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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> What's the real score with Verapamil side-effects?
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Message started by hurts_so_good on Aug 6th, 2008 at 6:08pm

Title: What's the real score with Verapamil side-effects?
Post by hurts_so_good on Aug 6th, 2008 at 6:08pm
Hi guys,

Started Verapamil a couple of months ago and have been virtually PF so far, although I had several KIP 3's at the weekend - possibly because I'd not taken the Verapamil for a few days as I'd stupidly allowed myself to run out.

Of course, I can't say for sure that the Verapamil has kept the CH at bay because I'm not certain I was "due" some headaches. I hope that it's helping.

But I want to ask about lesser-known Verapamil side-effects. The leaflet describes quite a few, none of which apply to me.

However, since I started using Verapamil I have felt different in other ways. Has anyone else encountered the following?

1. Permanently tired
2. Depressed
3. Shaky and nervous
4. Totally lacking in motivation
5. Could spend all day in bed

I've always been bright and outgoing in character and people even asked me "Ian, why do you never get depressed?" but lately I've become really uptight and defensive.

Is it possible that Verapamil has brought about these feelings/moods? I know for sure that I experience all of them when I'm on cycle - as anyone would - but I've always been quite upbeat when off cycle.

I'll be seeing my neuro in a couple of weeks time and I'd really love to hear from anyone who has had the same experience as me before I talk with him as he'll obviously be reviewing my medication.

I'm not blaming Verapamil as I haven't conducted a scientific study but I do wonder if it has contributed to the feelings listed above.

But for sure I don't remember ever feeling so shaky before.

Looking forward to hearing from you.

Ian

Title: Re: What's the real score with Verapamil side-effects?
Post by jon019 on Aug 6th, 2008 at 8:14pm
Hi Ian,

Certainly share your symptoms with your doc. It's VERY important.

My experiences:

I'm chronic, with cycles within cycle. Don't know your situation. If I deviate from a consistent 480 mg/dy in low cycle I get all kinds of side effects. Main ones are: periodic dizzyness and general fatigue. My advice, stay consistent.

Always have a battle with depression. Suspect verapamil contributes but then, CH and my own nature are probably the main causes.

In high cycle I go up to 960 mg/dy. Main additional side effect is leg cramps (at night in bed) and LOW BP (90/50). Have to be real careful and usually back off. Also feel generally lousy at these doses: lethargic, moody, sleepy, stay-in-bed-feeling. STILL beats being continually slammed by CH.

I'm willing to live with all the above in trade for less or lower kip hits. YMMV.

Best,

(Hope you find a neuro with an open mind and a willingness to work with you.)

Jon





Title: Re: What's the real score with Verapamil side-effects?
Post by hurts_so_good on Aug 6th, 2008 at 8:47pm
Thanks Jon,

You mentioned the leg cramps, something I hadn't mentioned in my post.

I get that too, but hadn't even thought it might be a by-product of Verapamil.

I'm only on a 240mg daily dose but I'm experiencing feelings I've never experienced before.

I'm not blaming Verapamil, but just want to explore what other Verapamilers have found.

And I will mention it to my neuro. He seems to have a very open-mind, unlike my GP, who rubbished my suggestion of O2.

I'm gonna make sure he writes my GP telling him that I must have 02 if the need arises.

Best PF wishes,

Ian

PS You're right about the trade-in. I'd rather be miserable and lying in bed than trying to stuff ice cubes up my nose while rocking back and forward with a packet of frozen peas clamped to my head.

Title: Re: What's the real score with Verapamil side-effects?
Post by mezza on Aug 6th, 2008 at 10:58pm
Ian-

Verap was a life saver in my last cycle.  Stopped my hits completely.  But it definitely was not without side effects.  Here were mine:


poor memory
terrible time forming words
foot cramps ( mini charley horses)
shaky hands
exhausted
mood swings

no constipation etc though


I was on 660 mg.  The side effects sucked but the pain free time was worth it.   Memory is back and I can actually complete sentences- so in my book no harm no foul

Kelly

Title: Re: What's the real score with Verapamil side-effects?
Post by maalstroom on Aug 7th, 2008 at 2:08am
Hi there,

The only real side-effects I had with the Verap, were fatigue and a sensation of weakened muscles. Nothing big, but it bugged me nonetheless. Did feel as if I had tired legs all day long.

