Some progress at 9 months off, hopefully things continue to improve

[[Re...]]

Today marks nine months since I stopped taking Seroquel for sleep, which I was prescribed during benzo withdrawal. I am over 18 months off the benzo. Some of you may know that Seroquel worsened my already severe condition, causing me to experience worsening akathisia, excruciatingly painful muscle issues including a dystonic episode, and tinnitus, among dozens of other symptoms. I have not had windows, however, I have started to notice some slight improvements recently, which I wanted to share with you.

Firstly, I am now able to sleep better. I can sleep at least six hours straight through the night, and sometimes even eight to 13 hours with minor interruptions. To say that I am exhausted is an understatement. And rightfully so. I let myself sleep as much as I need to. I have taken three naps but cannot consistently nap like a regular human yet.

Additionally, I am now working part-time from home, and my executive function has mostly returned, although complex tasks still pose a challenge.

I have also been able to reintroduce some foods back into my diet like banana and cacao which had triggered akathisia before. I only eat small amounts of these foods.

I have recently reconnected with some old friends and also made a few new ones. I am putting more effort into being a better friend overall. I often have my friends over and also speak with them on FaceTime and Zoom. While I did lose many friends during this time, I have also come to realize that their energies did not match with mine anyway. However, I could have done without their gaslighting!

Despite seeing some improvements, I still have around two dozen symptoms, which I monitor monthly to track my progress. I spend most of my time at home and still experience slight akathisia, although it has improved significantly since November. I feel back in my body most of the time which is a luxury. I still struggle a lot through those moments when symptoms amp up. Myofascial release therapy, along with heat and ice packs, has been incredibly helpful to me.

I avoid taking any vitamins, minerals, supplements, herbs, over-the-counter remedies, and prescription drugs. I eat organic foods, drink plenty of water, and avoid processed snacks, sugar, dairy, gluten, seed oils, fake sweeteners, caffeine, and alcohol. I wasn't a drinker before this and I never did recreational drugs so avoidance  has not been difficult for me. I also steer clear of any medical treatments, including naturopathic treatments like acupuncture and red light therapy which I know could impact my nervous system. I will never do any treatment again that messes with my brain. I don't even want to do hypnotherapy. I avoid chemical products.

Although I still have some extremely challenging symptoms, such as frozen shoulder, jaw pain, hyperacusis, and tinnitus, I feel somewhat encouraged that I may be able to heal from this. I hope to write my success story one day and put this chapter of my life behind me.

To anyone else struggling with similar issues, I want to offer my heartfelt support. I know how difficult it can be, but I urge you to keep going. While I cannot make any guarantees, I believe that time can heal, and I think at this point that I am proof of that. Finally.

In the same breath, I will tell you that I am cautiously optimistic and I know full well that things can change on a dime and go backwards as much as they can go forwards. I am taking it one day at a time and being as careful as possible with my physical body.

 

 

Edited April 5 by [Re...]

[[Re...]]

Hello @[Re...], thank you for this much needed, very uplifting post! It is so useful for us to see that you are getting a bit better and regained some functionality! 

I am only a few weeks before you, I can much relate to your struggles, but I myself see that it in fact gets better. 

I know what you are going through is extremely difficult. But you, amidst all your daily challenges are able to see the positives, the recovery and healing. We will be all pulling for you here, you can count on that 

Take care and Thank you again, 

RR

 

[[Ra...]]

@[Re...] i am very happy for you.you are an angel.you suffered alot, especially beast akathisia. You desrve all happiness.My prayers are with you. 

One thing you here mention about bananas,immediately i understand , why my aka ramp up in previous day, because i,d eat alot of bananas.

Here you mention things which can ramp up aka, i will try to avoid them. 

Hugs 😍

[[Re...]]

15 minutes ago, [[R...] said:

Hello @[Re...], thank you for this much needed, very uplifting post! It is so useful for us to see that you are getting a bit better and regained some functionality! 

