☼ LilBit: polypharmacy nightmare

[LilBit]

Thank you Alto.  I am in tears as I write this, I actually was contemplating calling a suicide prevention line and came on here to read the forums about it and saw your post.  I started having loose bowel movements again the past couple of days.  For some reason strong unpleasant thoughts also.  I definitely would not mind tapering the Depakote.... if you think that would be ok.  I just can’t stop worrying about the weight and fat loss, but worrying does no good I suppose.  The endocrinologist I saw today flat out told me that there is nothing he can do that hasn’t been done already, and referred me to a lipodystrophy specialist in Dallas.  

[LilBit]

Thanks eymen23.   I am trying to keep things in perspective!  It is just alarming when I can see visible fat loss despite not actively trying to lose weight.  I will keep your points in mind.

[eymen23]

8 minutes ago, LilBit said:

Thanks eymen23.   I am trying to keep things in perspective!  It is just alarming when I can see visible fat loss despite not actively trying to lose weight.  I will keep your points in mind.

 

There is certainly something going on, but I am also thinking; if your weight is holding fairly stable over several months, then you would need to be increasing your muscle mass, bone density or water retention to be able to offset the loss in fat.

 

I hope the lipodystrophy specialist is helpful. 

[Songbird]

9 hours ago, LilBit said:

 For some reason strong unpleasant thoughts also.  ...

I just can’t stop worrying about the weight and fat loss, but worrying does no good I suppose.  

 

I'm wondering whether some mindfulness techniques might be helpful for this.  If you are having obsessive thoughts about your health or anything else, you might find mindfulness helpful.  With mindfulness, you are the observer in your mind and you just watch what is going on - kind of like you're a scientist studying some phenomenon.  The idea is that the observer is objective and does not get involved in the drama or pass any judgment on it.  Your goal is not to try to stop the thoughts from happening, but just let them happen without giving them any importance.  Watch the thoughts as if they are clouds floating by, or cars driving past.  Accept that the thoughts are there, but don’t attach any importance to them.

 

I’ve found it can also help to give your internal negative voice a name (e.g. “doomcloud", “chatterbox", "monkey mind" or whatever name you want) so that you can separate this voice from your real self.  When you are able to perceive that this voice is not “you”, it becomes easier to step back from it, get some distance from it, and observe it more objectively.  Many years ago I named the negative voice in my mind the "Doomcloud”.  When the negative thoughts came, I could just observe it happening and say to myself  "oh, there's the Doomcloud again".  This helped immensely to step back from all the negative thoughts and emotions, to be less involved in them, and by getting some distance from them, they felt less intense and not as upsetting or frightening.   I hope that makes some sense!

[LilBit]

It does and I am going to try my best to do just that!  Differentiating between my own thoughts and the neuro-emotions from the drugs and WD has been one of the most difficult parts of this journey.

[LilBit]

Maybe someone can offer some advice, here’s my current dilemma.  I already struggle with insomnia, but now because of the weight/fat loss, any position I go to bed in eventually becomes uncomfortable and I start to hurt after awhile.  Because I lack the muscle/fat I used to have, lying on my side is almost impossible now.  Also, the muscle twitching and weakness has increased.  The past couple of nights, the little sleep I do get is filled with nightmares.  I am desperately trying to hang in there.  I was looking into a functional medicine doctor and I also found a lipodystrophy specialist in a nearby city, but the problem is that neither of them is covered by my insurance and they are both expensive.  My health is declining and I don’t know what to do as I continue to taper the meds.  I am trying to practice mindfulness to shut down the negative thoughts.  I feel like none of my doctors or other people I know are taking this seriously enough and I don’t want to wait until it is too late to address the problems I am having.  As the days go by, I can see myself physically deteriorating and it is very difficult for me to deal with.

 

One other thing is that I have been using a digital scale—I have two of them, the Smart Weigh scale and Gemini 20 from Amazon— and when I weigh a 25mg Quetiapine tablet, I get 0.067g for example.  When I try to get 80% of that for 20mg, I need to weigh out 0.0536g.  Since the scale is only accurate to a thousandth of a gram, would I always round UP and weigh out 0.054g for my dose?  Just want to make sure I have been doing this correctly.  There have been times where I get something like 0.0524g for the weight and weigh out 0.052g.

[Gridley]

9 minutes ago, LilBit said:

would I always round UP

 

It's best to always round up so you don't taper too much.

 

Would putting a pillow between your knees help with sleeping on your side?  

[ChessieCat]

You might find that adding some padding to the top of the bed helps.  Before buying an overlay you could try putting a doona/quilt under your body.  Also using pillows around you to help keep your body in a comfortable position.

