Waiting12: needing advice

[Waiting12]

 

“Penicillins are believed to exert an inhibitory effect on GABA transmission due to their beta-lactam ring structure, which shares similar structural features to those of GABA neurotransmitters [41]”

 

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

 

Edited November 11, 2018 by ChessieCat
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[Alice1]

Hi Waiting ,

You know , I've been feeling a lot worse at 26 months off , and I haven't taken one pill of anything for 26 months . No pills , no teeth issues , no infections , no reinstatements , and I'm still worse than ever . Lately I have been looking into certain people on here with the same timeframe , and it seems like a lot of CT'ers get really bad after two years . Waves12 just posted today about how she's/he's at his/her worst at 28 months . Robcbar is another . He is 32+ months off . Also , there are some veterans who said the same . So , it's probably the stress from everything in life that easily ramps up our unstable CNS , and it's probably just WD as well . Anyway , Just keep burning that time up . Time Time Time ..

 

[Alice1]

How are you doing Waiting ? A little bit better ?

 

[Waiting12]

Thanks waves, I’m sorry you’re having a rough time as well. 

 

Alice, unfortunately no. I’m still in the thick of it all. Effing brutal. But, 3 mornings ago I got 45 minutes of normal feelings, perspectives & positive emotions. Everything felt so easy and I had my confidence and brain back. My home felt cozy, I could feel love, I had all my memories back coinciding with the positive feelings they bring, I just had this comforting feeling of warmth and normalcy. I teared up with joy and felt so much hope. I was absolutely sure at that moment I would recover. Instead of feeling scared and looping thoughts about my physical symptoms I literally didn’t care about them at all. Didn’t bother me whatsoever. Then it went as fast as it came & hope felt lost again. 

 

Since then I’ve been bad with alternating severe depression, hopelessness, anxiety in all forms, crying spells, intrusive thoughts, agitation, akathisia, confusion  & coming and going of what feels like 100 other symptoms. It’s absolutely crazy. I have some symptoms I haven’t felt since my month 1 of recovery. Like what’s going on up there? A lot of new stuff too. No daily patterns and things just change on a dime. Horrid. I know logically that little window was my proof, but It’s like it never even happened now. Still really struggling.

[Freesia]

On 12/29/2016 at 1:16 AM, bubble said:

Again, what you are describing is very familiar to many of us here. We even have a name for it: neuro emotions.

 

It was also a concept that made my life easier: http://survivingantidepressants.org/index.php?/topic/9809-neuro-emotions/

When I click on this link , I get an error that it can't find the content.

[Gridley]

Freesia, try this link:
http://survivingantidepressants.org/topic/14397-neuro-emotions/

[Waiting12]

@Altostrata & Mods I’m desperate and need some advice.

 

I was on Zoloft for 4 years 2011-2014. Cold turkeyed and had mild wd symptoms but didn’t know what they were. Mainly brain fog, nausea and head pressure. I was still fully functioning just knew something was off. I doctored for awhile and after 18 months we tried Zoloft again and had a very severe adverse reaction including akathisia, intrusive thoughts and chemical anxiety. My doctors didn’t understand so I tried several more ssris over the next 6 months each reaction getting worse and ended up disabled at the end of 2016. I quit everything and every month things slowly got better since. I ended up with about 100 symptoms.

 

I was probably up to about 65% better at 18 months out until this July, & getting so much of my life back. Things were so much easier and while I still had a lot of symptoms things were way less intense. I got some new symptoms. One being a metallic taste in my mouth. I had a wisdom tooth I needed to remove and thought that was why. I stressed myself out huge over this due to health anxiety and fear of meds (It wasn’t from my tooth as I still have this symptom but coming and going). This was the start of my current decline.

 

I took one dose of amoxicillin sept 4th this year. I had an extreme reaction to it (I’ve taken this fine in the past). Within 20 minutes my mental state changed to very scary & I couldn’t function. Then I thought it wore off after a few hours but woke the next day with the worst akathisia I’ve ever had. 