Pascal.

Title: Re: What's the real score with Verapamil side-effects?
Post by Ungweliante on Aug 7th, 2008 at 3:58am
Hey Ian,

I'm chronic, with around 2-6 daily hits. I managed to build Verapamil to a dose of 480mg per day, at which I got:

- Brachycardia - pulse as low as 40.
- Constant fatigue
- Tired legs, e.g. was difficult to climb the stairs
- Running out of breath
- Constant dizziness
- Extreme constipation, nothing came out without large doses of lactulose

At that dose the hits were reduced by around 15min, from 60min to 45min. I personally found the side effects outweighed the benefits.

- Wishing you pain free time,
Rosa

Title: Re: What's the real score with Verapamil side-effects?
Post by Ernie Moss aka Wishbone on Aug 7th, 2008 at 4:30pm
Ungweliante, interesting you mentioned brachycardia.  I have always had a low heart rate and had White Parkinson Syndrone and had to have a heart ablation some 15 or so years ago, but to be diagnosed I had to have an attact of tachacardia and get to the hospital of an ekg.  They gave me meds to convert, but while in the hospital my heart rate dropped to in the teens.  The darn nurses kept waking me up all night wanting to know if I was okay, of course to me I was fine except for them disdurbing my sleep.  All of that I hope is corrected now (at least the irregular part), but I normal heart rate is probably around 64-68.  I am guessing when I sleep it drops to 40.  I too am on 480mg of Verapmil and cannot say that I have experienced any of the side affects mentioned in any of the posts, but I was curious if my (and maybe others with low heart rates) low heart rate could be a trigger for night time hits, because I would be getting so little O2 on my own.  I have noticed when in cycle that almost without fail if I fall asleep on the couch watching TV I will get hit, not usually a zinger, but a hit none the less.  Just a thought.  Wishbone.

Title: Re: What's the real score with Verapamil side-effects?
Post by Ungweliante on Aug 8th, 2008 at 4:09am
Ernie,

I don't think a low pulse by itself automatically reduces the O2-saturation of the blood. Rather, there are numerous factors at play - the volume of blood pumped by the heart per one heartbeat, the amount of hemoglobin in your blood and the amount of red blood cells in the blood. Also considering CH, the amount of CO2 in the blood also has to be taken into account - CO2 is a vasodilator and O2 is a vasoconstrictor.

This is probably something Batch, the High-Guru of Oxygen, would know plenty about.

- Rosa

Title: Re: What's the real score with Verapamil side-effects?
Post by sandt38 on Aug 8th, 2008 at 8:10am
Ian,

I too stay tired on Verap. I have a general feeling of being unwell, and people around me have said they can see a change in my demeanor. I am pretty much a clown, "the life of the party" if you will, but when I take the Verap I just get... bleh, I guess is the best way to put it. In short, I also have all of your side effects too, except the depression, and I get constipated too  >:(

Title: Re: What's the real score with Verapamil side-effects?
Post by chewbaccamonkey on Aug 8th, 2008 at 4:38pm

mezza wrote on Aug 6th, 2008 at 10:58pm:
terrible time forming words


I know what you mean, the first time I went up on the dosage I couldn't seem to get some words to come out of my mouth. Then I was doing some paperwork...trying to count...had a really difficult time. Haven't been up to that dosage since then!

Title: Re: What's the real score with Verapamil side-effects?
Post by jon019 on Aug 8th, 2008 at 9:51pm

chewbaccamonkeylunch wrote on Aug 8th, 2008 at 4:38pm:

mezza wrote on Aug 6th, 2008 at 10:58pm:
terrible time forming words


I know what you mean, the first time I went up on the dosage I couldn't seem to get some words to come out of my mouth. Then I was doing some paperwork...trying to count...had a really difficult time. Haven't been up to that dosage since then!


