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Tart Cherry Jam
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Default May 07, 2024 at 12:11 AM
  #421
A streak of good nights for me when I actually wind down before bedtime. Will do the same tonight. It is so rewarding. And yes, floss/scrape tongue/brush before bedtime feels very pleasant.

What happens then to me is that I wake up at 5AM hungry. I no longer fight it. I get up, have breakfast and either work until I am sleepy and then go to bed or go back to bed right away.

My pdoc agrees that this is far better than waking up at 3AM hungry. At 5AM, it is like having a very early breakfast. At 3AM, it is completely abnormal.

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Default May 15, 2024 at 08:38 PM
  #422
I'm glad that you're improving, @Tart Cherry Jam!

I've been pushing through the tiredness I feel in the early evening, getting a "second wind" and then going to bed later than usual, like at 11pm. Then, I might wake up alert at about 5am and either get up, or get another 90 minutes of sleep and get up at 6:30am. I seem to do well either way. Six or 7.5 hours of sleep seem right.

CPAP-wise, the new mask fits better, too, and the new machine has upgraded algorithms that seem to make exhaling a little easier. It also has an auto-start mode -- it starts up whenever I put the mask on and start breathing. This is helpful on the days when I sleep on the other side of the bed.

Hope all of you folks are practicing good sleep hygiene!

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Default May 15, 2024 at 08:47 PM
  #423
I had a bad night last night. I went to bed on time but ended up reading past my usual shut off time and thus stayed awake past the effectiveness of the meds and couldn’t get to sleep.

I felt subpar all day and opted out of the poker night and instead took a shower and relaxed with mind numbing tv. Plan to hit the hay early tonight.

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Default May 16, 2024 at 01:02 AM
  #424
I am going to be away until the end of the month. Looking forward to catching up then!

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Default Jun 29, 2024 at 09:23 PM
  #425
Just wanted to resurrect this thread and see how everyone has been doing. My sleep has been rough. Only been averaging about 4-5 hours even with the CPAP machine. I think reducing my morning meds and just taking night meds has affected that. Been worried about mania, but I think I am in good shape so far. Hope everyone has been well!!

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Default Jun 29, 2024 at 09:47 PM
  #426
I’m doing ok. I sleep fine for a couple days then it’s a rocky night or two so I take extra ambien and get a real good deep solid sleep, then go back to ok. I see the pdoc next month so I’ll ask him to write the script so I’ve always got extra. Oh, boy somebody be shoots off fireworks! They be illegal here. Hope they catch them and give them a stiff fine.

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Default Jun 30, 2024 at 01:54 PM
  #427
My new CPAP is working well. I've been getting at least 6 hours of sleep (mostly) and waking up for good at about 5:15am.

But I've started reading a book that I can't put down, so it's cutting into my normal bedtime. For example, on Friday night, I was reading in bed until 1:20 am the next day!

Stringing together a couple of good nights is better than nothing @Nammu -- good for you!

It's great reading you, @LadyShadow!

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Default Jun 30, 2024 at 02:03 PM
  #428
Oh, the CPAP is so very important to me. We had a line of severe thunderstorms sweep through our state, and we lost electricity for 18 hours. I woke up that night way too frequently.

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Default Jun 30, 2024 at 06:03 PM
  #429
I’ve been reading too late. I’ve got pretty good books but I consistently read past my set time.

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Default Jul 01, 2024 at 10:27 PM
  #430
Up late tonight too at 11:24pm, but I think I am going to go to bed early tonight and get a good night's sleep. Been seriously averaging 5 hours only, but I am still awake and alert. Just really going through a lot of emotions, and really worried about my boyfriend. I gave him the space that he needed today, and I just wish I can make things better for him. Will pray for him though, it's all I can do. I am sorry you had to suffer without your CPAP during the storms @SquarePegGuy I worry about that too with hurricane season starting now.

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Default Jul 27, 2024 at 04:34 PM
  #431
Just checking in with everyone on this thread and see how everyone's sleep is going. I actually got 8.5 hours of sleep last night, which is really good compared to what it has been. I am cutting out the Lithium in my life all together, which is a huge plus. I have been getting more hours of sleep lately which is good!

