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Mar 18, 2010 - 22 comments
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March 2010: Call me the Sleep Crash Dummy
Well, some things just work out in the strangest ways.
I have friends (respiratory therapist/doctor) who work with a Sleep Med Clinic. They are trying out a couple of different models of sleep apnea test units for 'at home' use for their patients. They asked me to try out a model and comment back to them from a nurse perspective as to the instructions and any potential issues with its use. So I tried it.
Long story short, the monitor showed 711 of hypo and apnea events in 9 hours. Obstructive Sleep Apnea. I was then referred to a Sleep Lab the next day for a more formal study where the results were worse ( 70 periods of not breathing in 2 hours) and even with CPAP ( continuous positive airway pressure) mask applied due to decreasing oxygen levels, my heart rates increased and my respirations stopped. With CPAP I had continuing events of sustained apnea up to 34 seconds.
I have had no sleep complaints, with the exception of awakening during the night with what I thought to be 'hot flashes'. During my 2008 cardiac arrest and subsequent days of care, there were no problems with oxygen levels. No history of day sleepiness or nodding off, but of course, my days are trumped by vasospasms and variant angina.
This Sleep Study result, on top of my current heart state with MVD, put me at great risk for a heart attack, stroke and mini-strokes-TIA (transient ischemic attacks) all in the absence of any CAD. This also explains why I'm so tired and with problematic chest pain even with the amount of nitro I wear each day. My heart was not getting any rest and was under a great deal of stress around the clock. I have been very careful about getting to bed early so that sleep/rest time would be my healing time. But, little did I know that I was under more stress trying to sleep!
When professionals asked about my nights I could only describe them as very good: no exertion=no chest pain. When I did complain about waking with rapid heart beats, I stated that I was also feeling like I was having 'hot flashes'. Thank goodness I had my nitro patch at night, something that is NOT recommended 24/7, but needed for me. And I was 'hot' alright; I wasn't breathing. Previous years of lung function testing were negative.
CPAP intervention could be very significant for reducing my cardiac pain PLUS I get some rest. This has been going on for 14 months when I checked back to my notes about 'hot flashes' which turns out to be my heart racing under duress and trying to breathe.......really often!
Types of apnea are known to be associated with people with CAD problems, not necessarily the dysfunction that I might have, but my current research, with help from my friends, indicate a very strong scientific study relationship with lack of oxygen, that stressor on the vascular system and the impact on the endothelial and that dysfunction. Again, another new area of research. I am hopeful that REM ( the good sleep) sleep will reduce those complicated neural and metabolic processes on the heart and that I have relief from pain. I'm now going to join the Sleep Apnea forum and have members look at this connection.
So you see...a favor for a friend turned out to be a favor for me. After the night we learned about the first test results and we were home in bed my husband said: “Hope to see you in the morning”, to which I responded: “Hell, I'm not closing my eyes!”
Another journey. CPAP and nitro are my friends. I may not have stated the correct responses to my sleep habits. But to me it felt like 'hot flashes' and I'm one of billions of women with the similar complaint. I just don't know how else to have described these night time events. Joan.
Well, some things just work out in the strangest ways.
I have friends (respiratory therapist/doctor) who work with a Sleep Med Clinic. They are trying out a couple of different models of sleep apnea test units for 'at home' use for their patients. They asked me to try out a model and comment back to them from a nurse perspective as to the instructions and any potential issues with its use. So I tried it.
Long story short, the monitor showed 711 of hypo and apnea events in 9 hours. Obstructive Sleep Apnea. I was then referred to a Sleep Lab the next day for a more formal study where the results were worse ( 70 periods of not breathing in 2 hours) and even with CPAP ( continuous positive airway pressure) mask applied due to decreasing oxygen levels, my heart rates increased and my respirations stopped. With CPAP I had continuing events of sustained apnea up to 34 seconds.
I have had no sleep complaints, with the exception of awakening during the night with what I thought to be 'hot flashes'. During my 2008 cardiac arrest and subsequent days of care, there were no problems with oxygen levels. No history of day sleepiness or nodding off, but of course, my days are trumped by vasospasms and variant angina.