 

You might also find that a weighted blanket is comforting and helps to induce relaxation.  There are different weights available.  Again, before buying one, you could test by loading up the bed with lots of covers, bed linen, and anything that you have around that adds weight and is big enough to cover you, not to sleep under because it could be too hot/dangerous, but just to see how the extra weight feels.

[Goosie]

Hi lilbit- little sleep full of nightmares is what I used to have when I was on seroquel.    I still have little sleep , but no more nightmares.   You can do this.   Sending love.   

[LilBit]

On 5/16/2019 at 11:28 AM, Gridley said:

 

It's best to always round up so you don't taper too much.

 

Would putting a pillow between your knees help with sleeping on your side?  

 

I am trying that so far with not much success.  The pillow under the covers annoys me when I try to change positions so I am trying a different one.  As far as the rounding, my concern was the day to day dose being consistent because I have been weighing out my dose individually lately.  I was afraid that if I always round up, some days I’ll get more of the drug than others.

[LilBit]

On 5/16/2019 at 5:34 PM, ChessieCat said:

You might find that adding some padding to the top of the bed helps.  Before buying an overlay you could try putting a doona/quilt under your body.  Also using pillows around you to help keep your body in a comfortable position.

 

You might also find that a weighted blanket is comforting and helps to induce relaxation.  There are different weights available.  Again, before buying one, you could test by loading up the bed with lots of covers, bed linen, and anything that you have around that adds weight and is big enough to cover you, not to sleep under because it could be too hot/dangerous, but just to see how the extra weight feels.

Thank you for the idea Chessie, I actually tried a weighted blanket... it made me too hot and I would have to take it off.  I just can’t win!  The insomnia is officially the worst it has ever been or it is finally catching up with me.  I have been depressed and borderline psychotic the past week and having a hard time controlling my emotions.  I am desperately hanging in there.  

[Gridley]

14 minutes ago, LilBit said:

I was afraid that if I always round up, some days I’ll get more of the drug than others.

 

When I was talking about rounding up, I meant when you're calculating your next dosage.  Then you would measure to get (as close as possible) that same dosage every day.

[LilBit]

Oh ok, yes I understand it in that context.  🙂

[Altostrata]

Lilbit, are you able to play very soft music in your bedroom at night? Following the music with your mind can be a form of meditation, which may help you relax and sleep. See Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

[LilBit]

Thanks for the tip, I’m trying that and also listening to ASMR videos to see if that helps.  Sleep is still about the same and today I felt like a zombie.  I am trying everything I can think of!  I am also seeing a functional medicine doctor on June 7th.  More fat loss and increased nerve pain and muscle twitching..... Ugh!

[LilBit]

Guys I need help, I am getting very desperate… Something is seriously wrong. I am still losing weight, I weighed myself this morning and I am down to 131 pounds now. I weighed 142 when this all started a year ago. The muscle twitching is increasing, my insomnia is getting even worse which I didn’t even think was possible, and I feel like I’m developing akathisia. I have a horrible feeling of inner restlessness, depression, anxiety, and suicidal thoughts. I just want the suffering to end and I’m starting to wonder if it’s ever going to.

[RichT]

Hi Lilbit,

 

sorry you're suffering.

 

Is your BMI below the normal range now?

 

Rich

 

 

[Goosie]

I’m so sorry to hear you are suffering.   It will get better.  You can do this.   

[LilBit]

On 5/27/2019 at 12:22 PM, RichT said:

Hi Lilbit,

 

sorry you're suffering.

 

Is your BMI below the normal range now?

 

Rich

 

 

 

No I haven’t lost quite that much weight yet.  It’s heading in that direction though unless something changes.  Thanks for the kind thoughts.

[LilBit]

23 hours ago, Goosie said:

I’m so sorry to hear you are suffering.   It will get better.  You can do this.   

 

I am determined to get through this!  I have no doubt now that this is neurotoxicity caused by the adverse reaction to SSRIs, combined with withdrawals.  I hope the functional medicine doctor is able to help with the weight loss and insomnia as I taper off of the meds.

[Goosie]

I also lost a lot of weight and it’s a struggle to gain it back.   I eat all the time even if I don’t feel like it.   As I get better the weight comes back.   I hope the functional dr.   Can help.    If you find something that helps with the insomnia let me know!   It is still my worst symptom.    

[Smokeandmirrors22]

Hey Lilbit,

 

I just read through the most recent pages in your thread.

I am so incredibly sorry about what's happening to you, you are so strong and you will get through this!

