49 months off of all drugs, suffering terribly

[[dp...]]

 

I'm sorry, it's very difficult to really explain my story very well, but I was just wondering if it is common/normal or if it is something that does happen with people, to be off this long and be suffering so terribly. Back in 2014, I began a taper off of 4 drugs,.. 15mg of Valium, 30mg of Prozac, 20mg of Hydrocortisone and Thyroid meds. I finished up my taper in 2019, and am now 49 months off of everything. 15mg of Valium was tapered over a period of 2yrs, microcutting from 2014-2016. Steroid/thyroid meds from 2016-2017, and Prozac from 2017-2019, microcutting. It's only gotten worse every year off of Prozac. I was somewhat steady when I reached 0mg of Prozac,.. in w/d and dealing with symptoms as I have for years due to previous history going back to 2007, but not like this. 

 

It's non stop akathisia, panic, anxiety, severe weakness and fatigue, digestive pain, cystitis pain, feeling like my body is going to explode, nonstop intrusive thoughts like I'm going nuts, air hunger, burning, stinging, emotional outbursts, tremors, blurred vision, body nerve pain, dehydration from constant urination. It's like I'm living in a microwave, pressure cooker, fire pit being tortured daily and it's not letting up. The sensitive CNS is making it so there are so many food reactions, reactions to stress, etc.. that stuff like that can throw me into chaos for weeks. 

 

Has anyone ever dealt with this? A bit over 4 years off after tapering? Sorry, I'm desparate. When does the CNS calm down.. if anyone can give some advice or point me to a thread/threads to deal with post acute w/d suffering this badly this long off, I'd appreciate it. Thank you ❤️

 

[[Ho...]]

Has this been going on for years? Was there any break in between, from 2019 to 2023? It hasn't been this way for years, has it?

I've been on these boards for several months and there are plenty who felt healed and years later got hit with a nasty wave. I'm wondering it that's what'd going on with you. It's hard to tell. Those that posted about unexpected, years-out waves ran the gamut from one month (seems sorta common) to three months (less common.)

I think we may remain sensitized for years. I don't want to see you suffer like this! 

[[ia...]]

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

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

Has this been going on for years? Was there any break in between, from 2019 to 2023? It hasn't been this way for years, has it?

I've been on these boards for several months and there are plenty who felt healed and years later got hit with a nasty wave. I'm wondering it that's what'd going on with you. It's hard to tell. Those that posted about unexpected, years-out waves ran the gamut from one month (seems sorta common) to three months (less common.)

I think we may remain sensitized for years. I don't want to see you suffer like this! 

 

This was my question also. @[dp...] Thank you for giving the context of your taper. It sounds like you really did your due-diligence in your taper - going slow but steady. I'm so so sorry for all that you're going through right now. All your symptoms sound realy challenging. My questions are consistent with @[Ho...]'s: For the last four years have your symptoms been this intense? Or, did they start to ramp up more in the last month, two, or last year? 

Please don't apologize. We understand the desperation. Does anything seem to help when you're experiencing these symptoms with such intensity? The one thing that helped me during symptoms of such intensity was taking walks and trying to put on an audiobook. I know it's not a cureall but there were times it distracted me even 10% and that was enough to keep me from going 'crazy'. We're thinking of you... here to support you. 

[[dp...]]

8 hours ago, [[H...] said:

Has this been going on for years? Was there any break in between, from 2019 to 2023? It hasn't been this way for years, has it?

I've been on these boards for several months and there are plenty who felt healed and years later got hit with a nasty wave. I'm wondering it that's what'd going on with you. It's hard to tell. Those that posted about unexpected, years-out waves ran the gamut from one month (seems sorta common) to three months (less common.)

I think we may remain sensitized for years. I don't want to see you suffer like this! 

Hey, thank you for replying. It's been going on for years and getting more intense, starting when I jumped off Prozac in 2019,.. every year it's gotten more intense. More sensitized cns, more akathisia, more reactions, etc. Thing is though, I've had a history of being very sick from these drugs going all the way back to 2007,.. with a bunch of c/ts, reinstatements in there,.. i was c/ted off Lexapro in 2009, reinstated, on celexa a month later, basically c/ted off celexa in 2011,.. put on and then c/ted off xanax in 2012, etc.. that type of stuff,.. and then drugged up heavily in 2012,.. and then proceeded to taper everything in 2014... so it's been hell for a long time,.. and I guess all those drugs covered the sensitivity and issues with the c/ts/reinstatements, etc.. and now I'm feeling it 4 yrs off? It's just terrible. Thanks for responding,.. I'd just love to know if there are others who are suffering this bad this far off. 

