Medication Induced Setback Support

[[...]]

Thank you and yes a few days after the first course of amoxicillin the SX kicked in, I hope we are all well soon !

[[Wi...]]

Hello! I need your advice, people. I wrote my story here a while ago but won’t make you go back a few pages to read it so here we go again. I was first floxed (which works similarly to benzo wd) and then suffered damage from numerous short courses of psych drugs (see signature). I hit rock bottom, at least I thought it was rock bottom back then, at the beginning of 2021 because this is when I realised I developed mild akathisia. But compared to what I’m experiencing now what I had back then was just the mildest form you could get. Was of course told that was depression and anxiety. Yeah right! Refused treatment in psych hospital in which I landed with akathisia. Well, I felt 95% healed from that by July 2022, I had other issues from cipro still but was so happy aka was all but gone. Then it turned out I had some ovulation issues and I took the lowest dose of Clomid that I stopped after 4 days because I developed some rare visual side effects. 2-3 days later I started feeling off and developed acute akathisia again. I was on other drugs back then and on many supplements, but it was actually the only thing that I changed. Prior to that I tolerated all the supplements and a few meds very well, zero issues, of course they were not psych drugs aside from occasional hydroxyzine that never did anything bad. As the reaction happened I quit everything. So in August I started feeling really unwell after the Clomid and I was just counting days to my period because I thought that maybe my brain would settle down after it. The period never came because I got pregnant. Which was both a blessing and a nightmare.

 

So I had akathisia symptoms again, but it affected a few muscles only and of course I had this internal buzzing and stuff, a few adrenaline rushes, and so on. It was not as bad even though back then I thought it was. I tried to tell myself that okay, yeah, it happened, it will go away again, it will get better soon and so on because the last time I had it it looked exactly like this. The first time around I only had a few waves when I had symptoms for a few days without a break, and then it was waves and windows that were consistent, less severe with time. I could see and feel I was healing. This time it began as waves and windows again so I was full of hope. But being pregnant puts you at risk of having to take some drugs so I needed antacids first, having had GERD for years anyway. I first tried Rennie that did increase symptoms so I stopped it but stomach issues got bad and I needed to take my old PPI at the end of September. I think I reacted to it and decided not to take it again. Then in the middle of October I started deteriorating. I developed some bladder issues and thought it was a UTI so I took d-mannose and it caused some symptoms to explode, now the restless feelings started happening in my upper back on a daily basis. It was the centre of my buzzing and is to this day. I desperately took d-mannose for a few days and my bladder seemed fine but aka was bad. Then again I needed PPIs. Then I got another UTI at the beginning of November and I needed to take fosfomycin. The next day was horrific and the few following days were bad too but then had a window and thought I dodged a bullet. Still on PPI. At the end of November I had the worst wave ever with new symptoms again, akathisia was not only tension and buzzing but electric itch began. I knew that feeling from my previous encounter with akathisia but back then it had not been that severe and happened only a few times. I was then given a probiotic to prevent UTIs. The beginning of December was horrible, after the wave my baseline was worse but again I had a few windows. I was sick back then and did take some OTC stuff for a cold but those were natural things, no synthetic meds per se. After the cold windowish days began but around Christmas it got worse again. I was still on and off PPIs trying to quit. Tried taking Gaviscon instead of them. I would have amazing windows at least one day a week but each of them was followed by a long hellish wave. January was weird. I managed to stop PPIs! It began with awful days, had a window or two in the first half of it and then I had the best 5-day window yet - no symptoms for 2 days, very few for 3 of them. I attributed it to stopping PPIs. But I was diagnosed with pregnancy anemia and doc said I had to take iron so I started taking it. Then again had a few days of alternating waves and windows. I had a total of 9 windows in 18 days. But what followed is the worst wave ever in which I still am. I can sleep and evenings are still better and most of them I get somewhat functional but mornings and first half of the day or more are horrible. This internal electric burning  itch I first had in November got way worse in this wave, even though I did feel it a couple of times before this wave in December and January.  I have been bedridden since Monday because any stimulation makes it so much worse. I keep getting these electric jolts once in a while. I started getting some burning from tension. My brain started buzzing and feeling weird. It’s new. I have no idea if it was triggered by iron or what.

