☼ LilBit: polypharmacy nightmare

[Carmie]

Hi again Kev, 

 

Just curious too. Are you seeing a liver specialist as Alto asked? 

 

I didn’t look at your diet properly before because it was too much for me to read, but looking over it now you really don’t eat enough greens. Alto gave some good suggestions. I hope you start incorporating them. It looks like you need more nutrition in your life. You could see a nutritionist, but just incorporating the things Alto mentioned would be great for your health too. love my greens. Absolutely love salads. Tonight I’m having some steamed veggies with my meat for dinner. 

 

Take care💚

 

 

 

 

 

 

 

 

[ChessieCat]

Have you considered these:

 

feeling-better-green-smoothies

 

juicing

 

The downside to juicing is that you don't get the fibre, so you would need to ensure that you were getting fibre in your diet.

[Altostrata]

LilBit, your symptoms seem to me to be more related to your organs, kidney and liver. I cannot see how neurology might be involved. You are not absorbing nutrients.

 

You can consume milkshakes, if that appeals to you. Just make sure you get lots of fresh green vegetables, too.

 

You might look into getting a Myers cocktail. This is an injection of vitamins. This helped alexjuice feel better when he had similar symptoms (he was suffering from toxic mold exposure and intestinal parasites).

[Carmie]

Hi Kev, 

 

Just checking in to see how you’re doing. Did you decide to see a nutritionist or figure out what to do nutritionally. I’m so sorry you’re struggling so much.  

 

Sending hugs🤗

[Fightingawar]

@LilBit I have lost 80 pounds in 10 months and have so much wasting, I barely can get out of bed because of the weaknesss and fatigue but I thought this was normal for withdrawal. It does make me extremely nervous and I panic thinking about it but I thought it was part of symptoms. And you haven’t lost to much weight have you?  

I pray that’s all that it is, it does scare me 😭

[FarmGirlWorks]

16 hours ago, Altostrata said:

You are not absorbing nutrients.

I take DigestGold by Enymedica at least once a day to help absorb nutrients better. It might be helpful. We can eat a lot of nutritious things but if we are not absorbing the nutrients then it is pointless. I hope you feel better soon.

[LilBit]

Thanks for taking the time to address my concerns Alto.  Sorry I am just now responding but it has been a rough couple of days, I haven’t slept in 3 nights.  This is something new because now that I have lost quite a bit of fat/lean mass, any position I try to sleep in that I am used to is painful.  

 

I started the testosterone because my primary care physician, urologist and endocrinologist all felt like I could benefit from it since my levels are extremely low.  When I started it, I noticed I am having more trouble sleeping.  Unfortunately, a couple of the side effects of AndroGel are worsened insomnia and sleep apnea, exactly what I don’t need.  I have stopped using it for now until I can check in with the doctors.

 

I wasn’t sure about the combination of Depakote formulations but figured I should double check just in case.  I don’t think the tapering is causing the cachexia either.  Ironically, valproic acid is usually what they administer for wasting syndrome because it is a histone deacetylase inhibitor.  I still stand by my original theory that the Restoril potentiated the effect of the SSRIs, specifically the paroxetine, by allowing it to more easily cross the blood brain barrier and cause neurotoxicity, damaging neurons in the hypothalamus.  I think the wasting syndrome was triggered by chronic sleep deprivation and stress.  

 

I am not seeing a liver specialist yet.  I was advised by my endocrinologist and psychiatrist to see a rheumatologist to rule out any autoimmune disorders and also to check cyyokine levels, which are typically extremely elevated in cases of cachexia.

 

The last time I reduced the Depakote was on the 15th to 360mg.  I have noticed a change in my mood as I feel more apathetic and hopeless, but I am not sure if it is because of withdrawals or because I am not any closer to finding a solution, only spending more money doing labs and tests and procedures to find no answer.  My endocrinologist wants me to do an MRI of the pituitary gland to see why I am having these hormonal imbalances.  And of course, more blood work.

 

Unfortunately you are correct, I do not do much cooking because I am not home that much, between doctors appointments and helping my partner with his business.  I am going through quite a bit of emotional stress as well relationship-wise, and stressed about finances because my short term disability is about to run out and waiting to hear an answer on long term.  I am also trying to cope with the fact that we will have to move because of this and also that I may be losing my job and health benefits.  I did do some grocery shopping last night so I can incorporate kale, cauliflower, broccoli, and other foods rich in vitamins and protien into my diet.  Historically I have bever been a cook and lately have a hard time performing even the most basic of tasks, but I am trying!  I know I also need to do resistance exercises for the muscle mass.

