Meena’s Path Through POTS & Recovery

Thanks so much for sharing the Fluoroquinolone reaction chart and for your whole website which has been such a resource and inspiration for myself and my daughter over the past nine years. I have been “meaning to write” for such a long time, especially to add some more to the reaction chart on the right side of autonomic nervous system effects, as my daughter Meena has finally settled on Postural Orthostatic Tachycardia Syndrome (POTS) as being the closest to explaining her symptoms and the only way she can let people who respond to her “falls” understand that it is not life threatening and that she can just rest awhile and get up. Thankfully, she has almost recovered from this symptom of being floxed and has had only rare “falls” in the past few years. The picture is of her walking to her graduation with a Master’s Degree in Public Health.

Confirming the genetic nature of FQ reactions, ciprofloxacin lowered white cells in my mother when she was 80 years old, raised fever in one of my daughters (age 25) hospitalized for diarrhea (we had to check her out of the hospital to stop the drug), and raised fever and increased coughing in my second daughter having an episode of upper respiratory infection when she was 11 years old.

Years later in January 2012 when this second daughter (Meena) was 21 years old and in her last year of medical school, she was prescribed Levaquin for bronchitis – a low fever and cough. She had told the doctor, her professor in medical school, about her allergy/reaction to ciprofloxacin, but the pulmonologist insisted there was no such thing as an allergy to the FQs, and that this antibiotic would help clear the infection faster so she could return to her call on the wards. Soon after taking her second dose of Levaquin, she collapsed in the hospital and was not able to move. Some colleagues put her in a wheelchair and took her to the Emergency Department (ED). Hooked up to monitoring machines, on a stretcher in the ED, doctors focused on her fast breathing, fast pulse, and rising temperature. They called the pulmonologist who came and examined her lungs and said it was not an allergic reaction, but he could not explain the hyperventilation and he admitted her for one night in the hospital for observation. Somehow he completely missed her weakness. My daughter described her first days:

“The docs attributed everything to an asthma exacerbation and didn’t accept that I was too weak to walk when they discharged me home the next day. I had to be carried up the stairs of my apartment and laid in bed for 2 days – too weak to move on my own – while my mother relentlessly searched for answers to my weakness. In 2012, the only “black box” info on the floxaquins was that they might unmask myasthenia gravis (MG) symptoms or make them worse in an MG patient, so we finally decided I had to see a neurologist.

“After a lot of effort and help I was put in the car but the first neurologists we tried to see all had their clinics up two flights of stairs with NO elevators available, (well it is a developing country after all). So we went back to the hospital clinic and tried to see any neurologist we could find.. By this time, I was exhausted and could barely hold my head up in the wheelchair. The neurologist asked if I was sad or felt like crying, when I replied “no”, he said “ok, let me see you try to stand up”. I tried pushing myself up but couldn’t make it and slumped back into the chair, frustrated with myself. “See, you are upset and I can tell you’re about to cry.” I replied, “Yes! I’m upset that you think I’m depressed while I’m weak and can’t stand.” Even after my mother insisted that he do a neurological exam, he refused and told her that he had seen this before and it was Levofloxacin-induced depression. Thankfully, my dear mother did not believe him, but the incident made me doubt myself and my symptoms. I kept asking myself, “Am I really weak or just not trying hard enough?”

“Meanwhile, my classmates and friends were working to find the contact information for one of the most renowned neurologists in the country and convinced my mother to call and talk to him about my case. He sounded very concerned and after finding out that we lived one block away (what are the chances), asked my mother to bring me to his house so he could examine me. I was extremely weak by the time we got there, and he saw my friends trying to help me stand and walk up his driveway. He came out and told them to put me back in the car and go to the ED again and that he would follow us there.

“The second time in the ED now, we seemed to get a lot more attention for coming in with this renowned neurologist. He did a full neuro examination and diagnosed me as a case of drug-induced neuromuscular blockade (myasthenia). He ordered tests and put me on pyridostigmine 60 mg three times a day and 3 days of high-dose IV steroids. I was in the hospital for another three nights until I was able to stand on my own and walk to the bathroom.

“By this time, I had missed an extensive amount of classes and on-call nights, and was terribly behind. Because of a 75% minimum attendance rule, I had to find a way to attend – even if it was in a wheelchair some days or walking with the help of my friends.

“About 8 weeks since the first episode I had to increase the pyridostigmine 60mg to 5 times a day (every 4 hours) and was still very weak. I had more episodes of weakness and slumping to the floor and had to be taken home in a wheelchair another day. All my tests came back negative – the nerve conduction and repetitive nerve stimulation as well as the anticholinesterase antibodies. The neurologist said that if it was drug-induced myasthenia only, it should have gotten better by now. He sent me to cardiology for a workup to make sure I wasn’t having the episodes due to blood pressure or arrhythmias. Everything came back completely normal with my heart, except I couldn’t complete the tilt-table test for postural hypotension because I got unbearably weak after 20 minutes of standing (even though I was attached to the table).

“I had to change my lifestyle significantly. At the hospital, I made sure I only used the stairs once a day and planned out the paths I took so I didn’t have to walk that far. I walked very slowly and took breaks in-between. I learned to stop before I collapse. However, all of this put a significant toll on my last year as a medical student. Before this, I used to be full of life and ran around the hospital trying to see as many patients as possible, taking full advantage of all the opportunities I had.”

