Update, yesterday it was 8 weeks since my last treatment. How’s the best way to describe things? Well, let’s just say that pretty much everything is back to relatively close to where we expect it’s possible for it to be.
In other words, any progress that we’ll see going forward is going to be slow and progress by inches not dramatic progress. With what looks like one possible exception. Sleep and fatigue…
I have been so unbelievably fatigued since these last treatments in the middle of June. It’s not uncommon for me to fall asleep 6 to 8 to 10 times a day - and quite often it’s in the middle of doing something - like making lunch or typing or channel surfing. It is really slowing me down in terms of what I can do and how much I can get done. In addition to that, I seem to develop a sleep pattern of 3 to 4 hours, get up and take more headache meds and then toss and turn for 2 to 3 hours and by 5 or 6 am I’m awake (but tired) and I do not start the day well rested…
I’m working with the sleep center at “my” hospital and one of the things they are looking at is not only obstructive sleep apnea (I’m going on 8 to 9 years of that) but also central sleep apnea - like maybe something with the embolizations, the radiation, the Onyx, something messed with the central sleep control in my head and that’s why this is all happening.
Have any of you had anything like that? Heard of anything like that? Where the treatment made sleep issues worse?
Or any other ideas?
Thanks in advance,
TJ
P.S. I actually made it through this entire message without falling asleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee. Shoot!
@TJ127 Hi TJ I have similar issues with my sleep pattern and before my health issue journey began I could fall asleep within a few seconds of hitting the pillow ( which annoyed my husband for some reason) and sleep straight through until I had to get up - I normally could get function on 6 hours of sleep.
Post embolism I would be much like you sleeping on and off through out the day- But then my sleep pattern has been terrible ever since for the last ten years,
I have tried loads of meds and marijuana gummies. They have helped a bit but I still have trouble falling asleep and staying asleep.
I have glue and onyx for my embolism and would be very interested in what your doctors have to say about a central sleep control issue and treatment.
Thank you for bringing up this topic
Angela
Thanks for touching base. As usual, it’s good to know we aren’t alone on this weird, painful and obnoxious journey, isn’t it?
My counselor/mental health therapist (as opposed to the occupational therapist, speech therapist…) has said that he would be very surprised if a good bit of my sleep issues aren’t from “damage” done by the glue, the radiation, or the change in blood flow that happened because of the embolizations. I believe the way he said it was, "if the radiation was strong enough to “fry” the hair off the back of your head and the glue was a large enough quantity so that your neuro surgeon and two of his PA’s could smell the Onyx in your room even the morning after, you probably disrupted enough blood flow that between the three, you messed with the central controls for your sleep patterns.
I have an appt at the Sleep doctor’s office next week. We’ll have a lot to talk about and I’ll definitely bring up the central sleep apnea issue. Stay tuned…
Yes, until God calls me home, you are absolutely correct, being alive and tired is vastly preferable…
I would just like to be less tired or at least even have a period of time every day where I’m not. Like, from noon to supper (or dinner as I believe our friends in England would call it?) not tired and the rest of it more fatigued, I could structure the “stuff” that I want to do around that…
I have not been through a fraction of what you have so I feel for you!
But I can relate to the fatigue as well. I don’t know if it’s just stress related or due to the avm but I’m fatigued and have never been the same since embolisation but yes definitely better to be tired and alive I guess
