☼ LilBit: polypharmacy nightmare

[DMV64]

Hi Lilbit...just stopping by to say hello and offer support. I hope you are feeling better today. : )

-DMV

[LilBit]

Nov 30

 

134.4 lbs (16% fat, 22.9 BMI, 106.9 lbs muscle, 5.7 lbs bone, 56.9 % water)

2300 cal

 

7:30am  loose bm

7:40am  loperamide 2mg

9:00am  bowl of cereal and blueberry muffin (700 cal)

9:45am  400mg Depakote

2:00pm  omelette with cheddar cheese, mushrooms, tomatoes, avocado and fruit (800 cal)

3:00pm  applesauce (200 cal)

6:00pm  abdominal pain

8:00pm  roast rice and gravy (600 cal)

9:40pm  22.5mg Quetiapine, 2mg diazepam

11:30pm bedtime, woke up almost every hour and got about 4 hours fragmented sleep

 

 

Dec 1

 

Warm body, sore muscles, no appetite, slight weight loss, weakness, abdominal discomfort.  More fat loss.

 

134.2 lbs (16.2% fat, 22.9 BMI, 56.9% water, 106.9 lbs muscle, 5.9 lbs bone)

1930 cal

 

7:00am  Bm more normal

8:00am  bowl of cereal and blueberry muffin (750 cal)

9:00am  extremely heavy brain fog

9:15am  400mg Depakote

10:00am  strawberry activia yogurt (90 cal)

2:45pm  hamburger (550 cal)

3:00pm  gas/abdominal discomfort

5:00pm  granny smith apple (70 cal)

7:30pm  grilled chicken sandwich (470 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:30pm bedtime

Woke up 3 times and got 4 1/2 to 5 hours of broken sleep

 

 

 

Dec 2

 

134.2 lbs (17% fat, 22.9 BMI, 105.9 lbs muscle, 56% water)

Slightly loose bm

1950 cal

 

Increased brain fog today and I just feel weak/tired.

 

9:40am  375mg Depakote, 2mg loperamide

10:00am  strawberry activia yogurt (90 cal)

10:30am  bacon egg bites from Starbucks (310 cal)

12:30pm  nausea/weakness 

1:00pm  banana (90 cal)

2:15pm  chicken fried steak sandwich (760 cal)

7:00pm  large beef, cheese and bean burrito (700 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:20pm  bedtime

Tossed and turned, woke up around 1:30, then at 4:20am and couldn’t fall back asleep.  Got about 4 hours of broken sleep.  

 

 

[LilBit]

21 hours ago, DMV64 said:

Hi Lilbit...just stopping by to say hello and offer support. I hope you are feeling better today. : )

-DMV

 

I wish I was, but thank you for your support, it is very much appreciated!

[LilBit]

Today I am not feeling well at all, this is a completely new feeling altogether.  Nervousness combined with fatigue and I feel like I am in complete anorexia mode now.  I have scheduled appointments with a new GP, endocrinologist, GI doc, infectious disease doc and waiting to hear back from a new neurologist.  This is spiraling out of control and today I have lost more fat, now at 15.3% and 133.4 lbs. I am now afraid this is becoming life threatening. 

 

On a side note, are we definitely sure it is ok to combine Depakote ER with sprinkles?  I know tapering didn’t cause this but what if something was triggered by the change from all extended release to extended release combined with immediate?  Just grasping at straws here.

 

Also, I stopped the Imodium because I had a loose movement this morning so it really doesn’t seem to be helping.

[Altostrata]

Yes, you can combine Depakote ER with Sprinkles.

 

It sounds like you are having a bit of withdrawal from reducing Depakote.

 

How long does this symptom pattern last in a day? Is it all day long? Does it subside in the evening?

3 hours ago, LilBit said:

Nervousness combined with fatigue....

 

It looks like you eat a lot of fast food? This is not so good for you, but if it's all you can eat, okay for now. Do you like ice cream? Since you're losing weight, you have permission to eat ice cream and put butter on everything. If you're lactose-intolerant, disregard this, but eat high-calorie foods that appeal to you.

[DMV64]

3 hours ago, LilBit said:

I wish I was

Sorry to hear you are not. I had a terrible morning myself but it got a little better as the day went on. This morning I really felt like I was coming out of my skin.

[LilBit]

Thanks Alto, this is a new symptom so I’ll keep an eye on it.  In the past I have always felt better in the evening.  Now it is more constant, all the time.  I used to like ice cream, I used to like a LOT of things.  Now it’s like the thought of eating anything makes me sick.  I don’t know why, this just started today.  I do have high LDL cholesterol so I try to eat as healthy as I am able, but otherwise am definitely open to eating higher calorie foods.  I am having a hard time cramming in all of the calories in one day because I can’t eat big meals anymore.  I feel like I would have to eat over 2500 calories a day minimum to stop losing weight (assuming I don’t have a metabolic dysfunction or malabsorption problem), and I am struggling to eat what I am as it is.  Thanks for your help and for following my posts.  

