☼ LilBit: polypharmacy nightmare

[LilBit]

I have also been rethinking the Depakote taper and I am extremely certain that my aches and pains, weakness, weight loss, diarrhea, nausea, lack of appetite and liver issues are because of it. If possible and you think it is advisable, I would like to try 375mg.  I think the sooner I get off of it the better, from what I researched it can cause liver damage even when discontinued in more severe cases.  I know I am asking lots of questions and I apologize, I am just very concerned and want to make sure I am doing the tight thing.  Thanks 

[Altostrata]

18 hours ago, LilBit said:

....

I told her that I felt this was too much of a drop for me given my history and I would like to take 250mg Depakote ER with one and a half of the Depakote Sprinkles as you suggested for a total of 437.5mg, and she responded with saying that she could not endorse that because she doesn’t agree with only taking a partial dose of a sprinkles capsule and that I should be fine on 375mg.

 

At that point I just told her to send the prescription for Depakote Sprinkles to my pharmacy.  I didn’t want to argue with het on the phone but now I am not sure how to proceed.  I am going to probably have to find another psychiatrist in the middle of my disability case (again) which really stresses me out.  What are your thoughts on this?

....

 

The Sprinkles capsules are designed to be opened. There is no reason why you cannot take a partial dose. It sounds like your psychiatrist is not familiar with Depakote Sprinkles.

 

Next time you talk to her, you might not go over every single little detail of your taper. At that point, you might be down to 250mg Depakote anyway and no need to discuss opening a Sprinkles capsule.

 

If I were you, I would definitely take one 250mg Depakote ER (is that what your tablets are??) as part of your dose. This will make the change of part to Sprinkles easier.

 

From her strategies, I can see your psychiatrist is not familiar with any tapering methods.

 

17 hours ago, Songbird said:

It's good that you were able to get the Sprinkles.  You might only need the half capsule for a couple of weeks as a step down between 500mg and 375mg.

 

It looks like you've been taking the whole 500mg dose a.m.  Why does she want you to split the dose between a.m. and p.m.?

 

Yes, why a split dose? You really need to ask her reasoning when she comes up with this stuff.

 

It's up to you if you want to do this, Kev. It means you might have an adverse reaction to Depakote in the evening, too.

 

If you choose to divide the dose, I'd take the 250mg Depakote ER (??) tablet at the usual time in the morning, and the Sprinkles part of the dose in the evening. I have no idea what this will do.

 

4 hours ago, LilBit said:

Also one more question Alto... in your opinion am I still safe taking the Xifaxan?

 

I don't know, Kev. Xifaxan is a very expensive, powerful antibiotic that is used for some kinds of gut infections. Why does the gastroenterologist think this is best for you? Did he take a stool sample or get results from any other kind of test?

 

Did you discuss other types of treatment with the gastroenterologist? Did he explain why Xifaxan was the best choice? You need to get full information from your doctors, Kev. Sometimes it takes asking a lot of questions. You need to actively participate in your care.

 

Like all antibiotics, Xifaxan can be rough on your system. You should read up on Xifaxan side effects.

 

3 hours ago, LilBit said:

I have also been rethinking the Depakote taper and I am extremely certain that my aches and pains, weakness, weight loss, diarrhea, nausea, lack of appetite and liver issues are because of it. If possible and you think it is advisable, I would like to try 375mg.  I think the sooner I get off of it the better, from what I researched it can cause liver damage even when discontinued in more severe cases.  I know I am asking lots of questions and I apologize, I am just very concerned and want to make sure I am doing the tight thing.  Thanks 

 

Kev, I don't know what will happen if you decrease from 500mg Depakote ER (is that what you're taking??) to 375mg Depakote (250mg ER?? plus 125mg Sprinkles). This is a pretty big jump. You might get withdrawal symptoms.

 

How about splitting the difference? Reduce to 437.5mg Depakote by combining your 250mg tablet with Sprinkles for 5 days, then go down to 375mg.

 

Whether you want to split the dose into morning and evening is up to you.

 

If I were you, I might put off starting Xifaxan until you get down to 375mg Depakote, at least, or maybe until you are off Depakote altogether. If the nausea, etc. get better, there may be no reason for taking a chance on Xifaxan -- unless your gastroenterologist has a definite diagnosis instead of a guess.

