This month we attended the Grand Ole Kinosota Opry (think Karaoke with a few professional musicians thrown in doing old country favourites) and we had a great time. I snapped this selfie sitting on my husband’s lap.
Yesterday we made yet another trip to Neepawa where, among other things, we saw the new neurologist. Mostly I came away feeling really positive. The new fellow agreed with all the reductions in medication our own family doctor has implemented. Recall my husband was on five different drugs, three of which were to lower his blood pressure. He was having some very nasty side effects. One drug a generic version of lipitor was in the cocktail even though my husband has no issues with high cholesterol or any other lipid issue. His lipid levels were normal. I’m not sure why this drug was included in the cocktail but for three months my husband suffered terrible leg cramps, especially in his thighs, that would wake him in the middle of the night with pain so bad he would literally scream. We were told to stop that drug as soon as the first neurologist heard about it. While the cramps got better right away, it was another two months before the cramps finally stopped completely.
The two extra blood pressure medications had side effects including sleepiness, swollen ankles, sudden drops where his vision would go black, dizziness, inability to tolerate heat, problems with becoming dehydrated, an inability to tolerate even the most mild exercise beyond slow walking, and “The Wall”. “The Wall” being terrible fatigue that came on without warning and required he immediately going to bed, lie down and sleep. Initially, we assumed that The Wall was purely an effect of the stroke. Now I am not so sure all of it was the stroke. Second to go on the cocktail list was a drug called amlodipene, a calcium channel blocker. First, we reduced it by half for two weeks while monitoring his blood pressure and then we got rid of it completely. For the first couple of days after the drug was reduced/removed my husband got some wonky readings including a couple of weird high ones but they soon settled. There was an immediate and very noticeable improvement in just about every measure of my husband’s alertness, ability to tolerate exercise. Plus “The Wall” rather abruptly vanished.
Third to go was the diuretic, hydrochlorothiazide. Again, the same few days of wonky readings and then the readings not only settled down nicely, in fact, they went lower than before. We are now consistently below 140/80 with the majority readings in under 130/80. And much to everyone’s surprise but mine, so did the swollen ankles. Now hydrochlorothiazide is supposed to prevent swollen ankles by draining away excess water but if you read the fine print the pharmacist gives you, it can actually cause higher blood pressure and swollen ankles in some individuals. Another very nice bonus was issues with our love life vanished. I’ll spare you the details but hydrochlorothiazide is renowned for its ability to turn vigorous healthy men into limp noodles. Some people may prefer their men in that state. I am not among them.
My husband is now back to the single blood pressure medication he has been on for the last twelve years, a drug that was prescribed to him by another metabolic specialist after a lot of tests and (I am most annoyed by this part) a trial of both another calcium channel blocker and hydrochlorothiazide. The first was ineffective and the second proved to make things worse, not better for him. So why did no one listen to me when I complained about adding drugs that we already knew didn’t work? I’m just the stupid wife with a PhD in human genetics specializing in metabolic pathways, so what could I possibly know compared to Almighty Doctor? Can you see my eyes rolling so far back in my head I can see my tenth birthday? My only regret is I caved in and let the doctors push me into putting him on these drugs and it took a lot to finally get someone, namely our family doctor, to actually listen to me and agree to try stopping them in a safe supervised way.
The new neurologist did not talk about putting my husband back on any of those drugs. (Much to my relief as I was ready for a fight.) He did explain why my husband needs the anti platelet drug clopidogrel bisulfate (generic form of Plavix.) As long as my husband has this narrowing of his carotid artery the blood is rushing through like rapids through a chasm. Blood can get caught in eddies and swirls that can cause a clot to form. A clot could trigger another stroke. Now I “get” it. However the new neurologist was also specific that when the pseudoanuerysm heals, we can stop the clopidogrel bisulfate. The neurologist says my husband will need to be on baby aspirin for the rest of his life. We’re both fine with that since he’s been on the baby aspirin since he started the high blood pressure medication and he’s tolerating the clopidogrel bisulfate very well.