This Sleep Study result, on top of my current heart state with MVD, put me at great risk for a heart attack, stroke and mini-strokes-TIA (transient ischemic attacks) all in the absence of any CAD. This also explains why I'm so tired and with problematic chest pain even with the amount of nitro I wear each day. My heart was not getting any rest and was under a great deal of stress around the clock. I have been very careful about getting to bed early so that sleep/rest time would be my healing time. But, little did I know that I was under more stress trying to sleep!
When professionals asked about my nights I could only describe them as very good: no exertion=no chest pain. When I did complain about waking with rapid heart beats, I stated that I was also feeling like I was having 'hot flashes'. Thank goodness I had my nitro patch at night, something that is NOT recommended 24/7, but needed for me. And I was 'hot' alright; I wasn't breathing. Previous years of lung function testing were negative.
CPAP intervention could be very significant for reducing my cardiac pain PLUS I get some rest. This has been going on for 14 months when I checked back to my notes about 'hot flashes' which turns out to be my heart racing under duress and trying to breathe.......really often!
Types of apnea are known to be associated with people with CAD problems, not necessarily the dysfunction that I might have, but my current research, with help from my friends, indicate a very strong scientific study relationship with lack of oxygen, that stressor on the vascular system and the impact on the endothelial and that dysfunction. Again, another new area of research. I am hopeful that REM ( the good sleep) sleep will reduce those complicated neural and metabolic processes on the heart and that I have relief from pain. I'm now going to join the Sleep Apnea forum and have members look at this connection.
So you see...a favor for a friend turned out to be a favor for me. After the night we learned about the first test results and we were home in bed my husband said: “Hope to see you in the morning”, to which I responded: “Hell, I'm not closing my eyes!”
Another journey. CPAP and nitro are my friends. I may not have stated the correct responses to my sleep habits. But to me it felt like 'hot flashes' and I'm one of billions of women with the similar complaint. I just don't know how else to have described these night time events. Joan.
Hi Joan,
Hope you are feeling stronger each day. Just wanted to get your thoughts on some new things for me. Having night spasms now exclusively still with ear pain at the same time. My cardiologist now thinks it would be a good idea for me to have a cardiac catheterization. He says he can look at blood flow issues as well as the smaller microvessels. Is that accurate to the best of your knowledge? Will he really be able to see the small vessels during the cardiac cath? I am still taking norvasc 5 mg am AND pm. His thinking is after taking this step (which will mean I have had every test known to man oops I mean womankind) LOL He will probably put me on a Nitro patch at night only. He of course will angioplast if necessary. Just wondering what you thought about this. You can email me if that is easier.
Thanks
Debbie from Atlanta
Hope you are feeling stronger each day. Just wanted to get your thoughts on some new things for me. Having night spasms now exclusively still with ear pain at the same time. My cardiologist now thinks it would be a good idea for me to have a cardiac catheterization. He says he can look at blood flow issues as well as the smaller microvessels. Is that accurate to the best of your knowledge? Will he really be able to see the small vessels during the cardiac cath? I am still taking norvasc 5 mg am AND pm. His thinking is after taking this step (which will mean I have had every test known to man oops I mean womankind) LOL He will probably put me on a Nitro patch at night only. He of course will angioplast if necessary. Just wondering what you thought about this. You can email me if that is easier.
Thanks
Debbie from Atlanta
I am feeling much more rested with CPAP and apnea events went from 9-10 per hour down to 2. I feel the difference between a spasming heart and a hot flash!Night spasms are not good.Have him get you on a trial of nitro patch now! Flow studies with the cath can be done but they cannot "see" the m-vessels but can watch their behavior by the flow of blood into the heart muscle from the larger coronaries down into the heart muscle web of tee tiny vessels.The cath for angioplasty will only take place IF you have significant vessel disease of LARGER coronaries. When was your last cath?It's that testing for flow and shear stress studies on my heart that led to the arrest.Ask what he's using? His answer may be the testing drug combo of adenosine and acetycholine. Are they involved with the NIH protocol study for this test?Get the nitro patch as a trial (altho' they'll tell you to quit using it before cath and testing). Have they tried you on Ranexa or Imdur?I'm at Emory next Thursday.
