Major Setback after 8 years healed

[[ih...]]

I was given benzos by mistake while in my teens (16 yo). I used them sparingly but had all sorts of symptoms from them. 
 

I discovered the drugs are harmful in 2016 after having a horrible 1 year withdrawal. But recovered completely. And led a full full life: business, marriage, kids, adventures wide and far. 

Now, since April, I am back in hell. Had alot of stress in my life. My Emotions became unsteady.
 

And then continous panic. Then I lost the ability to sleep. I got jerks whenever I fell asleep. 
 

Then gastro symptoms, head aches, strange dreams when slightly dozing off, muscle spams, jerks, restlenesness/agitation and the need to walk to relieve it.  
 

Cant read, watch a movie or concentrate on simple tasks. Showering or driving a car are now difficult because of focus issues. I was a pro at driving. 

I can't stay by myself, I can barely eat, I seem to have a significant craving for sweets, I have intense headaches and nausea, I lost alot of weight, I feel exhausted while also panicky/restless. 
 

I've read about setbacks but nothing so intense as I am going through. 
 

I need some encouragement and prayers. I never imagined this kind of continous hell. 
 

Are there other stories similar to mine? I read Matt Samet's setback but mine looks 10X worse. 
 

Woshing all you well and healing

[[Cr...]]

Hi @[ih...], Welcome to Benzo Buddies! It seems you are really having a tough time amd desperately need some support.

If I read your post correctly you stopped using benzos in 2016, fully recovered, then as of April of this year you are experiencing a lot of symptoms that were similar to your benzo withdrawal period?

We have a support group called 'The Long Haulers' for members that are suffering symptoms long after they stopped using benzos. You may find relief in getting support from others in your same situation. Of course you are still welcome to use the whole forum for your support needs.

A few other questions.

Are you on any other meds now or recently in the past?

Anything major happen recently in your life in regards to major changes, stress?

[[ih...]]

Hi,

You understand things perfectly although because of my intense symptoms I couldnt really post with patience and care. 

Thank you so much for the reply.

No meds. I was careful. I had alot of stuff on my plate this year: wife health issues, parents health issues, work stress but also adventure: I was due to start an Ivy League Program and travel across the world. But I faced similar things in the past with no issue. 
 

I had a perfect life all in all and now losing everything. 
 

I joined the long haulers, thanks.

If there are any stories of people suffering like this and recovering I would love to read them. 
 

 

[[Co...]]

25 minutes ago, [[i...] said:

I discovered the drugs are harmful in 2016 after having a horrible 1 year withdrawal. But recovered completely. And led a full full life: business, marriage, kids, adventures wide and far. 

Now, since April, I am back in hell. Had alot of stress in my life. My Emotions became unsteady.

And then continous panic. Then I lost the ability to sleep. I got jerks whenever I fell asleep. 

Then gastro symptoms, head aches, strange dreams when slightly dozing off, muscle spams, jerks, restlenesness/agitation and the need to walk to relieve it.  

Cant read, watch a movie or concentrate on simple tasks. Showering or driving a car are now difficult because of focus issues. I was a pro at driving. 

I can't stay by myself, I can barely eat, I seem to have a significant craving for sweets, I have intense headaches and nausea, I lost alot of weight, I feel exhausted while also panicky/restless. 

Hello @[ih...]. Welcome to BenzoBuddies.

Given that you have not taken benzodiazepines since 2016, and you fully recovered many years ago, and that you are now highly stressed, I think it unlikely this has anything to do with your past use of benzodiazepines. I cannot know for certain of course, but would it not make more sense to assume that you are experiencing symptoms of stress?

Except for anxiety during withdrawal (I did not even recognise what it was at the time), I have not experienced clinical stress, anxiety, or anything along those lines. So I am not the best person to comment further on this. But many of our members suffer or have suffered from anxiety - they might be able to better advise you than me.

You might also start a topic on the Insomnia, Depression & Anxiety forum.