 

September- after amoxicillin was very bad waves lasting some hours and wide open windows of my previous baseline of 65%. I also gained a bunch of new symptoms from the amoxicillin including what people complain of when being ‘floxed’. Amoxicillin does act on gaba. Achilles’ tendon pain, severe flu like symptoms, muscle weakness and burning, joint popping and pain, parathesis. I seemed to be going from mental (anxiety, intrusive thoughts, some depression) waves to physical (flu like, pain) waves, during the physical waves I felt ok mentally. I also gained symptoms like when I would fall asleep my hands and fingers would clench, straighten or move on their own waking me up??? (What is this), hypnic jerks, adrenaline rushes, hair, skin and nail changes, insomnia, horrid anxiety that felt more real than the chemical anxiety I’ve experienced. Then I got my wisdom tooth extracted sept 24th with lidocaine topical, carbocaine injection, a bone graft patch which the dentist said was only made up of calcium and collagen, and a medicated mouthwash that I used for a week. I didn’t use any pain meds during the recovery. The only thing I noticed from the carbocaine is return of sweaty hands and feet, they are still constantly cold and drenched.

 

Oct 1st I took an Epsom salt bath that triggered a terrible return of chemical anxiety and loud tinnitus. I’ve tolerated Epsom salt during my recovery as well but not after the amoxicillin. Most of October felt like I was in a chemical anxiety attack along with the symptoms above. I was sleeping okay again and was just waiting this out. The windows stopped but I was coping until October 26th I got hit with the scariest depression I’ve ever felt with some agitation. I can tell it’s chemical but that doesn’t make it any easier. Crying spells and becoming non functional. My menstrual cycle was 2 weeks late so I just figured I was in pms and things would get better. I finished my period 2 days ago and things keep getting worse.

 

My recovery was mostly chemical anxiety that I could tell wasn’t me but from the drugs, but whatever the amoxicillin triggered feels like a whole other beast and I’m scared. I know it’s not me but it feels a lot more ‘real’. Maybe it’s due to acting on gaba instead of serotonin?

 

November- Im getting worse. The depression won’t lift, I get waves of severe agitation that I don’t know how to cope with with the most extreme akathisia. I have become totally ocd and all I can do is read forums for hope, re-reading stories of setbacks from antibiotics & that things will get better. I’m not sure if it’s mental akathisia or ocd but that’s all my brain is interested in. I can’t focus on anything other than this which i know is not healthy, but my anxiety is so high 24/7 I can’t think. If I’m reading & my mind is busy I can lay down or else I’m just super restless. I feel like I’m going to lose my mind. I also have been very hysterical and inconsolable during the high agitation and akathisia. I’ve never had it so bad. During the waves that last 1-3 hours or so, I can’t see past it and I get desperate and want someone to help me. This has only been really bad since Sunday but I get multiple waves a day. I have very scary intrusive thoughts that come and go. Things have only been getting worse and harder each month. I honestly feel like I’ve been floxed but don’t even know how that is possible?

 

so... I can’t believe I am even saying this after how messed up drugs have made me and how ruined my life has been since 2016, but i feel I need help. I’m thinking of reinstatement if something to get stable and do an extremely long microtaper. Is that even a good idea?

 

I could cope without this agitation. That’s the only thing making this completely unbearable. What helps with that? Will anything I try have the potential to make it worse? I’m trying so hard not to be dramatic but I haven’t been able to cope with it and I don’t want this ugly condition to be the end of me. So benzos? Beta blockers? Any ideas. I know this is a site for getting off but I really need help. I’m so extremely sensitive to everything that I’m at just a loss.

 

if I do try to ride it out how long will it keep getting worse? I feel like my body and brain just keeps breaking down further as it’s been 70 days. I’m scared for how much worse it’s going to get. I REALLY don’t know what to do. This isn’t me at all. I can handle the 100 symptoms, I just can’t do this agitation/akathisia. It physically hurts in my chest, it’s really just the worst feeling I think a person could feel & nothing I do helps it. I’ve had akathisia for months without the agitation and the intensity wasn’t  that bad. Same with the other symptoms. I can do the anxiety etc but once the agitation is there I don’t know what to do. It gives me SI or harm ocd? which scares the absolute **** out of me. I know it’s a symptom and from the drugs but I think I need to try to reinstate something. Is there anything I wouldn’t react to badly? Anything that won’t make the agitation worse? I know I can’t take ssris. I have zero calm in my body. I have zero quality of life and can’t take care of myself. What do I do? What would you do?

 

I want nothing more than to be me again and drug free but I’m in hysterics. Am I just in some sort of acute phase? Is it my hormones? Why is the reaction slowly getting worse instead of better after this long? Do I keep riding these horrible agitation waves? I feel like I have brain damage & I’m very scared.

[Waiting12]

On Sunday I had the severe agitation for 3 hours then again 1 hour and again another 1 hour.