The fact is that I am consistently getting worse instead of better and the decline became apparent in October. I am scared for my life at this point.

 

It’s so difficult. If I could I would stop everything. But I am now on the probiotic, iron and Gaviscon (as needed). Probiotic prevents me from getting UTIs so reduces the risk of antibiotics. I was diagnosed as anemic so that’s why the iron. Gaviscon keeps me from taking more hefty meds such as PPIs. Considering stopping anyway because I am so desperate.

 

I feel stuck between rock and hard place, and you know what? I probably have GBS and was told that they give IV antibiotic in labour so that the baby is safer. This must be some kind of a sick joke and even though I love the baby so much I think I am going to decline it because I have already reached that place in which I feel alive only for the baby to be born. No idea how my husband will react to that but I think the risk for the mother this time is higher than the risk for the baby because I KNOW I will get worse and there is a 2% chance of the baby contracting the bacteria. But I can imagine how they will all try forcing it on me.

 

But here is my question.

What do you think?

Is it all these meds/supplements I needed?

Is it pregnancy hormones?

Am I just so damaged that I just keep getting worse?

 

Spontaneous deterioration seems least likely as why would it happen without a reason but who can tell. Had I not taken anything and had I not been pregnant I may have started healing already.

Definitely meds and supplements did affect me but not knowing what exactly makes it difficult. Are they all bad? For sure the antibiotic did me in and possibly d-mannose but would I still be getting worse since it was in October/November?

Pregnancy hormones are also a big deal but I see that many women felt better when pregnant whereas I am so so bad!

[[It...]]

Hello! I need your advice, people. I wrote my story here a while ago but won’t make you go back a few pages to read it so here we go again. I was first floxed (which works similarly to benzo wd) and then suffered damage from numerous short courses of psych drugs (see signature). I hit rock bottom, at least I thought it was rock bottom back then, at the beginning of 2021 because this is when I realised I developed mild akathisia. But compared to what I’m experiencing now what I had back then was just the mildest form you could get. Was of course told that was depression and anxiety. Yeah right! Refused treatment in psych hospital in which I landed with akathisia. Well, I felt 95% healed from that by July 2022, I had other issues from cipro still but was so happy aka was all but gone. Then it turned out I had some ovulation issues and I took the lowest dose of Clomid that I stopped after 4 days because I developed some rare visual side effects. 2-3 days later I started feeling off and developed acute akathisia again. I was on other drugs back then and on many supplements, but it was actually the only thing that I changed. Prior to that I tolerated all the supplements and a few meds very well, zero issues, of course they were not psych drugs aside from occasional hydroxyzine that never did anything bad. As the reaction happened I quit everything. So in August I started feeling really unwell after the Clomid and I was just counting days to my period because I thought that maybe my brain would settle down after it. The period never came because I got pregnant. Which was both a blessing and a nightmare.

 

