So, I'm sorry about the cistern piece. It was really lame and crabby. It's been hard to be funny, even to write about anything that isn't happening right now. Yet, I've been avoiding this subject, the one that's really important to me. See, Mike's been having trouble sleeping. At the doctor the other day, I realized that he can name the day, so now I can name it. He's had trouble since April 20th, when he started taking an antibiotic called azithromax. He thinks there could be a link. The doctors went right over that one, but there are plenty of comments about it on the Internet. Now, when I say Mike's having trouble sleeping, I'm not talking about sleeping five or six hours and slogging to work sleepy. I'm talking about not being able to sleep more than an hour without help from a prescription. And now we have prescriptions in the house that make me nervous to leave laying around.
Mike isn't napping either. Most people who have insomnia can sometimes nap during the day to catch up a little. Long-term sleep deprivation can result in depression, hallucinations, lowered immune system, and even, in extreme situations, death. This doesn't even include the fact that your decision-making abilities are altered with sleep deprivation. Remember that warning not to use dangerous machinery while using certain drugs that affect your ability to make decisions? A car can be dangerous machinery. So these days, I'm just happy when Mike gets home from work.
By now, Mike has three doctors for this problem, an endocrinologist, a sleep specialist, and a psychiatrist. And he's a changed man. I can't tell you how disturbing that is. I don't mind taking up the slack with things that need to be done, but the quiet shuffle of his feet and the way his pants hang slack on his backside bothers me. He doesn't know the answers to questions and he has lost a lot of his sparkle, including that snarky sense of humor that used to drive me nuts. I miss that sense of humor. He has very little appetite. I miss the way he enjoyed the food I made for him, too. He has been extra affectionate, but I think that's just because he really doesn't feel well and he needs me. Many nights, I've slept in the recliner as he's lying on the couch when he can't sleep. It makes him feel better that I'm there with him, even though I'm asleep. I wonder if I'd wake up if he was in trouble. It's a problem that's a lot like what I have when Nickie is having trouble breathing.
Nickie has been worrying about him too. Mike hasn't had the enthusiasm with Nickie or the energy to do what they usually do together. Last night, Nickie couldn't get to sleep because he told me that he'd had a bad thought. He said that he had started to think about what would happen to him if something bad happened to one of us. 'Well, Nickie,' I wanted to say, 'something is happening. No wonder you're worried.' I didn't. I just listened for a minute longer as he talked. Yeah, I actually managed to listen to him instead of talking myself. Amazing. Then I told him that we were doing okay so far and trying to get help for his dad's problem. I couldn't tell him that there was nothing to worry about. I can't lie to Nickie that way. Instead, I sat in the chair in Nick's room as he fell asleep and read my favorite blogs. Have you read the sweet blog by Nat the Fat Rat?
So here's what Mike has done to get help. He started with his regular doctor who did no tests and put him on Ambien. He treated it as a classic case of insomnia and said that Mike's blood tests from last year were fine, so .... Somehow, this doctor missed the fact that Mike was sleeping last year when the blood tests were taken. Mike tried the Ambien, but he said he felt like it was just masking his symptoms. He slept for about five or six hours a night for a couple of weeks until the Ambien abruptly stopped working. Kaput. Nothing.
So then, I managed to get him an appointment with an endocrinologists who didn't require a referral. This doctor really got going, bless her. She took eight vials of blood in a fasting blood draw, scheduled an ultrasound to check his gall bladder and liver, and scheduled a sleep study. She said that problems with the liver can sometimes show up as an inability to sleep. Thankfully, his ultrasound was fine, no liver or gall bladder issues, and his blood work only showed three things: an elevation of LDL cholesterol, the bad one, (no surprise considering Mike's diet), an elevation of cortisol, explaining the lack of sleep, and an elevation of ACTH, a hormone released by the pituitary gland. She told him that the ACTH causes release of cortisol and is usually related to stress. So she prescribed Lorazapam and Effexor and referred him to a psychiatrist. She also said that if it wasn't stress, the problem could be a pituitary tumor. Now, that's going to make it hard to calm down. I think my ACTH levels are rising. Still, I'm glad she was honest with him.
