Bailey: Acute Paxil Withdrawal Symptoms

[Bailey]

@LotusRising One more question about the Queen of Thrones castor oil pack. They advertise it as a liver pack and show it placed over the liver area.  Do you also put it there or do you place it more over your abdomen/intestines? Just wondering where it's worked best for you in terms of digestion/elimination purposes. 

[LotusRising]

For the purpose of elimination/bowel support, I used it over my entire abdomen. I would try to avoid the liver area, since you don't really want to encourage detoxification.

[Bailey]

@LotusRising That makes total sense. Thank you!

[Bailey]

@LotusRising I am struggling so much. I keep having excruciating days. I feel like I'm broken and will never get well. I was starting have more windows here and there before the past 7 day but now I'm much worse. One horrific day after another. It seems like at this point I should be seeing signs of healing and hope. I feel so despondent. It feels like nothing will change, that there is no help for me. I'm thinking I need to try something different but don't know what that would be. I keep having the feeling of wanting to run out in front of traffic to make the madness stop. I want to be out of my body. I also want to go to the ER but that's hopeless. Akathisia is so strong. I thought things would be getting a little lighter by this point. 

[LotusRising]

@Bailey

 

I'm so sorry you're feeling this way. I really do remember this. Please believe there is always hope. I had very few windows in the beginning and I didn't even understand what people were talking about when they spoke of these elusive times where there were no symptoms. Every day and night was the same and I felt desperate, hopeless and alone. These feelings were made even worse when I did finally present to ER, where their only solution was to "come off the drug", as though I didn't already know this. It was at that point, that I really just focused on getting through the next day, hour or minute. It really isn't an easy journey, but you will come out stronger at the end of it and grow to appreciate so many more of the little things. 

 

9 minutes ago, Bailey said:

I was starting have more windows here and there before the past 7 day but now I'm much worse.

The waves are awful, but those windows really are good signs of healing, where for that period of time, your nervous system got things right. That will keep happening. 

 

Did I already give you the link to Baylissa's evening meditation? Honestly, I listened to it almost every night. Baylissa Evening Meditation

 

What is your support system like? Do you have anything to distract you from your symptoms? Any changes to GI stuff yet?

[Bailey]

@LotusRising At the ER they want to put me psych in-patient. That's what broke me in the first place. They promised to get my meds right when I was in withdrawal after a doctor tapered me too quickly many years ago. They switched and added many meds. But something in me wants to go the hospital anyway to be cared for. It's hard knowing there's not a place to go for help. 

I'll listen to Baylissa. My support system is my sister who really believes me. I thought I'd have more and more windows (not entire days but parts of days where I could at least breathe and regroup). The past 10 days I've had fewer and fewer. It feels like I'm going backwards. I hope I make it. 

 

In the moment, I'm just trying to stream some programs to distract. I'm moving around too much fro anything else. Normally I try to get out of the house a little bit every day. I went for a 60minute walk before things got as crazy as they are now. 

 

The GI symptoms are back and forth. I feel like there's been a little progress there. My appetite has picked up but I have to be careful about eating very much because it seems to make me feel worse even though it's protein and fiber. 

 

[Catina7]

43 minutes ago, Bailey said:

@LotusRising I am struggling so much. I keep having excruciating days. I feel like I'm broken and will never get well. I was starting have more windows here and there before the past 7 day but now I'm much worse. One horrific day after another. It seems like at this point I should be seeing signs of healing and hope. I feel so despondent. It feels like nothing will change, that there is no help for me. I'm thinking I need to try something different but don't know what that would be. I keep having the feeling of wanting to run out in front of traffic to make the madness stop. I want to be out of my body. I also want to go to the ER but that's hopeless. Akathisia is so strong. I thought things would be getting a little lighter by this point. 

