Medication Induced Setback Support

[[...]]

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 

 

Excellent article. I had seen this back when I had my ordeal from the Amoxillin and Augment.. 14 days total. I was doing fine until a week after getting off. It was like the K stopped working and it did.

Had to up dose to stabilize and remain functional. Also, I changed to Brand, thinking that the generic was the problem. It wasn't. The receptors were.

Anyway, I Hope and Pray that this will be better and a Healing year for all.

[[...]]

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 

 

Excellent article. I had seen this back when I had my ordeal from the Amoxillin and Augment.. 14 days total. I was doing fine until a week after getting off. It was like the K stopped working and it did.

Had to up dose to stabilize and remain functional. Also, I changed to Brand, thinking that the generic was the problem. It wasn't. The receptors were.

Anyway, I Hope and Pray that this will be better and a Healing year for all.

[[...]]

Yup.  I think this is what is happening to me right now.  About 12 days ago had a migraine.  Took maxalt, tylenol 3 and stopped using flonase.  It had to be one of these as I was doing so well.  The next day went into severe anxiety, a constant feeling of suffocation and severe depression.  I cant seem to get out of it.  I am losing my mind.

[[al...]]

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 

 

Ugh. I have to say, the information in this link is both illuminating and terrifying. The study mentions how Amoxicillin can cause Focal aware seizures, which are the exact symptoms I've been experiencing up to 3x daily ever since this horrific setback. This is so depressing. I feel like I'm never going to heal now and my brain is fried.

[[Wo...]]

In all of withdrawal including taper I always had periods of harder symptoms and then breaks where things would ease up considerably and I’d get a nice break. During all of this, however, my baseline was always high enough (except for a couple periods of more acute that lasted a couple months - but even then I could walk and drive a bit) to work, drive, walk for miles and sometimes do Pilates and dance when I was feeling good, shop, have family time, have romantic time with my partner and generally have some quality of life. And now, since the antibiotic setback I am in one long wave with no breaks with limited physical ability. I am 29 months off the drug and 6.5 months post setback. I can’t believe how symptomatic I am. I don’t even know how I am getting through the days with this severity. I’ve seen improvements in some areas but nothing near to who I was, where I was before this. I don’t understand. I’ve seen so many doctors and gotten so many tests. I often wonder if this will ever end. Or how long this will take. Or will I be stuck like this. Will i make it out alive. I don’t understand what’s happened to me. Just needed to vent a little. Praying for windows for us all. ❤️❤️❤️

[Guest [pa...]]

I think the Fluorqunilones act as inverse agonists at the BZD site. Since inverse agonists tend to sensitize the CNS to their effects, as opposed to Agonists which desensitize the GABAA receptors to their effects over time, repeated exposure to courses of these antibiotics can inversely affect a very few amount of people after their 2no or 3rd round. Of course some are so sensitive they get Floxed with their first exposure.

[Guest [Be...]]

Yup.  I think this is what is happening to me right now.  About 12 days ago had a migraine.  Took maxalt, tylenol 3 and stopped using flonase.  It had to be one of these as I was doing so well.  The next day went into severe anxiety, a constant feeling of suffocation and severe depression.  I cant seem to get out of it.  I am losing my mind.

 

 

I can’t use Flonase. Very horrible experience with that. It was an instant reaction.

[[Kl...]]

I believe that so many of the setbacks that we all have endured are caused by some kind of negative allosteric modular, definitely including the penicillin drugs and the fluroquinolone drugs that have had so much publicity.  But there is a list of these chemicals that i believe can effect us in our every day life that we don't even investigate.  Water for example; if it has chlorine in it, it may disable our  GABA neurons.  So says wikipedia anyway.

 

I have wanted to start a questionnaire asking people to look back at their medical records to investigate possibly taking an antibiotic with a benzo  and not even understanding that that may have caused a withdrawal syndrome.  This is what happened with me.  I was an every day, medically prescribed 2 mg a day clonazepam user when my first acute incident occurred.  I was diagnosed with spinal meningitis and now doctors are saying I didn't have that. It was a full blown attack caused by two incompatible drugs-amoxicillin and clonazepam.  Nobody knew then and I continued to take clonazepam  I suffered horribly.  It took me months to be able to get back to life as usual.  I didn't understand that if I had increased my dose of C, that I would have been ok and that was the only way to enhance my GABA neurons to pull out of withdrawal mode.

 

I'm putting out a link and would like to know if anyone else recognizes any other chemical on this list that may have at one time affected anyone.

I think it would be good to have a main topic on this site addressing drug contraindications with benzos, all of them.  I have finally found safe drugs for my dental procedures, Clindemycin an antibiotic and Articaine for a numbing agent...it works for topical surgeries as well. 

 

Here's the link!!

https://en.wikipedia.org/wiki/Category:GABAA_receptor_negative_allosteric_modulators

 

Any thoughts?  Thank you!!

 

Klonkar

 

 

 

 

 

[[Wa...]]

Just found this thread and wondering how everyone is doing? In all honesty, I was hopeful when I found it because I thought I'd be reading how people pulled out of it but it seems like everyone is just suffering endlessly.

 

I was 25 months off and finally functional. I started socializing again, went back to church, and was starting a new job that I had worked really hard for. I could go to stores, spend time with my children, and the horrors of withdraw were fading.

 

Then I got a UTI 5 days before my new job started. I was panicking and tried to do everything I could to NOT get a script for an antibiotic but I started peeing blood and the pain got so bad that they put me on Macrobid. First it was a dose of Keflex but that caused an instant reaction and then I've been taking the macrobid which just made me nauseated at first but now I'm sicker than I was in acute and all the mental symptoms are coming back.

