☼ LilBit: polypharmacy nightmare

[LilBit]

2 hours ago, LilBit said:

I really hate this.  Cognitive decline getting worse and worse to the point that my brain is mush and people asking me if I am okay because I look catatonic.  I can barely think and have no doubt it is not just the meds I am on because I have been on them since August, but because of severe sleep deprivation.  I feel like it is progressively getting worse.  Been getting anywhere from 1-3 hours of sleep here lately, 4 if lucky and it is never continuous.  Last couple of nights I’ve gotten a couple hours of broken sleep.  We just moved back to the part of town we used to live in which is a good thing (more quiet, bigger place, actually have a washer and dryer, closer to friends) so hoping that helps.  Not sure how I am going to keep going like this.

 

Many sources say that brain damage from sleep deprivation is permanent and irreversible.  I don't know what else I can do to improve my sleep at this point but I have an appointment with another sleep doctor in a couple of weeks and a good friend who is an ER doctor is recommending a new primary care physician.  I am also looking into Colvita Collagen to see if that may help.  I'm desperate.

 

http://www.jneurosci.org/content/34/12/4418.short

http://www.pnas.org/content/111/6/E682.abstract

http://www.urmc.rochester.edu/news/story/index.cfm?id=3584

http://www.forbes.com/sites/melaniehaiken/2014/03/20/lack-of-sleep-kills-brain-cells-new-study-suggests/

[LilBit]

I feel like I am losing my mind and am barely holding it together,  I am having a hard time even functioning and speaking.  I am seeing flickers of black and having a hard time even completing basic tasks.  This h asn't happened before... I am scared

[ChessieCat]

On 1/24/2019 at 9:13 AM, Altostrata said:

I would push those doctors along, get someone to see you ASAP.

 

Have you followed up on this?

[LilBit]

Yes Chessie I did, I have an abdominal CT scheduled.  I amreally bothered by my condition at the moment because it just seems to be getting worse.  Up to this point I have been able to hide my problem but now I can’t even communicate woth people properly... am worried not so much about med WD or side effects but what this not sleeping is doing to me.  I don’t even trust myself to drive a car or go somewhere alone with how I feel at the moment  😢😭

[Altostrata]

Lilbit, you are also suffering from nutrient deficiency. Please do not underestimate the importance of this.

 

I am perplexed by your gastroenterologist's inaction. Isn't he worried by your condition? If not, you may need to find a gastro who is.

[LilBit]

2 hours ago, Altostrata said:

Lilbit, you are also suffering from nutrient deficiency. Please do not underestimate the importance of this.

 

I am perplexed by your gastroenterologist's inaction. Isn't he worried by your condition? If not, you may need to find a gastro who is.

 

It seems like he is, other than his office staff being inefficient... he wants to see the results from the ultrasound and I am supposed to be having the Enteroscopy on Thursday, but not sure there is even any point to that one because my endoscopy, colonoscopy and stool sample test all came back negative for anything.  He wants to see all of my labs and all of my records from my previous gastro.  I am pretty sure the soft/loose stools are from WD/meds/insane insomnia.  Is it possible for me to still be suffering from nutrient deficiency even though my Iron, vitamin B6, B12, Folate, Calcium, Vitamin C and Magnesium are all normal on my labs I have had?  Abumin levels are also normal.  D seems to be the only deficiency which has slightly gone up.

 

I honestly feel like the lack of sleep is slowly killing me and my poor brain.  I have GI issues that can’t be explained by a disease or illness, sore muscles and weight loss, fatigue, memory loss, confusion, brain fog, aging skin, weakness, irritability, mood swings and am severely depressed and overwhelmed.  I am trying all of the non-drug coping techniques I can think of to get through this.

[Altostrata]

Has your gastroenterologist considered subclinical pancreatitis? That would not show up on imaging. Please see the paper I posted earlier.

 

You're going to have to stay on top of his staff, make sure they request what they need to request, KEEP LISTS, follow up on what's been delayed, and make sure your gastro gets info as soon as it comes into his office. Wouldn't do to have these documents sitting around on desks somewhere.

 

If you're wasting, obviously you are missing nutrients. Something is not being absorbed into cells. Iron, vitamin B6, B12, Folate, Calcium, Vitamin C and Magnesium are not the only nutrients. Did you look into a source for the Myers cocktail injection?

 

Have you had any adverse reactions from the Depakote reduction?

[Altostrata]

On 1/28/2019 at 9:37 AM, LilBit said:

Many sources say that brain damage from sleep deprivation is permanent and irreversible. 

 

Please stop worrying about this. Sleeplessness is not causing wasting.

 

As ever, I am concerned that the Seroquel and diazepam combination at night is paradoxically keeping you from sleeping.