 

My last panel from September showed I was good with vitamin B and folate, it was just vitamin D that was the problem (most likely because of Depakote).  I am awaiting results from updated labs I had done last week to check current levels.

 

I do like buttered toast and eggs despite me not having an appetite at all, I just have to watch out because I have elevated LDL cholesterol.  Right now I feel like I am in quite a conundrum because I have low T but cannot use AndroGel, have low vitamin D but supplements make me ill, and I think between the insomnia (sleep apnea) and wasting that my prognosis is pretty poor.  

 

Trying not to think that way but I know it is going to take more than stuffing myself full of calories to fix this.   Losing muscle and fat despite eating, 5% loss in 6 months, anorexia, warmth/inflammation, chillls, nausea, weakness, and fatigue are all hallmark symptoms of cachexia which doesn’t usually respond to simply increasing calories from what I understand.  Now just trying to find the cause.  If it is what I think, then there may in fact be no treatment and I have to accept my fate which is the outcome of decisions which I have made.  I really hope this is not the case.

 

 

[LilBit]

On 12/21/2018 at 4:22 PM, ChessieCat said:

Have you considered these:

 

feeling-better-green-smoothies

 

juicing

 

The downside to juicing is that you don't get the fibre, so you would need to ensure that you were getting fibre in your diet.

 

I actually did buy a juicer!  I got a little discouraged when I realized that it took such a large amount of veggies to make one glass of juice.  I haven’t given up yet though I don’t think 🙂

[ChessieCat]

1 hour ago, LilBit said:

have low vitamin D but supplements make me ill

 

This is one thing that there is an alternative to.  Just a short time outside each day will give you some Vit D.  It may also help with sleep problems if you do it first thing in the morning with no sunglasses on or tinted prescription glasses.  I think my son in law was told to go and sit outside for about 20-30 minutes each morning.

[LilBit]

20 hours ago, Altostrata said:

LilBit, your symptoms seem to me to be more related to your organs, kidney and liver. I cannot see how neurology might be involved. You are not absorbing nutrients.

 

You can consume milkshakes, if that appeals to you. Just make sure you get lots of fresh green vegetables, too.

 

You might look into getting a Myers cocktail. This is an injection of vitamins. This helped alexjuice feel better when he had similar symptoms (he was suffering from toxic mold exposure and intestinal parasites).

 

Thanks for the suggestion, I will definitely look into this!

[LilBit]

12 minutes ago, ChessieCat said:

 

This is one thing that there is an alternative to.  Just a short time outside each day will give you some Vit D.  It may also help with sleep problems if you do it first thing in the morning with no sunglasses on or tinted prescription glasses.  I think my son in law was told to go and sit outside for about 20-30 minutes each morning.

 

This is one of the things that is so strange... I spend a good amount of time outside everyday and always have.  Unfortunately I can’t say if my Vitamin D levels were ok before all of this happened because I don’t have any labs to compare my current levels to.  Thanks for the suggestion 🙂

[LilBit]

18 hours ago, Carmie said:

Hi Kev, 

 

Just checking in to see how you’re doing. Did you decide to see a nutritionist or figure out what to do nutritionally. I’m so sorry you’re struggling so much.  

 

Sending hugs🤗

 

I am feeling malaise and weakness, and pale looking (and extremely sleep deprived) but I am still alive.  Thanks for checking and your concern.  Looks like I will have to add a nutritionist to the list of 20 specialists I have seen since I was poisoned.  Hugs to you as well 🤗

[LilBit]

4 hours ago, Fightingawar said:

@LilBit I have lost 80 pounds in 10 months and have so much wasting, I barely can get out of bed because of the weaknesss and fatigue but I thought this was normal for withdrawal. It does make me extremely nervous and I panic thinking about it but I thought it was part of symptoms. And you haven’t lost to much weight have you?  

I pray that’s all that it is, it does scare me 😭

 

I have heard of people losing weight in withdrawal and gaining as well.  80 pounds does sound like quite a bit, especially depending on what you weighed before.  I would also think that it depends on what kind of weight loss we are talking about... fat, lean body mass, if it is accompanied by loss of appetite, etc.  It is definitely very scary, especially when the weight loss is unexplained or without trying.  My problem is that I am losing both subcutaneous fat and lean body mass, even though I am probably eating more now than before this happened to me.  Hang in there, I know it is a horrible thing to go through.

