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Norpace and side effects/ dry mouth, etc.

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angusjcampbell Retired from Healthcare Telecomm in NY City in 2004. Diagnosed with HCM in 2005, moved to Golden Isles region of SE Georgia in 2006. Now working for a non-profit ministry called International Seafarers Center at the busy seaport in Brunswick . Find out more about angusjcampbell
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  • Sarah
    replied
    Cool. We love that. I got the info on line, but don't have time to refind it now. i will try and post source later.

    Leave a comment:


  • angusjcampbell
    replied
    Sarah
    I really impressed Dr Sherrid yesterday when I walked in and started quoting half life and plasma levels on Norpace (With Credit to you) !!!! He was questioning his memeory for the exact figures but did not even find it in the PDA or on-line, at least not for the CR version, so He took my word for it.

    He was really quite impressed over-all with the knowledge I have pulled down from this site, so thank you again and thanks to all who contribute here!

    He had blood samples taken to look at the dysopirimide levels and we are tweaking the meds, starting first with the Atenolol, then the Norpace.

    Angus

    Leave a comment:


  • angusjcampbell
    replied
    Thanks Sarah

    I should have mentioned that I'm on the CR version of Norpace as it is. 250 mg 2x a day. I was starting to think a lower dosage 3x a day might be better, but now I am sometimes getting symptoms 2-3 hours after a dose. I did not see this in the first 30 days after starting the meds.

    Hence my moving up my doctor's appointment.

    Leave a comment:


  • Sarah
    replied
    peaks and valleys

    If you are not taking the long acting version, the Norpace could be fading out early. That is what happened to me. I would feel great for a few hours and then -bam- misery. So CR for me.

    Norpace regular plasma levels peak between 2.5 and 4 hours after dosing with an 8 hour half life and Norpace CR's is 5-6.5 hours and 12-15 hours. (half life being exactly what it sounds like.)

    If you are having symptoms just after a dose (within 30 min) then you could be a low point in the plasma level.

    Leave a comment:


  • angusjcampbell
    replied
    Thanks Sarah for the response. Wow, what an ordeal. I hope you are able to beat the afib and get things settled down.

    Cynaburst, I too have noticed the stiff and tired legs, but wrote it off to lack of exercise beyond long walks. Hmmm

    I've actually been experiencing symptoms again - SOB, pain and occasional dizziness - all at time that I would not expect, as in shortly after Norpace dosage or in the middle of the day with 4-5 hours to go to the next dose. Today I came home from the airport with heavy baggage and navigated subway stairs with ease. A couple of hours later and I could not walk my normal route through my neighborhood without bad symptoms and had to stop a few times.
    I canceled my May appointment with Dr Sherrid and am seeing him this week instead. Somethin' ain't right.

    I'll post results as I see them

    Leave a comment:


  • Sarah
    replied
    Me & Norpace

    I started Norpace in high school and it was in addition to a beta-blocker and also digitalis (Lanoxin).

    As the years passed, we dropped digitalis, changed my beta-blocker type a few times and all the while gradually increased the Norpace.

    However, I was never very good about taking my medication, being young and stupid and angry.

    By my late 20s, I was taking 150mg of Norpace CR (continuous release aka long-acting) of 4 times a day--yes 600mg. Even the pharmacy would balk at filling this script from time to time. I weighed 105lbs. But I tended to miss a dose here and there it didn't seem to make a difference in how I felt, and taking magnesium supplements were a huge improvement.

    (I never, ever stopped taking a beta-blocker b/c I had learned first hand in high school the meaning of rebound effect and withdrawal symptoms from going cold turkey on that stuff.)

    Anyway, my dad died in late 1999 (I was 30) and since my mom (already disabled from a stroke due to complications from HCM) was unable to do much, a large amount of the situation fell on me. It was an extremely complicated estate and I just didn't take care of myself. At one point, someone literally took me to my house and sat with me for two days so I woudn't do anything but rest.

    The day we put my parent's house on the market, I came home after a weekend of almost no sleep, took a hot bath (the final straw--dehydration), and promptly went into atrial fibrillation. I had zero ability to deal with the situation at that point, so I went to bed and prayed I would convert on my own.

    The next morning, still in afib, I called my doctor and they decided to cardiovert me that afternoon. When I asked about coumadin, they said I was in "the window" where I could not have developed a clot yet. (At this point, I may have been taking Norpace once a day or once in a while; not too clear anymore.)