So I had akathisia symptoms again, but it affected a few muscles only and of course I had this internal buzzing and stuff, a few adrenaline rushes, and so on. It was not as bad even though back then I thought it was. I tried to tell myself that okay, yeah, it happened, it will go away again, it will get better soon and so on because the last time I had it it looked exactly like this. The first time around I only had a few waves when I had symptoms for a few days without a break, and then it was waves and windows that were consistent, less severe with time. I could see and feel I was healing. This time it began as waves and windows again so I was full of hope. But being pregnant puts you at risk of having to take some drugs so I needed antacids first, having had GERD for years anyway. I first tried Rennie that did increase symptoms so I stopped it but stomach issues got bad and I needed to take my old PPI at the end of September. I think I reacted to it and decided not to take it again. Then in the middle of October I started deteriorating. I developed some bladder issues and thought it was a UTI so I took d-mannose and it caused some symptoms to explode, now the restless feelings started happening in my upper back on a daily basis. It was the centre of my buzzing and is to this day. I desperately took d-mannose for a few days and my bladder seemed fine but aka was bad. Then again I needed PPIs. Then I got another UTI at the beginning of November and I needed to take fosfomycin. The next day was horrific and the few following days were bad too but then had a window and thought I dodged a bullet. Still on PPI. At the end of November I had the worst wave ever with new symptoms again, akathisia was not only tension and buzzing but electric itch began. I knew that feeling from my previous encounter with akathisia but back then it had not been that severe and happened only a few times. I was then given a probiotic to prevent UTIs. The beginning of December was horrible, after the wave my baseline was worse but again I had a few windows. I was sick back then and did take some OTC stuff for a cold but those were natural things, no synthetic meds per se. After the cold windowish days began but around Christmas it got worse again. I was still on and off PPIs trying to quit. Tried taking Gaviscon instead of them. I would have amazing windows at least one day a week but each of them was followed by a long hellish wave. January was weird. I managed to stop PPIs! It began with awful days, had a window or two in the first half of it and then I had the best 5-day window yet - no symptoms for 2 days, very few for 3 of them. I attributed it to stopping PPIs. But I was diagnosed with pregnancy anemia and doc said I had to take iron so I started taking it. Then again had a few days of alternating waves and windows. I had a total of 9 windows in 18 days. But what followed is the worst wave ever in which I still am. I can sleep and evenings are still better and most of them I get somewhat functional but mornings and first half of the day or more are horrible. This internal electric burning  itch I first had in November got way worse in this wave, even though I did feel it a couple of times before this wave in December and January.  I have been bedridden since Monday because any stimulation makes it so much worse. I keep getting these electric jolts once in a while. I started getting some burning from tension. My brain started buzzing and feeling weird. It’s new. I have no idea if it was triggered by iron or what.

The fact is that I am consistently getting worse instead of better and the decline became apparent in October. I am scared for my life at this point.

 

It’s so difficult. If I could I would stop everything. But I am now on the probiotic, iron and Gaviscon (as needed). Probiotic prevents me from getting UTIs so reduces the risk of antibiotics. I was diagnosed as anemic so that’s why the iron. Gaviscon keeps me from taking more hefty meds such as PPIs. Considering stopping anyway because I am so desperate.

 

I feel stuck between rock and hard place, and you know what? I probably have GBS and was told that they give IV antibiotic in labour so that the baby is safer. This must be some kind of a sick joke and even though I love the baby so much I think I am going to decline it because I have already reached that place in which I feel alive only for the baby to be born. No idea how my husband will react to that but I think the risk for the mother this time is higher than the risk for the baby because I KNOW I will get worse and there is a 2% chance of the baby contracting the bacteria. But I can imagine how they will all try forcing it on me.

 

But here is my question.

What do you think?

Is it all these meds/supplements I needed?

Is it pregnancy hormones?

Am I just so damaged that I just keep getting worse?

 

Spontaneous deterioration seems least likely as why would it happen without a reason but who can tell. Had I not taken anything and had I not been pregnant I may have started healing already.

Definitely meds and supplements did affect me but not knowing what exactly makes it difficult. Are they all bad? For sure the antibiotic did me in and possibly d-mannose but would I still be getting worse since it was in October/November?

Pregnancy hormones are also a big deal but I see that many women felt better when pregnant whereas I am so so bad!

 

I'm so sorry that you are going through this. I entered WD when my youngest was just a year old and it was tough... but guess what? I managed and I promise that you will too. You are already a great mama venturing down this road while still having to deal with horrific withdrawals. Can I ask when you're due?

 

I don't really have much advice on the meds/supplements, I'm of the mentality that less is more and I still try to avoid everything at all costs even though I'm doing incredibly well now. But sometimes we need things and there's not a whole heck of a lot that we can do. I also recently found out that I am anemic, and I've been working with a holistic nutritionist to get my levels up. I've also taken and iron supplement on and off for the last month as well as I try to determine how I feel about taking it regularly. I searched until I found one that was literally iron and water, its a lower dose (5mg) but still helpful and you can take 2 a day. Is the iron supplement you're taking relatively clean? I know most tend to have a multitude of other vitamins in them (specifically B vitamins which we know can really aggravate people).