[eymen23]

On 1/28/2019 at 5:37 PM, LilBit said:

Many sources say that brain damage from sleep deprivation is permanent and irreversible.

 

LilBit,

 

I’m sorry to hear you’re experiencing so much suffering. The symptoms sound very difficult and you’re incredibly brave to keep persisting with this. 

 

I wouldn’t worry about permanent damage from the sleeplessness. So many people going through psychiatric drug withdrawal, alcohol withdrawal, PTSD, extreme stress etc. can have months or years with trouble sleeping. Of course, any stressful event can leave a ‘scar’ as such, but that’s not to say you can’t go on to feel much, much better. After such a challenging period, some gain a new perspective and live a more satisfying life!

 

This is not to trivialise how hard this must be for you right now, but I think it serves best to focus on getting through each day and taking the advise from the mods. Your brain and nervous system will slowly work out the rest! 

 

Hope you feel some relief soon! 

[LilBit]

2 hours ago, Altostrata said:

Has your gastroenterologist considered subclinical pancreatitis? That would not show up on imaging. Please see the paper I posted earlier.

 

You're going to have to stay on top of his staff, make sure they request what they need to request, KEEP LISTS, follow up on what's been delayed, and make sure your gastro gets info as soon as it comes into his office. Wouldn't do to have these documents sitting around on desks somewhere.

 

If you're wasting, obviously you are missing nutrients. Something is not being absorbed into cells. Iron, vitamin B6, B12, Folate, Calcium, Vitamin C and Magnesium are not the only nutrients. Did you look into a source for the Myers cocktail injection?

 

Have you had any adverse reactions from the Depakote reduction?

 

He doesn't seem to think it is pancreatitis but agrees that the pancreatic enzymes couldn’t hurt.  I found several sources for the myers cocktail IV that range anywhere from $70-$150 so at least that is an option.  The only change in any symptoms I can see lately since reducing the Depakote is the increase in tiredness and brain fog/cog fog, and insomnia seems to be worse.  No other reactions as far as I can tell.  I have noticed increased restlessness but that may have been from reducing the Seroquel.

[LilBit]

2 hours ago, Altostrata said:

 

Please stop worrying about this. Sleeplessness is not causing wasting.

 

As ever, I am concerned that the Seroquel and diazepam combination at night is paradoxically keeping you from sleeping.

 

Trust me, I am trying not to worry!  My concern was that sleeplessness can wreak havoc on ALL functions of the body, like the digestive system for example (which I seem to be experiencing).  I was trying to make sense of why an EGD, Colonoscopy, stool sample, and gastric emptying study would come back normal, and labs indicate I am not malnourished. 

 

I am concerned about the combination also and wish I never would have reinstated the diazepam.  I think once I am off of the Depakote I should start tapering off of the Diazepam.  What do you think?

[LilBit]

3 hours ago, eymen23 said:

 

LilBit,

 

I’m sorry to hear you’re experiencing so much suffering. The symptoms sound very difficult and you’re incredibly brave to keep persisting with this. 

 

I wouldn’t worry about permanent damage from the sleeplessness. So many people going through psychiatric drug withdrawal, alcohol withdrawal, PTSD, extreme stress etc. can have months or years with trouble sleeping. Of course, any stressful event can leave a ‘scar’ as such, but that’s not to say you can’t go on to feel much, much better. After such a challenging period, some gain a new perspective and live a more satisfying life!

 

This is not to trivialise how hard this must be for you right now, but I think it serves best to focus on getting through each day and taking the advise from the mods. Your brain and nervous system will slowly work out the rest! 

 

Hope you feel some relief soon! 

 

Thanks for the encouraging words!  I really hope I do too and that you are doing well🙂

[LilBit]

Jan 27

 

134.4 lbs (15% fat, 56.7% water, 23 BMI, 107 lbs muscle, 5.7 lbs bone)

 

2000 cal

 

Brain fog all day again

8:30am  sausage and cheese kolaches and donut (900 cal)

10:30am 275mg Depakote

2:00pm  stir fry with chicken, spinach, onion, tofu, mushrooms, broccoli, egg from Genghis Grill (700 cal)

7:00pm  Grilled chicken sandwich (400 cal)

9:30pm  20mg Seroquel, 2mg diazepam

12:30am  Fell asleep, got about 2 hours of sleep

 

 

Jan 28

 

134 lbs (14.5% fat, 57% water, 22.9 BMI, 108 lbs muscle, 5.7 lbs bone)

 

Feeling heavy brain fog/cog fog this morning so far.

