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Medication Induced Setback Support


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Muddlefoot that is lovely news!  I'm so glad you are able to work and enjoy life again!  Thanks for stopping by.  :smitten:
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I received an email from benzo buddies just a minute ago and it made me think of you guys. I wanted to drop by and tell you all that I am better. It took the better part of a year and a half for me to really get back on my feet, but I am back to working as a stylist, raising my girls, and enjoying my life. I was going through an immense amount of stress when I had my setback and I truly believe that contributed to the length of time it took me to really start healing again. Stress is so detrimental to our already sensitive nervous system.

 

I still have symptoms, but they are tolerable, and can typically be curtailed with a nap. Lol. I hope you all are doing well. Hang in there, regardless and run towards any glimpse of freedom from this you my find.  <3

 

I’m SOO happy for you! I’m still healing at snails pace from the antibiotic! I cannot WAIT for the day I can speak the words you just said! Did things just slowly melt away for you or any big jumps in healing? Be well and stay well  :smitten:

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  • 3 weeks later...

Hi everyone, I am so glad I found this thread.  I am on week 3 of an acute setback from ONE dose of an antibiotic.  I had food poisoning and residual symptoms that weren't going away (although I now come to find out this can be normal) and actually took an antibiotic which has always been my worst nightmare - to have a setback.  I was feeling 100% healed at around 19/20 months off and then at 22 months off took the antibiotic and have now been housebound/bedridden.  I have completely lost my appetite, I have lost tons of weight, I have nausea, burning all over, red eyes, and my gut and digestion is awful.  I don't want to take probiotics because they have revved me up in the past.  I honestly thought the whole benzo thing was behind me.

 

It's hard just to make it through the days right now and my period is about to come which, as some of you know, revvs things even more.

 

How are you all coping? Sending love through this one of the hardest times of our lives. 

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Hi everyone, I am so glad I found this thread.  I am on week 3 of an acute setback from ONE dose of an antibiotic.  I had food poisoning and residual symptoms that weren't going away (although I now come to find out this can be normal) and actually took an antibiotic which has always been my worst nightmare - to have a setback.  I was feeling 100% healed at around 19/20 months off and then at 22 months off took the antibiotic and have now been housebound/bedridden.  I have completely lost my appetite, I have lost tons of weight, I have nausea, burning all over, red eyes, and my gut and digestion is awful.  I don't want to take probiotics because they have revved me up in the past.  I honestly thought the whole benzo thing was behind me.

 

It's hard just to make it through the days right now and my period is about to come which, as some of you know, revvs things even more.

 

How are you all coping? Sending love through this one of the hardest times of our lives.

 

Im so sorry to hear that. Sounds like what happened to me too except I wasn’t healed yet when my reaction happened. (only to one dose also) You aren’t alone. This seems to be happening to others a lot around here. Are your symptoms the same as before? How are you now?

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  • 2 weeks later...
Hi sorry for delay I just haven’t been well enough to respond. It’s been a month now and I feel about the same. My gut is beyond messed up and i just don’t know what to do. I am on a very limited diet and have lost a lot of weight. I have oral thrush and don’t want to take anything for it because of health anxiety now due to the setback. I just wonder if I am actually going to be able to heal from this? It seems so extreme to have such bad digestive issues. Would love any advice or encouragement from others!
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I am in my 5th week of my setback  I was 27 months benzo free, 24 months 100 percent better and feeling normal again.  I had a procedure done at the hospital and was given versed and Compazine.  I had an immediate setback and have been awful since.  I don't understand why I was so sensitive because I have chronic migraines and occipital neuralgia, so in the last two years I've taken fioricet with codeine several times (it's my rescue drug when migraines get unbearable, only thing that works), I've had steroid injections in my occipital nerves, and have taken oral steroids for a week for occipital pain.  None of these things has caused me any distress.  I don't understand it.  Why would I be fine with those medications and now I'm in benzo hell again?  Now I don't know what to do for my pain because I'm terrified to ever touch any kind of medication again.  Does anyone know if because I've had this setback I'll be extra sensitive to everything else even though it was fine before?

 

FYI  I'm am well aware that versed is a benzo.  The ashton manual states that a one time short acting benzo for surgery shouldn't set you back. 

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[77...]

FYI  I'm am well aware that versed is a benzo.  The ashton manual states that a one time short acting benzo for surgery shouldn't set you back. 

 

Ashton Manual does contain some errors.