Joan this is my 1st cath. What if I am not spasming (sp?) during the procedure? Will they be able to tell anything? He told me no nitro patch till after catheterization. he wants to see the blood flow which I guess no other test I have had has shown him.I don't know what you mean by what "drug" combo" he is using. I though it was dye that goes in the cath. the only thing I am taking is Norvasc am and pm.
OK, do not be concerned about the spasms. May or may not be caught...difficult to catch those. What's important is that they can demonstrate a slow down in the blood flow to the 'end' points of the major vessels that they can see with contrast dye. Your symptoms are what is important and I think your doc is suspicious for clear vessels.....but he needs to prove it, given your symptoms. The MVD is a dysfunction, regardless of the cause and many researchers believe that it is a first indication of heart disease. Emory thinks I'm reacting (spasming) due to the nitric oxide issue. Body not producing this vital element for vaso dilation.
Drug combo is the NIH protocol for testing. If it's a straight cath and angiogram, then it uses contrast medium to view vessels. My first two caths were like that and showed no implication for heart disease in the major coronaries but they could not explain my symptoms...chest pain, SOB and quick spasms-vasospastic angina. You may not have any spasms, just dysfunctional microvessels that won't open enough for a cardiac demand giving you the signs you have and why the doc wants to rule out a blocked or narrowed coronary. I knew he would not start nitro!
If he finds heart disease, then that eliminates you from the MVD strict diagnosis. If he finds no heart disease, then welcome to my world!
If I were you (and I've been there..three times) I'd go for the cath. You need to eliminate heart disease of major vessels. And impress him by asking that he do an ultrasound of the vessels while he's in there. The worse part of the procedure is keeping your leg straight after for hours on your back. They'll suggest sedation and I'd go for it too. I had #1 and #3 without it but as a nurse I had to be all ears listening. With #3 I was fully aware of when they reprouced my symptoms of SOB and chest tightening etc. Get it scheduled. Let me know when. Can I explain something else? It's time to do this. Joan.
Drug combo is the NIH protocol for testing. If it's a straight cath and angiogram, then it uses contrast medium to view vessels. My first two caths were like that and showed no implication for heart disease in the major coronaries but they could not explain my symptoms...chest pain, SOB and quick spasms-vasospastic angina. You may not have any spasms, just dysfunctional microvessels that won't open enough for a cardiac demand giving you the signs you have and why the doc wants to rule out a blocked or narrowed coronary. I knew he would not start nitro!
If he finds heart disease, then that eliminates you from the MVD strict diagnosis. If he finds no heart disease, then welcome to my world!
If I were you (and I've been there..three times) I'd go for the cath. You need to eliminate heart disease of major vessels. And impress him by asking that he do an ultrasound of the vessels while he's in there. The worse part of the procedure is keeping your leg straight after for hours on your back. They'll suggest sedation and I'd go for it too. I had #1 and #3 without it but as a nurse I had to be all ears listening. With #3 I was fully aware of when they reprouced my symptoms of SOB and chest tightening etc. Get it scheduled. Let me know when. Can I explain something else? It's time to do this. Joan.
I am scheduled for May 26. Already had an ultarsound at his office last week. No results yet (at least I don't have them) I don't think he will find any heart disease of major vessels. I would be suprised since ALL my other cardiac testing has been clear. I guess I need to learn something about the nitric oxide issues regarding dilation. Interesting though.This MVD stuff seems to be all about the symptoms and each of us seem to have different combinations of symptoms. Thanks for all your help again.
The ultrasound I referred to was one that is done during the cath procedure. They actually can 'bounce' the sound off the larger coronaries and detect if there is anything suspicious in the artery wall. He'll probably do it; most people are not conversant in asking for that :)
On my private email I'll give you my phone number.I want to to call me after cath ( actually anytime) as I want to keep tabs on how you're doing. You are correct in the varying degrees of this MVD. Most people do well with CCB ,Ranexa, Imdur or nitro and are able to pretty much continue with their normal lifestyle. I hope that you are in the "most" category. Best of Thoughts and Wishes. Joan.