 

1970 cal

 

8:15am  sausage egg cheese mcmuffin with hashbrown (600 cal)

9:15am  275 mg Depakote

1:30pm  brain fog/cog fog/emotional/restless

2:30pm  grilled turkey burger with broccoli and brown rice (670 cal)

7:30pm  grilled chicken sandwich with fries (700 cal)

10:00pm  20mg Seroquel, 2mg diazepam

11:00pm  bedtime, got about 4 hours sleep

 

 

Jan 29

 

134.4 lbs (14.2% fat, 57% water, 23 BMI, 109 lbs muscle, 5.7 lbs bone)

 

2250 cal

 

Still with the heavy brain fog this morning, feel like I am in a daze.

 

6:30am  small bm

7:30am  fruit and maple oatmeal and egg mcmuffin (600 cal)

8:00am  diarrhea

12:00pm  275mg Depakote (forgot AM dose)

1:30pm  Pulled pork sandwich with baked beans and bread pudding (1200 cal)

4:00pm  nausea

9:00pm  bowl of cereal

10:00pm  20mg Seroquel, 2mg Diazepam 

11:30pm  bedtime 

Woke 3 times I think, got about 4 1/2 hours of sleep 

 

[LilBit]

So today I am having a hard time interacting with people, and I almost lost my balance while carrying a box.  This just keeps getting better and better!  Really trying to hang in there.   I am not over exaggerating when I say that I feel like I am on the brink of not being able to function at all. 

[LilBit]

Just wanted to update everyone.... After about a month of feeling extremely foggy and out of it, that seems to have shown a bit of improvement in the past couple of days.  I have lost 2 more pounds, and my new GP who I really like is researching everything she can to try to figure out what is going on.  I am now noticing things like pain when sitting on hard surfaces and my knees bothering me when walking or standing too long.  My abdominal CT showed no new abnormalities, I am meeting with the infectious disease doctor today and I am following up with my gastroeneterologist and sleep doctor on Thursday.  

 

My two biggest concerns now are the insomnia and weight loss.  I have noticed my fasting glucose is elevated ranging between 103-106 and I have much more of an appetite than I did a couple of months ago when it was completely nonexistent.  I am hoping the new sleep doctor on Thursday can provide more guidance and that I get somewhere with the new GP on the weight loss.  We are even wanting to rule out lipodistrophy as a possibility.  I am also going to be seeing a nutritionist to help ensure my diet is optimal.  I tried Co Q-10 but I think it was too activating for me so I might revisit that again at a later time.

 

I have reduced my Depakote Sprinkles to 225mg per day, divided in 2 doses of 112.5mg each in the AM and PM.  My psychiatrist is on board with my taper plan which is good.  I am really hoping to see even a tiny bit of improvement soon, as it has been a long 7 months of sleep deprivation which is clearly starting to take its toll on me.

[LilBit]

I got 3-4 hours of sleep last night and feel twice as bad as I did yesterday, like a normal person would feel after staying up all night.  Sick, headache, burning eyes, very tired and major cog issues.  The sleep doctor basically told me it is a med issue and he is not the right person to treat me, that I should see the sleep center that is affiliated with the same practice as my psychiatrist.  Given the med and psych history he did not feel comfortable treating me with the complexity of the situation, since it is a combination of sleep apnea and insomnia.  The only thing I can think of doing in the meantime is continue what I’ve been doing and give the cpap another try.  Sometimes I just want to cry because it is so unbearable but I know I can get through this.

[LilBit]

I am struggling here guys.... this insomnia is killing me.... sometimes I just wish I was dead because the suffering is unbearable .... 7 months of crappy sleep, I don’t even know anymore what to do about it becuase of the chicken and the egg, sleep apnea with insomnia and it seems nobody can help me.  Do we treat the sleep apnea?  Do we treat the insomnia?  I don’t even know what caused it anymore.  Did I already have insomnia because of stress and anxiety and was maskingIt with pills?  Did apnea cause the insomnia?  Did insomnia exacerbate the apnea?  Did I always have both and now that sleeping pills aren’t an option I am SOL? I feel like I have tried eveything and just want the suffering to stop....

[ChessieCat]

You doesn't seem to have improved your diet.

 

On 2/21/2019 at 3:26 AM, LilBit said:

I am struggling here guys.... this insomnia is killing me.... sometimes I just wish I was dead because the suffering is unbearable .... 7 months of crappy sleep, I don’t even know anymore what to do about it becuase of the chicken and the egg, sleep apnea with insomnia and it seems nobody can help me.  Do we treat the sleep apnea?  Do we treat the insomnia?  I don’t even know what caused it anymore.  Did I already have insomnia because of stress and anxiety and was maskingIt with pills?  Did apnea cause the insomnia?  Did insomnia exacerbate the apnea?  Did I always have both and now that sleeping pills aren’t an option I am SOL? I feel like I have tried eveything and just want the suffering to stop....