Dang, I hate when that happens! For me Topomax did that, verapamil, no...

Best,

Jon

Title: Re: What's the real score with Verapamil side-effects?
Post by Pixie-elf on Aug 9th, 2008 at 12:58am
Well, for me before it did the whole anaphylaxis/throat closing up thing on me, it made me horribly moody.

Title: Re: What's the real score with Verapamil side-effects?
Post by MJ on Aug 9th, 2008 at 1:53am
"Calcium channel blocker overdose is rapidly emerging as the most lethal prescription drug ingestion."

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.


Many have good results with Verapamil and the like. The link is something all should be aware of.

Title: Re: What's the real score with Verapamil side-effects?
Post by hurts_so_good on Aug 10th, 2008 at 9:45pm
Guys,

Thanks for all your replies. I'm beginning to think I'm not on my own in my response to Verapamil.

And I must add that we're probably only a small number out of thousands who have benefited from Verapamil without such side-effects.

We probably are a minority within the CH minority.

I don't suffer from any of those side-effects listed in the Verapamil leaflet but I have definitely felt different since I started taking it.

Honestly, I'm so tense and uptight that right now I couldn't go through a big-stress situation (like a job interview). I've never felt this way before, because I'm normally laid-back and easy-going.

That said, I'd prefer to be this way than doing the head-in-the-fridge stuff with a KIP 8+  :'(

I see my neuro next month (unfortunately after I come back from my holiday in Poland) and I'll have a lot to tell him. He is pretty forward-thinking and will be interested in my reaction to Verapamil.

Thanks again for all the feedback.

Kocham ty (Forgive me, that's me showing off my new-found Polish. It means "Love you".)

And I do love my big new headache-sharing family. [smiley=dankk2.gif]


Ian

Title: Re: What's the real score with Verapamil side-effects?
Post by Summermood on Aug 15th, 2008 at 10:44pm
Hi! I am new and I am on my way on taking Verapamil! I have been taking vicoden, Maxalt & Meprozine. I am scared to take Verapamil
because I hear about it can Lower your blood Pressure and can do some damage if your BP gets to Low! Even though I don't want to live with CH anymore and they are so darn painfull I have to try it? I dont understand how the heck some people can live with CH I have had bad doctors after bad doctors today I went and he is giving me imitrex but I have a stress test this coming week If everthing is ok he will give me where I can give myself shots of imitrex! I am so tired of doctors thinking people are drug seeking! Myself I would rather be knocked out for the day the next day I am fine for a week and wham again another CH. I went to a local Hospital tearing from my eye same side all ways eyelid small u can look at me and see I am having a CH If u know what I mean the doctor says to me what can I do for u! What????? U are a doctor get me out of my pain I told her I felt like getting a gun and shooting my head off! Yes thats how bad the eye pain is its h@ll! I dont understand a lot I think I have Migraines and sometimes have CH at the same time! CRY yes I cry all the time!
Am I depressed heck no I am in pain!!! My family does'nt understand How can they they don't no how it feels! I'm aspose to be HAPPY well guess what I'm not I want answers and I need a lot of answers! I live in SC the neurologist in COLUMBIA suck! If there was someone that just did ch I would be gone tomorrow I need someone who understands who nos how I feel who wont look at me like a drug seeker! I have had migraines since I was 18 or so Ive tried alot of things nothing really helped but I could bare it! NOW CH put me out I would rather be out for the day yes the whole day! Things I think have to do with mine Weather I can tell u if its gonna rainCH! Hair color CH Mold CH Why? Why Me? I Had one doctor tell me there is no cure they dont no what causes CH what? Doctors dont like to prescribe narcotics because they are addicting well I would rather be knocked out then for something go wrong with my heart from taking Verapamil can someone please shed some light on this? I dont have Highblood pressure? Topamax made me feel weak like i had the flu no energy at all still had CH 2nd attempt with topamax now Verapamil  :'(

