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jhoffmanj
@jhoffmanj

Posts: 24
Joined: Apr 27, 2016

Norpace`

Posted by @jhoffmanj, Dec 23, 2016

Hello, Since Oct 10, 2016 and after being released from hospital, Dr. told me another ablation would likely not address my AFIB and put my on Norpace. I take 2 150 mg in morning and 2 150 at night. My heart beat is regular and my BP is good. However I have ever present bloating, gas and big time constipation. I also seemed to have less energy but that may be due to my heart condition. Anyone taking Norpace and are you having similar issues. Is there another drug I could take.

REPLY

I’m tagging both @cynaburst and @debcrawford who have both taken Norpace in the past to see if they have experience they could share. I also wonder if @vivian88 @onewholovesrock or @PatMattos might have something to add about afib management with HCM.

I took Norpace for a few years. It does cause constipation and also caused me to have dry mouth and urinary retention. There is a drug called mestinon which treats myesthenia gravis which is supposed to help with the side effects from Norpace. I never tried it myself, but it is something worth asking about. There are also other anti-arrythmic drugs which may do the same job but allow you to feel better. The problem is that anti-arrythmics are all very strong drugs and often come at the price of side effects.

Are you seen at a HCM specialty center?

@cynaburst

I took Norpace for a few years. It does cause constipation and also caused me to have dry mouth and urinary retention. There is a drug called mestinon which treats myesthenia gravis which is supposed to help with the side effects from Norpace. I never tried it myself, but it is something worth asking about. There are also other anti-arrythmic drugs which may do the same job but allow you to feel better. The problem is that anti-arrythmics are all very strong drugs and often come at the price of side effects.

Are you seen at a HCM specialty center?

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Thanks for your help. I have not heard of an HCM specialty center. I see a cardiologist and an electro MD. He implanted my ICD and performed the two cardiac ablations I have had. `Why did you stop Norpace? I will be 81 in June 17 so my situation may be a bit different than yours. Again, thanks for your help and interest.

@cynaburst

I took Norpace for a few years. It does cause constipation and also caused me to have dry mouth and urinary retention. There is a drug called mestinon which treats myesthenia gravis which is supposed to help with the side effects from Norpace. I never tried it myself, but it is something worth asking about. There are also other anti-arrythmic drugs which may do the same job but allow you to feel better. The problem is that anti-arrythmics are all very strong drugs and often come at the price of side effects.

Are you seen at a HCM specialty center?

Jump to this post

I took the drug to address my obstructive HCM. Norpace, in addition to being an anti-arrhythmic, is known to lessen the pressure gradient in the obstructive form of HCM. I ultimately went on to have a myectomy, so the drug was not needed for that purpose any longer, though I did continue it for a bit after surgery to address some post-surgical atrial fibrillation which was caused by the surgery. Once those stopped, there was no more need.

Where do you live? Maybe I can help point you to a place that can help you figure out your next step. Of course Mayo Clinic is one of the best in the world.

@cynaburst

I took Norpace for a few years. It does cause constipation and also caused me to have dry mouth and urinary retention. There is a drug called mestinon which treats myesthenia gravis which is supposed to help with the side effects from Norpace. I never tried it myself, but it is something worth asking about. There are also other anti-arrythmic drugs which may do the same job but allow you to feel better. The problem is that anti-arrythmics are all very strong drugs and often come at the price of side effects.

Are you seen at a HCM specialty center?

Jump to this post

I live in NJ. I watched the video from Mayo about the septul and atipical myectomy. It appeared to be something that would help me. I am 80 plus 6 months old. I am going to ask my Dr. in early January about these procedures. Did you have your operation done at Mayo? Thanks.

I did have my myectomy at Mayo 10 1/2 years ago.

If you want to check in somewhere closer to home, there is a HCM Center in Morristown. They may be able to point you in the right direction.

http://www.atlantichealth.org/gagnon/our-services/treatment-services/hypertrophic-cardiomyopathy-center.html

I no longer take Norpace, I had some side effects from it. One of them being forgetfulness, I had to write on my bathroom mirrors to remind me to take my meds.

@debcrawford

I no longer take Norpace, I had some side effects from it. One of them being forgetfulness, I had to write on my bathroom mirrors to remind me to take my meds.

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What meds are you or did you take in place of Norpace?

I am taking 200mg of Metoprolol daily and 75mg of Verapamil daily.

@debcrawford

I am taking 200mg of Metoprolol daily and 75mg of Verapamil daily.

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Thanks. I see my Dr. on 1/11. I have to get off this med. The bloating and constipation are barely tolerable.

I also had bad constipation, they had me take stool softners but they didn’t do anything!

@debcrawford

I also had bad constipation, they had me take stool softners but they didn’t do anything!

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Thanks. What bothers me too is the constant feeling that I have my abdomen blown up like a volley ball.

Not a good feeling!

I live in Taiwan where there is a lack of info on HCM and lack of medical resources for HCM patients. However, Taiwan has a medical center which leads the world in arrhythmia treatment, especially for Afib. So I underwent a trans catheter RF ablation procedure in Taiwan before I ventured out to Mayo for apical myectomy. I had both Afib and VT at that time, and my EP was able to take care of both in a 4 hr procedure. I have been taking anti arrhythmia drug called Multaq (Dronedarone) and beta blocker Concor (bisoprolol), plus anti coagulant Xarelto, even to now (15 months post apical myectomy). Since my ablation procedure 2 years ago, I have not been found to have recurrence of Afib or VT. I do not have an ICD implanted and have never been put on Norpace.
@jhoffmanj, sorry I don’t know if I am being helpful to you at all. Perhaps you can ask your Dr. to change your medication to Multaq (which, from what I understand, also has side effects, but it works on me perfectly)

@vivian88 How wonderful that you were able to find good help! Thanks for sharing your story.

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