I am only a few weeks before you, I can much relate to your struggles, but I myself see that it in fact gets better. 

I know what you are going through is extremely difficult. But you, amidst all your daily challenges are able to see the positives, the recovery and healing. We will be all pulling for you here, you can count on that 

Take care and Thank you again, 

RR

You are too kind. Thank you, RR. I am pulling for all the buddies here as well. I only hope I am not eating my words later! You know how unpredictable this process is. I am controlling what I have control over to the best of my ability.

[[Re...]]

8 minutes ago, [[R...] said:

@[Re...] i am very happy for you.you are an angel.you suffered alot, especially beast akathisia. You desrve all happiness.My prayers are with you. 

One thing you here mention about bananas,immediately i understand , why my aka ramp up in previous day, because i,d eat alot of bananas.

Here you mention things which can ramp up aka, i will try to avoid them. 

Hugs 😍

My prayers are with you too, @[Ra...]. I reached a point where I could only tolerate about eight foods. I don't even recall what they were at this point. It's interesting how everyone's body works differently. For instance, someone I know said that consuming processed sugar helped relieve their akathisia symptoms. I'm sticking to a low-histamine and low-carb diet. I recently spoke with someone who said that carbs helped their akathisia. It just goes to show that what works for one person may not work for another. Some people find relief with a carnivore diet but you have to ease into it cautiously over time and research before trying it.

[[Jo...]]

I am four months off of temazepam and still not sleeping well. I was on 150 mg hydroxyzine and 10 mg dayvigo. I have since tapered both down. Hdyroxyzine is at 25mg and dayvigo is about 3 mg. I have been on Dayvigo for about 5 months and hydroxyzine for about three and a half. Is tapering the best thing to do or should I just cut these drugs out and ride it out. I am already only getting a couple hours of sleep a night. Im scared I dont have the strength to go through it all

[[Re...]]

1 hour ago, [[J...] said:

I am four months off of temazepam and still not sleeping well. I was on 150 mg hydroxyzine and 10 mg dayvigo. I have since tapered both down. Hdyroxyzine is at 25mg and dayvigo is about 3 mg. I have been on Dayvigo for about 5 months and hydroxyzine for about three and a half. Is tapering the best thing to do or should I just cut these drugs out and ride it out. I am already only getting a couple hours of sleep a night. Im scared I dont have the strength to go through it all

@[Jo...]

Somewhere within yourself, you must find the strength to carry on, even if you feel like you have no other choice. I thought I wouldn't make it through, and I still have moments where I struggle, but I wake up every day and keep going regardless. Having the right social support is crucial.

I am a purist when it comes to healing and believe in avoiding neurotoxic chemicals. Anything you take during benzo withdrawal can make things more complicated and prolong the process. I am not sure what is best for you, but I appreciate that you are asking the question and considering your options before making any decisions.

When I was in your position, I consulted with Angela Peacock and Melissa Boutilier - both psych drug harm coaches. I received some bad online advice, but they gave me the support I needed. You can also speak with Dr. Mark Horowitz in the UK for another perspective.

Contrary to mainstream medical belief, not sleeping will not kill you. If it did, all of us on this site would be gone. I would rather go without sleep than suffer from increased akathisia caused by drugs prescribed for sleep. I was prescribed melatonin when Seroquel stopped working for me, and I thought I would have to taper off that too. It became unclear what was causing what symptoms at the time. I forgot to take it one night and just stopped after that.

I haven't researched Dayvigo, an orexin antagonist, so I'm not sure about tapering. Hydroxyzine affects histamine levels and I wouldn't be surprised if it caused a histamine surge when getting off, similar to benzos which also affects histamine. Your receptors need time to recover from all of these drugs. A quick Google search tells me glucose inhibits orexin production, so a low glucose, low histamine diet may help combat any possible effects when discontinuing these medications. Some people experience no effects, while others experience a storm of symptoms. It's impossible to know what to expect. If you're not sleeping, these drugs clearly aren't working.

