Sam's Story, The Magical Medical Mystery Tour: Part II

March 5th, 2008

Since July of 2004, I have continued to be seizure-free, but there is some concern about my short-term memory. My neurologist tells me I need some neuropsychological testing. Before I agree, I consult with several other doctors - do I really need more tests?

Only one of the doctors takes the time to explain the proposed testing. He says it's called "cognitive mapping," and that it will take about ten hours. It will show how my brain is functioning. So I agree to the testing and, indeed, it shows some short-term memory lapses. The doctor who has interpreted the data thinks it's only temporary (static in nature) and that I should do the test again in twelve to eighteen months.

In January of 2005 my neurologist adds another anti-seizure medication to my existing medication. This one has the added benefit of helping with anxiety. Later on in March, I begin having trouble with the combination of both medications. It makes me feel stupid, as though it's fogging my brain. The doctor immediately orders discontinuing the second medication. In April 2005, I go to the hospital for a two-hour sleep deprived EEG. Because the testing area was so noisy, I couldn't sleep. The technician was annoyed by my inability to sleep, as was I. At this point, the doctor gives me two options, one, redo the two-hour EEG in a new environment or do the twenty-four hour in-hospital EEG. I went for the twenty-four hour EEG, which was not a particularly pleasant experience. The results are "normal", the doctor tells me I will have to use the CPAP for the rest of my life and tells me to phase off the anti-seizure medication in three weeks. I question the timing , my thought is that it should be more gradual. One week off of the medication, I have a nocturnal seizure. My doctor abruptly says "See, I told you it was epilepsy all along", and I am distraught.

I decide to find another neurologist. A friend suggests I see a neurologist who also specializes in sleep disorders. My new doctor reviews not just the last but the previous EEG as well. He is polite, but not impressed with the tests that have been done to date. He also reviews my case with a team of post-doctoral fellows from many different fields, so that he can gather as much information from as many different disciplines of sleep medicine as possible. I am very pleased with the multi-disciplinary approach to my sleep disorder.

The result is that he recommends that I stop taking the prescription sleep medication and focus my attention on "sleep hygiene" instead. One of the things he suggests that I try is "sleep restriction therapy", that is, after fifteen minutes of tossing and turning, one should get out of bed and engage in a quiet soothing activity, such as reading a book or listening to calming music, then proceed to bed when you are sleepy.

In December 2005, I switch from CPAP at eleven centimeters to Auto-PAP at a range of five centimeters to twelve centimeters. I immediately find this a lot more comfortable,and I no longer have bloating in the morning. For the most part, during all of 2006, I continue using Auto-PAP and taking my medication religiously.

In January 2007, the neuropsychological testing is redone. Looking this time primarily at my memory functioning. The testing shows my memory has improved and that my overall cognition has improved as well.

In May 2007, the doctor suggests a follow-up titration study be done, and that goes very badly. During the night, I have a panic attack that feels like a seizure. Because of my extreme anxiety, the test turns out to have very little value. In order to redo the test and get better results, I consult a clinical hypno-therapist. He teaches me techniques to put past negative experiences behind me and to relax during the sleep study. My primary care physician prescribes an anti-anxiety medication to be used as needed. Two weeks before the study, I listen to a custom made CD at bedtime to help me relax. The night of the study I use the CD as well as the medication. I redo the study, but this time I have a sleep tech with experience in working with seizure and sleep disorder patients. I complete the study without difficulty. The findings are that I need to increase my pressure range to seven centimeters to seventeen centimeters with an ideal pressure of fourteen centimeters.

As I write this, I am two and a half years seizure-free. I have learned (sometimes painfully) that determination and discipline are equally important in this process. I know now that I must be vigilant about using my Auto-PAP and about taking my medications on schedule. I must maintain my weight loss of thirty pounds (I probably should lose ten more). I must be pro-active about my health - there is no safe way for me to be passive-- not with doctors and their diagnoses, or with the things I know I have to do to be well.

It's my choice.

So far, this has been "a long and winding road," a kind of magical, mystical, medical tour, but it's one with many gifts as well as challenges. I have learned to recognize the importance of assembling a health care team made up of people who are not only trained well in the field, but who are able and willing to communicate with me and my wife. Good doctors take the time to explain things clearly because they care personally about their patients. Also among my "gifts" is the realization that my research and subsequent learning about sleep disorders has given me knowledge on which I can confidently act. My choices are better because I know more. I know that when all is said and done, I am the ultimate decision maker. The work is hard, but well worth it.

I have never felt so good.

Read Sam's Story Part 1 here.