[LilBit]

Dec 3

 

133.6 lbs  (15.6% fat, 22.8 BMI, 106.9 lbs muscle, 56% water)

2130 cal

 

Today I feel like I have no appetite at all whatsoever, like complete anorexia.  I also am noticing a quick drop in body fat.  I am feeling extremely exhausted and weak. I have appointments scheduled with a new GP, neurologist, endocrinologist and an infectious disease doctor.  Trying to figure out what is going on with my sleep and weight and other symptoms because I now fear that they are becoming life threatening.

 

7:15am  loose bm

10:00am 375mg Depakote

10:30am cereal and muffin (750 cal)

1:00pm  jittery, shaky, nervous

1:40pm  blueberry yogurt (90 cal)

2:40pm  smoked turkey sandwich (500 cal)

4:12pm blueberry yogurt (90 cal)

4:30pm  nausea

7:20pm  spaghetti w/ meat sauce (700 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:30pm bedtime

Fragmented sleep.  Woke about every hour and a half, 4 times, for a total of about 3 1/2 to 4 hours of interrupted sleep.

 

 

Dec 4

 

133.6 lbs (16.3% fat, 56.3% water, 22.8 BMI, 106.5 lbs muscle, 5.7 lbs bone)

 

Loose BM

2450 cal

 

9:45am  Depakote 375mg

9:45am  bowl of cereal, banana and blueberry muffin (850 cal)

11:00am  pain in left arm

2:40pm  chopped beef sandwich with baked beans (1000 cal)

5:00pm  weak, tired, sad

7:30pm  chicken fried rice (600 cal)

9:40pm  22.5mg Quetiapine, 2mg Diazepam 

10:30pm bedtime

Woke up about 6 times and got up at 6, got about 4 1/2 hours of broken skeep

 

Dec 5

 

135 lbs (16.7% fat, 56.3% water, 23.1 BMI, 106 lbs muscle, 5.7 lbs bone)

Loose bm

2440 cal

 

More weight loss around neck and collarbone starting to become visible.   The sleeplessness and what appears to he wasting syndrome are the prominent problems that I am very concerned with now.

 

9:40am  375mg Depakote

9:50am  bowl of cereal, banana and OJ (660 cal)

12:00pm  diarrhea

12:30pm  large vanilla shake (820 cal)

2:10pm  turkey bacon avocado half sandwich with small apple (420 cal)

7:15pm  chicken sandwich with cheese (540 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:40pm  bedtime, woke 4 times, up at 5am.  No CPAP.  Got 4 hours of broken up sleep.

 

 

Dec 6

 

134.4 lbs (17.5 % fat, 55.6% water, 23 BMI, 105.4 lbs muscle, 5.5 lbs bone)

 

Small loose bm

2110 cal

 

7:45am  3 scrambled eggs, 2 biscuits and OJ (800 cal)

1:20pm  crispy chicken sandwich (510 cal)

1:40pm  375mg Depakote (forgot to take in the morning)

5:00pm  banana (100 cal)

7:00pm  salmon with orzo pasta (700 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:20pm  bedtime - used CPAP and woke 4 times, woke at 4am and took mask off, couldn’t fall back asleep - got about 4 hours of interrupted sleep

 

[LilBit]

Saw the neurologist today, he misplaced my MRI CD I previously brought and says that I should get a second opinion as there is only so much he is able to do within his ability.  For the fragmented sleep, what he recommends is treatment of the sleep apnea with CPAP since “we are only able to treat what we can see”.  Also he feels the depression should be treated which could be contributing to the insomnia.  I mentioned my drug history and how I feel the adverse reaction to the Paxil is causing this since after that, the Restoril stopped working and I have lost the ability to get sleepy or stay asleep .  I have an appointment with another neurologist who is a sleep specialist affiliated with St. Luke’s and Baylor on 12/17.

 

The endocrinologist I saw today wants to run several labs to check for metabolic dysfunction, hormone levels, and any possible causes for the symptoms I am having especially the wasting/weight loss.  He was extremely sympathetic and said that basically we are looking for a needle in a haystack at this point.  The fact that the drugs totally disrupted my sleep and caused severe sleep deprivation for over 5 months is something they have never heard of before.  He recommended that I check with a neurologist who works at a college and does research since that would be my best bet for rare conditions such as mine. He knows at this point it is going to take more than a private doctor who deals with run of the mill issues to fix this.  Luckily, I already have an appointment scheduled but at this point I have even considered Mayo Clinic as an option.  I am really becoming desperate because it is getting worse by the day and I feel like I have tried everything.  I feel like I don’t have much time left.