[LilBit]

Thank you guys for your kindness and support.  My gut instinct is telling me that something is very wrong.  I am down to 128.5 lbs and I weighed 132.6 at the beginning of the month, that’s a 4lb loss in a week and a half.  My bowel movements are not normal.  I know, TMI...  sorry... I am just very concerned that I need to intervene because I know once the weight is lost it is very difficult if not impossible to gain back.  My bones and tendons are becoming more visible and the weight loss is becoming noticeable.  There is a weird vibrating/draining sensation that keeps coming from my pelvic area that just started a couple of days ago.  I feel extremely weak and ill and am sweating even though it is 75 degrees outside.  I am scared and need help...

[eymen23]

Lilbit,

 

I’m so sorry you’re struggling like this, it’s awful to hear. 

 

How is your appetite? Are you eating a consistent number of calories a day? What happens if you eat more? 

[Goosie]

Please have hope.  It will get better.  

[Altostrata]

Lilbit, did your symptoms get dramatically worse shortly after you reduced Depakote?

 

Do you get any particular symptoms after you take any of your drugs?

 

It sounds to me like your internist should put you in the hospital for extensive testing.

[LilBit]

I don’t have an appetite at all really.  I have eliminated gluten, dairy, soy, sugar, and processed foods to minimize inflammation and toxicity.  I have added many healthy fats to my diet such as coconut oil, avocados, coconut butter, salmon and sweet potatoes.  I am working on healing the gut as I think that will make the biggest difference.  The symptoms definitely got worse as I have been tapering the Depakote.  I have probably been tapering it faster than I should have but can’t find consistent advice anywhere on how to dose or taper it because apparently not many people are.  Currently at 9mg for the past week, still taking it in the AM.  If this goes on much longer I’ll be calling my GP.  I recently found out that many things I have been doing are very bad for people suffering from neurotoxicity, like consuming sugar, dairy, gluten, using chemicals, etc.  Apparently magnesium is bad for people suffering from benzo withdrawal also as it binds to GABA receptors.  I haven’t noticed any symptoms after taking the drugs but will keep an eye on it.  I am seeing the functional medicine doctor tomorrow and am hoping they can help.

[Altostrata]

I'm really sorry about your bad reactions to tapering Depakote, LilBit. That was the risk of going off it in case it was hurting your liver and kidneys. Perhaps holding on all tapering for now would be a good idea.

 

I guess your gut might need healing. This is an area where not much is known, but having had gut damage myself, I think the healing protocol is worth it.

 

Please eat those healthy foods as often as possible! Trader Joe's has a coconut-based chocolate "ice cream" that's delicious. I'd eat it every other day!

[RichT]

Lilbit,

 

I’m sorry to hear you’re suffering. I don’t have any advice I can give on your digestive problems except to eat healthily as Alto says. I wish you a speedy recovery.

 

Rich

[BreathofAir]

Hi LB,

 

I haven’t posted on your thread before, but I have experience of losing weight, loss of appetite and gut issues.  I am 5’7” and currently weigh 118lbs.  Under normal circumstances I would be 14lbs or more heavier.  

 

My main problem is anxiety and when I first started ADs this time two years ago, I had lost 28lbs in around four months without trying.  This was solely through anxiety and the severe acid reflux I subsequently developed.  Anxiety can burn weight off like nothing else and it is understandable that you are concerned and focusing on this.  It is exactly what I did. I was uncomfortable in bed and my bones stuck out too. My appetite was shot and I struggled with protein shakes and small portions of food.  Eventually I was able to get my weight back up whilst on the Lexapro.

 

I crashed at the end of my Lexapro and Diazepam taper this April and since then my anxiety has been severe.  I have lost 14lbs. My appetite is shot again and my sleep is not brilliant, although I managed to come off Zopiclone relatively quickly. 

 

Although I have no experience with Depakote, I can offer the following advice, all of which I did: 

 

Get your doctor to rule out anything serious that is a known cause of weight loss. I had CT, endoscopy, blood work. 

Stop weighing yourself.  It will fuel your anxiety further. 

If nothing serious is found to be going on and there is nothing directly drug-related causing this, anxiety and depression are likely the main culprits.  You can turn this around.  I am having to do it all again, without the help of a large dose of Lexapro I had last time. You need to focus on slow release carbs, protein (high quality natural gluten-free shakes), small meals and often, nuts for blood sugar.  You need to find ways to drive up your appetite, because right now your body is in survival mode.