 

You need to decide 1) what you want your first decrease to be; 2) if you want to take a morning and evening dose.

 

Please pick up your Depakote Sprinkles prescription right away.

 

Please confirm that your Depakote tablets are Depakote ER.

 

Please continue to keep notes as you change your dosing.

[ChessieCat]

The psychiatrist might be confusing the different forms of depakote.

 

Fromrxlist.com/depakote-sprinkle-capsules-drug

 

If you cannot swallow a sprinkle capsule whole, open it and sprinkle the medicine into a spoonful of pudding or applesauce. Swallow the mixture right away. Do not save it for later use.

 

Do not crush, chew, break, or open a delayed-release or extended-release tablet or capsule. Swallow it whole.

[LilBit]

 Sorry folks, I think I may have miscommunicated a bit, she is aware that Depakote sprinkles capsules are meant to be opened, what she was telling me is that she would advise against taking a partial dose of that with the ER.  Alto, you were right in that I should not be sharing every detail of my taper with her, as this just confuses things even more when doctors clearly don’t understand the proper way to taper. 

 

My gastroenterologist is just guessing at this point, based on a physical exam and symptoms and my previous labs.  It amazes me that he is not taking the Depakote into consideration.  You are right that I need to ask more questions, I get very foggy brained sometimes and forget to ask the really important ones.  I already took a Xifaxan this AM, can I stop now and wait until after I taper Depakote some more or is it too late?

 

Just to confirm (you may have missed it in my previous posts with all of my rambling 😊) yes I am taking Depakote ER.

 

I will be picking up the sprinkles this afternoon and be starting the taper tomorrow.  I will take all of the med in the AM and NOT dividing the dose.  I will start with 437.5mg.

 

Thank you for taking the time to help me.  I will do a better job of asking doctors questions so that I can clarify why they make the choices they do.  Getting here in the first place should have taught me this.

[LilBit]

I just contacted the gastroenterologist’s office and let them know that I would like to try tapering the Depakote first and see if my symptoms improve before trying Xifaxan, unless he is wanting to do an actual test to rule out any infection before starting it.  The labs he did show my ALT SGPT went from 63 to 61.  That is what I should have done in the first place but I guess I was scared because of how quickly my GI symptoms are progressing.  Right now it is constant nausea, diarrhea, lethargy, and weight loss.  On Friday I have the ultrasound to check the kidney and liver further. 

[Songbird]

1 hour ago, LilBit said:

 I will be picking up the sprinkles this afternoon and be starting the taper tomorrow.  I will take all of the med in the AM and NOT dividing the dose.  I will start with 437.5mg.

 

This sounds like a good plan.  I'm assuming you're going to combine one 250mg ER tablet and half a 125mg capsule of sprinkles.

 

44 minutes ago, LilBit said:

I just contacted the gastroenterologist’s office and let them know that I would like to try tapering the Depakote first and see if my symptoms improve before trying Xifaxan, unless he is wanting to do an actual test to rule out any infection before starting it.  

 

Sounds good.  Just throwing an antibiotic at a problem without confirming there is an actual infection doesn't seem a good idea to me.  It's good to see you taking charge of your health more.

[LilBit]

Thanks Songbird!  Yes I am combining the ER with the Sprinkles.   I am feeling pretty good so far this morning... I enjoy windows like these where I get out and walk the dogs, enjoy the beautiful outdoors and appreciate the small things.  I especially love it when that dreaded brain fog is not around!  🧠 

[Songbird]

Glad to hear you are having a window.  I don't have a dog, but going outdoors and walking dogs sounds great.  There are scientific studies showing that pets are good for our health.

[Altostrata]

How many days have you been taking 437.5mg Depakote?

