Medication Induced Setback Support

[[Fi...]]

I understand how anxious you feel. 

 

I can't offer medical advice but I would make sure he doesn't take a Fluoroquinolone class of antibiotics,  which causes issues even for non benzo people.

 

If you are concerned, are there any alternatives he can consider? Maybe something more holistic?

 

That being said, when I was still tapering, I got strep throat and had to take an antibiotic. I was all right. However, there are people on this thread who were pushed into a setback because  of antibiotics.

 

So, perhaps think about alternatives if possible and certainly express your concerns to your doctor. Perhaps there is a molser antibiotic to consider.

 

Final healing

[[Dr...]]

Thank you for your reply and warning about Fluoroquinolones. He’ll need to talk to his doctor about what’s going on. He hasn’t seen her since discovering this site and learning about protracted benzo withdrawal. Hoping she isn’t skeptical.

[[Fi...]]

She can be as skeptical as she wants but you and your son get to make the final decision.

 

You can walk out of her office with a prescription you never fill or you walk out feeling she has your back.

 

You both have all the power.

[[It...]]

I hope I’m posting in the right place. What can you do if you need an antibiotic for an infection? So scary. My son, 27 years old, is the one going through withdrawal recovery. He’s 7 months out and suffering maybe 80% of the way it was in the beginning. He absolutely couldn’t handle going back to square one. But when you need an antibiotic, you have to take it, right?

 

Hey DragonFly,

 

In my personal experience in this community I would say the majority of people in WD do fine taking an antibiotic, more often then not if they're going to have a reaction its more like an uptick in symptoms or a wave, definitely not a full blown setback like the horror stories you are reading about in this thread.

 

My advice would be to make sure that you ALWAYS have a culture done first. There are very few circumstances where they cant take a culture to see which antibiotic would be the most effective against it - this will also show them if nothing grows, and if nothing grows then that means there is also no infection. So make sure to ask for a culture, or a culture and sensitivity (C&S) prior to taking any antibiotic.

 

Most sinus, ear and throat infections are viral in adults, over 80% and don't require and antibiotic. Even if one of these was in the small percentage of being bacterial, taking a "watchful waiting" approach is also something to consider depending on symptoms and health status. I'm not giving medical advice, but this would certainly be something to speak with your primary care provider about. I wouldn't have had my setback had I taken a "watchful waiting" approach instead of just letting a doctor treat me prophylactically.

 

AVOID FLUROQUINOLONES AT ALL COSTS. Non benzo people have been severely injured by these antibiotics.

 

Here's a great post on the topic by Dr. Jen Leigh.

 

https://benzowithdrawalhelp.com/healing/antibiotics-probiotics-and-prebiotics-in-benzo-withdrawal/

[[Dr...]]

Final Healing, thank you, you are right. I’m going to have my son ask her for a referral to a neurologist as well.

 

It’s My Time, great advice and link, thank you. Feeling less unempowered.

[[Fi...]]

Had a small window today even after my usual lack of sleep.

 

It lasted till about noon.

 

Back to being scared about healing from this but I wanted to acknowledge it.

[[Fi...]]

Still trying to heal from my surgery and anesthesia setback. Its been 4 1/2 months and there has been some progress. I can now watch a little TV and read a bit.

 

Yesterday I walked around the block by myself, which is a big deal since I've had agoraphobia from the setback.

 

But sleep is still an issue, along with depression.  I worry not sleeping will l keep me from healing.

 

I'm also tapering Mirtazapine because it has not helped at all from sleep. It actually is making me feel hyper so I've switched it to the morning.

 

If the mental symptoms lifted, I could handle the rest.

 

FH

[[Fi...]]

Had two days in a row of some sleep. That is a first for me in awhile. 

 

Still struggling with depression and of course regret for taking Mirtazapine again.

 

I'm able to watch TV, which I couldn't do a month ago and read a few pages of a book I had started in the summer.