[LilBit]

Dec 20

 

134.4 lbs (15.6% fat, 56.9% water, 23 BMI, 107.6 lbs muscle, 5.7 lbs bone)

 

2180 cal

 

7:00am  diarrhea

9:30am  oatmeal with bananas and applesauce (580 cal)

9:45am  350mg Depakote 

10:30am  diarrhea 

12:00pm Apple juice (240 cal)

1:20pm  veggie omelette from ihop (860 cal)

2:20pm  severe diarrhea 

4:45pm  diarrhea

7:30pm  chicken breast with rice and corn (500 cal)

8:00pm  palpitations

9:40pm  22.5mg Quetiapine, 2mg diazepam 

11:10pm  bedtime, could not sleep.  Tossed and turned.  When I tried to doze off in the morning I would have hypnagogic hallucinations.  I don’t think I got any sleep. Got up at 6.

 

 

 

Dec 21

 

133.8 lbs (16.4 % fat, 56.4% water, 22.8 BMI, 106lbs muscle, 5.7 lbs bone)

 

2080 cal

 

7:30am  soft narrow bm

8:30am  2.5g Androgel

9:00am  banana (100 cal)

9:30am  oatmeal and hash brown (450 cal)

9:50am  350mg Depakote

1:00pm  black bean burger with fries (600 cal)

1:10pm  flatulent all afternoon / evening

5:30pm  applesauce and banana (280 cal)

8:00pm  grilled chicken breast with rice and broccoli (650 cal)

9:40pm  22.5mg Quetiapine, 2mg diazepam

10:50pm bedtime.  Tried sleeping with cpap and woke shortly after and tossed and turned, couldn’t sleep. Got out of bed at 7:40.

 

 

Dec 22

 

134.2 lbs (17% fat, 56% water, 22.9 BMI, 105.4 lbs muscle, 5.5 lbs bone)

 

1800 cal

 

Not using the AndroGel today to see if if makes a difference with my sleep.

 

8:30am  light colored loose floating bm

10:00am  350mg Depakote 

10:45am  bowl of cereal (500 cal)

11:00am  diarrhea 

12:30pm  2 grilled chicken snack wraps (540 cal)

4:00pm  cup of mixed fruit - strawberries, blueberries, apples, oranges (100 cal)

5:30pm  pain in my leg from standing

7:00pm  depression and anxiety increased

7:40pm  chicken fajita bowl from taco cabana (600 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam

11:10pm  bedtime, tried cpap and dozed off, woke up 30 minutes later because I was in pain.  Now whatever part of my body I lay on hurts.  Even minimizing the pressure hurts other parts of my body.  Tossed and turned.  Not sure what is going to happen if I stop being able to sleep now.

 

 

Dec 23

 

134.4 lbs (16.4% fat, 56% water, 23 BMI, 106 lbs muscle, 5.5 lbs bone)

 

2320 cal

 

9:40am diarrhea

9:50am  350mg Depakote

10:20am  bowl of cereal and banana (600 cal)

1:30pm  smoked turkey and apple sandwich from Panera (700 cal)

2:00pm  weakness, malaise

4:20pm  banana and apple juice (240 cal)

4:25pm  nausea, gas 

4:30pm  depression/crying

5:30pm  applesauce (180 cal)

7:40pm  grilled chicken breast with pinto beans and kale salad (600 cal)

8:00pm  flatulent

9:30pm  22.5mg Quetiapine, 2mg diazepam

11:00pm  bedtime

Woke 4 times, got about 5 hours of sleep, woke at 6am

 

 

Dec 24

 

134.6 lbs (14% fat, 57% water, 23 BMI, 109 lbs muscle, 5.6 lbs bone)

 

This morning having to fast for growth hormone blood work that my endocrinologist ordered.  I am noticing I am hungry this morning and actually have an appetite.

 

2400 cal

 

6:45am  small soft bm

7:00am  flatulent

8:00am  diarrhea (floating)

11:30am  350mg Depakote

11:45pm  banana (100 cal)

12:00pm  emotional/upset

1:20pm  chicken avocado and tomato sandwich w applejuice (540 cal)

Apple juice (140 cal)

4:30pm  vanilla shake (820 cal)

8:30pm  chicken fajitas and egg rolls (800 cal)

10:00pm  22.5mg Quetiapine, 2mg diazepam 

11:30pm  bedtime 

Woke a few times, got about 4 to 4 1/2 hours of sleep

 

[Altostrata]

When was the last time you reduce Depakote? That's supposed to be ongoing. You should be going off Depakote.