 

I've been on it for about 6 days and tapered my last two pills. I am back in bed like I was 2 years ago. I had to quit my job. I am a single mom. I am terrified that I am back to square one. I have read that people start feeling better once the drug is out of their system but it seems like more damage is done now that I am reading all of these posts.

 

I am so sick and terrified. I can't go through all of this again.

[[Ka...]]

Hi Warrior24, I'm so sorry you 've had an abx setback, and I am glad you found this group. As you can see there isn't a whole lot of activity on here, that's because most of the people on here have already recovered from this scary setback and moved on, I'm one of the few that are still in it, it's been 11 long months for me and I'm slowly recovering too. I had my setback right around the 2 year mark too, strangely that seems to be a common time when our systems are the most sensitized I guess(?) to have setbacks. But please do not be discouraged by my example. There were 4 of us who had this setback around the same time last year and the other three ladies have all mainly recovered with some very minor sx left, I'm the only ' lucky' one that's still here. I'm improving too, just very slowly, I'd say I'm about 50% recovered. But with these setbacks things are really unpredictable, the first couple of months are the most scary period, you can even find yourself getting worse in the beginning, at least this is what happened to me, but then once you start improving, things start improving pretty quickly. This is like a ' mini' version of withdrawal, you get all the same or very similar sx and things develop a lot faster, and then once you recover, you also find yourself recovered pretty quickly. I'm not there yet, but this is what i've read and seen happen to other people who had setbacks and are now healed. If you need any more info on this, feel free to pm me, I will be glad to answer any of your questions. And it is very very discouraging to have this kind of setback, when you have already been suffering for so long. I was so bad that as much as I hated the idea I was seriously considering going back on benzos at the very beginning of this and I was having lots of suicidal thoughts and couldn't sleep at all for the whole first month, so it was bad. Thank God my pcp that I have now and who knows my history flat out refused to prescribe them for me but put me on trazodone instead, otherwise I would have been back on benzos now. I did take trazodone for a couple of months and it did help with sleep issues a little, and then I had to titrate it down over the next two months, even though I was on a very little dose of it. Most people recover from these setbacks within 6-8 months, on a rare occasion they can last longer, but you do still start to see much improvement around that 8 months mark. Oh one other thing that has stalled my progress with this recovery is that I ended up getting covid on top of this setback back in November. That was a truly scary time, withdrawal, setback, covid, I really didn't think I was going to make it. The good news I'm still here)) Oh after having a setback you learn not to use any medications for anything, because of course our systems are so sensitized right now, we need to be extra careful, so I've been pretty successfully experimenting with Colloidal silver, garlic and ozone therapy to take care of any health issues. I even nebulized with hydrogen peroxide and lugol's iodine when I had covid. You  tend to become creative when you realize that no medication is working for you any more. Please pm me any time, and feel better soon, sending healing thoughts)

[[Wa...]]

Hi Warrior24, I'm so sorry you 've had an abx setback, and I am glad you found this group. As you can see there isn't a whole lot of activity on here, that's because most of the people on here have already recovered from this scary setback and moved on, I'm one of the few that are still in it, it's been 11 long months for me and I'm slowly recovering too. I had my setback right around the 2 year mark too, strangely that seems to be a common time when our systems are the most sensitized I guess(?) to have setbacks. But please do not be discouraged by my example. There were 4 of us who had this setback around the same time last year and the other three ladies have all mainly recovered with some very minor sx left, I'm the only ' lucky' one that's still here. I'm improving too, just very slowly, I'd say I'm about 50% recovered. But with these setbacks things are really unpredictable, the first couple of months are the most scary period, you can even find yourself getting worse in the beginning, at least this is what happened to me, but then once you start improving, things start improving pretty quickly. This is like a ' mini' version of withdrawal, you get all the same or very similar sx and things develop a lot faster, and then once you recover, you also find yourself recovered pretty quickly. I'm not there yet, but this is what i've read and seen happen to other people who had setbacks and are now healed. If you need any more info on this, feel free to pm me, I will be glad to answer any of your questions. And it is very very discouraging to have this kind of setback, when you have already been suffering for so long. I was so bad that as much as I hated the idea I was seriously considering going back on benzos at the very beginning of this and I was having lots of suicidal thoughts and couldn't sleep at all for the whole first month, so it was bad. Thank God my pcp that I have now and who knows my history flat out refused to prescribe them for me but put me on trazodone instead, otherwise I would have been back on benzos now. I did take trazodone for a couple of months and it did help with sleep issues a little, and then I had to titrate it down over the next two months, even though I was on a very little dose of it. Most people recover from these setbacks within 6-8 months, on a rare occasion they can last longer, but you do still start to see much improvement around that 8 months mark. Oh one other thing that has stalled my progress with this recovery is that I ended up getting covid on top of this setback back in November. That was a truly scary time, withdrawal, setback, covid, I really didn't think I was going to make it. The good news I'm still here)) Oh after having a setback you learn not to use any medications for anything, because of course our systems are so sensitized right now, we need to be extra careful, so I've been pretty successfully experimenting with Colloidal silver, garlic and ozone therapy to take care of any health issues. I even nebulized with hydrogen peroxide and lugol's iodine when I had covid. You  tend to become creative when you realize that no medication is working for you any more. Please pm me any time, and feel better soon, sending healing thoughts)

 

Kathy, thank you very much for your post and for being so encouraging. I thought things were bad when I was ON the Macrobid but all hell broke loose a day or so after stopping. I never in my life imagined that I would feel acute symptoms again and what happened to me was so much worse!  I tried to go to sleep one night and woke up gasping for air within about 15 minutes and was in the most panicked, terrified state. I screamed for my girls and was screaming in my sheets, hiding behind my curtains and wouldn't let anyone come close to me. I developed severe akathisia which I never even had before and my muscles seized up. I couldn't catch my breath, I was dry-heaving, sweating, and dizzy. I was running around my room like I was completely insane. I was crawling on my floor and screaming and crying. My girls had to call my parents who came and stayed with me til 4am when I briefly "slept" for an hour and then the symptoms all started again. They took me to the ER but of course all labs were normal. I have been ill ever since and back to my acute symptoms from two years ago. This whole thing has retraumatized me and this was just two days ago!!