How's everyone's sleep been doing?

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Default Jul 27, 2024 at 05:57 PM
  #432
I’m slowly getting back to my usual time but the ambien hasn’t been working so well. I did see my pdoc a couple of weeks ago and he did increase my. Script but I’m conservative with it. I don’t want to get used to the new increase then have it not work when I need it. I did take the increase last night,….ooooo I slept sooo good. It was magical.

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Default Aug 01, 2024 at 07:19 PM
  #433
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Originally Posted by LadyShadow View Post
Just checking in with everyone on this thread and see how everyone's sleep is going. I actually got 8.5 hours of sleep last night, which is really good compared to what it has been. I am cutting out the Lithium in my life all together, which is a huge plus. I have been getting more hours of sleep lately which is good!

How's everyone's sleep been doing?
It's so good to read you, LS, and that you're getting more sleep and getting off a med!

I'm addicted to another fantasy novel, so I've been getting barely 6 hours sleep.

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Default Oct 12, 2024 at 12:43 AM
  #434
It has been a long time. I took a long break from these forums due to work pressures, health issues, and some personal projects that included a major task moving out of the old big Public Storage unit shared with my former roommate, now a friend, into a smaller unit of my own, and organizing this unit and my apartment, all against a deadline: getting the apartment ready for my son's visit (he lives a bi-coastal life and has a hybrid job). I could not greet my son while my apartment was full of boxes brought from Public Storage.

I am almost done with the Public Storage and home organization project, with a few remaining tasks, such as getting bookshelves to place above my TV to use the space in my unit efficiently. I have bought bookcases for the books I brought from Public Storage unit, but I still have several boxes with books and no more space for bookcases. So my son recommended I place shelves above the TV. I have posted an ASK on my local Buy Nothing group but nobody responded, so I will need to buy. Have not researched the options yet.

Through Buy Nothing, I gifted a lot of things I did not need, including those I brought home from the storage unit.

Some of the discoveries when I was going through boxes in the storage were absolutely delightful. For example, I retrieved my maternal grandmother's linen tea towel! It will soon be 20 years she since passed away, but I still have the tea towel. I do not even remember how and why and when I decided to bring the tea towel with me to America but I did. And its linen is a really tough, high quality material, so I plan to actually use the tea towel for many more years.

For several years, when my stuff and my former roommate's stuff were commingled in a huge garage-size Public Storage unit and only my former roommate, a super busy man, had the key, my stuff was essentially inaccessible. And I was not sure what was there because back when my former roommate and I stopped renting together, I packed under time pressure and did not even think of creating an inventory of stuff.

Now I have a growing inventory of my stuff in a Notion database! It is fun to develop it and if I need something, I can look up where, at home or in the storage unit, my stuff is. I would snap a picture of an item I want to include, upload it to the Notion app on my smartphone, add information and voila!

I have majorly reorganized my kitchenette. I took out ALL the stuff from ALL the cabinets and drawers and organized it logically. It turned out that I actually had extra space! If you put thought into how you arrange everything, it is more efficient and frees up space. And I am still enjoying it, meaning that every day I reach for something I need daily and find it within an easy reach at eye level (and not hidden in a low cabinet), I feel joy and also wonder why it had not occurred to me earlier to apply logic to how I keep the household.

I even added a degree of being less wasteful to all that, bought mesh produce bags to cut down on single use plastic bags, bought special boxes with carbon filters for the fridge to prolong the life of produce, and attached dry erase sheets to the outside of my fridge door on which I keep track of what is in the fridge and what needs to be eaten and cooked next. And I asked my cleaning lady (who comes very occasionally) to clean the fridge and arrange everything in it as she saw fit, and then I took photos of her arrangement (she clearly has a much higher spatial intelligence than I do) and now use these photos as a guide. And, am getting used to always keeping the same arrangement. And it feels far less chaotic this way, and not longer do I fear that some unidentified archeological remains are rotting in the back of my fridge for months .

