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Setback Improvement - Will continue to update


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Hi everyone! The more and more reading I do the more I find that there are so many of us that seem to deal with setbacks. Setbacks due to medications, stress, supplements or other.

 

I'm 22 months off and for the majority of this year would have considered myself healed. On October 2nd, I was prescribed an antibiotic (doxycycline) for a suspected pneumonia, I only took 2 days worth before finding out that I didn't actually need to take the med (thanks to my wonderful family doctor who doubled checked everything for me i was able to stop taking it) but by this point it was already to late and I was thrown right back into acute WD, actually worse. The symptoms that I have experienced have honestly been worse then anything I have experienced during WD up until this point. Inability to eat (although I have continued to force myself to), waking up with rapid HR and anxiety surges, insomnia, eye floaters, severe anxiety, severe depression, shakiness, inner vibrations, headache, ear pain, jaw pain (probably from clenching constantly!) as well as others I'm sure I've forgot to mention.

 

Anyways enough about all the bad!!!! Everyday I am starting to see small improvements, and have been now since Thursday last week (so for the last 4 days or so). I am able to sleep ok again, my appetite has returned -not to the point it was at but I'm not having to force myself to eat, my severe anxiety has definitely improved as well as the depression, both are definitely still there but nowhere near as bad, and I am getting windows during the day and sometimes in the evening!

 

This has without a doubt been one of the most terrifying experiences to date but I am so happy, grateful and thankful to be seeing improvements! Even if they are small it is proof that someday I will get back to my old self again.

 

Even if no one comments I will continue to update this thread as time goes on, I have spent hours scanning this site for experiences with antibiotic setbacks and wish more people had documented theirs long term. Maybe my experience can give someone else hope someday!

 

I hope you are all healing quickly and have amazing windows today!

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Well, I slept last night and this morning I did not wake up with that nasty racing heart, severe anxiety, cortisol rush. First time in 18 days that I've woken up and felt normal.... That is a massive celebration for me today.

 

I think because I had a solid 6 months this year where I felt "Normal" its easy to forget how amazing and wonderful these feelings of normality really are. Im so happy, grateful and thankful for every small improvement and I will continue to celebrate and be thankful for the little things.  :smitten:

 

 

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Thank you for posting your updates. It is very important.

 

Looks like you had two antibiotic setbacks. One topical and then the oral one recently.

 

You are recovering from them. I am so happy for you that you're feeling better!

 

 

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Miss fortitude - very interesting what you say about the flu vaccine.i had it last October 20 too, and ended up in A and E on morphine. Start of all my issues.
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Miss fortitude - very interesting what you say about the flu vaccine.i had it last October 20 too, and ended up in A and E on morphine. Start of all my issues.

 

PPY

 

Hi. . I'm sorry you suffered. Are you better now after the flu vaccine?

 

What were your symptoms?

 

There still are a lot of people in withdrawal who get the flu shot with no issues. Then, there's a few like us.

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Thank you for posting your updates. It is very important.

 

Looks like you had two antibiotic setbacks. One topical and then the oral one recently.

 

You are recovering from them. I am so happy for you that you're feeling better!

 

Yes that's correct! My topical setback was uncomfortable but very manageable.... this oral antibiotic setback on the other hand has been worse then what acute WD was like for me. Absolutely terrifying.

 

How sensitive our nervous systems are just absolutely blows my mind. Im working with my therapist right now to rationalize my fear of "sickness" moving forward because I'm literally terrified of ever needing to take ANYTHING again... although I need to keep remembering that we heal and eventually to a point where we can tolerate the normal things in life again. I just wish I had a magic ball and I knew when that was going to be!!! lol!!!

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Todays update!

 

I once again woke up without the intense fear/anxiety and rapid HR. I also felt like I could have gone back to sleep without a problem which is something I also haven't felt since before this setback. My baseline seems to also be getting better, I still have periods of anxiety and sadness but its not the deep super intense/impending doom feeling! I feel like this is getting to be much more manageable and not like I'm just trying to survive from one minute to the next. Again just more to celebrate and be so thankful for!!!!!!  :smitten:

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Okay, so yesterday sucked. It definitely wasn't my worst day by any means but the anxiety and depression hit hard! Same thing with the gut pain. I find days like that to be really frustrating, especially with how it changes the way I think. I'm normally such a positive person and its so hard to not be just filled with fear of the future when you are feeling like crap. 

