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CH,verapamil question from a newbee (Read 3711 times)

Headache Boy uk

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Matthew ch 11 v 28

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CH,verapamil question from a newbee
Nov 29^th, 2009 at 8:55pm

hi i'm very new to CH and i have been taking verapamil 40mg per day for the last month.

It has cut down the amount of full on attacks I have to less than one per day but I still get the horrible shadowy headaches.

But it is making me feel numb and dizzy and very jumpy
the only break I get from these side effects is when i use my imigran injections then i feel fairly normal for an hour or two

dose any one know if these are common side effects ? or is this not the verap but the CH instead

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Re: CH,verapamil question from a newbee
Reply #1 - Nov 29^th, 2009 at 9:15pm

40mg is an extremely low dosage. I can't imagine you'd feel much of anything in terms of side effects.

Effective dosage for cluster headache sufferers is usually between 360 and 720mg per day. I take 480mg per day, and I can tell you that I get light-headed from time to time, constipated most of the time, and tired all of the time. But any dosage less than this does not keep the monster at bay. In fact, I still am getting occasional breakthroughs - and the verapamil is combined with 900mg lithium per day.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Redd

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Re: CH,verapamil question from a newbee
Reply #2 - Nov 29^th, 2009 at 9:23pm

I'd ask if your Blood Pressure normally runs low to begin with.

While like Bill said, your dose is rather low, if you (like I do) have very low BP to begin with, even 40mg can have terrible effects. Even very low doses had me passing out because my BP would drop threw the floor.

It may also just be the way your body reacts to the Verapamil. Are you staying away from grapefruits and grapefruit juice?

"The goal of life living in agreement with Nature." ~Zeno

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: CH,verapamil question from a newbee Reply #3 - Nov 29^th, 2009 at 9:24pm I need 720 mg a day to put even a dent in frequency and intensity.
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jon019

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Re: CH,verapamil question from a newbee
Reply #4 - Nov 29^th, 2009 at 9:31pm

Hi,

For ME...480 mg of verap is a maintenance dosage. Currently in high cycle and using 960 mg/dy in divided doses. Side effects few after many years...occassional constipation (controlled with LOTS of water, 250 mg/dy magnesium and a high fiber diet)...lucky to say no other effects i can't live with...everyones different, but 40 mg is basically nothing...I'd at least try higher.

Should add...MANY meds...for MANY conditions...are poorly tolerated initially....working WITH your doctor, I would give higher doses a shot...

Best,

Jon

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Re: CH,verapamil question from a newbee
Reply #5 - Nov 29^th, 2009 at 9:35pm

Guys Guys....

His doc dropped him from 200 something mg down to 40 due to the same symptoms. (from another thread)

Seeing as I too had issues with the med, it's possible that his system simply cannot tolerate it.

Yes, I'd work with the doc, but ~~Johnny~~, Jon increasing a med that is causing bad side effects is not sound logic.

« Last Edit: Nov 29^th, 2009 at 9:35pm by Redd »

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Headache Boy uk

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Matthew ch 11 v 28

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Re: CH,verapamil question from a newbee
Reply #6 - Nov 29^th, 2009 at 9:39pm

wow that's some difference

My GP started me on 120 mg Sr but i started getting these side effects with in a couple of days . After a week i went back to see him and he checked my bp and said it was fine so he put me on the lowest dose he could but a week later the side effects were no better .

he now wants me to see a neurologist whom i was supposed to have seen 2 weeks ago but due to NHS mix ups I only saw a neuroscience doctor who booked me in for a MRI scan which is on Friday so hopefully i will see one after that.
any way my GP was talking about other preventers that he thought should be prescribed by a neurologist because of "nasty side effects" but to keep using the verap for now.

but at the moment my entire body feel numb like your hands do if you've been using an electric sander for too long, and light headed and dizzy and jumpy , my wife says it's a good job she doesn't get see sick sleeping next to me .
I guess the varap just doesn't agree with me Embarrassed

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Some people cause happyness wherever they go, others whenever they go

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Headache Boy uk

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Matthew ch 11 v 28

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Re: CH,verapamil question from a newbee
Reply #7 - Nov 29^th, 2009 at 9:47pm

oh by the way grape fruit is not a problem cos i can't stand the stuff

Thank you all very much for your feed back I've only been suffering CH for 3 months or so , so i have no idea what the hell is going on at the moment . seems i have a good GP though , from reading many other posts.
may peace be with you all .

You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: CH,verapamil question from a newbee Reply #8 - Nov 29^th, 2009 at 9:54pm Redd wrote on Nov 29^th, 2009 at 9:35pm: His doc dropped him from 200 something mg down to 40 due to the same symptoms. (from another thread) There was obviously no way for us to know that (unless we happened upon the thread you reference).
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burnt-toast

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Re: CH,verapamil question from a newbee
Reply #9 - Nov 29^th, 2009 at 10:18pm

As with virtually every drug we take – there are potential side effects that doctor and patient need to be aware of and consider. Dizziness is listed as a less serious side effect of Verapamil.