 

I can relate to this so much!  When I tapered too fast and experienced a horrible crash with severe internal akathisia I wanted to step in front of a tractor trailer and just end it.  I went to the ER multiple times, many times in the middle of the night, because I was suffering so much.   I ended up in the psych ward for a week, which I think at the time might have been a good thing because I was away from home and couldn't harm myself.  I am SOOOO glad I endured what I went through and did not un-alive myself.  Things eventually did improve but it took a long time.  Please know that things will get better.  Chris Paige, a taper coach, had akathisia for a long time but is now recovered.  I suggest you listen to some of his YouTube videos and also some videos from Angie Peacock and Dr. Josef Witt-Doerring.  When we're suffering so badly we feel we will NEVER get better, but it's NOT TRUE.  And if we give up, then we'll never get to experience getting through the bad times and coming out at the other end.  This will no doubt be the hardest thing you'll ever have to endure, but you will improve in time!  

 

Keep hanging on with every fiber of your being.  It will be worth it in the end!  

Edited February 4 by Catina7

[Catina7]

44 minutes ago, Bailey said:

@LotusRising I am struggling so much. I keep having excruciating days. I feel like I'm broken and will never get well. I was starting have more windows here and there before the past 7 day but now I'm much worse. One horrific day after another. It seems like at this point I should be seeing signs of healing and hope. I feel so despondent. It feels like nothing will change, that there is no help for me. I'm thinking I need to try something different but don't know what that would be. I keep having the feeling of wanting to run out in front of traffic to make the madness stop. I want to be out of my body. I also want to go to the ER but that's hopeless. Akathisia is so strong. I thought things would be getting a little lighter by this point. 

 

Deleted Duplicate Post.

Edited February 4 by Catina7

[LotusRising]

3 minutes ago, Bailey said:

But something in me wants to go the hospital anyway to be cared for. It's hard knowing there's not a place to go for help. 

Yes, I understand. The hospital is meant to be filled with people that help us, but more medication is likely not the answer. I realized early on that I needed to dig really deep within myself to get through. I'm glad you have a support person that believes you, this is really quite essential for getting through the tough stuff. 

 

Have you looked into a therapist at all? I was just watching an Angie Peacock video the other day and there are definitely therapists out there that are psych drug withdrawal informed. Even Angie her myself might be worth speaking to. Might be something to look into?

[Bailey]

@LotusRising I would very much like to find a trauma-informed therapist. I did talk to Angie a few weeks ago and she didn't have recommendations along those lines. Angie is great, though, and is an inspiration. 

 

I've carried trauma for a long time since going in-patient 12 years ago. No one would believe it was the medicine. Therapists always want to talk about family, the place they are comfortable with. I've talked about family 1000 times as a result. 

[LotusRising]

@Bailey

 

Angie did a recent interview with Anne Guy, a therapist in the Uk. You should check it out. I agree, we don't necessarily need to rehash our family trauma, and I think Anne held a similar belief. Perhaps reach out to her, it's possible she might have a recommendation as well.

[Bailey]

@Catina7 Thank you so much. It is so excruciating and feels so hopeless, especially since things feel like they've gotten worse. The tractor trailer thought is there ALOT. Thank you for your words of encouragement.  

[Catina7]

@Bailey, hold on and don't let go.  I know it's hard, but one day there will be someone else in your exact same shoes and they will need YOUR advice.

 

Big Big Hugs.... ❤️

[Bailey]

@Catina7 Thank you so very much for your encouragement. 

[Catina7]

12 minutes ago, Bailey said:

@Catina7 Thank you so very much for your encouragement. 

 

You're more than welcome.  We're all in this thing together and need each other to keep going.  You're going to get through this!  🌹

[Xcaretuk]

3 hours ago, Bailey said:

@LotusRising I am struggling so much. I keep having excruciating days. I feel like I'm broken and will never get well. I was starting have more windows here and there before the past 7 day but now I'm much worse. One horrific day after another. It seems like at this point I should be seeing signs of healing and hope. I feel so despondent. It feels like nothing will change, that there is no help for me. I'm thinking I need to try something different but don't know what that would be. I keep having the feeling of wanting to run out in front of traffic to make the madness stop. I want to be out of my body. I also want to go to the ER but that's hopeless. Akathisia is so strong. I thought things would be getting a little lighter by this point. 

 

3 hours ago, Bailey said:

@LotusRising I am struggling so much. I keep having excruciating days. I feel like I'm broken and will never get well. I was starting have more windows here and there before the past 7 day but now I'm much worse. One horrific day after another. It seems like at this point I should be seeing signs of healing and hope. I feel so despondent. It feels like nothing will change, that there is no help for me. I'm thinking I need to try something different but don't know what that would be. I keep having the feeling of wanting to run out in front of traffic to make the madness stop. I want to be out of my body. I also want to go to the ER but that's hopeless. Akathisia is so strong. I thought things would be getting a little lighter by this point. 

