After a good night's sleep, we got hopeful. It was followed by Sunday night, which was basically a return to sleeplessness. Tim was in bed by 11, up shortly after midnight. He stayed awake for most of the night. About 4ish, he came to bed.
I called the neurologist's office this morning. They asked what we had tried so far. I listed it out. Explained about the caffeine, which I guess was a fluke. Told them how concerned I was. When Tim gets tired, his voice slurs and it is evident that, cognitively speaking, something is off.
She told me that it would be passed on, and the call came back this afternoon. "Call your primary care provider."
And so I did. And they said, "Our next available appointment is March 21st."
I know it is not anyone's fault, but I'm afraid of what is happening here. I need some advice on how to turn it around. I don't know that we can or should wait until March 21st. I stressed that to the receptionist. "I am not trying to be difficult here, but my husband had a stroke a month ago, and this is a life changing event. I want the best outcome for him, and I feel like I'm foundering about on my own here."
"Call his cardiologist," she suggested.
"He doesn't have a cardiologist," I told her.
"Who ordered the Holter Monitor then?" she wanted to know.
"The neurologist. I've already tried to get some advice there and they directed me to call you."
Long story short, she was sympathetic and we've got an appointment March 21st at 2. I still don't know what we should do (or not do). I am reading and we are totally winging it, here.
Tim doesn't drink beer, but he bought himself a six pack tonight and cracked one open. We're getting desperate here.
Hi Debby, My husband had a stroke a couple of years ago. He had a follow up with a neurologist that did a comprehensive follow up. Is there anyway you could get him seen by a neurologist? Sending you and your husband positive, healing wishes and prayers. Cali G
ReplyDeleteI called his neurologist first. The call back came in the afternoon, referring us to our primary care provider.
DeletePatience needed...but it is exasperating!!
ReplyDeleteIt gets harder to be patient when you just rired.
DeletePatience needed...but it is exasperating!!
ReplyDeleteYou can say that again!
Delete😎😄
DeleteJohns Hopkins and Penn Medicine have a portal called MyChart. Through the portal you can talk to your family doctor and she will respond within 24 hours or you can talk to the nurse and get some answers.
ReplyDeleteWe are stuck with UPMC. I don't see them as especially helpful in any of the situations I've had to deal with.
DeleteI wish I could offer some helpful advice but living in Australia with a completely different health system I have nothing. If you went to the emergency department and said you thought he was having another stroke would they be able to run some tests. I cannot begin to imagine how hard this is for you and can only say I am thinking of you both (and William and his cat) and admire your persistence but it must be so bloody difficult.
ReplyDeleteIf we went to the ER, he would be tested for a stroke, and when it was discovered he wasn't having one, he would be sent home.
DeleteI explained to my neurologist that alcohol stopped my hand tremors. She replied it is pity we don't have an alcohol pill that doesn't make you drunk and you could take it as needed. See how Tim goes with a couple of beers in the evening. He may be a lot better in the evenings and sleep better, but perhaps worse in the mornings. Sparkling Merlot may have a point about going to emergency.
ReplyDeleteInterestingly enough, Tim is a non drinker. Last night's beer saw him in bed shortly after 8. I went to bed a little after nine. He was soundly asleep. I tried very hard not to move. I woke up at midnight and he was coming back to bed. I asked how long he'd been up. He just got up to pee and put a couple logs on the fire. He fell back asleep until 4 am, woke up because he was starving, had his bowl of cereal, came back to bed and is still sleeping now, at 8 AM. That's huge. Seriously.
DeleteGoodness - you have been totally abandoned by the sound of things. I can only suggest you ask the Medical Centre to contact you if they have a cancellation, and perhaps make an appointment to see a cardiologist or as sparklingmerlot said, go to Emergency.
ReplyDeleteP.S. Sending hugs for you. As a primary carer I know just how difficult it is to just stand and watch and feel helpless.
ReplyDeleteI think that the worst part, Jenny, is watching him go backwards. We were looking for progress, and saw it. We were feeling very grateful for the improvement. But the tireder he got, the more befuddled he go. Yesterday, I noticed that his voice sounded very quavery again, much as it did immediately after the stroke. I cannot tell you how sick that made me feel inside.
