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(Message started by: kcopelin on May 25th, 2005, 8:44pm)

Title: verapamil dosage
Post by kcopelin on May 25th, 2005, 8:44pm
I'm on 240 mg verap-looks like everyone else is taking way more-maybe that's why the beast will not leave me alone?  Those on verap-how many mg and how did your doc arrive at that number?  was it trial and error or based on body weight or what?
thanks
Kathy

Title: Re: verapamil dosage
Post by Kim Y. on May 26th, 2005, 12:27am
How long have you been taking it?  I was told you need to give it 2-3weeks to see if this dose works for you.  It is trial and error because each one of us is different and our bodies react differently to different doses.  Blood pressure is also a deciding factor.  Have to ensure you don't drop to low.

Welcome and hope I was of help to you.

Kim

Title: Re: verapamil dosage
Post by Bob_Johnson on May 26th, 2005, 7:33am
: 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).

Title: Re: verapamil dosage
Post by yikes-another-one on May 26th, 2005, 7:13pm
Just got upped to 360mg,
about 7 days ago.

Still no change.

4-8 headaches every darn day.

:'(


Title: Re: verapamil dosage
Post by Kris_in_SJ on May 26th, 2005, 8:32pm
Hi,

480mg/day - nothing else will do it for me.  Like has already been mentioned, it's a matter of trial and error.  If, after 5-6 days you aren't getting some lessening of frequency and/or severity, time to increase dosage.  There are many here taking 600mg or more per day.

Best wishes for PFDAN!

Kris

Title: Re: verapamil dosage
Post by kcopelin on May 27th, 2005, 11:09am
Thanks for your responses-am taking 240mg once a day-looks like the dosing was different in the study-makes sense.  
Kathy

Title: Re: verapamil dosage
Post by Kim Y. on May 27th, 2005, 2:07pm
;)No problem.  Hope you get relief soon.

Title: Re: verapamil dosage
Post by PerryGR on May 28th, 2005, 4:50am
Hello Kathy,


on 05/27/05 at 11:09:00, kcopelin wrote:
Thanks for your responses-am taking 240mg once a day-looks like the dosing was different in the study-makes sense.  
Kathy



Quote:
Verapamil comes as a regular tablet and as an extended-release (long-acting) tablet and capsule to take by mouth. The regular tablet is usually taken three times a day. The extended-release tablet and capsule are usually taken one or two times a day and should be swallowed whole. Do not chew, divide, or crush the extended-release tablet or capsule. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take verapamil exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor.

(quoting from: http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a684030.html )

I assume you're on the extended release tablet (as described above), you would need to discuss it with your doctor before altering dosing in any way.

About the initial question: I'm on 480 mg Verapamil per day, 120 mg (regular tablet) X 4 times a day, but i'm also on Lithium (600mg). It still is a trial and error process in my case- relief can be very elusive...

PFDAN to all,
Perry.

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 10th, 2005, 4:41am
I have been on 480 srl caps each am for 5 months with great results for the first 3 months. 2 months ago everything started up again but just not quite as strong as before taking Verapamil. One specialist wants to increase the dose but the GP refuses to write a script as she says my dose is already too high. Seems like every situation is totally different.
Cheers,
Kiwiinoz58

Title: Re: verapamil dosage
Post by LeLimey on Jun 10th, 2005, 7:22am
hi Kiwi nice to meet you! (even if it IS here...)
Why does your GP think its too high? There are people taking over 1000mg of it a day with no ill effects to my knowledge but it IS different for everyone, it depends on your bodies tolerances.
Have you had an ECG? If not have one at every increase to allay your doctors fears and print off info regarding verapamil from here to take to show your doctor.
If that fails I suggest you ask your neuro to write to her/him and get it that way!
Are you on any abortives as well as the verap? Tell us all a bit more about you so we can get to know you better.
I'm the quiet, polite, sweet and gentle person round here.......
Looking forward to hearing more from you!
Helen