[[ih...]]

Thank you for the message, Colin!
 

I solved all stressful events (all health issues for family resolved well etc) prior to the April onset of first continous panic and then complete insomnia. Then the other set of symptoms started to appear: the terrible fatigue, the mind stuck  (it is so difficult to type this and I have a window now), the extreme agitation with 10km of walking per day, the head aches and mental pain, the complete constipation, etc etc)
 

Symptoms are the same as my previous withdrawal. Just much more intense and of them bundled together. 
 

All of these came in waves and windows in that full year of horror. I was disabled then, but am completely disabled now.

 

[[Cr...]]

32 minutes ago, [[i...] said:

I had alot of stuff on my plate this year: wife health issues, parents health issues, work stress but also adventure: I was due to start an Ivy League Program and travel across the world. But I faced similar things in the past with no issue

 @[Co...] came to a similar thought as I did. That is why I asked you those questions.

If you got onto benzos to treat low stress tolerance and anxiety, those can remain lifelong issues well after benzo use and recovery unless you learn some good coping skills.

It is possible that your use and withdrawal caused some lasting physiolgical changes (theory) that make you more suceptible to stress than you were prior to benzo use.

If your current symptoms are not from protracted withdrawal, but just anxiety from stress due to all that has gone on in your life recently, that could actually be viewed as better news than feeling like benzo withdrawal will always be laying dormant waiting to surprise you.

No one can say definitively what the cause is, but perhaps after spending some time here you may be able to verify or rule things out. The fact that you went almost 6 to 7 years of feeling normal seems to be a point against this being from your past benzo use. I imagine you would have had many other 'waves' between then and now.

[[ih...]]

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

 @[Co...] came to a similar conclusion. That is why I asked you those questions.

If you got onto benzos to treat low stress tolerance and anxiety, they can remain lifelong issues well after benzos use and recovery unless you learn some good coping skills.

It is possible that your use and withdrawal caused some lasting physiolgical changes (theory)that make you more suceptible to stress than you were prior to benzo use.

If your current symptoms are not from withdrawal, but just anxiety from stress due to all that has gone on in your life recently, that could actually be viewed as better news than feeling like benzo withdrawal will always be laying dormant waiting to surprise you.

No one can say definitively what the cause is, but perhaps after spending some time here you may be able to verify or rule things out.

Thanks Crono. 
 

As to coping with stress, I've had lawsuits, bereavment, hard work etc repeteadly in my life post withdrawal and learned the coping skills to manage these: meditation, sports, support group of friends, healthy eating, healthy sleep etc

But something failed in April here. And this time, my brain kind of exploded. 

Now, it would be great to have Anxiety. I can deal with that. I have a horror fest of a constelation of symptoms. 

Are there any success stories coming from setbacks that you know? 

 

Thank you for taking your time to share insights and help. 

[[Cr...]]

21 minutes ago, [[i...] said:

Symptoms are the same as my previous withdrawal. Just much more intense and of them bundled together. 

Anxiety is very powerful. In my early and late teens I had strong anxiety episodes where for weeks or months at a time I faced symptoms like shaking, rapid heart rate, restlessness, no appetite, panic, burning sensations. This was before I even touched my first benzo.

I know how powerful anxiety can be and how strong the symptoms it manifests can get. Again, I am telling you this not to discount you. I believe you when you describe how horrible these symptoms feel. The only problem is if you attribute them solely to being a protracted withdrawal wave and that ends up not being the source, you may waste your time waiting for relief that won't come until you address your situation in other ways.

I will keep an open mind and hope you make good use of this forum. Make sure you keep an open mind as well for the sake of your own recovery 

 

[[bw...]]

Im very sorry. This is very atypical of a setback. Prof ashton writes about it in her studies. I posted it numerous times a photo from her manual. Its in my posts search for it.

I also had a severe setback at 5.2years off from pepcid. New symptoms 100x.

Akathesia included. Which your constant walking to relieve agitation is, akathesia.

