Is this possible?

[[le...]]

Hope you soon feel better. Take it easy just rest xxx

[[Li...]]

Dee,

I'm so sorry to hear that. Hopefully when the drug gets out of your system you'll start to feel better. You take care! Big hugs to you.

 

LiveLife

[[Ju...]]

Is anyone else under the impression that there's nothing whatsoever we can put in our body without side effects and throwing ourselves into waves? Yesterday I had some Heinz ketchup, and that was enough to throw me into a wave temporarily for a few hours. Even if I have too many vitamins or eat too much of the same food, I start getting symptoms.

 

I have literally gone completely 100% organic from the farm and nothing else, both meats and produce and vegetables and fruits, literally everything. Even my spices are completely 100% organic. If I mess up a day and accidentally get high fructose corn syrup or some kind of sugar or any kind of preservative, I instantly know it because of bad side effects.

[[le...]]

Food doesn’t affect me. I don’t drink cows milk because affects my IBS. Also avoid coffee because sleep issues. I find any supplement J’ve tried revs me up. But normal day to day food fortunately doesn’t seem make any difference.

[[Pa...]]

Nova Scotia:

 

Can I ask what you mean by "post withdraw phenomenon"?  Do you mean you are still having symptoms?  If so, can you explain those?

 

Also, if you have gone on to live a full life, why are you "creeping" on this forum inserting yourself in a dialog out of nowhere.  I am on this forum a lot and have not seen you post on here in the last two years.  It seems a little predatory. 

 

I understand this forum is for all sufferers of this experience, but your interjection does not seem appropriate. 

 

Can you explain how you think relating your experience is helpful to someone who might be in the first or second year of post benzo discontinuation.

 

I am not in any leadership position on this forum, but I am going to ask them to look at your posts and weigh in on whether they think it is appropriate!

 

decatur,

 

I for one am grateful when long time members choose to visit the forum, this is our greatest strength, members who share their experience for the benefit of others.  The fact that our forum has been around so many years is a testament to members just like NovaScotia, members who know that those currently going through this long to hear from those who have.  We may not want to hear what they have to say but its their story and they're welcome to share it.  Its our job to realize that just like every other post we read on the forum, this may or may not be our experience but that doesn't mean they can't share theirs. 

 

Pamster

[[No...]]

Pamster ...

 

Thank you.

[[Ka...]]

Nova Scotia, thank you for coming back to share your experience with us. We appreciate you. I'm at 4 years and 3 months off and still suffering terribly. Just wondering what kind of sx do you still have left at this point? Since you mentioned being able to lead a fruitful, functional life I hope they are minor? but I also now unfortunately know how this process can be so long and rough. Please tell us a little more about your experience. We also have a group on FB of around 4-5 years off but most of us are this protracted because we had severe setbacks. How are you doing with meds and sensitivities these days? What are the sx you still have left?

[[al...]]

Is anyone else under the impression that there's nothing whatsoever we can put in our body without side effects and throwing ourselves into waves? Yesterday I had some Heinz ketchup, and that was enough to throw me into a wave temporarily for a few hours. Even if I have too many vitamins or eat too much of the same food, I start getting symptoms.

 

I have literally gone completely 100% organic from the farm and nothing else, both meats and produce and vegetables and fruits, literally everything. Even my spices are completely 100% organic. If I mess up a day and accidentally get high fructose corn syrup or some kind of sugar or any kind of preservative, I instantly know it because of bad side effects.

 

It's always something. Food, stress, supplements, you name it. It feels like walking on a mine field. There is no way to predict what will trigger symptoms and how long they will last. I have stopped trying to be super careful lately because it doesn't seem to really pay off in my experience. I'm at a point where the symptoms are delayed by 48 hours after the event/trigger rather than right away. I'm good for the following day after I do something wrong, but the next day I start to pay for it.

[[al...]]

Apologies for the double post, but I just need to vent/complain to folks who would understand. I woke up basically in acute this morning. Had horrible nightmares last night, woke up to awful GI issues and the skin burning all over my body where just wearing clothes hurts, and it looks like I'm going to be bedridden for the rest of the day today. I'm so tired of this torture that feels like it never ends. Hope you're all doing better than I am.

[[le...]]

Vent away. So sorry you are still going through this. 3 years plus is really too long for us all to be still suffering.  But you aren’t alone. Just shows there is a real need for a 3 year plus forum!

[[Mi...]]

Deadwood,

I hope you get to feeling better soon.

 

Wow. This topic got really interesting. .. & helpful.