 

 

On 1/31/2019 at 11:09 AM, LilBit said:

Jan 27

 

134.4 lbs (15% fat, 56.7% water, 23 BMI, 107 lbs muscle, 5.7 lbs bone)

 

2000 cal

 

Brain fog all day again

8:30am  sausage and cheese kolaches and donut (900 cal)

10:30am 275mg Depakote

2:00pm  stir fry with chicken, spinach, onion, tofu, mushrooms, broccoli, egg from Genghis Grill (700 cal)

7:00pm  Grilled chicken sandwich (400 cal)

9:30pm  20mg Seroquel, 2mg diazepam

12:30am  Fell asleep, got about 2 hours of sleep

 

 

Jan 28

 

134 lbs (14.5% fat, 57% water, 22.9 BMI, 108 lbs muscle, 5.7 lbs bone)

 

Feeling heavy brain fog/cog fog this morning so far.

 

1970 cal

 

8:15am  sausage egg cheese mcmuffin with hashbrown (600 cal)

9:15am  275 mg Depakote

1:30pm  brain fog/cog fog/emotional/restless

2:30pm  grilled turkey burger with broccoli and brown rice (670 cal)

7:30pm  grilled chicken sandwich with fries (700 cal)

10:00pm  20mg Seroquel, 2mg diazepam

11:00pm  bedtime, got about 4 hours sleep

 

 

Jan 29

 

134.4 lbs (14.2% fat, 57% water, 23 BMI, 109 lbs muscle, 5.7 lbs bone)

 

2250 cal

 

Still with the heavy brain fog this morning, feel like I am in a daze.

 

6:30am  small bm

7:30am  fruit and maple oatmeal and egg mcmuffin (600 cal)

8:00am  diarrhea

12:00pm  275mg Depakote (forgot AM dose)

1:30pm  Pulled pork sandwich with baked beans and bread pudding (1200 cal)

4:00pm  nausea

9:00pm  bowl of cereal

10:00pm  20mg Seroquel, 2mg Diazepam 

11:30pm  bedtime 

Woke 3 times I think, got about 4 1/2 hours of sleep 

 

 

Edited February 21, 2019 by ChessieCat

[LilBit]

Feb 13

 

132.4 lbs  14.2% fat  57.4% water  22.6 BMI

 

7:30am  Soft bm

8:40am  cereal and banana

8:50am  112.5mg Depakote, Enteragam

2:30pm  chicken sandwich with fruit and lemonade 

6:20pm  banana

7:30pm  Chicken chimichangas 

11:30pm  20mg Quetiapine, 2mg Diazepam, 112.5mg Depakote 

12:00am  bedtime, woke twice (snored) and got 4 hours of sleep

 

 

Feb 14

 

I got 3-4 hours of sleep last night and feel twice as bad as I did yesterday, like a normal person would feel after staying up all night.  Sick, headache, burning eyes, very tired and cog issues.  The sleep doctor basically told me it is a med issue and he is not the right person to treat me, that I should see the sleep center at UT Physicians and refunded my copay.  I think I am going to try the CPAP again.

 

133 lbs  14.5% fat  57.3% water  22.7 BMI

 

7:30am  soft bm

8:15am  Enteragam

8:30am  cereal

11:00am  112.5mg Depakote Sprinkles 

1:50pm  grilled chicken sandwich and baked potato with butter and chives

5:50pm  banana

7:30pm  steak with corn and peas

11:00pm  20mg quetiapine, 2mg Diazepam, 112.5mg Depakote 

11:30pm  bedtime, used cpap and was uncomfortable with dry mouth, maybe 4 hours of sleep, woke a few times

 

 

Feb 15

 

132.4 lbs  14.7% fat  57.1% water  22.6 BMI

 

7:10am  soft bm

8:30am  sausage egg and cheese mcmuffin with fruit and yogurt parfait

9:00am  112.5mg Depakote

2:00pm  grilled fish with mashed potatoes and gravy with salad

8:30pm  turkey lasagna

10:30pm  20mg  Quetiapine, 2mg Diazepam 

12:00am  bedtime, kept CPAP on for 2 1/2 hours, woke myself snoring after that, got about 2 1/2 hours of sleep

 

 

Feb 16

 

133 lbs  15% fat  57% water  22.7 BMI

 

When I was laying in bed this morning, I felt around my neck area and it feels like there is more fat loss.  I am noticing more fat loss in thighs and buttocks as well, with muscles being more pronounced.  Also, I checked my temperature around the warm areas of my body (thighs, legs) and temps were as high as 101. 

