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cholesterol frustration


I'm frustrated about health problems. At this point I'm going entirely on what I feel God leading me to do, and for the most part I'm confident in that. I'm not so confident when I have to deal with a yelling doctor who considers me noncompliant and has to fill out forms saying I'm healthy--it's very clear he believes I am not.




First some background on me... I have both migraines and asthma, and for a long time I have felt that there was a link between them since I routinely had asthma attacks followed by migraines. I also had chronic respiratory illness and allergies. I also have had two cornea transplants which means I was on immunosuppressants for four years. In fact, when I moved here in October 2002, I was taking a total of 13 medications for all these various things--and I still was sick a lot.



When I moved here, I was working as an independent contractor and I went several months without insurance. After a trip to the ER with bronchitis/pneumonia in December, 2002, I decided that I needed to start experimenting because anything was better than paying $500 or more for meds--or going totally without. I started reading up on alternative medicine and experimenting with herbs, essential oils (in a diffuser), andnutritional supplements. To make a long story very short, I have not needed an inhaler since January, 2003, even after vigorous exercise. I have no allergic symptoms, have not had bronchitis since that trip to the ER, and have marked improvement in migraine symptoms. I am fairly confident that much of my problem is metabolic something, and I suspect that it runs on my mom's side of the family. They all have very similar symptoms.



Ok, now to the big stuff. My mom's side of the family also has a history of mitral valve prolapse. I've been checked a couple of times, but I have no heart problems. However, Dr. B. decided upon my first visit to him in August 2003 to check my cholesterol. He did not tell me he was doing it and didn't discuss the possibility that there could even be a problem. I just got a call on a Saturday morning from his nurse telling me, "He wants you on Lipitor 80 mg/day." Well, because I tend to be med-sensitive and achieve therapeutic levels at very low doses, I told her I wanted to look up some info before starting it. When I looked it up, I got furious. A lot of the side effects are things I experienced already during the initial phases of my migraines. (atypical? or basilar? An unsolved puzzle and one I'll probably never have the answer to. Currently my dx says atypical.) So I wasn't anxious to get on a med that could aggravate the symptoms, especially when I read that 80 mg is the max dose and the medication is only supposed to be used after diet has been tried. Keep in mind that no one had ever discussed cholesterol, so I had no idea that I needed to be on a cholesterol-lowering diet or even what that would involve. So I called back and said that I'd like to try diet first, hoping he would give me some direction. The nurse started going on about how they wouldn't be responsible if I had a stroke, etc. I don't like intimidation tactics, especially from medical professionals who don't care about my real quality of life.



Later it occurred to me that I didn't even know my numbers. So I called to find out. my total was 290. My LDL was 213, and he wants it under 100. So I agreed to go in and discuss it with him. The first thing he said was "You refused the medication." I told him I wouldn't take 80 mg/day but if he wanted to discuss a lower dose I would consider it (reluctantly). He said, "I didn't have you on 80 mg/day." Well, that's what the nurse told me--and guess what instructions I would have followed! He wanted me on 80 mg every other day. So I told him I would take 40 mg/day but not 80 at once. I took several weeks to get up the nerve to pick up the prescription, but I finally did it the week before Thanksgiving. And thus begun the week from hell.



I experienced mood instability like I haven't experienced since 1999. I was dizzy constantly, to the point that I could not climb stairs independently. I had a lot of muscle pain and weakness, impaired memory, and slurred speech. Part of the time I thought I was heading toward a migraine, but the pain phase didn't come until after I discontinued the Lipitor. After about ten days on it, I decided that I didn't want to live a long time if the price was this kind of quality of life. I called the doctor back, and he said to stop taking it. It took another five days for the symptoms to clear up. The migraine pain lasted for almost 48 hours. I don't ever want to go through that again!



When I went in to talk about other options, he refused to discuss nutritional supplements with me--even Nyacin, which I've read enough to know is a widely used treatment for high cholesterol. He started yelling (literally) about how people think they can just take supplements because they're natural but they're really untested "and 50 million people can take Lipitor.) He went on for a long time and told me that if I wanted to lower it safely I would have to take Lipitor. Oh, he did ask how I was doing with the diet--you know, the one he never discussed with me. He talked about the risk of stroke... But to be honest, that doesn't intimidate me like it should because I already know I am at risk of stroke because of the raretype of migraines I have--and I have symptoms of stroke every time I have a migraine.



So I've been doing things on my own because that seems to be the only way I can honor my own self in this. Maybe I'm using untested substances, but to me it doesn't matter how many other people take Lipitor safely. I'm not them. I take child's dosages of meds because they're almost too strong for me, and over the last year I've developed a good track record of responding well to supplements and other "untested" interventions. I'm not having any adverse effects from anything I'm taking, and in fact I'm continuing to improve and stay fairly stable as long as I keep doing what I'm doing. ... I had begun the process of adopting a child with special needs, and I had to stop it because I knew that if I was taking Lipitor I would not have the physical ability or presence of mind to be a responsible or capable or patient parent. I would not be able to care for a child or provide any kind of emotional stability, and that kind of stuff really matters to me. My doctor is throwing around the words "life-threatening" amidst his tirade, and what I really want to know is how seriously I need to take that. I have no idea how long this has been a problem, and since it has never been tested before now I don't know that maybe it wasn't a lot higher in the past--I've discovered that some of the supplements I was already taking have been used for lowering cholesterol. I don't want to completely blow it off, but I also don't want to live in fear. If I really do have a serious life-threatening problem, I cannot resume the adoption process unless and until it is under control. If that's the case, then I want to do everything I possibly can to get it under control so I can start living...

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3kitties
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Sarah Blake LaRose
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