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My cold turkey and floxed story.


[Ke...]

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I went back and edited the original post.  Somewhere around month 10 I got another whacking.  It lasted for a couple of months but no where near as severe as in the beginning.  I'm now almost 16 months out and doing really well.  I might get some dizziness throughout the day but it only last for maybe a half hour.  The tinnitus is the only symptom I can't shake. 

 

Kenneth I am so glad to hear you are doing much better at 16 months out! Congrats!!!! Thanks for giving us an update.  I wish you much continued healing and success! :smitten::thumbsup::yippee: :yippee: :yippee:

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  • 2 weeks later...

Kenneth,

Thank you soo much for sharing your story...and sharing important information regarding cipro etc...

I have been dealing with horrible peripheral neuropathies since about '08 and searching for reasons why this is happening and possible solutions.

I have been to several neurologists and docs, and OF COURSE, none have asked about med history or suggested them as the cause.  (I was on cipro several times during that time frame.)

I am trying to get my med records to try and figure this out...and your post gave me new insight. I cannot thank you enough.

Blessings,

itzsweird

 

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I'm having an awful flare-up right now myself, but your post gave me the first laugh I've had in days. "Still believed I was retarded and would repeat this to anyone who would listen"

 

Rolling. On. The. Floor!

 

Thank you Kenneth, and best wishes :)

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  • 2 weeks later...

Dear Kenneth,

 

thanks for sharing your success story.  I was "floxed" also..  I had taken it for many years due to frequent UTI's as I'm allergic to Sulfa drugs like Bactrim which is what they usually prescribe - I found out I was allergic because one day in my late 20's I broke out in hives.

 

So for many years I took Cipro - at least 2-4 times a year for almost 15 years for my UTI's.  Then I had a cold turkey w/d from Ativan in Jan 2008.  I was coping the best I could about 4 weeks into it - my Mom was in the hospital and I was visiting her everyday with my Dad.  One day I woke up with a UTI and called my Mom to tell her I wouldn't be in to see her because I felt pretty awful (fever, pain, etc.) so I take my Cipro, curl up on the couch and don't let the guilt get the best of me for not visiting my Mom and figured I recuperate on the couch, get comfort food and watch movies all day. 

 

Within an hour I felt like I was losing my mind - my heart started to beat out of my chest, I started to sweat, anxiety over the top (remember I'm into a 4 week c/t) and I started to become almost psychotic with the anxiety.  I called my doc and she said, "oh, yes, I've heard Cipro can do that" and she switched me to Macrodantin.

 

I wonder how much the Cipro for so many years and what I took in my c/t have contributed to now long term pain issues (muscle/ligament/tendon, neuropathic pain) and other CNS problems because the cold turkey and the Cipro I took.

 

Didn't mean to turn this into a discussion about the "floxins" but so many other people seem to be sharing the same experience.

 

You've overcome so much and your success story gives me feeling of hope and comfort - thank you so much for posting it.

 

Sara

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  • 2 months later...

A few members on here have asked me to post what I went though after my cold turkey off 4 mg clonazepam of 10+ years and how I am doing now for encouragement to others.

 

I wish I could have started a journal of my journey but I was way to messed up for a long time.  I want to warn anyone thinking about going cold turkey that it is no way shape or form is it an easy way out. There is a reason why the Ashton manual warns against taking fluoroquinolone antibiotics (Levaquin, Cipro, Avelox etc).  It down regulates the gaba receptors and throws you into withdrawals.  I want to add my own two cents here about these antibiotics.  They can cause some serious side effects of their own wether your on benzos or not.  I had taken them in the past with no problem.  Each time you take them you are playing russian roulette.  I had some serious tendon and joint problems and went through a few surgeries.  If your wondering what floxed is, it's what people call themselves when they get hit by these drugs.  They even have forums.  I also had many CNS problems which I contribute to benzo tolerance for close to a year.  I went to many specialist trying to figure out what was going on with my body and each one was stumped.  They all had my prescription history and not one made the connection.  I finally shared what was going on with a retired physician who lives down the street from me.  The first question after telling him my symptoms was are you on any benzo's?  He had seen the symptoms before and advised me to wean myself off them.  I was stupid and decided I wanted off right then and there and did my cold turkey. 