 

Today on the other hand has been AMAZING... all day long I haven't had any issues other then some gut problems. I'm happy, my appetite is mostly back and I have so much hope. Today may just be a window and I make wake up feeling different tomorrow but I am so thankful for getting to experience today and it gives me SO MUCH HOPE for the future.

 

Hang in there everyone.

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Hey Time! This is very good report. Looks like you’ll be back to feeling healed in no time. As you know this is a testimony that even after feeling healed, we can have setbacks. Careful where we tread is a must! Your experience and documenting this on here can save someone else some added grief. Thanks! Best wishes to you,. Hugs
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Hey Time! This is very good report. Looks like you’ll be back to feeling healed in no time. As you know this is a testimony that even after feeling healed, we can have setbacks. Careful where we tread is a must! Your experience and documenting this on here can save someone else some added grief. Thanks! Best wishes to you,. Hugs

 

Thank you for your kind words! I have definitely continued to see small improvements over the last few days and I hope that if anyone in the future ends up in my shoes that this will at least give them a small glimmer of hope that we're not stuck here forever. 

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Well its been a few days and I am happy to report that I am continuing to see improvements. Saturday felt like an almost normal day to me which was absolutely amazing, I will truly never take for granted again how good it feels to just feel "normal". Yesterday and today have been filled with some anxiety again but its been much more manageable then it was during the first 2/3 weeks. I had some wicked insomnia last night and was woken several times in absolute terror but that seems to be a one off night compared to the last few decent sleeps that I've been started to have again.

 

I can eat again and my appetite has returned, I still have some bouts of nausea but nothing compared to like it was.

I'm getting windows throughout the day - its not symptom filled 24/7

I started exercising again and that seems to also be helping significantly

The ear issues I have having - tinnitus and sounds being much louder then they should be has also been gone for a few days now

My brain fog seems to be improving - I am able to concentrate and understand much much better.

My gut pain and issues also seem to be slowly improving and are much less prominent.

 

I am still dealing with some pretty intense anxiety and depression at times as well as shakiness all throughout the day but again its what I would consider "manageable" not comfortable by any means but I can deal with it.

 

Only up from here!!

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Hi Mytime!

 

I am glad you are progressing! I am down to 4mgs from 15mgs of valium in 15 months - but the depression, exhaustion, and zero motivation is shocking

 

Can I ask: how long did it take from the time you started to reduce dose to being benzo free in December 2019?

 

I see that it took about one year for symptoms to reside

 

Your story is encouraging and we need some encouragement over in withdrawal support. I thought I would have been set free months ago BUT I'm in for the long haul

 

Thank you

 

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Hi Mytime!

 

I am glad you are progressing! I am down to 4mgs from 15mgs of valium in 15 months - but the depression, exhaustion, and zero motivation is shocking

 

Can I ask: how long did it take from the time you started to reduce dose to being benzo free in December 2019?

 

I see that it took about one year for symptoms to reside

 

Your story is encouraging and we need some encouragement over in withdrawal support. I thought I would have been set free months ago BUT I'm in for the long haul

 

Thank you

 

Hi!!

 

Thanks for pointing out that I didn't include that in my signature, ill make sure to add it/change it so it makes a bit more sense! I CT'd on December 2nd 2019. My doctor did not believe that my use could have caused dependence, (which is crazy because I went back and looked and he wrote me 5-6 scripts for 30tabs in 2019 alone, which is an average of 15 doses a month, although that's not how I took them) let alone believe me that I thought I was experiencing tolerance WD (which I was absolutely in!!!). He ultimately would not agree to put me on even a low dose to stabilize and then slowly taper. So that was that sadly!

 

It did take about a year for my symptoms to disappear. By Jan/Feb of this year I felt 100% "normal" again.

 

I'm so happy to hear that my story is encouraging! I really do not believe that everyone, or even most people deal with protracted withdrawal.

 

How are you doing?

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Hi Mytime!

 

I am glad you are progressing! I am down to 4mgs from 15mgs of valium in 15 months - but the depression, exhaustion, and zero motivation is shocking

 

Can I ask: how long did it take from the time you started to reduce dose to being benzo free in December 2019?

