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Verapamil side effects/feeling whilst using it (Read 4670 times)
jish
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Verapamil side effects/feeling whilst using it
Mar 18th, 2014 at 5:27pm
 
Hey, after reading pretty much all the posts regarding people's experiences with Verapamil, i didn't find much reference to the various side effects people experience whilst taking it for long periods of time, apart from the incredibly common ones like constipation, fatigue and tiredness.

I was wondering if anyone else experiences Verapamil side effects like -
-a feeling of pressure in their ears that comes in waves, can be worse some days and better others
-general tightness/tension in their head but whilst remaining largely pain free


After consulting my Dr - I'm beginning a 6 week taper down of Verapamil from 240mg per day, dropping off one 40 mg pil per week as i can no longer tell what i'm feeling is just side effects from Verapamil or whether i'm still actually in a CH cycle that is being masked by Verapamil.


My cycle began slowly in mid October last year and I've been pain free since December after i guess the Verapamil started to take effect and haven't needed to use Sumatriptan since then either.

Since i've been on Verapamil and pain free, my only complaints aside from the lack of energy, tiredness and constipation have been pressure in my ears on the Cluster Side that comes and go's, head tension and just a general discomfort feeling that hasn't changed in nearly 3 months.

This is the first cycle i've had diagnosed as Cluster Headaches, the worst pain wise (when i was feeling the attacks before verapamil anyway), the longest and the first i've taken CH related medication for.

Before this cycle i'd had one episode of them 3 years ago that lasted 2-3 weeks and was ridden out with a lot of Ibruprofen and one i can kinda remember 11 or so years ago that the Dr thought was sinus headaches. So i'm episodic or at least think i still am.

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« Last Edit: Mar 18th, 2014 at 5:30pm by jish »  
 
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BobG
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Re: Verapamil side effects/feeling whilst using it
Reply #1 - Mar 19th, 2014 at 5:00am
 
For me Verapamil has never caused the ear pressure or tension you get. But we are all different.
I've been on verapamil for 3 years now. I do get the constipation from time to time. It is not constant. At the other side I'm usually thirsty and drink water all day. That makes me have to pee alot.
About being episodic or chronic.......you are episodic. The term chronic clusters refers to a length of time, not the amount of pain or the length of each attack. Chronic is having attacks for one year without at least a one month break.
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Bob Johnson
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Re: Verapamil side effects/feeling whilst using it
Reply #2 - Mar 19th, 2014 at 7:12am
 
Constipation is easily controlled and it's a minor issue compared to its benefit in blocking Cluster attacks.

Tiredness? May be a result of your blood pressure being depressed; something your doctor can decide.

It has always surprised me how rare a significant drop in BP is reported, especially when considering the massive doses we use as compared to when it's used for it's primary application for heaert/BP issues.
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jish
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Re: Verapamil side effects/feeling whilst using it
Reply #3 - Mar 19th, 2014 at 9:08am
 
I had low blood pressure anyway before starting Verapamil - i can't really take more than 240mg a day without getting heart palpitations and feeling light headed. I have to take it in 3 doses of 80mg as i also get the sensations mentioned above when i take it in 2 doses of 120mg.

It's alright as that dose does me fine to shield me from the Cluster Headaches but i think i have to put up with a not quite clear head, blocked ears and nose on cluster side, (the nose thing -especially when i wake up) mild tension and a feeling of pressure that goes up down on that side.

Do you think it sounds like my cycle is probably still going and a taper could find me back to square one?

I think i'm gonna book an appointment to see my neurologist and see if i can get some oxygen and perhaps try and ride this cycle out using a combination of that, energy drinks and in an emergency subcutaneous Sumatriptan if i get hit with a howler.
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Bob Johnson
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Re: Verapamil side effects/feeling whilst using it
Reply #4 - Mar 19th, 2014 at 1:08pm
 
Print the PDF file, below, and use it to discuss options with the doc.

I would not stop taking it, if you have the option, until the present cycle is clearly over. Stopping before can lead to the attacks continuing.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

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Re: Verapamil side effects/feeling whilst using it
Reply #5 - Mar 19th, 2014 at 4:49pm
 
I started taking Verapamil for clusters about 2 months ago and have similar issues (I recently posted here about ringing in the ears) and now that I think about it this ringing didn't start until I began the treatment. I too have a constant pressure in my head (like a sinus cold) with clogged ears and that all familiar trigeminal nerve pain up my nose/sinus cavity.
I tend to agree that yes, we're still in cycle and the Verapamil is 'masking' the headache and not allowing the beast to come out and play.
I'm seeing my neurologist next week and I'll ask her what she thinks.
I'll keep you posted.
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jish
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Re: Verapamil side effects/feeling whilst using it
Reply #6 - Mar 19th, 2014 at 6:39pm
 
At the moment it seems to come in waves for me, i have a reasonably clear head for 5 or 6 days where i barely notice it (except for a near constant mild tension feeling- which i'm sure is a verapamil side effect), then 1 or 2 days where the pressure sensation crops up more often like i've got to pop my ears every now and then. Coupled with the blocked nose/trigeminal nerve ache up in the nasal/sinus cavity you mention.

