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


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I've debated writing this for a little while now, and I've held off because we all want to read those stories where people are 110%, invincible and never have to look back, but that's not my story. What my story is though, even if I'm not 110% yet is an amazing comeback from where I once was, and that's what I want to share with you.

 

My story is a bit different then most, I'm 32 months out and initially thought I was healed at 13-14 months off. From the end of January 2021 until Mid July 2021 I was completely symtpom free after a grueling 13 months WD. I still avoided alcohol and Caffeine but I was able to return to talking some basic supplements (vitamin C, D, Zinc, magnesium, probiotics etc) without any issues. During the summer of 2021 I experienced my first setback. I had a massive rosacea flare up and was prescribed a topical ointment with the antibiotic metronidazole (flagyl) in it. Out of fear of having another terrible in rosacea flare and against my better judgement I started using this face gel multiple times a day. I thought for sure my system was strong enough to handle it, healed enough to handle it, I had been symtpom free for 4+ months after all! Boy was I wrong... After about 10 weeks of multiple times a day use the symtpoms started to creep back in again. The cortisol surges in the morning, the vibrations, the anxiety. Thankfully this setback was pretty mild but it was also extremely discouraging. So many people get to come out the other side of withdrawal and never look back, they are just healed and that wasn't the case for me. Ive since spoken with Baylissa about this happening to me and she reassured me that this is actually more common then we know. We feel healed but our body and nervous system is still doing some fine tuning, which is why it's so important that we give our systems ample time after WD before we start adding certain substances back into our lives and if we choose to do it sooner that we make sure that we go slow and see how our system reacts. Fast forward 3 months to October 2021, my family and I got hit by a nasty virus, after multiple negative Covid tests and a productive cough that wouldn't go away I decided I should be seen. Again, against my better judgement I let an ER doctor prescribe me the antibiotic Doxycycline for a "suspected" chest infection. I remember sitting in the bed begging him to let me come back in 48 hours for repeat bloodwork and a repeat chest x-ray as my chest x-ray showed no signs of pneumonia, yet him and his colleague thought it was better to proactively treat for one. I eventually decided I would take his word for it and roll the dice with the doxycycline. This was the worst mistake of my life. At this point I was 22 months off and I had read so many stories of people doing okay in WD with Antibiotics. "I had felt healed once before, my body must be able to handle these meds now" I thought to myself, and I proceeded to take my first and second doses. By the night of day 2 I was back in full blown acute WD. But this time, acute was worse then anything I could have ever imagined, I had all the same debilitating symtpoms I had during the initial 13 months of my WD along with dozens of others I had never experienced before. To say that this setback was horrendous is an absolute understatement!

 

I'm almost 11 months out from the date of the Doxycycline setback and although I still have days with minor lingering symtpoms, I live the fullest life. My life has returned to normal - I can exercise, eat what I want (although I still maintain a very clean diet and will for the rest of my life) and for the most part my sleep is great although I still get the occasional cortisol surge here and there. My biggest accomplishment to date has been returning to nursing school. This was something I started before I hit WD and I'm currently working through my required clinical rotations in hospital. This experience has given me such an insight into the suffering of others and has given me an empathy for people I would have never had before. Although I struggle immensely with western medicine and big pharma, I want to be able to be the advocate for my future patients that nobody ever was for me. The long term goal is to get into integrated functional healthcare but in order to get there, I have to finish this portion of it first, but I'm almost there. By spring next year I'll be graduated! It's been such a long road and I never thought I'd be able to finish with all that WD has thrown my way these last 32 months.

 

The reason I wanted to write a success story now, even though I can't yet claim to be 110% is because I need to take a step away for the time being, I need to focus on the last bits of my healing and now more then ever I think it's important to watch what I marinate my nervous system in. This community has been beyond incredible support for me along the way and I've made some friends who I hope to stay in contact with long term but for the time being, I need to step back and try to focus on living a normal life again outside of WD. One thing that I've noticed so frequently in the countless hours I've spent scrolling through this forum, is how many members leave and never come back to write a success story, to tell people that they've gotten better. I mean who can blame them really? Who would want to recount this experience years later after you've healed?