Im very sorry. Many of us have these many years off. Normally induced by drugs and some cases stress. JENN LEIGH and matt samet to name a few. Its not uncommon. I hope its short lived in a few months. Im going 17months into my setback from taking pepcid. (Akathesia has stopped but have extreme rocking on boat and hugging walls symptoms). New ones are agoraphobia, monophobia like you.

Allergic to foods and smells. Almost really weird scary histamine type issues.  the brain just "snaps". There is no known reason or mechanism why it happens. It hasnt been studied as prof ashton mentioned as the funding grant of millions was shutdown by big pharma YEARS AGO.

 

Hang in there. You will get back to baseline. It may be real tough i totally sympathise with you. It will end. Eventually.

[[bw...]]

On 21/06/2024 at 04:46, [[C...] said:

 @[Co...] came to a similar thought as I did. That is why I asked you those questions.

If you got onto benzos to treat low stress tolerance and anxiety, those can remain lifelong issues well after benzo use and recovery unless you learn some good coping skills.

It is possible that your use and withdrawal caused some lasting physiolgical changes (theory) that make you more suceptible to stress than you were prior to benzo use.

If your current symptoms are not from protracted withdrawal, but just anxiety from stress due to all that has gone on in your life recently, that could actually be viewed as better news than feeling like benzo withdrawal will always be laying dormant waiting to surprise you.

No one can say definitively what the cause is, but perhaps after spending some time here you may be able to verify or rule things out. The fact that you went almost 6 to 7 years of feeling normal seems to be a point against this being from your past benzo use. I imagine you would have had many other 'waves' between then and now.

 hi cronos, I must respectfully and completley disagree with you. Prof ashton writes about setbacks in her studies. I do not doubt the poster in indeed he /she is suffering a setback from prior  benzo issues. In regards to normal stresses triggerring it. so yes, I wholeheardetly believe its indeed, benzo induced damage and nothing more. Setbacks, They are very very real and can happen MANY years off. Most likely induced from drugs and stress (jenn leigh and her driving accross state to visit her parents left her bedbound for what 12 months... and matt samet come to mind after rock climbing all day at 7years off to again, bed bound.).

 

 

Edited June 22 by [bw...]

[[bw...]]

6 minutes ago, [[b...] said:

 hi cronos, I must respectfully and completley disagree with you. Prof ashton writes about setbacks in her studies. I do not doubt the poster in indeed he /she is suffering a setback from prior  benzo issues. In regards to normal stresses triggerring it. so yes, I wholeheardetly believe its indeed, benzo induced damage and nothing more. Setbacks, They are very very real and can happen MANY years off. Most likely induced from drugs and stress (jenn leigh and her driving accross state to visit her parents left her bedbound for what 12 months... and matt samet come to mind after rock climbing all day at 7years off to again, bed bound.).

 

 

 

[[Pa...]]

I am going through a set back too. I am 4 1/2 years off now. The last week I went to the dentist and got novacaine. Since I have had heart rate issues, trembling, general feeling of being unwell, and revved up anxiety. I just want all this over now. 

[[bw...]]

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

I am going through a set back too. I am 4 1/2 years off now. The last week I went to the dentist and got novacaine. Since I have had heart rate issues, trembling, general feeling of being unwell, and revved up anxiety. I just want all this over now. 

Did you have it with or without adrenaline?

[[Cr...]]

18 hours ago, [[b...] said:

In my post you will see that I did not say that his experience wasn't benzo-use related. I said that past benzo use may have caused some changes that made his cns very susceptible to the effects of stress. 

That said, high stress can cause lots of horrible physical and mental symptoms even in people that have never taken benzos before. Anxiety, depression, restlessness, low appetite/energy/concentration, muscle tension, sweating, insomnia, etc. Those are common withdrawal symptoms but they are also symptoms that can be felt from stress-related anxiety for many that have never gone through benzo withdrawal.