So Mike came home that night and whispered with me in the kitchen while Nickie did his reading. Mike didn't want Nickie to hear the word tumor. I didn't want to hear the word tumor either. I swear, the weeks before any test regarding a tumor are the worst. In my mind, I've been through the whole process before it's happened. You might remember that when I was just a little older than Nick, this same process started with my dad, ending in the worst possible way, except that for my dad, it was colon cancer and not anything near the brain. The test for the pituitary tumor has a glitch: anxiety can cause a false-positive. So they need to get Mike as calm as possible before they do the test. Right. Calm.
The problem with the Effexor the doctor prescribed was that it got Mike going instead of slowing him down. He had jolts of adrenaline, was jittery, and didn't sleep all night. That was an awful Sunday night. The next day, Mike wasn't able to do ordinary things like remember where to put dishes away when unloading the dishwasher. So then, we went to see the sleep doctor. He told Mike that he didn't want to change what the endocrinologist told him to take, but that the Effexor can sometimes have the opposite effect on a person and it looked that way for Mike. He was thorough. I give him that. So, he prescribed Trazodone, a drug that is supposed to help with sleep and anxiety. That night after taking the new drug, Mike's heart rate went up to 112 and he got a really awful case of dizziness. Those were two of the four symptoms the drug notes said to seek medical help for, so we called over the neighbor to hang out with Nickie as he slept. She came quickly and we got to the ER in no time. I kept telling myself to calm down and make rational decisions regarding driving. By the time we got there, the symptoms had subsided, so Mike wouldn't go in. He was embarrassed. Oh, poor guy. I tried to talk him into going, but he just wouldn't, so we went home. After 48 hours, the side-effects of the Trazodone finally went away, but we missed the first night of weekend camping with the Cub Scouts.
Mike spent the next couple of nights on Lorazapam. In the mornings, he almost looked rested and he functioned much better during the days. I asked him why they wouldn't let him stay on that and he said that it has real dependency issues and withdrawal usually includes anxiety that is much worse than what it was prescribed to treat. Shoot!
On Monday, Mike called his endocrinologist and she changed him to Citalopram for anxiety and Lunesta for sleep. The Lunesta has allowed him four to five hours a sleep in the night, but he's still waking up a lot. Yesterday, Mike visited the psychiatrist who, he said, was kind and thorough. He wants to monitor how Mike's doing on the Citalopram and send him to a psychologist for talk therapy and to learn some relaxation techniques. I believe that anyone can benefit from talk therapy, so I hope Mike goes. I'd much rather him have issues with anxiety than a tumor.
Last night was Mike's first night on the Citalopram. At first, he sweated profusely. It was an annoying symptom, but not a deal-breaker. Then Mike said he felt weird, as if he had eaten something that was going to make him sick. His stomach was irritated and he felt weak. He had more anxiety too. I'm wondering if all of this extra anxiety is made worse trying to find a single drug that doesn't have wicked and debilitating side-effects. This morning, he said it was still with him and he felt as though he had to talk his way through what he needed to do next. He's going to call his doctor again. Citalopram may not be the answer either, but the doctor may want him to stick with it for a few more days to see if it evens out. What Mike has to decide is if the side-effects are worth the benefit it offers. We have yet to see any benefits to the anti-anxiety drugs.
In all of this, it feels like Mike's body has become a stew pot into which the doctor's can throw different chemicals to see what happens next. Is any of it helping? I don't know. Mike is getting about four to six hours of interrupted sleep a night on most nights. That's an improvement, but not enough to live on long term. I'm really hoping his sleep study next week reveals something that we can work with.