Be prepared for the possibility that you may not sleep for months. It is very common coming off of benzos. Every person I have ever talked to on this site struggles with this symptom. It's a terrible experience, but if that is the worst symptom, a person is comparatively fortunate. You will sleep again. The body needs time. I took benzos for sleep and I am sleeping consistently now but it took 18 months. You have to be realistic about timelines. Four months is very early in this process to expect to be sleeping.

When I was tapering off Seroquel after benzo CT, I started sleeping better because I was averse to it and it kept me awake. So, always expect the unexpected! Antipsychotics are the original antihistamines. Doctors believe that antihistamines are safe and "non-addictive," and so they tend to prescribe them. Hydroxyzine is currently quite popular among doctors. Educate yourself about these drugs to avoid more harm in the future.

 

[[Jo...]]

2 hours ago, [[R...] said:

@[Jo...]

Somewhere within yourself, you must find the strength to carry on, even if you feel like you have no other choice. I thought I wouldn't make it through, and I still have moments where I struggle, but I wake up every day and keep going regardless. Having the right social support is crucial.

I am a purist when it comes to healing and believe in avoiding neurotoxic chemicals. Anything you take during benzo withdrawal can make things more complicated and prolong the process. I am not sure what is best for you, but I appreciate that you are asking the question and considering your options before making any decisions.

When I was in your position, I consulted with Angela Peacock and Melissa Boutilier - both psych drug harm coaches. I received some bad online advice, but they gave me the support I needed. You can also speak with Dr. Mark Horowitz in the UK for another perspective.

Contrary to mainstream medical belief, not sleeping will not kill you. If it did, all of us on this site would be gone. I would rather go without sleep than suffer from increased akathisia caused by drugs prescribed for sleep. I was prescribed melatonin when Seroquel stopped working for me, and I thought I would have to taper off that too. It became unclear what was causing what symptoms at the time. I forgot to take it one night and just stopped after that.

I haven't researched Dayvigo, an orexin antagonist, so I'm not sure about tapering. Hydroxyzine affects histamine levels and I wouldn't be surprised if it caused a histamine surge when getting off, similar to benzos which also affects histamine. Your receptors need time to recover from all of these drugs. A quick Google search tells me glucose inhibits orexin production, so a low glucose, low histamine diet may help combat any possible effects when discontinuing these medications. Some people experience no effects, while others experience a storm of symptoms. It's impossible to know what to expect. If you're not sleeping, these drugs clearly aren't working.

Be prepared for the possibility that you may not sleep for months. It is very common coming off of benzos. Every person I have ever talked to on this site struggles with this symptom. It's a terrible experience, but if that is the worst symptom, a person is comparatively fortunate. You will sleep again. The body needs time. I took benzos for sleep and I am sleeping consistently now but it took 18 months. You have to be realistic about timelines. Four months is very early in this process to expect to be sleeping.

When I was tapering off Seroquel after benzo CT, I started sleeping better because I was averse to it and it kept me awake. So, always expect the unexpected! Antipsychotics are the original antihistamines. Doctors believe that antihistamines are safe and "non-addictive," and so they tend to prescribe them. Hydroxyzine is currently quite popular among doctors. Educate yourself about these drugs to avoid more harm in the future.

So should I just CT the meds then? I need to be able to work. It’s why I am tapering rn. I feel like it’s the safest bet. I was at 150 for hydroxyzine and down to 25 and 10 with dayvigo now at 2.5. I am not sleeping well but isn’t this also allowing me to heal at lower doses. I have been working with Peter Smith from the UK who has helped a lot of people get off of benzo, AD, SSRI etc. Diet is a big factor and I don’t want to go so many days without sleep I become manic like I did during the first month off of temazepam. I feel like I will lose my job; girlfriend and everything going through this

[[Re...]]