 

Monday I had it twice for a half hour each time.

 

Today I had it for 2.5 hours. 

 

Anyone have any coping mechanisms? Do you treat this like panic since it’s the fight or flight response going nuts?

[bubble]

Hello Waiting. Sorry to hear you have been hit by such a bad wave.

 

I just wanted to know that some of us have also been hit by very bad symptoms as a reaction to antibiotic and in particular to dental anaesthetic. Last year it happened to me and it lasted for at least 2-3 months before it began setting down. When I'm at my laptop I'll find a thread about that. Pokeshaw experienced the same. Reading about her experience made it easier for me to understand and accept it's a reaction to these substances and ride it out.

 

You had a nice little window and that is a sure sign that healing is happening and more of it is on its way. And healing is like that: very messy and illogical and full of strange symptoms but it happens. 

 

As far as coping is concerned I would say anything that works for you to reduce fear and has a calming effect (although you might not feel it right away it will work in the background. Maybe some calming breathing, a meditation that works for you, gentle yoga stretches. What works best for me are walks in nature or just being in nature with its healing energy.

 

Have you listened to Claire Weekes? Anything that will constantly remind you that this is just a way caused by these substances but that healing is on its way. I'll post some links later.

 

Hang in there.

[Alice1]

Hi Waiting ,

I just wanted to say that I have all those same issues going on currently , especially the agitation , and I haven't taken any antibiotics , or pain killers .. I'm not a Mod or a doctor , but I'm convinced it's just WD you're experiencing . . A lot of my friends are just as bad as us at the same timeframe .. There's a lot of success stories that have similarities ..

[Gridley]

Waiting,

 

Here are some links that may be helpful in coping:

 

Audio:  First Aid for Panic (4 minutes)
 

Audio:  How to Recover from Anxiety - Dr Claire Weekes
 

Anxiety Stuff - all kinds of stuff about anxiety attacks and things that help ...

 

 Relaxation exercises, guided meditations, calming videos, sleep hypnosis

[Waiting12]

Thank you all very much for your support and the links. My symptoms cycle so fast and they are all very intense/ no distracting. Had a couple multiple hours long panic/depression/ocd attacks earlier and some crying spells. Had another window (thank you god) 5-7ish, then overwhelming fear. Not panic, just a weird paralyzing fear of everything and nothing at the same time. It tries to attach to the most stupid things. Thankfully no harsh agitation today but was in fear of it returning all day. Now feeling just spaced out and kind of confused..

 

Whats with how fast everything changes? I was a slow and gradual healer before this setback. I’m overwhelmed with the fast cycling and intensity.

 

These symptoms feel different than before. I wonder if my gabas have been affected. Do you guys think this is just a bad wave or a new reaction to heal from? I’m clueless.

[ChessieCat]

Video:  Healing From Antidepressants - Patterns of Recovery

 

From what-does-healing-from-withdrawal-syndrome-feel-like

 

Basically- you have a building where the MAJOR steel structures are trying to be rebuilt at different times - ALL while people are coming and going in the building and attempting to work.

It would be like if the World Trade Center Towers hadn't completely fallen - but had crumbled inside in different places.. Imagine if you were trying to rebuild the tower - WHILE people were coming and going and trying to work in the building!  You'd have to set up a temporary elevator - but when you needed to fix part of that area, you'd have to tear down that elevator and set up a temporary elevator somewhere else. And so on. You'd have to build, work around, then tear down, then build again, then work around, then build... ALL while people are coming and going, ALL while the furniture is being replaced, ALL while the walls are getting repainted... ALL while life is going on INSIDE the building. No doubt it would be chaotic. That is EXACTLY what is happening with windows and waves.  The windows are where the body has "got it right" for a day or so - but then the building shifts and the brain works on something else - and it's chaos again while another temporary pathway is set up to reroute function until repairs are made.  

[bubble]

I don't know if you checked our thread on dental medication: 

Pokeswah had a very bad reaction which reminded me of you now:

17 days out from root canal that sent me into the worst wave since my original w/d in 2011.  I had a feeling it would activate symptoms but I did not expect it to be that bad.  .

 

Today was a tiny bit better. I am hoping for more improvement as the days go on.

 

Poke

 

I also ended up in a very bad wave but got back to my baseline gradually, after a few months... Hope you get better soon.