[LilBit]

Nov 12

 

135.4 lbs.  1720 cal

 

6:20am  cramps/diarrhea 

7:20am  diarrhea

9:00am  nausea

9:30am  bowl of oatmeal (200 cal)

10:25am  500mg Depakote

1:30pm  baked potato soup with carrots (600 cal)

5:00pm  half of a medium turkey original from Schlotzsky’s (400 cal)

7:30pm  other half of sandwich (400 cal)

8:00pm  greek yogurt (120 cal)

10:40pm  bedtime

12:00am, 1:20am, 2:30am, 3:30am, 4:30am woke up, had hard time because I was wearing the holter monitor which was uncomfortable 

5:45am woke up for the day, got about 3 to 3 1/2 hours of sleep 

 

 

Nov 13

 

134.4 lbs   1690 cal

 

6:50am  loose bm/diarrhea 

9:00am  bowl of oatmeal and banana (420 cal)

9:30am  500mg Depakote

10:00am brain fog / cog fog

11:30am  nausea

2:00pm  nervousness / crying spells

2:40pm  chicken breast, white rice with carrots (400 cal)

2:50pm  noticed clicking in jaw when I chew

4:20pm small serving of bread pudding 

4:50pm abdominal pain right side 

5:15pm  smoked turkey sandwich (500 cal)

7:40pm  bowl of cereal (370 cal)

9:00pm  nausea

9:30pm  22.5mg Quetiapine, 2mg diazepam 

11:00pm  bedtime

1:00am, 2:00am woke up

4:10am  severe abdominal pain/diarrhea

5:00am woke up

5:40am woke up, got about 3 1/2 hrs of sleep

 

 

Nov 14

 

135 lbs  1895 cal

 

4:10am  severe pain/diarrhea

7:15am severe diarrhea

9:00am  bowl of oatmeal and banana (305 cal)

10:00am  550mg Xifaxan, 500mg Depakote

10:30am  diarrhea

11:00am nausea

11:30am  2 cups applesauce (180 cal)

12:00pm  gas

12:00pm  palpitations

1:00pm  gas

1:20pm  diarrhea

1:30pm  blueberry muffin (120 cal)

2:45pm  chicken, rice and carrots (400 cal)

3:20pm  strawberry greek yogurt (120 cal)

5:30pm  small smoked turkey breast sandwich (350 cal)

5:45pm  brain fog

7:30pm  grilled chicken sandwich (420 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

10:40pm bedtime

12:20am, 4:10am, 5:00am woke up

5:45 am woke for day, got about 4 hours of sleep

 

 

Nov 15

 

135 lbs  1890 cal

 

7:50am  cup of oatmeal and strawberry yogurt (320 cal)

10:30am  437.5mg Depakote 

11:45am  Chick fil A grilled chicken sandwich and fries (600 cal)

12:30pm  brain fog / derealization

2:30pm  fish sandwich (430 cal)

4:40pm  back pain

5:00pm  brain fog

6:00pm  back of neck itching

6:30pm  nausea

7:15pm  peach greek yogurt (120 cal)

8:10pm  6 oz of shoulder steak with 1/2 cup white rice (420 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

11:30pm bedtime

12:40am, 1:40am, 4:10am woke up

5:45am woke for day, got about 3 1/2 hours sleep

 

 

Nov 16

 

135 lbs, soft bm urine ok,  1960 cal

 

9:20am  437.5mg Depakote

11:00am  bowl of cereal and banana (400 cal)

12:45pm  nausea

2:00pm  grilled chicken sandwich (310 cal)

2:20pm  nausea, palpitations 

3:00pm  weakness

5:00pm  hungr buster jr from Dairy Queen (400 cal)

7:30pm  chicken breast with peas, rice and apple juice (850 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

11:30pm  bedtime

12:50am, 2:00am woke and had a hard time falling back asleep due to body pain on side I was lying on

5:20am woke up

6:20am woke up, got about 4 hours of sleep 

 

[LilBit]

2 hours ago, Altostrata said:

How many days have you been taking 437.5mg Depakote?

 

It’s been 3 days so far, I reduced it on the 15th... I need to update my signature. 

[wantrelief]

How wonderful you had a window, LilBit!  I hope more come your way soon. 

[Altostrata]

The reduction to 437.5mg is taking effect.

 

In 2 days, I'd reduce to 400mg Depakote. Please continue to take notes.