 

8:30am  soft, loose foul smelling bm

9:30am  112.5mg  Depakote, Enteragam

9:45am  banana

11:30am  egg mcmuffin and fruit & yogurt parfait 

2:00pm  roast beef with macaroni, mashed potatoes, green beans

7:30pm  mediterranean chicken salad

9:30pm  20mg Quetiapine, 2mg Diazepam, 112.5mg Depakote

10:30pm  peanut butter & banana

 

 

Feb 17

 

When I woke this morning I had some inner restlessness, tension and anxiety.  I felt warm even though the AC was set to 65, not sure why that is.  I used the CPAP again last night and got maybe 4 hours of sleep, took it off early in the AM around 4.

 

133 lbs,  14.7% fat,  57% water, 22.7 BMI

 

8:30am  soft bm

10:00am  112.5mg Depakote, Enteragam

10:30am  bowl of cereal, banana

11:30am  very tired, brain fog

2:00pm  chicken sandwich

6:00pm  chicken breast with green beans and pasta, glass of milk

10:00pm  20mg quetiapine, 2mg Diazepam 

11:30pm  bedtime

Used CPAP , tossed and turned and had to remove mask a couple times.  Levi got up around 3:45 to use bathroom.  I woke at 5-ish and removed mask and could not fall back asleep.

 

 

Feb 18

 

132.4 lbs,  14.9% fat,  57% water, 22.6 BMI

 

7:30am  soft bm

10:00am  Enteragam, 112.5mg Depakote

10:15am  Banana, apple juice 

1:40pm  chicken la madeleine with broccoli and whole grain rice, and bowl of tomato basil soup

5:30pm  apple juice

8:30pm  stuffed bell peppers with rice, ground turkey and seasoning with avocado

9:00pm  gas

10:30pm  20mg Quetiapine, 2mg Diazepam, 112.5mg Depakote 

12:00am  bedtime, kept cpap mask on for 3 hours, got about 3-4 hours of broken sleep

 

 

Feb 19

 

Very tired, red eyes this morning.  Feeling like I might have a cold or something because I had a painful sore throat last night when trying to sleep and this morning I feel like I have a small fever.  Today runny nose and sore throat.  Mentally good with no brain fog.

 

132.6 lbs, 15% fat, 57% water, 22.7 BMI

 

7:50am  soft bm

8:00am  gas

9:30am  foul smelling diarrhea

9:40am  112.5mg Depakote

10:30am  bowl of cereal and banana

1:30pm  3 scrambled eggs with english muffin, fruit cup and avocado (ihop)

6:30pm  cup of yogurt (0% milk fat) with honey and coconut oil

7:45pm  turkey bolognese 

10:00pm  112.5mg Depakote, 20mg Quetiapine,  2mg diazepam

11:30pm  bedtime, woke a few times and got 4 hours of sleep

 

 

Feb 20

 

Feeling very out of it today, brain fog, most likely from the lack of sleep.  Very tired and exhausted, don’t feel as sick as last night.  Reducing the Depakote to 200mg daily today split in two doses.

 

132.8 lbs, 15% fat, 57% water, 22.7 BMI

 

7:30am  small soft bm

9:00am  sausage egg and cheese mcmuffin

9:15am  Depakote 100mg

9:30am  Enteragam

1:30pm  rotisserie chicken sandwich on wheat bread with cucumber, american cheese, lettuce, tomato, guacamole and chips

4:30pm  banana and apple juice

7:30pm  chicken sandwich (chicken, lettuce, tomato, cheese) and macaroni & cheese

 

[LilBit]

Chessie I am trying my best.  I have to watch certain things becuase I am prone to getting kidney stones, I also am apparently having blood sugar issues and am losing weight still.  I am down to 132 now but it is not normal weight loss.... I am losing subcutaneous fat.  Face, hands, feet, arms, legs.  I have tried myers cocktail, my gastro says it is not malabsorption or subclinical pancreatitis because my fecal sample came back normal as did my abdominal CT, and all labs as well.  I have seen a million doctors and none of them can tell me what is going on.  I wanted to see a nutritionist but it is too expensive for me to be able to afford right now.  I am scared and at the current rate don’t see myself around in the next 6 months, that’s how serious I see this situation.  I don’t know what to do diet-wise becaise it seems the healthier I eat the faster I lose weight.

[Altostrata]

Lilbit, do you feel any symptoms from the reductions of Depakote?

 

It seems to me your daily symptom pattern has improved with the lower Depakote dosage; you are having diarrhea less often.

 

If I were you, for your next Depakote reduction, I'd reduce the nighttime dose en route to eliminating it altogether.