 

The infectious disease doctor is also wanting several labs done so that they can rule out anything from that side. He was so concerned about the weight loss that he referred me to a gastroenterologist the next day, and he is having me do a colonoscopy next week.  Thanks for that suggestion Alto.

 

I have been suffering 6 months on very little sleep and it is starting to damage my brain and body now.  At this point whether it was caused by an adverse reaction or withdrawal doesn’t even matter anymore.  I still plan on tapering the meds but I am falling apart mentally, physically and the thought of watching myself deteriorate when I was perfectly healthy (just trouble sleeping) is terrifying.  I don’t even know who I am anymore and feel like I have hit rock bottom. All of these doctors are trying to help but are puzzled and have no clue what to do.

 

I am tired, sad, lost, scared, confused, angry, weak, and exhausted.  Trying my best but it’s hard when you don’t even know if you are going to survive long enough to find a treatment or solution.  I feel like I have hit rock bottom.

[Songbird]

I'm sorry to hear you're feeling so bad.  It does seem like something else might be going on in addition to withdrawal, because of the severe weight loss.  Have you had tests done for parasites, as Alto suggested?

[Carmie]

Hi Kev, 

 

I’m so sorry you feel like you’ve hit rock bottom. I’ve been there many times too. I really am sorry about what you’re going through. 

 

I’m really struggling tonight to read n write as brain fog is so severe but I’ll get back to you tomorrow some time when my brain fog isn’t so bad. 

 

Just know we can win this fight, there will be lots of lows but we will get there in the end. I just had over three months of mainly waves but the windows are coming again now. 

 

We will win this fight!! It may be hour by hour or even minute by minute but we will get there in the end. This roller coaster ride will really come to an end one day. I know it doesn’t feel like that now, this journey really is one of the most awful things we will go through in our whole lives but we can do this. 

 

Chat soon again when my brain comes back down to earth🌏.

 

Sending hugs🤗

 

 

 

 

 

 

 

 

 

[Carmie]

Hi Kev, 

 

Just checking in again to see how you’re doing. 

 

Sendng hugs🤗

[Fightingawar]

@LilBit can I ask you how much weight you have lost in what amount of time? 

[DMV64]

On 12/8/2018 at 4:56 AM, Carmie said:

We will win this fight!!

Yes! Yes! I had a horrible day two days ago. And yesterday and today I feel almost normal. 

[Altostrata]

Have your symptoms gotten worse, stayed the same, or gotten better since you reduced Depakote to 375mg?

 

As we discussed before, you are probably having a bit of Depakote withdrawal, but not too bad as near as I can tell. When did you reduce to 375mg?

 

I see you are counting your calories. You're losing weight on your current intake, why don't you double what you eat?

 

It looks like you mostly eat fast food, is that correct? That tends to contain a lot of salt and oil.

 

On 12/7/2018 at 2:47 PM, LilBit said:

Saw the neurologist today, he misplaced my MRI CD I previously brought

 

That is incompetent. I would contest his bill.

 

Do not expect any of your doctors to understand you have an adverse reaction to drugs. Rather, I would tell them you have kidney and liver damage that is probably drug-induced.

 

It is unlikely you have a diagnosable neurological condition, that is probably going to be a dead end.

[LilBit]

Dec 7

 

134.4 lbs  (16.9% fat, 56% water, 23 BMI, 105.6 lbs muscle, 5.5 lbs bone)

 

Loose, small bm

2400 cal

 

7:30am  palpitations

9:00am  bowl of cereal and banana (550 cal)

9:15am  375mg Depakote

9:20am  palpitations

9:50am  4 mini donuts (300 cal)

12:20pm  applesauce  (200 cal)

2:40pm  smoked turkey sandwich (500 cal)

7:00pm  Apple juice (240 cal)

8:00pm  chicken breast with macaroni and cheese (600 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:30pm bedtime

Was able to keep the cpap mask on for about an hour, then took off.  Woke about 5 times throughout the night and woke for the morning at 6:30am.  Got about 5 to 5 1/2 hours of interrupted sleep.