 

The timeframe may be a bit off.  Basing this off memory.  I'm sure I also have missed other symptoms.

 

So New Years Eve 2009 was my last dose.  The nightmare really began.  

 

 

I was lucky if I got more than 2 or 3 hours of sleep.

I couldn't speak coherently or understand conversations.

Throat and chest felt constricted and had a hard time swallowing or getting a deep breath.

Bladder felt numb.  Hard a hard time starting to urinate and once I finished I would dribble pee for an hour or two.

Tinnitus

Muscle spasms and cramps

Muscle twitching

No appetite

Blurred vision

Rapid heart beat and blood pressure would drop

Sweating non stop and smelt of ammonia.

Huge boils in left armpit

Acne

Coughing up mucus

Limbs felt heavy

 

February

Lived on the couch watching T.V. with heating pad.

The only real change was bladder control returned

 

March

Started getting windows of relief at the beginning of the month.  And thought the worse was over.

Appetite returned after losing close to 20 pounds

Slept better

Started to venture out of the house

Started having clay or white colored bowel movements

Towards the end of the month started to get a few stomach issues.

 

April

*I had bad muscle spasms in my back and couldn't stand straight up.  Had a number of cortisone shots.  Pretty sure this sent me back into withdrawals.*

Started getting severe stomach pain and bloating.  Kept me up at night pacing. Couldn't eat solid food.  Lived on protein shakes. Pain moved to my lower left side.  Doctor sent me to hospital for G.I. series to rule out appendicitis.  Ruled out appendicitis but discovered mass in large intestine.  They wanted to admit me and do exploratory surgery.  Very apprehensive about this and they kept offering me benzos even though I told them this was what got me into this mess by doing a cold turkey.  Got the heck out of there against their advice.  Followed up with gastroenterologist.  Put me on two different antibiotics (non fluoroquinolone) after a few more test.

By the end of the month almost all my withdrawal symptoms returned with a few new ones.

Vertigo-Either the room was spinning around me or I felt like I was falling forward even when I was laying down.

Forehead feels super tight mostly on left side.  Feels as though my face is distorted.

Confusion

Gravity effect- don't know what to really call this one.  Laying down I would fell like I was being sucked into the bed, sitting down felt like I was being sucked into the chair, standing up I would fell super heavy.

 

 

 

May

No windows

I know this isn't politically correct but was for sure I made myself retarded.  Anyone who called me I would tell them I was retarded.  Couldn't understand anything I watched on television.

Prayed I would die in my sleep.

I was for sure I would never ever get better and would live forever with protracted withdrawals.

I wanted to reinstate and try tapering.  People on the forum in chat told me I was to far out and it was a bad idea.

 

June

No change except I could eat

Still was for sure I was retarded and would repeat this over and over to anyone who would listen.

Finally towards the end of the month started to get great windows.

 

July

I call this my night and day month.  It seemed as though the past months was just a really bad nightmare.  I knew the worse was over.  The only symptoms that were lingering was a slight tightness in my throat and tinnitus.  The gravity effect was lifting.  I started back slowly doing cardio and lifting weights.

 

August

It just keeps getting better.  Getting days where the tinnitus is gone.  Throat symptoms gone.  Once in awhile a slight boaty feeling.

 

September

The few days here and there when I do get flare ups are a cake walk for me.  I have days where there is no tinnitus.  I consider myself at least 90% healed.  I am actually loving life again.  

 

I had to come back and edit this.  Shortly after writing this symptoms came back and lasted for a few months.  Once I got close to a year off I noticed major improvements.

 

Thanks for posting this.  Do you have any advice for me?

 

Kian

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  • 2 weeks later...

I've just reread some of the replies and amazed how many others out there were floxed.  I just want to remind anyone reading this to never ever take a FLUOROQUINOLONE antibiotic.

 

Below is a link to Adverse effects of these drugs.  The information is good except a bit deceiving when you look at the number of cases.  The numbers shown are for those cases that were reported to Adverse Event Reporting System (AERS) aka MedWatch.  Hospitals and physicians rarely report this information.  I asked a few of my doctors and they didn't even have a clue they were supposed to report this. 

 

Also keep family and friends away from these drugs.  It doesn't matter if you have used a benzo or not, they run a risk of causing serious damage. 