The illness was so mysterious that all the tests were normal but still the symptoms persisted. During a fall episode, or “collapse” as she called it, she would be awake but could barely move or talk. Then in a few minutes or sometimes a few hours she would be “normal” again. She would also get fatigued extremely quickly. Initially, even lifting the spoon to her mouth would tire her. Later any exercise like walking or standing would make her feel weak, and she would need to sit down. It was not the same as getting short of breath or “being out of shape” but seemed like the muscle resources were used up and needed to build up again. When she lost sleep due to her heavy schedule, she would be worse, and sometimes she would sleep heavily in the middle of the day. She also reported: “When I have my period, my symptoms of weakness get a lot worse and I usually won’t be able to get out bed most of the day. I get blurred vision in the evenings and have a hard time reading my textbooks. Sometimes this happens in the morning as well. I also have tons and tons of twitches. Sometimes I feel them, like when they are around my eyes, but sometimes I just see them when I look at my arms or legs and the skin is twitching. I also feel like I have slurred speech after a long day and it takes a lot more effort to get the right words out.”

Eleven months after she was floxed, she thought she had control of her falls, but she collapsed in the hallway on the way to her final medical exam and again had to be taken to the ED, while being worried that she would have to repeat her last year of medical school if she didn’t make it to the exam. Although late for the exam and too weak to write the answers, her professor allowed her to come in a wheelchair (barely sitting up), while a junior student read the questions to her and wrote the answers she orally dictated.

During the year, we took her to the best specialists we could find –a University Hospital specializing in Neurology and to a renowned private Clinic. The first place did tests that showed that she did not have MG and they said maybe it was “deconditioning,” i.e. she was weak from not exercising. The second did autonomic tests and sleep tests which she passed, but on examining her results later, we found out she had just missed the cut off point for Postural Orthostatic Tachycardia Syndrome (POTS) by one heartbeat. Again, the doctors suggested it was “deconditioning” – that she was weak from being in bed too long. This of course was discouraging because it meant they did not believe that the weakness was worst in the beginning of the illness and had improved from then, and it didn’t explain her “collapses”.

However, through Floxie Hope and support from family and friends, she found the courage to continue with her studies and with a very busy lifestyle. She always thanked God that the weakness was not associated with pain.

She took Pyridostigmine as prescribed by the neurologist for “neuromuscular blockade” for about one year. Sometimes she felt it helped her weakness and sometimes she was not sure. Notably, Pyridostigmine is sometimes used in cases of POTS as well. She took supplements and herbs recommended by various sources. Besides Vitamins B Complex, C and D3, Zinc and Magnesium, she felt Pantothenic Acid (B5) and B12 were especially useful for her, and she felt better when she was taking them consistently.

From 2013-2015 she continued to have falls every 1-3 months until, finally after a two-week vacation in California by the ocean, she had no further falls until mid-2016 when she thought she was having a relapse. The relapse lasted just a few months. Again, I went to Floxie Hope and found that relapse is possible and is also overcome by time. She finished medical school and got married and although she was not able to continue on in clinical medicine due to the rigorous requirements of residency, she found other ways to use her medical degree through working in research, getting a Masters’ in Public Health, teaching public health to undergraduates, and she is now finishing her PhD.

To deal with the symptoms of POTS, she changed her lifestyle to avoid standing as much as possible. Taking a shower still wears her out for half a day, and she always sits down to think or talk as she says her brain doesn’t work well when standing. After a lot of trial and patience, she found that increasing fluid and salt intake, wearing compression stockings, and having regular exercise and sleep tend to help. . One of the challenges was figuring out how to exercise when she was so already so weak. She started very slowly with stretching and moving while laying down to gain strength. Eventually she started going on walks, but always made sure to take someone with her. About four years after being floxed, she distinctly remembers the first day she was able to achieve her goal of walking across the local river bridge (1.5 mile roundtrip) without feeling weak. Since then, she has found that bicycling has been her preferred exercise since the sitting position allows her to go further distances without feeling as weak as she would walking or running.

As others with such experiences understand, it can be especially challenging to find the right way to explain your illness or episodes to others. When she moved to a new city in 2014, she had a relapse of weakness, collapsing in her office, and the ambulance was called to take her to the ER. She could barely talk but tried to tell them she had POTS. They looked up Pott’s in their book and thought she had a rare form of TB! Luckily, her husband wasn’t too far away, and he came to explain things better.

POTS is a newly recognized diagnosis and even now not all doctors recognize it. At the same time, some doctors may label it as “functional”, i.e. related to emotional or mental health. However, there are websites representing a large international community of people with POTS, They have even developed wrist bands that give the diagnosis so that their illness can be recognized even if they cannot talk. Below are two links that really helped to validate the symptoms for my daughter when they were often not recognized by others as “real”:
http://www.dysautonomiainternational.org/page.php?ID=30
https://www.potsuk.org/

Knowing how I searched the internet for possible side effects from FQs or any support to face the doctors who accused her of faking it or not trying to exercise, I wanted to add this story to put up dysautonomia and POTS-like symptoms as a side-effect. I want to confirm to others that, “yes,” weakness and collapsing for no reason can be one result of being floxed, and “yes” you will most likely get mostly better after time, and please avoid these drugs for yourself and your family.

** 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.

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