    They cardioverted me and kept me overnight, mostly b/c I had requested a beta-blocker type change as well. The next morning, I had a transitory ischemic attack (TIA), and the morning after that, I went back into afib.

    Despite taking the Norpace back up to the previous levels, I couldn't get back into sinus, even with a cardioversion; and then proceeded to try every drug on the market except amiodarone. (you can read my rants about amio all over the board )

    I am now in afib and taking Toprol XL and coumadin.

    So that is the Sarah & Norpace Story. I guess the amazing part is that I was on such a huge dose and never really had dry mouth. I do, however, believe I have minor urinary tract issues as a result.

    Leave a comment:


  • Cynaburst
    replied
    If I might answer for Sarah (since I have read all of her previous postings on this subject), she took Norpace for ten years for anti-arrythmia (not to reduce obstruction). At some point she decided to go off of all of her meds, found out that was a bad idea, and when she went back on the Norpace, it didn't keep her out of a-fib anymore, so she had to try something else.

    As for my own observations re: Norpace, it is also doing a bang up job of reducing my gradient. My last echo showed a gradient of less than 20 mm/hg, no SAM and mild to moderate mitral regurg. My pre-Norpace echo showed a gradient of 85 mm/hg, severe mitral regurg and SAM, so my docs are thrilled with the results.

    As for side effects, I notice a tiny bit of dry mouth and lips, some urinary hesitancy (which was reduced some by a drop from 450 mg. to 400 mg. per day...I just started trying this dose) reduced sweating when I exercise (I actually like this side effect) and some muscle weakness in my legs. I don't much like this one. I am not sure what to think about the legs. They just feel sort of tired and stiff sometimes. I have noticed it in the middle of the night and after exercise. Another thing I have noticed which is a good side effect is that I seem to have dropped a couple of pounds even though I have not been eating particularly dietetically. I really hope that side effect keeps up!

    Leave a comment:


  • angusjcampbell
    replied
    Having lived with it more now, it's really not that bad after all, as the dry mouth comes and goes. Perhaps I happened to have it worse right when I was cooking.

    In any event, the Norpace is working really well for me. My SOB is all but gone under any normal circumstance until just before my next dose. If that continues, I'll ask Dr Sherrid about maybe going with less of a dose but 3 X a day.

    Sarah, I'm curious why you are off of Norpace. Problems? Find something else?

    Thanks

    Leave a comment:


  • Sarah
    replied
    food and air

    I was on Norpace for ten years, never had sob that badly.

    As for taste, well, possible. I have a really high tolerance for bland food. I was on Norpace from age 18 to 28 and I'm 36 now so I don't remember anything different.

    I'm sorry I don't have any advice (probably a first!).

    S

    Leave a comment:


  • Cynaburst
    replied
    Well, after echo and consult, my doctor advises upping the Norpace CR to 150 mg. 3 times a day, and reducing atenolol to 50 mg. twice a day. I am to report back for another echo in a week. The experiment continues...

    Leave a comment:


  • Cynaburst
    replied
    I have no answer to Angus, as he and I have been comparing notes on the side anyway, but I wanted to throw in another thing that I have been noticing to see if anyone else has had it...

    I have noticed in the last few days that I sometimes feel like I cannot breathe deeply, as if I am having to concentrate on breathing and that if I do not, I will not be able to breathe. Also, when I talk, I feel like I do not have enough "umph" behind my voice.

    Anyone experience this? I am now on 150 mg. of Norpace CR twice a day and 175 mg. of atenolol a day. I am seeing Dr. tomorrow for echo, and will obviously report these symptoms to him. I am hoping that an adjustment will help.

    Leave a comment:


  • angusjcampbell
    started a topic Norpace and side effects/ dry mouth, etc.

    Norpace and side effects/ dry mouth, etc.

    I've been on Norpace CR @ 250 mg 2x a day for three weeks. I fully expected the dry-mouth and have lived with it fine so far, even if a little annoying. But last night I was cooking with some pretty strong flavors and my sense of taste seems to have been dulled. It's as if the "chalky" feeling on the tongue from the dry-mouth has dulled the taste buds.

    So I am wondering if this has happened to others of if this is just me.

    If others have found this, what are the remedies for dry-mouth and does it help the sense of taste?

    Thanks

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