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Update:

I am now 1 year since the doxy and even though I am full of symptoms, there are some improvements.  To give some hope, at the risk of jinxing myself, I have not had anxiety in 1 whole week!  This has/had been one of the worst symptoms for me, it was daily for over 8 months at almost 10/10. So I can glimpse shades of the old me somewhere inside.  My worst sxs now are severe body ache/fatigue, and a back rash.  I have many others, but at least they are tolerable. I have to say that even though I am far from out of the woods, I do not feel like I am in crisis anymore (maybe because the anxiety let up?).  Here's to more improvements!

 

@Wonderwoman23, Just to let you know that I too had "oral thrush". It was like a pseudomembrane inside my lips.  This eventually went away after a while (5 mths?).  My digestive system is also still messed up, with a big "benzo-belly"; but there are some improvements - bowel movements are more regular and the ab pain is now tolerable and less frequent.

 

@Fishergirl, I suspect that the multiple steroid uses contributed to your reaction.  Steroids is what started me down this horror path - note that steroids bind to GABA receptors just like benzos which is why they need to be tapered, so you were probably kindling yourself with the multiple uses. And the Versed was the straw that broke the camel's back.  You will get better, but it may take a while.

 

@Waiting12 and @KatrinaG, how are you doing, I hope you are seeing some improvements.

 

All the best to everyone.

 

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Good to hear about the anxiety lessening, the oral thrush going away and digestive issues getting better. I wish we could do a FB support group for this topic as I don’t always get over here to BB. I will try and come back here more often because could really use the support right now.

 

I had a little window in the wave baseline yesterday but then last night the waves started horribly bad and I was up all night with intense nerve burning and cortisol surges. I didn’t sleep a wink. I just tried to eat a bit more food but the IBS I was left with after food poisoning and the antibiotic just had my gut in shreds and I can feel it’s in a big flare as well as the nerve burning is starting again. Honestly, this is worse than my other waves by a long long shot and the longest I have been in acute. I wonder at this point if it’s even benzo withdrawal and not neurotoxicity from the antibiotic as well as SIBO and Candida. I am just so sick. I guess what ever it is I just need to keep hoping and praying that my body heals from it.

 

How is everyone else doing?

 

Lots of love to all of you. We gotta stick together!

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Hi sorry for delay I just haven’t been well enough to respond. It’s been a month now and I feel about the same. My gut is beyond messed up and i just don’t know what to do. I am on a very limited diet and have lost a lot of weight. I have oral thrush and don’t want to take anything for it because of health anxiety now due to the setback. I just wonder if I am actually going to be able to heal from this? It seems so extreme to have such bad digestive issues. Would love any advice or encouragement from others!

 

Raw garlic. It’s a natural antibiotic, antifungal, antiviral, and antiparasitic. I can  send you links of info and studies done if you’re interested. I’ve used it with success since I can’t tolerate any pharma.

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Update:

I am now 1 year since the doxy and even though I am full of symptoms, there are some improvements.  To give some hope, at the risk of jinxing myself, I have not had anxiety in 1 whole week!  This has/had been one of the worst symptoms for me, it was daily for over 8 months at almost 10/10. So I can glimpse shades of the old me somewhere inside.  My worst sxs now are severe body ache/fatigue, and a back rash.  I have many others, but at least they are tolerable. I have to say that even though I am far from out of the woods, I do not feel like I am in crisis anymore (maybe because the anxiety let up?).  Here's to more improvements!

 

@Wonderwoman23, Just to let you know that I too had "oral thrush". It was like a pseudomembrane inside my lips.  This eventually went away after a while (5 mths?).  My digestive system is also still messed up, with a big "benzo-belly"; but there are some improvements - bowel movements are more regular and the ab pain is now tolerable and less frequent.

 

@Fishergirl, I suspect that the multiple steroid uses contributed to your reaction.  Steroids is what started me down this horror path - note that steroids bind to GABA receptors just like benzos which is why they need to be tapered, so you were probably kindling yourself with the multiple uses. And the Versed was the straw that broke the camel's back.  You will get better, but it may take a while.

 

@Waiting12 and @KatrinaG, how are you doing, I hope you are seeing some improvements.

 

All the best to everyone.

 

So good to hear from you and that you’re seeing improvements. I’m like 23 months since my huge setback/ floxing reaction to amoxicillin. Slowly getting better. Still have horror nerve pain/agitation everywhere in my body (worst symptom)  that comes and goes, chemical anxiety happens less often, still chemical depression 247, but isn’t as severe (sometimes it gets very bad still), still Anhedonia, no memory, intrusives are way less often but happen at times. My hormones still rule the show. I have tons of other symptoms that rotate, get stronger and weaker and pop in and out. Weird things like half my tongue will feel like there’s tinfoil on it, or tendon issues, vision problems, sensitivities, can’t handle stress, etc.