[[dp...]]

6 hours ago, [[i...] said:

This was my question also. @[dp...] Thank you for giving the context of your taper. It sounds like you really did your due-diligence in your taper - going slow but steady. I'm so so sorry for all that you're going through right now. All your symptoms sound realy challenging. My questions are consistent with @[Ho...]'s: For the last four years have your symptoms been this intense? Or, did they start to ramp up more in the last month, two, or last year? 

Please don't apologize. We understand the desperation. Does anything seem to help when you're experiencing these symptoms with such intensity? The one thing that helped me during symptoms of such intensity was taking walks and trying to put on an audiobook. I know it's not a cureall but there were times it distracted me even 10% and that was enough to keep me from going 'crazy'. We're thinking of you... here to support you. 

Hey, thanks for responding as well. So the first year off was super rough, but every year after that got worse... more senstiive cns, more anxiety, constant fight or flight,.. it's taken a toll on my body physically,.. the constant pain and fight/flight/akathisia has exhausted my body and I'm basically stuck in bed on top of it with extreme weakness and exhaustion... and very bad dsyautonomia type symptoms,.. the frequent urination and dehydration being terrible. It's just this vicious cycle of nerve pain, akathisia, fight/flight stuff and reactions that just don't seem to be calming down. The only thing that has given me any help at times is sitting in the shower with hot water to help calm things a bit. Thanks for the suggestions,.. going to keep thinking of the little things I might do to take the edge off and give my body some room to settle down. 

[[dp...]]

I need to add as well, I was symptomatic and sick during the tapers and whatnot from 2014-2019,..  I was able to work at a caretaking job from 2017-2019 and ran an ebay business, but when I got off Prozac, my body exploded... I had been on SSRIs essentially from 2007 to 2019, .. so it makes sense I guess that'd be a worse one for me than the benzo? .. basically I was somewhat functional and life was somewhat tolerable while on the drugs and until I was off for I'd say about a year... it was hell but it wasn't like "Oh man I might die from this and I can't get any relief" hell. Those drugs really were covering stuff up seems like. 

[[or...]]

I have just a feeling, but out of the millions that have been givin prescriptions, and then got off them, I'm just sure there are others in the same boat.  I am so glad you are here, I don't know if you are new or not on BB.  I've found so much kindness here, and sometimes it takes awhile for people to find threads/posts because the forum has had changes which are very positive, but lots of us are learning the ropes.  But I know you'll be helped with what you are going through.  I'm new here, just 5 months on tapering.  Sounds to me like you did an excellent job tapering off all that, and doing it the right way as well.  I don't know anyone so far that hasn't had protracted issues after they jump off, and every person has similarities but yet different time-frames.

Again, I'm just glad you are here, and even if someone doesn't have the same story, I look for the similarities, not the differences.  I wish I had more to share with you, but I wanted to reply because I greatly admire and respect you, I also feel you are going to recover, I truly believe that, hang on, and keep in touch with us, so we can all help each other along our journey, Denise ❤️🙏

[[or...]]

LOL, ok, I'm gonna lose it for sure, what a great username @[Pl...] I hope this makes others smile, because I know I sure needed one.  My heart really goes out to you @[dp...]

[[Pl...]]

Hi Daniel,

I have been reading most of the night because I am in the same situation as you at 3 years out…I was wondering how you were and I have my answer…

This could be our limbic system, our brain stuck in a stress response and we need to retrain it…

I am going to ask this stupid question…are you able to do anything to try to calm the system…

Me I meditate a lot…but like you I am wondering what is going on to be this strong still…

 

 

[[dp...]]

2 minutes ago, [[o...] said:

I have just a feeling, but out of the millions that have been givin prescriptions, and then got off them, I'm just sure there are others in the same boat.  I am so glad you are here, I don't know if you are new or not on BB.  I've found so much kindness here, and sometimes it takes awhile for people to find threads/posts because the forum has had changes which are very positive, but lots of us are learning the ropes.  But I know you'll be helped with what you are going through.  I'm new here, just 5 months on tapering.  Sounds to me like you did an excellent job tapering off all that, and doing it the right way as well.  I don't know anyone so far that hasn't had protracted issues after they jump off, and every person has similarities but yet different time-frames.