 

 

Dec 8

 

134.4 lbs (16.2% fat, 56.6% water, 23 BMI, 107 lbs muscle, 5.7 lbs bone)

 

Loose, light colored floating bm

2310 cal

 

9:40am  375mg Depakote

10:20am  large bowl of honey nut cheerios with banana and OJ (770 cal)

12:45pm  diarrhea

2:30pm  whataburger grilled chicken sandwich and small vanilla shake (840 cal)

4:00pm  nausea

5:30pm  grilled salmon with veggies (700 cal)

11:45pm  22.5mg Quetiapine, 2mg diazepam

12:30am  bedtime, got about 2-3 hours of sleep

 

 

Dec 9

 

134 lbs (17% fat, 56% water, 22.9 BMI, 5.6 lbs bone, 106 lbs muscle)

 

Soft bm, normal color

2450 cal

 

9:40am  375mg Depakote

10:00am  large bowl of oatmeal (480 cal)

1:20pm  white rice with green beans, cream corn and beef roast (500 cal)

1:50pm  slice of yellow cake with cream cheese frosting (500 cal)

4:10pm  diarrhea

5:00pm  applesauce and banana (300 cal)

7:30pm  turkey bacon bravo sandwich (670 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam

10:40pm  bedtime, tried going to bed with cpap and woke at 1:30am, took it off and fell back asleep. Woke 3 more times after that and got up at 5:50am. Got about 4 hours of broken up sleep.

 

[LilBit]

On 12/8/2018 at 3:06 AM, Songbird said:

I'm sorry to hear you're feeling so bad.  It does seem like something else might be going on in addition to withdrawal, because of the severe weight loss.  Have you had tests done for parasites, as Alto suggested?

 

Thank you Songbird. 🙂 Yes I am having tests done by an infectious disease doctor so we will see what comes back.  Also having a colonoscopy on Thursday.  Checking every possible thing we can think of.

[LilBit]

On 12/8/2018 at 9:52 PM, Carmie said:

Hi Kev, 

 

Just checking in again to see how you’re doing. 

 

Sendng hugs🤗

 

Thanks for checking on me Carmie!  Hugs back 🤗  Unfortunately I am doing about the same, maybe even a little worse.  It is hard for me to write as of late due to having trouble focusing and not having energy, but I try to keep everyone who is following this updated on my progress.  I am scared, as I add the pieces of the puzzle together it is starting to look more like I had an adverse reaction to the combination of medications I was on which led me here.  I think the insomnia caused by it snowballed into where I am now.  Some of it is probably also withdrawals from what I was on and side effects from what I am still on.  All of it is leaving me feeling like I am literally hanging on by a thread.  I look in the mirror and don’t even recognize who I see.  Trying to hang in there.

[LilBit]

On 12/9/2018 at 1:11 PM, Fightingawar said:

@LilBit can I ask you how much weight you have lost in what amount of time? 

 

Sure, I went from 142 lbs in July to 134 lbs now.  It doesn’t sound like a lot, but I am noticeably thinner and the majority of it was lost in the last 2 months.

[LilBit]

Alto,

 

I reduced to 375mg Depakote (250mg ER plus 125 Sprinkles) on the 2nd so about a week ago.  It seems like my symptoms have been the same, maybe a little worse, since the drop.  It could be a combination of things causing that though.

 

I am struggling to eat what I am as it is with nausea, no appetite, no hunger and early satiety.  I have been force-feeding myself several times per day since August.   Do you have any suggestions that might help me increase caloric intake?  I have even been sneaking in shakes and my endocrinologist recommended Ensure but it makes me sick (diarrhea), along with many other foods I have tried.

 

I know the neurologist may be a dead end, but at this point I feel like my life is on the line and must try at least.  I honestly believe what happened is the Restoril weakened the blood brain barrier, allowing the Lexapro/Effexor/Paxil to cause damage to the hypothalamus.  This would certainly explain the change in sleep/appetite/mood/low testosterone/thirst.  Combine that with the withdrawals from the polypharmacy and it’s no wonder I’m in the shape I am in.  The only problem is, if that is the case there is no treatment as far as I know anyway, so some would argue why even bother?

 

I look thinner, pale, sickly with sunken eyes that have dark circles around them and what appears to be the beginnings of cachexia. I feel increasingly fatigued and weak, and aches in parts of my body.  I just pray someone is able to tell me something or point me in the right direction.  

[LilBit]

I posted this a while back but someone else seemed to be going through the same exact thing and I am not sure what happened to them.  The only difference is they took Seroquel and I took Paxil.  It’s a shot in the dark but the similarities are striking.  Here is the thread:

 

Homeostasis in the brain disrupted by Seroquel

[Songbird]

Do you eat any eggs?  They contain lots of protein and heaps of nutrients.

[Shep]

Lilbit, I'm recovering from having a setback over the weekend from inadvertently eating MSG.  I just wanted to mention that because some of your foods are processed and sometimes processed food does contain MSG and also, food from restaurants. There are other additives in processed foods that can be problematic to folks going through withdrawal. 

 

I had been on an elimination diet that had zero processed foods for about 4 years, so I got hit hard with this. My system is not able to process it at all. 