Hi Bailey,

When you get those windows you get hope and then it gets taken away from you. I had a horrible day yesterday and there is not one day that goes by that I don’t get my morning Akathasia as I call it and all day head pain, back pain. My body feels it’s under so much strain. But I have had some windows and I listen to the moderators and their stories which keeps me going. I still think, am I going to get better? I think because our symptoms are so severe and long lasting we think we are going to be the ‘one’ that stays like it especially when we have a severe run of waves. You are not alone and the moderators have been there and even though it’s been an almighty struggle they have improved. Keep hanging in there 🌺

[Bailey]

@Xcaretuk I still have terrible morning akathisia, too.  I'm so sorry you have to suffer through so much pain throughout the day. 

Thank you so much for your encouraging words. I really do feel like the one who won't heal and that I won't make it. This is so hard but it sure helps to have others who have gone through it and survived. 

[Xcaretuk]

1 hour ago, Bailey said:

@Xcaretuk I still have terrible morning akathisia, too.  I'm so sorry you have to suffer through so much pain throughout the day. 

Thank you so much for your encouraging words. I really do feel like the one who won't heal and that I won't make it. This is so hard but it sure helps to have others who have gone through it and survived. 

 

1 hour ago, Bailey said:

@Xcaretuk I still have terrible morning akathisia, too.  I'm so sorry you have to suffer through so much pain throughout the day. 

Thank you so much for your encouraging words. I really do feel like the one who won't heal and that I won't make it. This is so hard but it sure helps to have others who have gone through it and survived. 

It is made worse by us feeling that most of the medical profession cannot help us. However, it really is the people that have been through it that are the ‘experts’. Mark Horowitz is a doctor (Psychiatrist in Training) who has been through the horrors of withdrawal and this fabulous group helped him taper safely (he has not quite finished)  He co-wrote The Maudsley Deprescribing Guidelines (which has just come out) advising hyperbolic tapering. He also published in the medical journal The Lancet which helped I believe change the UK guidelines. Check with the moderators though for their opinion. You and I will make it…

[LotusRising]

@Bailey How are you doing?

[Bailey]

@LotusRising I am struggling so much. It's another extreme day. I don't understand why there wouldn't be more evidence of healing at this point. It's been all sorts of terror and akathisia all day -- lots of jerking, especially head and neck. I wonder if I'm doing something wrong of if I should be doing something different. I wonder if I'm going to make it. Thank you so much for checking. 

[LotusRising]

@Bailey

 

I'm sorry to hear you're not getting any relief.

 

1 hour ago, Bailey said:

I wonder if I'm doing something wrong of if I should be doing something different. I wonder if I'm going to make it.

I don't know that you're necessarily doing anything wrong. It can sometimes take quite some time to stabilize, longer than we like unfortunately. I do think you will absolutely make it though.

 

What is happening with the GI stuff - any changes there?

 

What are you doing during the day to help you cope? Do you get outside?

[Bailey]

@LotusRising Thank you for the encouragement. I feel forever broken and without hope right now but it helps to hear from others who have made it -- that you think I'll make it, too. 

 

GI pain is better. Still extreme problems with eliminating but I'm not in as much pain as I was. 

I go for a walk every morning. I have akathisia and I head out early to try to tamp it down at least somewhat. I also try to get out around noon. My sister's Catholic church is nearby and they have a noon mass every day. I'm not actually Catholic but I go most days anyway to get out and be distracted. It can also be comforting. Today was too extreme for me to go, however. And when things are extreme and I'm shaking and convulsing, I'm unable to be still enough for other things like yoga or breath work. I do try to do breath work but it's hard when things are so acute. I also stream some content with headphones on just for distraction even though I can't really pay attention to it.  I can say that being able to watch content is an improvement. I wasn't able to watch or listen to anything for almost 2 months. 