Title: Re: What's the real score with Verapamil side-effects?
Post by angela.lambert on Aug 15th, 2008 at 11:03pm

1. Permanently tired
2. Depressed
3. Shaky and nervous
4. Totally lacking in motivation
5. Could spend all day in bed

That is the "ME"!  :D  I can barely have a conversation with my husband.  "Shaky and Nervous" are the only ones that don't totally fit.  I also don't have coping skills anymore.  I can't deal with the most easily fixable situations.  I absolutely understand.

Have you found anything to help, besides stopping verapamil?

angela

Title: Re: What's the real score with Verapamil side-effects?
Post by Summermood on Aug 15th, 2008 at 11:11pm
I haven't started it yet! I'm scared to Heart Problems run in my family so Im confused If I should or shouldnt? I got it filled but I read the warnings on the leaflet it came with :-/ and My mom took that diet drug and it messed her up so I read things and im scared of side effects but when I have a CH I would rather be dead anyway so I'm just confused I dont want to have ch anymore but then I dont want to have heart problems either! :'(

Title: Re: What's the real score with Verapamil side-effects?
Post by Summermood on Aug 15th, 2008 at 11:14pm
I haven't started it yet! I'm scared to Heart Problems run in my family so Im confused If I should or shouldnt? I got it filled but I read the warnings on the leaflet it came with :-/ and My mom took that diet drug and it messed her up so I read things and im scared of side effects but when I have a CH I would rather be dead anyway so I'm just confused I dont want to have ch anymore but then I dont want to have heart problems either! :'(

Title: Re: What's the real score with Verapamil side-effects?
Post by MJ on Aug 18th, 2008 at 2:20am
Summermood

If you have found a doctor you feel good about you sometimes have to lay your trust in him/her.
If Doc is aware of your questions and issues, listens and takes all these things into effect and says its safe, its worth a try. An awfull lot of clusterheads have found relief with verapamil. Those Docs that throw drugs at us without understanding cause and effect of those drugs are the ones to worry about.
Still the best care for CH is a shared knowledge between you and doc. Those that find the best relief spend the time understanding their condition often better than the docs, its a mutual aide thing.
When a doc says he doesnt know the cause of CH he's being honest with you as none know that answer yet.

Title: Re: What's the real score with Verapamil side-effects?
Post by tony-PA on Aug 18th, 2008 at 5:45pm

angela.lambert wrote on Aug 15th, 2008 at 11:03pm:
1. Permanently tired
2. Depressed
3. Shaky and nervous
4. Totally lacking in motivation
5. Could spend all day in bed


That's me !!
It's almost 3 years i MUST have my 240mg pd verapamil.
I got no other choise ........   :(
Many times I have tried to lower and eventually to stop assuming it, but at 120mg the shadows start (couple of times i've had single attack also).

Title: Re: What's the real score with Verapamil side-effects?
Post by superhawk2300 on Aug 18th, 2008 at 10:45pm
Well, your list fits me pretty well too.

I try like hell to not do any verapamil if I can get away with it....

Title: Re: What's the real score with Verapamil side-effects?
Post by BC_Battler on Aug 20th, 2008 at 1:05pm
Thanks for bringing this up!

For the last few months I have been unbelievably tired. I mean, ultra-fatigue. I hate it, as it definitely isn't me, and I am sure it's the meds.

I currently take:
Verapamil 720 mgs
Sansert (methysergide) 12 mgs

The fatigue has led to weight gain (which, I have read is also a side effect of Sansert), which is depressing enough all on its own, but I am fighting like hell to stay upbeat and energized. I have been working with a personal trainer for the last year and I work out a few times a week, at least. Despite this, I am always tired, gaining weight, and generally miserable.

I am a very positive, upbeat person, but in the last year I have had more "down" days than I have ever experienced in my life. I am not depressed, I don't think, I'm just not my usual upbeat self.

