☼ LilBit: polypharmacy nightmare

[ChessieCat]

10 minutes ago, LilBit said:

I am also trying Lithium Orotate 5mg

 

You will need to make sure that you don't become dehydrated, which could easily happen with diarrhea.

[Altostrata]

3 hours ago, LilBit said:

@Altostrata  I am not doing to well I am sad to say.   I have loose stools and diarrhea in the mornings still, and am on the AIP/paleo diet and trying to avoid high FODMAP foods as much as possible.  I also am still averaging 3 hours of sleep per night, although now I get sleepy most nights, which is a change.  I wake up just as tired as when I went to bed, so I know it's not restorative sleep.  I had the hydrogen breath test and it came back positive and he said I might have SIBO, so the GI wanted me to take Xifaxan like you mentioned. I am actually considering it.

....

I am down to 5mg Depakote and have updated my signature.  I am seeing my GI doc and holistic practitioner tomorrow, and a new holistic doctor next week.   At the rate I am going I will look like a skeleton in a month.  If I could just put a stop to the weight loss I'd be happy.  Something is making it go into overdrive and my appearance has drastically changed, which makes me self conscious and not want to be around anyone.

 

 

Lilbit, you are malnourished from your gut problem. The medical route would be that antibiotic Xifaxan. Is this the same GI who has overlooked SIBO for months? I had looked up GIs in your area who treat SIBO, did you talk to any of them?

 

A more integrative practitioner would start you on herbal oils and gut healing protocols. The one you saw was not a good one, she was just reselling supplement packages. One of the GIs who treat SIBO might start with the herbal protocol. Mine knew about it but stuck to prescription drugs (I took the herbs instead).

 

I am very concerned you are seeing the wrong doctor, who is dithering because he doesn't know what to do.

 

Our member alexjuice had terrible malabsorption with multiple gut problems. He was wasting like you, but after resolving his gut problems, is doing very well.

[Eastcoastgirl]

I sent you options for naturopaths in your area and got no response back so i'm assuming you don't want to help yourself or you'd rather work with a GI doc. 

[LilBit]

23 hours ago, KMart95 said:

I sent you options for naturopaths in your area and got no response back so i'm assuming you don't want to help yourself or you'd rather work with a GI doc. 

 

I’m sorry for not responding, I thought I did.  I have so much going on and my brain is not what it used to be.  I did check out the one doctor you sent me and she charges $400 an hour and doesn’t not take insurance, plus fees for labs which get quite expensive, so unfortunately that is out of my budget.  I do have an appointment with another holistic doctor next week who is more affordable and seems to have very positive reviews,  so I am hoping she can help. 

[Eastcoastgirl]

1 hour ago, LilBit said:

 

I’m sorry for not responding, I thought I did.  I have so much going on and my brain is not what it used to be.  I did check out the one doctor you sent me and she charges $400 an hour and doesn’t not take insurance, plus fees for labs which get quite expensive, so unfortunately that is out of my budget.  I do have an appointment with another holistic doctor next week who is more affordable and seems to have very positive reviews,  so I am hoping she can help. 

Must be a US thing, here in Canada visits are usually no more than $130. You can find everything you need to know about treating SIBO online anyway. This website always came in handy for me. 

 

https://www.siboinfo.com/treatment.html

 

Good luck

[Altostrata]

LilBit, how are you doing?

[LilBit]

@Altostrata Thank you for asking and I apologize that I have not checked in lately.  I had to take a break from the site because I was experiencing a lot of anxiety and depression from my situation and needed to shift my focus elsewhere.   

 

To be honest, my condition has improved in a couple of ways but has progressed and gotten worse in many others.  I have developed CIRS, MCAS, and still have terrible insomnia and am losing weight steadily.  I have increased aches, pains and weakness.  I had a setback last month when exposed to mold again but this time there was no infection, just some nasty symptoms that left after a few days. I no longer have the constant brain fog or akathisia which is an improvement.

 

I am working with a naturopath on restoring nutrition and getting my body metabolizing while repairing the gut, and also toning the Vagus nerve.  She has me on a pretty intense regimen and I am afraid I may be reacting to something in the supplements I am taking, but I am at the point where I have to have faith that I will heal.  Between the depression, anxiety, insomnia, weight loss and continuing decline it has been really tough.  I am using a device called the CES Ultra which is supposed to help with anxiety, depression and insomnia by stimulating the vagus nerve.  I’m also a member of several facebook groups for recovery, withdrawal and neurotoxicity to learn about more things which would help healing and recovery.  My naturopath also has me taking Biocidin to treat the SIBO and I have continued to follow the anti-inflammatory diet, avoiding dairy, soy, sugar, gluten, processed foods and nightshades as mich as possible.