 

I took a dumb antibiotic for a UTI that I did everything to prevent. I had to quit my new job. I'm devastated and terrified. I have really bad luck with my health so now I am petrified of needing a drug or another antibiotic.

 

I will PM you when things calm down a bit. If they calm down. I honestly don't know if I can survive this. I can't do this all over again.

 

Thank you again for you kind words and support :smitten:

[[Mi...]]

Hi Warrior24, I'm so sorry you 've had an abx setback, and I am glad you found this group. As you can see there isn't a whole lot of activity on here, that's because most of the people on here have already recovered from this scary setback and moved on, I'm one of the few that are still in it, it's been 11 long months for me and I'm slowly recovering too. I had my setback right around the 2 year mark too, strangely that seems to be a common time when our systems are the most sensitized I guess(?) to have setbacks. But please do not be discouraged by my example. There were 4 of us who had this setback around the same time last year and the other three ladies have all mainly recovered with some very minor sx left, I'm the only ' lucky' one that's still here. I'm improving too, just very slowly, I'd say I'm about 50% recovered. But with these setbacks things are really unpredictable, the first couple of months are the most scary period, you can even find yourself getting worse in the beginning, at least this is what happened to me, but then once you start improving, things start improving pretty quickly. This is like a ' mini' version of withdrawal, you get all the same or very similar sx and things develop a lot faster, and then once you recover, you also find yourself recovered pretty quickly. I'm not there yet, but this is what i've read and seen happen to other people who had setbacks and are now healed. If you need any more info on this, feel free to pm me, I will be glad to answer any of your questions. And it is very very discouraging to have this kind of setback, when you have already been suffering for so long. I was so bad that as much as I hated the idea I was seriously considering going back on benzos at the very beginning of this and I was having lots of suicidal thoughts and couldn't sleep at all for the whole first month, so it was bad. Thank God my pcp that I have now and who knows my history flat out refused to prescribe them for me but put me on trazodone instead, otherwise I would have been back on benzos now. I did take trazodone for a couple of months and it did help with sleep issues a little, and then I had to titrate it down over the next two months, even though I was on a very little dose of it. Most people recover from these setbacks within 6-8 months, on a rare occasion they can last longer, but you do still start to see much improvement around that 8 months mark. Oh one other thing that has stalled my progress with this recovery is that I ended up getting covid on top of this setback back in November. That was a truly scary time, withdrawal, setback, covid, I really didn't think I was going to make it. The good news I'm still here)) Oh after having a setback you learn not to use any medications for anything, because of course our systems are so sensitized right now, we need to be extra careful, so I've been pretty successfully experimenting with Colloidal silver, garlic and ozone therapy to take care of any health issues. I even nebulized with hydrogen peroxide and lugol's iodine when I had covid. You  tend to become creative when you realize that no medication is working for you any more. Please pm me any time, and feel better soon, sending healing thoughts)

 

Kathy,

 

For the people you see that had this before do they EVER get over their med sensitivities? I mean how do they have surgery? Take vaccines? Take meds?

 

I had the regular flu shot in October 2020. I was almost healed and it gave me a serious 4 month setback. I went from buying new tennis shoes, ready to start working out to having to hold onto my husband to walk for months, having an ordeal with tachycardia (which I never had before), and heart palpitations. Other symptoms returned too during this setback like doom & vertigo. I was driving pre flu shot set back. I still don't drive now. I tried a couple times. I'm almost there, but still not ready. Btw, I had the flu shot prebenzos with no issues.

 

I never would have dreamed that I would be sensitive. I thought I was healed enough not to be. Boy, was I wrong.

 

So, I most likely will not be getting the Covid vaccine. I'm counting on herd immunity and for some of these drugs that are still in trial right now for treatment of Covid if one was to get it. Molnupiravir is one of them. I know I will be sensitive to such a drug too, but at least I could get it, once it's approved IF I were to get Covid. Of course there's a chance to not get Covid ever. That's the whole point.

 

It's very hard for me to talk about the Covid vaccine on this forum. I've been told I'm "just unlucky" with my sensitivity.

 

The push for everyone to get the vaccine can be extreme. I've read where people have said their doctor said for people who have allergies to ingredients in the vaccine to get the Covid vaccine anyway and to just bring their epi pen along or get it and stay longer at the hospital in case they go into analphylactic shock. I read this on this forum too in one of the Covid topics. I think that's a bit crazy.  Of course I'm talking about people with allergies to ingredients in the vaccine. I know an Epi pen will not help us in withdrawal who have med sensitivities. I'm just trying to make the point of the extreme that everyone is urged to get this vaccine. I've read on here that "we're used to setbacks from meds so just get the vaccine anyway". All of this seems crazy to me since I'm so med sensitive. I've been treated somewhat like an anti vaxxer on here which I am not. I'm just terrified of another setback. I understand the very serious importance of "getting shots in arms" to get through this pandemic. I understand that. I want everyone who can to get the vaccine, but I cannot.

 

Of course it's hard for me to ask you since you had Covid and you know how horrible it can be. My husband and I know a person who "got it in the lungs", who lived, went back to work but are still fatigued and have to end the day early. I've read about folks who have heart & lung issues due to Covid. Of course it can be fatal. I'm aware of the severity.