[LilBit]

I’m so glad the site is back online, was starting to worry!  🙂

 

Well just when I felt things were going well, I have nausea and had a bout of diarrhea a little while ago.  😔  I also did not get any sleep last night because my CPAP machine came in and it was the first night I tried using it, I know it is going to be an adjustment.  I have felt totally out of it today, and something occurred to me that I never thought of.  What if the prolonged sleep deprivation is causing some sort of hypercatabolic or hypermetabolic effect?  I continue to lose weight and body mass even though I am eating, and I’m sure my insomnia and stress are not helping.  My arms, hands and legs are even thinner and this concerns me.  I feel like no doctors are taking me seriously on this and I want to catch it early if it’s the case.

 

I do like the idea of continuing the Depakote taper.  The sooner I can get off

of this poison the better!  I’ll continue to provide updates as I go.  Thanks for the feedback.

[Altostrata]

My guess is your digestive problems and weight loss are because Depakote makes your liver unhappy.

 

Your liver will heal but there may be some ups and downs.

 

Lack of sleep tends to make people feel poorly but doesn't cause liver or kidney lesions. I don't believe your theory is valid.

[LilBit]

Yep, I am sure the Depakote is causing those problems.  It is very well known to cause liver damage as well as loss of appetite, weight loss and digestive issues.

 

I wasn’t thinking that lack of sleep causes kidney problems or liver lesions. However, there has been research which has shown that it affects hormone production in the body which can cause a hypercatabolic response where lean body mass is lost (BMR is increased).  It is not known exactly why this happens, but in the article I referenced below it caught my interest.

 

https://academic.oup.com/endo/article/149/6/2714/2454895

 

“Several authors propose chronic stress to be a main feature in the pathogenesis of the metabolic syndrome, which is associated with obesity, type 2 diabetes/insulin resistance, dyslipidemia, and hypertension (3, 5, 7). On the other hand, stressors like injury, infection, traumatic events, or prolonged sleep deprivation capably induce hypercatabolism and, therefore, may cause cachexia (2, 3, 10, 15–20). Such metabolic-driven wasting may result from pain, depression, or anxiety, causing malabsorption and maldigestion or morphological and functional alterations of the gastrointestinal system (3, 16, 21–24), and is typically seen during repeated inflammatory processes or during sepsis (2, 15–17).”

 

[Altostrata]

LilBit, please stop worrying and speculating and just get off the Depakote.

 

Feeling lousy and worrying can keep you from sleeping.

[LilBit]

You are right Alto, I guess I just needed someone to remind me of that!  

[LilBit]

Nov 17 

 

135.4 lbs 

 

9:45am   437.5mg Depakote

10:00am  large bowl of cereal with 1% milk (500 cal)

10:30am  slight brain fog

12:00pm  applesauce (180 cal)

2:00pm  Chicken fajita pita with egg roll (500 cal)

4:15pm  Small hamburger (380 cal)

6:30pm  plate of spaghetti with ground beef (400 cal)

8:45pm  greek yogurt - peach (120 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam

11:00pm  bedtime 

12:50am, 3:10am, 4:10am, 5:20am woke up, was awake mostly though out the night due to CPAP

7:20am got up for the day 

 

 

Nov 18

 

134.8 lbs.  Did not get any sleep last night, first night with the CPAP machine. 

 

9:45am  cup of oatmeal and yogurt (340 cal)

10:30am  437.5mg Depakote

11:00am  heavy brain fog

12:45pm  6in Rotisserie style chicken sandwich from Subway with lays baked sour cream and onion chips (500 cal)

2:20pm  snack pack vanilla pudding (130 cal)

2:30pm  diarrhea

 2:40pm  bowl of mac and cheese (400 cal)

2:50pm  feeling nauseous

4:00pm  applesauce (180 cal)

7:30pm  Cheddar’s grilled salmon with 2 butter croissants, mashed potatoes and corn (900 cal)

8:30pm  nausea/malaise 

9:30pm  22.5mg Quetiapine, 2mg diazepam

10:30pm  bedtime

12:30am, 1:50am, 3:10am, 4:30am woke up

6:10am got up for the day, got about 4 hours of sleep

 

 

Nov 19

 

136 lbs

 

8:30am  2 sausage egg and cheese burritos (600 cal)

9:30am  437.5mg Depakote

11:30am  applesauce (90 cal)