 

http://en.wikipedia.org/wiki/Adverse_effects_of_fluoroquinolones

 

Fluoroquinolones available in the U.S.  Cipro, Levaquin, Factive, Avelox, Noroxin.  These drugs also go by different names so ask your physician or pharmacist.

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Hello Kenneth,

 

Yes, I know far to well about the reactions from fluoroquinolones. :sick:

 

Can't remember if I ever thanked you or not for talking to me while I was in the thick of the reaction symptoms. If not, thank you for all the information about that class of antibiotics.

 

Hope you are well,

Mike

 

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A few members on here have asked me to post what I went though after my cold turkey off 4 mg clonazepam of 10+ years and how I am doing now for encouragement to others.

 

I wish I could have started a journal of my journey but I was way to messed up for a long time.  I want to warn anyone thinking about going cold turkey that it is no way shape or form is it an easy way out. There is a reason why the Ashton manual warns against taking fluoroquinolone antibiotics (Levaquin, Cipro, Avelox etc).  It down regulates the gaba receptors and throws you into withdrawals.  I want to add my own two cents here about these antibiotics.  They can cause some serious side effects of their own whether you're on benzos or not.  I had taken them in the past with no problem.  Each time you take them you are playing russian roulette.  I had some serious tendon ruptures and joint problems due to this class of antibiotics and went through a few surgeries.  If your wondering what floxed is, it's what people call themselves when they get hit by these drugs.  They even have forums.  I also had many CNS problems which I contribute to benzo tolerance for close to a year.  I went to many specialist trying to figure out what was going on with my body and each one was stumped.  They all had my prescription history and not one made the connection.  I finally shared what was going on with a retired physician who lives down the street from me.  The first question after telling him my symptoms was are you on any benzo's?  He had seen the symptoms before and advised me to wean myself off them.  I was stupid and decided I wanted off right then and there and did my cold turkey.  

 

The timeframe may be a bit off.  Basing this off memory.  I'm sure I also have missed other symptoms.

 

So New Years Eve 2009 was my last dose.  The nightmare really began.  

 

 

I was lucky if I got more than 2 or 3 hours of sleep.

I couldn't speak coherently or understand conversations.

Throat and chest felt constricted and had a hard time swallowing or getting a deep breath.

Bladder felt numb.  Hard a hard time starting to urinate and once I finished I would dribble pee for an hour or two.

Tinnitus

Muscle spasms and cramps

Muscle twitching

No appetite

Blurred vision

Rapid heart beat and blood pressure would drop

Sweating non stop and smelt of ammonia.

Huge boils in left armpit

Acne

Coughing up mucus

Limbs felt heavy

 

February

Lived on the couch watching T.V. with heating pad.

The only real change was bladder control returned

 

March

Started getting windows of relief at the beginning of the month.  And thought the worse was over.

Appetite returned after losing close to 20 pounds

Slept better

Started to venture out of the house

Started having clay or white colored bowel movements

Towards the end of the month started to get a few stomach issues.

 

April

*I had bad muscle spasms in my back and couldn't stand straight up.  Had a number of cortisone shots.  Pretty sure this sent me back into withdrawals.*

Started getting severe stomach pain and bloating.  Kept me up at night pacing. Couldn't eat solid food.  Lived on protein shakes. Pain moved to my lower left side.  Doctor sent me to hospital for G.I. series to rule out appendicitis.  Ruled out appendicitis but discovered mass in large intestine.  They wanted to admit me and do exploratory surgery.  Very apprehensive about this and they kept offering me benzos even though I told them this was what got me into this mess by doing a cold turkey.  Got the heck out of there against their advice.  Followed up with gastroenterologist.  Put me on two different antibiotics (non fluoroquinolone) after a few more test.

By the end of the month almost all my withdrawal symptoms returned with a few new ones.

Vertigo-Either the room was spinning around me or I felt like I was falling forward even when I was laying down.

Forehead feels super tight mostly on left side.  Feels as though my face is distorted.

Confusion

Gravity effect- don't know what to really call this one.  Laying down I would fell like I was being sucked into the bed, sitting down felt like I was being sucked into the chair, standing up I would fell super heavy.

 

 

 

May

No windows

I know this isn't politically correct but was for sure I made myself retarded.  Anyone who called me I would tell them I was retarded.  Couldn't understand anything I watched on television.