 

My husband and I work from home. We have no kids. We see no one. I have not been in a restaurant for a year. We take it so very serious because of me. We have total control with this. We "have our foot on the gas pedal" protecting ourselves and seeing this through. He'll get the vaccine when it's his turn.

 

I just cannot bear the thought of another setback. What I'm reading here in these last few posts on this board: "Crawling on the floor. Screaming and hiding in curtains. Akathasia. Dizziness, severe insomnia"  etc etc from a medication set back (I've had akathasia in withdrawal)

 

I mean how much am I willing to sacrifice because I MIGHT get Covid?

 

Warrior- my prayers are with you. I had akathasia in acute withdrawal. I paced in the living room for 2 days. It was rough, but I got through. Scream into a pillow. Rock in place. Cry. Cry and vent.

 

So who here on the "Medication Setback" board is getting the Covid vaccine ?

[[Wa...]]

Hi Warrior24, I'm so sorry you 've had an abx setback, and I am glad you found this group. As you can see there isn't a whole lot of activity on here, that's because most of the people on here have already recovered from this scary setback and moved on, I'm one of the few that are still in it, it's been 11 long months for me and I'm slowly recovering too. I had my setback right around the 2 year mark too, strangely that seems to be a common time when our systems are the most sensitized I guess(?) to have setbacks. But please do not be discouraged by my example. There were 4 of us who had this setback around the same time last year and the other three ladies have all mainly recovered with some very minor sx left, I'm the only ' lucky' one that's still here. I'm improving too, just very slowly, I'd say I'm about 50% recovered. But with these setbacks things are really unpredictable, the first couple of months are the most scary period, you can even find yourself getting worse in the beginning, at least this is what happened to me, but then once you start improving, things start improving pretty quickly. This is like a ' mini' version of withdrawal, you get all the same or very similar sx and things develop a lot faster, and then once you recover, you also find yourself recovered pretty quickly. I'm not there yet, but this is what i've read and seen happen to other people who had setbacks and are now healed. If you need any more info on this, feel free to pm me, I will be glad to answer any of your questions. And it is very very discouraging to have this kind of setback, when you have already been suffering for so long. I was so bad that as much as I hated the idea I was seriously considering going back on benzos at the very beginning of this and I was having lots of suicidal thoughts and couldn't sleep at all for the whole first month, so it was bad. Thank God my pcp that I have now and who knows my history flat out refused to prescribe them for me but put me on trazodone instead, otherwise I would have been back on benzos now. I did take trazodone for a couple of months and it did help with sleep issues a little, and then I had to titrate it down over the next two months, even though I was on a very little dose of it. Most people recover from these setbacks within 6-8 months, on a rare occasion they can last longer, but you do still start to see much improvement around that 8 months mark. Oh one other thing that has stalled my progress with this recovery is that I ended up getting covid on top of this setback back in November. That was a truly scary time, withdrawal, setback, covid, I really didn't think I was going to make it. The good news I'm still here)) Oh after having a setback you learn not to use any medications for anything, because of course our systems are so sensitized right now, we need to be extra careful, so I've been pretty successfully experimenting with Colloidal silver, garlic and ozone therapy to take care of any health issues. I even nebulized with hydrogen peroxide and lugol's iodine when I had covid. You  tend to become creative when you realize that no medication is working for you any more. Please pm me any time, and feel better soon, sending healing thoughts)

 

Kathy,

 

For the people you see that had this before do they EVER get over their med sensitivities? I mean how do they have surgery? Take vaccines? Take meds?

 

I had the regular flu shot in October 2020. I was almost healed and it gave me a serious 4 month setback. I went from buying new tennis shoes, ready to start working out to having to hold onto my husband to walk for months, having an ordeal with tachycardia (which I never had before), and heart palpitations. Other symptoms returned too during this setback like doom & vertigo. I was driving pre flu shot set back. I still don't drive now. I tried a couple times. I'm almost there, but still not ready. Btw, I had the flu shot prebenzos with no issues.

 

I never would have dreamed that I would be sensitive. I thought I was healed enough not to be. Boy, was I wrong.

 

So, I most likely will not be getting the Covid vaccine. I'm counting on herd immunity and for some of these drugs that are still in trial right now for treatment of Covid if one was to get it. Molnupiravir is one of them. I know I will be sensitive to such a drug too, but at least I could get it, once it's approved IF I were to get Covid. Of course there's a chance to not get Covid ever. That's the whole point.

 

It's very hard for me to talk about the Covid vaccine on this forum. I've been told I'm "just unlucky" with my sensitivity.

 

The push for everyone to get the vaccine can be extreme. I've read where people have said their doctor said for people who have allergies to ingredients in the vaccine to get the Covid vaccine anyway and to just bring their epi pen along or get it and stay longer at the hospital in case they go into analphylactic shock. I read this on this forum too in one of the Covid topics. I think that's a bit crazy.  Of course I'm talking about people with allergies to ingredients in the vaccine. I know an Epi pen will not help us in withdrawal who have med sensitivities. I'm just trying to make the point of the extreme that everyone is urged to get this vaccine. I've read on here that "we're used to setbacks from meds so just get the vaccine anyway". All of this seems crazy to me since I'm so med sensitive. I've been treated somewhat like an anti vaxxer on here which I am not. I'm just terrified of another setback. I understand the very serious importance of "getting shots in arms" to get through this pandemic. I understand that. I want everyone who can to get the vaccine, but I cannot.

 

Of course it's hard for me to ask you since you had Covid and you know how horrible it can be. My husband and I know a person who "got it in the lungs", who lived, went back to work but are still fatigued and have to end the day early. I've read about folks who have heart & lung issues due to Covid. Of course it can be fatal. I'm aware of the severity.