 

For the GERD issues when I was pregnant with my kids I actually used a mixture of water, baking soda and vinegar. Its creates sodium bicarb and helped me immensely. This was an old remedy from my husbands great grandma and I figured it was worth a shot - it worked really well. 

 

I had my antibiotic setback in October of 2021 so just over 16 months ago now and I have done a disgusting amount of research into this topic. What I can tell you that I have found over and over again is that benzo people seem to do exceptionally better with IV or IM(intramuscular) antibiotics then they do when they are taken orally. I would venture a guess that this is due to the fact that this is because the antibiotic isn't then absorbed through the gut and having its biggest impact there. Regardless of the reason for this, those in WD do seem to do better when antibiotics are given IV/IM then they are when given orally. So try not to panic that its going to be another horrific setback, because there's a good chance that you will do just fine.

 

You are not just so damaged that you keep getting worse, you will absolutely recover and get better from this, it might seem achingly slow sometimes but I truly believe that we all heal.

 

No matter what you decide with all of this, know you are doing a great job. Trust your heart and your gut. 

 

My setback was absolutely insane, and I had a solid 4 months of feeling completely healed earlier in the year so a setback worse then all 13 months of my initial WD was just mind-blowing to me, but I've made it to the other side, and I know you will to.

[[Wi...]]

My due date is in May, I am 28 weeks now. My issues are more of a set of adverse reactions rather than wd but still the process is similar. Yeah the iron supplement seems clean but I feel like my body completely overreacts to every synthetic substance. Because honestly this is a wave from a horror movie and I don’t understand why I am not improving but detoriorating. Bedridden since Monday.

[[Fi...]]

Just an update to my anesthesia induced setback.

 

It's been 6.5 months and there has been progress. I can now walk, read, watch TV,  work a little and I taught myself to knit.

 

My remaining symptoms are:

Anhedonia: This is my most crushing symptom. I worry I will never feel happiness again. I can feel anger and sadness but not joy. 

Insomnia: Still have issues with sleep but it has improved. I get about 3 hours of sleep plus micro sleep. I do have frequent nights of no sleep and occasionally a night of 6 hours.

Mirtazapine/Remeron: I still have deep regret over taking this medication again when I was so sick after the surgery. Except at the beginning, it has not given me any sleep support. I am tapering now and am down 23%.  I worry I will never get off but I also know that is my withdrawal brain at work.

 

If the anhedonia lifted, I know I could face anything.

 

Final Healing

[[Wi...]]

Ugh, does anyone have any idea why for many of us setbacks are so much worse than the original issues?

 

I swear when I had symptoms from the original injury it was bad but manageable except for a couple of nasty initial waves and I saw progress quickly, healing was linear for the most part and I could live, push through, waves were shorter, windows were completely normal and I was 95% healed after 1,5 years and able to tolerate many things.

 

Whereas after this setback from not even psych meds I am so so so much worse. Like the last time it was maybe 10-20% of the intensity I have now and it was also less frequent. I am able to function only during very few days, have crisis days all the time and most days are a nightmare I have to relive time after time. Plus I am still getting worse 6 months out from the setback probably due to an antibiotic a little over 3 months ago (that’s when things started getting exponentially worse) and pregnancy hormones seem not to let it heal.

 

It’s very difficult to have any hope this time

[[It...]]

Ugh, does anyone have any idea why for many of us setbacks are so much worse than the original issues?

 

I swear when I had symptoms from the original injury it was bad but manageable except for a couple of nasty initial waves and I saw progress quickly, healing was linear for the most part and I could live, push through, waves were shorter, windows were completely normal and I was 95% healed after 1,5 years and able to tolerate many things.

 

Whereas after this setback from not even psych meds I am so so so much worse. Like the last time it was maybe 10-20% of the intensity I have now and it was also less frequent. I am able to function only during very few days, have crisis days all the time and most days are a nightmare I have to relive time after time. Plus I am still getting worse 6 months out from the setback probably due to an antibiotic a little over 3 months ago (that’s when things started getting exponentially worse) and pregnancy hormones seem not to let it heal.