Prayed I would die in my sleep.

I was for sure I would never ever get better and would live forever with protracted withdrawals.

I wanted to reinstate and try tapering.  People on the forum in chat told me I was to far out and it was a bad idea.

 

June

No change except I could eat

Still was for sure I was retarded and would repeat this over and over to anyone who would listen.

Finally towards the end of the month started to get great windows.

 

July

I call this my night and day month.  It seemed as though the past months was just a really bad nightmare.  I knew the worse was over.  The only symptoms that were lingering was a slight tightness in my throat and tinnitus.  The gravity effect was lifting.  I started back slowly doing cardio and lifting weights.

 

August

It just keeps getting better.  Getting days where the tinnitus is gone.  Throat symptoms gone.  Once in awhile a slight boaty feeling.

 

September

The few days here and there when I do get flare ups are a cake walk for me.  I have days where there is no tinnitus.  I consider myself at least 90% healed.  I am actually loving life again.  

 

I had to come back and edit this.  Shortly after writing this symptoms came back and lasted for a few months.  Once I got close to a year off I noticed major improvements.

 

Sept 1 2011 made 20 months since my CT.  I am completely healed except for a bit of tinnitus that has greatly improved.  Some days it is totally gone.  I'm sure this last symptom will eventually fade away just like the others did.

 

congrats kenneth !!

 

Thanks for coming back and updating your blog. It is so nice to see you healed. You were a big help to me along the way. Before ya know it...I will be healed too. You progress gives me hope. Thanks kenneth

 

chrisw

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Hi Ken

 

Im one of those who got clobbered after taking a fluoroquinolone while on benzos. My symptoms and recovery timeline are very similar to yours. This is not an quick process: healing takes 2 yrs or more for most of similar cases, as i've read on various benzo sites. Hope your healing is now deeper and more permanent. Thanks for posting your story. I'm sure many will be helped and encouraged by it.

 

Kev

 

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  • 2 months later...
Kenneth thanks you for posting your success story. I know you are not on much anymore but your story sounds so much like mine. I, too, feel 'retarded' and have told my daughter that over and over. I was wondering more about that symptom. I have a lot of difficulty speaking now and with that comes almost kindergarten-like thoughts and words. When my speech goes...so does my mind. Nothing I say makes sense. Is this withdrawal or will I soon end up in a mental institution? I have most of all of the other symptoms you could have. I am afraid as everyday now I am like this. In the evening it lets up somewhat (around 8pm) but then it is time to try and settle in. About 4-6 am all heck breaks loose and so starts another day. Thanks again.
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Hope I can catch you Alexa on here.  Someone that had my personal email told me to look at your post.  You will be fine but it's a rough ride for awhile.  I'm sure your daughter knows this is withdrawal. After I finally got my mind back I asked those who I kept telling "I've made myself retarded" how did you put up with me and not just lock me up.  They all have known me for years and said they knew was just part of the withdrawal talking.  Your mind won't just snap back one day.  It's a gradual process that is slow.  You won't even hardly notice it fading.  Just know it does go away.  The last thing you need is to be put in a mental ward and drugged up.  Find a comfortable room and switch on the television and try to focus on it, eat healthy and make sure you get your rest.  Wish I had advice that is more comforting but there is no shortcut.  Hang in there. 
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Kenneth,

THANK YOU for your reply! and thank you to the person who e-mailed you. Your story gives me hope. I fight the worst of symptoms everyday for a year now. 2 wks ago I had iv iron with a dose of steroids and feel as though I have plummeted into oblivion (panic/terror/pacing/rocking). I assume it was the steroids. I am fighting with everything in me. Scared this body will give out before the brain heals (was healthy prior to benzos). The only thing I can do at this point is breathe (which is strangely difficult at times -anxiety/panic?). Yuk..I sound so negative. It's hard to conjure up anything positive in this head. But I do thank God for another day. I sure hope I can post a success story -soon!

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  • 2 weeks later...

Kenneth! So wonderful that you are healed. I have a quinolone history too. It sent me into tolerance and now I am tapering K and it is challenging but, I am determined. We have two little ones that need me back.

 

I had a couple of questions - now that you are healed, can you eat normally, takes supplements, even regular antibiotics? How are you at handling stress?