 

Although I'm not permanently saying goodbye and I'll still occasionally pop in and out, I didn't want to be the person that just left and potentially didn't come back without any word on how I was doing. I want people to know that we do get better, that our life does come back to us and that we do heal, it just takes some of us a little bit more time then others. It could be some time before I'm ready to officially declare that I'm 110%, and at what stage do we really know that anyways? When do we really know that we're in the clear? When we can drink again? Handle certain medications without the risk of setback again? For me, all of that is so up in the air with my history of setbacks and sensitivities and will be for some time. But one thing that I know for certain is that I have overcome SO MUCH, and if I had to rate it I'd say I'm about 95% healed and completely functional, and to me, that is absolutely a success story! Now I'm working on not living in fear of the future and just enjoying everyday for what it is, symptoms or not and the gifts that it brings.

 

I wanted to leave this with some of the tools that I found to be the most helpful in aiding with my recovery each time.

 

- Mindset. You will heal! Believe this.

- Radical Acceptance. We can't change the inhumane shitshow of a situation we've been handed but what we can do is not make the wave worse by overly stressing about it. The more we freak out and resist the symtpoms the stronger they seem to come on. Know it will pass as it has every time before and for every person who has come before us. This is a skill and gets better over time.

-Movement. Exercise when I could and just daily movement when I couldn't.

- A really clean diet of whole foods. I truly do not believe that there's any one specific diet that's "best", you have to find what works for your body! For me it was natural whole foods. I cut out most inflammatory foods like gluten, sugar and dairy and when I did eat them it was in small amounts. It's truly incredible the changes that I've seen in my body since radically changing my diet (for example I no longer deal with rosacea, my skin is clearer then ever and I have lost over 55lbs).

- Yoga and meditation. Meditation helped me so much with my sleep and yoga helped my unwind my body during the day.

- Breathing exercises. YouTube is a great place to find these and they help immensely with stress and anxiety! I've recently become obsessed with the Wim Hof breathing method but there are many more for beginners that I found to be incredibly helpful.

- Inspirational books/audiobooks/podcasts/speakers that are not related specifically to Benzo WD! There are countless books/audiobooks/podcasts/speakers that tell the stories of people who have recovered from some of the most severe, horrendous illnesses and if they can overcome some of the worst odds, we can definitely get out of this mess! I find this also got me put of the Benzo feedback loop in my head. If anyone is ever interested in some of my favorites I would be happy to share! I also couldnt sit and "read" from a book for a very long time, that's where audiobooks and YouTube came in handy!

- Find yourself some really good WD support friends, this is hard to go through alone and even in my case with the most supportive family and spouse it was still very hard on everyone. I will not be able to thank the "buddies" that I've made through this enough, you know who are you and you positively impact my life to this day. I cannot thank you enough from the bottom of my heart.

- Get into therapy. I cannot stress this enough. I have been seeing a psycologist who specializes in medical injury and she has absolutely chnaged my life, my outlook and made be feel so validated.

- I have found working with a Benzo coach to be very helpful, there's a few of them out there now and they all seem to have very different approaches. The one I ultimately worked with the most had veiws that aligned the most with mine and gave me the kick in the ass that I needed when I needed it the most!

 

I'm sure I'm forgetting to add alot of what I once though I would when I finally went to write a "success story", and by no means do I feel I need to get into the nitty gritty of what has happened to me during WD or the countless terrible symtpoms I experienced, but what I do want you to know is that you will get better. Slowly but surely, one minute, one hour, one day at a time, we are undoubtedly healing. And if you're ever facing a setback as I have, know it's not a life sentence, pick yourself back up and keep pushing forward. It gets better, it gets so much better.

 

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It’s my time,

You are right to take a break from BB, and focus on your life and not the reminders of this journey.

 

I am 8 plus years out, felt I was completely recovered at 3 years. But then I have had 3 major setbacks, due to to antibiotics ( penicillin) and due to dental procedures with Carbocaine. I reached out to Baylissa also during these setbacks, which put me right back into acute.

 

Baylissa believes we are not completely healed , yet and need more time. I do believe we are left with sensitivities, and must always be aware of everything we put in our bodies.