 

I feel like I’ve lost hope that I’ll ever fully heal at this point. I just want a more comfortable life than im living now. I live in fear of more reactions. I’m sensitive to tons of things. Now there a hefty dose of ptsd with reactions so at times I can’t tell if it’s a true cns physical  reaction (which is my biggest fear ever)  to something or if My cns has a physical reaction from just being in an akathisia nightmare for 4 years and creates symptoms from ptsd.

 

My fiancé and I also broke up so I had to move in with a family member. I’ve just been pretty hopeless lately with a lot of stress and sadness. I just keep going hoping and praying things get better. I am doing a LOT more this summer compared to last summer, even though many days are hell. So that IS something. Healing happens. I just pray the healing is permanent. I’m so scared I’ll need something pharma and get cns injured  again with akathisia and the rest.

 

Still no full windows. I gauge windows by being able to feel positive emotions and such. The last few second long glimpses I got of ‘feeling’ were like a year ago. I have better days and bad days, then the handful of horrid days per month. Just chugging along.

 

Love to you all. Sending you all healing thoughts. Keep in touch or pm me.

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Hi, i'm so glad to find this thread, i'm in a terrible antibiotic setback since this April, it's been 4 months of very intense suffering. I'm so sorry we are all in the same boat. I was 24 months off benzos this spring, and doing a lot better, though not fully healed when I got very sick with flu, at first i would get diagnosed with covid as my sx were so similar, but then I got tested, it came back negative, I kept getting worse, no doctor would see me in their office because they were afraid of covid patients, so i finally had a doctor prescribe me Augmentin over telehealth, and as I kept getting worse, I finally took it, and things just went downhill from there.. I wanted to share and compare my sx to see if you are experiencing anything similar, because at this point i'm starting to wonder if it's benzo withdrawal and antibiotic setback any more, or if maybe I have some other virus that got activated by this flu and the whole stress that I went through thinking that I had covid and being so sick. My sx are very similar to CFS, i'm so fatigued, i've never been so fatigued in my whole life, i basically stay in my chair all day long, but I can't sleep, I basically sit in my chair with awful chest and stomack tightness, and tingling/paralysis like feeling in my arms and legs, it feels most of the time as if I'm being crushed by something very heavy, and I feel as if I weight 500 lbs at all times. I attempt to exercise whenever I have a small window, but it's really hard, I have to rest all the time after every little activity. I still have terrible flu like feeling, a very sore throat, some post nasal drip, hypoglycemia ( i have to eat every 2 hours or i start shaking), my whole body is very sore. I have depression now and terrible chemical anxiety especially health anxiety almost all the time. The sx that have left at 4 months are: insomnia is almost gone( i'm so thankful for that), i still have body jerks as I'm falling asleep and wake up very early, but at least I sleep. GI issues are much improved, coughing is improved and tight throat feeling and post nasal drip are slightly better. But I'm taking a bunch of supplements, and have actually been getting nad/vitamin c/ glutathione infusions ( have had 6 of them so far), and I do think that sleep is improved due to these infusions. Is anybody else experienced or experienced these types of sx? does it sound like a setback of benzowithdrawal, or could it be something else? i'm currently having my doctor test me for all kinds of viruses/ candida and a bunch of other things, because i feel as if the flu/ antibiotic set something else in my body, i just can't believe it's all withdrawal. This is just an awful unbelieveable experience, i hope you all are feeling better, if you want to share your sx here, i'd be glad to compare them, sending you healing thoughts ( oh and my brain fog is so bad, and not letting up at all, is anybody else suffering from extreme brain fog?)
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@[Wa...]

 

So sorry you are still in the thick of it.  I glad you are seeing some improvements, but I know when symptoms exist, you know that you are far from healed.  Time really is the only answer.  Please do not lose hope.  It really is the only thing that keeps me going.  You have to be able to hang on for something.

 

I too am so afraid of other meds, my son is school aged and I am afraid of him bringing Covid at home. Don't know how I will manage if I get it.  I have already told my husband that I will refuse the steroids and antibiotics that are standard for its treatment.  At the risk of sounding morbid, someone I know recently died from Covid treatment (survived Covid but had severe internal bleeding from the high-dose steroid she was given.  In fact, I had massive nosebleeds when I had my high-dose steroid shot 2 years ago, luckily I managed somehow).  Ugh! As if we don't have enough problems from these setbacks...