The neurologist also agreed with the interventional radiologist that a 5-10% chance of having a stroke or even dying while having the stent put in for someone who has no symptoms, means the stent is a bad idea. He also agreed my husband needs to have an MRI to rule out so called “silent strokes”. Silent strokes are very tiny strokes that have a nasty cumulative effect and eventually can cause dementia. The anti platelet medicine should be preventing these silent strokes from happening. Only an MRI will tell for sure. I explained how the doctors in Brandon had decided he could not have an MRI due to some metal in his leg from a bad break many years ago. The interventional radiologist had told us that was nonsense and the new neurologist agreed. At some point, we will get the appointment to go have an MRI. Given this is now elective, that could take a while with Canadian wait times. The new neurologist asked about homocysteine since that is a key factor in many silent strokes, but the previous neurologist had already ruled out high blood homocysteine levels via the blood tests. It was nice he explained the connection between homocysteine and silent stroke as opposed to saying the equivalent of “It’s normal so don’t worry your pretty little head about it.”
I was also very happy to be able to tell the new neurologist that from our perspective, life has pretty much returned to normal. I came away feeling very positive about the longer term as well because this specialist seems to think that eventually the artery will heal and the sword of Damocles hanging over my husband’s inner carotid artery will eventually be gone. June is when we will reassess and we can do it with ultrasound. For now, we carry on as we have been, living normally.
This entire adventure got me thinking about a very common problem with the way we practice medicine. Polypharmacy is a real and dangerous problem. I’m not sure why my husband was sent home with a cornucopia of fives drugs in a messy cocktail that caused him so much trouble. Maybe he needed all that in the early days post stroke. Maybe it helped his healing and then once the healing was done, it would have been safely stopped eventually even if I had not fussed so much about it. Maybe he was ‘overmedicated” right from the beginning. We’ll never know. My personal feeling is he was given a standard cocktail of post stroke drugs appropriate for someone with multiple risk factors like diabetes, poor lipid profile, and uncontrolled high blood pressure. No one took into consideration that his stroke was not caused by any of these and two of these drugs had already failed in his past history. Rather, his stroke was that typical of a much younger person caused by an accident that tore his inner artery.
My advice is one should never just stop the drugs doctors prescribe. However you should question each and every drug as soon as it is prescribed. If you think past history means the drug is not a good idea, say so and keep saying so until the doctor listens. If the doctor won’t listen, find a new doctor. Don’t take glib explanations for the reason for taking the drug. Do take the time to read all the fine print in those sheets the pharmacists hand out. Know exactly what those side effects are and promptly report them to the doctor. Insist on a serious reconsideration of the drug with an eye to deprescribing as soon as the side effects pop up. Wave the pharmacist’s sheet in front of the doctor if you have to, to make the point. Finally, conditions change and you need to review all the drugs you take with an eye to deprescribing at least once a year and certainly whenever a change in your health happens. Always reduce the number of drugs you are on under the supervision of a doctor you are confident with. NEVER just stop taking them on your own. If your doctor is not listening, find another doctor. Doctors are human beings, not minor deities. No one sues them for over prescribing. They only get sued for under prescribing.
On a final note, to be fair, I have two dear friends with complex health issues who are seeing the first neurologist and they think the world of him. They are convinced he saved their lives and they can’t say enough good things about them. I still think the first one was competent. He just wasn’t the right one for us and part of that was his personality (he’s a ‘pat on the head you need to trust me’ type) and I directly and absolutely butted heads with my (I need to know at least as much as you and strive to learn more than you because it’s my problem) personality type. His refusal to listen to me could well be simply because I got his back up. More than one doctor has said I am a difficult patient, or in this case, a difficult wife.
And so that is our update. We are now feeling “back to normal”. Travel outside of Canada is still out of the question due to insurance issues. We are thinking about some camping trips with our travel trailer to places like the Yukon this summer since we are spending the winter here. Wonder of wonders, I am actually enjoying this winter. I think that is because I don’t have to stand and wait for a bus in the extreme cold. If it’s horrible outside I cocoon inside under my electric blanket. I have also been trying winter sports I never had time for when I was working. I discovered I really like curling. The community has been hosting a whole whack of fun events. The farmers are not as busy in winter and folks get sick of being shut inside so fun things tend to happen. We have been to multiple events including one where we won 15 pounds of pickerel. This year is off to a great start!