Healed, a setback, another setback and just learning to move forward ❤️

[[Buddie]]

I agree 100% about the whole foods, we have similar stories and time frames. I am at 37 months, and getting back to my last "best yet" drom 18 months, because of a huge year and a half long setback myself.

I was almost healed at 18 months, then got thrown back into acute for about 19 months, and it was the most discouraging thing yet. All because I wanted to feel better faster.

Now the only thing that matters to me is stayimg off anything and everything, other than dentist numbing stuff (had no issues so far after a few fillings). The diet and being substance free is the only tried and true method on here so far.

We will be at 100% before long, hang in there.

[[Buddie]]

[...] den,
This is going to be a short reply, I try to avoid BB for my own mental health,,,,,,,but I wanted you to know that you are going to heal, you will recover and lead a normal life again. I also was only on a z drug,  complete healthy until my encounter with zolpidem. The good news is you are on the road to recovery. Although, I never suffered with the vestibule issues,  I do know that “turtlegirl” was also on a z drug, and suffered from those same issues you described, she recovered and is able to drive again. You may want to read some of her old posts, I think she healed around 2.5-3 years. Please believe me you will be ok, time will heal you. I know it.

Always, [...]

[...] thank you so much for replying to me! I’m crying reading this. THANK YOU! I’m going to go read turtlegirl posts. This is a blessing!
 

[[Buddie]]

I agree 100% about the whole foods, we have similar stories and time frames. I am at 37 months, and getting back to my last "best yet" drom 18 months, because of a huge year and a half long setback myself.

I was almost healed at 18 months, then got thrown back into acute for about 19 months, and it was the most discouraging thing yet. All because I wanted to feel better faster.

Now the only thing that matters to me is stayimg off anything and everything, other than dentist numbing stuff (had no issues so far after a few fillings). The diet and being substance free is the only tried and true method on here so far.

We will be at 100% before long, hang in there.

Just,

I am so sorry to hear that you've experienced such a horrendous setback as well! Thank you for normalizing that setbacks can last longer then a couple of months (as scary as that may sound to some). I'm a few weeks out from my 1 year post setback mark and its just absolutely crazy to me that i'm still symptomatic (although mild) when I spent almost 6 months symptom free before all of this.  But this is WD for some of us sadly.

Can I ask what caused your setback?

I'm so happy to hear you are FINALLY starting to feel back to your previous best again.

I also couldn't agree with you more. The only tried and true method that's really been proven through all of this is keeping a healthy diet and staying off of meds.

[[Buddie]]

Yeah, I think discouraging is putting it lightly. It's weird because I didn't even know that I had gotten thrown back into the acute withdrawal stage until several months later, when it all started to register in my brain. It's like I got thrown back into survival mode and didn't really even think of why until months and months later, and then I realized what happened.

It was cannabinoids that threw me back. It was Delta 8 and thco and thcp and CBD isolate and CBN and CBG and a few other cannabinoids, I was trying different combinations and playing around with whichever ones made me feel the best. They definitely helped me out with my remaining benzo withdrawal symptoms, only it didn't last long. As soon as I quit the cannabinoids temporarily to take a tolerance break, all hell broke loose.

Basically the story went something like this, I was 18 months into my withdrawal and almost healed, my sleep was completely normal, I was functioning like a normal member of society, but I just had a few inconvenient symptoms left. I decided to try the cannabinoids to get rid of the remaining symptoms, and it worked. Little did I know whenever the tolerance built up and I took my tolerance break from the cannabinoids, I would get thrown back into acute hell for another 19 months.

So it's like instead of going through benzo withdrawal once, I went through it twice. Now the goal is to actually heal for once, for the first time ever. I know what you mean by discouraging, you've been through it as well. But I think we could both agree that it's more like the worst thing that could happen.

[[Buddie]]

Its my time,

I am so so happy for you!
To know you're back to life & you're in nursing school. Great news!

I try to stay off the boards more because it can be triggering, & potential med setbacks is probably one of the more stressful subjects because how can one get on with life if they're worried about their future with meds or procedures they may need?  BUT SURPRISINGLY, I found comfort in reading this because although you had a very rough time with your sensitivities, you still made it through and are on with your life. That gives me hope. It's what I needed to hear, that you are living life fully in spite of having to deal with med setbacks.

I myself had a 4 month setback after the flu shot, but I was only at 18 months when it happened.