 

Today I am in a wave, but it is nothing like it was before.  The horrendous body ache/fatigue seem to have lifted - this along with anxiety - were my worst two symptoms.  I still do have strong planter-faciitis-like pain of my feet and mild occasional anxiety (3/10).  I have strong exercise intolerance, hair loss and wake up after every sleep cycle with a racing heart and sometimes in a sweat; I also get the jerks while falling asleep. Sometimes I wake up with strong anxiety too. My severe back rash seems improved. Also improved are the unbelievable skin dryness and productive throat-clearing.  I have not been able to exercise in years as before this setback I was recovering from remeron WD.  So my muscles are mush.  All-in-all, I have reason to be hopeful, and so should all of us.

 

As a recap, I had a steroid shot 2 years ago whole I was in remeron WD  that sent me to hell, took a course of Augmentin 5 months later that exacerbated everything, then doxycycline 6 months later and so I am still here 2 years since the steroid shot, but finally getting some glimmer of light.

 

And I still have to taper the trazodone I am on  :(

 

@KathyM, sorry about your experience too.  The fact that you are seeing improvements after 4 months is great.  It may take a while to be fully healed, but you are on your way.  Just hang in there.

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  • 2 weeks later...

Hi just wondering how everyone here is doing? I’m now at month 2. Still bedridden (I sit up on top of covers mainly but also have some days where I lie in bed all day). Some symptoms have left but the ones that remain are really hard and some days I don’t think I’ll make it. I often feel like I’m dying. I am always looking for hope and reassurance that this will pass and let up as its my longest and most disabled wave to date in 3.5 years.

 

Still have the oral thrush!

 

Would love to hear how others are doing especially any wins! Or if it that’s okay too.

 

Xo

 

 

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  • 2 weeks later...
Hi, everyone, not been here for a long time, l’m sorry to say l am still not doing well after the steroids and doxy setback, l don’t have many windows just the symptoms easing at times but currently in a wave from hell worst ever, l’m hoping it’s a case of getting worse before it gets better, it’s chard to believe that this as been caused by the above it feels worse than withdrawal itself. I hope you are all doing ok Athsey and Waiting you seem to be doing so much better than me l hope you continue to see improvements.....Love to you all Katxxx
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  • 1 month later...

Hi everyone. I haven’t checked in here in awhile I am more active on FB. I am now almost 4 months out. Symptoms are more manageable on a whole although I’ve been in a worse wave for about three weeks after a nice break where I was getting more windows even in the bad baseline. I was starting to drive a bit and walk a bit more but it’s gotten quite hard again and the wave seems to be getting worse. I am hoping this means it’s peaking and will eventually subside again. I am not holding my breath for any major improvements as this is now the longest I’ve ever been this sick and disabled.

 

I am up without a lot of sleep because I woke up in a bad wave and my neighbor downstairs has been loud. Just decided to get up and make some oatmeal and get on BB.

 

Isn’t it unbelievable how bad we all are? I have often cry in grief around all I’ve lost.

 

I need to see some success stories after setbacks if anyone knows where to find them.

 

Sending love to all.

 

Anya

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  • 4 weeks later...

I am in my 5th week of my setback  I was 27 months benzo free, 24 months 100 percent better and feeling normal again.  I had a procedure done at the hospital and was given versed and Compazine.  I had an immediate setback and have been awful since.  I don't understand why I was so sensitive because I have chronic migraines and occipital neuralgia, so in the last two years I've taken fioricet with codeine several times (it's my rescue drug when migraines get unbearable, only thing that works), I've had steroid injections in my occipital nerves, and have taken oral steroids for a week for occipital pain.  None of these things has caused me any distress.  I don't understand it.  Why would I be fine with those medications and now I'm in benzo hell again?  Now I don't know what to do for my pain because I'm terrified to ever touch any kind of medication again.  Does anyone know if because I've had this setback I'll be extra sensitive to everything else even though it was fine before?

 

FYI  I'm am well aware that versed is a benzo.  The ashton manual states that a one time short acting benzo for surgery shouldn't set you back.

 

I know your post is from a few months ago.