 

I see that it took about one year for symptoms to reside

 

Your story is encouraging and we need some encouragement over in withdrawal support. I thought I would have been set free months ago BUT I'm in for the long haul

 

Thank you

 

Hi!!

 

Thanks for pointing out that I didn't include that in my signature, ill make sure to add it/change it so it makes a bit more sense! I CT'd on December 2nd 2019. My doctor did not believe that my use could have caused dependence, (which is crazy because I went back and looked and he wrote me 5-6 scripts for 30tabs in 2019 alone, which is an average of 15 doses a month, although that's not how I took them) let alone believe me that I thought I was experiencing tolerance WD (which I was absolutely in!!!). He ultimately would not agree to put me on even a low dose to stabilize and then slowly taper. So that was that sadly!

 

It did take about a year for my symptoms to disappear. By Jan/Feb of this year I felt 100% "normal" again.

 

I'm so happy to hear that my story is encouraging! I really do not believe that everyone, or even most people deal with protracted withdrawal.

 

How are you doing?

 

Thank you so  much. I am quite sick mentally and physically. A little intimidating as I cannot lose my career.  But I'll make it. To hear you are 100% better is VERY encouraging.

 

You stated that you experienced tolerance withdrawal: what do you mean by this?

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Hi Mytime!

 

I am glad you are progressing! I am down to 4mgs from 15mgs of valium in 15 months - but the depression, exhaustion, and zero motivation is shocking

 

Can I ask: how long did it take from the time you started to reduce dose to being benzo free in December 2019?

 

I see that it took about one year for symptoms to reside

 

Your story is encouraging and we need some encouragement over in withdrawal support. I thought I would have been set free months ago BUT I'm in for the long haul

 

Thank you

 

Hi!!

 

Thanks for pointing out that I didn't include that in my signature, ill make sure to add it/change it so it makes a bit more sense! I CT'd on December 2nd 2019. My doctor did not believe that my use could have caused dependence, (which is crazy because I went back and looked and he wrote me 5-6 scripts for 30tabs in 2019 alone, which is an average of 15 doses a month, although that's not how I took them) let alone believe me that I thought I was experiencing tolerance WD (which I was absolutely in!!!). He ultimately would not agree to put me on even a low dose to stabilize and then slowly taper. So that was that sadly!

 

It did take about a year for my symptoms to disappear. By Jan/Feb of this year I felt 100% "normal" again.

 

I'm so happy to hear that my story is encouraging! I really do not believe that everyone, or even most people deal with protracted withdrawal.

 

How are you doing?

 

Thank you so  much. I am quite sick mentally and physically. A little intimidating as I cannot lose my career.  But I'll make it. To hear you are 100% better is VERY encouraging.

 

You stated that you experienced tolerance withdrawal: what do you mean by this?

 

 

I was having WD symtpoms and the dose I was taking was no longer effective, even when I updosed from .25-.5 to .75-1mg it did nothing and I was needing 1.5mg in order to get any relief of symtpoms.

 

I'm sorry to hear you are struggling so much. I totally understand having to function even though you feel so ill - I'm a stay at home mom to young children and in nursing school and had to "make it work" while in WD. It was hard, but I managed.

 

I hope you get relief from your symtpoms very soon! Hang in there!!

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No Problem at all! If you have any other questions that I can give you my experience on let me know!

I hope you heal very soon! Hang in there!

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Hi Friends,

 

I'm continuing to feel decent! Which to me is improvement. My sleep has been terrible the last 2 nights especially, I wake up every 1-2 hours with terrible anxiety, thankfully I am able to get back to sleep but this reoccurs several times a night. I've been waking up with anxiety in the morning but it definitely fades to a much more "manageable" anxiety as the day progresses... I'm even noticing period of time where I don't feel anxious/sad at all. After going through WD once already I know this is all part of the process but it definitely doesn't make it any less frustrating. I'm trying my best to practice radical acceptance because I need to stop letting my symptoms (when they are minor) and FEAR of this potentially (because it may not ever happen again) absolutely rule my life.

I've started to talk with a therapist who is well versed in health anxiety and I'm hopeful to gain some coping skills from that.

 

Hang in there everyone, it does get better.

