DISCLAIMER: What I am about to write is not an indictment of doctors
or the medical profession. It is a complicated issue to which I do not
have an answer.
Earlier today, I wrote a blog talking about my apnea, the sleeping
pill I've been taking, and side effects it caused. It was simple for me
to determine it was the sleeping pill, because I only take one other
medication and I've been taking it for close to 20 years with no side
effects. It was a case where the healthcare system and the patient were able are work together to solve a problem. Unfortunately, it doesn't always work that way. That seems to be the case with my wife's medical problems, which are more complicated than mine.
Earlier this year, she passed out while shopping. Thus begun a long and yet unfinished quest to determine the cause. It has been a parade of specialists, EKGs, Ultrasounds, EEGs, stress tests, blood tests, and endless forms. In each case she listed all her medications and all her symptoms.
She takes a total of seven prescription medications and two over the counter products. These have been prescribed to her by a series of doctors over the years. Because many of her symptoms have come on gradually they have been attributed to the gradual aging process. Right now, her major symptoms are headaches, dizziness, and constipation. She also has joint pain and drowsiness, both of which I've noticed have increased in severity.
They haven't manifested themselves over night and are the kind of things that don't set off alarms. The passing out was the alarm. While her doctors are looking for a physical cause for her symptoms, my non-expert opinion is that they are the cumulative result of drug side effects and interactions. While doctors may point to the fact that the list of side effects on drugs is long and people don't display the vast majority of those listed, I don't think nearly enough attention is given to these effects one the alarm has been sounded.
Consider these facts:
5 of her medications list headache as a side effect. She says if she can go three days without a headache she considers it a good week. Headaches were one of the symptoms of the sleeping pill I was taking. Prior to taking it, I had a total of about three headaches in 20 years.
6 of her medications list constipation as a side effect. She takes a laxative about once a week. If I don't count the time I was cutting weight for wrestling in high school and college. If I averaged one laxative a year for the past 45 years, that is a lot.
3 of her medications list insomnia as side effect, yet she is taking a sleeping pill for insomnia and of course that pills lists dizziness and drowsiness as possible side effects.
She also has other symptoms whose side effects are listed for 2-3 other of the medications.
She is being treated for high blood pressure, high cholesterol, osteoporosis, hypothyroidism, insomnia, and an irregular heartbeat, all of which are serious conditions in the long or short term. They are certainly of more concern than any of the individual side effects. However, if the cumulative side effect over time result in fainting and falls, the results can be very serious.
In my mind her symptoms are a result of one or more of these medications. That most obvious conclusion which is not being addressed. It is much more expedient, profitable, and safe to look for a physical cause through a long and expensive series of tests and specialists.
As a scientist, I know the most likely hypothesis is the side effects of the drugs, but the only way to determine that is to devise a series of controlled withdrawals and to observe the results. Through no fault of the doctors, that option is actually the least feasible. In today's litigious society dominated by for profit drug and medical companies that course of action doesn't add to the bottom line and could result in law suits.
With one visit per year to your primary care provider, there is no way they can devote the time and resources necessary to run the controlled study necessary to eliminate the side effects ANY treat the more serious issues for which medications are prescribed. I understand that.
I know if they were to take the systematic approach to determining if side effects were responsible for her fainting and she were to die of a brain tumor or heart attack, one very well might expect a law suit. So what is the solution?
It certainly isn't simple, but in this case I think one more specialist will eliminate all of the obvious reasons for her fainting. Assuming Gregory House is not going to be on the case, I will be bringing what I have written to the attention of her primary care physician this week, in the hopes that we can develop a plan to determine if side effects are responsible for her most serious symptoms of fainting and sudden dizziness. If we can do that, we can begin going after the headaches next.
Saturday, November 7, 2015
Apnea, Symptoms, Drug Side Effects, and Quality of Life
This may be a bit too long for the average reader, but if you have or think you have sleep apnea, it may be worth the effort.
About three years ago, I underwent a sleep study to determine if I had apnea. I posted a video and a blog entry about getting wired-up for the night, and said I would follow up in about a week. As a charter member of the Procrastinators Club, I'm just now getting around to that update. Actually, I have written about it on Facebook, but not here.
I was diagnosed with mild apnea and active legs. I thought I woke up about three times during the night, but the electrodes indicated that it was MUCH more than that and my legs were so active I think I ran a marathon.
The Dr. prescribed a CPAP machine (continuous positive airway pressure). It's basically the same kind of device I used during the study, minus all the wires and additional probes. I knew that I would not like it. Who would? Wearing a mask over your nose and mouth, and being harnessed to a machine constantly pumping air in your face is not exactly my idea of a fun night, but I decided to give it a try.
I joined a sleep apnea online forum and learned a great deal about the condition and the machine. Being a geek, I also downloaded the software that allowed be do examine the DETAILED data recorded on the SD card in the machine. As a result, I realized that while the Dr. knew much more about apnea, I knew more about the machine. It's important to note that this was a conclusion arrived at mutually over the coming year.