 

How did you feel after having the Myers cocktail? Did you discuss subclinical pancreatitis with your gastroenterologist?

 

Are you on a low-fat diet? No need to do that! You need as many calories as you can get, fat contributes some important nutrients.

 

Definitely treat the sleep apnea with CPAP, etc.

[LilBit]

4 hours ago, Altostrata said:

Lilbit, do you feel any symptoms from the reductions of Depakote?   Not that I can tell.  Symptoms seem pretty consistent.

 

It seems to me your daily symptom pattern has improved with the lower Depakote dosage; you are having diarrhea less often.

 

If I were you, for your next Depakote reduction, I'd reduce the nighttime dose en route to eliminating it altogether.  It seems my symptoms improved when I split and reduced the dose equally to avoid interdose withdrawal (since Sprinkles/DR stays in the system for less time than ER), curious on your thoughts on this.

 

How did you feel after having the Myers cocktail? Did you discuss subclinical pancreatitis with your gastroenterologist?  I didn't notice any perceivable difference and it actually seemed like my sleep has worsened, but not sure if it is because of that.  I did discuss it with him and he says if that were the case, my stool sample would have come back abnormal.

 

Are you on a low-fat diet? No need to do that! You need as many calories as you can get, fat contributes some important nutrients.  Not low fat but trying to make healthier choices/ eat healthier fats.  Especially if this turns out to be lipodystrophy.

 

Definitely treat the sleep apnea with CPAP, etc.  Trying to tolerate it but not having good luck so far.  Getting a third opinion in April but might have to follow up with my sleep doctor before then. 

 

 

Thank you for taking the time to check in Alto, I replied to your questions above in red.  What is weird is despite the fat loss and insomnia, I still have energy.  Now I am coming down with a cold to make matters worse but afraid to take anything to feel better. 

[LilBit]

I laid in bed this morning until about 10:30 because I felt so weak and tired.  Still have nasal congestion and feel like I have a fever, but when I check my temp it is not very high. I have lost 2 more pounds since yesterday, getting very worried now.  I can see more fat loss in hands, arms and legs.  Hopefully all of the labs I had done yesterday will come back before Wednesday and we can discuss with my doctor.

[Altostrata]

17 hours ago, LilBit said:

It seems my symptoms improved when I split and reduced the dose equally to avoid interdose withdrawal (since Sprinkles/DR stays in the system for less time than ER), curious on your thoughts on this.

 

When did you do this? How did your symptoms improve?

 

Please copy and paste the link to the post by clicking on the tiny branch icon in the upper right corner of the post.

 

On 12/23/2018 at 1:47 PM, LilBit said:

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.

 

Just noticed this. Eat buttered toast and eggs anyway. They probably have little to do with LDL, and you can deal with that later after you've gained some weight.

 

[LilBit]

I started the split dosing on the 12th when I got below 250mg and switched from Depakote ER to all Sprinkles.  I didn’t post when I made the change, I hadn’t been on the site in a bit.  It seems like my brain fog and mood has gotten better but my sleep is still terrible.  I am trying to get in as many calories as I can!  I’ll post the results of all the labs I had done yesterday as soon as they are available.

[LilBit]

Also on a side note, do you think it's possible that I am experiencing limbic kindling as a result of the polydrugging?  I recently saw a neurologist who specializes in dysautonomia and after a thorough exam she said I do not show any obvious signs, but she ordered several labs and wants to do an EMG in a couple of months.  I just feel like something is seriously off, like my body is in constant stress alert and fight or flight mode.  I am going to try more relaxation and yoga to see if it helps.  As always my two primary concerns are the weight loss and insomnia, and I don't think my constant stressing about it is helping.

[Altostrata]

Going on and off all those drugs hasn't done you any favors, that's for sure. Constant fight or flight could be "limbic kindling," which, like dysautonomia, is poorly understood.

 

Sleep apnea might be keeping you from sleeping.

 

How have your symptoms changed since you reduced Depakote? If the decreases don't seem to be doing anything, I'd continue lowering the dosage, maybe by 5% per week.

 

Did we try moving Seroquel earlier in the day?

[LilBit]

I feel like lowering the Depakote has really helped.  More of an appetite, less brain fog, mood is more stable.  I have been decreasing by 25mg per week.  I know this doesn’t follow the 10% guideline, but if I am not seeing any significant WD from it then do you think this would be ok to continue? I just can’t imagine staying on this poison for another 2 years if I only decrease by 5% per week.  I think it is responsible for my liver, kidney and vitamin D issues and could potentially be contributing to my sleep and weight loss issues, not to mention the effect it has on the Quetiapine, which I would like to start tapering off of soon.   No, we haven’t tried changing the timing of it yet.