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Good to hear you’re trying therapy. I also had therapy for a few months. It helped me gain more confidence and assurance that trouble don’t last always. I was admonished to write when I’m feeling bad or simply when intrusive thoughts try to hang around. Do a simple addressing of what they are. Call them out! Then go do something positive. Why? Because they’re symptoms just like all the other things. For example the thought comes up that I’m not getting better. Immediately I call it a liar then write down what HAS gotten better or is gone! I laugh at it.  :thumbsup:

Then I go watch Netflix, play a fun game or call someone who I enjoy talking to.  :thumbsup:

In other words…..observe and don’t participate in the benzo madness.

I hope this helps.

Please arm yourselves to control what you can control. Get some benzo tools to fight for your health. Accept, expect and distract. I’m 16 months off Ambien. It destroyed my life, my home, my health, my marriage, my relationships  etc but you know what? It didn’t destroy ME! I’m definitely headed back to life. It’s not easy but endurance is my best friend. It will seem like there’s no hope or you can’t do it but yes you can. I’m bedridden because of it but I’m fighting. Each day I ask myself, what CAN I do today to help me. In a wave, I say to myself….ok we know what this is. What can we do to ignore it until it passes? I talk to myself so much saying “ we” that I sound like Smeagol from Lord of the rings!  :laugh:

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Good to hear you’re trying therapy. I also had therapy for a few months. It helped me gain more confidence and assurance that trouble don’t last always. I was admonished to write when I’m feeling bad or simply when intrusive thoughts try to hang around. Do a simple addressing of what they are. Call them out! Then go do something positive. Why? Because they’re symptoms just like all the other things. For example the thought comes up that I’m not getting better. Immediately I call it a liar then write down what HAS gotten better or is gone! I laugh at it.  :thumbsup:

Then I go watch Netflix, play a fun game or call someone who I enjoy talking to.  :thumbsup:

In other words…..observe and don’t participate in the benzo madness.

I hope this helps.

Please arm yourselves to control what you can control. Get some benzo tools to fight for your health. Accept, expect and distract. I’m 16 months off Ambien. It destroyed my life, my home, my health, my marriage, my relationships  etc but you know what? It didn’t destroy ME! I’m definitely headed back to life. It’s not easy but endurance is my best friend. It will seem like there’s no hope or you can’t do it but yes you can. I’m bedridden because of it but I’m fighting. Each day I ask myself, what CAN I do today to help me. In a wave, I say to myself….ok we know what this is. What can we do to ignore it until it passes? I talk to myself so much saying “ we” that I sound like Smeagol from Lord of the rings!  :laugh:

 

This is fantastic advice! Truly.

I wish I had much more of the mentality that you do but I am working on it and defiantly always try and look on the bright side of things or at least take away positives from the situation.

Thank you for sharing this, I am going to start using some of these strategies.

I hope your start to feel better very very soon!! :smitten:

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Well so far I have had two really good days!

 

Although I'm still waking several times a night I am able to sleep again without the sickening anxiety all night long. I have been having some nightmares that leave me feeling very emotionally drained upon waking but I've been able to shake that feeling quite quickly.

I'm eating again and actually feeling hungry, I have very little to no anxiety throughout the day the last two days... dare I say I am feeling almost completely normal again?

I know this could change very quickly and this may just be a few days of a "window" but I'm okay with that. The fact that I can now see the light at the end of the tunnel lets me know that I can come back from a med induced setback - it may feel terribly inhumane but that it WILL END.

 

I may be totally out to lunch on this one but here are some things that I have been doing that I feel have helped and these are also things I did when I was in WD.

Very old school mentality but I wont touch anything that doesn't come from clean eating - no supplements of any sort, and no meds (not even Tylenol, although if I REALLY needed it I would take some, although I don't find Tylenol has ever helped me with benzo symptoms).

I drink tons of water everyday - literally gallons lol

I try and get moving, on days that it seems impossible ill go for a short walk outside and on days that I'm feeling a bit better I try and run on the elliptical for 30 minutes or so.

No sugar other then what comes from eating fruit, no honey, no maple syrup, nothing - for me sugar has always been a stimulant and until my NS is completely clamed down I don't want to add a single thing to it that might revv it up.

I eat as clean as possible, no processed foods, and try to consume as many fruits and veggies as possible (especially for their fiber/prebiotic properties).

Luckily I have not dealt with a histamine intolerance at any point during WD or my setbacks and because of this I try to add fermented foods to my diet to get probiotics - organic Kiefer is my go to but there's lots of other options ill eat too.

