☼ LilBit: polypharmacy nightmare

[LilBit]

Mar 4

 

130.4 lbs  15.1% fat  22.3 BMI

 

2040 cal

 

9:30am  diarrhea, 99 temp

10:00am  87.5mg Depakote

10:00am  116/80 BP  106 HR

10:30am  Enteragam

10:45am  bowl of cereal with banana (600 cal)

11:00am  Azithromycin 500mg, Amoxicilin 125mg

11:30am  99 temp

2:20pm  cup of yogurt with coconut oil and honey (330 cal)

3:30pm  crying spells

3:40pm  100 temp

5:00pm  large avocado (320 cal)

5:20pm  diarrhea

5:40pm  99.9 temp

6:00pm  cinnamon roll (390 cal)

7:15pm  99.8 temp

8:00pm  salmon with asparagus (400 cal)

8:30pm  125mg Amoxicilin 

9:45pm  87.5mg Depakote, 20mg Quetiapine, 2mg Diazepam 

11:00pm  101 temp

11:50pm  200mg Ibuprofen

12:00am  finally able to go to bed, used CPAP, got about 5 hours of sleep

 

 

Mar 5

 

Still sick but feeling slightly better, body not as sore and no fever but still lots of congestion.  Continuing antibiotics and rest with lots of fluids.  Still also have fatigue and humming/pressure in head.

 

131.4 lbs  15.5% fat  22.4 BMI

 

2200 cal

 

10:00am  97.9 temp

10:55am  87.5mg Depakote

11:05am  SpO2 95% PR 105,  BP 107/76

11:30am  Enteragam

12:00pm  oatmeal with milk and bananas (700 cal)

12:00pm  Azithromycin 250mg, Amoxicilin 125mg

1:00pm  98.8 temp

4:30pm  banana milkshake (750 cal)

4:40pm  Florastor

5:12pm  98.3 temp

8:30pm  avocado (320 cal)

9:00pm  salmon with broccoli (430 cal)

9:30pm  87.5mg Depakote, 20mg Quetiapine, 2mg diazepam, 125mg Amoxicilin 

11:00pm  99.8 temp

11:30pm  diarrhea

11:40pm  bedtime, used cpap, had hard time falling asleep and woke a couple of times at least, got about 4 1/2 hours of sleep

 

 

Mar 6

 

Still thick nasal and chest congestion, coughing up mucus with chest irritation and cough.  Thick mucus when blowing nose.  Weakness and fatigue.  Symptoms seem to get worse in the evening.

 

131.2 lbs  15.4% fat  22.4 BMI

 

2340 cal

 

10:00am  98.3 temp

10:45am  BP 124/88 PR 101

11:00am  87.5mg Depakote

11:15am  diarrhea

12:00pm  bowl of cereal and banana (600 cal)

12:00pm  Azithromycin 250mg, Amoxicilin 125mg

3:00pm  turkey sandwich from Subway and chips (500 cal)

4:30pm apple juice (140 cal)

6:10pm  98.8 temp

6:40pm  vanilla banana protein shake (500 cal)

8:00pm  beef chili with rice (600 cal)

9:00pm  125mg Amoxicilin, 20mg Quetiapine, 2mg Diazepam, 87.5mg Depakote

11:30pm bedtime, was only able to keep cpap on for a couple hours and got 4 hours of broken sleep

 

 

Mar 7

 

Reduced Depakote to 150mg daily today divided in 2 doses of 75mg each.  Still have the following symptoms from the pneumonia:

 

Sharp pain when breathing

Cough

Congestion

Fatigue

Maiase

No appetite

Shortness of breath

 

132.1 lbs  15.7% fat  22.5 BMI

 

2320 cal

 

10:30am  soft/loose bm

10:35am  98.1 temp, 98% SpO2, PR 95,  BP 110/70

11:40am  75mg Depakote

12:30pm  bowl of cereal and banana (500 cal)

12:30pm  Azithromycin 250mg  Augmentin 125mg

4:45pm  milkshake with scrambled egg whites, spinach, tomatoes, banana, apple, english muffins, turkey bacon (1100 cal)

8:30pm  salmon with pesto pasta and green beans with apple juice (720 cal)

9:45pm  75mg Depakote, 20mg quetiapine, 2mg Diazepam, 125mg Augmentin

12:00am bedtime, used CPAP, got about 5 hours of sleep.  Took mask off around 7 am and got up a couple hours later.