 

MSG and other processed food issues are something most doctors really don't pay attention to. You may want to go to a diet that removes as much processed food as possible. I cook up meat and don't add anything to it. Simply freeze it in individual packages and then can add it to a salad. And then I usually have some fresh fruit and unsweetened coconut milk. Very simple, clean meals.

 

You can take plain yogurt and add fresh fruit to it instead of eating yogurt that has a lot of added flavors and chemicals. Instead of canned soups (which are notorious for having MSG), you could make with vegetables, meat, and soup stock (be careful that the soup stock doesn't contain MSG - I get my soup stock at the local farmer's market that comes to my city every week).  

 

Songbird's suggestions for eggs is also great. You can make them without adding anything or controlling what you do add. 

 

I know that weight loss is a key issue for you, and I certainly don't want you to feel limited in what you eat, but I did want to mention this in case it's helpful. 

Edited December 11, 2018 by Shep
added information

[LilBit]

I do like eggs Songbird .... and thanks for that information Shep.  I tried an elimination diet at the beginning of all of this and found it difficult to determine what was causing my symptoms.  The weirdest thing is now I have absolutely NO desire to eat and when I do I feel full right away.  It’s like my brain is telling my body it doesn’t need food.  It’s not physical because I had a gastric emptying study and it came back normal.  

 

I feel like my body is in shut down mode.  Not truly sleeping, not wanting to eat, drink, no joy, losing weight, cog fog, and today sonething new to add to the list... tooth decay.  One of my front bottom teeth is wiggly and the one next to it is showing signs of decay.  The tops of all my bottom teeth are flat and worn like I have been grinding them.  Maybe from the low vitamin D which may be because of the Depakote?  Who knows.  

[Tanha]

On 8/27/2018 at 7:07 PM, Altostrata said:

Why are you taking quetiapine, doxepin, and melatonin at the same time? How are you sleeping since you started doxepin?

 

What does the Depakote do for you? Why did you quite diazepam when you did?

 

Was doxepin added to substitute for diazepam?

 

What does your current psychiatrist think of this mix of drugs?

 

Taking too many "brakes" also seems to be my Problem 

hence paradoxical symptoms are expectable. 

 

My polytox combi which already gives me seriously low bloodpressure:

16 mg dose mirtazapine 

250 mg quetiapine

5 mg diazepam 

 

does anyone have insights into the pharmakokinetics of quetiapine and mirtazapin?

 

or

 

slowly tapering quetiapine at lower doses:

is it true that the lower the dosage of quetiapine the more sedating it is? 

Does more sedating also mean that it has more bad effect on low bloodpressure?

 

all my medications together make my bloodpressure seriously low.

 

do I have to worry that this sideeffects gets worse the lower the dose of quetiapine gets?

 

because that is the case with mirtazapin.

[LilBit]

Dec 10

 

134.4 lbs (17% fat, 56% water, 23 BMI, 5.6 lbs bone)

 

1300 cal

 

Had the gastric emptying study this morning so had to fast for it.

 

9:00am  small serving of oatmeal- part of the study (150 cal)

11:15am  375mg Depakote

12:30pm  diarrhea

12:45pm  bowl of cereal (400 cal)

3:20pm  banana (100 cal)

7:00pm  applesauce (200 cal)

8:00pm  grilled chicken sandwich (450 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam, .6mg Melatonin 

10:15pm  bedtime, forgot to set sleep app but I know I woke at 12:50am and took off cpap mask.  Then woke at 5 and again at 6.  Not sure how much sleep I got but maybe 3-4 hours.

 

 

Dec 11 

 

133.2 lbs  (17% fat, 56% water, 22.8 BMI, 105 lbs muscle, 5.5 lbs bone)

 

2200 cal

 

8:45am  Diarrhea

10:00am  375mg Depakote

11:20am  small vanilla shake (400 cal)

12:45pm  large grilled chicken salad (500 cal)

4:00pm  banana (100 cal)

5:00pm  oatmeal (300 cal)

7:30pm  hamburger sliders with fries (900 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

11:30pm bedtime

No cpap, got 4 hours of broken sleep.

 

Dec 12

 

134.2 lbs (16.5% fat, 56.5% water, 22.9 BMI, 105.6 lbs muscle, 5.7 lbs bone)

Loose BM

 

Today I am on an all liquid diet because I’m having my colonoscopy tomorrow.  Yay... not!

 

1410 cal

 

9:05am  palpitations

9:40am  375mg Depakote

11:30am  white grape juice and blueberry jello (340 cal)

1:30pm  white grape juice and blueberry jello (340 cal)

3:00pm  brain fog

3:40pm  white grape juice and blueberry jello (340 cal)

4:30pm  diarrhea 

5:00pm  white grape juice (180 cal)

 

Started prep at 6:15pm.

