Aa
Back from Emory
Well these past couple of days have been very good! Increased nitro by adding another 0.4mg patch bringing me up to .16mg 24/7. No chest pain, spasms and very little chest tightening. I'm not exactly jumping hurdles but I'm happy about the reduction of pain. I get so used to the discomfort that it's hard to keep clear that this is not the way I should feel. Emory and their other research partners do not have another patient like me so I retain my Poster Child title for this cardiac endothelial dysfunction. Great! So I manage my own nitro and see what continues to work for me; I'll use more if I have to as I don't have much choice and too little nitro gets me quickly declining to pain and SOB.
Everthing else health wise is great, lipids, BP, blood work. Emory still feels that my body has reduced or given up making nitric oxide which allows the vessels to expand when a cardica demand is made. Not a problem with the endothelial of cardiac vessels and their receptors for nitric oxide because I really do well with the nitro. The spasms are either from the small microvessels or, as they reproduced during provocative tesing in May 2008, a spasm up into the LAD. I remain on Cardizem.
I am to return to Emory in January for a cardiac MRI to see if there is any evidence of heart damage; it's a difficult thing to look for but Emory has the staff there with that experience. I really want to know what, if any, damage is being done as this will affect other healthcare descisions I make.
In the meantime, have more nitro without any side effects, except happiness. Joan.
Everthing else health wise is great, lipids, BP, blood work. Emory still feels that my body has reduced or given up making nitric oxide which allows the vessels to expand when a cardica demand is made. Not a problem with the endothelial of cardiac vessels and their receptors for nitric oxide because I really do well with the nitro. The spasms are either from the small microvessels or, as they reproduced during provocative tesing in May 2008, a spasm up into the LAD. I remain on Cardizem.
I am to return to Emory in January for a cardiac MRI to see if there is any evidence of heart damage; it's a difficult thing to look for but Emory has the staff there with that experience. I really want to know what, if any, damage is being done as this will affect other healthcare descisions I make.
In the meantime, have more nitro without any side effects, except happiness. Joan.
I can SO relate to the poster child thing. As for what is really at the root of MVD there are many ideas. My cardiologist is currently researching the effect of progesterone on the arteries. The theory is that during pregnancy some women get good relief of CP symptoms when you would expect that the increased cardiac demand would increase CP. The progesterone acts as a relaxant. It worked in monkeys. I am trying it with mixed results. During the summer I was feeling a little better, but I was also less active so it is hard to say if the meds or the reduced activity made things better. I have been in so much pain lately that I am afraid to stop it. What if it is helping more than I realize and if I stop I won't be able to continue my class at school? That class keeps me sane.
Another theory is the lack of nitric oxide production. Some people report some improvement with L-arginine supplementation for this. Then there is the hyper autonomic nervous system idea. Or the theory they were studying in Japan about metabolic issues in the smooth muscles. They brought a drug to market (a rho-kinase inhibitor) but I don't know if it has been approved here.
Essentially no one really knows. At least it is being studied now though. When I was first diagnosed there was very little known or studied. All anyone knew was that I was too young to have it, but there it was. It can be frustrating. I have tried many things with very little improvement. The pain meds at least let me get off my couch. I will take that small victory.
Another theory is the lack of nitric oxide production. Some people report some improvement with L-arginine supplementation for this. Then there is the hyper autonomic nervous system idea. Or the theory they were studying in Japan about metabolic issues in the smooth muscles. They brought a drug to market (a rho-kinase inhibitor) but I don't know if it has been approved here.
Essentially no one really knows. At least it is being studied now though. When I was first diagnosed there was very little known or studied. All anyone knew was that I was too young to have it, but there it was. It can be frustrating. I have tried many things with very little improvement. The pain meds at least let me get off my couch. I will take that small victory.
I'm In Illinois. Well To Try some different Type Of Meds to See What Works For Me & To Check My Pressures Again Cause In april My Pressures In My Heart Was High. I Have Decline The Cath It's to Soon Right Now.
Thx for note. What is the reason for your cath? I had tried imdur and ranexa and it didn't do a thing for me. And remind me again where you are? Joan.
Well I'm Glad you Are Getting The Relief You Need. I'm On Cardizem 240 mgs Now and It's Helping I'm Aslo On Imdur and Nitro when Needed. So Far This Mix Is Working Even Though I Still Have Some Break Thru Moments @ Times. They Want To Do A Heart Cath Again Even Though I Had One In April So I Will See About That. Take Care Joan.
Day 3 and still feeling good. I am on Cardizem (diltiazem) 120 twice a day and that helps with spasms but nitro is my 'fix'. I have no choice of NOT being on it as other vasodilators( Imdur, Ranexa or other combos) do not do anything for me at all. The heart test in January will be a cardiac MRI back at Emory where they are trained to look specifically at the subendocardium. I will refuse any stress tests as I already know what happens when my heart rate increases and the last two tests had to be stopped.The literature on nitro does talk about some intolerance but I have no other side effects. I literally have no choice but to continue the nitro and titrate the amount according to how I feel and not what a medical book states; oh yeah, no book on this one! I want to able to see this thru and find out why my body seems like it is not supplying the miminal amount nitric oxide needed for simple cardiac demand via the cardiac microvessels. So happy heart for me is via my nitro! Thanks for asking. Joan.
So glad you're getting some relief. I can't imagine living on nitro like that. And how long can a person live with the nitro boosts? Isn't there something else that could relax the vessels without being so powerful and immediate? I know my Diltiazem is supposed to help with that but not sure if that would be enough in your case. Dilt. is also used for Raynauds as well. I guess just the thought of nitro is scary to me.
Any idea how they'll test for heart damage in January? A nuclear stress test perhaps?
Sorry you're still the poster child for this problem. Perhaps they'll come up with some new ideas next year. Happy heart to you.
irene
Any idea how they'll test for heart damage in January? A nuclear stress test perhaps?
Sorry you're still the poster child for this problem. Perhaps they'll come up with some new ideas next year. Happy heart to you.
irene
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