 

Thanks so much!

 

IAQ

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IAQ  Sorry to hear the quins threw you into tolerance.  It took me many months to figure it out but I was also dealing with tendon ruptures and other gifts from Levaquin. 

 

Eating normally for me is pretty much a clean diet.  Usually tuna, chicken and veggies but I ate this way before.  I have been avoiding supplements lately and tried to stay away from all prescriptions including antibiotics now.  I'm sure one day I will need one but I'll make sure it's not in the fluoroquinolone family.  I'm handling stress well.

 

You will be back for your little ones soon.  Don't rush it. 

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I was floxed too. That's what started my whole ordeal with benzos. I'm scared it's what is causing me to have such a hard time after five months. I was only on benzos three months. The floxing was much worse than benzo w/d but I'm still suffering severe muscle twitching and insomnia.

 

Did you feel your floxing made you not be able to heal?

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Thanks so much for your reply Kenneth. It sounds like you are and have been eating healthy. I was wondering if you noticed any sensitivities to foods, supplements, etc. and if those let up with time?

 

Best wishes,

 

IAQ

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Just a quick hello to IAQ and kenneth as well as the other floxed people. Thanks for posting your successes , Kenneth. I read and reread your story as I struggle through my floxing and subsequent benzo withdrawal.  It gives me hope. I am at 20 months post floxing with no improvement in sight. The best thing I can hope for is that the low dose Ativan is exacerbating everything. I'm doing the best I can to get off of it!

 

Sending continued healing wishes to all.....

Jeanie

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Kenneth - did you suffer from severe anxiety and or dp/dr in your withdrawal? Either from the benzo c/t or effects of levaquin? What remains still from your floxing?

 

Thanks so much!

 

IAQ

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Jeanie...I too had a severe reaction to Levaquin which is in the same family as Cipro back in March of 2008 and was put on Xanax because of the intense anxiety...blood pressure kept spiking...panic attacks...muscle weakness...joints and muscles were on fire and soar...hands were numb...I have not been able to drive since this ordeal for I still have so much weakness and drop things all through out the day. I have been off of Xanax now for 25 months and am still struggling with the whole withdrawal/recovery. I believe your weakness is now the cause of you being on a Benzo they relax your muscles. I have been more weak since coming off of them because my body got physically addicted to Xanax and it takes a long time for the brain receptors to adapt from being off of them. There are days that I still am so weak that I can barely function. I really believe that your weakness is coming from the Benzo...yes Cipro can also cause this but the combo of these two and what it did to your central nervous system can cause so much havoc. I believe in my geart that once my brain and body heal from being off Xanax I will get my strength back in my arms..hands and body it is just a long process. Please keep trying to get off of Benzos because the longer you are on your body gets use to the relaxed feeling and then when you come off it is like your body goes through a big shock to try and get back to normal. I still have the shakes and itchy eyes and skin...anxiety...heart palps....burning sensations...soar and weak muscles...Levaquin and Xanax mimic so much of the same side effects. Hang in there healing does happen but I am still in the thick of it...I just know that people on the site say they have healed and I believe this can happen for all of us with faith and time...take care!!!!!!
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Thanks for writing, putter. I an sorry you are suffering so much. You confirm some of my suspicions. Would you mind letting me know your drug history?  Dosage of levaquin, when you started Xanax, dosage and how long you tapered?  We are all so different, but I would really be interested in knowing your timeline.

 

You might be interested in following a new post by iamquitting. Seems like a good meeting place for 'benzofloxies'. It helps so much to have communication with others as there is very little medical support. Seems like we have to become our own doctors, doesn't it?

 

http://www.benzobuddies.org/forum/index.php?topic=44181.msg601830#msg601830

 

Wishing you continued healing....

Jeanie

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  • 1 month later...
Thank you for poasting. Im also one that has quit Cold Turkey and is going through w/d sx. It is great to hear someone out here that has done what I have. I pray I will continue to better and I pray that you continue to heal. Thank you!
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  • 2 weeks later...

Kenneth....

 

If you are still around can you answer a question for me? When you wrote your success story how far out from the floxing were you?

 

I have severe insomnia and other issues I think are more from the floxing than the benzos.

 

I'm starting to have tendon issues ten months post floxing as well.

 

Thanks,

Jittery

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