1:00pm  french bread with chicken angel hair alfredo (900 cal)

3:30pm  diarrhea/loose bm

5:00pm  peach greek yogurt (120 cal)

5:30pm  heart palpitations 

7:30pm  grilled chicken breast with rice and carrots (400 cal)

9:40pm  22.5mg Quetiapine, 2mg diazepam 

10:30pm  bedtime

1:10am, 2:15am, 5:30am, 6:20am woke up, had hard time falling asleep again with CPAP machine

7:00am  got up for the day, got about 3-4 hours of sleep

 

 

Nov 20

 

134.4 lbs 

Still noticing more wasting.  Waist is smaller, hands, legs and arms skinnier.

 

10:20am  437.5mg Depakote

10:30am  large bowl of cereal (400 cal)

12:30pm  abdominal cramps

12:45pm  banana (100 cal)

2:20pm  grilled chicken sandwich (310 cal)

4:50pm  applesauce (180 cal)

6:00pm  palpitations

7:00pm  meatballs with rice and gravy and apple juice (1000 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

10:30pm  bedtime - trying breathe right strips with CPAP

12:10am woke up and struggled to fall back asleep

1:30am  awake because of CPAP being uncomfortable and mask leaking, took off mask but had breathe right strip on

6:00am woke up

7:00am woke up for the day, got about 5 hours of sleep

 

 

[LilBit]

Today I started the 400mg of Depakote so I am hoping that will lessen the side effects I am feeling soon.  I’ve updated my drugs in my signature.  Feeling lots of neuro emotions of sadness and hopelessness, so that coupled with the weakness, fatigue, malaise, and body aches is making for a tough day.  Reminding myself that this is only temporary and will pass.

[bluepm]

You might try recovery international for coping skills you look up them  up on the internet😀

[LilBit]

Nov 21 

 

135.4 lbs  2310 cal

 

7:30am  loose bm

9:00am  large bowl of cereal (450 cal)

9:30am  400mg Depakote

11:00am  snack pack vanilla pudding (160 cal)

11:15am  tired/weak/nausea/brain fog

12:15pm  cheeseburger and grilled chicken snack wrap (600 cal)

2:45pm  Mott’s cinnamon applesauce 8oz (200 cal)

6:00pm  chicken enchiladas with refried beans and spanish rice (900 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

10:30pm  bedtime

Did not use the CPAP tonight, got about 4 hours of sleep 

 

Nov 22

 

136.4 lbs, 16.7% body fat, 23.2 BMI

Loose bm

1850 cal

 

7:15am  cinnamon roll with OJ (430 cal)

8:00am  nausea/weakness/malaise 

8:20am  explosive diarrhea 

9:30am  400mg Depakote

11:40am  banana (100 cal)

1:30pm  turkey, corn, peas, stuffing, cranberry sauce (800 cal)

2:40pm  severe diarrhea 

3:00pm  severe derealization/brain fog

5:00pm  turkey, mashed potatoes, roll, stuffing (400 cal)

6:00pm  brain fog cleared up a bit

9:30pm  22.5mg Quetiapine, 2mg diazepam 

10:00pm greek yogurt (120 cal)

11:00pm  bedtime

Tried using CPAP machine with the nasal pillows mask and woke several times with mouth and throat extremely dry, took off mask around 2:30am and poor sleep after, got up at 7:30 am, got about 3-4 hours of broken sleep.

 

[LilBit]

Nov 23

 

134.8 lbs (17% fat, 56% water, 23.3 BMI)

1960 cal

 

7:00am  discomfort in gut, like stomach is full or I was punched in the stomach

8:00am  loose bm/diarrhea 

9:30am  400mg Depakote

11:00am  egg and cheese breakfast sandwich (310 cal)

1:30pm  feeling extremely fatigued, DR/DP

2:15pm  grilled fish, cup of zucchini squash, small greek salad (800 cal)

5:00pm  lightheaded/abdominal discomfort/headache 

5:30pm  nausea

7:45pm  grilled chicken sandwich with fries (850 cal)

9:40pm 22.5mg Quetiapine , 2mg diazepam 

11:00pm  bedtime, woke up at 2:50am and removed cpap mask, got about 4 hours of sleep