 

All of us going through WD during this time frame are also experiencing it during one of the most stressful times in history, during a pandemic. Please be extra gentle with yourselves.

 

JustinTime, 

I need to keep that in mind that even the stress of a fight can bring on the symptoms. Bickering with my spouse does not do me, nor him any good.

 

It took Dr Jennifer Leigh of "Benzodiazepine Help" 8 years to say she was healed. Her story is for all the public to see in her blog. She will tell you that people don't like to hear about her story because of the time it took, but she will also tell you that she was not in agony 24/7. There were many times she thought she was mostly healed, and she still led a happy life through it all.

 

At 6 years she felt good enough to drive across the country. She stayed at her parents for two months, slept in her car some. Well, she over did it, and at 6 years she had a big wave. She calls it a setback. It started in July. It was rough. Had her bedbound for some of it and using a walker, but she slowly started to improve by fall. By Christmas she was able to visit with family. By January she was onto more normal life. It took her a year or so for her residual symptoms to break up and fade away after that.

 

Now she's traveling. Flying to visit family & attended her son's wedding. Running her benzo support group. Writing books. She's even had dental work and taken 2 courses of antibiotics with no issues at all. She had Covid in January 2022 and that did not bring back her withdrawal symptoms either.

 

She says she's a "turtle" - a slow healer. She said to me about 2 months ago "I don't know why it was for me to take so long to heal." I told her because she gives the folks who take longer hope.

 

She was NOT acutely ill for 8 years, but when you tell someone who is in the thick of it, that it took 8 years,  they can get really upset by that.

 

I like that someone like Nova Scotia can come on here & say that even though they don't say they are fully healed yet, they are highly functional and living full lives. Of course we all want, and most likely will heal sooner, but if it takes longer, than you know you're not alone.

 

I just had about a two week symptom flare from going golfing twice in one week. Outside of my daily nature walks I had not done something that strenuous since I had to move back during my 18th month of withdrawal, & like JustinTime, moving put me in a wave back then. Well now the golfing I did was too much too soon as well. My body let me know it.

 

That was 3 weeks ago. I'm starting to get better from that now. It was like an 11 day wave. Not bad all the time. Feeling healed mixed in with rough parts of the day. I seem to be through the worst of it. - Hopefully.

 

My life is like JustinTime's.  I walk in nature, and remain pretty chill otherwise. Shopping at a store here & there. A festival here and there. Visit outside with the neighbors here and there. It's not a bad life. Of course it's still easier to accept on my good days, when I don't feel a bit - "doomy" which still happens for a few hours here and there a few days a month.

 

We will get there. Be good to yourselves.

 

 

[[al...]]

Deadwood,

 

I hope you get to feeling better soon.

 

Wow. This topic got really interesting & helpful.

 

It took Dr Jennifer Leigh of Benzodiazepine Help 8 years to say she was healed. Her story is for all the public to see in her blog. She will tell you that people don't like to hear about her story because of the time it took, but she will also tell you that she was not in agony 24/7. There were many times she thought she was mostly healed.

 

At 6 years she felt good enough to drive across the country. She stayed at her parents for two months, slept in her car some. Well, she over did it, and at 6 years she had a big wave. She calls it a setback. It started in July. It was rough. Had her bedbound for some of it and using a walker, but she slowly started to improve by fall. By Christmas she was able to visit with family. By January she was onto more normal life. It took her a year or so to get to where she is now.

 

Now she's traveling. Flying to visit family & attended her sons wedding. Running her benzo support group. Writing books. She's even had dental work and taken 2 courses of antibiotics with no issues at all. She had Covid in January 2022 and that did not bring back her withdrawal symptoms either.

 

She says she's a "turtle" - a slow healer. She said to me about 2 months ago "I don't know why it was for me to heal so slow." I told her because she gives the folks who take longer hope.

 

She was not acutely ill for 8 years, but when you tell someone who is in the thick of it, that it took 8 years,  they can get really upset by that.

 

I like that someone like Nova Scotia can come on here & say that even though they don't say they are fully healed yet, they are highly functional and living full lives. Of course we all want, and most likely will heal sooner, but if it takes longer than you know you're not alone.

 

I just had a two week symptom flare from going golfing twice in one week. Outside of my daily nature walks I had not done something that strenuous since I had to move back during my 18th month of withdrawal, & like JustinTime, it put me in a wave. The golfing I did was too much too soon as well. My body let me know it.

 

That was 3 weeks ago. I'm starting to get better from that now. It was like an 11 day wave. I seem to be through it. - Hopefully.