 

I'm hoping to improve even more over the next few months.

[[Fi...]]

Back to feeling deep sadness and depression in this setback.

 

It's the worst feeling in the world to have fought your way off meds and then to be flattened by an outside force.

 

I hope things lift over the next couple of days.

[[Wi...]]

Hi! I have been a lurker for a while but decided it was time I posted something. So first maybe a quick backstory. I was given a long course of cipro in April 2020 and got floxed. I had issues from it - mostly neurological, such as burning skin, tingling, etc. This med affects GABA and as no damage was found in my nerves and symptoms came and went, it was apparent that this was the root of my issues. I had horrible anxiety too but for the most part I was genuinely anxious and terrified. Then between August 2020 and Feb 2021 I was given numerous psych drugs - including benzos, anticonvulsants and antidepressants to stop the symptoms I had from cipro. They never helped and not having had any issues with coming off any drugs before cipro I was not careful and ended up coming off most of them too quickly. I was polydrugged and I don’t know what exactly caused my condition to worsen but all these psych drugs cause similar symptoms. After stopping everything in Feb 2021 I developed mild internal akathisia (uneasy feeling in muscles with urge to stretch them), internal shaking, head pressure, nausea. It was horrible but I had waves and windows and after 6 months it was mostly windows and I was able to live normally with a wave here and there. Nothing too bad, considered myself lucky. I could tolerate a lot of supplements, some meds (PPI, tylenol) but avoided anything else. In July 2022 I was 16 months out from the initial reaction and I considered myself 95% healed. I only had waves consisting in inner vibrations that lasted up to a few hours every two weeks or so. Nothing else from that horrible set of symptoms I once had had. So it was no longer an issue and I was so happy! But at the same time I found out I have some ovulation issues and to get pregnant I decided to take clomid. I took it for 4 days as on the last day I developed visual side effecfs and was told to stop. While taking it I was not worse but as soon as I stopped I knew something was not right. Within 2 days I started feeling weird fatigue (something we would call benzo flu) and familiar buzzing, vibrations, head pressure and tension in muscles started creeping in, so after maybe 5 days of stopping clomid I knew I gave myself a setback. I had waves and windows as well. And after a few weeks I found out I was pregnant. I was happy and scared at the same time as these symptoms and pregnancy do not go well.

 

Today it’s been 4,5 months since then and if anything I got worse. Probably because I had to take some supplements and meds in the course of pregnancy. I know my best bet would be staying off all meds and supplements but it is impossible. The thing is I have GERD (have had it for 9 years) and on a daily basis I take Gaviscon and it is not as bad but when a flare comes staying off a PPI is virtually impossible. And I think this time it revvs me up after a few days. Also, I have frequent UTIs and the first time it happened I took D-mannose I successfully took before the setback and ended up getting more symptoms (weird pulsing and tension in the upper back) and increased anxiety. Then I had to take an antibiotic anyway (fosfomycin, which I tolerated fine before the setback) and this caused another worsening of symptoms with internal itch, being shaky, feeling more restless, etc. This time I thought I was screwed forever as it hit me horribly and I had more symptoms right away, and they kept adding up for a month…

 

I have waves and windows but waves are worse since the antibiotic. My mornings and early afternoons are the worst but sometimes waves go all day long. I can get a few better days only to be bad again.