 

 

 

[Waiting12]

Thank you bubble very much. I did read. I hope to God this is just a bad wave of something like you both had and will go. Thank you for the links.  That’s what Ive read over at the bb website too..3-4 months a lot of members felt like they went back to acute then popped out of it...What concerns me though is this doesn’t feel like my original recovery. It doesn’t feel like my first acute or a bad wave of my wd normal like you and pokeshaw have wrote. All new excruciating mental and physical. What does that mean?

 

It has slowly gotten worse not better over the past 2.5 months, is that normal too? Or maybe I just think it’s worse because Its a new phase that I hate. Sept & october was severe health anxiety(new for me) now that has passed but the severe ocd and depression keep interchanging which is harder than health anxiety.

 

During the health anxiety phase I kept telling my fiancé, “I don’t understand why these symptoms are scaring me so much, I’ve had 100s of symptoms over the years, why am I feeling this way? I keep normalizing them and my brain won’t accept.” 

 

Will it level off and improve at some point? Sun-Tuesday was the worst I’ve ever felt..ever. Still getting nailed since then but not with the agitation and have had some sun breaks and windows.

 

I’m very concerned and trying to figure out what is happening here. The new symptoms I’m rapid cycling (my original recovery was slow gradual) through are: the scariest depression/despair I’ve ever known (My wd was mostly chemical anxiety not depression),scary intrusive thoughts & feelings, ocd, panic, fear, Achilles heel pain, joint popping, muscle weakness/cramping/burning/tension, hypnic jerks, burning spine, restlessness, overwhelming creepy feelings of doom and gloom that makes me feel crazy because my perception is so off, thoughts are skewed, sweating, chills, shivering, goosebumps, nausea, constipation, no memory/concentration, insomnia etc... Things can change within the hour so now I’m agoraphobic because I don’t know what’s going to hit me at any time. Is this rapid cycling a good thing? I’ve never felt so ungrounded and thrown about.

 

i do still have multiple symptoms from my original wd normal that are worse as well...but those don’t bother me at all in comparison.

 

i dont know how to explain it other than saying it feels worse than my acute & I’m constantly fighting my negative, scary and morbid thoughts for a balanced perspective because this is SO off and not myself. Not even my withdrawal self.

 

I need to know did you get any new symptoms that weren’t your wd normal after your dental reaction? 

 

But even though the antibiotic triggered new things for me will these still lessen in intensity and heal like symptoms from other drugs would? I’m just so confused. My family doesn’t get it because ‘they give amoxicillin to babies’. I don’t get it either because I took it last year for 2 weeks. Thankfully my fiancé has been very supportive and watched me get much better the first time and believes I will again. However, my first time around I saw improvement every month after the reactions which carried me through, not a worsening which has me very freaked out.

 

I could fully handle this if it felt like my first acute. I did it before and I could do it again. I would cope the same way I coped then. But this is new, scarier and stressing me out. I know once I start to see improvements and know the worst is behind me I’ll be in such a better headspace. That’s really I’ll ive been waiting for.. I just need to see improvements, then I will know in my heart it’s going to get better. But for now I feel like the rational part of my brain isn’t working and each wave feels like my life is over. Is this really all normal?

 

Thankfully I have been having small windows or feeling a little better in the evening. Between 11am-5pm is a horror show in my brain (like now). By bedtime the past few nights I have felt back to my baseline which makes me feel normal compared to this, but it doesn’t last long and some nights have been really horrendous too. During the windows I can’t remember how badly I felt. I’d live at my previous baseline for the rest of my life if it just meant this new horror show will go away.

 

I’m sorry this is so all over the place. I just really don’t understand what is happening. Thank you for being such a help.

[Waiting12]

Another weird thing is before one of the hallmarks of my recovery was intrusive memories that brought feelings of long lost familiar feelings and positive emotions. Now my intrusive memories are filled with doom and fear.

[WiggleIt]

Dear Waiting,
 

Have you read the Success Story by Aeroman?  He recovered from ADs, from WD, and then he was set back into a wave by taking ciprofloxacin (antibiotic).  He did recover from the cipro setback, and he was kind enough to chronicle all of his recovery for everyone here.  He definitely described doom and darkness and depression intensely as part of his reactin to the antibiotic, but he did recover.

I'm praying that you recover from this setback.

[Aelius]

Hello Waiting,

 

I`m very sorry you have to go through this. Your recovery process looked so promising. I believe that a turning point is ahead of you and sooner or later you will get better again.