A few weeks ago I had had enough, so I gradually backed off my meds. I was down to about a third of my normal dosage, was feeling great (happy! energetic!), when I got the absolute heck beat out of me yesterday. I fought kip 9s, with shadows in between, and today I feel absolutely beat up.

I know these meds are having a negative effect on my energy levels and attitudes - I just don't know how to manage a PF life without them. I am thankful for what Verapamil and Sansert have done for me in relation to the headaches, but as for the rest of my life, I'm not so sure.

Cheers -

Title: Re: What's the real score with Verapamil side-effects?
Post by hurts_so_good on Aug 20th, 2008 at 5:57pm

Quote:
My family does'nt understand How can they they don't no how it feels!


With you on that one Summermood. Some of my family do understand but others seem to think it's just some sort of play-acting. And if that's the reaction you get from your family, you just know how it's gonna go down with others.

No wonder so many CHers suffer in silence. Though it's kinda hard to hide when you're on cycle.  >:(

You just know they're thinking you can't possibly have that many headaches. Anyway, Summermood, hope you're on your way to getting good help and support from the site regulars.

Now, back to the thread I started. I think it's coming through loud and clear that more of us than I thought are encountering at least some of the effects I listed in the initial post. As BC_Battler says:


Quote:
I know these meds are having a negative effect on my energy levels and attitudes - I just don't know how to manage a PF life without them.


Well-put!  :)

Tony and Angela seem to be in the same boat, among others.

At the moment, and me CH-free (touch wood!), the side-effects I mentioned are a big issue in themselves - yet I know that a cluster cycle will make them irrelevant for as long as it lasts.

I'm glad I started this thread, as it's giving us a new insight into the possibly unexplored side-effects of some standard CH treatments.

Ian

Title: Re: What's the real score with Verapamil side-effects?
Post by Lizzie2 on Aug 20th, 2008 at 6:22pm
I've known the fatigue was a side effect of verapamil, but I figured my lack of motivation/low mood/low energy was more the effect from depression rather than med-caused.  I'd be happy as a lark to learn that once I get off the verap, all that will go away!  I used to be a very happy and upbeat, full of energy person until I started having headache problems years ago.  I know I also have some underlying depression and certainly anxiety, but I've been on meds so long that I don't know if it's the meds or me, I guess.

I do know verapamil is used as an adjunct drug for mood disorders and anxiety, so I wouldn't think anxiety would really be a side effect of verap.

That being said, if your dose is at a point where it is bottoming out your blood pressure/dropping your heart rate, that can certainly cause shakiness, sweating, dizziness, chest pains, and so on.  I know when I was on 960mg of verap a day, that happened to me, and at that point, I thought I was going to die. I couldn't even get off the floor.  I crawled from my bedroom to the bathroom, puking my brains out, and just laid there until my roommate at the time took me to the ER.  Of course, by the time I got to the ER and was seen, some of the worst of the effects were wearing off, and my blood pressure had started to come up a bit.  They just checked an EKG and had me wait out the side effects until the half-life had passed.

But when my BP used to drop on those upper doses, I would get very, very shaky.

Now fatigue and swollen feet are my big verap side effects.  Never used to get the swollen feet, but I do now.  Also, I get bad leg cramps, but only if I've been on my feet all day for work, too.  My boyfriend walked in one night, and I stretched - waking up on the couch as he opened the door - and BAM.....cramp in my right calf.  Hurt so bad I couldn't talk.  But at least went away after a few minutes!

It's helped, but I'm anxious to be off it.  Interesting to read that so many of you find the lack of motivation/low mood may be from the verap.  That gives me a bit of hope.  I just thought it was from me or depression.  I guess time will tell once I'm off it!

PF wishes,
Carrie :)

Title: Re: What's the real score with Verapamil side-effects?
Post by mezza on Aug 21st, 2008 at 1:13am
I have had an underlying mood disorder-- episodic low level depression and anxiety- usually controlled by meds-- since my late teens early twenties (probably earlier actually ::)  )  Sometimes when I am in cycle it can be difficult to tell whether its that or my meds.