The setback itself is not the crappiest part. The crappy part is because of that setback from the flu shot, I can get pretty worried about my future. Depending on how I feel that day, the fear from the worry can darn near break me sometimes, & it's totally from "what ifs" , not even something that is going on right now. It's catastrophizing about the future. It can rob me of my good days if I let it, & on some days I have to work hard not to let it. I'm at 3.5 years now, and I am doing better with this concern as time passes, and as I heal more, and try to regain my life. Everyone I talk to about this, coaches and those who have had sensitivities at one point, all gain confidence over time and it is no longer in the forefront  of their minds. They still know to be cautious if & when the time comes to need these things, but it no longer haunts their daily lives and they forget about it. That's the phase I am in now. Working on regaining my life without being plagued by these concerns.

It's my time & [...]:
In many ways I actually feel relief from reading what you both had to say here. You've both done your research on here with those who stay sensitive for a long time. Even though the antibiotics/vaccines/dental procedures etc did bring on very bad WD symptoms for people, even acute like symptoms, they eventually went away. It wasn't an entire set back YEAR(S) with an "S" again. It was more like a long really crappy "bump" in the big picture.

[...]'s, I guess one could expect possibly an issue with 21 days of antibiotics. That's a long time on antibiotics. I think I remember talking with you about it on here before when it happened to you, and like everyone has said on here, it was rough but you got through. I went back & read some of your posts and you've had quite the journey with frequent UTIs, pneumonia, and needing several antibiotics over the years, and needing a steroid? (for BOOP a lung issue )  I'm not sure you took the steroid, but I'm so sorry you've had to go through all of this. I'm glad to hear that you last dental procedure went well, and that you and your dentist were able to come up with a plan that worked for you. I sincerely thank you for coming here to reply. Your detailed responses here are helping me tremendously.

Anyway, even though there's a lot of setback scenarios, some even pretty far out, everyone got through it. 

[...].. not only got through it, you are in college! How inspiring!
Your story gives me some major relief in all of this.

[...] & Its my time , thank you both for your help here for those of us who are sensitive.

Thanks 
Fortitude

[[Buddie]]

Thanks for your story.

Oh yes! The setbacks. I had one at 5 years out because I decided to take a few Benadryl: I was in college for my RN, and couldn't sleep.
Big mistake! It flared me up, yet lasted only a month. Isn't that weird?
I've had no problem with dental work though.

I absolutely avoid Benadryl. What a devil it was on my CNS. In fact, the pharmacist told me it can set ppl back, and can have adverse side effects.

Stay away from Benadryl.

It's safe to assume, to keep stress down as much as possible; it's stress that boils under cortisol.

I'm 10 years out, and I do pretty good.

Anyway, thanks. I hope you pass those nursing clinicals. I know the nursing world very well, and it's stressful...so go easy on yourself.

💗

[[Buddie]]

Its my time,

I am so so happy for you!
To know you're back to life & you're in nursing school. Great news!

I try to stay off the boards more because it can be triggering, & potential med setbacks is probably one of the more stressful subjects because how can one get on with life if they're worried about their future with meds or procedures they may need?  BUT SURPRISINGLY, I found comfort in reading this because although you had a very rough time with your sensitivities, you still made it through and are on with your life. That gives me hope. It's what I needed to hear, that you are living life fully in spite of having to deal with med setbacks.

I myself had a 4 month setback after the flu shot, but I was only at 18 months when it happened.

The setback itself is not the crappiest part. The crappy part is because of that setback from the flu shot, I can get pretty worried about my future. Depending on how I feel that day, the fear from the worry can darn near break me sometimes, & it's totally from "what ifs" , not even something that is going on right now. It's catastrophizing about the future. It can rob me of my good days if I let it, & on some days I have to work hard not to let it. I'm at 3.5 years now, and I am doing better with this concern as time passes, and as I heal more, and try to regain my life. Everyone I talk to about this, coaches and those who have had sensitivities at one point, all gain confidence over time and it is no longer in the forefront  of their minds. They still know to be cautious if & when the time comes to need these things, but it no longer haunts their daily lives and they forget about it. That's the phase I am in now. Working on regaining my life without being plagued by these concerns.

It's my time & [...]:
In many ways I actually feel relief from reading what you both had to say here. You've both done your research on here with those who stay sensitive for a long time. Even though the antibiotics/vaccines/dental procedures etc did bring on very bad WD symptoms for people, even acute like symptoms, they eventually went away. It wasn't an entire set back YEAR(S) with an "S" again. It was more like a long really crappy "bump" in the big picture.