Again, I'm just glad you are here, and even if someone doesn't have the same story, I look for the similarities, not the differences.  I wish I had more to share with you, but I wanted to reply because I greatly admire and respect you, I also feel you are going to recover, I truly believe that, hang on, and keep in touch with us, so we can all help each other along our journey, Denise ❤️🙏

Yeah I do know a few people who feel this intense,.. from the facebook support groups,.. it doesn't seem like very many but one of my close friends I made through those FB groups went through similar things. It's just such a surreal type of experience, as I thought I was out of the woods years ago from when I had c/ts back then,.. because I was tapering this time around.. it's just ridiculous. I have a history on this board and posted a lot years back,.. last time being 2020 when I was a year off Prozac,.. and it helped me get through a lot,.. I just thoguht the next time I'd be posting here it'd be a success story,.. not a "dear God please help I'm 4 yrs off and feel this way" story. There are other things going on because of all of the meds atm too,.. my liver really hurts a lot and has the past few years and kidneys do as well,.. there are things I know from my natural healing background to do for those,.. but the food/herb rxns make that impossible atm. Thanks for your kind words,.. it's helped me to at least unload some of the pain and thoughts here the past day,.. it is just such a hard fight. Thank you <3

[[Pl...]]

I am in David Powers program benzo school, he says that this is because of the limbic system and we need to bring it back to calm and reassurance…

But since my gut is so bad and my whole system is like electric and on fire I wonder if there is not anything else going on…

[[Pl...]]

Do you want to text me on messenger?

[[dp...]]

3 minutes ago, [[P...] said:

Hi Daniel,

I have been reading most of the night because I am in the same situation as you at 3 years out…I was wondering how you were and I have my answer…

This could be our limbic system, our brain stuck in a stress response and we need to retrain it…

I am going to ask this stupid question…are you able to do anything to try to calm the system…

Me I meditate a lot…but like you I am wondering what is going on to be this strong still…

I've tried everything to calm things, and seems like the more I actively try, the more anxious and revved everything gets. Like trying to do the neural retraining has just made me more anxious and more revved,.. it's like my mind will race more as I actively try to do anything to calm it down. Earthing everyday helps me and is prob the only thing that doesn't have a downside for me. Yeah I didn't think I'd be rough like this this far out, but hey, Lol.. trying to tell myself it's just going to be part of an awesome testimony at some point. CNS really needs to settle down tho.

[[or...]]

3 minutes ago, [[d...] said:

Yeah I do know a few people who feel this intense,.. from the facebook support groups,.. it doesn't seem like very many but one of my close friends I made through those FB groups went through similar things. It's just such a surreal type of experience, as I thought I was out of the woods years ago from when I had c/ts back then,.. because I was tapering this time around.. it's just ridiculous. I have a history on this board and posted a lot years back,.. last time being 2020 when I was a year off Prozac,.. and it helped me get through a lot,.. I just thoguht the next time I'd be posting here it'd be a success story,.. not a "dear God please help I'm 4 yrs off and feel this way" story. There are other things going on because of all of the meds atm too,.. my liver really hurts a lot and has the past few years and kidneys do as well,.. there are things I know from my natural healing background to do for those,.. but the food/herb rxns make that impossible atm. Thanks for your kind words,.. it's helped me to at least unload some of the pain and thoughts here the past day,.. it is just such a hard fight. Thank you <3

I can't agree more with "helped me to unload", sometimes we really need to do that, and sometimes we try and hang onto it all by ourselves.  Sometimes the best therapy of all for me is to break down and have a crying and yelling fit, not too loud, can't let the neighbors hear me in this apt. building, heehee   I'm glad I got on here, can I call you Daniel as well?  It's such a great name.  I was so glad to see @[Pl...] 's reply since they have been through the same length, almost, of protracted as you have!  What a blessing that seems like to me, and you've been friends for awhile   One thing I've missed so much is having friends, real friends that will listen, and especially ones that are in similar situations, or been there.  I closed off from people because I was so messed up on the Clonazepam, and now I know how messed up I was because my brain is starting to clear since learning to taper here on BB.

[[be...]]

@[dp...] hey I don’t have aka but I do have some other stuff going on and talked with Chris Paige yesterday he was very helpful also suffered from terrible aka for years maybe talking with him would help you find some hope being able to relate praying for you friend!

[[su...]]

Im 4.5 years off and I have all these things. I Ct'ed 20 years of prozac and then did a 26 month taper from Valium whilst in acute hell from the prozac. My withdrawal has been absolutely excruitating. I dont think its just a nervous system injury, I think it's caused total immune system dysregulation too. So all the things I have like the frequent urination/extreme bladder pain and pressure, food reactions etc are actually mast cell problems and immune dysregulation. Im still very "acute" but I have done some things that have helped my situation somewhat. Just to let you know you are not alone being this sick this far out. 