Last Christmas I took amoxicilline too and I felt misserable all the time. It took me one month to get there where I was before taking antibiotics. Three weeks ago I got sick again. This time I took cefuroxime. I was nauseous after the very first pill for three hours and from then on no side effects. It didn`t trigger worsening of my usual withdrawal symptoms neither new ones and I returned to work last Monday.

[Waiting12]

Thank you WI & aelius. I hope so too. It’s been over 3 months now since the setback. I really hope I come out of this soon.

 

On 11/27/2018 at 4:23 AM, Aelius said:

Last Christmas I took amoxicilline too and I felt misserable all the time. It took me one month to get there where I was before taking antibiotics.

 Nice to hear from you again. Yes I was gradually recovering and hit a rough wave in August that I thought was due to a wisdom tooth I had needed removed for some time. Finally went through with it and here I am with the worst setback. 2 year anniversary now from all my adverse reactions and worse now in some ways. I can’t even believe it. Can you tell me did your wave from amoxicillin clear gradually or was it a sudden thing? Did it give you new symptoms? I hope you are doing well. Glad to hear that antibiotics now didn’t trigger you and that you are working. I’m scared I’ll have to avoid medicine for life, but then I’ll read that these sensitivities can go away which keeps me hopeful. But then I’ll read a story of someone who was recovered for years and put right back into it from a random medicine or alcohol & that makes me feel doomed.

 

Anyone else out there had a setback this long (into the 4th month now) from a medicine reaction during wd? It seems like a long time. 

[Aelius]

On 12/11/2018 at 7:10 PM, Waiting12 said:

Thank you WI & aelius. I hope so too. It’s been over 3 months now since the setback. I really hope I come out of this soon.

 

 Nice to hear from you again. Yes I was gradually recovering and hit a rough wave in August that I thought was due to a wisdom tooth I had needed removed for some time. Finally went through with it and here I am with the worst setback. 2 year anniversary now from all my adverse reactions and worse now in some ways. I can’t even believe it. Can you tell me did your wave from amoxicillin clear gradually or was it a sudden thing? Did it give you new symptoms? I hope you are doing well. Glad to hear that antibiotics now didn’t trigger you and that you are working. I’m scared I’ll have to avoid medicine for life, but then I’ll read that these sensitivities can go away which keeps me hopeful. But then I’ll read a story of someone who was recovered for years and put right back into it from a random medicine or alcohol & that makes me feel doomed.

 

Anyone else out there had a setback this long (into the 4th month now) from a medicine reaction during wd? It seems like a long time. 

Hello, as far as I remember I didn`t have new symptoms and the wave cleared up gradually withing several weeks.

[Waiting12]

It’s been 5.5 months since I took 1 dose of amoxicillin and I’m still in h***. 100 symptoms again. How is this even possible? Why do most people get a wave of a month or so if antibiotics rev them up and I’m still in acute? Will I ever heal and be able to tolerate any medicine again in my life? I just don’t understand this. Why and how?

[Alice1]

Hi Waiting ., Its your old pal Jeff ..

Hey , just hang in there ok ? It's going to get better , it's just going to take a good stretch of time .. I had 3 months of extreme stress last November , and I'm in a wave worse than my acute wd .  I mention this because I haven't taken anything (not even a Tylenol) and it was way too much for my sensitive CNS ..  So , it might not be just the one dose of AB that set you back .. I have noticed that even a heated conversation with someone will stir stuff up to high levels .. 

[Waiting12]

2 hours ago, Alice1 said:

Hi Waiting ., Its your old pal Jeff ..

Hey , just hang in there ok ? It's going to get better , it's just going to take a good stretch of time .. I had 3 months of extreme stress last November , and I'm in a wave worse than my acute wd .  I mention this because I haven't taken anything (not even a Tylenol) and it was way too much for my sensitive CNS ..  So , it might not be just the one dose of AB that set you back .. I have noticed that even a heated conversation with someone will stir stuff up to high levels .. 

 

 

Hi Jeff, thanks. I’m so sorry to hear about your stress wave. Did you ever get that mri last fall? It’s unbelievable how sensitive we are. I have so many chemical sensitivities now I just can’t even believe this is real life, ya know? Has the wave started to calm a bit yet? An yes, the stress tolerance is zero... completely zero for me too. I’m sorry you are feeling worse than acute. Remember Baylissa said she felt that same way right before she got her open door of healing. 