I am aware that Ashton acknowledges there are cases where a person felt withdrawal-like symptoms return many years later. I know of people like Matt Samet.

What I am saying is that no one can say with 100% certainty this his case is definitely a setback or wave. Even if his current state is related to past benzo use/wd, I personally don't like the term 'setback' as I feel it is more suited to the results of taking anything (alcohol, certain gaba-agonist meds, occasional benzo use) that can undo some of the healing that occurred. I don't think stressful events have re-downregulated his gaba receptors.

My personal view is that it very well may be related to his wd from 8 years ago as he may have came out of that with a cns that is going to be extra sensitive to stress for a long time. But, there is no benefit to him in assuming the only possible explanation is that it is a wave or setback when he didn't have any symptoms or waves these past 7 years. 

I can't say it definitely is not a wave and no one else can say it definitely is. It would probably be best to assume it isn't as doing otherwise implies he has to be constantly on guard for waves for the rest of his life even without a stress trigger.

[[Lo...]]

It really annoys me when people say could this just be anxiety , there’s a huge difference in normal anxiety and drug injury induced anxiety , once you have felt what chemical terror and aka agitation feels like you know it’s the injury because it’s inhumane suffering that is not normally felt in the body not matter how stressed you are . So you know your body if it feels like withdrawal then your in a setback 

[[Co...]]

15 hours ago, [[L...] said:

It really annoys me when people say could this just be anxiety , there’s a huge difference in normal anxiety and drug injury induced anxiety , once you have felt what chemical terror and aka agitation feels like you know it’s the injury because it’s inhumane suffering that is not normally felt in the body not matter how stressed you are . So you know your body if it feels like withdrawal then your in a setback 

I think 'could' is the key word. Unless I missed it, no one spoke with certainty on this. The point is, there is an alternative explanation which carries certain implications - and possible solutions.

[[Tr...]]

I'm 5.25 years off myself, and after a nearly year long window (with mild symptoms, and a short wave earlier in the year) and many large windows before that, I am in the wave of waves now. I have been trying to figure out what could have caused this but I don't drink, use drugs, used penicillin in December of 2023 and this wave started to slowly ramp up in May of this year. I don't worry, ruminate, etc. I considered vitamin D, chlorine in pools, possible covid, arsenic in rice cakes I ate when trying to lose weight- and nothing adds up. I slowly tapered off Prilosec over months but I was only on 20 mg, then 10 mg, then 5 mg and fine the whole way down. I had toenail removal surgery with Phenol as the acid to burn the root, and I lose 15 lbs on a diet about this time.

 

I started to turn a corner in 2022 at 3 years off and after a short but intense wave towards the end of August in 2022 I felt mostly healed by 2023.  My long windows allowed me to work out, give speeches, play with my kids, enjoy hobbies, and socialize. The symptoms were so quiet for so long I was getting ready to write a success story. My current symptoms are like my 2022 wave but much more gradual onset and longer: chemical anxiousness, nerve pressure, buzzing, scary hyperacusis, burning and more burning, buzzing, and sizzling in my ears and head. The pressure and anxiousness is well beyond what I've experienced in years since my slow taper ending in 2019. I'm still working full-time as a psychotherapist in a group practice and clinical supervisor which requires a high level of functioning, and raising 3 children under 6, and now I'm scared it's all going to crash down around me. Your post makes me feel not alone, but also very sad for you and others like us who are suffering when we thought we were healing. Reading about Dr. Leigh and Matt Samet's setbacks/waves long into their recovery shows me that this is part of the winding road and it ends in a good place. 

Edited July 25 by [Tr...]

[[Tr...]]

bwittters, I considered Prilosec as the reason for this setback, but I tapered from 20 mg to 10 mg to 5 mg over a few months during my window and was fine the way down until I ended in June (mild symptoms end of May so it could correlate) but my wave is peaking now. I can't find anything about the PPIs causing neuro symptoms but your story makes sense. Have others suffered from these kinds of setbacks from PPIs? Did your setback happen gradually or suddenly? How are you now? 