 

 

Mar 8

 

131.7 lbs, 15.7% fat, 22.5 BMI

 

2440 cal

 

10:00am loose bm

10:00am  97.9 temp, HR, BP normal

10:30am  Enteragam, 75mg Depakote

11:15am  bowl of cereal and banana (600 cal)

11:20am  125mg Augmentin, 250mg Azithromycin

2:15pm  avocado and tomato soup (450 cal)

5:00pm  banana vanilla protein shake (550 cal)

8:20pm  apple juice (140 cal)

8:40pm  chicken wings (700 cal)

10:30pm  20mg Quetiapine, 2mg Diazepam, 75mg Depakote, 125mg Augmentin 

12:00am  bedtime, kept CPAP on for an hour and a half, had a hard time getting comfortable, got about 4 1/2 hours of broken sleep and got up at 10am.

 

 

Mar 9

 

Feel like I am getting over the cold/infection. Still have a cough and congestion but none of the other symptoms.

 

132.75 lbs  16% fat  22.7 BMI

 

2090 cal

 

10:15am loose bm

10:40am  75mg Depakote

11:00am  Enteragam

1:00pm  french toast with strawberries and banana with 2 scrambled eggs (950 cal)

1:00pm  Augmentin

2:00pm  brain fog

3:00pm  apple juice (140 cal)

4:00pm  brain fog/DR

6:00pm  grilled chicken with spaghetti and soup w/ salad (1000)

8:10pm  125mg Augmentin

8:15pm  crying spells/hopelessness

9:00pm  75mg Depakote, 20mg Quetiapine, 2mg diazepam

11:30pm  bedtime

Wore CPAP mask for approximately 5 hours and 20 mins.  Time change happened, was in bed for another 2 1/2 hours after that.  Got about 5 hours of sleep.

 

[LilBit]

Good news is it looks like the worst of my cold or pneumonia or whatever it was is gone!  Bad news is my anxiety, depression and exhaustion seems a bit worse.  Trying to hang in there.

[Carmie]

Glad to hear your chest problems are gone Kev💚

[Rachellynn]

Been following you because I’m in a similar position with insomnia. I’m glad your illness is on its way out. How’s your sleep now dear? XOX

[Altostrata]

Kev, good to hear pneumonia is clearing up. Antibiotics can be hard on you too, hang in there.

[LilBit]

15 hours ago, Rachellynn said:

Been following you because I’m in a similar position with insomnia. I’m glad your illness is on its way out. How’s your sleep now dear? XOX

 

Hello Rachellyn, nice to meet someone new!  Thanks, unfortunately my sleep is as bas as ever.  I haven’t seen much improvement over the past 8 months.  Last night I got about 3 hours of sleep.  Out of all my symptoms the insomnia has been the most debilitating and the only reason I have not returned to my full time job yet.  I am hanging in there though...

[Rachellynn]

Glad your hangin in there. Three hours a night is encouraging. It will get better, looks like you even had some 5 hour nights. My sleep has gone from 2-3 hrs, down to zero 😕 praying for you, praying for a miracle! XOX

[LilBit]

Mar 16

 

132.35 lbs  15.8% fat  22.6 BMI

 

2470 cal

 

10:30am  62.5mg Depakote

2:00pm  chicken tenders and fries with vanilla shake (1400 cal)

3:30pm  granola bar (100 cal)

5:20pm  chocolate milk (250 cal)

10:30pm  chicken teriyaki bowl (720 cal)

12:00am  62.5mg Depakote, 20mg Quetiapine, 2mg Diazepam 

1:00am  bedtime, cpap (kept on for 7 hours) and binaural beats, fell asleep and woke around 5:30, then again at 7, fell back asleep until 8 and then got put of bed at 9.  Got between 5-6 hours of sleep I think.