Verapamil is a common drug doctors turn to in attempting to treat this disorder. For whatever reason, it works in many cases, and the good needs to be weighed against the bad.

Studies suggest that Verapamil can cause heart problems in CH patients at the high dosages necessary to control the disorder. It is currently recommended that CH patients using Verapamil have frequent electrocardiograms to screen for irregular heartbeats.

Before taking any prescription medications please research their proper use and side effects. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

is a great source for complete prescription drug information.

Good Luck
burnt-toast
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jon019

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Re: CH,verapamil question from a newbee
Reply #10 - Nov 29^th, 2009 at 10:51pm

Redd wrote on Nov 29^th, 2009 at 9:35pm:

Yes, I'd work with the doc, but ~~Johnny~~, Jon increasing a med that is causing bad side effects is not sound logic.

Johnny?...my Nanno called me that...brought back great memories, thanks

Re your comment...YES, YES, YES....AGREE, AGREE, AGREE...which is why I said "ME"...we are all different in how we react to meds....I guess my point was that (with doc approval) ....don't give up too soon. It distresses me that initial side effects may cause some to abandon meds that mean "normal" life to many.

The human body is an AMAZING machine...it doesn't like being messed with...thing is, with ch, it's already messed with...ya gotta give it a chance to adapt to "another normal"....sorry if I can't explain this better. I hate this shite, for ANYONE...after 27 yrs, I know, from experience, that perseverance is absolutely necessary.....

I really try to be careful what I say....I share what works for me....I pray someone may find a sliver of relief in my experience....I fervently wish that some day this will be a social forum and not a ch forum (cuz it won't be necessary)...and I'll still be here.

I DO appreciate your comments Redd...it's a fine line we walk here...balancing on the edge is my goal.

Best,

Jonny

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Re: CH,verapamil question from a newbee
Reply #11 - Nov 30^th, 2009 at 6:44am

Headache Boy uk wrote on Nov 29^th, 2009 at 8:55pm:

hi i'm very new to CH and i have been taking verapamil 40mg per day for the last month.

It has cut down the amount of full on attacks I have to less than one per day but I still get the horrible shadowy headaches.

But it is making me feel numb and dizzy and very jumpy
the only break I get from these side effects is when i use my imigran injections then i feel fairly normal for an hour or two

dose any one know if these are common side effects ? or is this not the verap but the CH instead

Not common, but puzzling. Haven't seen one pipe up about these symptoms being CH related.

Headache Boy uk wrote on Nov 29^th, 2009 at 9:39pm:

My GP started me on 120 mg Sr but i started getting these side effects with in a couple of days . After a week i went back to see him and he checked my bp and said it was fine so he put me on the lowest dose he could but a week later the side effects were no better .

The appearance of the symptoms days after verap at 120mg, your bp was fine though, but then at 40mg, same side effects and it's preventing. Puzzles me.

Quote:

... i have been taking verapamil 40mg per day for the last month. It has cut down the amount of full on attacks I have to less than one per day but I still get the horrible shadowy headaches.

To me, this is a normal indication of a request to slightly up the verap, as some above may have thought also. Since you have these symptoms though, one thought is to request going off it completely and see what happens. Meanwhile, oxygen a good request if needed.

Jon mentions intial reactions to meds, and I've found that pointful at times, but if that pertained this would have subsided by now.

Quote:

... saw a neuroscience doctor who booked me in for a MRI scan which is on Friday

Check bp again, I've no clue to these circumstances.

« Last Edit: Nov 30^th, 2009 at 6:48am by Kevin_M »

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: CH,verapamil question from a newbee Reply #12 - Nov 30^th, 2009 at 9:48am I had such a terrible time with Verapamil. Anyone ever had the side effect of their heart fluttering??
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: CH,verapamil question from a newbee Reply #13 - Nov 30^th, 2009 at 10:00am Kimmie wrote on Nov 30^th, 2009 at 9:48am: I had such a terrible time with Verapamil. Anyone ever had the side effect of their heart fluttering?? Yes. That's usually a sign that you're taking too much of it.
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Headache Boy uk

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Matthew ch 11 v 28

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Re: CH,verapamil question from a newbee
Reply #14 - Dec 5^th, 2009 at 8:12pm

Hello sorry I've been so long getting back , it's been a very hectic week and I seem to be permanently tired at the moment. I'm finding work tough because of the side effects of the verap , just simple things like ballance are proving a challenge at the moment.

Thanks every one for your feed back , I think it is now obvious to me that verap and I don't get on .
I'm having shadows so often that they are almost all blending in to one ( Kip 3-5 ) and a full on attack most days.
starting to get me down a bit.