[Xcaretuk]

19 minutes ago, Bailey said:

@LotusRising Thank you for the encouragement. I feel forever broken and without hope right now but it helps to hear from others who have made it -- that you think I'll make it, too. 

 

GI pain is better. Still extreme problems with eliminating but I'm not in as much pain as I was. 

I go for a walk every morning. I have akathisia and I head out early to try to tamp it down at least somewhat. I also try to get out around noon. My sister's Catholic church is nearby and they have a noon mass every day. I'm not actually Catholic but I go most days anyway to get out and be distracted. It can also be comforting. Today was too extreme for me to go, however. And when things are extreme and I'm shaking and convulsing, I'm unable to be still enough for other things like yoga or breath work. I do try to do breath work but it's hard when things are so acute. I also stream some content with headphones on just for distraction even though I can't really pay attention to it.  I can say that being able to watch content is an improvement. I wasn't able to watch or listen to anything for almost 2 months. 

Hi Bailey,

”.  I can say that being able to watch content is an improvement. I wasn't able to watch or listen to anything for almost 2 months”

 Hold onto this as even though it doesn’t seem much it really is…. I was the same in the beginning I wasn’t able to concentrate on anything except how I felt. When a few tiny windows of lesser anxiety started to kick I tried to hold onto it. Some days are a bit better and some days are not but they are a bit better than in the start. My withdrawal symptoms kicked in I believe in September though more physical then and then all hell broke loose in October so I am a little in front of you. The improvements are small and slow and looking at the other people’s stories it takes time and we are so individual…Distraction is can help, though can be hard but you will get there…😘

[LotusRising]

22 minutes ago, Bailey said:

I'm not in as much pain as I was

 

22 minutes ago, Bailey said:

I can say that being able to watch content is an improvement. I wasn't able to watch or listen to anything for almost 2 months. 

 

These are definitely notable improvements. I wasn't able to do much in the early months either. TV was too stimulating and I could barely tolerate people talking in the next room. It's great that you're able to do both now. This is a sign that your nervous system is adjusting and healing. 

 

Do you journal? I found it helpful to highlight the windows, even if they were very short because it gave me something I could look back on. I also started writing out 3 things I was grateful for at the end of every day. Just little things ... they all add up. Maybe something for you to try, if you're not already doing it.

[Bailey]

@LotusRising I don't journal, per se. But I'm trying to keep a bit of a  daily log. Sometimes it's simply a color for the day -- red (worst), orange, yellow, green. So many red or "double red" days. Someone on this site gave me the color idea. I'm also trying to get more detailed with respect to each symptom -- a color for each symptom each day. It's not terribly sophisticated but I wanted something easy to be able to see patterns and see improvements, windows. I've also started a gratitude list.  I'm not always daily with it but am trying. Thank you again for your support and encouragement. 

[Bailey]

@Xcaretuk Did you give me the color idea? Give each day a color ranking? I can't remember. Thank you for your encouragement. It's really hard to see real improvement. I am trying to hold onto the improvements I do see. Yeah, I'm a bit behind you. The bottom dropped out in November for me. It helps me to see your signs of improvement since we're not that far apart. 

[Xcaretuk]

12 minutes ago, Bailey said:

@Xcaretuk Did you give me the color idea? Give each day a color ranking? I can't remember. Thank you for your encouragement. It's really hard to see real improvement. I am trying to hold onto the improvements I do see. Yeah, I'm a bit behind you. The bottom dropped out in November for me. It helps me to see your signs of improvement since we're not that far apart. 

It wasn’t me that gave you the colour idea but it’s a great idea, especially in the beginning. My husband put together an excel sheet for my symptoms and we grade them out of 10 daily…

[Bailey]

@Xcaretuk When my brain and body allow me to, I'd like to start ranking out of 10 as well. 

[Xcaretuk]

2 hours ago, Bailey said:

@Xcaretuk When my brain and body allow me to, I'd like to start ranking out of 10 as well. 

Yes I couldn’t do it in the beginning. My husband did it…

[ForestLily]

2 hours ago, Bailey said:

Someone on this site gave me the color idea. I'm also trying to get more detailed with respect to each symptom -- a color for each symptom each day.