 

 

Nov 24

 

134.8 lbs, 17% fat, 23.2 BMI

Loose bm

1950 cal

 

9:30am  sausage egg & cheese mcmuffin (450 cal)

9:30am  400mg Depakote

10:00am  brain fog/fatigue

12:20pm  indigestion

12:45pm  banana (100 cal)

2:00pm  2 cheese enchiladas with rice and refried beans (700 cal)

2:50pm  stomach cramps

4:15pm  applesauce (200 cal)

7:45pm  chicken breast with corn (500 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

11:00pm bedtime, woke around 1am, took a while to fall back asleep, woke again at 4:30am, got about 4 hours of sleep

[LilBit]

Nov 25

 

134.4 lbs

17% fat, 23.2 BMI, 56% water

Loose bm, Extremely tired and fatigued, weakness

2060 cal

 

8:40am  large bowl of cereal (450 cal)

9:00am  jittery vision

10:20am  400mg Depakote 

11:20am  banana (100 cal)

12:20pm  nausea

1:30pm  tapioca pudding (150 cal)

3:00pm  bbq chicken breast, potato salad, 2 slices of bread (700 cal)

4:00pm  brain fog

6:00pm  crying spell/confusion

6:30pm  tuna salad sandwich from Panera (660 cal)

10:00pm  22.5mg Quetiapine, 2mg diazepam 

10:30pm  bedtime

Woke up 3 times, around 12:00am, 1:45am and 3:30am, got about 4 1/2 hours of sleep

 

Nov 26

 

135 lbs - 16.3% fat, 23.0 BMI, 56% water, 106 lbs muscle

Small green BM

All day today weakness and fatigue.  

2000 cal

 

8:00am  egg white delight mcmuffin (280 cal)

8:30am  banana (90 cal)

9:30am  400mg Depakote

1:20pm  chicken fajita pita and 2 egg rolls (660 cal)

5:10pm  applesauce (200 cal)

7:00pm  turkey bacon club sandwich (770 cal)

9:45pm  22.5mg Quetiapine, 2mg diazepam 

10:30pm  bedtime

Tried the CPAP again, woke around 2:15and removed it, had hard time falling back asleep and then woke at 4:45am.  Dozed off for a bit and woke again, got up at 6am.  Got about 4 hours of sleep.

[LilBit]

I am just wondering.... for the 400mg Depakote dosage what I have been doing is combining a 250mg ER tablet with a 125mg Sprinkles capsule and 25mg of sprinkles in a gelatin capsule I made (by taking one sprinkles capsule and dividing the weight of the content by 5 and filling the gelatin capsules) and taking all in the AM.  Is this the correct way to do

this?  I know normally the sprinkles aren’t meant to be saved once the capsule is opened.

[Songbird]

Do you mean you are making five capsules of 25mg each from one 125mg capsule, and using one each day?

[LilBit]

1 hour ago, Songbird said:

Do you mean you are making five capsules of 25mg each from one 125mg capsule, and using one each day?

 

Yes that’s correct, sorry if I was a little confusing.

 

 

Guys this is not good.  I am weak, tired, get chills, lethargic, constantly nauseous, absolutely no appetite, losing fat like crazy and my eyes feel like they are burning and are sunken, arms, hands, legs—everything—is becoming skinny, almost cachectic-like.  Still not sleeping more than 1-2 hours at a time.  This has been going on for the past couple of months but has gotten significantly worse over the past week, to the point where every day it is much worse than the day before.  Also what’s weird is my skin is really dry and looks like I am aging and I have dandruff which I have never had in my life.  

 

I am growing really concerned about this because I feel like my prolonged sleep deprivation is behind this... it’s like my metabolism has been kicked into super overdrive or something.  Trying to relax and keep calm!  😬  I have an appointment with an endocrinologist soon since I have had everything else under the sun checked.  I am just hoping my sleep starts to improve somewhat very soon.  I am trying to give the CPAP a chance.

[Songbird]

I'm a bit confused about your notes.  You've been using a CPAP machine for the first four hours or so, then removing it.  You report about four hours sleep.  Are you getting sleep with the CPAP machine?  Or after you've removed it?