[...]'s, I guess one could expect possibly an issue with 21 days of antibiotics. That's a long time on antibiotics. I think I remember talking with you about it on here before when it happened to you, and like everyone has said on here, it was rough but you got through. I went back & read some of your posts and you've had quite the journey with frequent UTIs, pneumonia, and needing several antibiotics over the years, and needing a steroid? (for BOOP a lung issue )  I'm not sure you took the steroid, but I'm so sorry you've had to go through all of this. I'm glad to hear that you last dental procedure went well, and that you and your dentist were able to come up with a plan that worked for you. I sincerely thank you for coming here to reply. Your detailed responses here are helping me tremendously.

Anyway, even though there's a lot of setback scenarios, some even pretty far out, everyone got through it. 

[...].. not only got through it, you are in college! How inspiring!
Your story gives me some major relief in all of this.

[...] & Its my time , thank you both for your help here for those of us who are sensitive.

Thanks 
Fortitude

Fortitude,

Thank you so much for your kind words, it means alot! Especially from one setback person to another!

I still have the same fears your do, but they seem to get easier with the more and more I push myself out of my comfort zone and the more time that has passed. I'll give you a few examples of situations that have been terrifying for me but have ultimately helped immensely in my healing and confidence.

I have young kids - so far this cold and flu season has been horrendous. It seems to be one illness after another that's hit the house since the end of August when they went back to school/daycare. Throughout essentially the last 3 years of my recovery I have been sick a total of 3 times (one of those being Covid), in the last 3.5 months I've been hit with 4 different viral illnesses. Before this I was beyond terrified to get sick, and although being healthy as much as possible moving forward is the ultimate goal, this has given me so much confidence that my body is very capable, that I have a strong immune system and that I can handle things that are thrown at me and it wont just result in the worst case scenario.

I successfully completed the 2.5 months of nursing clinicals I had this fall and guess where I was placed for half of that? On a covid unit. Yup, you read that correctly, I was working on a covid unit. This was probably the best and most terrifying exposure therapy I would have ever been through but it taught me a lot.
and honestly, from what I saw, Covid is nowhere near as deadly or worrisome as it once was, all of the people on the unit I was on had multiple comorbidities, were significantly older and no one got really sick, I can honestly say that the vast majority had symptoms as if they were dealing with a cold. This was reassuring in so many ways as I have had quite the fear of covid and the potential negative outcomes or need for medication that use to come with it. This just isn't the case for so many anymore. (What a relief that was to see first hand! It really helped with my fear of illness).
Seeing this has really helped me reintegrate into "normal" life too. Don't get me wrong, I still wash my hands frequently and I don't think I'll ever stop sanitizing when I leave a store but my overall fear of illness has improved immensely and I can thank exposure therapy for all of it.

Like you, I have also spoken with countless couches. The one thing that everyone I talk to reiterates is that these reactions typically become less and less severe the further out we get. I know [...] experience is different and im not trying to discount that at all, but I personally feel that the key is just getting as much time under our belts where we can just let our nervous system be without continually aggravating it. I have a close friend in the UK and she said that The Bristol Tranquillizer Project says that typically 5 years is the goal mark for this, and that they really don't tend to see many reactions after you've hit this milestone, especially if you can avoid anything that may aggravate your system for as long as possible (AB, steriods, other meds, alcohol etc).
Both Dr. Jen and Baylissa have told me multiple times as well that it really is rare to see someone have multiple setbacks, especially the further and further out that you get, and I'm just choosing to believe that moving forward. I know the really tough rare cases are going to be out there - heck I'm already one of them! What happened to me, or to you with the vaccine setback doesn't happen to the vast majority of people. But we've made it out the other side and although I do still have symptoms here and there, they are minor and manageable and if i had to live with them for the rest of my life, I would actually be okay with that. Although I do believe that over the next 6 months I will see even more improvement in every aspect of life.

You are doing an amazing job in your recovery Fortitude and I am so happy to hear that you are able to start to move forward and really regain your life. Its HARD. Its a totally different ballgame when you have had a setback. But I am so happy to hear that you are doing well. Keep going! And please keep me updated on your progress in the future? I really have enjoyed our conversations on these boards.

Thank you again for your kindness, encouragement and positivity.