The next bastion is the freezer.

The best part of the Public Storage project, though, was getting my old clothes. In-between 2017 and now, I gained and then lost of a whole lot of weight. I gained on Zyprexa and now I do not use it anymore. There were other factors besides going off Zyprexa that contributed to losing the weight. And so when I lost weight, I bought new clothes. But it turned out that, forgotten by me, there were clothes at the Public Storage unit purchased before Zyprexa and that now I am back at that weight. It is not my baseline weight, it is still weight after Depokote, Elavil and other weight gaining drugs, but it is the kind of weight where XL and XXL sizes at general clothing stores fit me, whereas on Zyprexa I could only buy clothes from speciality plus size retailers. After I brought those pre-Zyprexa clothes home from Public Storage, washed and dried them, I realized that I basically have two wardrobes. Enough clothes to rarely repeat what I wear to work. And I like them all, so I do not want to part with them. I have never had such a variety of clothes and it has never been so much fun getting dressed for work.

So these are my positive changes.

On the negative side, I have been having episodes with lighthheadedness lasting for half a day at time (starting typically in the morning) and after almost 18 months of having them, I have recently finally been diagnosed. It is a migrainous vertigo. It is a completely safe condition and a quality of life issue which does not endanger anything, but for me it is more than just quality of life because I simply do not have access to enough working hours during my week. The manager is really supportive and for now tolerates my sick days, but these episodes continue, I probably will go on a partial disability (say, work 80% time, receive disability from the private disability insurance through work for 20% of the time). It will be less income but I won't feel obligated to make up for sick days.

Also on the negative side, my attempts to return to donating platelets have not been very successful. Even though a platelets donation does not involve the loss of a lot of red blood cells, my ferritin still drops. So for now there is an embargo on donations, both from the internist and the hematologist.

Sleepwise, I am getting better in that I need, overall, less sleep. Both the sleep medicine nurse practitioner and the sleep psychologist (a CBT-I practitioner) think that my troubles which began instantly upon catching COVID more than 2 years ago were Long Covid and that I would continue getting better, as Long Covid, from what little is known, resolves after 2-3 years. Also, my CPAP therapy report shows less than 1 event per hour, so I am getting good therapy results despite leaks. With leaks, the Sleep Medicine NP gave me many recommendations and referred me to be fitted for a new mask by a sleep tech, something I will do soon. She herself has diabetes and sleep apnea and uses a CPAP and she shared some of her own tips, such as taping Nexcare sensitive skin tape to keep the mouth shut, literally. I have added it to my Amazon Subscribe and Save bundle which will arrive in early Nov and then I will start experimenting. And there are other things to try, so I feel hopeful that I will solve the problem with leaks but also very reassured that even now, while having this problem, I get good results in terms of the low count of apnea events per hour.

My sleep schedule can clearly be better, but I am taking it one day at a time and not aim for perfection.

It has been several months already since I last took Zyprexa. Now, it is just Seroquel for sleep. Sometimes more, sometimes less, but only Seroquel. And I am really happy not to be dependent on Zyprexa anymore.

I missed you guys while I was away form the forums and am so glad to be back! My sleep psychologist knows that I have the forum with friends and she was really happy that I I had found like-minded people and a sense of community.

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Long term side effects from medications, some of them discontinued:
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Default Oct 12, 2024 at 09:48 AM
  #435
Thanks for the update!

My cousin's wife gave me linen tea towels embroidered in different colors from her trousseau when i visited italy 50 years ago. I have never used them.
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Default Oct 12, 2024 at 08:31 PM
  #436
So glad to read you again @Tart Cherry Jam! I missed you, too, and I was worried that you wouldn't be back!

I've always liked to have closets and cabinets well organized. I'm such a visual thinker that I can visualize where my stuff is and can reach in and get something without looking most of the time. But for now I have to share the spaces and put up with the disorder.

Our sleep schedules will need readjusting in a few weeks when the clocks change (unless you're in AZ). I wonder how it will go this year....