 

 

Mar 17

 

133.2 lbs  16.1% fat  22.7 BMI

 

2150 cal

 

10:00am  62.5mg Depakote

10:45am  bowl of cereal (450 cal)

2:00pm  chicken fajitas with rice and refried beans (1200 cal)

8:30pm  mixed greens salad with avocados, chicken breast with brussels sprouts (500 cal)

9:30pm  abdominal cramps 

10:00pm  62.5mg  Depakote, 20mg Quetiapine, 2mg Diazepam 

10:40pm  diarrhea

11:00pm  bedtime, tossed and turned and woke several times, did not sleep well.  Got about 3 hours of sleep.

 

 

Mar 18

 

134.55 lbs  16.6% fat  23 BMI

 

2700 cal

 

8:30am  Enteragam

9:00am  sausage egg & cheese mcmuffin with strawberry banana smoothie (700 cal)

9:15am  62.5mg Depakote

10:00am  diarrhea

10:20am  fatigue, malaise

12:30pm  lunch - salmon, rice, sweet potatoes, salad (550 cal)

6:30pm  banana and peanut butter (250 cal)

8:45pm  8oz steak with broccoli and macaroni & cheese w/ cup of milk (1200 cal)

10:00pm  20mg Quetiapine, 2mg Diazepam, 62.5mg Depakote

12:00am  bedtime, got between 3 and 4 hours of sleep. Tried binaural beats and cpap.

 

 

Mar 19

 

134.5 lbs  16.8% fat  23 BMI

 

2100 cal

 

Lots of brain fog and anxiety today and I feel like I am having increasing difficulty writing, speaking (holding conversation) and just thinking in general.  Definitely noticing cognitive decline and just feel like I am in a daze most of the time.  Today I got really stressed because I received a phone call from the director of the department I work in, she was on the phone with the director of the HR department.  They were getting ready to terminate my employment, saying they need to fill my position, until I explained the confusion with my medical leave dates and how I have been working with my doctors, the insurance company and the department that handles time away from work.  They are now reevaluating and the bottom line is that I will have to return or I will be terminated because they need to fill the position, since my FMLA is expired.  Now I am considering going back in fear of losing my job.

On another note I have the weird numb full feeling in my right side groin again for the past few days.  I plan on mentioning it to my doctor tomorrow.

 

8:00am  Enteragam

9:00am  62.5mg Depakote

9:20am  sausage egg and cheese mcmuffin with strawberry banana smoothie (800 cal)

1:30pm  6 inch tuna sandwich on wheat with veggies and chips (600 cal)

7:30pm  Orange Chicken with steamed rice (700 cal)

9:30pm  20mg Quetiapine, 2mg Diazepam, 62.5mg Depakote

 

 

Mar 20

 

133.6 lbs  16.3% fat  22.8 BMI

 

2700 cal

 

Still coughing up phlegm in small amounts.  Tired from not sleeping well lately, got about 4 hours of broken sleep last night.  Tried falling asleep with binaural beats and cpap and woke 2 hours later with hose detached.  Removed mask and fell back asleep for another hour and woke, from snoring I think. Fell back asleep for another hour or so.  Woke at 6 and couldn’t go back to sleep so got up shortly after 7.

 

I met with my doctor today and she referred me to another Endocrinologist just to make sure we haven’t missed anything in regards to the weight/fat loss.  Otherwise everything else looks ok as far as she is concerned.

 

Today I felt very agitated and irritable with more anxiety.  I may hold a bit on the Depakote taper to see if I notice any change but due to the adverse reactions from it also wanting to try to get off of it as soon as I can.

 

9:00am  62.5mg Depakote

11:15am  Enteragam

1:30pm  salad with southwest eggrolls (1100 cal)

2:30pm  irritability 

6:40pm  banana (100 cal)

7:00pm  vanilla shake (660 cal)

9:00pm  turkey burger (650 cal)

9:30pm  20mg Quetiapine, 2mg Diazepam, 62.5mg Depakote 

10:30pm  peanut butter with cup of milk (200 cal)

11:30pm  bedtime

Fell asleep with cpap for 2 hours, took off and fell back asleep and woke up once, then got another 2 hours of sleep.  Got about 4 1/2 to 5 hours of sleep total.