 

There are many like me, that I have remained in contact with 8-11 years out who have had setbacks due to vaccines, antibiotics, dental procedures.  It helps to be aware and trust yourself, 

 

I just wanted to emphasize to all, that these setbacks do happen many years out, so be aware. Luckily, we can and do recover from these setbacks, with time and more time.

 

Always, cindy

 

 

 

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It’s my time,

You are right to take a break from BB, and focus on your life and not the reminders of this journey.

 

I am 8 plus years out, felt I was completely recovered at 3 years. But then I have had 3 major setbacks, due to to antibiotics ( penicillin) and due to dental procedures with Carbocaine. I reached out to Baylissa also during these setbacks, which put me right back into acute.

 

Baylissa believes we are not completely healed , yet and need more time. I do believe we are left with sensitivities, and must always be aware of everything we put in our bodies.

 

There are many like me, that I have remained in contact with 8-11 years out who have had setbacks due to vaccines, antibiotics, dental procedures.  It helps to be aware and trust yourself, 

 

I just wanted to emphasize to all, that these setbacks do happen many years out, so be aware. Luckily, we can and do recover from these setbacks, with time and more time.

 

Always, cindy

 

Cindy,

 

Thank you for your kind reply! It's nice to know that I am not alone but I am also sad to hear that you have struggled so terribly with setbacks as well. I've also been in contact with Baylissa who told me the same thing, it means sense - we feel better but our nervous system just isn't completely healed yet.

May I ask you a question? As time went on did your setbacks become shorter in duration? This is the part that I'm currently struggling with the most, I feel relatively healed the vast majority of the time but the fear of another 10+ month setback is absolutely terrifying.

Baylissa shared with me her own terrible experience with Doxycycline when she was in WD and then her ability to take it a few years later without issues, but I do completely agree with you that we need to be cautious for years to come. I will be cautious for the rest of my life after this experience.

 

Thank you again for your reply, it means alot  :smitten:

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It’s my time,

Great question……and a tough one to answer.  I will do my best to share my experience and that of others who have had setbacks who I remain in contact with via personal email.

 

My thoughts to share.  For me and some others we have found that BB was helpful in the beginning of our journey, but not so much now after years of being protracted. It is so difficult for us to offer continued support to others , because we find it is not healthy for us with the constant reminders , please don’t view this as being selfish but rather as self survival, trying to lead a somewhat normal life, but unfortunately, we continue to have our struggles.  I understand your need to take a break from BB.

 

I believe  some of us will always remain sensitive to medications, vaccines , dental procedures, anesthesia for Colonscopies or surgeries.if we can do our best to try to avoid triggers, we need to do so, but sometimes exposure to antibiotics or anesthesia can’t be avoided, and we need to prepare ourselves. Most physicians do not understand. I always avoid Fluroquinolones drugs, but there have been times when I couldn’t avoid taking an antibiotic for pneumonia or UTI. I found that penicillin caused me to have a setback ( after 7 years) for 2 months, right back into horrific WD , including fear, anxiety, crying and physical symptoms of pain, burning, numbness.  I recovered from this setback got to about 85%.

 

Then dental procedures happened , (8 years out) where per the recommendation of the benzo setback list, I requested Carbocaine plain, but it caused me to go back into WD for four months. However, interesting to note, I had 4 Carbocaine injections over  a 6 week period, after the first Carbocaine injection, I notice slight symptoms mostly in the background, by the 4 injection, I got slammed, including physical and psych symptoms.  I also have another BB friend who reacted after one Carbocaine injection and her setback lasted a few weeks.

 

I recently had to have dental work done again and went to a new dentist. She really listened to me about protracted WD and my reaction to Carbocaine. she questioned whether the setback or reaction to the Carbocaine was “dose specific” or “time specific”. I needed to have 3 fillings plus crown prep, instead of scheduling this dental work in segments, spread out over time, she suggested to do all the work at one setting, and also recommended to use the novacaine  with a combo of septra/ epi drug. She stated with Carbocaine plain it would require more of the drug to get numb rather than the novacaine combo. She also gave me the lowest dose possible , so

I had 4 injections of novacaine  over 3 hours and completed the dental work in one visit, versus spreading it out. I did not react so far, and it been 10 days since this dental work.