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Default Oct 12, 2024 at 09:47 PM
  #437
So glad to see you guys! Thanks so much for the update @Tart Cherry Jam !! It's good that you're back - I am wondering how the time change will affect me too @SquarePegGuy .

I haven't been doing well with sleep the past few months - it's been really disturbed and all over the place. I have a pdoc appointment in a month and I am going to ask her if it's okay to increase the hydroxyzine. I have been on the same dosage for almost 2 years, and maybe I think I need more. Can't hurt to ask! But I am completely off the Lithium now, and doing really well otherwise. CPAP was giving problems because I thought it was pushing WAY too much air at one point, but it seems to have fixed itself for some reason. I may have to keep an eye on it.

Good seeing you guys again and I look forward to posting more!

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Default Oct 12, 2024 at 11:00 PM
  #438
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Originally Posted by unaluna View Post
Thanks for the update!

My cousin's wife gave me linen tea towels embroidered in different colors from her trousseau when i visited italy 50 years ago. I have never used them.
Thank you for teaching me a new word. Trousseau, I never knew it. I knew dowry and now have it figure out the difference. maybe dowry is money and trousseau is linen, clothes, bedding?

My grandmother's tea towel is just plain linen. White with light and dark pink stripes. No embroidery! Or else i would not use it, either.

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- obesity BMI ~ 38
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Default Oct 12, 2024 at 11:08 PM
  #439
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Originally Posted by SquarePegGuy View Post
So glad to read you again @Tart Cherry Jam! I missed you, too, and I was worried that you wouldn't be back!

I've always liked to have closets and cabinets well organized. I'm such a visual thinker that I can visualize where my stuff is and can reach in and get something without looking most of the time. But for now I have to share the spaces and put up with the disorder.

Our sleep schedules will need readjusting in a few weeks when the clocks change (unless you're in AZ). I wonder how it will go this year....
Do you mean sharing spaces with your wife? If so, you remind me of my maternal grandpa. He was super orderly. Also, he was used to cleanliness and his upbringing taught him that. He and his siblings were raised by a widow who worked outside the home as a bookkeeper. They lived in a house in a small town, more like a village, on the Kama river. I do not remember now how many siblings in total but at least 7. So every day, the kids had to tidy up and clean the house before the mother came home from work. Every single day. Everything had to be spotless. Sure, as they were poor, there were not much stuff in the house which always makes it easier to clean, but still, the standards were high: spotless every day.

And then he married my grandmother who was so-so on orderliness and they had two daughters, one of them my mother who was extremely, outrageously chaotic and who accumulated belongings and never cleaned. And my grandpa had to put up with living in a household which was clearly so far off from his standards. But he managed to keep his personal space pristine and spotless. His desk had almost nothing on it: a beautiful letter opener knife (wooden? not sure), an ink pot, and a semi-oval heavy weight. I am not sure now what the heavy weight was used for in those days. And all his papers were kept in drawers. My grandma's desk had piles, and piles, and piles of papers on it. In complete disarray that still made sense to her as she was not disoriented and I do not remember her ever looking for her stuff. She knew where her stuff was.

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Long term side effects from medications, some of them discontinued:
- hypothyroidism
- obesity BMI ~ 38
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Default Oct 12, 2024 at 11:13 PM
  #440
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Originally Posted by LadyShadow View Post
So glad to see you guys! Thanks so much for the update @Tart Cherry Jam !! It's good that you're back - I am wondering how the time change will affect me too @SquarePegGuy .

I haven't been doing well with sleep the past few months - it's been really disturbed and all over the place. I have a pdoc appointment in a month and I am going to ask her if it's okay to increase the hydroxyzine. I have been on the same dosage for almost 2 years, and maybe I think I need more. Can't hurt to ask! :
I have recently listened to a recording about hydroxyzine and other anticholinergic drugs. The psychiatrist who recorded himself talking examined the evidence about the link between these drugs and Alzheimer's (that stuff has been in the new lately) and found it very weak. If you are interested, I will see if I can find this recording in my search history.

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Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg


Gabapentin 1200 mg+Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications, some of them discontinued:
- hypothyroidism
- obesity BMI ~ 38
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