But boy, I know that last cycle  the Verapamil greatly effected my mood.  It was constant low- And one thing leads to another.  You're exhausted so you sleep alot, therefore miss out on human connections which tends to isolate you - You have no energy either - makes quality time more difficult.  All these elements affect my mood too.

Still - have a refill waiting for me on my shelf-  I will do all over again unless I CB which I am seriously thinking more and more about-  Now if my memory would ever return to full power , maybe I could actually remember to order the seeds to increase my options.  

Whatever gets ya painfree , I'm in -!

Kelly

Title: Re: What's the real score with Verapamil side-effects?
Post by superhawk2300 on Aug 21st, 2008 at 8:17am
Yeah the exhaustion can be so terrible. Just completly drained of energy. I have dubbed Verapamil - "Vampireamil".

Title: Re: What's the real score with Verapamil side-effects?
Post by Paige_H. on Aug 26th, 2008 at 12:18pm
I hate verap.  It only does bad things for me.  Of course people will be pissy because I said that.  But everyone is different & what helps one, may destroy the other.  But my side effects were so severe & it wasn't helping with my cycles at all.  But because docs kept insisting I try it, it was so great, blah blah blah - I kept trying.  Then the last go around was ocular migraines every other day (sometimes more often), constantly dizzy, my ears felt stopped up, I had legs cramps, I was tired - yet couldn't rest.  And worst of all, it gave me headaches!  So, it helps some people, it doesn't help others.  Just be careful.  I know I won't ever touch it again.  

Title: Re: What's the real score with Verapamil side-effects?
Post by Brew on Aug 26th, 2008 at 1:46pm

Paige_H. wrote on Aug 26th, 2008 at 12:18pm:
I hate verap.  It only does bad things for me.  Of course people will be pissy because I said that.  But everyone is different & what helps one, may destroy the other.  But my side effects were so severe & it wasn't helping with my cycles at all.  But because docs kept insisting I try it, it was so great, blah blah blah - I kept trying.  Then the last go around was ocular migraines every other day (sometimes more often), constantly dizzy, my ears felt stopped up, I had legs cramps, I was tired - yet couldn't rest.  And worst of all, it gave me headaches!  So, it helps some people, it doesn't help others.  Just be careful.  I know I won't ever touch it again.  

As long as you refer to it from the first person perspective as you've done here, I don't think anyone will have a problem. It's when you start vilifying it objectively that newbies can get the wrong impression.

It has undoubtedly saved the life of at least a couple of my friends. You can understand why I might be a little sensitive.

Title: Re: What's the real score with Verapamil side-effects?
Post by Paige_H. on Aug 26th, 2008 at 2:32pm
Brew, I know where you are coming from, but it almost killed me and I think people really, really need to know what the effects can be from calcium or beta blockers.  I almost had to go on disability because of it and I was only taking 180mg a day.  I also believe no one should feel scolded for having an opinion regarding a medication or treatment.  Everyone reacts differently to everthing.

Title: Re: What's the real score with Verapamil side-effects?
Post by Brew on Aug 26th, 2008 at 2:45pm

Paige_H. wrote on Aug 26th, 2008 at 2:32pm:
Brew, I know where you are coming from, but it almost killed me and I think people really, really need to know what the effects can be from calcium or beta blockers.  I almost had to go on disability because of it and I was only taking 180mg a day.  I also believe no one should feel scolded for having an opinion regarding a medication or treatment.  Everyone reacts differently to everthing.

But only a very small minority of patients react the way you did. Because you reacted that way to a calcium channel blocker doesn't mean everybody will, let alone a statistically significant portion.

Nobody should feel scolded for an opinion about a med. I stated very emphatically that as long as one gives the account in the first person (it did this for me, I reacted thusly, etc.), most people don't have a problem with it.

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