 

What happened to you is from the Compazine. I had Reglan during withdrawal just one dose 1x in the ER for a migraine. Reglan, Compazine, & Phenergan are all old antipsychotics from the 60's. Yes, they use them for stomach issues, nausea & vomiting, & gastroparesis. BUT they are dopamine antagonists. I was not aware that I was in benzodiazepine withdrawal when I got the Reglan until months later. It was all in hindsite. I got it IV and it felt like INSTANT brain damage. I'm sure the Versed did not help either, but you cannot have these medications: Compazine, Reglan, Phenergan never again! They can result in permanent movement disorders too. Put them on an allergy bracelet.

 

I'm at month 18 and much better, but it was bad for months and my system is STILL sensitive to everything. I don't take any meds at all & am terrified to. I just had a setback from the flu shot. It's taking weeks for that to resolve.

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Hey friends,

 

I'm really grateful to have found this thread for some mutual support. I'm a bit shy of two years out from c/t with benzos. In the beginning I made a lot of mistakes in my journey because I hadn't found this website yet or the Ashton manual. After I c/t'd Xanax I kindled a few times during acute when my symptoms would get too unbearable. I went to the doctor because I was sick so much and of course they couldn't figure out what was wrong and they gave me antibiotics. Then on top of all that, I went out drinking socially with friends having no idea that all of this stuff was only hurting me rather than helping me.

 

Fast forward about 2 years later to now and I was feeling so much better. I was feeling about 90% healed and really getting my life back on track. This past month I had jaw surgery and I had a mild infection in one of the incisions in my mouth, so I was prescribed Amoxicillin. I thought I would be OK because it wasn't a fluoroquinolone antibiotic, but it absolutely destroyed me and threw me into a wave from hell. Now I'm having horrible brain zaps, hives appearing all over my body, and the pressure in my right eye is shooting up so much that I have to take prescription eye drops to keep from my optic nerve getting damaged. And of course the tinnitus/anxiety has made a comeback too.

 

Anyway, I'm pretty much beyond discouraged right now. I have no idea if this is a setback or just a particularly bad wave, but either way I feel like I want to just give up right now. I worked so hard to get out of this mess, and it's such a terrible feeling to be back in this place all over again. It really feels like my CNS will never fully recover from being over-sensitized. Sending healing vibes to all of you.

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  • 3 weeks later...

Hi Ali, sorry it took someone (me) so long to respond to your post.  I think a few of us have moved over to chatting on FB I know it's better for me and we also have a little setback FB group.  Send me a message if you want my FB info.

 

Anyhoo, sorry that you are going through this! I am now 5 months into setback from antibiotic and it has been really intense to say the least.  Some of the worst symptoms that I had in the first two months have gone and I've seen improvements but there is always a rotation of new symptoms coming and going.  Right now I have flushing and burning and prickling skin on hands, arms and face it really sucks.  How are you doing?

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Hi Ali, sorry it took someone (me) so long to respond to your post.  I think a few of us have moved over to chatting on FB I know it's better for me and we also have a little setback FB group.  Send me a message if you want my FB info.

 

Anyhoo, sorry that you are going through this! I am now 5 months into setback from antibiotic and it has been really intense to say the least.  Some of the worst symptoms that I had in the first two months have gone and I've seen improvements but there is always a rotation of new symptoms coming and going.  Right now I have flushing and burning and prickling skin on hands, arms and face it really sucks.  How are you doing?

 

You are not permitted to post your contact details to the BenzoBuddies forum. Nor should you solicit the contact details of other members. Links to, or requests to join, Facebook or any other social networking websites which might potentially identify members' true identities are not allowed.

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  • 3 weeks later...

Setbacks & reactions to antibiotics and steroids seem to have become very common around here. I’m going to post a link to the Neurotoxic effects different classes of antibiotics may have on the CNS. I think it’s good info to have and helped me understand why I had such a wild reaction to amoxicillin.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175508/

 

Wishing everyone continued healing in this New Year  :smitten:

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Thanks for sharing this link. I wish I could say I'm doing better, but I'm still trapped in this horrible wave/setback. My hair has been falling out the most since I was in acute and I'm at the point right now where I can't even work and might have to go on a leave from my job because my symptoms are so bad. I was in bed for half of the day today. So terrified that this is a setback that will erase the past 2 years of all the work I've been doing trying to heal from this never ending nightmare.
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Hi group. I'd like to ask about magnetotherapy. I had a session for my shoulder today and my sxs are ten times worse. I wonder if there's a connection. I have another session tomorrow and I'm wondering if I should pass on that part of the treatment. I'm very scared of getting worse.
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