 

In general during this time my symptoms have included:

- Internal vibrations, tremor, shaking, buzzing and pulsing which feels like heartbeat in certain places such as shoulders or buttocks, intensity changes, I can usually feel it anywhere between my back and the backs of my legs down to my knees and it’s most felt when lying down, sometimes it feels like an internal earthquake

- anxiety and feeling on edge, wired - it’s connected to the intensity of the above inner vibrations and pulsing

- uneasy feeling in certain muscles which ranges from mild discomfort to buzzing to internal itch with an electric quality, the latter is not as frequent but does happen (I would say this is a form of milder akathisia)

- feeling twitchy in some places (not often)

- muscle tension, can happen in the upper back, lower back, buttocks, thighs, lower abdomen, chest, diaphragm, it’s usually one or two places at once, the tension is impossible to relieve, need to wait it out

- when there is a lot of muscle tension in the back I have some weird shivers down my back with this, sometimes they get a bit electric

- skin symptoms - prickly, burning (this is not as frequent and not as bad as the rest, used to be worse right after cipro)

- fatigue with weird pain that feels as if it is in bones, weakness (usually when I have this I don’t have other symptoms)

- tension headaches, head pressure feeling as if I were to pass out (not often)

- air hunger (not often and onty when chest is tight)

- adrenaline surges (not often)

- random palps but HR and BP are always ok

All these symptoms come in waves, it’s usually 2-3 symptoms at a time, I usually sleep ok but as soon as I wake up I start feeling wired, get vibrations with body pounding or weird muscle stuff or both and it either worsens or goes away in the course of the day.

 

I am happy about the baby but I wish I had never taken the clomid. Not sure if I will ever improve. Currently I am on gaviscon, probiotic for urinary health and one herbal supplement for urinary health too. Sometimes I have to go back to Omeprazole but I managed to not take it as frequently and had lomg breaks. At this point I am unable to tell if worse waves just happen or are triggered by what I take but not taking anything is not an option I know antibiotics, hormonal drugs, magnesium and D-mannose are a huge no so I avoid those like the plague, I also told my doc I will not take anything not necessary to save my or the baby’s life. Probably the PPI is bad too but when a flare happens it settles my esophagus quickly and gaviscon when in a flare is like drinking water.

 

It’s all so annoying as sometimes things seem to be looking up and then I get hit again.

I guess I just needed to vent here where people understand. Hope you are doing well.

[[ba...]]

Willhealsoon

 

Much congrats on your pregnancy.

 

You are not screwed forever.

 

I understand what your going through. I was floxed 3x in succession for an antibiotic resistant UTI. I was on xanax at the time, it made no difference.  I know of others who got floxed, and suffered acute injury as well. I was born with 1 kidney, so have had to have surgeries, antibiotics from childhood, etc.

 

Every antibiotic kills everything in our flora, not just the infection. For those of us with brain injury, it usually creates a huge set back. It is a very difficult medication for us, and even non injured people. I am talking about non-flox antibiotics, such as the fosfomycin.

 

I then got polydrugged after the multiple flox. (Same old story, isn't it?) and put on seroquel, because I was in such horrendous shape.  That was about 5 years ago.

 

I could not taper off the xanax (I had been) for years after the flox. And since, I have found tapering difficult. I have found life difficult, and often very painful as I navigate off my 2 meds.

 

The point- when our CNS is set on fire (floxing) it takes a very long time to recover. In my case, years, plus it's made tapering very painful and slow. Additionally, after such an extensive brain injury, I think (just my opinion) that our brain interprets most medications and vitamins and OTC meds as toxins and does not react well to them.  You are still healing from getting floxed. And, each new med you introduce creates a reaction , a set back, or a wave, because you are injured. It does not further injure you, it just throws your brain into confusion as it tries to deal with the medication while still healing from the flox.

 

Your CT of the drugs follows the pattern of post cessation I have seen before. I am really impressed you got through it without reinstating. However, that is another trauma to your system.

 

That is a lot! Floxed, polydrugged with more toxic meds, another antibiotic, Gaviston, a PPI, wow, no wonder your in pain.

 

It is very hard to get off a PPI. It has to be tapered. Just an FYI. Be prudent with it.

 

So here you are today. I am going to give you the good news. You will recover. Getting off most of the poison, although rough to start, will allow your brain and body to heal faster and more effectively than if you were still on all the psych drugs. You are dealing with an iagenic (drug induced) brain injury from the Cipro. It is and will heal, it just takes time. The fact that you get some windows is very encouraging. That means there are times when your brain has recovered in some areas and you feel it. The folllowing waves are simply your brain/body moving to repair another area of damage.

