Connect
Can’t seem to stay awake throughout the day!
I have Narcolepsy, Arachnoid cyst on my brain, Pulmonary artery aneurysm, Heart murmur, Bulging disc in my neck, Failed lumbar fusion, Sjögren’s, Anemia and the list goes on a good ways! My concern is I’m taking medicine to stay awake but also a lot of other meds( around 20 pills a day) I have sleep apnea and can’t wear a cpap because I wake up choking from having a sphincter above my stomach that’s not closing and allowing the stomach acid to back up. I sleep from 6-8 hours a night, I can set up on the side of the bed in the morning and be ready for a nap or midday get so sleepy I can feel it coming on and can’t stop it, I usually drop my phone ( due to the back I’m now on disability and can barely walk to the mailbox so I’m on my phone researching a lot) my head tips, and at times I can hear my surroundings but I’m so groggy I can’t respond. It usually takes me 2 hours to come out of it and if my family wakes me early I’m groggy and headaches for a few hours. I have Cataplaxy and occasionally wake up paralyzed if I interlock my fingers I hear the family and can’t move and the longer I seem to start trying to wake my hands seem to be getting tighter, all it takes is them touching me or pulling my hands apart for me to come out of it. I can also at times be setting here and my head will drop then wake right back up like I’m blacking out. I’m starting to wonder if my breathing is affected by my head tipping and closing off part of my airway, almost like I’m unconscious. I spent 8 months sleeping in a recliner until 2 weeks ago when I had a pain stimulator put in, now that I’m back to sleeping in bed it hasn’t made a difference. I appreciate any suggestions and hope someone can benefit from this too! And don’t worry I don’t drive unless it’s a 10 minute drive to the doctor.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
@sbtheplumber1 oh my. I’m sorry you have been through the wringer.
I have Narcolepsy II. That is also known as Idiopathic hypersomnia.
My brain doesn’t get enough of a deep sleep. I wake up tired, not refreshed, and I’m extremely tired all day. I also take a medication to keep me awake during the day.
Unfortunately, I have no suggestions. I also have dementia so my thinking is a bit messed up!
Blessings.
-
Like -
Helpful -
Hug
2 ReactionsHi @sbplumber1 and @SusanEllen66 This post came up under my post covid group and I am so sorry for your challenges. I too now have central/sleep apnea and do not get to deep sleep now with cognitive memory issues now and difficulty staying awake. Hope this isnt too simplistic as I have found sudoku puzzles very helpful with stimulating my brain without causing sleepiness/difficult symptoms and helps my cognitive memory issues as well. 🤞 Hope this helpful and quickest healing journey to you🌈
@SusanEllen66 Thank you so much for pointing that out about Narcolepsy 2! I’m going to the Neurologist in a couple hours , now I have something to talk to him about.
@SusanEllen66 I read that Narcolepsy 2 is part of dementia
@SusanEllen66 @law59 My doctor wouldn’t check the daytime sleepiness he thinks it’s all the pain meds I’m on , he said get off of them and he will check me . I was tested a few year ago by my retired doctor when I wasn’t on pain meds and I was tired
@law59 @sbtheplumber1
I have never seen anything about Narcolepsy 2 and dementia being “related”, but I will check it out.
Pain meds, among others knock me out! If I take a regular Tylenol (not PM), it makes me sleepy.
Thanks for the brain game suggestion. I do Wordle, 500-1000 piece jigsaw puzzles, I also fool around with painting. The biggest brain exercise I do is working on my family tree on Ancestry. That requires a lot of skills.
-
Like -
Helpful -
Hug
1 ReactionHi,
My husband has cognitive impairment, secondary to CAD causing small vessel disease, and has had 5 known strokes, with ongoing silent Lacunar strokes. Related to his cardiac disease he also has stage three kidney disease which results in anemia. You mentioned anemia which itself causes extreme fatigue, regardless of quality sleep, and if like him, you are on blood thinners it can cause silent internal G.I. bleeding. Also cognitive impairment whether it’s reached the level of Dementia yet, is exhausting as the brain has to work harder to complete sequential tasks and executive functions, so yes known to cause daytime drowsiness. Anyone will especially experience daytime, drowsiness, if they are recovering from a stroke. And as several have mentioned, drowsiness is caused by many of the medication’s given to manage hyperlipidemia, hypertension, anxiety, etc.
@elisabv2u yes I just found out about the anemia, I’m waiting on heart, lung, and neurologist clearances to get a colonoscopy. I was taking Naproxen twice a day but stopped about a month ago to have a pain stimulator put in and since the stimulator leads moved and I’m needing the colonoscopy and stomach surgery I have dealt with the pain so I can be prepared for the surgeries. I’m on a lot of other meds cymbalta, duloxetine, hydrocodone, gabapentin plus others. I take the lowest doses I can get
@sbsbtheplumber1 with so many chronic conditions and medications, hopefully your neurologist will be able to figure it out. I am a licensed behavioral health clinician and any of those meds alone can cause the symptoms you mention, especially as we get older and metabolize them differently. My husband also recently had a spinal fusion and within 24 hours the hydrocodone had him in such an altered status of confusion and inability to control his body that I had to call 911. That combined with a post surgery muscle relaxer- it was like he was on “ roofies.” He could hear me, but couldn’t make his body respond. I hope you get some answers and relief soon.
-
Like -
Helpful -
Hug
1 Reaction@elisabv2u I wish he would but I don’t see my Beurologist for another year. I’m hoping to get the colonoscopy, another pain stimulator , then stomach repair asap so I can try getting off some meds I’m taking about 17 prescriptions a day and seeing I believe 12 different doctors. Would have been so nice to have gotten an appointment at Mayo for everything instead of just my back!
-
Like -
Helpful -
Hug
1 Reaction