 

* Just realized you were taking percid, not a PPI. I believe Pepcid does mess with Histamine receptors. 

Edited July 25 by [Tr...]

[[Tr...]]

On 22/06/2024 at 01:39, [[b...] said:

Im very sorry. This is very atypical of a setback. Prof ashton writes about it in her studies. I posted it numerous times a photo from her manual. Its in my posts search for it.

I also had a severe setback at 5.2years off from pepcid. New symptoms 100x.

Akathesia included. Which your constant walking to relieve agitation is, akathesia.

Im very sorry. Many of us have these many years off. Normally induced by drugs and some cases stress. JENN LEIGH and matt samet to name a few. Its not uncommon. I hope its short lived in a few months. Im going 17months into my setback from taking pepcid. (Akathesia has stopped but have extreme rocking on boat and hugging walls symptoms). New ones are agoraphobia, monophobia like you.

Allergic to foods and smells. Almost really weird scary histamine type issues.  the brain just "snaps". There is no known reason or mechanism why it happens. It hasnt been studied as prof ashton mentioned as the funding grant of millions was shutdown by big pharma YEARS AGO.

Hang in there. You will get back to baseline. It may be real tough i totally sympathise with you. It will end. Eventually.

Sorry, my post above was to you bhwitters. I'm figuring out this new format of quoting. 

[[bw...]]

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

Sorry, my post above was to you bhwitters. I'm figuring out this new format of quoting. 

Hi yes i have heard many have had setbacks with PPIs. and in my case pepcid.

my setback was a slow build, and then all of a sudden my brain snapped. cooking dinner and had a massive uncontroabble panic attack. what followed was ACUTE akathesia, fear, terror. the whole 9 yards.
the aka was with me for 10 months. 40K steps per day, hitting myself to make it stop. truley hell. and that was 5.5years off benzos
its been 17 months since the setback and unfortuatley im still quite ill. im better but im nowhere near as to where I was pre setback

i really think its better not to take anything.

is gerd / reflux a common thing for you? ive had it daily since my setback. My throat is terribly scarred and have choking attacks from it. All i can take is slippery elm powder as I react to everything else.

 

 

[[An...]]

Hi, I can attest that setbacks happen just like this. I was also 8 years healed and am in a horrific setback due to chronic stress and experimentation with microdosing “plant medicine.” All of my sxs from original w/d plus new ones. I’ve become incapacitated since early June and never even knew that this was a possibility. I’m now 10 weeks out and suffering horribly from this setback. Aka, panic, adrenaline, insomnia, burning skin, awful. Also, if you want to connect @[ih...]please let me know. 

[[...]]

Hi, @[An...]. Welcome to BenzoBuddies!) Feel free to start a thread of your own if you have any benzo related issues to discuss or need support. Good luck to you. Hope you'll soon get better!

 

[[PE...]]

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

Hi, I can attest that setbacks happen just like this. I was also 8 years healed and am in a horrific setback due to chronic stress and experimentation with microdosing “plant medicine.” All of my sxs from original w/d plus new ones. I’ve become incapacitated since early June and never even knew that this was a possibility. I’m now 10 weeks out and suffering horribly from this setback. Aka, panic, adrenaline, insomnia, burning skin, awful. Also, if you want to connect @[ih...]please let me know. 

High!

What "plant medicine " was that?

[[An...]]

Psilocybin 

[[Rh...]]

Although I am nowhere near off as long as many of you, I too have had a massive setback from a migraine medication I took.  I’m only 1 year and 1 month off but I was pretty much doing well until I took this migraine med and then all hell broke loose.  I am back in an acute wave all this month and was looking up “setbacks” when I ran across this post.

I might have no right to comment or be here, but I just wanted to say I can relate to being thrown back into acute when we felt much better before.

As others have mentioned there are many people that have suffered major setbacks long after being off but even they healed and you will once again too.