 

My husband and I work from home. We have no kids. We see no one. I have not been in a restaurant for a year. We take it so very serious because of me. We have total control with this. We "have our foot on the gas pedal" protecting ourselves and seeing this through. He'll get the vaccine when it's his turn.

 

I just cannot bear the thought of another setback. What I'm reading here in these last few posts on this board: "Crawling on the floor. Screaming and hiding in curtains. Akathasia. Dizziness, severe insomnia"  etc etc from a medication set back (I've had akathasia in withdrawal)

 

I mean how much am I willing to sacrifice because I MIGHT get Covid?

 

Warrior- my prayers are with you. I had akathasia in acute withdrawal. I paced in the living room for 2 days. It was rough, but I got through. Scream into a pillow. Rock in place. Cry. Cry and vent.

 

So who here on the "Medication Setback" board is getting the Covid vaccine ?

 

Miss Fortitude,

 

This is my question too. How in the world do we ever live out in the real world again??? What if I need another antibiotic or surgery or some other med? Do I choose between getting a worse-than-acute setback that unhinges my entire life again or getting sick/dying from whatever health problem. It's an impossible choice.

 

I feel like I'm going to be living in fear every day.

[[Ka...]]

Warrior, Miss Fortitude, I can so relate to your fears and concerns, and those are all my questions too.. and yea I do not feel very welcome with talking about my fears about this vaccine on this forum either, everybody who has made up their minds and is either healed or on their way to healing does not seem to understand our concerns,  as we are lagging behind, sensitive to everything, scared to death of another setback.. So I won't dwell on that subject too much, but you are welcome to pm me if you want. Since I had covid, and I had ozone therapy with UBVI during it, which after just one treatment turned my covid around, I'm now a big believer in  natural remedies.. We have been burnt by medications, so we now have to learn to navigate a new world, world of natural remedies and alternative medicine. My go to site has been earth clinic, and I love a natural health group on FB, that's called Natural health library, it's wonderful, has so many resources and answers to all kinds of questions you might have. That's what I've been doing for the last 10 months, I go there to find answers to my multiple ailments.. I've tried so many different treatments too, and the only one of them that has caused a very minor setback was oregano oil, it lasted one night, so I just stopped it, everything else I tolerated just fine: colloidal silver, lots of garlic ( during covid and flu that I had last spring, I'm talking like two cloves with each meal), nebulizing with lugol's iodine and hydrogen peroxide, IV ozone therapy with ubvi, vitamin IV infusions ( it's high doses of vitamin C, zinc and glutathione, i did also add vitamin B complex and magnesium when I had covid, because I was more concerned about covid than another setback at the time, but they did rev me up quite a bit, so after that one infusion I would only do vitamin C, zinc and glutathione now) and a bunch of other natural health things that I've tried. It's really crazy, i've never been an anti-vaxxer, anti-medicine or anything like that, I used to be a nurse in my pre-benzo life, but since medications have almost killed me, and I've literally seen people now have setbacks from the most neutral medcs like aspirin, or tylenol I have to learn how to take care of things without meds. And yes, garlic for example, if you have a sensitive stomack and you have too much on an empty stomack, you can cause yourself GI issues, so you have to be careful, but it will never cause you a setback. Same with ozone therapy, at least I had a good experience with it, as sensitive as I am right now. So I'm not against vaccines, I just realize I can't have or tolerate one right now, maybe later, maybe a year from now, when I'm fully stable and feel recovered.. but even then.. if I have my natural remedies, I will probably be sticking with them for a while. I know that ozone therapy for example can be used as a preventative and a great immune booster, so maybe I will resort to that to boost my immune system. And to answer your question Miss Fortitude, I know that people like Baylissa who had severe withdrawals and setbacks too, say that you just have to give your body that time to fully heal before you can start to live a normal life again, with caffeine, medications, surgeries, etc.. of course if it's a life or death situation, you go out there and have a surgery, but otherwise, you live in that bubble until you allow yourself to heal fully. I went back to work a year ago, as I was starting to feel better, and I regret that, I needed money, and I actually ended up catching flu there at work, had I stayed at home and taken extra care of myself I would probably be fully healed by now. So yes, let's be all extra careful, do everything possible to heal ourselves, and wait out till our systems are fully healed because once you've had that setback you are extra sensitive.

Warrior, I'm so sorry you are right in the middle of acute there. I'm gonna send lots of healing thoughts and prayers your way, just hang very tight right now, know that a month or two from now you'll start feeling better, but this time is just hard, you have to get through it, it's good that you have your family for support, and it's a good sign I think that you can sleep even an hour in the first few days after the setback, I wasn't able to sleep even a minute for the first 10 days, and then another week of like 20 minutes of sleep a day, it was awful and very scary. You're sleeping a little bit already, that has to be a good sign, I'm praying for you, and hoping this is short-lived for you.

Ugh, this experience is tough, very traumatizing, we are here to support you if you need help.

[[Mi...]]

Warrior,

 

Don't do that. Don't live in fear everyday.

 

My husband & I were just talking about this very thing today. I'm not going to be afraid of the "what ifs". Does it bother me? Yes, but I don't want it to over run my life. Stay healthy. Do everything you can to stay healthy. I know we still need meds from time to time. Stay the course. Put as much time as you can into healing and away from meds, without putting yourself in danger. I know you tried to not take meds for this UTI.

 

You will get through this setback from the macrobid. You will.

I was miserable after the flu shot. I woke up at 3am, nauseated, weak, needing help to even go to the restroom. My vertigo that was gone for 9 months came back full force. I bought a cane thinking I would be needing it. ........ Now I'm walking 5 miles everyday. I got through this. You will too.

 

As for the akasthasia I got through it too. I couldn't even be a passenger in a car. My husband would stop at a traffic light and I'd scream because of feeling closed in a car waiting at a traffic light. This was during acute WD for me. The akathasia did not return with my flu shot.