 

I do believe that this was from the ab because these symptoms are different & it hit within 20 mins of taking the amoxicillin then the next morning after it wore off, the worst akathisia I’ve ever had...& continued to domino effect from there. It’s like it reignited akathisia all over again but it has a different feel and symptoms. It doesn’t feel like a setback of my ssri symptoms. I think that healing was solid and may still be improving under all this mess. I personally think my gaba receptors were smashed by the penicillin. Sounds unbelievable, I know, I can barely wrap my head around it myself.

 

As positive as I tried to be throughout hoping it was a quick setback like others have reported, I am now believing I started my recovery over from day 1. It is progressing in the same exact timeframes and patterns so far, so essentially I feel comparable to how I did in April 2017 (which was the end stages of acute, keeping my fingers crossed this is the last big bad wave before I turn that corner like I did before at 6 months). I’m devastated but can’t do anything but hope for healing again, hopefully faster at some point this time. I’ll post my new symptom list when I can. Maybe over the months I can start crossing them off like I did last time. 

 

What crap!

 

[bheb]

I am so sorry waiting. Akathisia is brutal and I’m right there with you. 

[Waiting12]

16 hours ago, bheb said:

I am so sorry waiting. Akathisia is brutal and I’m right there with you. 

 

Thanks bheb, I’m sorry you’re feeling badly as well. How long has your wave been?

[bheb]

So I have akathisia pretty constantly. I’ve only had short windows of lessened severity here and there. Oh, and it is also varies in severity throughout the day and depending on what I’m doing (lying down, sitting, standing, walking, etc.)

 

That’s really awful that one round of antibiotics can set you back so much. However, I am hopeful for you since you are able to pinpoint the cause of worsened symptoms...that given enough time you’ll creep back towards stability. But I know it doesn’t make it any easier for you in the meantime.

[Waiting12]

3 hours ago, bheb said:

So I have akathisia pretty constantly. I’ve only had short windows of lessened severity here and there. Oh, and it is also varies in severity throughout the day and depending on what I’m doing (lying down, sitting, standing, walking, etc.)

 

That’s really awful that one round of antibiotics can set you back so much. However, I am hopeful for you since you are able to pinpoint the cause of worsened symptoms...that given enough time you’ll creep back towards stability. But I know it doesn’t make it any easier for you in the meantime.

 

Thanks, yeah not even a ‘round’ of antibiotics. It was just 1 dose. I still can’t even believe it. After I took the first dose I had anxiety and bad mental symptoms & an overall uncomfortable drugged feeling so decided not to take anymore then thought it kind of wore off that evening. Then I woke up the next morning and BAM. Gave me the worst akathisia I’ve ever had the day after. I think I was practically running. I understand what you mean though, mine changes in severity throughout the day and depends on what I’m doing too. I’m sorry you are feeling this too. 

[Survivor1]

Hi Waiting12,

 

So sorry that you are still in the thick of it.  It's quite remarkable that only one dose is sufficient to do this.  Shows how unique we all are...

 

I have had almost every symptom throughout my drug withdrawal journeys but am fortunate to be spared akathisia.  I can't imagine what it must be like.  In times when all seem lost, I always tell myself (literally, aloud) "it has to get better" and I try to imagine 5 years down the road.  It really cannot be like this 5 years hence. The hardest part is to pass the time until then!

 

I too wonder about taking different meds and reacting to them.  My most recent was propofol.  I have never had a reaction to it, had it about 4 times before for various procedures.  But now it has thrown me for a loop.  

 

I hope you find some relief soon.  We are all due for some good news ... Take care and hang in there.

[Waiting12]

On 2/22/2019 at 5:01 PM, Survivor1 said:

Hi Waiting12,

 

So sorry that you are still in the thick of it.  It's quite remarkable that only one dose is sufficient to do this.  Shows how unique we all are...

 

I have had almost every symptom throughout my drug withdrawal journeys but am fortunate to be spared akathisia.  I can't imagine what it must be like.  In times when all seem lost, I always tell myself (literally, aloud) "it has to get better" and I try to imagine 5 years down the road.  It really cannot be like this 5 years hence. The hardest part is to pass the time until then!

 

I too wonder about taking different meds and reacting to them.  My most recent was propofol.  I have never had a reaction to it, had it about 4 times before for various procedures.  But now it has thrown me for a loop.  

 

I hope you find some relief soon.  We are all due for some good news ... Take care and hang in there.

