*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
In March of 2011, two months after my daughter was born, I was prescribed a flouroquinolone antibiotic called Cipro. I didn’t know that these antibiotics can cause severe adverse reactions that only get worse after you stop taking it and may last for years. In some cases, people can be permanently disabled. I had a very severe central nervous system reaction. These antibiotics attach and block GABA-A from the receptor. What I experienced was what I can only imagine the worst benzo withdrawal symptoms imaginable would be like. These antibiotics are not just dangerous to people on benzos–they can cause this benzo withdrawal reaction to people who have never ever touched a benzo before, like me! Please do not ever take one of these antibiotics if you can help it.
Of course I had no idea what had befallen me, as my worst symptoms appeared a month after I had stopped the antibiotic. I had the worst insomnia a person could imagine. I was unable to sleep for days at a time. When I finally fell asleep, it was only for a few broken hours. The anxiety was so high I could barely function, and I had very severe peripheral neuropathy. I entered into a “5th dimension” where I could just barely function. All the while I had a two month old baby to take care of.
I sought out numerous doctors with no answers. I was finally pushed toward psychiatry, as I believed maybe I had a post-partum issue. I saw a very uncompassionate doctor who started me on my benzo journey. He started me on xanax XR. Within a few weeks I got much, much worse. I was then given ativan. That didn’t work either. I learned about benzos through this site and decided I wanted off. I tried to quit cold turkey and immediately experienced symptoms even worse than what I was already going through. I felt like someone was burning me all over with matches! I knew that my body had already become dependent in just a few months. I saw a new doctor who switched me to Klonopin and had me taper off in three weeks. Bad idea!
For many many months I was unable to sleep more than a few hours a night (on a good night!) I had terrible anxiety, myoclonus, muscle twitching, numbness, tingling, and buzzing sensations, heart arrythmia, shaking, sweating, tempurature issues, thyroid and sugar issues, and many other awful things. I have NO IDEA if all of these things were from benzo withdrawal or from quinolone toxicity. The symptoms are virtually identical. I think most of them were from the toxicity, but no doubt benzo withdrawal made everything so much worse.
Sleep was by far my biggest issue. I was so worn down. Insomnia consumed my life. I was miserable and in despair. I started seeing a sleep psychologist and started sleep restriction therapy. It worked wonders for me! I started sleeping 6, 7, even 8 hours a night! I was still sleeping in the guest room, but it was sleep! I learned how insomnia can start out biological and then morph into a psychological problem that causes it to continue.
In May of this year, I had a huge change. This next part may not sit well with everyone, and I sure hope it doesn’t offend anyone–please, that is not my intention!
I realized that I was being a really negative person. I was obsessing about my condition, being on the forums 24/7, talking about my condition all the time, and being utterly miserable. I decided one day that I was no longer going to let my symptoms consume me. i was going to try to live my life DESPITE what was happening to me. I started exercising, I started praying again, eating healthier, and I discontinued my memberships to the quinolone forum and took a break from benzo buddies for awhile. I started making a real effort to be positive in ALL my thoughts, not just about my symptoms. I literally did a 180. Many of my symptoms virtually disappeared. The anxiety is almost gone! Sleep isn’t perfect but it’s so much better than it was. Insomnia doesn’t scare me like it used to anymore. And the fear of not sleeping, or even the thought of it’s possibility–will keep you from not sleeping! It’s such hard cycle to live with, but it can be broken.
I still have a little peripheral neuropathy but I am confident it will eventually go away. I feel really good during the day now! I thought my situation was hopeless, but it turns out there was a lot of hope for me.
There were some books that really helped me during this journey: The Effortless sleep method (this book is the BIBLE for insomnia!), The power of positive thinking, and the law of attraction. I used to think your thoughts couldn’t make any difference in your health… but they can! They may not fix all of your physical problems but they can cause your brain to make important changes. At the very least, it can help you deal with your symptoms better.
All I know is that I’m so much better than I was–and I was REALLY REALLY bad. My GABA was hit very hard in two ways…and I know it can heal! I can’t say enough about exercise and positive thinking—not just thinking but believing.
Please don’t ever give up. No matter how bad your situation is, and I know there are those of you that had it worse–just don’t give up. I am so sorry each of you are suffering so much. Those memories are still very fresh for me. I haven’t forgotten any of you. I will continue to pray for your healing!
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Hello Sarah! Thank you for your story. The way you look and think is so important and the forums can bring you down for sure. Ive been telling people this and felt like annoying them with my unwillingness to read everything about FQ and every bad story on the net. I dont want to because it scares me and it keeps me from living. And I love to live! Thank you for your story….May your nerves heal completly and may you live a happy and healthly life.
How long did you take it for? So glad you are feeling better!
Sarah- your symptoms are exactly what I have been experiencing after taking Levaquin in Dec. 2013. Some of the anxiety and insomnia have subsided. The one symptom which is truly driving me crazy is the muscle twitching in my legs when I sit or lie down (and occasionally in my arms and back). It was much worse initially and was one of my first symptoms. My ND thinks it is still magnesium deficiency. Did you twitching go away and how long did that take?? Did any specific supplements help the twitching and neuropathy? Thank you for sharing your story!
Hi Sarah! I have noticed the similarities between gaba withdrawal and FQ toxicity, too. So happy to hear about your progress. Did you experience any strange vision symptom with your reaction? Thank you for any help.