 

8:45pm  beef broth and white grape juice (210 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

 

Did not sleep at all tonight, was up doing the prep and drinking fluids.

 

 

Dec 13

 

133.2 lbs (13.2% fat, 58.2% water, 22.7 BMI, 110 lbs muscle, 5.7 lbs bone) — after colonoscopy 

 

1400 cal

 

Had the colonoscopy this morning at 9am, came back with no abnormalities found.  Biopsies taken, should get the results soon.

 

12:15pm  375mg Depakote

2:00pm  gatorade (100 cal)

3:00pm  applesauce (200 cal)

3:10pm  banana (100 cal)

4:30pm  gatorade (100 cal)

6:00pm  oatmeal with milk (475 cal)

6:30pm  brain fog

7:45pm  egg sandwich with gatorade (520 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:10pm  bedtime

Woke up 4 times and got about 5 hours of sleep.

 

 

Dec 14

 

132.8 lbs (16.4% fat, 56.4% water, 22.7 BMI, 105 lbs muscle, 5.5 lbs bone)

Weight loss is at 5.6% over 5 months with an 8 lbs loss.  Still no appetite and nausea with weakness and fatigue.  More visible signs of fat loss throughout body (face, arms, legs, hands, feet, abdomen)

 

Saw a new PCP today and he has no idea what could be causing the weight loss or insomnia.  Wants me to keep him updated with what I find out from the specialists.  Ordered labs but since I am having so many other labs done I asked him to hold off on those.

 

2330 cal

 

6:40am  diarrhea

7:40am  panic, weakness

8:00am dizziness

8:30am oatmeal with gatorade (550 cal)

8:30am  375mg Depakote 

8:45am  explosive watery diarrhea 

12:30pm  sourdough toast with 2 scrambled eggs and apple juice (800)

1:30pm  liquid diarrhea 

2:40pm  banana and applesauce (280 cal)

5:30pm  banana (100 cal)

5:50pm  nausea

7:40pm  grilled pork chop and mashed potatoes (600 cal)

10:00pm  22.5mg Quetiapine, 2mg Diazepam 

Bedtime 11:30pm.  Got about 4 hours of sleep, woke up at 4:45am and could not fall back asleep 

 

 

Dec 15

 

131.8 lbs (17.6% fat, 55.6% water, 22.5 BMI, 103.8 lbs muscle, 5.5 lbs bone)

 

2540 cal

 

9:00am  diarrhea/loose bm

10:00am  350mg Depakote (250mg ER plus 100mg Sprinkles)

11:00am  bowl of cheerios, 2 scrambled eggs and a banana (600 cal) 

1:30pm  boost nutritional drink (360 cal)

2:00pm  nausea

5:00pm  grilled salmon with mashed potatoes and garden greens w/ bread (940 cal)

8:00pm  pint of ice cream (640 cal)

9:00pm  watery diarrhea 

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

11:00pm  fell asleep on couch

12:40am  woke up and went to bed

Woke up a couple of times and got about 4 more hours of sleep.

 

[LilBit]

I decreased my Depakote to 350mg yesterday.  I am wondering if I can speed up the taper because I am concerned about my what appears to be life threatening wasting as well as the way it has apparently affected my liver.  The skin in various parts of my body such as my hands, arms and neck is loose; my muscles are weaker and I feel more fatigued.  My knees, shoulders and collarbone are more prominent with muscle/fat loss in those areas.

 

 I don’t know what is happening.  I am seeing a neurologist and oncologist tomorrow and following up with my endocrinologist Friday.  I am awaiting the results from all labs I have had.  To say I am worried is an understatement but I know that the stress is not helping, neither is the sleep deprivation.  

[Carmie]

Hi Kev, 

 

How did you go with the specialists appointments so far? I’m sorry you’re losing so much weight, and yes, it must be scary for you. 

 

Keep us updated on how youre doing. 

 

Sending hugs🤗

[LilBit]

Dec 16

 

132.2 lbs (17.4% fat, 55.9% water, 22.7 BMI, 104.5 lbs muscle, 5.5 lbs bone)

 

Today I notice more fat loss in my hands and legs.  Now I am also seeing muscle loss in my quadriceps and shoulders.  Really starting to get concerned about the wasting.