 

[Rachellynn]

@LilBit your sleep improvement is really giving me hope! Keep going! 

 

Sending love and healing❤️

[LilBit]

Thank you @Rachellynn... not really sure if it is improving but I'll take what I can get.  I feel like my situation is difficult because it is a combination of withdrawals, adverse reactions, insomnia that I originally had and sleep apnea.  It is going to be a long journey but it has to improve eventually!!

[Rachellynn]

@LilBit you are not having total/complete insomnia anymore!! That is great...it will be slow (perhaps) but you are making strides and it looks like you are no longer losing weight which is also good. I have faith in both of us. You got this🙏🏼

[Altostrata]

Hi, LilBit, you're still recovering from pneumonia, is that correct?

 

I am seeing much less nausea and diarrhea in your daily notes. I think this indicates reducing the Depakote is going in the right direction. Any of the 3 drugs you're taking can cause foggy brain.

 

As ever, I am concerned about those 3 drugs you take at the same time each night. The combination may be interfering with your sleep. It will be a good thing when you're off Depakote.

[LilBit]

19 hours ago, Altostrata said:

Hi, LilBit, you're still recovering from pneumonia, is that correct?

 

I am seeing much less nausea and diarrhea in your daily notes. I think this indicates reducing the Depakote is going in the right direction. Any of the 3 drugs you're taking can cause foggy brain.

 

As ever, I am concerned about those 3 drugs you take at the same time each night. The combination may be interfering with your sleep. It will be a good thing when you're off Depakote.

 

Yeah, I still have a bit of a cough but otherwise much better.  I’ll be glad once I’m off of the Depakote too!  I noticed my mood changing a few days ago and I was very irritable and agitated.  That has calmed down but now I have groin pain again which I am getting checked out on Monday... it’s always something!  I also am still getting thinner despite not losing a significant amount of weight.  Following up with docs and hanging in there.  

[LilBit]

23 hours ago, Rachellynn said:

@LilBit you are not having total/complete insomnia anymore!! That is great...it will be slow (perhaps) but you are making strides and it looks like you are no longer losing weight which is also good. I have faith in both of us. You got this🙏🏼

 

Yes.... we can get through this, we have to!

[Altostrata]

What is your plan for your next Depakote reduction?

[LilBit]

I’m not sure yet, I am thinking I should continue the twice daily dosing though to prevent interdose WD symptoms.  I was experiencing some mood swings and I also lost my job yesterday so I am thinking of holding for a bit or maybe making a smaller drop of perhaps 10mg.  What do you think?

[Altostrata]

I would reduce the nighttime dose. As ever, I'm worried about those 3 drugs taken at once.

 

Very sorry about your job.

[LilBit]

Thanks Alto.  The way I try to look at it is that I wasn't ready to go back anyway, and there will be other opportunities for me in the future once I am well enough to work.  I've reduced the nighttime dose of Depakote to 47.5mg for this week, for a total daily dose of 110mg.  The main things I am noticing are a decline in cognitive function and trouble with my eyes focusing.  My sleep seems like it has slightly improved but I still feel pretty tired.  I am also still feeling malaise and can't help but notice more thinning of my face and fat loss in my arms etc.  I am definitely feeling some anxiety today as well.  Hanging in there as best as I can!

[Altostrata]

Why do you think you need Depakote for mood swings?

 

This is very good news, LilBit.

 

On 3/24/2019 at 7:45 AM, LilBit said:

 

@Rachellynn I hate to hear that you are suffering like this.  I know the pain all too well and stress, irritation, anxiety and depression definitely do not help.  It is a vicious cycle.  As it is, your brain and CNS are on constant high alert from the WD and all of the drug changes.  It seemed like when this was happening to me, the only thing that truly helped was acceptance and not trying to sleep.  The more you try it seems, the more you won’t, as crazy as it sounds.  Relaxing, destressing, meditating, avoiding triggers and self care are super important.  I wish you had a good support system because that has gotten me through the worst of times.  I am glad you are on this site at least, so you know you aren’t alone!  

 

Have you tried listening to binaural beats? Believe it or not they actually helped me.  The ones by Jody Hatton on YouTube are great.