 

Thanks survivor. Yes akathisia is...you know I don’t even have an adjective to describe it.... I’m glad you’ve been spared. What’s even scarier is it seems for sometime after you get well from it that it can be reignited by a very long list of rx meds. Like almost all of them. I’ve read so many stories of an Advil, antibiotic, Benadryl, steroids or blood pressure medication etc.. kicking it off again for people. It’s nonsense. I feel like even if I get well from this my life will be a mine field to avoid everything.

 

I do wonder if there’s a break off point where the cns loses its sensitivity at some point after feeling healed like Baylissa says though. I sure do hope so.

 

What are you feeling from the propofol? I’m so sorry to hear about that. I don’t get why we are okay with some meds then later on aren’t. I took 3 weeks of amoxicillin in early recovery (& many times before that) without incident as well. Then later on in recovery 1 dose blew my cns out. I don’t understand the why or how at all. I do hope you get over it quickly.

 

& thanks for the well wishes! You too. & you are right a lot of us seem to be going through rough patches right now for whatever reason...but it can’t rain forever.

 

❤️ Take care

[Survivor1]

 

13 hours ago, Waiting12 said:

What are you feeling from the propofol?

This reaction is a direct consequence of the WD from the steroid.  The propofol actually remitted all the symptoms from the steroid WD; for a few days after, I felt fantastic.  But as time wore on and it dissipated, I was back to WD.  Apparently both steroids and propofol bind to GABA receptors, and the propofol acted like a brief reinstatement of the steroid.  I think people on ADs probably will be fine with it, as ADs involve serotonin not GABA.

 

 

13 hours ago, Waiting12 said:

What’s even scarier is it seems for sometime after you get well from it that it can be reignited by a very long list of rx meds. Like almost all of them. I’ve read so many stories of an Advil, antibiotic, Benadryl, steroids or blood pressure medication etc.. kicking it off again for people. It’s nonsense. I feel like even if I get well from this my life will be a mine field to avoid everything.

I feel the exact same way!  In fact I have a lung infection that requires antibiotics, and I am holding off for as long as I can because I am almost sure that I will have a reaction to it.  At the moment I really cannot deal with another setback, though at some point, I will have to take it 😨

 

I have been researching antibiotics and have decided to take doxycycline.  My doctor had suggested augmentin, but all penicillins (also cephalosporins, and fluoroquinolone) affect GABA receptors, so for now I am staying far way from those.  I have been on the Benzo-buddies forum and have seen others have a reaction to doxy also, so it is not without risk.  I'm just going to have to suck it up, and gather some strength in the meantime before I take the plunge.

 

 

On 2/22/2019 at 5:01 PM, Survivor1 said:

I always tell myself (literally, aloud) "it has to get better" and I try to imagine 5 years down the road.  It really cannot be like this 5 years hence.

(Insert image here of 5-year projection, lol.)

 

Best wishes!

 

[withhopeinmyheart]

Hi waiting! 

 

Wow, I just read your whole thread. While not the exact same thing happening to us, I find myself so much in your early posts. 

Not being able to distract, nap, the ruminating. And much more... 

 

Sending healing thoughts and hugs! 

[Kronos18]

Hi.How are you feeling Waiting?

[Waiting12]

Hi there,

 

Not going to lie, I feel like garbage. I’ve been meaning to post but thinking about the past 8 months and what I’ve been through is really painful. I had a ‘floxed’ or ‘ct Benzo WD’ reaction to a single dose of amoxicillin antibiotic somehow along my healing journey and I’m still suffering from it. It has instilled a lot of fear and doubt in me about my future with future drug reactions, cns sensitivities and the permanence of healing from this awful situation. It made my original recovery from the ssri withdrawal and adverse reactions seem like ‘the good ole days’. 

 

I will say a week ago a had to get another infected impacted wisdom tooth extracted. Lucky me! I was really stressed the days leading up to the appointment- mostly about the possibility of another drug setback (Since my last wisdom tooth extraction last September is when the antibiotics sent me packing to hell...) I used topical numbing gel, I think prilocaine, which I did briefly react to with a hot rush of panic (epinephrine perhaps?). Then carbocaine for numbing which went okay I think. I did have pretty strong dp/dr and felt spaced out til the numbing wore off about 5 hours later which happened after my last tooth extraction as well when the same locals were used. I thought the first time it was a stress response but I’m now thinking maybe it was from one of them... I opted again not to take any pain meds and just use ice for recovery. I reacted badly to a baby aspirin over a year ago so I’m 99.9% sure I wouldn’t be able to tolerate tylenol or ibuprofen. To scared to try and find out after I read some others reactions. Also told them I won’t take antibiotics and they said that’s fine, they don’t usually prescribe them anyways - that the infection leaves with the tooth. So I’m still healing from that, still having some pain and on a modified liquid/ soft diet for now. But at least that’s over and no more bottom wisdom teeth to ever give me problems again!