 

I am concerned about the diarrhea. If it's not a side effect of Depakote, it needs attention from your doctors.

 

Has anybody checked your thyroid function? https://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroidism-symptoms

[LilBit]

On 12/26/2018 at 6:08 PM, Altostrata said:

When was the last time you reduce Depakote? That's supposed to be ongoing. You should be going off Depakote.

 

I am concerned about the diarrhea. If it's not a side effect of Depakote, it needs attention from your doctors.

 

Has anybody checked your thyroid function? https://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroidism-symptoms

 

I reduced the Depakote to 325mg yesterday.  The results from all of the labs that my psychiatrist ordered just came in and my level of valproic acid is at 16.  As a matter of fact, everything (vitamin b12, folate, phosphorus, vitamin C, magnesium,  vitamin B6, CBC panel, CMP panel, vitamin B1) was normal!  However... Creatinine was low at 0.72.  I researched and low serum ceratinine levels usually indicate low muscle mass or muscle deterioration.  ALT SGPT went from 61 back in September to 51 now, Vitamin D went from 16.7 back in September to 22.5 now in the winter with no supplementation, which further makes me believe that the Depakote was affecting both of these.

 

I am really concerned about the diarrhea too as we can’t seem to pinpoint why I’m having it other than my body going haywire from lack of sleep, so my gastroenterologist prescribed Florastor, Enteragam, and Questran.  I started the Enteragam today and am thinking about starting the other two tomorrow.  What is weird is I am not having it 10 times a day or anything, usually just the one loose movement in the morning.

 

My thyroid levels have been checked, T3 and T4 by my neurologist and are normal.  Also the lymphoma and leukemia panels that my oncologist ordered thankfully came back negative.

 

I had another brain MRI today which was ordered by my endocrinologist with focus on the pituitary gland to see what may be going on there.  He is literally stumped as to why I don’t sleep and am losing weight.  He ordered many labs as well and all of thise came back normal too, except low testosterone (which is probably also being caused by the lack of sleep but hence the MRI to dig deeper).

 

My psychiatrist has been very actively involved, and despite her slight incompetence when it comes to prescribing and tapering meds (like almost all psychiatrists),  seems really concerned and trying to think outside the box of what could be going on here, which I can appreciate.

 

I am taking all of my records and labs to a friend who personally knows a doctor who teaches medicine (no longer in practice) and is going to try to connect me with a doctor in a university setting who can hopefully help.  I am trying my best to remain calm despite feelings of frustration, depression, despair and hopelessness that come along sometimes.  I just hope something can be figured out soon, I am confident that all of it is a combination of sleep deprivation, adverse effects and withdrawals. 

[ChessieCat]

Considering the bad situation you are going through you sound like you are handling it well, or at least as best you can under the circumstances.

 

It also sounds like you have got some good support from the medical professionals.  Here's hoping that things get resolved in the very near future.

[Altostrata]

4 hours ago, LilBit said:

The results from all of the labs that my psychiatrist ordered just came in and my level of valproic acid is at 16.

 

This is meaningless in your case. No matter what your blood level of valproic acid, you could still be getting an adverse reaction to Depakote affecting your liver.

 

4 hours ago, LilBit said:

ALT SGPT went from 61 back in September to 51 now

 

This would be typical in drug-induced liver damage. The liver gradually recovers.

 

Vitamin D is stored in the liver.

 

4 hours ago, LilBit said:

my gastroenterologist prescribed Florastor, Enteragam, and Questran.

 

Did you read up on these drugs on drugs.com? What do they do? If I were you, I would not start several drugs at once. Start one at a time and see what it does. If you get a bad reaction, you know which drug caused it.

 

4 hours ago, LilBit said:

What is weird is I am not having it 10 times a day or anything, usually just the one loose movement in the morning.

 

Please review your notes. It seems to me you have reported diarrhea at different times of day. Please correct me if I'm wrong.