 

I also have been on numerous ABs for UTIs, during the past 5 years, initially I was ok with penicillin, and did not have a setback from the

 

 

penicillin in  year 3-5,  and  at 3-5 years out, benzo WD  setback was not even on my mind, I thought it was behind me, so the slight symptoms I had from the penicillin, I didn’t recognize it as  WD symptoms. , I just thought it was a slight side effect of the AB. But at  7 years out after 21 days of an antibiotic for UTI and pneumonia, the bizarre symptoms of WD came back, and I knew I was in benzo hell again, and couldn’t believe after 7 years, I was back into it,,,,,,,,the fear, the crying, the physical pain………pure hell, lasted two months.

 

I have another  BB friend who recovered at 3 years and was 9 years out, after getting her first moderna vaccine, she reacted within 8 hours of the vaccine, and went right back into benzo hell. It has been seven months for her, she said she is better but not fully recovered.

 

It does help tremendously for me to focus on the activities I can do, and not focus on the benzo symptoms that still remain. For the most part this recent setback that lasted  4 months, the symptoms that remain are more in the background not in the forefront. 

 

In summary, I have had two major setbacks , the first at 7 years out due to 21 days of antibiotics, and it took 2 months to recover and be able to engage in normal activities again. The second setback at 8 years after Carbocaine injections, took 4 months to recover and resume normal activities again. And a few minor setbacks, flareups lasting a few days or weeks after antibiotics or anesthesia following Colonscopy.

 

So the bottom line is I still have setbacks at 8.5 years out,  I remain sensitive to drugs that hit gaba A blood/ brain barrier. But with time, I have been able to recover from the setbacks,,,,,,,,I am so tired , just so worn out from this process……,,,,trying to lead a normal life and not let fear rule me.

 

Hope this info helps you in some way.

 

Always, Cindy

 

 

 

 

 

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Itismttime,

 

Thank you so much for your encouraging success story. I'm so happy to hear how well you are doing. I remember when you had your setback. Looks like your life has really turned around. I'm so looking forward to turning a corner here soon because I've been in a terrible wave for a number of months. Sending you big hugs!

 

LiveLife

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It’s my time,

Great question……and a tough one to answer.  I will do my best to share my experience and that of others who have had setbacks who I remain in contact with via personal email.

 

My thoughts to share.  For me and some others we have found that BB was helpful in the beginning of our journey, but not so much now after years of being protracted. It is so difficult for us to offer continued support to others , because we find it is not healthy for us with the constant reminders , please don’t view this as being selfish but rather as self survival, trying to lead a somewhat normal life, but unfortunately, we continue to have our struggles.  I understand your need to take a break from BB.

 

I believe  some of us will always remain sensitive to medications, vaccines , dental procedures, anesthesia for Colonscopies or surgeries.if we can do our best to try to avoid triggers, we need to do so, but sometimes exposure to antibiotics or anesthesia can’t be avoided, and we need to prepare ourselves. Most physicians do not understand. I always avoid Fluroquinolones drugs, but there have been times when I couldn’t avoid taking an antibiotic for pneumonia or UTI. I found that penicillin caused me to have a setback ( after 7 years) for 2 months, right back into horrific WD , including fear, anxiety, crying and physical symptoms of pain, burning, numbness.  I recovered from this setback got to about 85%.

 

Then dental procedures happened , (8 years out) where per the recommendation of the benzo setback list, I requested Carbocaine plain, but it caused me to go back into WD for four months. However, interesting to note, I had 4 Carbocaine injections over  a 6 week period, after the first Carbocaine injection, I notice slight symptoms mostly in the background, by the 4 injection, I got slammed, including physical and psych symptoms.  I also have another BB friend who reacted after one Carbocaine injection and her setback lasted a few weeks.