 

For the first time in almost 9 months now, I think I slept 6 hours last night without waking (If I did I don’t remember).  It has to get better and it will!  The only other thing which worries me is the weight loss which I am hoping will improve as I taper and get through WD.  Please try to hang in there!  Sending hugs 🤗💛

 

[LilBit]

As far as I’m concerned I don’t need Depakote at all!  🤐  😝  What I meant was I think I noticed some symptoms after my last drop, so because of that and the stress I was going through I thought it was best to make a smaller cut this time.

[LilBit]

Mar 26

 

Now I feel muscle weakness throughout my body this morning.  I don’t feel as much brain fog as yesterday at least.  Not sure why I am having issues with diarrhea again.  I only got about 3 hours of sleep last night, had trouble falling asleep for some reason.

 

2200 cal

 

8:00am  diarrhea

8:45am  Enteragam, 62.5mg Depakote

9:00am  breakfast- banana and pineapple mango smoothie (450 cal)

10:30am  diarrhea

12:45pm  lunch - 6 in tuna sandwich with veggies and sun chips with lemonade (850 cal)

3:30pm  nausea/stomachache

4:50pm  snack - banana and apple juice (200 cal)

5:30pm  worse brain fog 

7:30pm  brain fog gone

8:00pm  dinner - salmon with broccoli and mixed greens with cup of milk (700 cal)

10:30pm  nausea/diarrhea

1:00am  bedtime, fell asleep within 20 minutes and woke 4 hours later.  Fell back asleep for another hour, got up around 7.  I think I got 5 hours total.

 

 

Mar 27

 

134.04 lbs  16.5% fat  22.9 BMI

 

1520 cal

 

8:20am  bowl of cereal (400 cal)

9:30am  62.5mg Depakote

10:00am  nausea, malaise

11:00am  banana (100 cal)

2:00pm  2 grilled chicken fajitas (680 cal)

3:00pm  apple juice (120 cal)

5:00pm  weakness/malaise/brain fog

7:20pm  banana and apple juice (220 cal)

11:30pm  20mg Quetiapine, 2mg diazepam, 47.5mg Depakote

12:30am bedtime, took a little while to fall asleep and woke around 5 am, might have fallen back asleep for another 30 mins or so.  Got between 3-4 hours of sleep.

 

 

Mar 28 

 

134 lbs  16.5% fat  22.9 BMI

 

Weight staying steady but there is drastic fat loss what seems happened overnight!  My face/hands look even thinner, completely stumped as to what is going on.  Feel weak with fatigue, malaise, pallor, no appetite. I have also noticed the past few days my eyes are dry, especially my right eye. Walking is even a bit of a struggle now.  Lots of upcoming doctor appointments so we will see.

[Carmie]

Hi Kev, 

 

I’m sorry you’re not getting a lot of sleep. Why do you go to bed around midnight or after midnight most of the time? Have you tried going to bed earlier? If you go to bed at the same time every night, and get up at the same time every morning it might eventually help get your circadium rhythms get back on track. It doesn’t matter if you can’t fall asleep early, just lay there and try and float through the way you’re feeling. 

 

Also, do you stay away from screens a couple of hours before bed, whether computers, phones, tablets, the TV etc. You probably know that they can also interrupt sleep. 

 

I found getting up at 6am in the morning and getting rid of screens in the evening has helped me. 

 

Sending hugs🤗

[JackieDecides]

49 minutes ago, Carmie said:

do you stay away from screens a couple of hours before bed, whether computers, phones, tablets, the TV etc. You probably know that they can also interrupt sleep. 

 

 

I try to do this but sometimes forget to turn off TV early

[LilBit]

18 hours ago, Carmie said:

Hi Kev, 

 

I’m sorry you’re not getting a lot of sleep. Why do you go to bed around midnight or after midnight most of the time? Have you tried going to bed earlier? If you go to bed at the same time every night, and get up at the same time every morning it might eventually help get your circadium rhythms get back on track. It doesn’t matter if you can’t fall asleep early, just lay there and try and float through the way you’re feeling. 

 

Also, do you stay away from screens a couple of hours before bed, whether computers, phones, tablets, the TV etc. You probably know that they can also interrupt sleep. 