[[dp...]]

53 minutes ago, [[s...] said:

Im 4.5 years off and I have all these things. I Ct'ed 20 years of prozac and then did a 26 month taper from Valium whilst in acute hell from the prozac. My withdrawal has been absolutely excruitating. I dont think its just a nervous system injury, I think it's caused total immune system dysregulation too. So all the things I have like the frequent urination/extreme bladder pain and pressure, food reactions etc are actually mast cell problems and immune dysregulation. Im still very "acute" but I have done some things that have helped my situation somewhat. Just to let you know you are not alone being this sick this far out. 

Thank you for sharing, that helps a lot to hear. I think so much of this is just knowing what you're going thru isn't abnormal, .. that it's a thing for others and that it can be par for the course. Not that this type of suffering this far out is 'normal',.. but you know what I mean. Thanks for letting me know that. I think you're so right,.. while the nervous system injury is there, it's all encompassing. Mast cell, immune system stuff, etc etc. 

[[ne...]]

I relate at 8 months off. <3

[[le...]]

I am about 4 and half years off being forced to CT off zopiclone, I had a happy normal life on it. First 10 months weren’t too bad had intrusive thoughts but not much physical stuff. Then they stuck me on anti depressants and all hell broke loose, the intrusive thoughts have slowly got worse and worse. Probably came off them too quick as made me feel so awful,don’t have as many symptoms as you, and have had a lot emotional stress with my family that aggravated things. Shame they got rid of the protracted board, as sure there are plenty of other still this bad at 4 years plus, not just you😄

[[Fi...]]

I've been off just over 4 years. It was just benzos for me, but I'm still pretty messed up. I healed up slightly from the acute days, but I've never gotten above 25% of what I used to be. I deal with a lot of the same symptoms every day, and my CNS is so sensitive, food can set me off so badly that I won't sleep for days with intense symptoms. It's crummy stuff. I wish I had more to offer you, but at the very least, you're not alone in this. 

[[or...]]

I've seen a lot about food-sensitivity and just wondering as I am hoping never to have that since I eat a certain way as a T2 Diabetic.  Can someone tell me which foods a person becomes sensitive to?  Maybe I can avoid them ahead of time, I guess that's what I'm thinking.  Also, is it the digestive system that is out of wack that is what they call food sensitivity?  Thank you much for any feedback, Denise

[[dj...]]

26 minutes ago, [[o...] said:

I've seen a lot about food-sensitivity and just wondering as I am hoping never to have that since I eat a certain way as a T2 Diabetic.  Can someone tell me which foods a person becomes sensitive to?  Maybe I can avoid them ahead of time, I guess that's what I'm thinking.  Also, is it the digestive system that is out of wack that is what they call food sensitivity?  Thank you much for any feedback, Denise

My food sensitivities aren’t GI related. I’ve had bouts of serious constipation but that wasn’t caused by foods. 
 

Certain foods tend to rev up my symptoms more, the main ones being anxiety, insomnia, muscle tension/pain and weird nerve activity.  I don’t want to name those foods here so not to worry people about what they’re eating, but they are foods high in glutamate and sugar.  I will say avoid MSG if you can.  A lot of people mention that foods high in histamine give them problems but that hasn’t affected me as much.  

[[Wo...]]

I am in the same boat. Will be 4 years off everything on August 20. and am still in hell. It is a nightmare I cannot put into words. I am so sorry it's been taking so long for you, too. I, too, was polydrugged, had many ct's, rapid tapers and a horrible adverse reaction to the last drug. I guess that's why it takes so very long. 

[[Pa...]]

4 minutes ago, [[W...] said:

I am in the same boat. Will be 4 years off everything on August 20. and am still in hell. It is a nightmare I cannot put into words. I am so sorry it's been taking so long for you, too. I, too, was polydrugged, had many ct's, rapid tapers and a horrible adverse reaction to the last drug. I guess that's why it takes so very long. 

Hello @[Wo...], welcome to BenzoBuddies,

I'm so very sorry to hear you're still suffering, but you're not alone.  We have many protracted members, who struggle like you.  We're in the process of starting up a group specifically for members in your situation, its horrible how life altering these drugs are.

Pamster

[[Ma...]]

I’m in a similar boat going into year 4 after stopping multiple a/d’s and now 3rd time around with Clonazepam. I think my brain and body just broke. You’re definitely not alone. Feel free to DM me anytime as well.