The initial settings used on the machine are a "guesstimate" based upon the test results and the common practice of erring on the safe side, a sad side effect of our litigious society. The Dr. started with a pressure setting of 11.
The machine records all the activity it can without additional probes used during the study. One of the important measures is the AHI index, a tracking of breathing "events". Anything under 10 is acceptable, but they like it to be 5 or less. I was averaging about 8, but I was having difficulty getting to sleep and had to take a sleeping pill each night.
The readings were ok with the Dr., but I knew this would not be a long term solution for me. I wasn't happy with how it was effecting my sleep and began experimenting with the pressure settings on the CPAP machine. Over the next few weeks, I gradually lowered the pressure settings from 11 to 9. I was happy to see that my AHI gradually dropped to about 5.
At the next visit, I discussed what I had done with the Dr. It was then I found out that I knew much more about the workings of the machine than she did. Because only the sleep technician normally makes changes to the machine, it would have taken multiple additional visits to do what I had done.
I realized there were serious flaws in the medical system. The Dr. was happy with the average AHI of 5, but I was not. I was still having trouble getting to sleep and still taking pills. I continued to experiment and eventually worked my way down to a pressure setting of 4, which is the lowest setting the machine would accept. Considering my visits started about 3 months apart and are now down to once a year, what I did myself in a few weeks would probably still be an ongoing process.
The good news is that since I started, I heard there are machines that are Internet ready, can monitor and report back to the Dr., and they can make adjustments accordingly. However, it's not the typical situation.
My AHI had also dropped to an average of about 2 and I went off the sleeping pills, additional good news for me. The bad news is that I would always wake up about 3-4 hours later. However, that was normal. Even before the CPAP, I would wake up at least once a night to urinate, which was what was happening now. The problem is, I could not get back to sleep after that unless I discarded the CPAP, which I got into the habit of doing. I was only getting about 4 hours of CPAP sleep a night, which is the minimum they want to see.
During this time, I had also changed my diet and began going to the gym regularly. I lost about 15 pounds and was in good shape. When we would go on trips, I would not take the CPAP and my wife noticed that I was no longer snoring. Prior to that she suffered from my snorts and I suffered from her elbows and pillow blows. This led me to wonder if my mild apnea had improved to the point where I might not need the CPAP.
I emailed the Dr. with my questions. About 6 months ago she set up home study which involves wearing a monitor which straps to your chest and a finger probe to measure breathing events the CPAP does not, along with oxygen levels.
The results indicated a significant improvement, but I was still having periods where I stopped breathing. She recommended I continue using the CPAP. I've been following her advice, but have been unhappy with wearing it and went back on the sleeping pills, which brings me to the side effects and quality of life part of this blog.
I'm 71 years old and aside from the sleeping pill, the only medication I take is for my thyroid. I have the normal aches and pains one would expect as one gets up in years. Considering my wresting career in high school, college, and coaching with it's numerous associated injuries, I felt I was doing pretty well, until this week.
I've never been one to pay much attention to the side effects of medications, but recently I began researching the various sleep meds I've taken over the two years. (We've tried 3 different meds.) I noticed that they all had some side effects in common. I've also come to the conclusion that MANY people have side effects without realizing it. That was certainly the case with me.
I searched my memory and did some experimentation and observation of my body both off and on the pill and realized that while mild, I was experiencing at least three side effects, namely drowsiness, headache, and constipation. I fully expected the drowsiness, but never really noticed the other two, because neither was serious.
The headaches didn't even require aspirin and the constipation didn't require laxatives, but for me both were significant. Prior to taking the sleeping pills, you could count on one hand the number of headaches I've had in the last twenty year and except for when I was cutting weight for wrestling, I never had a constipation problem.
This is leading me to re-evaluate you use of the CPAP. I've always said I want to live to be at least 100. Do I want to spend the next 30 years strapped to a machine or suffering side effects. That negatively effects my quality of life. If don't deal with my mild apnea, it could shorten my life a few years. So what should I do?
I've come to the decision to go off the CPAP, but I'm not ready to give up those few years, because I do have two other options, only one of which I feel is acceptable. There is a dental appliance that the Dr. will gladly prescribe as an alternative. It would be a custom fitted mouthpiece that is designed to hold the lower jaw forward as I sleep, thus opening the airway and minimizing breathing problems caused by relaxed muscles. The other is surgery, which I haven't even discussed with her and I don't think I would want to under go.
I'm going to give the Dr. a call to set up and appointment with a dentist who specializes in making the mouthpieces and give that a try. I'll report back here on the results. Hopefully, it won't be two years from now.
About three years ago, I underwent a sleep study to determine if I had apnea. I posted a video and a blog entry about getting wired-up for the night, and said I would follow up in about a week. As a charter member of the Procrastinators Club, I'm just now getting around to that update. Actually, I have written about it on Facebook, but not here.
I was diagnosed with mild apnea and active legs. I thought I woke up about three times during the night, but the electrodes indicated that it was MUCH more than that and my legs were so active I think I ran a marathon.