 

I found getting up at 6am in the morning and getting rid of screens in the evening has helped me. 

 

Sending hugs🤗

 

Thanks   I've tried the whole sticking to a set bedtime thing but it tended to have a paradoxical effect, in that if I went to bed when I wasn't tired or sleepy, I would lay there awake and start getting anxious because I couldn't fall asleep.  I found it also put added pressure on me to be sleepy or tired by a certain time, kind of like the paradoxical reaction where you don't relax when someone tells you to relax.  I would sometimes be able to relax, but I still couldn't fall asleep.  If I did, I would wake within an hour or two.  I'm actually trying a different approach where I make my bedtime earlier and earlier a little at a time in the hopes that my brain will adjust, waking at 6am every morning.  Last night I actually went to bed much earlier because I was so tired, around 10, and fell asleep within an hour, which I guess isn't so bad.   I do try my best to avoid any screens within an hour or 2 before bed, and if I must use one I make sure the screen is set to a warm color and on a low brightness.

[LilBit]

I am quickly progressively feeling worse in terms of the muscle weakness, it's also accompanied by random twitching.  I feel it all over.... eyes, arms hands, legs, feet...  I have the EMG scheduled for 5/3 I am just hoping this is just lack of sleep/WD and not something serious like some kind of lower motor neuron syndrome.   Dr Google mentions something about Guillain Barre Syndrome but I am not even going there until I get some kind of diagnosis on what the heck this is.  Coincidentally this happened after my infection/pneumonia and then the strange bout of diarrhea.  

[LilBit]

Guys I really need some moral support right now, I’m very scared.  Between the suddenly feeling weak this week to further wasting, earlier this morning I had some chest discomfort and now I have a pain that shoots down my left arm when I twist it a certain way.  Literally every part of me is either sore, in pain, weak, or all of the above.  I also have random twitching in various muscles and have a hard time keeping my eyes focused when looking at things that are farther away.  My mind feels like it is turning to mush.  It seems I was able to sleep better without the CPAP but my breathing is more labored now for some reason and my snoring has gone from a light nasal sounding snore to a deep one.  I just want to cry... I am trying to hang in there but this last 9 months has been hell and I just feel like I am progressively getting worse.  I look sick, unhealthy and not anything like my former self.  I am trying to focus on the positive but right now I don’t see it.  Thanks to anyone who is reading this and can send some positivity or ideas my way.  I love you all ❤️😔

[GonnaBeOk]

LilBit, I'm just logging in to send you a big hug. This is a scary process. I'm often scared too.  Just wanted to let you know you aren't alone. xo

[Goosie]

Sending love and support.   I am also having a hard time after a brief window.   We can do this.  

[Altostrata]

We love you too, Kev. Hang in there.

 

I don't know what the chest discomfort may be. Is there a convenient urgent care center near you? Good that doctor visits are coming up, your other health issues need to be reviewed.

 

It may be that you are experiencing some withdrawal from Depakote now. You've reduced it quite a bit. When was the last cut? Is that when the new symptoms started?

 

Do you want to hold on tapering for now?

 

Did you have any success with melatonin? Carmie had a good idea, start your sleep cycle a little earlier by taking melatonin at, say, 10 p.m. If it doesn't make you sleepy, you don't have to go to bed right off.

[Carmie]

I’m really sorry you’re going through such a hard time Kev, 

 

Sending hugs your way🤗

[LilBit]

Thanks for the love and support guys, it means a lot!  The good news is the chest discomfort is gone, but I had a new weird symptom last night: excruciating nerve pain in the back of my right thigh that lasted a few moments followed by slight numbness and then went away.  New things scare me lol.  

 

My my last Depakote cut was a week ago, 25mg, so I am down to 60mg in the morning and 25mg in the evening.  I was thinking about cutting out the evening dose starting tomorrow. I considered holding on tapering but I am so concerned about adverse reactions from it, my gut is telling me that there is more than WD symptoms going on.

 

Umfortunately melatonin did not help much, it seemed to have a paradoxical effect actually, but maybe once off of the Depakote (at least the evening dose) I can give it another go and see what happens.  Thank you Alto as always for your suggestions and concern.... I am really trying to hang in there.  I hope all of you have a wonderful weekend and if you are suffering or struggling we we will get through this!