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 10th, 2005, 7:19pm
Hi Helen, Great to meet you! I actually had my neuro's letter with me that day which asked for BP ECG etc to be checked and if normal to give me an extra script for 160mg. Everytjing was normal but she refused to give it to me saying the dosage is too high. It hasn't helped that I have moved to a small country town so perhaps they are not as familiar with the possibilities for this medication. I must admit though that even ny GP in the city didn't want  to increase the dose either. I sure wish I'd known about this site when I was suffering at my worst and noone knew what to do for me. Now I take mersyndol Forte when it starts which sometimes helps and when it's extreme I inject with Imagrin. Only prob is that it is not on our health scheme so costs me $135 for 2 refills, but it is the only thing that actually works. I am in a new relationship and all this starting up again is putting quite a strain on us. By the way I am not the quiet and retiring type, and love a good laugh ;;D
Cheers,
Jacqs (Kiwi)

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 10th, 2005, 7:37pm
By the way I should mention that it took 8 months of suffering from 10am till at least 6pm 5-6 days out of 7, plus being sent to 4 different specialists before finally seeing a neuro and getting diagnosed. He actually put me in hospital for a week and tried all sorts of different meds including oxygen. Prior to that of course I believed I was getting paranoid and the only person in the world to have this problem.
Cheers,
Kiwi

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 10th, 2005, 7:44pm
Oops and also my pain always starts with wicked sneezing and shocking runny nose, usually left side only but often both sides. The pain goes to left eye, left jaw, then left ear then left sinus then head and often ends with everything on both sides. As far as lying down goes that is impossible as one has trouble pacing and bashing the head if lying down [smiley=laugh.gif]
Cheers,
Kiwiiniz58

Title: Re: verapamil dosage
Post by LeLimey on Jun 11th, 2005, 5:01am
Well Jacqs if you really believe I'm the quiet one round here you've got less going on in your noggin than clusters thats for sure!! LOL
Can your neuro call your doc? How easy is it for you to change docs? one thing is certain and that is that you can't go on like this. Its unfair and in my opinion inhumane. (But then I'm a stroppy cow about people being left in pain when they shouldn't be!)
I don't know about where you are but in England Imigran injections (and ONLY the injections) are currently the ONLY licensed treatment for CH. It would be worth investigating that (your neuro would know) as if so I don't see how your heathcare ins can refuse to pay.. its not like for migraine where there are several licensed treatments and they could baulk at the cost in favour of a cheaper triptan. Mind you having said that alot of people here use Zomig nasal sprays which they say are just as fast acting as the imi BUT it has a much longer half life.. 26 hours so that might be a better option all round. Might just be worth your while investigating it!

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 11th, 2005, 6:47pm
Thanks for the input Helen, and no I didn't completely believe the description of yourself ;;D the Imigran tabs and nasal sprays here in Oz are on the health scheme but the injections were taken off a couple of years ago. Apparently some "wise" MAN in government thought it wasn't needed enough.
There are no neuros in this town and only 1 or 2 doctors so I've written to the GP I used to see in the city as he is most familiar with my probs.  Even though it is 800kms away we have to go there for most things anyway. Good news I haven't had pain for 2 whole days!! WOW it's fantastic!!
Ceers,
Jacqs

Title: Re: verapamil dosage
Post by PerryGR on Jun 12th, 2005, 2:39am
Hello Jacqs,

Welcome to the boards, sorry you're suffering though.

You mention that:

on 06/10/05 at 19:37:08, Kiwiinoz58 wrote:
it took 8 months of suffering from 10am till at least 6pm 5-6 days out of 7

Do you mean that the pain is constant from 10 am till 6 pm?

You also mention that:

Quote:
The pain goes to left eye, left jaw, then left ear then left sinus then head and often ends with everything on both sides.


I am not a doctor but both the duration of the attacks you describe(at least the duration i assume you mean) and the location of pain (being on both sides) aren't indicative of cluster headache. On the other hand the fact that you can't lie down during an attack is rather typical with cluster sufferers. I realise that seeing another neuro could be next to impossible in your situation but maybe you should seek a second opinion? I'm only suggesting this because most times relief can be achieved only through getting an accurate diagnosis.

Again, i'm sorry you've been in pain for so long, glad you've had some pf time- hope you'll continue being pf!

PFDAN to all,
Perry.