 

My life if like Justin Times.  I walk and remain pretty chill otherwise. A store here & there. A festival here and there. Visit outside with the neighbors here and there. It's not a bad life. Of course its still easier to accept on my good days, when I don't feel a bit - "doomy" which still happens for a few hours here and there a few days a month.

 

Really appreciate this post, thank you. It's so important to have hope during this process, which this gave me.

[[No...]]

KathyM ...

 

Thank you for your kind words. They are encouraging.

 

The post from “decatur “ had me doubting the purpose of my continuing to engage with folks on this board. However, my desire to support folks going through this benzo process by telling my story, as I have experienced it and understand it, is firm.

 

You ask what I continue to experience ... a feeling of unease when I am in environments with lots of noise, crowds, the sense that things are happening too fast, where I feel on the verge of being overwhelmed ... boatiness, sometimes intensely, most often merely a background sensation ... the sensation of “vibration” where I believe I experience energy flowing through my body, often disconcerting ... a sometimes sense of being “disconnected” with where I am, I suppose this is the remnants of DP/DR ... visual “fuzziness” where it can be challenging to focus my vision.

 

All of these sensations can still be surprisingly intense ... however, they are always temporary and I am always safe while I experience any of them. When things get disruptively intense I have a practice that I employ until the intensity diminishes. This practice does not “fix” anything. Rather it is an aid to getting through my day when I need it.

 

Back in the day when I was in acute ... acute: being the ball in a pinball machine with a paddle that seemingly never stopped hitting me ... or ... acute: being on the roller-coaster from hell ...

 

At some point I began to sense that I was no longer completely in the control of a process that was totally incomprehensible to me ... one evening I actually found myself sitting still, actually mostly quiet ... that was a surprise ... usually I would be moving almost constantly through the apartment seemingly trying to escape whatever was going on in the moment ...

 

The next bit was what I call a blessing ... I started remembering a meditation practice that I had learned long ago ... sometimes called the “raisin” ... where one slowly engages all their senses, one at a time, in the process of eating a raisin ...

 

The long and the short here is the use of a practice I call “going slow” or “changing the channel” ...

 

The practice I developed for myself was making and drinking a cup of tea ... seems I am not particularly fond of raisins ...

 

The object of the practice is to shift my attention from whatever symptom parade was going on in my body to something else ... hence “change the channel” ...

 

And, to perform something else with exaggerated slowness and complete attention engaging each of my senses in turn ... sight, hearing, smell, taste, etc ... hence “going slow” ...

 

I have written of this elsewhere on this board ... in short, I would make and drink a cup of tea all the while with my attention focused on the practice and not the ongoing symptom parade ...

 

In time, with many false starts, I continue to employ this practice when I am experiencing an intense symptom episode ... and the ultimate blessing is that I gradually was able to return to all of the things that are important in my life ... 

 

I do not bother with trying to reason out any “chicken and egg” paradox ... I truly don’t care why it seems to be helpful ... it does not matter to me if this practice is some sort of “great fiction” ... for me it had and continues to have significant efficacy ... so be it ...

 

Enough for now, this got a bit long-winded ...

 

Be Well

[[Ju...]]

The burning skin sucks. I've had some issue where my face will start burning and starts to get what looks like face dandruff around my mouth and my chin. It feels like I put acid on it or something, and it starts burning really bad. It's actually so sensitive that I had to stop using soap on my face, now I just put lots of water on it and cleanse it with my fingers. I still use soap on the rest of my body, just not on my face at the moment.

 

And the soreness and pain in the muscles also sucks. I can't even lay on my side in bed, I have to lay on my stomach. Even when I'm reading, I can't lay on my back long. And if I'm sitting in a chair, the backs of my legs start to burn and my legs get numb after a while. Basically if I don't get up and walk around, then I'm going to be in pain guaranteed.

 

I understand the multi-day delays as well. Sometimes if I talk to my friend for seven or eight hours on the phone, it will throw me off for the next couple days. That's kind of ridiculous to talk to somebody that long in the first place, but it happens. If I don't eat good food on a normal schedule and go for walks and get out my benzo anxiety, then I pay for it big time later.

 

I'm pretty sure that's why exercise makes us feel so good, because we have excess anxiety from benzo withdrawal. If we don't get it all out, then it builds up. Or if we eat something that's not healthy or natural, our body gets ramped up trying to get rid of it. Basically it's like putting poison into our body if it's not legit food.