 

If you are having this symptom at the same time each day, that is an indicator it's caused by something else you do on a daily schedule. The Depakote is a likely suspect, but it could be something else, such as the quetiapine at night. FYI, Antipsychotics May Contribute to Cases of Acute Pancreatitis

 

https://www.mayoclinic.org/diseases-conditions/pancreatitis/symptoms-causes/syc-20360227

Quote

 

Chronic pancreatitis signs and symptoms include:

• Upper abdominal pain
• Losing weight without trying
• Oily, smelly stools (steatorrhea)

 

 

Testing and diagnosis: https://pancreasfoundation.org/patient-information/acute-pancreatitis/acute-pancreatitis-testing-and-diagnosis/

 

I really should not be spending my time reading up on your medical condition, Kev. You should be more actively participating in your medical care.

[LilBit]

Alto thanks for your response.  I do realize the Depakote can still be causing an adverse reaction regardless of valproic acid serum level which is why I am so desperate to get off of it, I just wanted to be thorough so I figured I would include that information.  Same thing with the ALT SGPT level.

 

Yes I definitely read up on what my GI doctor prescribed me thoroughly before trying anything.  The Enteragam is a medical food (serum-derived bovine immunoglobulin/protein isolate) which works by binding toxins released by bacteria to prevent them from penetrating the lining of the intestine.  It is supposed to help those with chronic diarrhea, SIBO, leaky gut and IBS in this manner.

 

Florastor is just an over the counter yeast-based probiotic.

 

Questran binds itself to bile acid in the body, causing it to pass from the body and triggering your body to convert cholesterol to bile, lowering cholesterol (which is what it is actually meant for).  As a side effect, it reduces bile acids in the large intestine, reducing diarrhea symptoms.  I most likely won’t be taking this one because the Enteragam seemed to help, I did not have diarrhea this morning yet.

 

You are correct that I have reported diarrhea several times throughout the day lately.  That concerns me,  what I should have said is that it didn’t seem like an excessive number of times per day, but yes it has been happening during the day too, not just in the AM.

 

I did not consider pancreatitis because both my abdominal ultrasound and CT scan showed that it was normal, and I don’t quite have the symptoms described (upper abdominal pain, fever, tenderness to the touch, vomiting).  

 

Now I am also concerned because it is not so much just weight loss but definitely wasting.  My arms, legs, neck, abdomen etc seem to be losing lots of muscle and tissue.  I did not sleep well again last night for the third night in a row and the only other thing I changed besides tapering the Depakote was taking fish oil.  I only started it because I read that it was good for wasting syndrome due to reducing systemic inflammation and good because of the omega 3 fatty acid, but it may be too stimulating for me.  😔

 

Alto I do appreciate you taking your time to research and your advice, I am trying my best to participate in my care and make the right chocies.  I am just so overwhelmed because it is so much to deal with and there is so much going on, and the sleep deprivation is literally killing me.  I do appreciate your help and bearing with me, I honestly am trying to do my best.

[Altostrata]

Okay, LilBit, good to see you've covered the basis. I got upset because I worry about you. But I do believe your symptoms are related to the condition of your organs.

 

Can you discuss subclinical pancreatitis with your doctor? With your kidneys and liver a little out of sorts, it could be that subclinical damage to all 3 organs might cause significant symptoms yet not show up on tests.

Clinical and laboratory diagnosis of chronic pancreatitis

Quote

 

The conventional markers of inflammation, i.e. elevated erythrocyte sedimentation rate (ESR) and elevated leucocytes (WBC) are of no use in establishing the diagnosis of CP. Depending of the character of the respective disease form, stage, and time point, these may or may not be elevated. As chronic pancreatitis is a smoldering disease with subclinical inflammation progressing in the pancreas, ordinary serum markers of inflammation will not be elevated.

....

Pancreatic enzymes below the lower level of normal (LLN) are routinely detected in patients with CP....

....

As chronic pancreatitis cannot be diagnosed with blood tests, the resulting malnutrition could be diagnosed in cases where the patient with CP has already developed pancreatic exocrine insufficiency (PEI).....

....

There are clinical symptoms indicative of chronic pancreatitis, however, none of them are specific or even pathognomonic. They should make a physician think of the pancreas as a source of the patients symptoms. Laboratory tests are also indicative at best: there is no positive test proving the diagnosis of CP. Very low (LLN) pancreatic serum enzymes can be a sign of significant pancreatic exocrine insufficiency (PEI) with chronic pancreatitis (CP) as a major etiology. The same holds true for low fecal elastase as an indicator of PEI and CP being the most frequent cause.

