We had a scare with Mom a couple of weeks ago when her blood pressure went way high (200ish/100ish), and she experienced numbness from her face down her neck and her left arm. She spent the night in an ER observation room and stayed stable, and after all test results came back normal, they discharged her the next day. She saw a neurologist a few days later who wanted her on Lipitor for her high LDL. She's had high cholesterol levels for years despite watching what she eats and has resisted taking any meds for it ever since Dad was on them.
About a dozen years ago, his cholesterol levels were high, so his GP put him on a statin drug. Not long after, he began feeling tired and weak and had problems remember stuff. We were living out of the Houston area at the time, but I could tell a difference talking with him on the phone--not as much as Mom saw with him all the time, but still a difference. I knew little about the drug but kept telling her it was the drug since he was fine before he started taking it and this all began afterward. She said the doctor was running tests and all the levels came back within the normal range.
As he continued to worsen and the GP didn't change anything, Mom and Dad were getting frustrated (and I was still insisting he should get off the drug to see what happened), the GP finally recommended seeing a neurologist. He examined Dad, checked tests, ran others and said that yes, indeed, the statin drug could cause Dad's symptoms. It might not be, but it was certainly easy enough to stop the drug and see what happened. If Dad improved, we had the answer. If not, we'd look for another cause. He also recommended taking CoQ10 to get those levels where they should be.
Well, before long, daughter Meggie talked to Dad on the phone and told me, "Grandpa sounds like himself!" It took a few weeks, but he really did return to pretty much his old self: not tiring easily, able to do regular work again and remembering as he always had. We were pleased and relieved.
The GP might have been pleased with that, but he was not pleased with Dad's still-elevated cholesterol levels and put him on a different medicine, one that works in the small intestine instead. Once again, not long after beginning that medicine, Dad started having weakness, fatigue and memory loss. Long-term memory was fine. Short-term was not. Liver panel and other tests again showed everything was fine despite what he was experiencing.
This time Dad got off the medicine relatively quickly. This time it made no difference. Neither did CoQ10 nor anything else he tried.
Searching the Internet was still pretty new at that point, but I started looking for answers, both for what had happened and what we could do. Medical professionals and drug companies stated that reported incidents of memory loss after taking cholesterol-lowering drugs were just anecdotes and coincidence. No study had shown a connection.
Then, I found a former NASA flight surgeon who had experienced short-term amnesia after being on a statin drug. He had begun investigating cases and causes. Many others had reported similar experiences, like the woman who had called the sheriff, insisting an intruder had been in her home--she found footprints outside in the snow and someone had eaten part of her sandwich. The sheriff found that the footprints matched her snow boots, and as they talked, he figured out that she had been eating lunch, gone outside for something, come back in and forgotten what she had been doing as well as going outside for whatever reason. She had been on statin drugs. He didn't have as many reports of the memory loss Dad was experiencing (it was short-term memory loss but not like amnesia), but he had some.
The doctor had been researching and reported that the body needs a certain amount of cholesterol for the body--including the brain--to function properly. No one (at least then) knew how much was needed, and it appeared that it varies for individuals. Lowering cholesterol levels to what doctors recommended might be too low for some people and result in fatigue, muscle weakness, and, yes, memory problems.
I know some still say the drugs and memory loss are not connected. (I'm not going to argue with you since not everyone who takes the drugs develops dementia, and not everyone who has dementia has taken the drugs.) I also know that Dad's memory not only did not return to what it had been, but it kept getting worse, and he was finally diagnosed with early-onset dementia, one of many forms of dementia. He was in his early 60s.
I keep an eye on developments about cholesterol levels and medicines and interactions. Although most in the medical and pharmaceutical fields still insist there's no connection, more now are at least saying there could be a connection, and some state there is a connection. It's frustrating, especially when a friend in the pharmaceutical field told me that despite what the tests showed, the GP should have pulled Dad off the drugs immediately based on the symptoms he was having.
It is what it is, though. We are on this road, which most recently has had more declines for him. What's good, though, is I have learned that we are not alone on it, and the people who are coming alongside and the resources available through many sources, including the Alzheimer's Association (http://www.alz.org/ is the main site, with local sites also), will make it more bearable. I hope those reading my blog are not on a similar road, but if you are, come along with me. We'll make it together.