 Hi Bailey! I might have been the one to suggest the colors? Hopefully I'm not taking credit for someone else's recommendation. 😄

I probably mentioned that it was helpful to me in seeing progress, but I also want to make it clear that it was many months before I was able to go back and see when I started to piece together two or more "green" days in a row (or that might look like two orange days, yellow days, etc). The pattern was also very random, but suddenly there was enough green that I was able to start my taper again.

 

You might be looking at a lot of red at the moment, but please try not to feel discouraged! I do think that keeping track of symptoms in whatever way you are able to will provide a helpful record. If I had tried to do much more than just sit down every couple of days and put in a color and maybe a note or two, I don't think I would have kept up with it. 

 

I'm so sorry that you're having to go through this, but it does sound like you're doing all the right things to support your body and nervous system as they heal. You've demonstrated so much strength and resilience already - you've got this. Please know that I, along with others here, are cheering you on and sending our support. ❤️

[Bailey]

8 hours ago, ForestLily said:

 Hi Bailey! I might have been the one to suggest the colors? Hopefully I'm not taking credit for someone else's recommendation. 😄

Yes, now I remember it was you. I'm grateful for this easy way to keep track. I hope lighter days are ahead. Right now "orange" days would be an improvement. Thank you for your encouragement, that it didn't happen right away and not to despair. I so appreciate you and your support. 

[savinggrace]

18 hours ago, Bailey said:

@Xcaretuk Did you give me the color idea? Give each day a color ranking? I can't remember. Thank you for your encouragement. It's really hard to see real improvement. I am trying to hold onto the improvements I do see. Yeah, I'm a bit behind you. The bottom dropped out in November for me. It helps me to see your signs of improvement since we're not that far apart. 

Hi Bailey,

 

I noticed “manufacturer” change on Xanax in your signature. I had to take brand name meds for a decade or more because the generic manufacturer changes (monthly) were destabilizing me.  We have been paying an unfathomable about out of pocket with each refill  to get brand name. In the last year my Valium price went up to $2000/3 months And it was clear it is being discontinued so I have been “crossing over” to TEVA generic over time. It’s been a very hard transition. The inactive ingredient in the generic made me feel immediate intense withdrawal and I am crossing over from brand to generic at .3mg/month.  What I am doing is shopping around to get the TEVA manufactured diazepam every month and so far I have been successful. So just in case you didn’t know this, it is possible to help stabilization by shopping for the same manufacturer from month to month. Each manufacturer’s inactive ingredients affect absorption and can be perceived, if hyper-sensitive as a (small-big) cut. 
 

I have not been able to taper anything while “crossing over” as the destabilization has been all I can handle. It’s been a huge but necessary setback for me but the brand name is no longer available so I have no choice. 
 

I haven’t read your whole thread but I hope this is helpful. 
 

Best wishes

Grace

[Bailey]

2 hours ago, savinggrace said:

Hi Bailey,

 

I noticed “manufacturer” change on Xanax in your signature. I had to take brand name meds for a decade or more because the generic manufacturer changes (monthly) were destabilizing me.  

Yeah, this change was unavoidable as the first manufacturer's supply is limited and very hard to come by. I had been requesting that particular manufacturer. Going forward, I'm going to request the manufacturer I was switched to in December. It's awful to have to worry about these things. I'm sure the change impacted me though I was already in such terrible shape that it was hard to tell what was doing what. 

[Bailey]

@LotusRising My confidence is shaken. I spoke to my doctor yesterday, a holistic psych who I thought would be more understanding. She made me feel like I'm "failing" withdrawal because I can't take the many (high dose) supplements she wants me to take. She was impatient with me and didn't take my thoughts and fears seriously. She hasn't been through withdrawal and doesn't understand what a frightful place it is. My brain in this compromised state isn't like hers and can't make sense of things like a non-withdrawal brain. She also has a long list of things she thinks I should be doing during the day and those things are not accessible to me at this time. I'm truly doing what I can. I wish I could get some positive feedback for what I am doing.  Whenever I tell her what I am doing to manage, she basically tells me I need to be doing things differently instead of providing hope and affirmation. I guess that's why I'm posting, for perspective and hope and to process. I woke up at 3 and had all these things going through my mind in a loop for hours, which is a withdrawal thing for me (ruminating, fear).