 

Treatment seems worth trying:

 

https://www.niddk.nih.gov/health-information/digestive-diseases/pancreatitis/treatment

Quote

Medicines and vitamins. Your doctor may give you enzyme pills to help with digestion, or vitamins A, D, E, and K if you have malabsorption. He or she may also give you vitamin B-12 shots if you need them.

 

A Myers cocktail, which contains hefty doses of many of those vitamins, might be a good way to start off. Naturopaths are more likely to give them.

 

Maybe lowering the Depakote considerably will make a difference. Maybe your recovering liver will be participating more effectively in your metabolism.

 

When you feel better, you should file a complaint with your state medical board about the doctor who prescribed all these drugs for you.

 

PS Your sleep is not great, but it's not terrible.

[LilBit]

Thanks for your concern Alto, it means a lot to me.  I will discuss subclinical pancreatitis with my doctor.  My gut feeling is that everything that is happening to me now is related to my lack of sleep.  Not to minimize what anyone else is going through by any means, but what has happened to my sleep is way beyond what anyone is experiencing in terms of insomnia.  Whatever this hell is that I am living in seems to be beyond anyone’s comprehension and what seems to be medically possible.

 

 I have forgotten what it even feels like to get sleepy.  Before starting the antidepressants, if I was tired or sleepy I had to fight to stay awake. This is no longer the case now, for the past 6 months.  It is like the aging process is in fast forward.  I am losing muscle and fat.  My skin has lost its youthful smooth look and I now look 5 years older with dry, wrinkled skin. I can’t remember most things and my emotions are all over the place. I lost my hair.  I know it doesn’t seem like my sleep is terrible but it truly is.   I really hope getting rid of the Depakote helps this.  I am scared. 

 

I tried filing a complaint with our state medical board and they dismissed it, saying there was no evidence of malpractice or abuse.  They basically stated the doctor did what he believed was correct, and that I wasn’t forced to take any medication I questioned or that I had the right to get a second opinion if I had any doubt.  I have the letter they sent me and when I am feeling up to it I will try to share it.

[Altostrata]

10 minutes ago, LilBit said:

Not to minimize what anyone else is going through by any means, but what has happened to my sleep is way beyond what anyone is experiencing in terms of insomnia.

 

I doubt this is true, LilBit. You are actually getting a little sleep. There are people here who have gotten zero sleep for weeks.

 

However, I know you are miserable and your physical symptoms are of great concern. You may be lacking in B vitamins from your malnutrition. They are involved in all kinds of neurological activities, including sleep. Just being low in blood sugar can cause anxiety and sleeplessness.

 

Whoever prescribed lithium failed to monitor for liver and kidney damage.

[LilBit]

Dec 25

 

 

133.8 lbs  15% fat, 57% water, 22.8 BMI

 

1900 cal?

 

9:00am  loose bm

10:00am  350mg Depakote

10:45am  cereal and banana (500 cal)

1:45pm  beef tamale with chicken fajita and beans (600 cal)

1:45pm  brain fog / dazed

3:00pm  depression / crying

5:00pm  small piece of cake and cookies (150 cal)

6:00pm  mashed potatoes, beef roast, green bean casserole, 2 buttered croissants (650 cal)

10:00pm  22.5mg Quetiapine, 2mg diazepam 

11:00pm  bedtime

Woke 3-4 times, got about 5 hours of sleep.

 

 

Dec 26

 

134.2 lbs  (15.9% fat  56.5% water  22.9 BMI)

 

I’ve noticed over the past couple of days I have a bit of a sore throat and cough.  I am feeling like I am “frail” or like I am losing all of my “cushioning”.  I started fish oil today, 1 capsule of 500 mg combined EPA and DHA to see if it helps.

 

2780 cal

 

8:00am  loose bm

9:30am  350mg Depakote

10:15am  cereal and banana (500 cal)

10:15am  1g fish oil

11:45am  diarrhea, abdominal pain left side

12:40pm  nausea, feel a bit wired

1:30pm  apple juice (140 cal)

2:30pm  grilled chicken with rice and lima beans (600 cal)

4:00pm  feeling depression from situation I am in

5:30pm  apple juice (140 cal)

7:15pm  baked chicken, mashed potatoes, broccoli, wheat roll, spinach salad (1400 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam

10:45pm bedtime

Tried to use cpap again, got maybe an hour of sleep, kept waking and tossing/turning.