Any how had MRI yesterday , that was a bit weird , made me feel really dizzy and disorientated for about half an hour , I couldn't even talk strait , I'm very grateful that a friend of mine drove my wife and I up there , 50 ish miles up the A12 to Romford on a Friday evening is no fun at the best of times (about 1 3/4 hours on a good day in UK traffic) .
They said that I'd get the results back in two weeks and I am waiting for another appointment to see a neurologist to come through . I think if that's going to be months away I'll go and see my GP about coming off the verap and getting some O2 or something instead .
any way thank again .
Nigel

« Last Edit: Dec 5^th, 2009 at 8:14pm by Headache Boy uk »

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Some people cause happyness wherever they go, others whenever they go

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Marc

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Re: CH,verapamil question from a newbee
Reply #15 - Dec 5^th, 2009 at 9:19pm

Headache Boy uk wrote on Dec 5^th, 2009 at 8:12pm:

..........................
Any how had MRI yesterday , that was a bit weird , made me feel really dizzy and disorientated for about half an hour , I couldn't even talk strait , I'm very grateful that a friend of mine drove my wife and I up there ...................
Nigel

Now that's one I have never heard.

Waiting for several months to see a Neurologist is not a good idea.........See if you speed that up somehow.

Marc

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Headache Boy uk

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Matthew ch 11 v 28

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Re: CH,verapamil question from a newbee
Reply #16 - Dec 5^th, 2009 at 9:51pm

Hi marc
the letter i got from the MRI teem did state that it can make you dizzy etc and being as I'm feeling that way on the verap any way i guess i was probably susceptible to it any way.
As for the neurologist , they sent me a letter inviting me to make an appointment , saying ring this number to book your appointment, so I gave them a call and they said that they can't give me a date over the phone , they have to send it by post, so I'm still waiting for that. usual nhs way of doing things but i bet it comes thrue for February.

The NHS are good for some things though like they have deemed it unethical not to prescribe imigran because of the cost due to the severity of the pain suffered , so in the UK you can get several shots of imigran for one prescription charge of £7.20 ! so i count my self very lucky when i read about you guys struggling to afford the stuff in the US.

Piece and pf to you Nigel

« Last Edit: Dec 5^th, 2009 at 9:53pm by Headache Boy uk »

You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go

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Headache Boy uk

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Matthew ch 11 v 28

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Re: CH,verapamil question from a newbee
Reply #17 - Dec 8^th, 2009 at 9:41pm

further to my previous ramblings and comments on the effectiveness of such a low dose of verap , I think what effect it was having is now going I'm getting several attacks a day now , most of them i can just about put up with but i am still using one imigran jab a day ( trying not to use more than i have to )
also I've started getting a strang er.. tappy feeling in my chest every now and then , don't know how else to describe it , could that be hart flutters ?

still not got my neuro appointment through yet.
I hate all the waiting around for these things.

oh , I tried a can of red bull to day , tastes awful but I did manage to get it down fairly fast , it didn't do any good though. but I guess it was worth a try. sorry if you've already read that bit on the other post i did earlier.

Nigel

You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go

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DennisM1045

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Re: CH,verapamil question from a newbee
Reply #18 - Dec 15^th, 2009 at 12:12pm

Verapamil + heart flutter + energy drinks = very dangerous situation!!!

Verapamil and the Taurine in energy drinks are both calcium channel blockers. If you block too many calcium channels you can affect heart rythm in a very negative way.

Add to that a powerful vasoconstrictor like Imigran and you could very well be in some trouble here.

Get the to a Dr ASAP and get an EKG!!!

Good luck...

-Dennis-

« Last Edit: Dec 15^th, 2009 at 12:13pm by DennisM1045 »

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: CH,verapamil question from a newbee Reply #19 - Dec 15^th, 2009 at 8:45pm Thanks Dennis Ill go see my gp asap . BTW got a neuro appointment through at last for the 20th January. Nigel
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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: CH,verapamil question from a newbee Reply #20 - Dec 21^st, 2009 at 9:06pm I think I'm coming out of my cycle now, had only a few very mild shadows in the last week and a half. I think I'll stop taking the verap at the week end , if I've had no more attacks by then. Nigel
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LeLimey

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Re: CH,verapamil question from a newbee
Reply #21 - Dec 22^nd, 2009 at 9:12am

Hi Nigel - with reference to your prescription costs, given that you could be trying a few different drugs now it may be worth your while looking into a pre payment certificate. You pay a one off fee for either a 3 or 12 month certificate. If you get more than four prescriptions in 3 months or 14 in 12 months you will instantly save money.

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Hope it helps
Helen

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Headache Boy uk

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Matthew ch 11 v 28

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Re: CH,verapamil question from a newbee
Reply #22 - Dec 22^nd, 2009 at 7:58pm

Thanks Helen
My wife got me a 3 month pre-payment certificate last month, I think it already payed for it's self twice over , well worth it.

I'v been shadowy all day today and my right eye has been watering for the last 3 hours but no attack yet . Not shore about stopping the verap now.

any how , how are you , hows New York , I see that it's cold there.

Hope your having a good time .

Nigel

You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go

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