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 13th, 2005, 4:11am
Hi Perry,
Yes apparently the fact that I get such a lot of pain on both sides did make things difficult to diagnose but it always starts on the left side and stays there the bulk of the pain duration. One thing I hadn't been told is that the pain is several headaches and not one long one. Lately it has been much more noticable that the headaches are actually seperate as they have abated again somewhat in strength but the beginnings of each one has become more distinct. And yes I had them 5-6 days out of every 7 for at least 6 hours and often longer for 8 straight months. Another thing I don't believe now that oxygen was given a good enough or long enough try. They only put the mask on me for about 5 mins each time they tried it. I am in a difficult position where I live as there a no specialists of any sort so I would have to travel 780 kms to see one.

Title: Re: verapamil dosage
Post by PerryGR on Jun 13th, 2005, 9:13am
Hello Jacqs,

Thank you for taking the time to explain what you meant by what you said about the duration of your pain. Like i said, i do realise how difficult it is for you to see a different specialist- i have to travel myself to see my neuro. Maybe your best bet is to educate yourself on this affliction and try to pass some of this knowledge on to your GP- numerous people on this site have choosen that path.

I'm sure you've already discovered the wealth of info on this site as well as everyone's intention to help you find the best treatment for you.  

A very good place to start is this article that you've probably seen posted before by E-Double:
http://www.brightok.net/~mnjday/chtherapy.pdf  
it contains very thorough info on the current treatments for cluster headache.

You also mention that you use Mersyndlol Forte as an abortive. It is the general belief that OTC pain medications don't help much- actually it is thought they can cause rebound headaches.

Again, i'm sorry you're in pain and trully hope you'll be able to figure out the best treatment for you soon. Maybe you should start a new thread where you could ask any possible questions you have and get responses from more knowledgeable members.

PFDAN to all,
Perry.

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jun 13th, 2005, 8:40pm
Thanks for your concern Perry. I must admit to near total ignorance about CH and treatments but have learned a lot from here already. You are prob right about Mers Forte as I've noticed that although it may give me some relief I do nearly always get another headache. But what can I do as the only other thing that works at all so far is the imigran injections,  I simply can not afford them and have so far been given no other options. I am trying to get in touch with my last GP via e-mail so may ask him to explore some possibilities for me as he has been very obliging in the past. I have printed the "Update on Therapies" by Todd Rozen but will go to the site you mentioned and have a look.
Cheers,
Jacqs (Kiwi)

Title: Re: verapamil dosage
Post by Cynde on Jul 1st, 2005, 9:43am


on 06/10/05 at 19:37:08, Kiwiinoz58 wrote:
By the way I should mention that it took 8 months of suffering from 10am till at least 6pm 5-6 days out of 7, plus being sent to 4 different specialists before finally seeing a neuro and getting diagnosed. He actually put me in hospital for a week and tried all sorts of different meds including oxygen. Prior to that of course I believed I was getting paranoid and the only person in the world to have this problem.
Cheers,
Kiwi


Please, please, please make someone give you a CT scan or MRI/MRA.  I am not trying to frighten you, but my younger sister had headaches similar to yours.  The docs assumed that because she had been a long-time migraine sufferer (our mom, too, and I have CH), the headaches were just worsening migraines.  She was at the doc's every day for a week, and all they did was give her new meds.  Never once thought to do a scan.  Wrong move.  It was a massive aneurysm on her carotid artery deep in her brain that was leaking.  It ultimately ruptured, causing a massive stroke, spent 26 days in coma in ICU, and is now disabled (paralyzed on left side, tough for a sign-language specialist).  
I am not trying to scare you.  What happened to my sister, who was only 42 at the time, is extremely rare.  But if her shit doctor had ordered up a CT scan or an MRI/MRA at some point earlier, the aneurysm would have been treated before it exploded.  
So if you're travelling hundreds of miles to see a doc, make it worth your time.  INSIST that someone scan your brain.  I told my HMO that if they did not order a scan for me, I would go out of network and find someone who would, and I would pay for it.   (Aneurysms are more common amongst sister siblings, for some reason, than any other family relationship, and my sis and I are almost genetic twins, even though we're a year apart, so I knew I needed to have my brain checked, esp. since I suffer CH).

Best of luck.  Let us know what you learn.