On my private email I'll give you my phone number.I want to to call me after cath ( actually anytime) as I want to keep tabs on how you're doing. You are correct in the varying degrees of this MVD. Most people do well with CCB ,Ranexa, Imdur or nitro and are able to pretty much continue with their normal lifestyle. I hope that you are in the "most" category. Best of Thoughts and Wishes. Joan.
Hi,
I just wanted you to know that during both of my heart caths, I went into spasm. That was good because it showed the doctor that I did have Prinzmetals angina. Also, he told me that I had some of the smallest arteries he had ever seen (explains alot) and that I had blockage in one artery but it was only about 30% and at the intersection with another artery so no stent was put in. I do well on Verapamil, a calcium channel blocker. I hope you get some answers!
Colleen
I just wanted you to know that during both of my heart caths, I went into spasm. That was good because it showed the doctor that I did have Prinzmetals angina. Also, he told me that I had some of the smallest arteries he had ever seen (explains alot) and that I had blockage in one artery but it was only about 30% and at the intersection with another artery so no stent was put in. I do well on Verapamil, a calcium channel blocker. I hope you get some answers!
Colleen
I just realized Joan, that I didn't respond to your sleep study!! Just to prichy. I am glad that you did the study and found out that you were having all those issues! I am assuming this is what you wanted me to read? (from your note). So glad that they found out you have sleep apnea as that can be a very dangerous diagnosis to have w/o knowing about it. I did a home sleep study (pulmonologist wanted me to do it) and it came out fine. That was a couple of months ago. I do have hot flashes but they are hot flashes, lol. No extra heartbeats or anything like that, just the hot feeling. Thanks for the info and Joan, I hope this makes a huge difference in how you feel :)
Hugs,
Colleen
Hugs,
Colleen
Colleen: I wanted you to look at the Pain med.My computer is acting up so I'm sorry for the delay. Joan.
Good morning all. Well tomorrow is the day of my cardiac cath. Not sure if I hope they find something and fix it while they are in there or if it is better that they find nothing. We will see. Guess I have been through every possible test in the 11 months I have had these symptoms which came out of nowhere. I have been thoroughly worked up by my family doctor, a neurologist a gastro doc an ear specialist callled a nuerotologist(because of ear pressure during the spasms which none of them can figure out) and of course my cardiologist. That is head and cervical MRI, 2 EKGs, 1 thalium stress test, one endoscopy, one ear pressure evaluation, cardiac CTA, total fasting blood work up twice, an echocardiagram and a partidge in pear tree!! Everything is clear and within normal limits. And now last but not least a cardiac cath at 4:30 am. Now that is enough to give you a spasm.
OK you got me with the 'partridge ina pear tree"!! very funny. I'll be thinking of you tomorrow and HOPE they find something fixable. The other MVD girl in Ga lives in Powder Springs. She ended up in hospital yesterday and they are ruling out clot. She expects to be home today. Joan.
Powder Springs is definately out ther. Can not believe she ended up in the hospital. Geez how bad can it get???
Don't think about it right now; remember there are various types of MVD. Some are better than others.S is where I was years ago and I hope I can help her learn how to manage this. Her similarity to me with MVD is that she responds well to nitro and needs it, just like I do.Others need the nitro just to keep the vessels open for the specific times that they have spasms..like you. I'll be thinking about you to tomorrow am. Joan.
Hi all
Back from my short (but I must admit pleasant for a hospital) stay at St. Joesphs in Atlanta. Two drug-eluting stents installed due to 90% and a 50% blockage that were right up next to each other distal RCA. New meds No more Norvasc. But added Plavix 75 mg, Coreg 6.25 twice daily, and Lisinopril 2.5 mg. Anybody know anything significant about these meds? I have never been on any of them before. I will return to the cardiologist in two weeks. taking it slow for a few days now. Hope everyone is well. We will see if this takes care of the spasms. As Joan reminded me the other day, I could still have spasms even with the stents as most MVD cannot be checked during the cardiac cath procedure. I guess it is a wait and see for me for now.
