UGH, can't break this cycle.....

• By yarnkitty
• Reply 3325444
• August 27, 2012 at 2:04 pm
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Hi Katie. Sorry you've been feeling so bad. I wonder if some pain medicine would help you be more comfortable? Have you talked to your cardiologist about how bad things are?

• By katie_colorado
• Reply 3325545
• August 27, 2012 at 2:43 pm
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Not since last week. He knows I go through these cycles, and he gives me Ativan to help break the cycle. I can get the pain & symptoms down from a8 to a 4, but I can't do anything, even walk around house & it comes back. I'm fairly comfortable now, but I can feel the beginnings of it starting again, my Ativan is wearing off & it's almost time for more, but I have been in bed or couch for several days...
I guess I just needed to share with people that get it...
Thanks Yarn Kitty..
Have a pain free day yourself...
Katie

• By Floraggma
• Reply 3325953
• August 27, 2012 at 5:38 pm
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Hi Katie,
I wonder if your upcoming OHS is responsible for this upswing in symptoms? I'm sure you have already thought of that :). I am sorry that this is happening. Thinking of you and call me if you like.

• By swissdots
• Reply 3326565
• August 27, 2012 at 9:45 pm
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So sorry to hear you're in a particularly pesky pain cycle.
It sounds like a nasty flare up and I want to offer support and (((((hugs)))))).
I hope you get pain relief very soon and can get a comfortable night's rest tonight.
If you don't feel better tomorrow and the cycle continues perhaps you should call your Cardio about a med adjustment.
I hope you're feeling much better very soon.
Swiss

• By cashmere8
• Reply 3328743
• August 28, 2012 at 4:57 pm
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Katie-colorado, here I thought I was the only one, can't break the cycle either, too scared to up my Isosobide Dinitrate dose frm 15mg am and 15 mg pm, .6 patch, again scared to up the dose myself it brings my BP low, too low, as it is my BP averaging 80/57. Pain wakes me up 5am I toss and turn, and it won't let up till I get up @ 7:30 to get my stash, by then there's a lot of pain, that takes too long to fade but never completely unless I lay down most of my day. If, and when I feel like going out its usually by scooter/ATV whom my grandchildren named Ginger:-) I wanted to post myself but I don't feel that I could adequately describe my symptoms! Your post says it all and my prayers are with you IT'S TOO MUCH SUFFERING:-(

Is there any serious harm to put up with the pain that's @ 4-5 till my next dosage time? Just asking, I go see my Cardio on the 12 of Sept.

(((((hugs)))))

• By yarnkitty
• Reply 3329034
• August 28, 2012 at 7:09 pm
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Cashmere, when you have chest pain your heart is not getting enough oxygen. You need to discuss your ongoing pain with your cardiologist. If you can't get it controlled with the meds you have at home you may need to be in the hospital where you can get fluids to support your BP and IV pain medication. Getting you out of pain is not just a comfort measure, it decreases the strain on your heart. Don't try to tough it out.

• By cashmere8
• Reply 3330635
• August 29, 2012 at 11:29 am
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Yarnkitty thank you, if our health care Professionals have the same view as yours and, or maybe the same facts that we have about this BEAST MVD we would all be in a good place right now, when I was in emerg last time with the same breakthrough pain the ER doctor asked me what do they usually do when you have the pain? (And that's after I told him what my Cardiologist thinks it is, even then he said its probably acid reflux) see what I mean? So I told him morphine takest it away, at the time I didn't have a clue about nitro drip, and I said they usually take troponin and enzyme, but I turned down morphine, by then my pain was suppressed almost gone because of the oxygen in my nose.

This morning I upped my patch dose to .8 I will go see my GP and We'll go from there. Developed a dislike to hospitals it's cold in there uncomfortable stretchers you lay on as hard as rocks, no pillows, nurses may or may not offer a warm blanket, and not to mention how busy they are in our small regional hospital and only 2 cardiologist in the city. I don't like to complain, but it is what it is!
Sorry! Just venting...

• By frykwoman
• Reply 3330871
• August 29, 2012 at 1:01 pm
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Hi Katie,
I wonder if you're feeling any better now? Your angina storms sound a lot like mine-- ramping up and up and up on all the usually helpful drugs, until I feel well and truly saturated with nitro, benzo's and opioids.
I just got out of the hospital after just such a storm. It was really helpful to get IV meds (dilaudid and nitro) and some tests to see if something bigger was going on (I had a little perfusion problem with my heart), but no MI.
The upshot of my visit was that I got a sleep study, a pain clinic referral for a possible neurostimulation implant (still in the eval process,) and some close follow-up with my cardiologist.
I'm most excited about the possibility of getting a neurostimulation device implanted in my spine that is used for angina relief. I've read a bunch of studies that show it's efficacy and am really impressed. Both my pain doc and my cardiologist think I'm a great candidate for this procedure/device. I'll let you know how it works for me-- maybe it'll be something that you could consider for yourself. I'll keep in touch.
Meanwhile, I just have to say that if I had the symtoms you're talking about, I'd be in the hospital and demanding some better treatment for this overwhelming angina. You deserve much much better than this, my dear!
Sending you big love and hoping for all the BEST for you. Email me if you'd like to talk further about this stuff.
Love,
Melissa

• By MaryLG
• Reply 3332267 · In reply to 3330871 by frykwoman
• August 29, 2012 at 10:25 pm
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Hi Gals,

Lots of love and prayers both your ways for relief from the cycle. I was particularly happy to hear that you're getting a sleep study, too, Melissa, in addition to the neuro-stim eval. My CPAP really changed my situation...hope it can help you. Katie..I hope you're finding a break from this. It's gotta come sometime and I am willing it sooner rather than later.

Love to you both, xoxo Mary

• By katie_colorado
• Reply 3332420
• August 29, 2012 at 11:23 pm
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Thanks Girls.. Finally got a bit of a break I've been adding a .2 to my .6 & .4daily patch& an extra half Ativan. at seems to help. Dr Pepine says add what I need tobreak the cycle but now I'm up to a total of .12 patch daily, about 2 - 1.0 Ativan daily, plus my famous "double shots" as needed with any exertion
I go back to Gainesville next week for pre-surgery testing, PFT, Echo & another Cath. Then surgery 10/17. I think the waiting is taking its toll, too. I'm not jumping for joy to have my chest cracked open but a slim part of me hopes the progression I'm feeling is part aorta, etc.
But today & part of yesterday I've had some repreive so I'll take it!! After I recover from this surgery & my MVD symptoms rear their uglies again, then I'll attack that.
Thanks for all the well wishes, I could feel the love & hugs all across the country!!!
Katie