 

I know you feel horrendous, but I am really encouraged that you are well on your way. Be patient, it will take time, no one can tell you when, but it will happen.

 

Congrats again on the baby

-Dove

[[Fi...]]

What an encouraging message baddove.

 

After having my first real window in 5 months (had a few small ones) yesterday, which closed early this morning,  I appreciate you saying that the waves are our brain and body moving onto other areas to repair damage.

 

Gives me a little hope on this hard day.

 

FH

[[Wi...]]

Willhealsoon

 

Much congrats on your pregnancy.

 

You are not screwed forever.

 

I understand what your going through. I was floxed 3x in succession for an antibiotic resistant UTI. I was on xanax at the time, it made no difference.  I know of others who got floxed, and suffered acute injury as well. I was born with 1 kidney, so have had to have surgeries, antibiotics from childhood, etc.

 

Every antibiotic kills everything in our flora, not just the infection. For those of us with brain injury, it usually creates a huge set back. It is a very difficult medication for us, and even non injured people. I am talking about non-flox antibiotics, such as the fosfomycin.

 

I then got polydrugged after the multiple flox. (Same old story, isn't it?) and put on seroquel, because I was in such horrendous shape.  That was about 5 years ago.

 

I could not taper off the xanax (I had been) for years after the flox. And since, I have found tapering difficult. I have found life difficult, and often very painful as I navigate off my 2 meds.

 

The point- when our CNS is set on fire (floxing) it takes a very long time to recover. In my case, years, plus it's made tapering very painful and slow. Additionally, after such an extensive brain injury, I think (just my opinion) that our brain interprets most medications and vitamins and OTC meds as toxins and does not react well to them.  You are still healing from getting floxed. And, each new med you introduce creates a reaction , a set back, or a wave, because you are injured. It does not further injure you, it just throws your brain into confusion as it tries to deal with the medication while still healing from the flox.

 

Your CT of the drugs follows the pattern of post cessation I have seen before. I am really impressed you got through it without reinstating. However, that is another trauma to your system.

 

That is a lot! Floxed, polydrugged with more toxic meds, another antibiotic, Gaviston, a PPI, wow, no wonder your in pain.

 

It is very hard to get off a PPI. It has to be tapered. Just an FYI. Be prudent with it.

 

So here you are today. I am going to give you the good news. You will recover. Getting off most of the poison, although rough to start, will allow your brain and body to heal faster and more effectively than if you were still on all the psych drugs. You are dealing with an iagenic (drug induced) brain injury from the Cipro. It is and will heal, it just takes time. The fact that you get some windows is very encouraging. That means there are times when your brain has recovered in some areas and you feel it. The folllowing waves are simply your brain/body moving to repair another area of damage.

 

I know you feel horrendous, but I am really encouraged that you are well on your way. Be patient, it will take time, no one can tell you when, but it will happen.

 

Congrats again on the baby

-Dove

 

Hi! Thanks for responding. I am really happy about the baby as when the reaction to hormone happened I told my husband that there is no way I can use any fertility help if we still don’t manage to get pregnant naturally.

 

With antibiotics it was definitely floxing that made me react to meds later on as in the past I was able to tolerate anything, I think I only had one reaction to an antidepressant that passed as the drug wore off when I was 21 and that was it. And then floxing happened and since then -  a nightmare after a nightmare.

 

When it comes to me stopping all these drugs CT - I only took ssris for a month or so, they did not work, I managed to stop with no issues, then I had a reaction to one or two pills of duloxetine that was awful but it still was not what happened later on in February. I used benzos only every now and then, not frequently but they still may have something to do there as I seem to be reacting to some supplements touching gaba (for example magnesium always causes a wave) and floxing damage seems to be gaba related anyway. The longest time I was on pregabalin and personally I think it is what tipped the scales, as 2 weeks after cutting it in half I had the bad reaction but if it’s the case I cannot tell. I have all the symptoms benzo buddies have so I do not think it even matters what caused what at this point. I just know that the hormone completely threw me off balance after feeling way better for a longer while.