 

It took a couple days for me to stop pacing and be able to just sit with myself. It slowly diminished over time. It took a bit longer to be able to ride in a car again. It took awhile to be able to sit and watch TV. I distracted during it. I make greeting cards. I made an entire rack for a near by coffee shop during my time with akathasia. That symptom is long, long, long, gone.

 

How are you doing ?

 

Miss Fortitude

[[Wa...]]

Thank you both for your words of encouragement in support.

I just know I can't do this for months ahead of me. I'm barely lasting a week right now.

There are  no patterns to anything. One night I slept pretty hard and woke up feeling worse.

The other nights, I am starving for air, having psychotic bits of "sleep," feeling like I am going to pass out, and so sick I feel like I am dying.

All my acute mental symptoms have come back like heavy Dp/Dr and suicidal thoughts.

 

I feel completely defeated and without hope. I was bedridden for nine months and have slowly crawled out of this brutal and unimaginable hell and made it to almost 26 months.

 

Just weeks ago, I was waking up alert, I felt motivated and happy and could make plans for the day. I was putting on makeup and doing my hair and had just started driving and being outside without fear. I was able to run errands and have conversations with people and not feel drained and over-stimulated. I started having lunch with friends again. I accepted my dream job. I started feeling like a real human being again and had hope for the very first time that I was going to make it and be okay. I told myself that by the three year mark, I would be doing stable and good. I have never felt back to normal but I felt so much better.

 

And now it's just gone. It's all gone. It's like the last 26 months haven't even happened. I could handle a "reaction" from the antibiotic. I could handle a setback but this? I can't do this. It's worse than acute. One of the things I told myself through this whole thing and something I found peace in was that "the hardest part was over." I'd never have to go through that acute stuff again. I was finally coming to terms with the trauma it caused and could start to talk a little bit about it to my therapist.

 

I apologize for being so negative. In all my time on here, I never came and posted doom and gloom things. I tried to stay positive, offer hope, and hold on for better days. But I just don't have it in me to do this again. I didn't even think it was possible this would happen again. I am back being tortured and terrified to try to sleep at night. I am a single mom and have no way to support my family. My poor kids have witnessed this horror and have been by my side and I won't put them through this again. Three of them are leaving for college next year and it was my dream to be well enough to drive the 9 hours and drop them off.

 

If someone said, "hold on and things will drastically improve in a month," I could dig deep and do it. But it's just like benzo recovery. No one can tell you that. No one can look into the crystal ball and tell you when things will get better or how or when.

 

The other thing is that I have always had random health problems. I've been having surgeries since I was 22 and I'm 47. I get random diseases and illnesses and I always took excellent care of my health. I don't see this changing as I get older and especially since this dumb drug has changed my health for the worse. So I do live in fear of these things and meds I might need.

 

Thank you so much Kathy and MF, for being in this with me. I feel so completely terrified and alone. I've been here before and never thought I'd ever be here again. Hugs to you both 

[[Mi...]]

Thank you both for your words of encouragement in support.

I just know I can't do this for months ahead of me. I'm barely lasting a week right now.

There are  no patterns to anything. One night I slept pretty hard and woke up feeling worse.

The other nights, I am starving for air, having psychotic bits of "sleep," feeling like I am going to pass out, and so sick I feel like I am dying.

All my acute mental symptoms have come back like heavy Dp/Dr and suicidal thoughts.

 

I feel completely defeated and without hope. I was bedridden for nine months and have slowly crawled out of this brutal and unimaginable hell and made it to almost 26 months.

 

Just weeks ago, I was waking up alert, I felt motivated and happy and could make plans for the day. I was putting on makeup and doing my hair and had just started driving and being outside without fear. I was able to run errands and have conversations with people and not feel drained and over-stimulated. I started having lunch with friends again. I accepted my dream job. I started feeling like a real human being again and had hope for the very first time that I was going to make it and be okay. I told myself that by the three year mark, I would be doing stable and good. I have never felt back to normal but I felt so much better.

 

And now it's just gone. It's all gone. It's like the last 26 months haven't even happened. I could handle a "reaction" from the antibiotic. I could handle a setback but this? I can't do this. It's worse than acute. One of the things I told myself through this whole thing and something I found peace in was that "the hardest part was over." I'd never have to go through that acute stuff again. I was finally coming to terms with the trauma it caused and could start to talk a little bit about it to my therapist.

 

I apologize for being so negative. In all my time on here, I never came and posted doom and gloom things. I tried to stay positive, offer hope, and hold on for better days. But I just don't have it in me to do this again. I didn't even think it was possible this would happen again. I am back being tortured and terrified to try to sleep at night. I am a single mom and have no way to support my family. My poor kids have witnessed this horror and have been by my side and I won't put them through this again. Three of them are leaving for college next year and it was my dream to be well enough to drive the 9 hours and drop them off.

 

If someone said, "hold on and things will drastically improve in a month," I could dig deep and do it. But it's just like benzo recovery. No one can tell you that. No one can look into the crystal ball and tell you when things will get better or how or when.

 

The other thing is that I have always had random health problems. I've been having surgeries since I was 22 and I'm 47. I get random diseases and illnesses and I always took excellent care of my health. I don't see this changing as I get older and especially since this dumb drug has changed my health for the worse. So I do live in fear of these things and meds I might need.

 

Thank you so much Kathy and MF, for being in this with me. I feel so completely terrified and alone. I've been here before and never thought I'd ever be here again. Hugs to you both 

 

Warrior,

 

I'm so sorry you're going through this.

 

When I had my flu shot set back I was having those same feelings of despair. I was thinking those same thoughts that you are. I was almost passing out. I was talking about getting a Will together.

