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06 Sep, 2010 - 6:29 pm

Hi all,

I'm taking 360mg of Verapamil
and my doctor said that 360 was the max dose. Is this right? I read somewhere on here (and now I can't find it) that some people take much higher doses than this. Also, should I keep taking it now that I am 'out of cycle' and for how long, for ever? I am also on Endip (Endep?) which is supposed to help. Anyone else on this?
I suppose it's just finding the right combination or everything and sope that it all works
Thanks again

Sean

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06 Sep, 2010 - 9:24 pm

Hi Sean,
Doctors can be a little precarious when it comes to medications such as verapamil, the dosage of 360mg would be the max dosage if it was being used for blood pressure type conditions.
Maybe if you print this article from Dr Goadsby and take it to your doctor it may help.

http://www.ouchuk.org/html/news/Precriber.pdf

ABSTRACT: Some patients with long bouts of either ECH or CCH will require preventive treatment over many months, possibly even years. Verapamil and lithium are particularly
useful in this setting. Verapamil is the preventive drug of choice in both ECH and CCH. 24-26 Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, and dosages commonly employed range from 240 to 960mg daily in divided doses.
Verapamil can cause heart block by slowing conduction in the atrioventricular node.
Observing for PR interval prolongation on ECG can monitor the potential development of heart block. After performing a baseline ECG, patients are usually started on 80mg three times daily and thereafter the total daily dose is increased in 80mg increments
every 10-14 days. An ECG is performed prior to each increment. The dose is increased until the cluster attacks are suppressed, side effects intervene or the maximum
dose of 960mg daily is achieved.
Other drugs Though topiramate, sodium valproate, pizotifen (Sanomigran) and gabapentin are often used, they are of as yet unproven efficacy.

It is generally tapered down when not in cycle, the problem with this is knowing when to do this, if it's tapered to soon the beast can come back with a vengence. The combination of verapamil an lithium is also sometimes very effective for people who o not respond as well to either medication.

Endep is mainly used for nerve pain aspects, depending on the dosage it can also be used for it's antidepressant effects and as depression is such a major factor with sufferers, many medical professionals believe it to be beneficial despite the fact that there has been no studies proving it's benefits in Cluster headache treatment.
I'd have to say that in our experience I am not a fan, it does have some very serious side effects when used with other mediication's commonly used for clusters.

ABSTRACT FROM: http://www.medicinenet.com/amitriptyline/article.htm
DRUG INTERACTIONS: Amitriptyline should not be used with monoamine oxidase inhibiting drugs. High fever, convulsions and even death can occur when these two drugs are used together. Epinephrine should not be used with amitriptyline, since together they can cause severe high blood pressure. Alcohol blocks the antidepressant action of amitriptyline but increases its sedative effect. Cimetidine (Tagamet) can increase blood levels of amitriptyline and its side effects.
SIDE EFFECTS: Sometimes troublesome side effects include fast heart rate, blurred vision, urinary retention, dry mouth, constipation, weight gain or loss, and low blood pressure on standing. Rash, hives, seizures, and hepatitis are rare side effects.

Amitriptyline is used with caution in patients with seizures since it can increase the risk of seizures. Amitriptyline is used with caution in patients with prostate enlargement because of the risk of increasing retention of urine due to the inability to urinate. Amitriptyline can cause elevated pressure in the eyes of certain patients with glaucoma.

Antidepressants increased the risk of suicidal thinking and behavior in short-term studies in children and adolescents with depression and other psychiatric disorders. Anyone considering the use of amitriptyline or any other antidepressant in a child or adolescent must balance this risk with the clinical need. Patients who are started on therapy should be closely observed for clinical worsening, suicidal thinking or behavior, and unusual changes in behavior.

If amitriptyline is discontinued abruptly, dizziness, headache, nausea, and restlessness may occur. Withdrawal symptoms may occur when even a few doses are missed. Therefore, it is recommended that the dose of antidepressant be reduced gradually when therapy is discontinued.

Hope this has been helpful! Wishing you PFD.

Regards Shell

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07 Sep, 2010 - 2:30 am

hi shelly , once more , thank you from the bottom of my heart , no one ever tells me any of this stuff and its great to be able to in to my doctors 'armed and dangerous '. Cheers , sean x

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07 Sep, 2010 - 9:47 am

Hi Sean
Just so you know I take 160mg Verapamil twice a day with Topomax 200mg twice a day. What I have to watch for is a drop in blood pressure with the Verapamil. With any medication you need to be watchful for the side effects. As Shell has so admirally has shown you this information is available to you.
When drugs are prescribed for me I first ask the doctor what they are designed to do for me and get a feel for them and what I should expect from them. Too often I think we leave the rooms confused (I now go in with pen and paper at the ready). When I get home I get on the internet and then check the fact sheets that are available on line. In the early days pharmacists used to print these out and hand them to patients! Now not all people like to read these as then they start to imagine some of the side effects that they read but I reckon that is bollocks (well in my case anyway). Then I do a bit more research into the use of the drugs as Shell does. I reckon my body. For instance if I use more Verapamil than 160 bd, you will be picking me off the ground as my BP plummets like a bird to the ground! You need to get to know your body.
I would be very loathe to stop by 160mg BD just in case it made by present situation worse as I am a chronic sufferer at this stage--for you, take for the rest of your life. Only you can make that call. If you decide you want to stop--again you need to discuss with your doctor, you should not stop any medication without discussing the rammifications, a lot need to be tapered off, not sure of this one--it could be OK, but I'm neither a doctor or a pharmacist. Defer and refer to the experts. That is what we pay them for.
Not on Endep.
Cheers and good luck
Heather

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07 Sep, 2010 - 9:01 pm

Hi Heather,
Are you on the slow release verapami? I found this info which I found quite interesting as many sufferers are on the slow release which is not as effective as the short acting tabs.

Quote"
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.
End Quote"

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).

Hope this is helpful!
Regards Shell

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08 Sep, 2010 - 4:18 am

Strange how things are. I'm on 25mg Amitriptyline daily at bedtime, mainly for it's mild sedative properties. my Neuro says interaction won't be a problem, and so far he's right. I must admit i'm not dilligent in taking it, probably 4 days out of 7, which is probably not the best either.

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08 Sep, 2010 - 11:53 am

That is interesting Shell, I am slow release! Certainly could be something to review with neuro next time around. I have to be a little careful of BP. But would be good to sort of start afresh as a new trial me thinks a little later down the track. Certainly food for thought. Thanks.

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