I only have 6 months left of my nursing program now (which I never thought I would finish after I hit WD 3 years ago) and then I'm done and be back out in the real world... with a job, living life... normally? Kind of a terrifying but exciting thought!

I really do believe eventually we all get our lives back.

[[Buddie]]

Thanks for your story.

Oh yes! The setbacks. I had one at 5 years out because I decided to take a few Benadryl: I was in college for my RN, and couldn't sleep.
Big mistake! It flared me up, yet lasted only a month. Isn't that weird?
I've had no problem with dental work though.

I absolutely avoid Benadryl. What a devil it was on my CNS. In fact, the pharmacist told me it can set ppl back, and can have adverse side effects.

Stay away from Benadryl.

It's safe to assume, to keep stress down as much as possible; it's stress that boils under cortisol.

I'm 10 years out, and I do pretty good.

Anyway, thanks. I hope you pass those nursing clinicals. I know the nursing world very well, and it's stressful...so go easy on yourself.

💗

Thank you for your kind comment! The reassurance is always SO appreciated!

So you are a nurse too? Are you still in practice? Have you been practicing at all throughout the last 10 years? The long term goal for me is to get into integrated health but in order to do this in my country I have to get some time and experience under my belt first, which means at least a couple of years bedside in hospital. I haven't really been able to connect with other nurses who have been through this and would love to pick ones brain!

Although I struggle greatly with big pharma, I've already been able to have an impact on a few patients lives to avoid long term psych med use. So as much as I've gotten some heat from the community for continuing on with my education in this field knowing all that I know I think we need more like us out there, who have been medically harmed and are still working in the field! We just see things from such a different perspective then others do!!!

Anyways, thanks again for the comment and feedback, its always appreciated!

[[Buddie]]

No, I don't practice anymore. I've burned out on Healthcare for now.

You'll be fine: nursing is such a rewarding field, but you have to watch stress levels.

 

[[Buddie]]

Its my time,

I am so so happy for you!
To know you're back to life & you're in nursing school. Great news!

I try to stay off the boards more because it can be triggering, & potential med setbacks is probably one of the more stressful subjects because how can one get on with life if they're worried about their future with meds or procedures they may need?  BUT SURPRISINGLY, I found comfort in reading this because although you had a very rough time with your sensitivities, you still made it through and are on with your life. That gives me hope. It's what I needed to hear, that you are living life fully in spite of having to deal with med setbacks.

I myself had a 4 month setback after the flu shot, but I was only at 18 months when it happened.

The setback itself is not the crappiest part. The crappy part is because of that setback from the flu shot, I can get pretty worried about my future. Depending on how I feel that day, the fear from the worry can darn near break me sometimes, & it's totally from "what ifs" , not even something that is going on right now. It's catastrophizing about the future. It can rob me of my good days if I let it, & on some days I have to work hard not to let it. I'm at 3.5 years now, and I am doing better with this concern as time passes, and as I heal more, and try to regain my life. Everyone I talk to about this, coaches and those who have had sensitivities at one point, all gain confidence over time and it is no longer in the forefront  of their minds. They still know to be cautious if & when the time comes to need these things, but it no longer haunts their daily lives and they forget about it. That's the phase I am in now. Working on regaining my life without being plagued by these concerns.

It's my time & [...]:
In many ways I actually feel relief from reading what you both had to say here. You've both done your research on here with those who stay sensitive for a long time. Even though the antibiotics/vaccines/dental procedures etc did bring on very bad WD symptoms for people, even acute like symptoms, they eventually went away. It wasn't an entire set back YEAR(S) with an "S" again. It was more like a long really crappy "bump" in the big picture.

[...]'s, I guess one could expect possibly an issue with 21 days of antibiotics. That's a long time on antibiotics. I think I remember talking with you about it on here before when it happened to you, and like everyone has said on here, it was rough but you got through. I went back & read some of your posts and you've had quite the journey with frequent UTIs, pneumonia, and needing several antibiotics over the years, and needing a steroid? (for BOOP a lung issue )  I'm not sure you took the steroid, but I'm so sorry you've had to go through all of this. I'm glad to hear that you last dental procedure went well, and that you and your dentist were able to come up with a plan that worked for you. I sincerely thank you for coming here to reply. Your detailed responses here are helping me tremendously.

Anyway, even though there's a lot of setback scenarios, some even pretty far out, everyone got through it. 