I'm really hoping that one of these drugs starts to help Mike without disrupting his life with its side-effects. I'm hoping that the doctors stay curious about his problem. There's no doctor better than one who is curious. I'm hoping that the therapist can teach Mike some useful techniques for relaxing and let him talk out his issues. And I'd love to see Mike napping on the couch.
Please keep my dear Mike in your hearts and thank you for listening, jb
Mike isn't napping either. Most people who have insomnia can sometimes nap during the day to catch up a little. Long-term sleep deprivation can result in depression, hallucinations, lowered immune system, and even, in extreme situations, death. This doesn't even include the fact that your decision-making abilities are altered with sleep deprivation. Remember that warning not to use dangerous machinery while using certain drugs that affect your ability to make decisions? A car can be dangerous machinery. So these days, I'm just happy when Mike gets home from work.
By now, Mike has three doctors for this problem, an endocrinologist, a sleep specialist, and a psychiatrist. And he's a changed man. I can't tell you how disturbing that is. I don't mind taking up the slack with things that need to be done, but the quiet shuffle of his feet and the way his pants hang slack on his backside bothers me. He doesn't know the answers to questions and he has lost a lot of his sparkle, including that snarky sense of humor that used to drive me nuts. I miss that sense of humor. He has very little appetite. I miss the way he enjoyed the food I made for him, too. He has been extra affectionate, but I think that's just because he really doesn't feel well and he needs me. Many nights, I've slept in the recliner as he's lying on the couch when he can't sleep. It makes him feel better that I'm there with him, even though I'm asleep. I wonder if I'd wake up if he was in trouble. It's a problem that's a lot like what I have when Nickie is having trouble breathing.
Nickie has been worrying about him too. Mike hasn't had the enthusiasm with Nickie or the energy to do what they usually do together. Last night, Nickie couldn't get to sleep because he told me that he'd had a bad thought. He said that he had started to think about what would happen to him if something bad happened to one of us. 'Well, Nickie,' I wanted to say, 'something is happening. No wonder you're worried.' I didn't. I just listened for a minute longer as he talked. Yeah, I actually managed to listen to him instead of talking myself. Amazing. Then I told him that we were doing okay so far and trying to get help for his dad's problem. I couldn't tell him that there was nothing to worry about. I can't lie to Nickie that way. Instead, I sat in the chair in Nick's room as he fell asleep and read my favorite blogs. Have you read the sweet blog by Nat the Fat Rat?
So here's what Mike has done to get help. He started with his regular doctor who did no tests and put him on Ambien. He treated it as a classic case of insomnia and said that Mike's blood tests from last year were fine, so .... Somehow, this doctor missed the fact that Mike was sleeping last year when the blood tests were taken. Mike tried the Ambien, but he said he felt like it was just masking his symptoms. He slept for about five or six hours a night for a couple of weeks until the Ambien abruptly stopped working. Kaput. Nothing.
So then, I managed to get him an appointment with an endocrinologists who didn't require a referral. This doctor really got going, bless her. She took eight vials of blood in a fasting blood draw, scheduled an ultrasound to check his gall bladder and liver, and scheduled a sleep study. She said that problems with the liver can sometimes show up as an inability to sleep. Thankfully, his ultrasound was fine, no liver or gall bladder issues, and his blood work only showed three things: an elevation of LDL cholesterol, the bad one, (no surprise considering Mike's diet), an elevation of cortisol, explaining the lack of sleep, and an elevation of ACTH, a hormone released by the pituitary gland. She told him that the ACTH causes release of cortisol and is usually related to stress. So she prescribed Lorazapam and Effexor and referred him to a psychiatrist. She also said that if it wasn't stress, the problem could be a pituitary tumor. Now, that's going to make it hard to calm down. I think my ACTH levels are rising. Still, I'm glad she was honest with him.
