see if this stuff starts working when I get up to 480 mg.

How about, "We'll see if this stuff starts working soon."

480mg is not a magic gateway. If there's one common theme around this place it's that our bodies are different, and we can each react very differently to the same set of stimuli.

Your magic number may be 240 or 360 or 600 or....

Title: Re: 2 questions I guess
Post by starlight on Nov 22nd, 2010 at 1:47pm
Very good point Brew, and hoping it will start working at the lowest dose possible b/c this stuff is not exactly putting a spring in my step (but then again neither was the 4 HAs starting at 1-2:30 am).

Title: Re: 2 questions I guess
Post by Guiseppi on Nov 22nd, 2010 at 1:49pm
Hopefully the doc already told you, but really kick up the fiber intake as constipation is a common side effect. :( Hoping it kicks in soon for ya.

Joe

Title: Re: 2 questions I guess
Post by starlight on Nov 22nd, 2010 at 9:16pm
Thanks Joe--yep the doc did mention that and will do with upping the fiber.  Thanks for wishing me well.  Will let people know how things go with the verap.               

Title: Re: 2 questions I guess
Post by wimsey1 on Nov 23rd, 2010 at 7:23am
The melatonin debate is an interesting one. I know I take 10-15mgs/night, at least I did up to three nights ago when I ran out and didn't replace the bottle right away, and I am on verapamil (400mgs). For those three days, I noticed a low KIP hit each day I didn't take the melatonin at night. I use an extended release form, so I'm thinking it maybe had an effect past the nighttime cycle? I'm back on 10mgs melatonin so we'll see what happens. And wired after a hit? I agree with Bob...how could you not be? Blessings. lance

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