 

I am robotic right now about food. You have to be. It requires strong discipline. I exercise every day, building it up as much as I can manage.  I walk after every meal to help digestion. Don’t give in to exhaustion or lie in bed.  Fight it and motivate yourself.  The exercise will also help your autonomic system and sleep.  It has done with me.  You must get your heart rate up for at least 30 minutes a day.  

 

Plan your meals and always have snacks at the ready. Your blood sugar will be all over the place, but you can help stabilise it a lot with regular healthy snacks. 

 

As others have said, drink as much as you can - about 20 minutes before a meal to prepare your gut lining. Don’t drink after a meal whilst you’re digesting. Walk or move around and keep upright to drive your gut motility so that your stomach empties at a good rate. 

 

The level of discipline required to tip the balance back is hard, but it can be done if you get on with it and don’t make an issue of it.  Just see it as repairing your body and preparing it for the healthiest it will ever have been.  

 

I understand very well how you are feeling. You need fortitude and you will find it.  I am always around, usually complaining about my anxiety whilst I wait to stabilise!  

 

You can do this.  I am. 🤗🤗🤗🤗🤗🤗

 

Sending you hugs and strength. 

R xxxxxxxxxxxxx

🦁🦁🦁🦁🦁🦁🦁🦁🦁

 

 

[LilBit]

BreathofAir, thank you for all of the advice, that definitely helps!  Today I think I feel my worst and my brain feels dead.  I am trying not to let the anxiety get the best of me and will try to avoid doing things that will add to it.

 

I saw the functional medicine doctor today.  She seemed in tune with what is wrong with me and did a physical exam where she squeezed my arm several times and checked several pressure points in my body to see where the problems were.  Then she had me lie down on the exam table and applied pressure to various parts of the body to see how bad the pain was.  From all this and my symptoms she was apparently able to tell I have malabsorption, leaky gut and liver issues.  She says I am basically not absorbing any of the healthy food I am eating, hence the weakness, malaise and weight loss.  Does anyone know if this is typical?  This was my first experience with an FM doc.

 

She wants me to try some natural supplements for gut healing, then after this she wants to address the insomnia and detoxing.  She is going to review all my labs and records.  I am supposed to follow up with her in a week and then in 2 weeks she wants to do a hair sample analysis for possible heavy metal toxicity.  The only thing that concerns me is her lack of knowledge/experience with drug withdrawal.  (I asked her about bone broth increasing glutamate being bad for the benzo injured and she was not aware of this).

 

Wanted to research what she gave me before I take any of it, it is listed below.  Some of the ingredients concern me, like the oat flour, rice, soy and L-glutamine.  I also advised her that I was following the AIP diet to reduce inflammation, and she thought this was good but said she would recommend adding rice to help with gaining weight, which I was unsure about. The visit and supps were $324.  I am concerned about starting so many supps at once in case I react to something, because then I won’t know what is causing the problem.  What do you guys think?  Thanks again everyone for your input.... I am really trying my best to hang in there!! 🙂💛

 

Bio-HPF by Biotics Research Corp (Licorice, Mastic Gum, Slippery Elm, Myrrh, Bismuth Citrate, Clove, Berberine HCl, Anise, Barberry, Oregon Graoe, Wild Indigo)

 

Standard Process Chlorophyll Complex 

 

Standard Process A-F Betafood (Organic beet (root), carrot (root), organic sweet potato, oat flour, organic dried swiss chard (beet leaf) juice, calcium lactate, rice (bran), magnesium citrate, bovine liver, bovine prostate, nutritional yeast, bovine kidney, organic alfalfa (aerial parts), organic flaxseed oil, bovine orchic extract, bovine liver fat extract, d-alpha tocopherol (vitamin E sunflower), and sunflower lecithin.)

 

Okra Pepsin E3

 

Standard Process Enzycore  (Proprietary Blend 538 mg: L-glutamine, kale (aerial parts), beet (root), and vegetarian enzyme blend (acid maltase [1MaltU], alpha-galactosidase [45 GaIU], amylase [1,800 DU], bromelain [32,880 FCCPU], glucoamylase [3 AGU], invertase [170 SU], lactase [325 ALU], lipase [230 FIP], peptidase [820 HUT], protease 3.0 [3 SAPU], protease 4.5 [4,930 HUT], protease 6.0 [1,640 HUT]). Other Ingredients: Cellulose, maltodextrin, and calcium stearate.)

 

Selina Naturally Celtic Sea Salt

 

[ChessieCat]

6 minutes ago, LilBit said:

I am concerned about starting so many supps at once in case I react to something, because then I won’t know what is causing the problem.  What do you guys think?

 

That makes good sense.  And starting with a small dose would be a good idea too.