[LilBit]

At first I couldn’t fall asleep with it on and had to take it off to get sleep.  Now it seems like I can fall asleep but still wake up!  Last night I tried something different and kept it on even when I woke up and tried to fall back asleep but couldn’t so I took it off, but still couldn’t fall back asleep.  I am trying to get better about keeping it on even when I wake in the hopes that I get used to it and my sleep improves, if sleep apnea is indeed why I am having so many problems.

[LilBit]

Songbird and Alto, 

 

Just wanted to give a quick update... got the results from my holter monitor reading and also the echocardiogram and the cardiologist found nothing at all, said there was no sign of Afib or anything serious.  Guess all of the palpitations are adverse reaction / withdrawal related.  🙄

 

So here’s the deal:  I decided to stop using the CPAP for now because I think it’s a bad idea while I am coming off of the Depakote and exacerbating my already extreme trouble with sleeping.  I consulted with my sleep specialist/neurologist about this and he said that’s fine if I want to try to sleep without it for now so at least I get some sleep rather than adding something new to the mix that is going to increase my anxiety.  I don’t particularly care for this doctor either because he really seems to want to keep pushing Seroquel or something else for me to take to sleep, and I firmly reminded him that drugs are what got me here in the first place and I am not interested in band-aids to fix a problem that are not going to work anyway.  I want to know why I am having the problem and fix it, not slap a band aid on it.

 

I started taking Imodium to see if it will help with the loose stools until I can get off of the Depakote, and see if it is still a problem then, because I was concerned about malabsorption/malnutrition.  I am not sure if this is a good idea because 1) I don’t want to hurt my poor liver any more than it is already, and 2) I don’t want it to mask any withdrawal symptoms.  What do you guys think?  

 

Also, do you think it is ok if I reduce to 375mg of the Depakote or should I wait another few days based on my symptom pattern?  

[LilBit]

Nov 27

 

134.4 lbs (17% fat, 22.9 BMI, 105.8 lbs muscle, 55.6% water)

loose BM

2400 cal

 

Brain fog/cog fog all day.  For some reason it feels different than the brain fog I used to feel, which was a medicated feeling.  This is more of an extremely exhausted and disoriented type feeling.  Still noticing wasting.

 

9:30am  400mg Depakote

10:00am  large bowl of cereal (450 cal)

11:30am  nausea

2:00pm  diarrhea

2:40pm  chicken salad sandwich (750 cal)

3:20pm  gas/stomach discomfort 

6:00pm  banana (90 cal)

6:15pm  blueberry greek yogurt (120 cal)

8:00pm  Casa Ole chicken enchilada dinner (1000 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam 

11:00pm  bedtime, used cpap and got about 3 hours of broken sleep

 

 

Nov 28

 

134 lbs (17% fat, 105.4 lbs muscle, 22.9 BMI)

1900 cal

 

9:40am  400mg Depakote

10:00am  bowl of cereal (400 cal)

10:50am  nausea, dizziness after walking

1:30pm  orange chicken with steamed rice (800 cal)

5:30pm  activia blueberry yogurt (90 cal)

8:00pm  meatloaf with broccoli and mashed potatoes (600 cal)

9:40pm  22.5mg Quetiapine and 2mg diazepam

10:00pm  bedtime, used CPAP and got maybe 1 hour of sleep somewhere between 3 and 5am. 

 

 

Nov 29 

 

133.8 lbs (17.7% fat, 22.8 BMI, 104.9 lbs muscle)

1980 cal

 

9:30am  400mg Depakote

10:50am  blueberry greek yogurt (120 cal)

11:45am  palpitations

12:10pm  quarter pounder with cheese (510 cal)

12:50pm  banana (90 cal)

2:30pm  grilled chicken sandwich (310 cal)

5:20pm  applesauce (200 cal)

6:00pm  muscle soreness/pains and weakness 

7:45pm  lasagna and garlic bread (750 cal)

9:45pm  22.5mg Quetiapine, 2mg diazepam, loperamide 2mg

11:00pm bedtime.  Did not use CPAP this time.  Woke up twice and got about 5 hours of sleep.