[...].. not only got through it, you are in college! How inspiring!
Your story gives me some major relief in all of this.

[...] & Its my time , thank you both for your help here for those of us who are sensitive.

Thanks 
Fortitude

Fortitude,

Thank you so much for your kind words, it means alot! Especially from one setback person to another!

I still have the same fears your do, but they seem to get easier with the more and more I push myself out of my comfort zone and the more time that has passed. I'll give you a few examples of situations that have been terrifying for me but have ultimately helped immensely in my healing and confidence.

I have young kids - so far this cold and flu season has been horrendous. It seems to be one illness after another that's hit the house since the end of August when they went back to school/daycare. Throughout essentially the last 3 years of my recovery I have been sick a total of 3 times (one of those being Covid), in the last 3.5 months I've been hit with 4 different viral illnesses. Before this I was beyond terrified to get sick, and although being healthy as much as possible moving forward is the ultimate goal, this has given me so much confidence that my body is very capable, that I have a strong immune system and that I can handle things that are thrown at me and it wont just result in the worst case scenario.

I successfully completed the 2.5 months of nursing clinicals I had this fall and guess where I was placed for half of that? On a covid unit. Yup, you read that correctly, I was working on a covid unit. This was probably the best and most terrifying exposure therapy I would have ever been through but it taught me a lot.
and honestly, from what I saw, Covid is nowhere near as deadly or worrisome as it once was, all of the people on the unit I was on had multiple comorbidities, were significantly older and no one got really sick, I can honestly say that the vast majority had symptoms as if they were dealing with a cold. This was reassuring in so many ways as I have had quite the fear of covid and the potential negative outcomes or need for medication that use to come with it. This just isn't the case for so many anymore. (What a relief that was to see first hand! It really helped with my fear of illness).
Seeing this has really helped me reintegrate into "normal" life too. Don't get me wrong, I still wash my hands frequently and I don't think I'll ever stop sanitizing when I leave a store but my overall fear of illness has improved immensely and I can thank exposure therapy for all of it.

Like you, I have also spoken with countless couches. The one thing that everyone I talk to reiterates is that these reactions typically become less and less severe the further out we get. I know [...] experience is different and im not trying to discount that at all, but I personally feel that the key is just getting as much time under our belts where we can just let our nervous system be without continually aggravating it. I have a close friend in the UK and she said that The Bristol Tranquillizer Project says that typically 5 years is the goal mark for this, and that they really don't tend to see many reactions after you've hit this milestone, especially if you can avoid anything that may aggravate your system for as long as possible (AB, steriods, other meds, alcohol etc).
Both Dr. Jen and Baylissa have told me multiple times as well that it really is rare to see someone have multiple setbacks, especially the further and further out that you get, and I'm just choosing to believe that moving forward. I know the really tough rare cases are going to be out there - heck I'm already one of them! What happened to me, or to you with the vaccine setback doesn't happen to the vast majority of people. But we've made it out the other side and although I do still have symptoms here and there, they are minor and manageable and if i had to live with them for the rest of my life, I would actually be okay with that. Although I do believe that over the next 6 months I will see even more improvement in every aspect of life.

You are doing an amazing job in your recovery Fortitude and I am so happy to hear that you are able to start to move forward and really regain your life. Its HARD. Its a totally different ballgame when you have had a setback. But I am so happy to hear that you are doing well. Keep going! And please keep me updated on your progress in the future? I really have enjoyed our conversations on these boards.

Thank you again for your kindness, encouragement and positivity.

I only have 6 months left of my nursing program now (which I never thought I would finish after I hit WD 3 years ago) and then I'm done and be back out in the real world... with a job, living life... normally? Kind of a terrifying but exciting thought!

I really do believe eventually we all get our lives back.

It's My Time,

I was speechless reading your AMAZING reply!! You have DEFINITELY regained your life back and then some.

I mean wow you fought a brutal setback and worked on a Covid unit as a nurse??!! You must be wearing a cape! You're a superhero!

I cannot thank you enough for writing these caring & encouraging words. I REALLY needed to hear this from someone who truly understands.

I definitely do better when I stay busy, I can forget about withdrawal and "what if crap".  The "exposure therapy" you went through is beyond amazing and you did it all while selflessly caring for the suffering and the sick. I am beyond blown away. You couldn't get more exposed than that. I mean wow!

Confidence building is so important. Everytime I have a wave I have to rebuild. It is necessary.

Thank you so much !