Back from my short (but I must admit pleasant for a hospital) stay at St. Joesphs in Atlanta. Two drug-eluting stents installed due to 90% and a 50% blockage that were right up next to each other distal RCA. New meds No more Norvasc. But added Plavix 75 mg, Coreg 6.25 twice daily, and Lisinopril 2.5 mg. Anybody know anything significant about these meds? I have never been on any of them before. I will return to the cardiologist in two weeks. taking it slow for a few days now. Hope everyone is well. We will see if this takes care of the spasms. As Joan reminded me the other day, I could still have spasms even with the stents as most MVD cannot be checked during the cardiac cath procedure. I guess it is a wait and see for me for now.
Let's hope the best for you; no more vasospasms but you are typical of a woman who passed all the tests, still had problems and chest pain and had to pursue cardiac evalulation to get the cath that has helped you avoid a heart attack. We'll keep you in our thoughts. Stay low and keep us informed. Joan.
Thanks Joan. I guess the best I can say is that it took a full year to get to this place. All those previous tests showed nothing till we got to the cardiac cath. As women with chest pain we have to stay focused (and keep the docs focused) on our symptoms. There were things that stayed the same for me and things that changed. It was my job to take things step by step, test by test, appointment by appointment, specialist by specialist until they found the 90% blockage that could have caused me to lose my life at some point. But did not. Don't give up or give in while your symptoms continue.
Crazy way to find out you have sleep apnea! It's difficult to figure out where one diagnosis ends and a different one begins.
I am newly diagnosed with MVD. My symptoms are quite similar to those outlined in Joan's bio. I'm, of course I mean my cardiologist, is still trying to figure all of this out. I live at 9,000ft in the Colorado mountains. I know I feel better the longer I'm in Denver (5200-5300ft) for my various hospital or doctor appts. I also feel better when getting O2 at my hospital/ER visits. Is it possible that O2 would help my symptoms while I'm at home? I have no idea what my O2 sat is at home, seems to be fine while I'm in Denver. This is a question I'm asking of the cardiologist but I don't want to persue it if has been tried and failed in the past.
I am newly diagnosed with MVD. My symptoms are quite similar to those outlined in Joan's bio. I'm, of course I mean my cardiologist, is still trying to figure all of this out. I live at 9,000ft in the Colorado mountains. I know I feel better the longer I'm in Denver (5200-5300ft) for my various hospital or doctor appts. I also feel better when getting O2 at my hospital/ER visits. Is it possible that O2 would help my symptoms while I'm at home? I have no idea what my O2 sat is at home, seems to be fine while I'm in Denver. This is a question I'm asking of the cardiologist but I don't want to persue it if has been tried and failed in the past.
Hi Joan in carolina---please respond to me since I need help. Sharon---I know I must have MVD and am going to Cedars Sinai to see C. Noel Bairy Merz and I live in northeastern Pennsylvania. Please respond
I FOUND "my" JOAN again.Funny I read this post and thought this has to be Joan !!! Guess I'm gearing up for cath #4 this go at EUH/Dr. S. ?? I'll find out more Tuesday at f/u visit with awesome NP-C. My sx. have progressed over the past 6 months..time to see IF things changed. Maybe they will sedate me at
EUH, they did not at Mayo, I'm ready for that !!!
Kim
EUH, they did not at Mayo, I'm ready for that !!!
Kim
Hey Kim, I've always been here! Dr. S will like to do your cath as he has been asking for a year to do my number 4, his number 2 but if he just wants to look, then ok but I said to him that I know he wants to use "those" drugs again and if I get in trouble with a contrast echo, then the answer is no. They are just so curious about my progression as they too know my signs have worsened but how much better treatment can I get in the end? I'll help my ladies out in other ways as I take daily risks as it is now, so not so keen on demonstrating more medical reports to science. Of course they'll sedate you. Remember, they'll want you off some meds and on others as prep so be sure to ask. We are now just outside NY state and I'm catching up with emails.PBS has been great to work with and I got Nell's answers I asked for and hope to get it all in but I really don't know how they are going to present this pain from MVD. Surprise even for me. Hugs, Joan.
Well I had a nice long post and I don't see it now :(
Sammie, pls re-post. Take your time. If you forget, or do not depress the POST button hard enough, your post will be lost.....been there, done that! Hugs
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