So Mike came home that night and whispered with me in the kitchen while Nickie did his reading. Mike didn't want Nickie to hear the word tumor. I didn't want to hear the word tumor either. I swear, the weeks before any test regarding a tumor are the worst. In my mind, I've been through the whole process before it's happened. You might remember that when I was just a little older than Nick, this same process started with my dad, ending in the worst possible way, except that for my dad, it was colon cancer and not anything near the brain. The test for the pituitary tumor has a glitch: anxiety can cause a false-positive. So they need to get Mike as calm as possible before they do the test. Right. Calm.
The problem with the Effexor the doctor prescribed was that it got Mike going instead of slowing him down. He had jolts of adrenaline, was jittery, and didn't sleep all night. That was an awful Sunday night. The next day, Mike wasn't able to do ordinary things like remember where to put dishes away when unloading the dishwasher. So then, we went to see the sleep doctor. He told Mike that he didn't want to change what the endocrinologist told him to take, but that the Effexor can sometimes have the opposite effect on a person and it looked that way for Mike. He was thorough. I give him that. So, he prescribed Trazodone, a drug that is supposed to help with sleep and anxiety. That night after taking the new drug, Mike's heart rate went up to 112 and he got a really awful case of dizziness. Those were two of the four symptoms the drug notes said to seek medical help for, so we called over the neighbor to hang out with Nickie as he slept. She came quickly and we got to the ER in no time. I kept telling myself to calm down and make rational decisions regarding driving. By the time we got there, the symptoms had subsided, so Mike wouldn't go in. He was embarrassed. Oh, poor guy. I tried to talk him into going, but he just wouldn't, so we went home. After 48 hours, the side-effects of the Trazodone finally went away, but we missed the first night of weekend camping with the Cub Scouts.
Mike spent the next couple of nights on Lorazapam. In the mornings, he almost looked rested and he functioned much better during the days. I asked him why they wouldn't let him stay on that and he said that it has real dependency issues and withdrawal usually includes anxiety that is much worse than what it was prescribed to treat. Shoot!
On Monday, Mike called his endocrinologist and she changed him to Citalopram for anxiety and Lunesta for sleep. The Lunesta has allowed him four to five hours a sleep in the night, but he's still waking up a lot. Yesterday, Mike visited the psychiatrist who, he said, was kind and thorough. He wants to monitor how Mike's doing on the Citalopram and send him to a psychologist for talk therapy and to learn some relaxation techniques. I believe that anyone can benefit from talk therapy, so I hope Mike goes. I'd much rather him have issues with anxiety than a tumor.
Last night was Mike's first night on the Citalopram. At first, he sweated profusely. It was an annoying symptom, but not a deal-breaker. Then Mike said he felt weird, as if he had eaten something that was going to make him sick. His stomach was irritated and he felt weak. He had more anxiety too. I'm wondering if all of this extra anxiety is made worse trying to find a single drug that doesn't have wicked and debilitating side-effects. This morning, he said it was still with him and he felt as though he had to talk his way through what he needed to do next. He's going to call his doctor again. Citalopram may not be the answer either, but the doctor may want him to stick with it for a few more days to see if it evens out. What Mike has to decide is if the side-effects are worth the benefit it offers. We have yet to see any benefits to the anti-anxiety drugs.
In all of this, it feels like Mike's body has become a stew pot into which the doctor's can throw different chemicals to see what happens next. Is any of it helping? I don't know. Mike is getting about four to six hours of interrupted sleep a night on most nights. That's an improvement, but not enough to live on long term. I'm really hoping his sleep study next week reveals something that we can work with.
I'm really hoping that one of these drugs starts to help Mike without disrupting his life with its side-effects. I'm hoping that the doctors stay curious about his problem. There's no doctor better than one who is curious. I'm hoping that the therapist can teach Mike some useful techniques for relaxing and let him talk out his issues. And I'd love to see Mike napping on the couch.
Please keep my dear Mike in your hearts and thank you for listening, jb
No comments:
Post a Comment