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Low BP and High Pulse on Isoptin - how low/high is too much?

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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
Hi All

I was given a BP / Pulse monitor from my GP for a week to take my BP sitting & standing 3 times a day, as my neuro doesn't want my systolic BP under 100 on the veparamil. He also doesn't want my pulse to be 'too high'. Whatever that is. I'm a bit concerned about the results.

About 1/2 the readings are below 100 systolic (one got down to 88/72 with pulse 100) - and my resting pulse rate has been between 72 / min and103 / min.

Now I'm worried that they're going to take me off the only med that has shown to be effective for me!!!! I've even dropped more headaches in the last month - down to just over 20/month.

I've had no low BP symptoms (dizziness, tingling, tiredness, ringing ears) that I didn't have already, pre-medication. The only thing I've noticed is some mild 'racing heart' feelings - which I had previously anyway.

Has anyone else been taken off this medication due to BP / Pulse readings??
Did your CHs come back with a vengence?

I don't want to go back to where I was at the beginning of the year. sad

Thanks

KatherineThis post was edited on 29/08/2012 at 7:44 am
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Hi Katherine,
that sounds suspiciously like your Doctor is pissing in the wind. Keep doing what you've been doing- if you've gone from hundreds down to dozens of attacks, you're doing something right.
With luck, you'll soon be green icon
cheers peter.
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
BTW - I had an ECG this time last year (normal) and am now due for another one as I started the Isoptin 6 months ago.

K
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
Thanks Peter - I'll stick to my guns on this one. It's taken ages to get to where I am now and I wouldn't be happy going back.

If they make a fuss, a compromise from me would be to wait til my next ECG check & MAYBE if I have to reduce the dose a bit.

I'm only on 240mg SR / day but because I already had reasonably low BP the neuro didn't want me to go higher without close monitoring.

Thanks again - just thinking about going backwards is giving me palpatations! ;-)

Wishing you green too

KThis post was edited on 29/08/2012 at 8:11 am
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Ben

(Member)
From:
116 total posts
Currently suffering :(
Hi Katherine,
Firstly, let me tell you about an "anxiety loop" that can get you into big trouble. Measuring BP is fine, I do it regularly, but don't become too preoccupied with your changes in BP, it can make you anxious and increase your awareness of what your heart is doing. Many Cardiologists have explained to me at great length that "Palpitations" (By their true medical definition) are your "increased awareness" of what your heart is, or may be doing. There may or may not be underlying issues.
With increased awareness comes increased vigilance, you may check BP more often than you need to, leading to anxiety about what your heart is doing.
Anxiety makes your heart behave differently, then you pay it more attention, measure BP again, only to see different readings that raise anxiety levels, etc etc.
Around and around it can go. I did this catch 22 for 2 years and ended up on Xanax for anxiety before I was able to break the loop of "Oh no! What is my heart doing?".

Watch out for domestic grade BP monitors, I get false/erratic readings all the time.
I have obtained far more accurate BP information (and peace of mind) and ECG information by staying in hospital for 4 hours and having my Obs monitored on their more accurate equipment. A 24hr ECG using a halter monitor helped me get an accurate picture of what my heart was doing. http://en.wikipedia.org/wiki/Holter_monitor

When I was on Verapamil, my heart started working harder and beating erratically, to keep up with the BP drop.
It would get slower and slower, then fibrillate. Then slow again...
Caused me no end of trouble...

I no longer use Verapamil.
Since using Verapamil, I now have to take Atenolol to keep my heart rhythm steady.
My heart rate sits at 55-60 BPM.
My BP sits between 110/70 - 135/85, but stays regulated by Atenolol these days.
Nursing staff show concern whenever my BP goes below 100, or my heart rate below 55 BPM. Some athletes have heart rates as low as 35 BPM and still function fine.

"Only" 240mg, is the top end of the dose range, for the purpose for which the drug was originally intended. Remember, there can be a fine line between finding dose efficacy and toxicity. Dose ranges for CH exceeding 240mg are "off label" or "experimental use" and should be treated as such; with caution (and ECGs).

Verapamil use should ALWAYS be checked with ECG monitoring.
Typically, around 20% of CHers will experience tolerance problems with Verapamil.
I will let Pr Goadsby fill you in on that one.
Pr. Goadsby on Verapamil @ 3:10 into the video.
http://www.youtube.com/watch?v=f66RxrBm6_4&feature=related

They are throwing the stuff around, in my opinion.
Latest news I heard coming out of Goadsby's team was that Verapamil does not cross the blood-brain barrier as well as first thought. Their solution - already "Industrial quantities" of Verapamil are now going up to doses over 1000mg in CH treatment.
When used in such high doses - it needs to be monitored more closely. Routine ECGs were not performed on me whilst I used the drug. I was left with a permanent heart rhythm issue after ramping up Verapamil to only 360mg per day. My heart nearly ground to a halt. This is outside the limits of my medical understanding, but I believe the "P-R" and/or "Q-A" intervals, as seen on my ECG were abnormal at the time, after unmonitored treatment with Verapamil.