 

Also, another update is that it was recently my birthday and I realized it was the 10 year anniversary that I had been a smoking cigarettes. Really freaky how that snuck up on me. So with the oral surgery right after my birthday, it seemed like time to pull the plug on the cigarettes. So I’ve been in nicotine withdrawal for 9 days now. Which isn’t fun, but seems for most people it lasts for around 2-4 weeks. Most people saying the first 2 weeks are the worst.... I hope I am one of those people. I’ve wanted to quit smoking for a long time but didn’t know how to or if I should wait until I was better from all this. My original plan was to wait til I was recovered from this mess- but that’s coming up on 3 years ago now (4 since my cold turkey off Zoloft) It hasn’t been a good 27th birthday so far with the surgery and nicotine withdrawal. Kinda feel like I keep getting kicked while I’m down, i don’t know whether to laugh or cry at this point. Hopefully I get some relief after the nicotine withdrawal passes. 

 

 

[Kronos18]

I’m sorry you are feeling like this.I am feeling like **** too, since 4 days with symptoms from the begining, it really sucks but i guess only time will tell our stories, but I think they should have a good space for us, because we will write the most amazing succes stories here.I promise you that

[Survivor1]

Hi Waiting12,

 

How's it going?  Hope you are feeling better!

[Waiting12]

On 8/18/2019 at 1:54 PM, Survivor1 said:

Hi Waiting12,

 

How's it going?  Hope you are feeling better!

Hey there, sorry for the super late reply. I’m usually over on BenzoBuddies more often because the antibiotic affected my Gaba and those symptoms are the same as mine. How are you doing ?
 

My update isn’t good news. It’s been 17 months since my severe ‘floxed’ reaction to amoxicillin, and I’m healing just as slow as the first time around, which for some reason is at a glacial pace for me. I’m still very sick in numerous ways— some symptoms from my original cold turkey from 2015, some still from all the ssri adverse reactions in 2016, and very many still from being floxed by the antibiotic in late 2018, which brought on complete hell in so many ways. My CNS was so sensitized by ssris that 1 pill of amoxicillin ruined me. If it didn’t happen to me, I honestly wouldn’t believe it’s possible.
 

But even with all the ssri horror, I still felt that I was still ‘in there’ deep down. However, whatever the antibiotic did took that away. I don’t know how to explain the anguish of that but it’s like the inner ‘me’ was extinguished. This gaba block/depletion stuff is so extremely painful mentally, emotionally and physically in ways different from my ssri experience, which was also horrid but in other ways.

Yes, it’s still akathisia but it has a different feeling to it. It’s more physically (nerve) painful in my solar plexus, arms and legs, and has left me with just the most black tar anguish style depression that I never ever felt before, not even with the ssri wd and reactions. Not only that, the physical agitation is the worst thing I’ve ever felt. Hopelessness all around. I’m also still racked with numerous physical symptoms like still can’t focus my eyes to see due to twitching (nystagmus), always have vertigo, complete disconnect of emotions, feelings or memories. Tendon popping and pain, especially Achilles. Chemical sensitivities like crazy, feel like I have an electrical current electrocuting me, chemical anxiety. I could go on but it’s literally a mile long. No windows still. But hormonal times make me unable to function.

 

 I truly feel like the medical community severely harmed me and left me for dead without any answers, validation, or support. My life hasn’t resembled anything even close to normalcy since mid 2016 when I first got akathisia from an adverse reaction to ssris. I am just so deeply saddened by this all. I so badly just want to heal and move on from this painful time. This long road has started to make me bitter and jealous of everyone I see who isn’t me. It’s just been so long without hope at this point. 
 

I doubt I’ll ever be able to tolerate a pharmaceutical if needed ever again if this is what one pill of amoxicillin did to my body. It’s hard for me to accept that I’ll never get to be a normal person and take medicine for procedures, possibly miss out on having children, or have a drink at a wedding, or literally use soap with magnesium, eat chocolate or sugar etc etc. My body is just so ruined. This is a crime.
 

Will I or we actually heal up all the way? I have such deep ptsd at this point I don’t even know which way is up. I sincerely hope others are finding wellness. 🙏🏼