 

I recently had to have dental work done again and went to a new dentist. She really listened to me about protracted WD and my reaction to Carbocaine. she questioned whether the setback or reaction to the Carbocaine was “dose specific” or “time specific”. I needed to have 3 fillings plus crown prep, instead of scheduling this dental work in segments, spread out over time, she suggested to do all the work at one setting, and also recommended to use the novacaine  with a combo of septra/ epi drug. She stated with Carbocaine plain it would require more of the drug to get numb rather than the novacaine combo. She also gave me the lowest dose possible , so

I had 4 injections of novacaine  over 3 hours and completed the dental work in one visit, versus spreading it out. I did not react so far, and it been 10 days since this dental work.

 

I also have been on numerous ABs for UTIs, during the past 5 years, initially I was ok with penicillin, and did not have a setback from the

 

 

penicillin in  year 3-5,  and  at 3-5 years out, benzo WD  setback was not even on my mind, I thought it was behind me, so the slight symptoms I had from the penicillin, I didn’t recognize it as  WD symptoms. , I just thought it was a slight side effect of the AB. But at  7 years out after 21 days of an antibiotic for UTI and pneumonia, the bizarre symptoms of WD came back, and I knew I was in benzo hell again, and couldn’t believe after 7 years, I was back into it,,,,,,,,the fear, the crying, the physical pain………pure hell, lasted two months.

 

I have another  BB friend who recovered at 3 years and was 9 years out, after getting her first moderna vaccine, she reacted within 8 hours of the vaccine, and went right back into benzo hell. It has been seven months for her, she said she is better but not fully recovered.

 

It does help tremendously for me to focus on the activities I can do, and not focus on the benzo symptoms that still remain. For the most part this recent setback that lasted  4 months, the symptoms that remain are more in the background not in the forefront. 

 

In summary, I have had two major setbacks , the first at 7 years out due to 21 days of antibiotics, and it took 2 months to recover and be able to engage in normal activities again. The second setback at 8 years after Carbocaine injections, took 4 months to recover and resume normal activities again. And a few minor setbacks, flareups lasting a few days or weeks after antibiotics or anesthesia following Colonscopy.

 

So the bottom line is I still have setbacks at 8.5 years out,  I remain sensitive to drugs that hit gaba A blood/ brain barrier. But with time, I have been able to recover from the setbacks,,,,,,,,I am so tired , just so worn out from this process……,,,,trying to lead a normal life and not let fear rule me.

 

Hope this info helps you in some way.

 

Always, Cindy

 

Cindy,

 

Thank you for taking the time to share your story with me, this has been helpful and so incredibly kind of you.

 

I have also met a few others who have had setbacks several years out. I do have to admit that I've only spoken with a few that have had setbacks after years of healing though, which leads me to wonder if its a benzo issue or if another drug itself has had neurotoxic effects on our system (which then leads into your point of remaining sensitivites). Antibiotics for example can do this to completely normal people, as is well documented in the quinolone family as well as others, its just not as common. I've come across many stories over the last 10 months (because I've had all this time to go digging) on people who have been put on back to back doses of AB, antivirals, steriods, vaccines etc and suddenly end up with symptoms that are similar, if not identical to those that we experience in benzo WD

 

This experience has been incredibly eye opening for me and regardless of the cause, I will be insanely cautious with medications for the rest of my life - anything that I put into my body honestly!

 

I am SO sorry that you are still experiencing this hell as far out as you are, no doubt that you're exhausted. So many people walk off, have a few months of healing and then leave this all behind them and its so cruel that that's just not the case for some. I know it may be hard to feel or believe this far out but I do believe that you will eventually see full healing!!!

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Itismttime,

 

Thank you so much for your encouraging success story. I'm so happy to hear how well you are doing. I remember when you had your setback. Looks like your life has really turned around. I'm so looking forward to turning a corner here soon because I've been in a terrible wave for a number of months. Sending you big hugs!

 

LiveLife

 

Live,

 

I adore your comments, you have to be one of the most uplifting and supportive people on this board!

 

My life really has turned around, I've been quite functional since January but I felt like a "switch flicked" at the end of June when I was in the middle of my last set of nursing clinicals and life has been so much better since. I do still have minor lingering stuff here and there but life is otherwise normal. Honestly if I could get rid of my fear of the future I would feel pretty darn invincible! I'm told that that just comes in time with more experience and confidence under my belt, its been slow but the more I interact in "normal" life the easier and easier things do seem to be getting from a fear of the future standpoint.