 

[Songbird]

Five hours of sleep sounds quite good.  I'm glad that your heart checked out okay.  It's good to hear that you're standing up for yourself with doctors and avoiding going for more rides on the med merry-go-round.

 

I'd be very careful with the loperamide, because it's adding another drug into the equation, and putting more burden on your liver.  It can potentially interact with quetiapine.  If you need to use it stick to a low dose.  Try the BRAT diet - bananas, rice, etc., low fibre foods.

[Altostrata]

On 11/28/2018 at 7:38 AM, LilBit said:

I am just wondering.... for the 400mg Depakote dosage what I have been doing is combining a 250mg ER tablet with a 125mg Sprinkles capsule and 25mg of sprinkles in a gelatin capsule I made (by taking one sprinkles capsule and dividing the weight of the content by 5 and filling the gelatin capsules) and taking all in the AM.  Is this the correct way to do

this?  I know normally the sprinkles aren’t meant to be saved once the capsule is opened.

 

Do you put the Sprinkles directly into gelatin capsules? That should be okay.

 

Once you mix it with food, you can't store it: "The drug/food mixture should be swallowed immediately (avoid chewing) and not stored for future use."

 

18 hours ago, LilBit said:

Songbird and Alto, 

 

Just wanted to give a quick update... got the results from my holter monitor reading and also the echocardiogram and the cardiologist found nothing at all, said there was no sign of Afib or anything serious.  Guess all of the palpitations are adverse reaction / withdrawal related.  🙄

 

So here’s the deal:  I decided to stop using the CPAP for now because I think it’s a bad idea while I am coming off of the Depakote and exacerbating my already extreme trouble with sleeping.  I consulted with my sleep specialist/neurologist about this and he said that’s fine if I want to try to sleep without it for now so at least I get some sleep rather than adding something new to the mix that is going to increase my anxiety.  I don’t particularly care for this doctor either because he really seems to want to keep pushing Seroquel or something else for me to take to sleep, and I firmly reminded him that drugs are what got me here in the first place and I am not interested in band-aids to fix a problem that are not going to work anyway.  I want to know why I am having the problem and fix it, not slap a band aid on it.

 

I started taking Imodium to see if it will help with the loose stools until I can get off of the Depakote, and see if it is still a problem then, because I was concerned about malabsorption/malnutrition.  I am not sure if this is a good idea because 1) I don’t want to hurt my poor liver any more than it is already, and 2) I don’t want it to mask any withdrawal symptoms.  What do you guys think?  

 

Also, do you think it is ok if I reduce to 375mg of the Depakote or should I wait another few days based on my symptom pattern?  

 

It sounds like the CPAP machine was contributing to your lack of sleep.

 

While lack of sleep might feel awful, my guess is your weight loss, metabolism dysfunction, etc. is due to the adverse effects of the Depakote and the bruises on your kidneys and liver.

 

Since you've reduced Depakote, have your symptoms gotten better, worse, or stayed the same after you take Depakote in the morning?

 

Yes, I would reduce to 375mg Depakote. Please let us know how you're doing.

[LilBit]

Alto, yes I have been putting the sprinkles directly into the gelatin capsules.  I will decrease the dose to 375mg starting tomorrow.  My symptoms have pretty much stayed the same in terms of the bowel movements.  I took Imodium and that seemed to help but I noticed an increase in abdominal discomfort.   The cachexia-like symptoms continue to get worse by the day.  This morning it was extreme fatigue, warmth throughout my body and feeling slightly chilly, muscle and body aches throughout my body, and noticing more fat loss.  What’s also disturbing are the changes in my skin as well, like I am aging.  I’ll continue to post updates and my journal as well.  Thanks for the support, I am trying to stay strong. 🙏

 

 

[Altostrata]

Those symptoms are not from reducing Depakote, they existed before.

 

It sounds like you might have vitamin deficiencies as well.

 

If I were you, I'd go to an infectious disease specialist to rule out parasites, etc.

[LilBit]

Yeah, definitely not from reducing the Depakote.  I suspect most of it is from sleep deprivation, which I am not sure how is going to resolve.  I noticed the beginning of it a little over 2 months ago.  Now I get weak when I stand too long or walk.  Infectious disease specialist sounds like a good idea, one doctor I haven’t been to yet.