[Songbird]

Hey Kev, we haven't heard from you in a while.  I am concerned - are you okay?  Please keep us updated.

[LilBit]

Thanks for checking in Songbird, the truth is that I have not been doing too well.  I reduced the Depakote to 25mg today.  Been feeling extremely tired and out of it with brain fog and increasing tinnitus.  Yesterday I felt dizzy during the afternoon when we were walking around a flea market and I also had an auditory hallucination in the middle of the night/morning the day before.  I thought I heard my partner say my name, but when I took my earplugs out he was sound asleep.  The cognitive decline is becoming debilitating because my sleep seems to not have improved at all in the past 10 months, and I feel like my brain and body are deteriorating because of it.  I look pale and sickly... I have appointments with a new sleep doctor, neurologist, endocrinologist and my GP coming up soon to check more things.  Something happened to me back in July of 2018 which totally screwed up my sleep and the cumulative effects are catching up with me and I am really suffering.  I’ve stayed off of here for a bit since I haven’t had any good news to report lately.  I have been extremely depressed and hopeless feeling like this is never going to get better. 😔

[Songbird]

Thanks for replying.  I'm sorry you're not feeling well.  I believe it will get better, but it's going to take some time for your body to sort out the mess.  During the hard times I've found it helps to not think about the future and just focus on one day at a time. 

 

The depression and feelings of hopelessness are also symptoms, and it might help to use some mindfulness techniques.  For example, I've found it can help give your internal negative voice a name (e.g. “doomcloud", “chatterbox", "monkey mind" or whatever name you want) so that you can separate this voice from your real self.  When the negative thoughts come, you can just observe them and say to yourself  "oh, there's the Doomcloud again".   Then the negative thoughts and feelings are just thoughts and feelings, they are not "you".  I hope that makes sense.

 

I understand not wanting to hang out here too much if you're feeling bad, but it would be good if you could check in, maybe a couple of times a week.  Are you able to post some daily notes so we can see where you're at? 

[LilBit]

That’s a good idea, I am going to try that.  I have been overwhelmed with negative thoughts and depression here lately because of my condition, despite the wonderful support I am receiving from my partner, friends and family.  I feel guilty that I am such a burden, and I know I shouldn’t have those feelings and that they are not helpful.  I can definitely check in and post notes.  I will share some from the past week in a separate post.

 

 

[LilBit]

Apr 21

 

Today I felt a little better than yesterday.  I reduced the Depakote to 30mg.  I did some work out at the motel which really helped distract me and I felt productive.  Was supposed to go to my sister’s house for Easter but her and the kids have been sick with a stomach virus so that was cancelled.  

 

134.85 lbs  23 BMI  16.8% fat

 

2460 cal

 

9:00am  30mg Depakote

10:00am  Enteragam

11:00am  2 sausage egg and cheese burritos with orange juice (800 cal)

3:00pm  peanut butter and cheese crackers (200 cal)

4:00pm  2 hot dogs with ketchup and mustard (560 cal)

4:15pm  banana (100 cal)

9:00pm  2mg diazepam, 20mg quetiapine

9:00pm  chicken burrito with rice and veggies, half a cup of milk (800 cal)

11:20pm  bedtime... relaxation and mediation 

Fell asleep without CPAP and woke up a couple of times.  Got about 6 hours of sleep.

 

 

Apr 22

 

Even though I got what I thought was decent sleep last night, I feel EXTREMELY tired and fatigued this morning, it was so hard for me to get up.  I am feeling weak again and having a lot of difficulty with cognitive skills lately, especially holding a conversation.  Otherwise the other symptoms are the same.  Went to lunch with a friend of mine and went to play pool afterward, actually had a good time somewhat.  Trying to stay positive and think good thoughts.

 

134.3 lbs  22.9 BMI. 16.5% fat

 

2080 cal

 

9:30am  30mg Depakote

11:40am  Enteragam

11:50am  banana (100 cal)

1:50pm  Greek salad with chicken from JCI (600 cal)

5:45pm  vanilla shake (630 cal)

8:30pm  beef tacos with cheese, corn, beans and cup of milk (750 cal)

9:30pm  20mg quetiapine, 2mg diazepam

11:30pm  bedtime, got a new pillow (purple), kept waking many times and did not sleep well.  Got about 4 hours of sleep.