 

I hope too that you see a major turn soon, you are getting there, just keep holding on and pushing forward, you will absolutely heal! And please keep in touch, I cant tell you how much all of your supportive comments have meant to me  :smitten:

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I really appreciated hearing the experience that others have had with setbacks.  The same has happened to me in 2020 at the ER for nausea and then again 2022 after dental procedures.  I was instructed to take penicillin also. I continue to heal each day. I continue to be cautious of what I eat.  I do not take any medications. Baylissa has an online site that has helped me tremendously to stay focused and positive.  Mccare.org has many suggestions and tools to use on this journey.  Best wishes to all.  Peace and healing.  :-*
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  • 2 weeks later...

What a wonderful success story in spite of setbacks. I wish you all the best in your new life. I’m sure you will be a wonderful caring nurse and an advocate for warning patients about these medications when they’re not necessary. I’m cheering you on to finish your studies. I agree that some people even after feeling healed for awhile may have to always be mindful of future medications. I’m certainly going to be extra careful after having this experience. I’m still in such disbelief that a little Ambien ( zolpidem) pill did this to me…..completely debilitated me. Took my whole life from me because all I could do was be in bed for 2 years. I did get out of bed for almost 2 months at the 1 year milestone. Got slammed out of the blue so back to bedridden for nearly another year. About 3 months ago I started making progress. Now I’m in bed only when needed only in a rougher wave. I still can’t tolerate riding in a car and certainly can’t drive or walk far. But I was able to not need a caregiver and my walker is under the bed collecting dust. My main symptoms through this entire time has been vestibular symptoms- unbalanced, ataxia and boatiness. They’ve kept me a prisoner in my own home all this time. As I said, they are finally improving but it is slow as well as some days decent ( I can go for short walks) and some days rough ( very unbalanced so I’m in bed). If I didn’t have those symptoms I’d be an easy 85-90% healed because the other symptoms are very mild and not rendering me debilitated. I can function with them. I’m 26 months still stuck at home. My neurologist suggested that I don’t push things ( force myself to ride in a car, exercise too much, etc). He said my brain isn’t healed enough to handle a push. My only thing is….ok so when do I start? Don’t I need to expose my brain to normal functioning so it can get used to it?

Cindy I see you were on the same medication I was on. Zolpidem was the ONLY medication I was on.

So how did any of you start pushing things a bit? How do you know when and how much? Did you have trouble riding in a car or walking? If so, what helped?

 

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Lady 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, cindy

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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.

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Lady 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, cindy

Cindy 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!

:smitten: :smitten: :smitten: :smitten: :smitten: :smitten: :smitten: :smitten: :smitten: :smitten:

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  • 2 weeks later...

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.

 

 

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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.

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  • 1 month later...

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 & Cindys:

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.

 

Cindy'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. 

 

Itsmytime.. not only got through it, you are in college! How inspiring!

Your story gives me some major relief in all of this.

 

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

 

Thanks  :smitten:

Fortitude

 

 

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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.

 

💗

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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 & Cindys:

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.

 

Cindy'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. 

 

Itsmytime.. not only got through it, you are in college! How inspiring!

Your story gives me some major relief in all of this.

 

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

 

Thanks  :smitten:

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 cindys 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.

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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!

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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.

 

 

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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 & Cindys:

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.

 

Cindy'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. 

 

Itsmytime.. not only got through it, you are in college! How inspiring!

Your story gives me some major relief in all of this.

 

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

 

Thanks  :smitten:

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 cindys 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 !  :smitten:

 

 

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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 & Cindys:

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.

 

Cindy'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. 

 

Itsmytime.. not only got through it, you are in college! How inspiring!

Your story gives me some major relief in all of this.

 

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

 

Thanks  :smitten:

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 cindys 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 !  :smitten:

 

Miss Fortitude,

 

I cant begin to tell you how much your response means to me and how touched I feel by it. Literally you had me tearing up reading it. No one outside of people like us truly understand how hard what I just did was and honestly I've caught some flack from the community for continuing on with nursing because of its connection to big pharma. I think if we had more health care providers that had experienced medical harm out working we would have a very different healthcare system and that's why I have stayed the course and continued with my schooling even after going through wd and this setback. Even as a student nurse I've already been able to change the trajectory of a few elderly seniors cocktail of meds that they were about to be prescribed (thanks to working with a few very open minded doctors) so I can already see the impact that my experience and suffering can have on others. 