 

The thing is you take it one day at a time. I know sleep is bad. I was sleeping with a night light on. Or partially sleeping with the light on. I hated going to bed. This was 4 months ago. I wasn't acutely sick the entire 4 months. It took some days to see any improvement. This happened mid October. By early November I started to get some relief. Then slowly I got better. In the last 2 months I've healed to a better place than I was pre flu shot.

 

Have you ever talked to Bsylissa Frederick? This may be a time to do so. At least join her website and listen to her webinars.

[[Mi...]]

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 here is from several months ago, but I just want to warn you ... it was the Compazine that gave you your setback. It's a dopamine antagonist. So is Reglan (metochloraprimide) and Phenergan. DO NOT DO NOT TAKE THESE DRUGS EVER AGAIN. LIST THEM AS ALLERGIES. They are black labeled to cause tardive dyskinesia which is a permanent body movement disorder. They also cause akathasia. I know we can be sensitive to many things in withdrawal. Antibiotics, steroids, vitamins, supplements but definitely these 3 drugs.

[[Mi...]]

Warrior24,

 

How are you today?

 

I was wondering. Did you take any other psychotropic meds besides the benzos Xanax and Klonipin? You know like an antidepressant or even an antipsychotic?

 

I'm only asking because the person who started this "medication induced setback support" group had been on several types psychotropic meds like antidepressants and antipsychotics before they decided to taper off all of them. I too took Ativan and then Reglan in the ER one time. I was in tolerance from the Ativan (but I did not know it at the time) when I got Reglan. The Reglan really caused havoc and even though it's for gastric issues and migraines, Reglan is a dopamine antagonist. Antipsychotics are dopamine antagonists. So when I was in the ER that day with a migraine, I might as well of had an antipsychotic. It caused that much havoc. Well, it gave me aksthasia. It's like being polydrugged if you will.

 

I'm just asking because I'm trying to correlate if folks like us are more sensitive because of taking more than one category of a psychotropic med. Like an antidepressant, an antipsychotic or in my case the Reglan.

 

Also, during your thoracic surgery. I understand it was life saving, but did they happen to give you Reglan (metoclopramide) , compazine or Phenergan? These are all dopamine antagonists. Sometimes in surgery they do. Not always.  Sometimes if they're worried about vomiting.

 

Just wondering if there's any reason why some of us are more sensitive than others to other meds. Maybe there's no rhyme or reason. Idk.

[[Wa...]]

Warrior24,

 

How are you today?

 

I was wondering. Did you take any other psychotropic meds besides the benzos Xanax and Klonipin? You know like an antidepressant or even an antipsychotic?

 

I'm only asking because the person who started this "medication induced setback support" group had been on several types psychotropic meds like antidepressants and antipsychotics before they decided to taper off all of them. I too took Ativan and then Reglan in the ER one time. I was in tolerance from the Ativan (but I did not know it at the time) when I got Reglan. The Reglan really caused havoc and even though it's for gastric issues and migraines, Reglan is a dopamine antagonist. Antipsychotics are dopamine antagonists. So when I was in the ER that day with a migraine, I might as well of had an antipsychotic. It caused that much havoc. Well, it gave me aksthasia. It's like being polydrugged if you will.

 

I'm just asking because I'm trying to correlate if folks like us are more sensitive because of taking more than one category of a psychotropic med. Like an antidepressant, an antipsychotic or in my case the Reglan.

 

Also, during your thoracic surgery. I understand it was life saving, but did they happen to give you Reglan (metoclopramide) , compazine or Phenergan? These are all dopamine antagonists. Sometimes in surgery they do. Not always.  Sometimes if they're worried about vomiting.

 

Just wondering if there's any reason why some of us are more sensitive than others to other meds. Maybe there's no rhyme or reason. Idk.

 

Good morning. Thank you for checking in.

 

The only psych meds I've ever been on were for post-partum depression in 2003 after my twins were born. I took trazadone to sleep in 2013-2015 after my husband left us and tapered over two weeks with no issues at all.

 

When I first came down with my disease right before I was put on benzos, they tried putting me on Lexapro because my disease caused psychological problems but I was only on it for two weeks and it made me feel worse.

 

I think there might be something to what you said about the surgery. I actually didn't know about the drugs you mentioned above except Versed, which who knows, I may have been given at the time of surgery. I had always had phenergan in past surgeries because it was great for nausea and I usually requested it but I don't remember if I did for the thoracic surgery. All I know is I CT'd the Xanax the day of surgery because I didn't think I needed it anymore and was in the ICU for three days and when I woke up, I expected to feel so good as the surgery is an instant cure but I felt the sickest I'd ever been in my life. I ended up back in the ER twice that week and they had no clue what was wrong with me. It was so traumatizing. I had to fly home halfway across the country feeling like that.

 

I have been wondering this whole time why a drug I took for 5 months could continue to affect me 26 months off like this considering I took no other meds, was a runner, ate super healthy....etc.

 

Some symptoms are starting to break up. I slept last night which was a miracle. But many of my acute symptoms are back and I just don't know what to do.

 

Thank you for your support. It means so much right now. I'm glad to know that your baseline improved after your setback, if I read that right? 

 

I just feel like I ruined my life. Literally.

 

What if I was given all the drugs you mentioned? It was a major, major surgery. How will my body/brain ever be the same again.

[[Ka...]]

Warrior24, I think that's wonderful that you are seeing that progress already, some of the acute sx starting to leave and you are starting to get some sleep, it means your setback should be short-lived( keeping my fingers crossed here). It's very scary these setbacks, but oftentimes they are pretty short lived, I was just getting progressively worse for the first 2.5 months, so you making progress there already is a good sign. How are things with the UTI by the way, did the abx at least take care of that? are you taking anything to prevent any other infections? D-mannose, cranberry juice?  I hope you feel better very soon, just hang very tight right now.