I think I am also experiencing GABA issues. Your story helped clarify what is going on with me. Up until now I thought everything hinged on the magnesium deficiency. But what about when you have enough magnesium and are still getting the crazy symptoms, like the insomnia? It’s got to be the GABA issue. My insomnia, luckily, comes and goes and sometimes I even get good, normal sleep. But last night and today I have had temperature issues, insomnia, panic attacks when I try to sleep, tightening of the muscles/tendons around my ankles, a sensation that I am vibrating, a feeling that my skin is burning and my blood pressure was elevated yesterday for awhile. I definitely have autonomic system dysfunction. I was hoping meditation/relaxation would have cured it by now, but I’m only two months in. I’ve been glad that my muscles and tendons weren’t too badly affected, but this constantly being flooded with adrenalin and not being able to sleep or relax is tough to take. Others have seen these symptoms disappear though.
My son is going through exactly what you went thru Sarah Thanks you so much for sharing. He has a long road ahead of him. He has had doctor’s laugh at him when he brought up CIpro.
Thanks Lisa for the reply and care. It is so hard to see a grown man cry, esp when he is your son, from lack of sleep, so exhausted he can’t even think.
Is there anyone out there that my son could talk with? He needs someone that can listen and hear what he is going thru aside from family and medical.
Sarah, your story sounds very similar to mine. I too was hit by the benzo/FQ double-whammy. I was taking clonazepam (ironically enough for sleep problems) when I was prescribed CIpro for a prostate infection. Apparently, the fact that FQs are contraindicated for those taking benzos is just one of the many things doctors don’t know about FQs.
I went through everything you mentioned. My widely varying thyroid and blood glucose tests had my GP scratching his head. I didn’t even bother trying to convince him that it might be due to benzos and/or FQs. 1 year post-benzo and 1 1/2 years post-FQ, I still suffer from insomnia and mild tinnitus. The characteristics of my insomnia keep changing. I went from not being able to get to sleep at all, to falling asleep easily but waking up every few hours–sometimes with anxiety and sometimes not. I guess that’s some sort of progress 😉 I’m seeing another neurologist at the end of the month who is a specialist in sleep disorders and insomnia so I’m hoping he can help (without prescribing benzos!). The other side effects subsided except for some mild tendon pain every now and then when I overdo it in the gym. That could also just be age 😉
How long would you say it took you before you were able to sleep reasonably well?
Sarah posted more about her story here – http://www.hormonesmatter.com/postpartum-fluoroquinolone-toxicity-cipro/
Sarah, how are you now?? are you better with your PN??
Hi Sarah,
I recently was flocked to. I was also taking painkillers and antibiotics. I’m slowly recovering but have developed some scary symptoms. What hurts the most is the thought that I may never have anymore children. I’ve been unable to find any stories of people having children after….
Here’s a article for you to read.
Thank you for sharing your story. It gives me so much hope that you got better. I am a 22 year old who is also 7 months pregnant. I took cipro for a uti that would not go away at about 4 months pregnant. Doctor said it was safe to take after first trimester. I told her I didn’t feel comfortable with it, but she insisted that it was better than having the infection. Had no idea that it could cause these problems. While taking cipro my urinary frequency had increased to where i was feeling the urge to go about every 20 seconds. It was excessive and I assumed the uti didn’t go away but after more cultures the bacteria was gone and these bladder symptoms remain. The urge is intense and frequent. It is better with bladder training now. Two and half months later I am getting sharp shooting pain in my feet, legs, ankles, hands, arms, back, and shoulder. I am extremely weak and anxious. I would be very hopeless and would just stay in bed all day if it wasn’t for my unborn baby. I am worried I’ve gotten cipro poisoning, and am praying I don’t get much worse, but most of all that the baby is alright. I’m going to start taking magnesium and am also going to take a trip to the Progressive Medical Center here in Dallas. Hopefully they can help.
Sarah, I was so happy to see that you decided to make change. I agree, being on the group forums was full of negativity. Like you, I had an epiphany and chose to do something about it. The first thing was to remove myself from the majority of the groups. I did all the research to find out what would work, and kept coming back to the food I am eating.
I searched for that “magic pill.” Eventually, I came to realize that I can’t dwell on what happened, I realized I can change that. What worked for me was a change to organics. That brought the Ulcerative Colitis under control. I developed Afib, but that change to organics, and exercise has made that a non-issue. I still live with pain daily, nothing can change seven tendon tears except exercise and being cautious.
Thanks so much for letting everyone know that change is possible, that we can recover from the damage. I work to make change at the FDA. Not just because of these drugs, but the policies that put these drugs on the market.
I work to change the attitudes of others toward our “Pill attitude” (something hurt? take a pill). Hippocrates said it best – Let they food be thy medicine, and thy medicine be they food. It’s what we’re putting in our bodies that will make a difference.
So what cause your inability to sleep is your anxiety and depression from, not the damage to your thalamus and CNS like my case. That is why you can get off the benzo and able to sleep without drugs after seeing psychologist.
You are fortunate that you are able to deal with the toxicity. My husband had all of the same. He started seeing a psychiatrist and a week later took his life. The doctors were clueless. Don’t stop fighting!!
Hi Sarah
Thank yoh for writing this hopeful story. I want to ask you what type of sugar problems did you have? Was your sugar readings high? My sugar levels are a but high but everything else if normal. But I was informed that been anemic also plays an important factor in those readings.
Thank you
Hi. I had osteomylitis of the pelvis after a prostate cancer operation was botched.
I had a six weeks course of the strongest Cipro available . I had insomnia for three months and ever since had disturbed nights and pain in the thighs. When my bladder seized up I was given a supersonic catheter but several infection later, treated not by Cipro bit another antibiotic , I often find myself exhausted.
Ciprofloxacin saved my life but I am left with permanent after effects, even 5 years later.
Dear Sarah
you wrote your story some time back but it is the candle of light to patients suffering from Cipro induced insomnia. I have been prescribe Cipro twice in a month time due to recurring diarrhea. Now I’m in terrible position of lack of sleep. Kindly guide me with the your method of sleep induction.
wishing you the best