 

Your words of praise and encouragement honestly mean more to me then I can explain, and your a complete stranger to me, but I know that deep down, you understand this better then anyone.

 

Thank you again for your kindness, that was truly touching reading your response.

 

 

I agree about doing better when your busy, I am the exact same way! I'm back at home now for 6 months finishing up the remainder of my theory courses required for my education and I defiantly notice what's left of my lingering minor symptoms when I'm not out and about distracted. I genuinely completely forget about them when I'm out "living life" but when I'm at home and I have the opportunity to not be busy that's when I notice that they pop up.

 

I have a feeling that the next several months will come with so many positive changes for you and I!

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I'm sorry it took me so long to read your story, thank you for sharing it.  Success comes in many forms and its individual for us all so I'm glad you felt comfortable letting us know what success if for you.  And I hope it wasn't anyone in this community giving you a hard time for continuing your professional path and education, you're right, we need people on the inside.  :smitten:
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I'm sorry it took me so long to read your story, thank you for sharing it.  Success comes in many forms and its individual for us all so I'm glad you felt comfortable letting us know what success if for you.  And I hope it wasn't anyone in this community giving you a hard time for continuing your professional path and education, you're right, we need people on the inside.  :smitten:

 

Pamseter,

 

Thank you so much for your comment! The admin/mod team here is so busy and I don't ever expect you guys to comment, please don't apologize! You have helped me over the years with your advice, knowledge and advice more then you know, there were times where one simple comment of yours pulled me out of a very scared or dark place. So thank you, you truly have impacted my life!

 

It's sadly been all over that I've caught flack from the benzo community but its okay, I do understand the anger, fear and resentment towards western medicine. I know I'll never be able to change it as a whole but If I can impact individuals lives, even to just be able to tell someone "I believe you," that's worth its weight in gold for me!

 

Thanks again for the comment! :smitten:

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  • 3 months later...

Things have drastically improved in the last 6 months (which I didn't even think was possible). The "lingering" symptoms have become less lingering, life has continued to become more and more normal and I'm so much happier.

 

I started the Gupta Program in the beginning of January in hopes that it would help me with the fear I was still dealing with - I had no expectations for anything else to come from it. Well any of the last of the minor food sensitivities that I had are now gone (to which I give thanks to doing the Gupta program) and my fear of the future/illness/setback etc has improved immensely! I am coping with absolutely everything SO MUCH BETTER. Dare I say most days I feel COMPLETELY normal? How amazing is that.

 

For anyone who is at the tale end of this and still dealing with some minor things I would definitely look into doing some brain retraining. Its for sure not a magic "fix all" but I have seen some incredible things come from it.

 

I'm a few days shy of 39 months off and although this has felt achingly slow I can only imagine how much better things will continue to get in a few months time. When I initially wrote this "success story" it was at a point where I has finally just come to terms with where I was at and figured that If I lived with what remained of WD then so be it, I had at least regained most of my life. But what I didn't know was what another 6 months of healing would give me. Its like night and day the improvements that I've seen.     

 

This whole thing is like peeling an onion. There seems to be so many layers to it.

 

Anyways, If you're feeling disheartened today, know it gets better. It really gets SO much better.

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  • 11 months later...

Yearly update:

I cant believe its been a year since I wrote my last update. 2023 was full of everything. I had some wicked waves and some crazy long windows, it was quite the roller coaster. I wish I could say that I'm 100% but I'm just not there yet. I'm definitely still learning how to live with the symptoms when I'm in flare but my symptoms don't stop me from living. I've continued to see improvement, although this process is long and slow. This year I've been working regularly, traveling and living a normal life. The fears of illness have disappeared, I've learned to protect every last ounce of healing that I've had and to make myself and my well being a primary priority, even if others don't understand.  Although I am still dealing with flares of varying lengths and intensity I am living again and I can see the continued healing!

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