 

It’s very difficult to have any hope this time

 

This sounds like you had a setback within a setback (caused by the antibiotics 3 months ago). You will heal from this, it just takes time. Your body truly does have an innate ability to heal and repair itself. You will recover from this.

 

As for why were worse, I wish I knew as well as that was the same situation for me. I was "healed" after 13 months and yet the setback from the antibiotic at 22 months was like no hell I has ever experienced the first time around.

 

What I can tell you is that I am basically healed now. You will get your health back!!! Sending you the biggest hug.

[[Wi...]]

Thanks. Today is the worst day ever. Honestly no idea if this is akathisia or not but I have this internal itchy burn and I cannot move as moving makes it worse so it doesn't seem to be aka but I feel TERRIBLE. Bad thoughts today, very bad. I don't know how to make it.

[[Fi...]]

Thanks. Today is the worst day ever. Honestly no idea if this is akathisia or not but I have this internal itchy burn and I cannot move as moving makes it worse so it doesn't seem to be aka but I feel TERRIBLE. Bad thoughts today, very bad. I don't know how to make it.

 

Hi WHS,

 

I empathize with what you are going through at this time.

I had all those scary thoughts too and was terrified I would not get better.  But I have. I'm not completely better at 6.5 months from my setback but I have improved. My setback was caused by anesthesia that, unbeknownst to me, has about 4 different medications involved. So your journey does not have to be as long as mine.

 

The first 3 months were the worst and then things started to get better.

 

Your brain and body will heal and you will get throgh this. Your only job is to keep going, one day at a time. It will get better. 

 

FH

 

I

[[Wi...]]

For me it's getting worse and it's been 3,5 months from the antibiotic

 

I don't know, maybe it's the pregnancy hormones making it so much worse. I feel like I am doomed, honestly. Never been that terrified in my entire life and I have been through a lot. I am getting symptoms I have never had.

[[Fi...]]

I too had symptoms I never had in benzo withdrawal and also felt I was getting worse.  I was terrified most of the time as well.  I realized that terror was a symptom and that one of the reasons I felt I was getting worse was the fatigue from enduring such horrible symptoms for months.

 

Its hard to believe things will get better but they will.

[[Wi...]]

I hope they will because I am at my wits end, it's horrific.

[[bi...]]

Hi All,

 

I am 4 years into WD and 5 months into a severe amoxicillin setback which gave me extreme aka and mental symptoms- panic/terror/intrusive thoughts, etc. The setback has been way worse than my prior WD and I wasn't close to being healed prior which is why I assume it was maybe so severe. The first 2 months of the setback were the worst and very extreme and the past 3 months things were slowly getting better and more manageable and I thought I was on the healing trajectory. However, this week, things became extreme again and I am back to pacing with extreme mental symptoms. I don't know why its gotten worse all of a sudden. I am on my period, but the last one wasn't as bad. I used Neosporin for a few days earlier in the week when things started getting bad so maybe that's contributing as well? idk. I also feel like I might be getting sick but idk if its just because the symptoms are so extreme atm. I'm just freaking out because when symptoms get like this they are unbearable and I thought the worst was behind me. Has this happened to anyone else? Thanks.

[[Wi...]]

Yeah, my setback began 6 months ago and then 4 months ago I was given an antibiotic and I feel I am getting worse every day... February has been brutal.

[[bi...]]

I'm really sorry. I hope you see some improvements soon. Have you seen improvements at all and then started getting worse? Or has it just been gradually worse since? I don't get why I was doing better for 3 months and then all of a sudden having extreme symptoms again? Is it my period? Did Neosporin cause it? Like I don't get why Neosporin would contribute. idk I'm just freaking out because the symptoms are randomly SO extreme.

[[Wi...]]

I am so sensitive that everything affects me, I can tolerate zero supplements or meds, zero. I was relatively stable for the first 2 months but after the antibiotic it's only been getting worse. I started getting new or stronger aka symptoms basically right after the antibiotic and they either added up or got worse every week, but I still had windows. I had 9 window days in January even though it was pretty bad in between but February has been a nightmare. New symptoms. Absolutely terrified now this worsening will never stop.