A "baseline" or "control" ECG should be carried out before using Verapamil to see your normal heart function. An ECG is required every time you escalate dosages. (Please check with your Dr for routine tests and protocols, I am not a Doctor).

It has been over 6 years since I trialled Verapamil and my heart rhythm has been given the all clear by a CVIU, so long as I stay on Atenolol (Noten) to keep it ticking regularly like a clock. If you are on Verapamil for CH, INSIST that a routine ECG be carried out on a regular basis, or you could be stuck on another drug FOR LIFE to attenuate heart rhythm, as I am. I am 37 years old. An alternative that is overlooked often here, is Verapamil's distant cousin - Diltiazem, this may be worth investigating.

If Verapamil has reduced your CH attack frequency, this shows that there are options for you. Lithium, Topamax etc. I stuck with Verapamil, as I was determined it would be the drug that worked for me, it was a big mistake.

Don't panic - it makes side effects worse.
Just know your drug well and take solace in the all clear from ECG results.
Verapamil may not be the drug for you, unfortunately.
Ceasing use of a drug when not tolerated can feel like a big blow, I know, I have done this well over 60 times. But, persistence cost me dearly, so make sure those Docs do their ECGs.

No, I did not get belted with CH when I withdrew Verapamil.
In fact, I had fewer attacks. I think this was due to Verapamil wearing off between doses, I could set my watch to the rebound attacks every 8 hours when I was taking it.

By the way, did I mention ECGs? smile

Cheers, Ben.This post was edited on 29/08/2012 at 10:01 am
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
Thanks Ben - it's good to know that there are other similar options if they need to take me off the verapamil.

I was please the Doc gave me an ECG before starting any medications at all - so they've got good baseline data to assess how the medications affect my heart function.

Because my BP has always been relatively low, and pulse somewhat high and a bit thready, the docs were a bit concerned about putting me on a med that affects BP, but wanted it closely monitored (hence borrowing the take home BP monitor and getting another ECG).

I've tried not to worry too much about the readings (until they got down to 88) especially because I've been so ecstatic about the efficacy of the drug. But it's still in the back of my mind that they'll take me off it now that I'm consistently below the golden 100 the neuro wanted.

I'll have to see what the doc says when I hand in the results - but I'll take note of the family of meds you mentioned as possible alternatives. I'm not booked in to the neuro again til 1 November and the next ECG is booked for before then.

Thanks again - although its sad that so many have gone on the medication-merry-go-round, I value the information, feedback and support I get from you all.

(and yes, I think you might have mentioned ECGs once or twice icon)

Take care
Katherine
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Silent Planet

(Member)
From: Freshwater
261 total posts
Currently suffering :(
Katherine,

it is always good to check your BP and heart rate when on Verapamil, if you always have a low BP and since starting the meds it hasnt made any changes and you are feeling no adverse reactions to the meds then there should be no reason to take you off it as lonf as you stay monitored. I was on doses as high as 960mg per day and had no ill effects excpet a little dizzines when i increased the doses all the time but that settled down after a week.

If the meds are working then when you see the Dr's again then stand your ground and let them know that it is wrking and that you would like to stay on it for a bit longer, if that;s what you want to do.

Matt
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
Thanks Matt - as I suspected when I handed my data over to the Dr she has called me in for her next available apt (Monday afternoon). So I'll see what she has to say.

Up until the last week the verapamil has been working really well. But this week I've already had more headaches of higher intensity than I had all last month sad

Oh well - I've had some really good relief over the last few months which has been great!

K
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Hi Katherine,
very sad to hear things have gone sour again. Can you think of anything you've done differently that might account for it? Something you've eaten or been eating- less water perhaps, or a drop in vitamins?
Bear in mind, your good patch might have been because of something you started well before then- change (good or bad) isn't always immediate.
Here's hoping you get back to good times soon.

cheers peter.
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
Thanks Peter

I've gone through my diary to see if I've done anything different - the only thing I've changed is I've been making and eating more plain yoghurt!

I thought maybe the lead up to the equinox/start of spring as I understand some people seem to get CHs seasonally,, but changing seasons have never previously changed my pattern. I had noticed that sleeping in seems to trigger more for the day - so I haven't been sleeping in! Just in case.

I left work about 3 months ago, which I thought may have helped (along with the meds), so I was hopeful.

Who knows though - these CHs seem to do what they like and just when you think you're on the right track they do their own thing!

cheers
Katherine
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