19 minutes ago, [[J...] said:

So should I just CT the meds then? I need to be able to work. It’s why I am tapering rn. I feel like it’s the safest bet. I was at 150 for hydroxyzine and down to 25 and 10 with dayvigo now at 2.5. I am not sleeping well but isn’t this also allowing me to heal at lower doses. I have been working with Peter Smith from the UK who has helped a lot of people get off of benzo, AD, SSRI etc. Diet is a big factor and I don’t want to go so many days without sleep I become manic like I did during the first month off of temazepam. I feel like I will lose my job; girlfriend and everything going through this

I am not familiar with Peter Smith. Dr. Mark Horowitz is the leading tapering expert in the UK doing clinical research. He wrote the first-ever "safer" tapering guidebook on this topic you can find on Amazon. Nobody can or should advise you on how to taper without knowing extensive information about your medical history, genetics, etc. I would recommend meeting with Dr. Horowitz or Angie Peacock. Angie has tapering groups for the UK on Zoom. I suggest you attend one as soon as possible to start to make your informed plan and choices. I understand you want to avoid losses. I am telling you the best way to do that based on my research and experience. You can only control what you can control everything else happens on life's terms. Please keep me posted on what you end up doing. I care about you.

Edited April 5 by [Re...]

[[Jo...]]

29 minutes ago, [[R...] said:

I am not familiar with Peter Smith. Dr. Mark Horowitz is the leading tapering expert in the UK doing clinical research. He wrote the first-ever "safer" tapering guidebook on this topic you can find on Amazon. Nobody can or should advise you on how to taper without knowing extensive information about your medical history, genetics, etc. I would recommend meeting with Dr. Horowitz or Angie Peacock. Angie has tapering groups for the UK on Zoom. I suggest you attend one as soon as possible to start to make your informed plan and choices. I understand you want to avoid losses. I am telling you the best way to do that based on my research and experience. You can only control what you can control everything else happens on life's terms. Please keep me posted on what you end up doing. I care about you.

do you have a link to Dr. Mark Horowitz and Angie Peacock? Does it matter if i am not on a benzo anymore?

 

[[Up...]]

I am so glad to see this.  It truthfully brought me to happy tears!  Hang on Sweet Rebecca you got this!

💜✌🏼🙏

[[Re...]]

2 hours ago, [[U...] said:

I am so glad to see this.  It truthfully brought me to happy tears!  Hang on Sweet Rebecca you got this!

💜✌🏼🙏

Big hug. You remember the worst of it. Still not out of the woods but hanging in there. Thank you for all of your messages and for helping me.

[[Re...]]

9 hours ago, [[J...] said:

do you have a link to Dr. Mark Horowitz and Angie Peacock? Does it matter if i am not on a benzo anymore?

https://www.apeacockconsulting.com/

https://markhorowitz.org/

No, it does not matter. You were injured by the benzo which is the underlying issue.

[[B1...]]

I know you aren't healed, but you are healing. I check back every once in a while here to see how you and a couple others are doing and was absolutely delighted to see this post. You suffered terribly for so long, so you are so deserving of healing and your life back. Please keep us updated, I am sure your trajectory as terrifying as it might be serves as a beacon of hope for those similarly with extremely difficult withdrawals. Much love @[Re...]

[[Pi...]]

You inspire and humble me with your positive attitude. I am struggling so much and just wish I could find just a tiny tiny bit of your resilience. You are amazing

[[Re...]]

4 hours ago, [[B...] said:

I know you aren't healed, but you are healing. I check back every once in a while here to see how you and a couple others are doing and was absolutely delighted to see this post. You suffered terribly for so long, so you are so deserving of healing and your life back. Please keep us updated, I am sure your trajectory as terrifying as it might be serves as a beacon of hope for those similarly with extremely difficult withdrawals. Much love @[Re...]