 

Now does any of this actually work? Your guess is as good as mine. But I do feel like I am setting myself up for the best possible chances at healing as I can.

 

The one mistake I feel like I made after coming out of WD and being "healed" in January was letting go of so many of these good habits. I wasn't as diligent and although as time goes on and i start to feel better again I will allow myself to once again indulge in something processed or a dessert im going to try and make it on special occasions only.

 

I have read on many different posts here and groups on Facebook that we should be waiting 2 years after our very last symptom is gone to basically "let our guard down" and although I don't ever intend to reintroduce alcohol into my life (at one point I definitely thought I would), I want to set myself up for the best possible chance at healing and overcoming any future setbacks now that I know that I'm still so sensitive to things.

 

I hope I continue to feel this good as the days go on but if I dont and im thrown back into a wave, ill be thankful for these last few amazing days. Either way, ill continue to document and update.

I hope my experience gives someone else the hope that you will come out of this OK! The symptoms that I experienced during this setback are far worse then my acute or WD phases ever were... and yet, IM HEALING!

 

Sending you all so much love, hang in there.  :smitten:

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Wow Time, this was excellent report. I’m finding that my setback is improving faster than last time as well. It was also worse than acute. Isn’t that strange? I’m so happy for your progress. It sounds like you’ve done all the right things. It will continue to give you the rewards as time passes. I’m hopeful reading your thread here. I also am careful what I eat and do. Although bedridden, I do what I can when I can but I have to be careful to push and not shove. I’m sure you know what I mean. I lay here after reading your last post thinking to myself what you must feel like right now after being slammed so hard but now feeling so close to normal. It’s funny how those two worlds of windows and waves are so extreme. I’m the same as you in my windows. I’m aware that they could close so I just enjoy them until they do. You know, Time, if I could just tolerate walking I could make more progress as you have. I’m sure I’ll get there soon enough. I’m not sure what caused my setback probably stress. I am remaining positive too that setbacks are temporary. I’ll bounce back as you are now.  :thumbsup: Thanks for giving me some added confidence.

My best wishes to you that your final window opens never to shut again. Hugs  :smitten:

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Wow Time, this was excellent report. I’m finding that my setback is improving faster than last time as well. It was also worse than acute. Isn’t that strange? I’m so happy for your progress. It sounds like you’ve done all the right things. It will continue to give you the rewards as time passes. I’m hopeful reading your thread here. I also am careful what I eat and do. Although bedridden, I do what I can when I can but I have to be careful to push and not shove. I’m sure you know what I mean. I lay here after reading your last post thinking to myself what you must feel like right now after being slammed so hard but now feeling so close to normal. It’s funny how those two worlds of windows and waves are so extreme. I’m the same as you in my windows. I’m aware that they could close so I just enjoy them until they do. You know, Time, if I could just tolerate walking I could make more progress as you have. I’m sure I’ll get there soon enough. I’m not sure what caused my setback probably stress. I am remaining positive too that setbacks are temporary. I’ll bounce back as you are now.  :thumbsup: Thanks for giving me some added confidence.

My best wishes to you that your final window opens never to shut again. Hugs  :smitten:

 

LadyDen,

 

I cried reading your response. You genuinely have such an amazing, positive outlook on things and I truly wish that I could always have an attitude more like yours even when I am struggling.

I totally get what your saying about not pushing it. For the first week of my setback I literally could not do anything and that's what was right for my body at the time! Even if you can tolerate some light stretching in bed or absolutely nothing at all then that's what you need to do and you should continue to listen to your body. You seem very entuned with yourself, which so many of us aren't. That's huge and I think will serve you very well in the long run.

I have spent a lot of time on here as well as on several of the FB groups and it seems that most setbacks don't last long - a few weeks to a few months, especially if we can try and hold out and not add any other meds to our systems during this time.. but even if we do, we will absolutely heal. I've spoken with people like Dr. Jenn and she has reassured me time and time again that we heal from these things and that setbacks don't take away from all the progress we have made so far (although they may feel terrible)..  she herself has suffered setbacks in her 10 years of working with the benzo community and has come out the other side completely healed and this gives me so much hope.

 

I truly hope you get a break from symptoms too and that you are able to do more things very soon! Do you mind me asking if you have help and support right now?

 

 

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