 

Dec 27

 

135 lbs (16.4% fat, 56.3% water, 23 BMI)

 

2150 cal

 

7:30am  diarrhea

9:20am 325mg Depakote

10:30am  oatmeal and banana with apple juice (600 cal)

10:30am  fish oil capsule

11:00am  feel awake and “wired”

3:00pm  grilled chicken sandwich and vanilla shake (1000 cal)

3:45pm  diarrhea

7:30pm  black beans and rice with kale salad (450 cal)

9:30pm 22.5mg Quetiapine, 2mg Diazepam 

9:30pm  1 cup applesauce (100 cal)

11:00pm fell asleep on couch, went to bed at 12:00, woke up a few times, (did not use cpap), got maybe 2-3 hours sleep

 

 

Dec 28

 

134.4 lbs (15.8% fat, 56.6% water, 23 BMI)

 

2600 cal

 

Today in addition to the increased lean mass loss I am also feeling slight nerve pain throughout my body now.  I had a late dinner today because I was stuck running errands all day long and did not get back until late so had to eat out.  Have hardly slept in past 2 nights.

 

7:15am  diarrhea

8:45am cereal and banana (550 cal)

9:00am  fish oil capsule

9:00am  325mg Depakote

9:15am  1 packet of Enteragam

12:20pm  roasted turkey and apple cheddar sandwich (710 cal)

5:00pm  peanut butter wheat sandwich crackers (240 cal)

9:00pm  grilled chicken with broccoli and whole grain rice, buttered toast and avocado (1100 cal)

10:00pm  22.5mg Quetiapine

10:00pm  2mg Diazepam 

12:30am went to bed (due to late dinner and not being sleepy)

Woke up at least a few times and could not sleep.  Noticed I snored shortly after going to bed and it sounded like I was barely breathing which was odd and woke shortly after (1 am).

 

 

Dec 29

 

135 lbs (15.7% fat, 56.7% water, 23 BMI)

 

2180 cal

 

10:00am  1 packet Enteragam, 325mg Depakote

10:30am oatmeal and bananas (400 cal)

11:20am  apple juice (140 cal)

11:30am  stomachache and cramping 

2:15pm  tuna salad sandwich with fruit cup (500 cal)

3:45pm  apple juice (140 cal)

6:30pm  Chicken burrito bowl with brown rice, corn, black beans and guacamole (1000 cal)

7:00pm  brain fog

9:30pm  22.5mg Quetiapine, 2mg diazepam

11:20pm  bedtime

Woke 3 or 4 times, got about 4 hours of sleep.

 

 

Dec 30

 

134.4 lbs (16.8% fat, 56.1% water, 23 BMI)

 

Feel really tired and groggy this morning.

 

2040 cal

 

7:15am  loose bm/diarrhea 

8:00am  cereal with banana and apple juice (550 cal)

8:20am  Enteragam packet

9:00am  325mg Depakote

9:45am  cough/chest irritation 

10:00am  dry mouth/thirst

11:30am  banana (100 cal)

1:20pm  salmon burger with brown rice (550 cal)

2:00pm  apple juice (110 cal)

4:20pm  v8 juice (70 cal)

4:25pm  cup of peaches (160 cal)

6:00pm  gas and bloating 

7:30pm  grilled chicken with brown rice and quinoa and broccoli (500 cal)

9:30pm  22.5mg Quetiapine, 2mg diazepam

11:30pm  bedtime

Restless sleep, I think I woke once and got about 4 hours.

 

[Altostrata]

Lilbit, tomorrow, please bring this up with your gastroenterologist or GP

 

Treatment seems worth trying:

 

https://www.niddk.nih.gov/health-information/digestive-diseases/pancreatitis/treatment

Quote

Medicines and vitamins. Your doctor may give you enzyme pills to help with digestion, or vitamins A, D, E, and K if you have malabsorption. He or she may also give you vitamin B-12 shots if you need them.

 

A Myers cocktail, which contains hefty doses of many of those vitamins, might be a good way to start off. Naturopaths are more likely to give them.

[Carmie]

Hi Kev, 

 

Just popping in to say I’m thinking of you. I’m really sorry that you are struggling so much with malabsorption and weight loss. I hope that you will eventually be able to find something that works for you. 

 

Sending hugs🤗

[LilBit]

19 hours ago, JLex1981 said:

@Fightingawar how much do you weigh now ? R u too skinny and fear malnutrition? 