I've dropped 1 verapamil pill this week just to see whether the symptoms become more pronounced.

If they stay the same then in 5 days i'll drop another one and see where i am then. If the symptoms become more noticeable then i'm gonna taper up again.

I'm seeing my Neurologist on tuesday now so i'm gonna talk to him about it.

It's very hard to tell what's going on. I recon there is a good chance i'm probably still in a cycle though but it's hard to tell.
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Mike NZ
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Re: Verapamil side effects/feeling whilst using it
Reply #7 - Mar 19th, 2014 at 9:26pm
 
jish wrote on Mar 19th, 2014 at 6:39pm:
I've dropped 1 verapamil pill this week just to see whether the symptoms become more pronounced.

If they stay the same then in 5 days i'll drop another one and see where i am then. If the symptoms become more noticeable then i'm gonna taper up again.


It takes 7-10 days for a dose change to become effective, so I'd leave this at least 7 days before you change the dose again.

Make sure your doctor is involved in your tapering off.
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Mike NZ
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Re: Verapamil side effects/feeling whilst using it
Reply #8 - Mar 19th, 2014 at 9:28pm
 
Bob Johnson wrote on Mar 19th, 2014 at 7:12am:
It has always surprised me how rare a significant drop in BP is reported, especially when considering the massive doses we use as compared to when it's used for it's primary application for heaert/BP issues.


This always surprises me too.

It seems that if someone already has low blood pressure then verapamil will often drop the blood pressure, but for someone with CH and normal or high blood pressure then verapamil does not seem to have a significant impact.

I suspect there is some interesting biochemistry around why this is happening.
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Bob Johnson
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Re: Verapamil side effects/feeling whilst using it
Reply #9 - Mar 19th, 2014 at 9:38pm
 
I suspect it would be safe to say that most drugs have one or more side effects. The issue: is the particular effect something to be concerned about? Just idenifying it does not make the drug unsafe or the side effect a threat to us.

Verap & constipation: a side effect but an inconvenience, not a threat. Even when a side effect is a potential problem, we are still forced to make a judgmen: is the drug's benefit worth experiencing the side effect?
In medicine, we are constantly forced to make such judgments: value of the treatment vs. impact of the side effect. It's not an absolute, yes-no issue.

Too many people refuse to take a med when they see the potential side effect list, paying no attention the % (chance of experiencing the risk) of risk or the seriousness of the risk. This is why we have docs to guide us.
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« Last Edit: Mar 22nd, 2014 at 11:20am by Bob Johnson »  

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jish
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Re: Verapamil side effects/feeling whilst using it
Reply #10 - Mar 20th, 2014 at 6:54am
 
Mike NZ wrote on Mar 19th, 2014 at 9:26pm:
jish wrote on Mar 19th, 2014 at 6:39pm:
I've dropped 1 verapamil pill this week just to see whether the symptoms become more pronounced.

If they stay the same then in 5 days i'll drop another one and see where i am then. If the symptoms become more noticeable then i'm gonna taper up again.


It takes 7-10 days for a dose change to become effective, so I'd leave this at least 7 days before you change the dose again.

Make sure your doctor is involved in your tapering off.


This taper schedule is on my GP's orders (i was dropping each pill with a 7 day interval, it was just the second day of taking one less when i wrote that).

So i'm going to see my Neurologist because the GP doesn't seem to have a lot of experience with CH and i want a second opinion. Saying this, i get most in depth information on the condition and the preventative/abortive drugs on this website. Even the neurologist is a bit bemused by the CH condition.

I don't know if it's a coincidence or psychosomatic but since i've been taking 40mg less, the symptoms i listed above have become very slightly more pronounced.

When CH is gone does your whole head just feel completely normal even when your still on your prevent? Do you just know it's gone?

It's confusing for me because even when i wasn't in full on cluster headache cycle mode i'd wake up with a blocked nose on my left side and have sinusy type symptoms that would come up go all year round but with no cluster headaches.
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« Last Edit: Mar 20th, 2014 at 7:27am by jish »  
 
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Mike NZ
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Re: Verapamil side effects/feeling whilst using it
Reply #11 - Mar 20th, 2014 at 6:12pm
 
jish wrote on Mar 20th, 2014 at 6:54am:
I don't know if it's a coincidence or psychosomatic but since i've been taking 40mg less, the symptoms i listed above have become very slightly more pronounced.