 

I heard about something called Watt-ahh which I am going to try, it is supposed to be an ultra pure linear ionized water which hydrates the cells and allows nutrient absorption.  There is much anecdotal evidence that it helps and I am willing to try anything at this point.  I am really hoping this helps.

 

i am down to 2mg on the Depakote and then will start tapering the Quetiapine.  At first I was thinking of tapering the Valium next, because it has destroyed my GABA receptors and I am sure I am experiencing tolerance and interdose withdrawals, and that it is responsible for 90% of my symptoms.  I even split up the daily dose into an AM and PM dose to try to help with that. I know it is going to be extremely difficult to withdraw from at this point and I am in for a very long and brutal ride.

 

I hope you are doing well and thank you again for checking in on me.  Still fighting this battle and have not succumbed yet!

[Goosie]

Good job on getting off the depakote.   Hang in there- you can do it!!!

[Altostrata]

LilBit, I am so relieved you are seeing some improvement. Yes, I think gut healing is crucially important for you.

 

21 hours ago, LilBit said:

I heard about something called Watt-ahh which I am going to try, it is supposed to be an ultra pure linear ionized water which hydrates the cells and allows nutrient absorption.  There is much anecdotal evidence that it helps and I am willing to try anything at this point.  I am really hoping this helps.

 

I know you are seeking help wherever you can, but I would avoid spending money on exotic supplements like this one. Our ancestors drank from lakes and rivers. Ordinary filtered water should be fine.

[LilBit]

Just checking in to let everyone know how I am doing.  Today I am having a very rough day.  As of this past weekend, I have tapered off of the Depakote.  For the past month or so, my sleep has been terrible and none of my symptoms have really gotten better.  As a matter of fact, I now have pain throughout my body and increased wasting and weakness.  Really trying to hang in there and stay positive!!  I am tired all of the time and my sleep is never really refreshing.  I am still working with the naturopath and am trying to eat as best as I can, drink filtered water, stay active, not overdo the supplements and trying blue blocking glasses, a vagus nerve stimulator device for the insomnia, and I am trying to avoid toxins as much as possible.  The number one thing I hate is when people point out how much weight I look like I have lost.   My psychiatrist wants me to taper the Quetiapine next, but I really think I want to get off of the benzo (Valium) first, because I think it is doing me the most harm.

[Altostrata]

@LilBit how are you doing?

[LilBit]

LilBit - Off ALL drugs and better, and continuing to improve

 

Hello!

I was hesitant to write this since I wasn't sure if I considered myself "fully healed" but now I don't really think there is such a thing. I am a different person than I was 4 years ago before I was injured by psychiatric meds, but I am grateful for it and stronger now than I ever have been. 

As of today, I am officially 2 months FREE OF ALL MEDS. I know the site recommends to wait 1 YEAR, but I felt this needed to be shared now. I completed my taper of Depakote 2 years ago, then Valium (diazepam) earlier this year in June, and lastly Quetiapine in October. I went on hiatus from this site because between reading all of the horror stories and then doing the same in Facebook groups, it was sending me in a downward spiral and was too triggering, sending me in a tailspin I wasn't sure I would recover from.  I am delighted to say that while I still have insomnia, it has improved as have ALL of my other symptoms. My ability to get sleepy and sleep has returned, and I even feel drowsy if I have to take an antihistamine!   If I was more proactive and aggressive with self-care, I am sure it would be even better. The symptoms that remain have become tolerable and I am living life again!

I have put back on all 25 pounds of weight I lost. I was obsessing over how, what and when to eat.... and stressing over my situation (the whole "why me" phase) and over other things in life like losing my job and having relationship problems. I finally reached a point of acceptance--which is SUPER important in this journey--and it slowly improved. It's hard to believe that at one point I had convinced myself that I was DYING... I thought I was suffering from some kind of lipodystrophy or cachexia or something worse. I found YouTube videos of a guy who was harmed by meds like us and had a fatal insomnia and lost the ability to sleep, and I was like, "This is me... I am dying!".