 

2480 cal

 

8:30am  small, loose bm

8:50am  oatmeal (450 cal)

9:30am  350mg Depakote

10:10am  cantaloupe 16oz (150 cal)

12:15pm  banana (100 cal)

1:45pm  turkey bacon avocado wrap from Subway (800 cal)

4:00pm  fatigue and weakness

5:30pm  banana (100 cal)

5:45pm  applesauce (180 cal)

8:30pm  grilled chicken breast with peas and rice w/ apple juice (700 cal)

9:45pm  22.5mg Quetiapine, 2mg Diazepam 

11:00pm bedtime

Woke up once and then woke at 5am, couldn’t fall back asleep, got 4 1/2 hours of sleep

 

 

Dec 17

 

134 lbs (17% fat, 55.9% water, 22.9 BMI, 105 lbs muscle, 5.5 lbs bone)

 

2300 cal

 

6:50am  loose bm/diarrhea 

7:45am  bowl of cereal (450 cal)

7:55am  diarrhea

8:10am  banana (100 cal)

9:45am  boost nutritional drink (360 cal)

9:45am  350mg Depakote

10:30am  nausea

11:20am  diarrhea

12:15pm  diarrhea

1:00pm  grilled chicken with rice and lima beans (500 cal)

1:20pm  flatulence

1:20pm  strawberry activia yogurt (90 cal)

5:20pm  applesauce and banana (280 cal)

8:00pm  roast with rice and green beans (500 cal)

9:40pm  22.5mg Quetiapine, 2mg Diazepam 

11:30pm  bedtime

Woke up at 4:45am and could not get back to sleep, got about 4 1/2 hours of sleep

 

 

Dec 18

 

134.4 lbs (16.4% fat, 56.9% water, 22.9BMI, 106.9 lbs muscle, 5.7 bone)

 

2400 cal

 

6:20am  small soft bm

7:20am  diarrhea

8:00am  gatorade and oatmeal with banana (600 cal)

8:20am  diarrhea

9:20am  gatorade (100 cal)

10:00am  350mg Depakote

1:30pm  grilled chicken sandwich from Chili’s (800 cal)

6:00pm  Apple juice (240 cal)

6:40pm  yogurt and banana (200 cal)

8:15pm  small soft bm

8:20pm  beef roast with broccoli (450 cal)

9:30pm  22.5mg Quetiapine, 2mg Diazepam 

10:45pm  bedtime.  Woke twice and got about 5 1/2 hours of sleep 

 

 

Dec 19

 

133.8 lbs (16.4% fat, 56.1% water, 22.8 BMI, 106.7 muscle, 5.7 lbs bone)

 

2700 cal

 

7:20am  loose bm/diarrhea 

8:10am  apple juice, oatmeal, toast w/ olive oil , banana (800 cal)

8:40am  severe diarrhea (foul smell)

9:30am  sore leg muscles

9:40am  350mg Depakote

9:45am  2 pumps Androgel 

10:45am  activia blueberry yogurt (90 cal)

12:30pm  grilled chicken wrap from Sonic (450 cal)

2:00pm  gas, bloating

4:00pm  banana and peaches (260 cal)

5:30pm  vegetable juice (50 cal)

6:30pm  V8 juice (70 cal)

8:00pm  chicken enchiladas w/ rice and beans 

10:00pm  22.5mg Quetiapine, 2mg Diazepam 

11:00pm  bedtime

Woke up at 3:45, fell back asleep for another 30 minutes, tried to go back to sleep but couldn’t.  Got about 4 to 4 1/2 hours of sleep

 

 

[LilBit]

Thanks Carmie.... this is becoming increasingly difficult.  So far nothing is being revealed from my doctors visits other than Low T (which I already knew) and everything else has come back normal so far, had blood work and a colonoscopy and they found nothing.  I am still losing lean body mass and also fat.  I noticed the first signs of what appears to be wasting 3 months ago.  I also read something online about a dose of Depakote ER not being equal to Sprinkles due to the bioavailability of ER being lower... is that corrcect and if so could that be affecting my taper?  I literally feel like I am dying and am really scared at this point.  

[Carmie]

Hi Kev, 

 

I don’t know the answer about the bioavailability but I’ve left a message for the other mods, maybe one of them will know. 

 

I can hear the fear in your messages and I’m so sorry. I can’t read the rest of your thread at the moment as I have limited thinking ability. I gather you are eating as much as you can to try and put on weight. 

 

Are you having trouble eating? I just looked at your diet. You look like you are eating a lot of healthy foods.  Do you think you might be able to add a little bit more of the good fats into your diet? Maybe buy some coconut oil and take a tablespoon here and there? I don’t know if it will help. 

 

I took a lot of coconut oil when I started feeling like I was coming down with a virus and it killed it. I buy the refined one though so the coconut oil taste is not so strong. It’s just as potent though. I just swallow water afterwards though. Also, maybe add more olive oil into your diet, have salads and pour it on. 

 

Have you been to a nutritionist. I’m not sure if they can help or not. Just throwing out options. 

 

Again I’m really sorry that you are going through this. 