When CH is gone does your whole head just feel completely normal even when your still on your prevent? Do you just know it's gone?

It's confusing for me because even when i wasn't in full on cluster headache cycle mode i'd wake up with a blocked nose on my left side and have sinusy type symptoms that would come up go all year round but with no cluster headaches.


It isn't easy to work out if a small change in symptoms is directly related to a small change in the dose of verapamil with the natural variability of CH plus considering symptoms over just a few days. It could be anything from a meaningless variation to a very meaningful one.

This is just one of the reasons for only slowly changing the verapamil dose so you get time to get a better understanding of what is happening and potentially why.

For me once a CH cycle is done I've had no further CH related symptoms until the next cycle comes along. I still get my migraines so my head is far from being perfectly well behaved though. I've seen other people report occasional one off CH like symptoms between cycles.
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Re: Verapamil side effects/feeling whilst using it
Reply #12 - Mar 22nd, 2014 at 11:13am
 
Well i'm assuming that the sensation that my ears are filling with pressure on my CH side kinda like a less intense version of when you hold your nose and blow is a CH symptom as i never have this feeling otherwise. Ho hum.
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Re: Verapamil side effects/feeling whilst using it
Reply #13 - Mar 22nd, 2014 at 7:55pm
 
I've been on Verapamil ER 180mg for about 4 years.  Other than constipation I don't really notice any other side effects.  Maybe because I've been on such a low dose or maybe I'm just used to it. I've never noticed any ringing or pressure in my head/ears.  Last year I lost about 45lbs and was getting dizzy and lightheaded a lot.  Neruo suggested I take 90mg for a week and then stop it altogether.  First night I stopped I got a ha, so I started taking it again immediately.  I've been in this current cycle since middle of Dec, Dr just upped dosage to 240mg a day.  Monitoring my bp closely so it doesn't get too low, but other than that things seem normal.
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Re: Verapamil side effects/feeling whilst using it
Reply #14 - Apr 2nd, 2014 at 12:30am
 
im about to start my taper off verapamil. I see my doctor tomorrow. ive been on 180 for a year now, originally my neuro prescribed 240 slow release,  it made me feel like sh@t. when I started batches d3 regime, I tapered down to 180.  I forgot to take my verapamil recently whilst on holiday for 3 days and I started getting headaches, not cluster symptoms, but a regular thumper. I always had lowish blood pressure, and at first I did feel a tad dizzy, but my b/p is around 125 now, so no problems. my first neuro gave me the fast release verapamil, after a few days I couldn't work, had to sit down all the time, constantly dizzy.
so im looking forward to tapering off tomorrow and only being on batches regime. 
im interested in getting my b/p tested tomorrow, because the last few days feel as though its dropped big time.
but overall, no real side effects at all.....
colin
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Re: Verapamil side effects/feeling whilst using it
Reply #15 - Apr 6th, 2014 at 1:43am
 
I found verapamil very effective and I seemingly had no side effects. Or so I thought... I happened to have some blood tests done that showed my liver enzymes were sky high. This is a relatively rare side efect of verapamil (around 1%) but it can be serious. Personally i would recommend getting your liver enzymes checked around 4 -6 weeks after first starting it. If you have been on it for a long time then it probably isn't necessary to have the test (you would know by know if your liver had been destroyed).
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Re: Verapamil side effects/feeling whilst using it
Reply #16 - Apr 6th, 2014 at 1:48am
 
jish wrote on Mar 20th, 2014 at 6:54am:
[quote author=2D252E3A600 link=1395178046/7#7 date=1395278809][quote author=53504A51390 link=1395178046/6#6 date=1395268779]
It's confusing for me because even when i wasn't in full on cluster headache cycle mode i'd wake up with a blocked nose on my left side and have sinusy type symptoms that would come up go all year round but with no cluster headaches.


I often get a runny nose in the absence of a headache (or continuing long after the headache has resolved). My neurologist believes it is definitely a component of CH that is causing it. However it still mainly occurs within cycles.
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Re: Verapamil side effects/feeling whilst using it
Reply #17 - Apr 20th, 2014 at 5:43am
 
I am currently on 600mg - 2x240mg Extended Release (during the day) and 1x120 Regular at bedtime.  I am still in the midst of a long cycle (going chronic????) and have found that this mixture of ER and Regular suits me well. 

As to the comment above that dosages changes take two weeks to have effect, that seems counter-intuitive to me.  When I miss one of my scheduled doses I find my symptoms immediately increase.  Not full on attacks, but enough nighttime pain to wake me up.  Happens pretty much every time I miss a dose.

On side effects, I do find that this dosage is quite an energy killer, and I am often napping in the middle of the day.  Nothing I can't live with, but definitely there.
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