The Dr. prescribed a CPAP machine (continuous positive airway pressure). It's basically the same kind of device I used during the study, minus all the wires and additional probes. I knew that I would not like it. Who would? Wearing a mask over your nose and mouth, and being harnessed to a machine constantly pumping air in your face is not exactly my idea of a fun night, but I decided to give it a try.
I joined a sleep apnea online forum and learned a great deal about the condition and the machine. Being a geek, I also downloaded the software that allowed be do examine the DETAILED data recorded on the SD card in the machine. As a result, I realized that while the Dr. knew much more about apnea, I knew more about the machine. It's important to note that this was a conclusion arrived at mutually over the coming year.
The initial settings used on the machine are a "guesstimate" based upon the test results and the common practice of erring on the safe side, a sad side effect of our litigious society. The Dr. started with a pressure setting of 11.
The machine records all the activity it can without additional probes used during the study. One of the important measures is the AHI index, a tracking of breathing "events". Anything under 10 is acceptable, but they like it to be 5 or less. I was averaging about 8, but I was having difficulty getting to sleep and had to take a sleeping pill each night.
The readings were ok with the Dr., but I knew this would not be a long term solution for me. I wasn't happy with how it was effecting my sleep and began experimenting with the pressure settings on the CPAP machine. Over the next few weeks, I gradually lowered the pressure settings from 11 to 9. I was happy to see that my AHI gradually dropped to about 5.
At the next visit, I discussed what I had done with the Dr. It was then I found out that I knew much more about the workings of the machine than she did. Because only the sleep technician normally makes changes to the machine, it would have taken multiple additional visits to do what I had done.
I realized there were serious flaws in the medical system. The Dr. was happy with the average AHI of 5, but I was not. I was still having trouble getting to sleep and still taking pills. I continued to experiment and eventually worked my way down to a pressure setting of 4, which is the lowest setting the machine would accept. Considering my visits started about 3 months apart and are now down to once a year, what I did myself in a few weeks would probably still be an ongoing process.
The good news is that since I started, I heard there are machines that are Internet ready, can monitor and report back to the Dr., and they can make adjustments accordingly. However, it's not the typical situation.
My AHI had also dropped to an average of about 2 and I went off the sleeping pills, additional good news for me. The bad news is that I would always wake up about 3-4 hours later. However, that was normal. Even before the CPAP, I would wake up at least once a night to urinate, which was what was happening now. The problem is, I could not get back to sleep after that unless I discarded the CPAP, which I got into the habit of doing. I was only getting about 4 hours of CPAP sleep a night, which is the minimum they want to see.
During this time, I had also changed my diet and began going to the gym regularly. I lost about 15 pounds and was in good shape. When we would go on trips, I would not take the CPAP and my wife noticed that I was no longer snoring. Prior to that she suffered from my snorts and I suffered from her elbows and pillow blows. This led me to wonder if my mild apnea had improved to the point where I might not need the CPAP.
I emailed the Dr. with my questions. About 6 months ago she set up home study which involves wearing a monitor which straps to your chest and a finger probe to measure breathing events the CPAP does not, along with oxygen levels.
The results indicated a significant improvement, but I was still having periods where I stopped breathing. She recommended I continue using the CPAP. I've been following her advice, but have been unhappy with wearing it and went back on the sleeping pills, which brings me to the side effects and quality of life part of this blog.
I'm 71 years old and aside from the sleeping pill, the only medication I take is for my thyroid. I have the normal aches and pains one would expect as one gets up in years. Considering my wresting career in high school, college, and coaching with it's numerous associated injuries, I felt I was doing pretty well, until this week.
I've never been one to pay much attention to the side effects of medications, but recently I began researching the various sleep meds I've taken over the two years. (We've tried 3 different meds.) I noticed that they all had some side effects in common. I've also come to the conclusion that MANY people have side effects without realizing it. That was certainly the case with me.
I searched my memory and did some experimentation and observation of my body both off and on the pill and realized that while mild, I was experiencing at least three side effects, namely drowsiness, headache, and constipation. I fully expected the drowsiness, but never really noticed the other two, because neither was serious.
The headaches didn't even require aspirin and the constipation didn't require laxatives, but for me both were significant. Prior to taking the sleeping pills, you could count on one hand the number of headaches I've had in the last twenty year and except for when I was cutting weight for wrestling, I never had a constipation problem.
This is leading me to re-evaluate you use of the CPAP. I've always said I want to live to be at least 100. Do I want to spend the next 30 years strapped to a machine or suffering side effects. That negatively effects my quality of life. If don't deal with my mild apnea, it could shorten my life a few years. So what should I do?
I've come to the decision to go off the CPAP, but I'm not ready to give up those few years, because I do have two other options, only one of which I feel is acceptable. There is a dental appliance that the Dr. will gladly prescribe as an alternative. It would be a custom fitted mouthpiece that is designed to hold the lower jaw forward as I sleep, thus opening the airway and minimizing breathing problems caused by relaxed muscles. The other is surgery, which I haven't even discussed with her and I don't think I would want to under go.
I'm going to give the Dr. a call to set up and appointment with a dentist who specializes in making the mouthpieces and give that a try. I'll report back here on the results. Hopefully, it won't be two years from now.
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