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jul 1st, 2005, 7:34pm
Hi Cynde,

Thanks heaps for your concern.
When I went into hospital they did an MRI so I think everything in there is "normal". We travelled to Adelaide a couple of weeks ago and I went back with my neuro's letter to see my old GP and he gave me the extra Verap. It's hard to tell if it is helping yet as I'm still getting CH's most days but they seem to be changing somewhat. I'm going to a GP here but couldn't get to see one till the 11th July and will ask to get oxeygen to try. Noone else here has these I think as I  have to order Imigran in advance at the chemist, they don't keep it in stock and have it sent on the bus from Adelaide 800 kms away. Had a 10 CH yesterday and injected half a dose of Imigran and haven't had another CH since so 18 hours pf, here's hoping I get a day without!
Cheers,
Jacqs (Kiwi)

Title: Re: verapamil dosage
Post by Cynde on Jul 1st, 2005, 9:00pm

on 07/01/05 at 19:34:41, Kiwiinoz58 wrote:
Hi Cynde,

Thanks heaps for your concern.
When I went into hospital they did an MRI so I think everything in there is "normal". We travelled to Adelaide a couple of weeks ago and I went back with my neuro's letter to see my old GP and he gave me the extra Verap. It's hard to tell if it is helping yet as I'm still getting CH's most days but they seem to be changing somewhat. I'm going to a GP here but couldn't get to see one till the 11th July and will ask to get oxeygen to try. Noone else here has these I think as I  have to order Imigran in advance at the chemist, they don't keep it in stock and have it sent on the bus from Adelaide 800 kms away. Had a 10 CH yesterday and injected half a dose of Imigran and haven't had another CH since so 18 hours pf, here's hoping I get a day without!
Cheers,
Jacqs (Kiwi)


Glad they did the MRI -- it's such a cheap test nowadays, and if hundreds of them come out OK and just one finds a problem, I think they're worth it, esp. with my sister's experience.  Glad to hear, too, that you've got good meds.  I'm on week three of vera, which I now take at night thanks to some advice on this website, and have finished my prednisone.  I've had two PFDAN in a row, but I'm cautiously optimistic, having been in the ER just a week ago tonight with two of the worst I've ever had.  My doc gave me some sublingual Maxalt -- similar to Imitrex -- and it worked wonders for three CHs I had earlier in the week.  I am hoping to get through this holiday weekend PF...but I'm wary...
Glad you're doing better.  Do you all have mail-order medicine in Australia?  That way you don't have to travel so far to get your meds once you've got the prescription.  They're great here in the US, and they're often cheaper than buying over the pharmacy counter.  Just curious...
PS -- Are you a kiwi or an Aussie?  Or both?  Just curious.  You mention Adelaide, but then sign as kiwi.  To us northern hemisphere folks, that's confusing!
;-)

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jul 1st, 2005, 9:18pm
Aha so I fooled you  ;;D  I am A New Zealander but have lived in Oz for 22 years and am a citizen. We live in a very small country town in the far west of South Australia so everything is hard to get and has to come from Adelaide 800 kms away. My children live there so we go down fairly regularly and take long lists of what we need to bring home. As for the medication there is only 1 pharmacy here and he won't keep a stock of Imagran, he says it's too expensive for that (Aus $135 )He's an idiot! I'm looking at ordering it from the net as it is quite a bit cheaper, just need to get organised as it'll take about a week to arrive each time. My main problem is that I often put off using the Imigran because of the expense so suffer more than I need to as a result so I'm really wanting to give the oxygen a try. By the way and MRI here in Australia cost about $400 or so to have. Luckily for me I'm on a disability pension so most of it is covered by our health system, Medicare.
Here's hoping you stay pf for quite a bit longer.
cheers,
Jacqs :D

Title: Re: verapamil dosage
Post by Kirk on Jul 3rd, 2005, 1:51pm
For me 240 Mg of Verapamil SR twice a day seems to be the magic number.
I've noticed over the years that 480 Mg a day is on average the dosage where the relief kicks in. Some here take much higher dosages of verap.
It would be nice to see a poll on it. Now that we have over 8000 members, it would be fairly accurate.

TTFN

Title: Re: verapamil dosage
Post by Kiwiinoz58 on Jul 3rd, 2005, 6:36pm
One thing that concerns me is that the 2 months ( I originally said 3 mths by mistake) PF might have been a remission and not the Verap working. The reason I think that's a possibility is because I am still only having an average of 2 PF days a week. At the time I hadn't known about remissions so how are we able to tell the difference. A poll would be interesting indeed!
Cheers,
Jacqs



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