@[B1...] Such a nice message to receive! How are you doing? Thank you for your kind words.

I yearn for a good life back. I have reflected on so many things in the last 18 months while going through this -- regrets, dreams, and wishes. Mentally and emotionally, I feel better than ever since I stopped taking psych drugs. Psych drugs stifled my creativity and numbed me emotionally, so it's nice to feel human again and alive inside.

The mental and emotional heaviness I have is from the longevity of the physical injury at this point. But maybe on the other side of this, this experience can bring us better lives if we learn the lessons it offers. I am in no way saying this is good or meant to be or any of that toxic positive crap. I am just saying my life shattered and now I am putting a better one together piece by piece intentionally as a result. Being very clear and conscientious. My intuition is through the roof not being on these drugs!!

The volume of the suffering is certainly lower than it was for me. Remember when we were all discussing morphine for akathisia? YIKES. I was so desperate and in a bad place. Glad I did not come out of this with an opioid dependence.

I remain realistic about my progress, and I'm careful to protect it. I'm happy not to have to go to the pharmacy anymore or drink a drug I would literally gag on it tasted so bad and I felt like I was being poisoned because when I took it it made me worse. The Seroquel complicated everything. It's unbelievable how much harm antipsychotics can do. What a dirty class of drugs.

I now have enough physical space to have some cautious optimism. At the same time, I'm managing expectations. Originally I wished to be one of those people who starts to turn a corner weeks off of all the drugs. I have heard those stories. I have also heard the overnight healers and thought let that be me! But here I am. No wiindows only waves of worse and bettering baseline. Up until this point, I have been used to being hit with a baseball bat every time I think I'm turning a corner. Maybe that's changing, and I'm open to the possibility.

I feel that it is equally important to share both the positives and the struggles, as there is a seed of hope inside all of us, even in the most severe cases, otherwise, we would not keep going. I hope to see the day (s) again when I enjoy being in my body and have a pain-free reality. That is the biggest luxury in life. I realized how much I took good health for granted.

The stories we all have could fill many books.

[[Re...]]

2 hours ago, [[P...] said:

You inspire and humble me with your positive attitude. I am struggling so much and just wish I could find just a tiny tiny bit of your resilience. You are amazing

@[Pi...] I have had many long dark moments going through this. I still don't know where I stand spiritually coming out of this. If you are looking for resilience it seems you don't need to look very far. I know this may sound like metaphysical or psychological nonsense, but I believe that you possess the same qualities you see in others. Otherwise, you wouldn't see them. If you're really struggling to access resilience, just borrow mine. Going through this experience has increased my resilience account balance. I have plenty to share now. Ha!

[[re...]]

I have been watching your posts and I love your take on other medicines and even "natural" remedies ramping up withdrawal. I have been there with the Valerian/sleepytime teas, exogenous melatonin, theanine, all the usual crap and WOW did it all make me way worse. It is not as harmless as the modern holistics would claim

I really respect your approach.

That Seroquel is the Devil's medicine to me. So many end up going into an even WORSE benzo withdrawal once these pill pushers give it to someone in an already sensitive nervous system state from benzo withdrawal. I think my problem and why I am here again was the intravenous high doses of Haldol that they gave me in the emergency room ICU from a true medical condition when i was "somewhat restless" and caused most of my weird movements. AP's are SERIOUS business. And I cannot believe how easily they are given out "off label". We are in a very scary time with big pharma and sometimes I feel like we as a society are in their crosshairs and they are the snipers.  Looking for lifelong subscriber$

You are extremely strong and I am thankful for your contributions and that you are seeing some positive results from your completely clean approach to this. It is amazing to behold. Good job. 

[[PE...]]

From what i read and talked to people, it seems like people that not had previous withdrawal problems have less problems than us.

My brothers daughter take it for weeks and then just have weeks breaks with no problem. She just get it for insomnia as it belived to give less problem than z drugs. 

[[re...]]