I am here to tell you that I am not dead. Not even close.  Many of the symptoms like muscle twitching, nerve pain, diarrhea, nausea, brain zaps, dry skin, night sweats, visual snow etc. have all either disappeared or markedly improved. A couple of symptoms like tinnitus and eye floaters remain, but I don't obsess over them. I have just learned to live with them and I have adjusted. The most prevalent symptoms are the insomnia and brain fog which still comes and goes, but I am confident that they too will improve over time as well as the couple of other remaining symptoms.

I realized some time ago that focusing on all of my symptoms--including the weight loss-- was preventing me from doing the most important thing... Actually living life!  When I decided to focus on living instead of dying, it was amazing how things started to turn around.  Instead of keeping a daily log of symptoms, for example, I kept a journal of achievements....things I accomplished. Then as time passed, I stopped keeping a journal at all, and just started practicing gratitude and living in the moment. Now, I run 2 businesses and work, and enjoy time with friends and family.  We just had a Christmas party with over 20 guests, and I even had a couple of adult beverages!  I am not condoning this by any means, I am just sharing my personal experience and what works for me. I got tired of fear, and "what ifs" and letting it run my life.  

If you follow my threads and posts, you will see just how much I was suffering, both physically and mentally. I was NOT in a good place at all. My intro topic can be found HERE: LilBit: polypharmacy nightmare - Introductions and updates - Surviving Antidepressants   Ironically, it was the obsessing and researching that amplified it and in my opinion made it much worse. I am not saying that peer support is a bad thing, but I think what people need to realize is that each and every person here is unique... No two stories will be the same.  That means that just because someone else is suffering from taking [insert drug name here] that it doesn't mean that you will suffer the same way. Or that because someone recovered quickly or completely, that you will too.  You may recover completely, you may not.  If not, remember that your brain and body have a remarkable healing ability and also are able to adapt to quite a bit.

You write your own story, not anyone else. It's not a bad thing to take guidance from others, but remind yourself that this is temporary, everything is... Do what works for you.  Be patient with yourself. Be kind to yourself and practice as much self-care as possible. Try to surround yourself with people who care and understand. I was very fortunate in that my partner believed me and supported me as much as possible. Ironically, my last psychiatrist actually believed what happened to me and worked with me to get off of these evil drugs and tried supporting my care by taking a naturopathic and organic approach. I will be sending her a thank you card. She thinks outside the box and is the rare one-in-a-million that you hear about. Between her, my therapist, my partner and my naturopath, I survived. It was a long road and it's not over, but it's because life is a journey and it's much better. You will too, you will get through this.

 

Edited December 16, 2021 by ChessieCat
added success story topic title before merging with Intro topic

[ChessieCat]

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

 

Please see this topic:  How to write your success story

[Erell]

Thank you @LilBit for taking the time to give us an update, this is very generous and nice to read !

 

I do hope you'll let us know how you're doing in the future, and while I write this I wish you a happy and peaceful future ❤

[Altostrata]

Great advice, @LilBit Thanks so much for coming back and giving us an update. I am so happy you're doing so well.

 

How did you recover from the wasting?

[LilBit]

Thanks guys!  I feel that sharing the positive is so important because it really gives people hope. People tend to focus on the negative more when they are suffering, so much that they forget that good things can still happen.

It seems my wasting improved as I began to minimize stress and focus on my mental health and the gut. I stopped worrying so much about what I was easting and just followed a reasonable diet. I added lots of protein and healthy fat to my diet and I also feel like once my sleep started improving, that helped with it also. I can tell if I eat something I shouldn't have because I might get excessive gas or bloating for a few hours, but then it goes away. To this day it seems like I can keep the weight on and have zero GI issues whatsoever.

[Vasherr]

Hi, @LilBit,

 

Your story is truly one of strenght, how are You doing lately?

 

Wishing You a lifelong window!

V.

[BelaLugosi]

Hi @LilBit did you recover your buttocks? Lol I'm sorry. I really want to know tho lol

I used to be proud of mine and they gone smaller and my belly got bigger on quetiapine .. I hate it

[angela9985]

Hello Kev! Reading your updates gives me tear. Myself is suffering from WD(cold turkey of an antipsychotic and fast taper partially of an SSRI) I am sleeping poorly, fatigue all day and feel like dying. I wonder if you taper your seroquel and benzo when you feel better or do you only feel better after you are off all of them? Because I am still holding a benzo and last bit of an SSRI, holding and not seeing improvement for months... I really dunno if I should start tapering again, or should I wait for some improvements before tapering again.