 

Sending hugs🤗

 

 

 

 

 

2 hours ago, LilBit said:

Thanks Carmie.... this is becoming increasingly difficult.  So far nothing is being revealed from my doctors visits other than Low T (which I already knew) and everything else has come back normal so far, had blood work and a colonoscopy and they found nothing.  I am still losing lean body mass and also fat.  I noticed the first signs of what appears to be wasting 3 months ago.  I also read something online about a dose of Depakote ER not being equal to Sprinkles due to the bioavailability of ER being lower... is that corrcect and if so could that be affecting my taper?  I literally feel like I am dying and am really scared at this point.  

 

[LilBit]

Thank you for the help and suggestions Carmie, even taking the time to respond when you are not thinking or feeling your best, that really means a lot.  I was thinking a nutritionist too, no doctors have thought about referring me to one.  What I feel is despair... I am having to practically do the work for the doctors.  Telling them what labs to order, how I want to taper, what illness I think I may have.  I have had doctors flat out tell me they cannot help me and also that finding out the cause of my wasting is like looking for a needle in a haystack.  Not a good thought when you feel like you don’t have much time left!  Hugs to you and hope you feel better soon 🤗

[ChessieCat]

On 12/8/2018 at 8:06 PM, Songbird said:

Have you had tests done for parasites, as Alto suggested?

 

I don't think this question has been answered.

[Carmie]

 

40 minutes ago, LilBit said:

Thank you for the help and suggestions Carmie, even taking the time to respond when you are not thinking or feeling your best, that really means a lot.  I was thinking a nutritionist too, no doctors have thought about referring me to one.  What I feel is despair... I am having to practically do the work for the doctors.  Telling them what labs to order, how I want to taper, what illness I think I may have.  I have had doctors flat out tell me they cannot help me and also that finding out the cause of my wasting is like looking for a needle in a haystack.  Not a good thought when you feel like you don’t have much time left!  Hugs to you and hope you feel better soon 🤗

 

Hi again Kev, 

 

Yes, I have been to doctors in the past for lots of things too and they had absolutely no clue about a lot of the symptoms either. I ended up finding an amazing iridologist who was so spot on and helped me so much. Again though, there may be some that may not know what they are doing at all. This guy was great though, he was always booked out. You had to book months in advance. He was also an a acupuncturist and natural therapist. Actually, thinking about him, I must go again some time. I haven’t been for ages. 

 

Good point ChessieCat made. Did you have the parasite test? I just quickly googled it and weight loss is definitely a symptom. There are always more options one can try. I know it’s really scary and I’m so sorry. Please keep us updated as to any other tests or things you’re trying. 

 

Take care💚

 

 

 

 

 

 

[LilBit]

23 minutes ago, ChessieCat said:

 

I don't think this question has been answered.

 

Sorry, yes I have.  In addition to the colonoscopy the gastroenterologist also checked for parasites as well and did not find any.

[Altostrata]

7 hours ago, LilBit said:

9:45am  2 pumps Androgel 

 

 

You've started to take testosterone? Has this had an effect since you started it Dec. 19?

 

On one hand, that's good news the usual tests didn't find anything alarming. On the other hand, what's causing the wasting is still a mystery.

 

6 hours ago, LilBit said:

 I also read something online about a dose of Depakote ER not being equal to Sprinkles due to the bioavailability of ER being lower... is that corrcect and if so could that be affecting my taper?  I literally feel like I am dying and am really scared at this point.  

 

The Depakote ER vs Sprinkles concern does not appear to be germane to your situation. It doesn't look like you have withdrawal symptoms from the Depakote reduction -- which is good.

 

As we've discussed before, the wasting does not seem to be related to your tapering off the drugs. Rather, my guess is it's connected to the iatrogenic liver damage that occurred prior to tapering. The Depakote you're taking may still be irritating your liver.

 

Are you seeing a liver specialist? If I were you, I'd get a more detailed liver assessment.

 

When was the last time you reduced Depakote? What effect did that reduction have?

 

From your diet notes, I surmise you don't do much cooking at home and are mostly eating fast food and packaged convenience food. I see little evidence of fresh dark green leafy vegetables, such as broccoli, kale, chard, spinach, bok choy, cabbage, beet greens, turnip greens, and collard greens. 

 

What is your B vitamin status, particularly folate? What did your last blood panel show?

 

Did you ever take folate supplements? You should also eat fresh green leafies for the roughage, besides essential vitamins, it's good for your bowels. (Start with small amounts of cooked fresh green leafies so your innards can get used to them.)

 

Do you like buttered toast and eggs? That might be a good breakfast for you every morning, with some fresh fruit. (Personally, I always eat a veg with eggs when I have egg for breakfast, I feel it helps balance the protein.)