 

That would be really cool if they figured out the answer to all of this stuff one day, all I can do is just make assumptions about what our bodies are telling us. But check this out, I had a really weird idea that came to my head the other day:

 

You know how when babies are born, they have all of the necessary nutrients from their mothers? They say that we are born pure and natural as they call it, because we haven't done any drugs or eaten anything bad yet? What if somehow our brains got damaged from benzos, and the only way we can heal 100% is by having 100% natural stuff going into our bodies? Or if for some reason we don't have 100% natural stuff on a daily basis, perhaps that just prolongs it?

 

Like what if whenever we removed the benzos from our brains, our brains are going back to rebuilding themselves from scratch, kind of like when we were born? I would say that's another possibility, kind of like our brains rebuilt themselves around the benzos when we were taking them, and now it is rebuilding them back to 100% natural and biological again. Who knows right?

[[Ka...]]

Thank you very much Nova Scotia, it is very very helpful, I really like the practice that you've been using, ive also developed something similar with meditation techniques to ease anxiety and to allow myself to slow down, akathisia can still get pretty bad, but that helps a little. Wishing you continued and complete recovery!

[[Hi...]]

For what it's worth, and I know we are all different.

 

I got covid twice in less than 6 months.  Had both vaccines and a booster but I refuse to get any more.  I recovered from both bouts and did not have much more elevated symptoms except feeling like garbage.

 

Hang in there everyone. 

 

Hingie

[[Mi...]]

Hingie,

Thank you for sharing. Glad you got through the Covid.

 

It does not help that we are all dealing with a pandemic in the world simultaneously with withdrawal. Stress is hard on our central nervous systems. A pandemic is stress. Having that constanty going on in the background is almost half of my stress issues.

 

Justintime,

I've actually thought about that myself... The rebuilding our brains from birth theory you talked about. Maybe we are rebuilding our "safety centers" in our brains that the drug injured, like a new born baby learns to feel safe over time & builds those neuropathways. It makes sense.

 

To Everyone,

I've been having issues with doing too much lately. I feel better for a few weeks and when I increase activity/socializing it can bite me in the a**. The thing is that I have no issues in the moment while I'm doing it, which I am grateful for because last summer I could only dream about the stuff I've been able to do this summer, but about a day later I can get hit with a symptom flare from it. Then I end up in the recliner chair again for most of the day for a few days, and sometimes it can take a few weeks to recuperate and restore myself depending on what extreme I've over done it. This has been going on the last 4 months or so.

 

It is actually surprising to me at 3 years & 3 months how much rest I still require. Most days I have to have about 2 to 3 hours of down time during the day, plus a couple of hours in the evening before bed. This is in addition to really taking it easy with everything. If I go for a walk, it's a gentle walk. If I work on the computer I can't push it. If we take a ride I try not to be riding around for hours. Some days I feel good enough to do more. Other days I can't.

 

Some days I still need my husband to limit conversation or go into his "man cave" at times because I really need the peace, quite & calm to feel better, & if we have a fight the consequences of the stress from it can last for days.

 

If I don't "take it easy" I can have dizziness/boatiness, or migraine, or benzo flu, or insomnia return. Sometimes it can get a bit more rough and balance issues, to where I need a cane, or derealizaton and that "hopelessness" symptom can also return.

 

THE GREAT NEWS IS that for the first time, I am able to do more physically and socially, and I've reached some milestones in the last 6 months or so. This builds some confidence and can help some with the "what if" fear, but I'm still fragile.

 

I try to plan everyday on the "spoons in the drawer" or "penny in the jar" method. Meaning if I start off with 12 pennies for the day, I take away a penny for each activity ie: showering is one penny, cleaning the house is one penny, doing some part time work- one penny, socializing with a friend/family one penny, you get the idea. The point is to not leave yourself with zero pennies in the jar at the end of the day. Zero pennies means you've done depleted all of your energy. You don't want to do that because it can bring on symptoms or fatigue.

 

Wonder how many months, or years even, that this fragile state will go on for?? How many months/years will I be concerned with saving my pennies?

 

I like this thread. It's hard to get support on this forum once you've reached a certain time frame. Moderators don't really reply to what I post much. They're busy with tapers and acutely ill folks so I get it, but the "in betweeners" get kind of pushed off to the side until they heal and leave. It's still nice to have some support for this leg of the journey because it seems it can sometimes go on for awhile.

 

Hoping you all have a good day/days. Keep moving forward.

 

-Fortitude

[[al...]]