[LilBit]

So I'll be darned... Research has been done which shows that paradoxical (REM) sleep deprivation can cause a decrease in leptin levels,  increased metabolism,  hyperphagia,  loss of body weight, and gene expression of UCP1 in brown adipose tissue.  It would appear that it is very possible the lack of sleep could be causing the majority of my serious issues.  The good news is that the same research showed that during recovery, metabolism and body weight returned to almost normal.  Now the question remains.... how and when will my sleep improve so that my other symptoms can improve?  I can only hope that as I taper off of these drugs and treat the mild sleep apnea that there is some level of improvement in my sleep.  I still have this awful cold for almost two weeks now and prior to the severe insomnia I almost never got sick.  I am curious to see the results from my labs, particularly the leptin levels and triglycerides.  From the end of the discussion section:

 

"Finally, it is important to note that the sleep deprivation effects discussed so far are not unique to rodent models. In studies of human sleep deprivation or sleep disorders (e.g., apnea, insomnia), the pathophysiological consequences have many similarities to those of rats. For instance, there is heightened sympathetic tone and altered carbohydrate metabolism (38); food intake increases, coincident with elevated ghrelin (an orexigen) and decreased leptin in the circulation (39); immune functions decline (8); and V̇o2 is elevated (4). Sleep loss can also exacerbate morbidity in critically ill patients (17), contribute to health problems of persons of low socioeconomic status (45), and may even lead to premature mortality (29).

 

In summary and conclusion, our results show that 20 days of REM-SD brings about progressive increases in resting metabolic rate and hyperphagia while body weight is lost. We provide evidence that one of the mechanisms mediating hypermetabolism is a pronounced increase in thermogenic capacity, as illustrated by robust gene expression of UCP1 in BAT. Finally, we show that leptin decreases markedly, consistent with elevated sympathetic activity and the need to maintain hyperphagia. Apparently, the increased metabolic rate is a necessary (although curious) outcome of REM-SD that must be strongly defended, but its physiological advantage, if any, awaits clarification."

 

Chronic REM-sleep deprivation of rats elevates metabolic rate and increases UCP1 gene expression in brown adipose tissue

[Altostrata]

3 hours ago, LilBit said:

I feel like lowering the Depakote has really helped.  More of an appetite, less brain fog, mood is more stable.  I have been decreasing by 25mg per week.  I know this doesn’t follow the 10% guideline, but if I am not seeing any significant WD from it then do you think this would be ok to continue? I just can’t imagine staying on this poison for another 2 years if I only decrease by 5% per week.  I think it is responsible for my liver, kidney and vitamin D issues and could potentially be contributing to my sleep and weight loss issues, not to mention the effect it has on the Quetiapine, which I would like to start tapering off of soon.   No, we haven’t tried changing the timing of it yet.

 

Yes, I think you should go off Depakote fairly quickly. Now that you're down to 200mg, you might go off by 20mg per week.

 

I am thinking taking part of the Seroquel dose earlier in the day might be be sedating. Also, Seroquel with diazepam at night paradoxically might be keeping you from sleeping.  But you won't want to change two drugs at once.

[LilBit]

Feb 26

 

Lots of chest and head congestion, hurts when I cough.  Coughing up mucus and thick yellow mucus when I blow my nose.  When I was in bed this morning my heart rate was very high.  I am extremely exhausted.

 

133.5 lbs  16.2% fat  22.8 BMI

 

1970 cal

 

7:20am small bm

8:30am  Enteragam

9:00am  100mg Depakote

9:30am  oatmeal with bananas and apple juice (550 cal)

10:00am  nasal and chest congestion 

10:30am  anxiety/depression 

1:00pm  grilled chicken sandwich with avocado (520 cal)

7:40pm  large avocado (300 cal)

8:00pm  beef stew — beef, potatoes, carrots (600 cal)

9:30pm  100mg Depakote, 20mg Quetiapine, 2mg Diazepam 

10:30pm bedtime

Wore CPAP for whole night, got 4 1/2 to 5 hours of sleep.

 

 

Feb 27

 

Reducing Depakote to 175mg daily in 2 doses today.  Nose running and bad chest congestion, body sore and feel more sick.  Got out of bed at 7:30.  I went and saw my PCP today and it is not the flu or pneumonia, just a really bad cold.  Luckily no sign of infection.

 

133.4 lbs  16.2% fat  22.8 BMI

 

2060 cal

 

7:45am  100.5 temp

8:00am  soft/normal bm

8:30am  Enteragam

9:00am  87.5mg Depakote 

10:20am  diarrhea

11:00am  bowl of cereal and banana (550 cal)

4:30pm  chicken sandwich and large strawberry banana smoothie (710 cal)

8:20pm  chicken fajita with rice, black beans, cheese, grilled veggies (Mexican bowl from Los Cucos - 800 cal)

9:15pm  87.5mg Depakote, 20mg Quetiapine, 2mg Diazepam 

11:00pm  bedtime, used CPAP for 5 1/2 hours, got 4 hours of broken sleep.