 

Sorry you are not feeling well too.

[[bi...]]

I'm sorry. I guess the one good thing is it looks like most of the people on this thread no longer frequent it so hopefully that means most everyone is healed or significantly better.

[[Wi...]]

I hope that's the case.

[[bi...]]

How are you doing today? I've been up since 2:30 am pacing and all of my mental stuff is back raging. I can't wait until this bad wave passes. I was doing so much better before this

[[Au...]]

Hi all,

 

After tapering I finally jumped off K about 5 months ago. While I have been noticing some improvement, I still have quite a ways to go. Unfortunately, just over a week ago I had a corticosteroid injection in my knee not understanding that this could negatively impact my recovery. I’ve now been in a wave since the injection, with some of the symptoms feeling like the symptoms I had in acute.

 

I’m panicking. I’ve rested so much, and I can’t believe I was stupid enough to make this mistake. Had no idea that a steroid injection could impact withdrawal. How long does the steroid stay in my system? Will this set me back in my recovery process? Is this just as bad as reinstating, or is it different? Greatly appreciate any feedback I can get.

[[Th...]]

Is it just as bad as reinstating? it varies. Alcohol, hormones, caffeine, steroids (even in creams, so look at any lotions and be careful what you get at nail salons), antibiotics are known causes of setbacks. Some vitamins and supplements are as well but not to everyone. Someone might have a little wave with reinstating, others will have a bigger one. Same is true for everything listed.

 

Will it set you back? After the wave some people go back to baseline. Some people recover slowly over time.

I would focus on getting through this right now, it will not last forever.

 

 

[[Wi...]]

How are you doing today? I've been up since 2:30 am pacing and all of my mental stuff is back raging. I can't wait until this bad wave passes. I was doing so much better before this

 

For me it's been the same. I have t spend my days in bed to feel better. I don't have pacing but I have weird internal itch/burning that develops when I get active and if I try to ignore it it morphs into bac bone crushing pain. Haaate it. Plus vibrations in my back from brain to butt. My symptoms cycle a lot, change. Yesterday had a 2,5-hour window. It was such a relief.

[[Wi...]]

Hi all,

 

After tapering I finally jumped off K about 5 months ago. While I have been noticing some improvement, I still have quite a ways to go. Unfortunately, just over a week ago I had a corticosteroid injection in my knee not understanding that this could negatively impact my recovery. I’ve now been in a wave since the injection, with some of the symptoms feeling like the symptoms I had in acute.

 

I’m panicking. I’ve rested so much, and I can’t believe I was stupid enough to make this mistake. Had no idea that a steroid injection could impact withdrawal. How long does the steroid stay in my system? Will this set me back in my recovery process? Is this just as bad as reinstating, or is it different? Greatly appreciate any feedback I can get.

 

Yeah, nobody can tell. My setbacks were actually worse than psych med damage but many people heal quickly so it's not the rule.

[[Wi...]]

How are you doing today? I've been up since 2:30 am pacing and all of my mental stuff is back raging. I can't wait until this bad wave passes. I was doing so much better before this

 

How are you? I am a bit better today but still baaaad. May I ask what physical sensations do you get with this? I have inner vibrations, electric jolts when it's bad and restlessness in muscles manifesting itself as awful internal itch.

[[bi...]]

That's good you are a bit better. Hopefully you will see more improvements soon!

 

I'm still not doing great, in a nasty wave and trying to figure what set it off. I have internal pulsing/vibrations, tinnitus, horrible vision issues- (fuzzy vision, blurry vision, distorted vision), distorted visual and sound perception (like everything looks/sounds different in my environment), my brain can't handle too much stimuli like when I watch tv or something, brain zaps, brain pulling/squeezing/pressure/buzzing, extreme restlessness especially in my feet which causes pacing, and all of the mental stuff too. Fun times! I had a lot of that before in my WD prior to the setback (like vision, pulsing, brain stuff), but it got worse with the AB and I used to have EXTREME fatigue but now that's been replaced with extreme restlessness/pacing/aka (which I never had before). I'm 4 years off and now with the setback I'm just really worn out by this all and don't see it ever ending