Super interesting about the brain rebuilding itself theory! I never thought of it that way. I always felt like all of these symptoms are an imprint left in our brain/nervous system of being acclimated to having these meds in our system, and it just takes a ridiculously long time for that imprint to leave and for our brain/nervous system to function as if it was never there to begin with. I never, ever thought I would be in recovery longer than I was on the actual meds themselves. It's just unreal to me how long this takes and how severe the symptoms can be this far out. I'm better than I was last time this thread was bumped, but full recovery still feels pretty far away at the moment. I'm right there with you all though that overdoing anything including socializing or any kind of stress really sets things off for me. For some reason even laying down lately makes my symptoms worse.

[[le...]]

I totally agree there is nowhere here for inbetweeners like us. Tried to get them to set up a section for those of us 3-5 years off who feel they aren’t suitable fir protracted board. But predictably they refused. I did have a couple of fairly OK ish days, but had problems with my e mails that caused lot of stress that pushed me right back to high anxiety again. Think maybe tried push myself too much, went for trip out in car Sunday, then again today, maybe too much too soon. Just get so frustrated any improvement is always so fleeting. Fear that any sort stress will push me back into the abyss again. I feel so tired every day, any sort exercise wears me out. They are predicting another heatwave here, humidity really high again, which makes everything so much worse.

Just get so frustrated any sort partial improvement only seems to last about day, then that black cloud starts hovering again.Certain amount of stress in life is unavoidable so does that mean I will be permanently be living in fear of it pushing any sort of improvement out the window when it occurs? The one thing I don’t worry about is Covid. With no restrictions thanks to our stupid Prime Minister, it isn’t going to go away, had it in April wasn’t very ill, did temporarily ramp up symptoms but not for long . I feel for those with underlying health conditions though, must be constant worry fir them.

 

 

must be constant worry for them.

[[Ju...]]

I have actually considered the imprint Theory as well. It's weird that our brains tell us the same stuff, even though we don't even know each other and had never discussed it before. My thoughts on the imprint Theory was a little bit different than yours though, mine was under the impression that maybe we still have little particles of benzodiazepines in our brain, and they are getting flushed out little by little. It's possible right?

 

I was watching a human anatomy video that talks about what the brain does when it's sleeping, it physically flushes things out almost like it is squeezing or mopping the brain. Like if there's all kinds of chemicals or preservatives in there, the brain automatically cleans itself and flushes itself out. Perhaps it cleans on a schedule, and only eliminates things whenever it feels like doing so, maybe it's that smart. What I mean by that is let's say that you are two years into your withdrawal, and then you do something to set yourself back a year, maybe your brain decides to hold on to the benzos for another year and then flush them out when you get back to your 99% state.

 

I know that might sound a little complicated, but here's my reasoning behind it. I was probably at about 90% if I had to guess a year and a half ago, but I had a major setback and had to start over almost. Maybe my brain had already eliminated the majority of the benzo particles, and when I had my setback, it decided to somewhat save them again until I'm at 90% again. Maybe the brain thinks it needs to hang on to things a little longer, who knows. The only other way they could be eliminated if the brain isn't ready to get rid of them, would be surgery or something.

 

Although if this imprint Theory isn't accurate, I like to think of it as the brain rebuilding itself. Maybe the benzos replaced something in our brain for so long, that whenever we did eliminate the benzos finally, the brain had to rebuild that spot again. Think about it like the big seed in a peach or a plum, imagine if the benzos somehow got rid of that, and then whenever we decided to get rid of the benzos, the big seed had to regrow itself from scratch inside of the plum or the peach. Would it rebuild itself the same way the second time, or would it rebuild itself better or worse? Well that could be what our brain is going through right now, maybe it will come out better than ever.

 

Or maybe it's not a physical piece of our brain at all, maybe it's just nerve signals rebuilding themselves. Like what if the benzos completely eliminated some of the signals that caused our feelings, and maybe that's why we didn't have as much anxiety when we were taking the pills. And now all of a sudden that part of the brain has been growing back, and that's what's been causing all of the pain and delusions and anxiety and Terror and paranoia and everything else, maybe that's what was causing the ringing. What if it's just all a big nerve growing back, and that's what we've been experiencing? Does that mean all of this crazy symptom related stuff has been a nerve growing, and it's almost done growing and then it's over?

 

Or maybe it's like I was saying about the birth thing, maybe it's like our brain is going back to square a or going back to our birth given natural state. Maybe it's not nerve related or physical piece at all, maybe it is just a state that humans don't even understand yet. Maybe there is a biological state within our brain or nervous system, that doctors and scientists don't even know how to measure yet or image.

 

I guess when we have 3 years to sit around and question what's going on in our bodies, we can come up with all kinds of theories.