 

I know I have to be careful with PPIs. I was actually able to take it this year once every 2 or 3 days and it has been enough for me. I had never had a reaction to it prior to the reaction to the hormonal med. I also managed to stop my PPI in the first trimester which was a nightmare as reflux was made worse by pregnancy nausea, then I took it for a while once things got really bad, and about a month ago I was able to stop it for a month again and switched entirely to gaviscon and rebound acid wasn’t an issue but a week ago I had a terrible flare and had to take a few pills over the course of a few days. I seem to be ok with Gaviscon (European version) but it sometimes just is not enough. I did have a reaction to gaviscon advance, no idea why! I know that at this point I will not be able to stop Gav and will probably have to take PPIs in worse flares and I have to stay on those 2 things I mentioned for UTI prevention because they are still better than the possibility of antibiotics. And this makes me worried that healing is impossible. I avoid everything else. I never take painkillers or anything for colds/mild regular ailments. I will never touch any psych meds, ever!

[[Fi...]]

Don't know how everyone is doing but I thought I would post an update.

 

It's been 5 months since my setback due to unavoidable surgery and anesthesia.

 

What has improved.

Can now watch TV

Can now read a little

Agoraphobia gone

Can now walk outside

Had my first real window one week ago-felt like myself for a full day.

 

What has remained

Every other night insomnia

Depression

Grief

I got stuck on Mirtazapine due to the insomnia and am now tapering because it didn't work.

 

I'm so hoping more symptoms will lift this month.

 

Final healing

[[ba...]]

Really awesome that you can see some progress, that is very encouraging. These things do resolve, it just seems to take forever.

 

Keep Going

-Dove

[[Fi...]]

Really awesome that you can see some progress, that is very encouraging. These things do resolve, it just seems to take forever.

 

Keep Going

-Dove

 

Thank you.

 

I cry every day for the healing I lost and I appreciate your support. The symptom I want to lift the most is the depression.  I could handle anything without that symptom.

 

You are such a positive force on this site baddove and your encouraging posts make a difference.

 

Final healing

[[Wi...]]

After my last wave I had a better day followed by a day when I felt like myself from the moment I woke up to the evening, then had a few worse hours and then was better again. Was able to enjoy the day. Went to bed feeling ok. Today another wave has begun, I hate this so much! I usually have a better day or two and they usually happen on Fridays and Saturdays so I can at least enjoy some time with hubby and friends. But waves are awful, today the familiar tension, muscle squeezing, fatigue, headache and mild akathisia are back. Honestly I cannot understand how I can feel horrible for a few days, then feel normal/almost normal and then be back in a wave.

[[Wi...]]

How are you doing people? I am not doing good. 

[[ba...]]

I do not get windows. Just degrees of pain.

 

Remember when I told you the waves are the CNS healing? However, I strongly suspect that those who get windows have experienced significant healing in certain areas, and that creates the window. The CNS then moves on to another area still needing repair, and that is the wave.

 

Trying to figure out why (unless it is blatantly obvious, like an antibiotic) is like trying to put a puzzle together when every piece is from a different picture. It is the residual damage from the drugs, the CNS healing, and that's it. It is that simple most of the time.

 

Also, you are pregnant, so that is no doubt contributing.

 

However, healing is happening, especially in the waves.

 

Just hang on, cultivate acceptance, hope and patience.

 

Time is the biggest factor here.