 

 

Feb 28

 

Still very sick with fever, chest and nasal congestion.  High heart rate again this am.  Still noticing more fat loss throughout body.  I have suspected for a while that this may be a Depakote side effect, it just doesn’t make sense that I am eating as much as I was before and still losing weight and body fat.  It’s either a side effect, a withdrawal symptom or because of the sleep deprivation.  I can’t think of anything else it could be.

 

132.05 lbs  15.7% fat  22.5 BMI

 

2030 cal

 

9:30am  loose bm

10:00am  87.5mg Depakote

12:30pm  bowl of oatmeal with bananas (550 cal)

4:45pm  vanilla shake (680 cal)

8:00pm  chicken taquitos with rice and beans (800 cal)

9:15pm  87.5mg Depakote, 20mg Quetiapine, 2mg diazepam

11:30pm bedtime, fell asleep for a couple of hours, tried wearing cpap but could not tolerate due to congestion, got another 3 hours of broken sleep with a lot of snoring, 5 hours total

 

 

Mar 1

 

Symptoms of my cold are getting worse.  Sinus pressure, can’t taste anything, cough is worse, coughing up brownish yellow phlegm and brownish yellow nasal drainage, chest pain, fever of 100, elevated heart rate.

 

132.25 lbs  15.8% fat  22.6 BMI

 

2510 cal

 

9:00am  sausage egg and cheese muffin with fruit and yogurt parfait (600 cal)

9:15am  87.5mg Depakote

10:00am  palpitations

2:00pm  grilled chicken sandwich and vanilla shake (1310 cal)

8:00pm  chicken wing and thigh with mashed potatoes and biscuit (600 cal)

9:30pm  fever of 101.5

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

11:30pm  Tried to use CPAP but my face was hurting from sinus pressure.  Got maybe an hour of sleep.  

 

 

Mar 2

 

This morning I am coughing up yellow mucus and bloody yellow mucus when I blow my nose.  Was sweating in bed last night when the AC was off and chilly when it was on.  It appears I might have a sinus infection and respiratory infection.  I was prescribed Amoxicillin by my PCP but afraid to take it because of how sensitive my CNS is now.  Have been having lots of palpitations since the fever started.

 

132.3 lbs  15.8% fat  22.6 BMI

 

600 cal

 

9:00am  palpitations

9:30am  99.1 temp

10:30am  87.5mg Depakote

10:45am  soft bm

12:00pm  cereal and banana (600 cal)

1:30pm  99.1 temp

1:50pm  Enteragam

4:40pm  100.8 temp

 

[Carmie]

Hi Kev, 

 

I hope you get over your cold soon. I’m slowly getting over one myself. 

 

I notice you’re still not eating many greens. Do you not like greens? You may not be getting all the nurtition you need. I’m sorry you’re still losing weight. Did you ever end up going to see a nutritionist?

 

Take care💚

[LilBit]

58 minutes ago, Carmie said:

Hi Kev, 

 

I hope you get over your cold soon. I’m slowly getting over one myself. 

 

I notice you’re still not eating many greens. Do you not like greens? You may not be getting all the nurtition you need. I’m sorry you’re still losing weight. Did you ever end up going to see a nutritionist?

 

Take care💚

 

Thanks Carmie ☺️  I do like greens but have to watch out because a lot of them are apparently high in oxalates, and I am prone to getting kidney stones.  I know it’s bad but here lately I have been very lax with my diet, just trying to increase my calories.  I couldn’t see the nutritionist because it was too expensive... 😔

 

I am hanging in there, seems like everytime I feel like I am improving even in the slightest it is something new!  This has been the longest and hardest 8 months of my life.

[Altostrata]

Get well soon! I have a cold, too.

 

You don't need to avoid oxalates https://www.kidney.org/atoz/content/kidneystones_prevent

[LilBit]

I went to an urgent care clinic yesterday because I was feeling worse and the doctor diagnosed pneumonia.  They gave me a shot of Rocephin and prescribed Augmentin and Zithromax and want me to take the course of those.  He says the next step if I do not improve in 2-3 days is going to ER and possibly being hospitalized.  For now just trying to rest and drink plenty of fluids and control the symptoms.

[Carmie]

Hi Kev, 

 

I’m sorry you’ve got pneumonia. Did you end up having to go into hospital. Hope you recover soon.💚