[LotusRising]

@Bailey,

 

I'm sorry this was your experience ❤️  It's really hard to find people understanding of our unique needs and since this person doesn't sound psych withdrawal informed and hasn't gone through this experience herself, it's of course difficult for her to understand. 

 

I want to be clear that no one is 'failing' withdrawal. We are all on different paths and our coping skills, and even ability to cope, changes with time. I wasn't able to do much in the beginning. I spent a lot of time colouring and just getting by, but as some of the symptoms started to improve just a teensy bit, I began pushing a little here and there to do more things.

 

What are some of the things she thinks you should be doing? Is there one thing from the long list that you could start working toward? Sometimes breaking things down into smaller pieces can make it less overwhelming, which I sense is how you're feeling right now.

 

As for supplements, you will have to be the best judge of that. I know I've been very cautious about introducing new ones, but I know holistic psychiatrists will do lab tests to see where you're deficient, which in my opinion, may actually be beneficial depending where you are in your journey. If it were me, I would be holding off until I was more stable. And again, all we recommend on this site is magnesium and omega 3's. Do you take any supplements currently?

[Bailey]

47 minutes ago, LotusRising said:

@Bailey,

 

I'm sorry this was your experience ❤️  It's really hard to find people understanding of our unique needs and since this person doesn't sound psych withdrawal informed and hasn't gone through this experience herself, it's of course difficult for her to understand. 

She was quite impatient with me. I was longing for at least a smidge of support and hope for this excruciating process. It was really about what I wasn't doing, however. And also, that my fears about not getting well or other questions (dosing) were exasperating to her. 

47 minutes ago, LotusRising said:

What are some of the things she thinks you should be doing? Is there one thing from the long list that you could start working toward? Sometimes breaking things down into smaller pieces can make it less overwhelming, which I sense is how you're feeling right now.

A long list was given to me: getting out of the house for several hours, going to the gym, going to a yoga studio daily, many different kinds of breathwork, meditation  (insistent on a very specific meditation app), sauna, epsom salt baths, aromatherapy, reading specific books (insistent about this), all sorts of dietary recommendations, massage and acupuncture multiple times a week, therapy, creating a vision board and more. All good suggestions but overwhelming when the measure of success is engaging in all of them.  I wrote out a list of 14 things I am doing out of the list, which is 3 or 4x as long, and showed it to her hoping she would see I'm really trying. It included walking early in the morning, getting out later in the day, breath work, following every last dietary recommendation given me, epsom salt baths with aromatherapy, a list of hopes for the future (a vision board is beyond me), books I'm attempting to process -- I've explained I can't read at this point but have downloaded an audio book to try and listen to it. I included other things I'm doing that I believe are helpful, too, though not on her list. I was hoping for some kind of positive feedback to encourage me but it seems to only come back to what I'm *not* doing. I know this sounds like I rant and I suppose it is b/c I'm trying to process it all. In this state, it's hard for me to shake things off. Things I would have normally been able to dismiss when not in acute withdrawal. 

47 minutes ago, LotusRising said:

 

As for supplements, you will have to be the best judge of that. I know I've been very cautious about introducing new ones, but I know holistic psychiatrists will do lab tests to see where you're deficient, which in my opinion, may actually be beneficial depending where you are in your journey. If it were me, I would be holding off until I was more stable. And again, all we recommend on this site is magnesium and omega 3's. Do you take any supplements currently?

I'm not taking supplements right now. Even when I'm in good health, I'm pretty sensitive and careful. I was taking a multi and a B complex before this all started, however. . Now I'm too hypersensitive to risk anything given past experiences. She wanted me to take 800mg of magnesium, NAD infusions, possibly ketamine (low dose, apparently), L-Theanine and fish oil. I did try the fish oil but had a reaction that may or may not be related and decided to hold off for now. I've been eating a good amount of salmon and sardines instead to hopefully bring that part in with food. I haven't had bloodwork done. I'd like to. My morning akathisia makes a fasting blood draw incredibly difficult and I was hoping I'd stabilize a bit more before attempting that. I certainly wouldn't be able to drive or even sit still right now for the draw.

So much information here -- I apologize. I'm both having a hard day and trying to make sense of things so I'm not being precise but instead writing everything out.