Miss Fortitude, I wonder the same thing about what have we done differently to bring this on ourselves? I never was polydrugged though, I only took klonopin, well for 3.5 years, and it's been almost 3 years since I stopped. Granted I did a very fast taper, maybe that's what's contributing to all these awful sx. Who knows, but I also did have a huge amount of stress when this setback happened, 2 different abx prescribed for flu! that lasted 2.5 months, I think my system was just in great distress, that's why I had that setback, though some people on here have had a setback from just one pill of abx or steroid, go figure.. I think the greater the stress we are in the more prone we are to that setback, some people do get setbacks by the way from just overdoing exercise or just a huge amount of stress, not even taking any medications.. It's different for everyone. I wish us all strength right now, very glad you are feeling better Miss Fortitude, Warrior, sending you lots of healing energy))

[[Ne...]]

I never knew this page existed.  I always felt I was alone in my setbacks.  I have had 5 setbacks.  The last 3 have been the worst, hellish mental torture, severe body weakness, hypersensitive to smells and food, severe tension pain, severe anhedonia, & the most gut wrenching crying jags worse than grieving and constant anxiety and shakiness inside my body and the worst alone in the world feeling. I have never had any anxiety before in my life. Nor did I take any previous meds. Asked doctor for something to help me sleep. Big mistake trusting her. I should have researched. Lorazepam 80 something pills from start to taper. Last crumb June 2015.  I believe my 6 1/2 month setback was triggered by 5HTP and Vitamin D.  I believe my 11 month setback was triggered by Naturethroid - a so-called natural thyroid medication.  I am currently in a setback that started mid December 2020.  So three months into it.  It's the absolute worst like the previous two.  I believe the trigger was a nose cream for dry nose not even thinking it was an antibiotic and once again supplementing with Vitamin D - of course - the fear of COVID. I'm 100% healed in between setbacks if I don't count my weakness that has always remained. 

[[Wa...]]

I had an appointment yesterday with my naturopath who works with many people in benzo withdraw. She told me she has seen this setbacks in every single one of her patients and they get better. She told me the reason the recovery time is shorter than going all the way back to Square 1 (even though it feels like we are with acute symptoms returning) is that our bodies and brains have already created those neuropathways of healing. That was encouraging to hear.

 

I slept again last night which was another miracle and then the days are just acute, acute, acute. I'm only one week out from stopping though so I guess what can I expect at this point?

 

I feel like if it wasn't for ongoing major stressors and health problems, my recovery would have been better. I was put on this drug because my disease brought instant mental symptoms I'd never had before and my mom was dying suddenly. My boyfriend and best friend left me during this time, too. Then CT'd from the Xanax and trying to recover and live through that hell. Then my dad got married to my mom's best friend, sold his and my mom's house. Then my boss tried to kiss me at work (a job which I struggled through every day while feeling so sick). This boss was my good friend's husband. Then I had to quit that job because I felt so traumatized there. Feeling the ongoing stress of being a single mom. With all the trauma that happened to me and our family, two of my daughters developed anorexia and one was so severe she was hospitalized. I thought she was going to die. Two of my dogs just recently died and I had to put them down. I was feeling well enough that we decided to get a puppy and then the puppy got Parvo and almost died multiple times. My house flooded, appliances and cars broke and on and on and on. All while dealing with this benzo nightmare. And now I'm headed into perimenopause which scares the living heck out of me.

 

My stressors have far exceeded my ability to cope for the last 2.5 years. Sometimes I wonder what life I will even have should I survive all of this.

 

Kathy, my UTI is gone,yes, thank you. My naturopath has me on preventative things like Uva Ursi, D-Mannose, Vitamin A and C and something else. She said that she has worked with many people that have been damaged by antibiotics and they are not dealing with benzo withdraw either. It gave me a little hope talking to her yesterday.

 

How is everyone else doing?

[[Ka...]]

Warrior, I just pm'ed you, I really hope you feel better very soon, it's horrible what all these drugs have a potential of doing to us when we are already this sick. Sending you lots of love and healing thoughts.

Neverme, oh my god, 5 setbacks?? oh im so sorry about that, it's unbelievable the little things that can cause setbacks too, i'm so afraid of anything any more. I read all the labels now)) How are you doing 3 months into it? what are your main sx? is it mostly physical or mental? I used to have mostly mental sx with just GI and urinary issues in my previous withdrawal, but in this setback, my mental stuff is still here, but physical is just horrific, I really didn't know it could be this bad.

Well, it is getting a little easier now, I think I had 2nd setback within setback due to covid 3 months ago, so I'm not a usual setback case, but the last 11 months have been tough. My worst sx are the feeling that i'm in a body of a 100 year old person, i feel like I weight 500 lbs, I have a lot of head/chest/stomack pressure, and my body is very sore, everything muscles, joints, bones hurts, i've had all kinds of organ pains, those are getting  better now and maybe I weight about 300 lbs instead of 500lb, but this terrible fatigued, heavy feeling in my whole body with achiness is still here. If it went I think I'd be mostly done with my setback, i'm a lot better mentally too. Those mental sx started getting better around month 6 for me. Oh and I've had terrible agarophobia too in this setback, I can't drive very much or be in a store for more than 10 minutes, never had this in my previous withdrawal either.. very scary, let's hang on tight,

I hope you both see lots of progress quickly and this is short lived. I'm so sorry you are in the same boat. ((((

[[Mi...]]

Warrior,

 

Just got caught up reading this page/topic and your replies.

 

You have been through a lot of stress.Sounds like you have a great Natropath. I'm glad you slept better.

Hang in there keep moving forward.

 

You too KathyM