 

[eymen23]

Lilbit,

 

There is a lot to mention in regards to your post above, but I will try my best. 

 

Functional medicine doctors tend to be well meaning, but they often categorise general symptoms of underlying disease or pathology as ‘candida’, ‘SIBO’, ‘leaky gut’ and treat the condition with a prescribed treatment protocol, in much the same way a doctor may prescribe an antidepressant for complaints of fatigue, low mood, intense sadness and insomnia. 

 

These protocols can worsen symptoms, especially in those who are very sick or may be dealing with multiple health problems. Feeling pressure points and listening to symptoms, is not an adequate way of diagnosing ‘malabsorption’ or ‘leaky gut’. It’s likely that your gut is not operating at an optimal or ‘normal’ level, but that is the case for a large number of us. You may or may not have ‘malabsorption’ and/or ‘leaky gut’, and you may or may not benefit from these multi ingredient formulas she has recommended. 

 

There is no doubt that you are unwell and that your body is not functioning in an optimal way, but for anybody to make such an analysis and happily recommend expensive supplements with little/no medical investigation is (in my opinion) rather naive. 

 

Bio-HPF has a large number of ingredients I’ve seen recommended for gut health. Personally I have used mastic gum for heartburn and a confirmed H pylori infection with great success, however, with no lab testing and such a broad spectrum supplement, you may find you react negatively to the supplement and you won’t know which ingredient is causing the issue. It’s a similar story (in my opinion) for the other multi ingredient supplements. Not only may you react to them, but they’re no doubt expensive too.

 

I know how frustrating it is to be dealing with complex health challenges, but sometimes keeping things as simple as possible and analysing how the body responds works best. If it were me, I would be pressing for lab testing before purchasing or trialing any supplements. 

 

A comprehensive stool test test can provide an array of information including, levels of beneficial bacteria, infections, inflammatory markers, malabsorption markers. This test will often flag up a lot in respect of what is going on in the gut and provide adequate initial direction in healing. I would be reluctant to follow any protocol without adequate testing first and I would go with the simplest and cheapest options first, such as trialling an elimination diet and one supplement (one ingredient) at a time. 

Edited June 18, 2019 by eymen23

[RichT]

If I’m honest Lilbit what you’re FM doctor said sounds like quackery to me. But I’m just a lay person with no qualifications in medicine so it’s just a personal view.

 

I would definitely follow Eymen’s advice and get some conventional tests done. That catalogue of supplements is as likely to be damaging to you in your sensitised state as it is likely to be helpful.

 

warmest wishes

 

Rich

[LilBit]

I honestly don’t know what to do anymore. I continue to keep getting conflicting advice. I was really hoping this functional medicine doctor would be in tune with my situation and be able to offer some sound advice and get me on the right track, but it seems like she has no clue about those of us who have been injured by drugs and the possible hazards of the supplements. I honestly think my situation is this: I got hooked to a benzo, misdiagnosed as BP2, got put on a cocktail of antipsychotics, antidepressants, and so-called mood stabilizers which all wound up damaging me. Then I was exposed to toxins from MRIs, antibiotics, and mold. Now what I’m dealing with is a combination of insomnia, sleep apnea, neurotoxicity, and withdrawals. I think what is doing me in and eventually going to kill me is the lack of sleep, as it seems like my body is slowly shutting down because I’m not getting enough of it. I have no clue what to do at this point as no doctor I have seen has been able to really help me and I can’t seem to find anyone else who is in the same situation as me.  At this rate I don’t even know if I’m going to make it through the next month.

[eymen23]

Lilbit,

 

I totally emphasise and I was concerned my comments were going to put doubts into your head and make you feel like you didn’t know where to turn for the right advice. 

 

I would suggest you choose a path forward and commit to it. Posting a summary from a trip to a doctor, or functional medicine practitioner, are always likely to trigger a lot of counter-comments here, because as a community we have our own recommended way of doing things based on our collective experiences. However, we can never know everything and what will work best for everyone. 

 

If you seek the advice of more than one person, you will always be prone to receiving conflicting advice and becoming overwhelmed. If you trust in the functional medicine practitioner, then by all means trial her methods for a few months and see how they work out for you. However, if you trust in the collective knowledge and guidance of the community here, then please try and follow the advice of all of us here. 

 

Unfortunately, you are unlikely to receive consistent recommendations and direction from all of the sources of knowledge in your life. It is for you to take ownership of that final decision and to implement the plan of action that you feel is best aligned with your situation and values. Wherever possible, I recommend you always try to maintain that autonomy, even in the desperate times where a wrong turn could lead to more suffering. 

Edited June 18, 2019 by eymen23