Hello again,
       I've been in this damn cycle since Dec 20, last year. Tried many different meds over the last few months with no success. Started Verapamil April 7 and had some improvement after 14 days, have actually had a few PF days. Was so hopeful it would eventually end this madness. Brought in Oxygen 2 weeks ago. Have had some success with that as well. When it works I get 2 hrs of relief, sometimes it does nothing.
      Last week I felt a big increase in head pressure and and nerve pain/burn in my head and my left eye is constantly leaking and drooping bad again. Ugh! :P No big bangers just a constant pressure. Finally gave in and called my neuro on Tuesday this week, he returned my call yesterday, Sat. (he must be a very busy man). So he offered me a new med to try Rx: Nortriptyline. He said to give it a week and keep taking the Verapamil. I did some research and see it's often prescribed for treating migraine by increasing Serotonin levels. Just wondering if anyone has tried it for CH with any success? I don't recall seeing anyone posting any info on this one over the last few months so I'm very skeptical it will give me any relief but I'm so desperate at this point.
Desperate in Easton
Donna Mae      

When you are talking about meds it's helpful if you give dose/frequency info. Without this info it's a wild guess.
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So, issue is how much Verap are you taking?
Suggest you print out this protocol and use it to discuss your treatment with the doc.
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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).

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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.

Thanks Bob,
     I have that Verapamil study already printed. I haven't seen my Doc since May 10, only my 2nd visit with him. I did request Verapamil and Oxygen on my 1st visit and I was ecstatic he gave it to me.  At the time I thought the dosage was very low but I have high BP and take 2 other BP meds. Not so sure I can take a higher dose of Verapamil safely. I've had to closely monitor my BP daily.  I thought I was making progress on the verapamil 200mg, slow-release, but it seems to have lost it's effectiveness. I'm back to daily head pressure and nerve pain. Eye droop never went completely away.
      This new med Rx Nortriptyline 10 mg x 2 at bedtime. I did read that you need to slowly increase this drug up to a max of 100mg daily. I guess I'll give it a week and see if it does anything and call my Doc again.
       I'm still struggling to find something that will work for me and still struggling to find a Doc that will work with me.
Even more challenging when you have other health issues that require meds that can interfere.
       Still curious if anyone has used Nortriptyline HCL for Cluster.
Donna Mae

Years ago I was prescribed nortriptyline by a doc at the Dallas VA....I couldn't tolerate the side effects and had to DC it after a couple of weeks.

DD

Oh No! I read up on the side affects of nortriptyline, not good. But all drugs have very bad side affects. Hope they won't affect me too badly. Guess I'll find out soon enough!
Thanks Dallas
Donna Mae

There are side effects to every pharmaceutical. That doesn't mean we should not consider taking one necessarily. Sometimes they do help. For example, steroids suck in so many ways. But sometimes the can interrupt a cycle. As to nortriptyline, my headache specialist moved me from that over to amitriptyline. This, along with a much higher dose of Verapamil seems to be providing some preventative measure. I am still experiencing a remission from my previous 3 year chronic cycle, although I have had to battle shadows a few times. Donna Mae, have you tried using an energy drink, like Monster or Red Bull as a preventative? Blessings!

Hi Whimsey,
       Thanks for your response. And yes I do drink energy drinks, usually at work in the afternoon, and alot of strong coffee in the morning. Caffeine has definitely helped keep head pressure checked until this week. Nothing seems to be helping. At night I have to hold off so I can get some sleep. If you can call it that. Up 3 or 4 times, most nights give up and up by 3:30 - 4:00 am for the day.
        So glad to hear you are having good results from that cocktail. I will definitely keep that combo in mind for my next request if this one fails. Thanks again.

Donna Mae

Take the nortriptyline at night - it will help with the drowsiness. Take it about 2 hours before bedtime.

Can't say anything about it's effectiveness. Hubby took it for 5 weeks and didn't see any difference, except that it made him lethargic during the day.

Thanks for the info Adore. It is prescribed to me to take at bedtime I'm sure for that reason. Only been 3 days and so far. No bad side affects or drowsiness during the day. My head pressure seemed better today, alot less intense and less frequent hits. I've got my fingers and toes crossed.

Thanks again and God Bless

Donna Mae