DeleteKeep a written diary of what you do, when he takes a beer or med and his resultant sleep pattern and shaking or slurring events. You are working very hard to help, but collecting exact info and determining any trend is what will help any doctor help him better. I recall you said you'd tried melatonin, and it is not a sleeping pill like people think. It helps your body get ready to sleep. Some people will need 2-3 weeks on it to know if it will help, and I'm not sure he took it that long. Other docs say "don't take it." So, I wouldn't try it again unless the neurologist okays it. Some folks do fine with just one 325mg tylenol to help them settle a bit in order to sleep. Just keep records in case something starts working, but you should try just ONE new thing every 2 weeks, not 2-3 different things at one time, or you won't know what addition may actually be helping. Hugz, prayers, Linda in Kansas
ReplyDeleteI do keep a careful track, actually. The problem, as I see it, was that as the days passed, he became more and more exhausted. He handed off driving to me, which was a biggie. I knew he was having problems. He was becoming more and more 'foggy' on things, and last night, I noticed that his voice was getting quavery. The different things we tried were over the course of one week and 5 days. I'm really not sure that we could have waited for a couple months. It's a crap shoot really. Doctors get impatient with 'google doctors', but on the same token, if you are not getting guidance from a doctor, you've got no choice but to educate yourself and do the best you can. Last night, the beer was amazingly effective. Tim went to bed at 8 and is sleeping still (it's after 8 am)
DeleteI'm sorry you have to wait so long to see the doctor. It is so stressful which adds to the problem. You can ask the primary care office to put you on the list for cancellations. This has worked to get me in sooner. Hope you both can get some rest and that Tim starts improving again.
ReplyDeleteWe are on that list.
DeleteMy wife will work in people that need to be urgently seen, if they can come during off hours. But her definition of urgent and most people's definition of urgent vary. Here if definitions vary, the next best thing it to walk into an ER and demand to be seen. They can't deny patients and most often, lots of tests are ordered and done immediately and then get sent to the primary doctor who can then reassess the definition of urgent.
ReplyDeleteI guess that not sleeping doesn't sound like an urgent issue, but it just seems as if, combining it with 'post stroke' and regressive symptoms should make things just a bit more urgent.
DeleteP.S. Out here in rural America there is such a doctor shortage that a new patient appointment if often 6+ months out. My wife hasn't accepted any new patients for nearly five years to try to keep those waiting times down below that 6 month lead time.
ReplyDeleteIt is the same here. It took me a long time to find anyone taking new patients.
Delete8 PM to 8 AM sounds good. Rest is good, I imagine his body is wore out the same as yours is by now. Take care of yourself even if it means letting the dishes set in the sink and taking a little nap.
ReplyDeleteUgh. That's a frustrating (and scary) situation. Is there an ask-a-nurse line or something like that, where you could talk to a medical professional? Some hospitals run them, and that would at least give you the reassurance of getting some medical advice in lieu of an immediate appointment. Here in England we have an NHS hotline that connects us with a nurse (usually after a LOOOONG wait on hold) when we have medical questions.
ReplyDeleteI am not aware of this option herr, unfortunately.
DeleteCan you ask either the neurologist or gp to prescribe mild sleeping pills over the phone? Not all sleeping pills are harmfully addictive, especially for a short time.
ReplyDeleteI note that he did sleep at 4. For some reason that was often the time when I would finally get to sleep back in the day, not matter when I first went to bed. I think he has it right though — get up and do something.
I think he worries about keeping me awake.
DeleteI didn't know that insomnia was a common side effect after a stroke. I graduated from nursing almost forty years ago and we didn't learn that, didn't learn so many things. I hope Tim gets some relief and the docs can help. I did find this article, but you've probably already read it.
ReplyDeletehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC7990374/
I think that medical knowledge has grown in leaps and bounds in the last 40 years.
DeleteIt truly has and makes me feel so old:)
DeleteI do hope that there is a difference in today after that good sleep. Beer used to be used as all sorts of medicinal goodness - I am a firm believer in stout on occasion. And not just for a game of pool. Jeanie
ReplyDeleteYou worry about waking him up, he worries about keeping you awake, there might be a good reason to try separate beds for a little while. They can be in the same room if you want.
ReplyDeleteWhen I struggle to sleep I take an antihistamine (Doxylamine) that is usually in cold and flu night time tablets.
There are a heap of sleep music soundtracks on youtube - the one that always works for me is the dog snoring ones, something about that sends me right off to sleep. Crickets usually work well too. ;)
My father-in-law had that issue with staying up all night when he was first diagnosed with dementia. The first hospital my wife took him to did not do much, she was desperate to get him help and the hospital called the police on her threatening to have them all arrested. She took her dad to another hospital in another town with different ER doctors who diagnosed his issue was related to his elevated saline issue. After they regulated his saline level he stopped staying up all night. He still has dementia but he has been better since they treated the cause of his insomnia. The way our healthcare system is unless you want to wait for an appointment then the ER is where you have to take Tim so they will treat him immediately. I'm praying the doctors can diagnose the issue and treat Tim effectively.
ReplyDeleteHope all has gone well over the past couple of days
ReplyDelete