 

I fear muscle wasting and weakness more than malnutrition right now.  I am hovering around 134 at the moment.  

[LilBit]

2 hours ago, Altostrata said:

Lilbit, tomorrow, please bring this up with your gastroenterologist or GP

 

Treatment seems worth trying:

 

https://www.niddk.nih.gov/health-information/digestive-diseases/pancreatitis/treatment

 

A Myers cocktail, which contains hefty doses of many of those vitamins, might be a good way to start off. Naturopaths are more likely to give them.

 

Thank you Alto, I will definitely check with my doctor on this. 

 

On a side note, after 6 months of being sleep deprived that I am even considering trying Unisom.  I know.... I shouldn’t even dare, but I am really trying to get used to the CPAP since I have been diagnosed with OSA and don’t know what else to do.  I am barely able to function.  What are your thoughts?  I am thinking it probably wouldn’t work anyway and just add to the polypharmacy.  😔

[Altostrata]

I don't know, Lilbit. Seroquel is supposed to have some antihistaminic effect. Unisom is an antihistamine.

 

I am worried that Seroquel might be irritating your pancreas. It might be a good idea to start lowering that soon.

[ChessieCat]

This member recently posted about her CPAP:

 

2 hours ago, Macadamia said:

 

I forgot to mention, the wake-ups and rapid heartbeats during sleep I was complaining about turned out be genuine sleep apnea. I got a CPAP and things are much better with sleep. I actually wake up feeling well rested. Imagine that! 🙂

 

I got a Phillips Respironics Dreamwear mask and a Resmed auto CPAP with humidifier. The equipment is so much more comfortable and user friendly nowadays than it used to be. The mask is very minimal and comfortable, and the machine adjusts the amount of air and humidity needed on the fly. 

 

I will try and stop back and let you all know how I'm doing from time to time, assuming I keep getting reminders to do so. 

 

Thanks for everyone's support on here. 

 

 

[LilBit]

1 hour ago, Carmie said:

Hi Kev, 

 

Just popping in to say I’m thinking of you. I’m really sorry that you are struggling so much with malabsorption and weight loss. I hope that you will eventually be able to find something that works for you. 

 

Sending hugs🤗

 

Thank you Carmie 🤗  I hope so too!  What is scary is that it doesn’t seem to be slowing down.  It is almost like my brain is telling my body to use all this energy.... I think I might be ok if all of my WD symptoms were transient in nature, but the insomnia and weight loss can be life-threatening if they aren’t resolved soon.  On a positive note, I have been having more windows of mental clarity with no brain fog, so I will take what I can get!

[LilBit]

17 minutes ago, Altostrata said:

I don't know, Lilbit. Seroquel is supposed to have some antihistaminic effect. Unisom is an antihistamine.

 

I am worried that Seroquel might be irritating your pancreas. It might be a good idea to start lowering that soon.

 

I probably shouldn’t try it then.  I didn’t think of that and you are right, I have been on it for quite some time now.

[LilBit]

27 minutes ago, ChessieCat said:

This member recently posted about her CPAP:

 

 

 

Seems like they had much better luck than me!  I have the same equipment but am still trying different things to find what works.  

[Altostrata]

When was your last decrease of Depakote? How much are you taking now? Any big changes in symptom pattern?

[LilBit]

5 hours ago, Altostrata said:

When was your last decrease of Depakote? How much are you taking now? Any big changes in symptom pattern?

 

I last decreased to 325mg on 12/27.  I haven’t noticed any major changes except that my sleep seems like it has gotten worse (but that could be because of the CPAP) and I have a little more of an appetite now.  I have been emotional but I think that has been pretty much off and on and pretty constant during this whole ordeal.  I have difficulty determining what symptoms are new and are caused by withdrawal or by lack of sleep.  

[Altostrata]

Are you willing to go to 300mg Depakote tomorrow?

[LilBit]

I went ahead and took 300mg Depakote this morning.  I was so desperate for sleep that I figured I would try melatonin last night and see what happens. I guess I won’t be doing that again… Hardly slept, got maybe an hour of sleep... tossed and turned with cpap, dozed off and woke up with the mask next to me on the bed.  Did not put it back on, could not fall back asleep. Several times when I tried to fall asleep last night and this morning my body would jerk awake.  Feeling sick from sleep deprivation, cannot think or focus and extremely tired.  Not sure what to do.