 

Your going to come out of this. You will heal. You will learn to accept these experiences you can do nothing about and not be so affected by them. I train myself not to think of a pill as the solution, but rather acceptance as much as possible, then distracting or calming behaviors to get through it. And sometimes, that means falling apart and crying or screaming. Sometimes I do take a pill when I feel things have gone to far. It is all good and appropriate in this hell. 

 

Your doing everything right, as best as you know how, with the information you have. So, keep going.

 

-Dove

[[Fi...]]

I'm not doing so well.

 

The daily depression and insomnia crush my spirit.

 

I try to walk when I can but my mood is very low.  It does get better in the eve but not to where it was before.

 

The loss of my former life due to this serback causes me deep despair.

 

FH

 

 

[[Wi...]]

I do not get windows. Just degrees of pain.

 

Remember when I told you the waves are the CNS healing? However, I strongly suspect that those who get windows have experienced significant healing in certain areas, and that creates the window. The CNS then moves on to another area still needing repair, and that is the wave.

 

Trying to figure out why (unless it is blatantly obvious, like an antibiotic) is like trying to put a puzzle together when every piece is from a different picture. It is the residual damage from the drugs, the CNS healing, and that's it. It is that simple most of the time.

 

Also, you are pregnant, so that is no doubt contributing.

 

However, healing is happening, especially in the waves.

 

Just hang on, cultivate acceptance, hope and patience.

 

Time is the biggest factor here.

 

Your going to come out of this. You will heal. You will learn to accept these experiences you can do nothing about and not be so affected by them. I train myself not to think of a pill as the solution, but rather acceptance as much as possible, then distracting or calming behaviors to get through it. And sometimes, that means falling apart and crying or screaming. Sometimes I do take a pill when I feel things have gone to far. It is all good and appropriate in this hell. 

 

Your doing everything right, as best as you know how, with the information you have. So, keep going.

 

-Dove

 

Thanks, Dove, your posts are really uplifting. It just feels like I am still getting worse and that is terrifying.

I honestly hope that pregnancy hormones are contributing and having the baby will help me start feeling that I am healing.

 

I hope you do start to get windows soon or just heal altogether.

 

I'm not doing so well.

 

The daily depression and insomnia crush my spirit.

 

I try to walk when I can but my mood is very low.  It does get better in the eve but not to where it was before.

 

The loss of my former life due to this serback causes me deep despair.

 

FH

 

 

 

I am depressed too. Suffering from symptoms and depressed as a result. Honestly I never imagined that I would be going through pregnancy while at the same time being in the worst condition ever. I cannot enjoy this pregnancy at all. You know, I should be shopping for baby clothes and everything and I just don’t care about it at all. I wonder if I will even manage to be a mom.

[[...]]

I am 49 months off benzos and on November 7 I finished the 2nd course of amoxicillin. The next day I had a whole gamut of acute like symptoms come back , it was terrible but now 11 weeks later I am starting to feel better. I was able to drink caffeine with no issues before this but now caffeine makes me feel like I will go insane.

[[It...]]

Hork,

 

I'm so sorry you're dealing with a setback.

 

You said you had 2 rounds of amox? Were they back to back?

Prior to this did you have much for symtoms left??

 

I was still very sick at 11 weeks post ab. I think the fact that you're seeing improvement is great, great news, and your significantly further out so I believe that helps too (or seems to make a difference from many of those in the 3+ years off that have had setbacks that I've spoken with).

[[...]]

Hey It’s,

I had a wisdom tooth that got infected so I took a weeks worth of amoxicillin and then a week after that I had it pulled and had to take the amoxicillin again. It put me into a terrible depression and other acute like mental sx. So almost 3 months later the depression is gone and feel like I am getting back to baseline.

Before I took the amoxicillin I was feeling almost healed I would say.

[[It...]]

Hork,

 

I just read your signature and totally remember your old username!  I'm so sorry you're back here. Did you have symptoms return after the first round??

I really do believe that you'll be done with all of this relatively quickly, I'm sorry youve had another 3 months of this shit though!