 

 

Apr 23

 

It was even more difficult for me to get up and moving today than yesterday.  I have ZERO energy and feel weak and tired.  More muscle loss and I felt very depressed and emotional today, crying and feeling hopeless.  It has to get better...

 

134.3 lbs, 22.9 BMI, 16.5% fat

 

2000 cal

 

9:30am  loose bm 

9:45am  30mg Depakote

10:00am  palpitations

12:00pm  bowl of cereal (500 cal)

4:00pm  chicken teriyaki bowl (700 cal)

9:30pm  chicken enchiladas with rice and beans (800 cal)

10:00pm  20mg quetiapine, 2mg diazepam

11:00pm bedtime, woke several times with CPAP and got about 4 hours of sleep

 

 

Apr 24

 

134.2 lbs  22.9 BMI  16.5% fat

 

2170 cal

 

9:00am  30mg Depakote

9:15am  loose bm

10:30am  bowl of cereal and large avocado (800 cal)

12:00pm  brain fog

4:20pm  chicken sandwich and fruit cup (570 cal)

8:30pm  orange chicken with steamed rice (800 cal)

9:30pm 20mg quetiapine, 2mg diazepam

11:00pm  bedtime, woke a few times.  Got about 4 1/2 hours of sleep

 

 

Apr 25

 

134.55 lbs,  23 BMI,  16.7% fat

 

2600 cal

 

9:00am  30mg Depakote

11:30am  2 eggs Benedict with avocado and grits  with a glass of orange juice (1000 cal)

4:00pm  grilled salmon with zucchini and salad with lemonade (900 cal)

8:00pm  grilled chicken with salad and rice with grilled veggies (700 cal)

10:00pm  20mg quetiapine, 2mg diazepam

12:00am  bedtime, woke 6 times, got between 4 and 5 hours of sleep.  Used the CPAP this time.

 

 

Apr 26

 

Heavy brain fog and depression today.

 

135.1 lbs  23.1 BMI  16.8% fat

 

2230 cal

 

9:30am  loose bm

9:45am  30mg Depakote

10:30am  oatmeal with bananas (600 cal)

1:30pm  grilled turkey sandwich with fries (1000 cal)

5:45pm  vanilla shake (630 cal)

8:30pm  beef tamales with rice and beans (900 cal)

11:30pm  20mg quetiapine, 2mg diazepam 

1:00am bedtime, tossed and turned and got maybe 2-3 hours of sleep. No CPAP.

 

 

Apr 27

 

134.85 lbs  23 BMI  16.7% fat

 

1600 cal

 

9:30am  30mg Depakote

1:00pm  2 eggs, pancakes, bacon, avocado and mixed fruit (1000 cal)

2:00pm  depression, crying 

3:00pm  felt dizzy, malaise, fatigue

8:30pm grilled chicken with fried rice and peas (600 cal)

9:15pm  20mg quetiapine, 2mg diazepam

12:30am  bedtime, woke several times and got about 4 hours of sleep.  Got up at 9am for the day.  No CPAP.  Tried a different comforter which was more comfortable and a new pillow I bought was too firm so I used my usual one.

 

 

Apr 28

 

Reducing the Depakote to 25mg today.  Been feeling extremely tired and out of it with brain fog and increasing tinnitus.

 

134.6 lbs  23 BMI  16.7% fat

 

2330 cal

 

9:30am  25mg Depakote

11:30am  large avocado, banana (400 cal)

12:30pm  mango pineapple smoothie (330 cal)

3:00pm  salmon filet sandwich with lettuce, cheese, tomato, sprouts and cup of tomato Florentine soup with an apple (800 cal)

6:00pm  depression, crying

7:00pm  4 slices of pizza—cheese, pepperoni , bell pepper (800 cal)

10:00pm  20mg quetiapine, 2mg diazepam 

11:30pm  bedtime... woke a few times and got about 4 1/2 hours of sleep