I am glad you brought this up and you make a great observation. And I have been thinking alot about this with the larger population as well.

But I also think it is just a matter of time for even your brother's daughter to end up having a bad reaction. Sooner or later. But maybe not. Only time will tell.  Sometimes it just takes a longer duration of the start/stop merry go round to finally hit. I think the taking and stopping is way worse than therapeutic stuff of titrating up. Then slowly slowly titrating down. I think kindling could very well be part of this method. 

I have read many many stories here on the journey to this site of people that started out just like you describe your brother's daughter. Starting and stopping no problem then somewhere along the line BAM they started getting withdrawals during the "stop" period then started upping the dose only to be worse and worse off. 

Of course there are the outliers that have no reactions at all to head meds/benzos, etc I think these are the lucky few. 

In saying this I really don't think we are some minority. It is just that many many people really just keep listening to their doctors and don't think outside the box at all and keep trusting their GP's and are still having issues they can't pinpoint to the drugs due to this blind trust in docs and have not been blessed enough to have discernment and find this site or others unfortunately.  

[[PE...]]

18 minutes ago, [[r...] said:

I am glad you brought this up and you make a great observation. And I have been thinking alot about this with the larger population as well.

But I also think it is just a matter of time for even your brother's daughter to end up having a bad reaction. Sooner or later. But maybe not. Only time will tell.  Sometimes it just takes a longer duration of the start/stop merry go round to finally hit. I think the taking and stopping is way worse than therapeutic stuff of titrating up. Then slowly slowly titrating down. I think kindling could very well be part of this method. 

I have read many many stories here on the journey to this site of people that started out just like you describe your brother's daughter. Starting and stopping no problem then somewhere along the line BAM they started getting withdrawals during the "stop" period then started upping the dose only to be worse and worse off. 

Of course there are the outliers that have no reactions at all to head meds/benzos, etc I think these are the lucky few. 

In saying this I really don't think we are some minority. It is just that many many people really just keep listening to their doctors and don't think outside the box at all and keep trusting their GP's and are still having issues they can't pinpoint to the drugs due to this blind trust in docs and have not been blessed enough to have discernment and find this site or others unfortunately.  

I went down from 400 long acting to 100 short acting and got the tinnitus i had in accute back. But only for a few days. I will make some kind of taper of the short acting stuff.

Prescribing quentapine for sleeping issues, even not that bad stuff, is very common here in Sweden. 

I think you're right there with it eventually will cause problems. 

I think they should let weed be legal here as in many places in the US. I smoked as a teen and slept like a baby

[[re...]]

Man I would figure Sweeden would be WAY further than we are in the legalization of weed. Usually Europe is always more progressive than the US. 

[[re...]]

The only thing with weed is as it gets more trendy and popular in medical circles, holistics, psychiatry,  and government subsidized, that I think big pharma will try and get their hooks into it and it will become way to strong and other things in it so they can get their patent rights. It is so disgusting. 

[[PE...]]

7 minutes ago, [[r...] said:

Man I would figure Sweeden would be WAY further than we are in the legalization of weed. Usually Europe is always more progressive than the US. 

It's different all over Europe. Germany just made it legal to smoke and carry 25 gram and grow for own use. Portugal, Holland is other countries. I don't know about the UK but i think it's like Sweden.

I would definitely smoke sometimes if it was legal. Now it's a hassle.. have to order from darkweb or hook up with some stoners. To my guess it will be legal here in 10 years.

[[PE...]]

1 minute ago, [[r...] said:

The only thing with weed is as it gets more trendy and popular in medical circles, holistics, psychiatry,  and government subsidized, that I think big pharma will try and get their hooks into it and it will become way to strong and other things in it so they can get their patent rights. It is so disgusting. 

It already happend look at the billion industry in Canada! 

They weed stocks have gone sky rocket the last decade!

Making it legal to grow for home use helps that. It's very easy to grow.