Josephine: Prolonged Antidepressant Withdrawal Syndrome after 24 years

[Josephine]

I am new to this forum and wondering if anyone else has experienced prolonged withdrawal symptoms. I was put on  20mg Fluoxetine (Prozac) back in 1997 or so. I was prescribed this medication because I had trouble sleeping. This was at a time of increased stress when my young daughter was going through chemotherapy. I did not want this medication but was told that I needed to be treated for the stress. I would be monitored by lab testing to prove I was taking the drug , or lose medical insurance benefits. After taking one dose, I felt awful. I became jittery and started to feel anxious. My GP told me that this drug had absolutely NO side effects and that what I was experiencing was, in fact, my reaction to being under stress. He told me to take it at night to help me sleep. I felt like I was going out of my mind. I was so worked up that I asked to go to the emergency department. They gave me IV fluids. I said this drug is killing me. No one  believed me.

 

I made several more trips to the ER department with worsening side effects.I was treated for dehydration and sent home. I saw a psychiatrist at the Toronto Sick Children's Hospital where my daughter was being treated for Leukaemia. The psychiatrist emphatically told me and showed me his computer screen that fluoxetine had NO side effects. He said that the problem was entirely mine.  I now weighed less than 90 pounds and was a shaking nervous wreak. I spoke to a pharmacist and explained my symptoms. He told me to get off the drug, but also cautioned me that he could lose his job for telling me that. He said it was terrible stuff and to get off of it. He also told me that it would be a horrible experience. I only took 11 pills…. That’s it! My life was changed forever! After the last dose that I took, I broke out in a high sweat, vomiting, and screaming to keep my mind. Thankfully, I was with a friend who drove me to the hospital. By the time he got me there, I was unconscious. I had full on serotonin syndrome. I have no idea what happened after that, but I woke up in intensive care. I was in one hospital and my daughter in another one. 

 

I quit that drug immediately and assumed that my problems would be over. Not so!  My body was under siege for another several months during which time I had to figure out which foods would raise serotonin naturally and removed them from my diet. It got so that I was afraid to eat at all. This also contributed to my weight loss. I went down to about 80 pounds. I was a walking skeleton. 

 At the same time, this single mum was trying to keep it together for my daughter who was fighting for her life. This drug robbed me of everything at a very crucial time. I thought that the fluoxetine would be out of my system soon and the nightmare would be over. Not so!  Things got even worse. I remember praying through the bouts of suicidal thoughts, night terrors, panic attacks out of nowhere, tremors, speech difficulties, ataxia, insomnia, nausea ,headaches and tremendous pain and now being afraid to eat.

 

Next came a new set of challenges... any drug that I was prescribed after the fluoxetine no matter what for, put me out of my mind and the same symptoms returned: akathesia, tremors, panic attacks,muscle jerking, feverish ,sweating...all heading towards milder serotonin syndrome.  Now I couldn’t have any pain meds, antibiotics, vitamins, tylenol, or any  freezing at the dentist.This was more than a  nightmare! I got pneumonia several times and couldn't take any medication for it.  I became ultra sensitive to hand creams, lotions, air fresheners, laundry detergent and perfumes. My eyesight deteriorated, my body ached with pain, my breathing was affected, my heart raced, I had uncontrollable tremors, my muscles ached, my head hurt,brain had electrical zaps and shocks, uncontrollable sweating, and now I was gaining weight. Remember the 80 pounds? My weight doubled! On a 5 ft frame, that is brutal!  What I didn't realize was that I was still reacting to medications that interacted with fluoxetine or medications that raised serotonin. It took me years to figure this out. No one in the medical profession had any time to listen. No one cared. 

 

If this wasn't enough, as time went on, my body broke down even further. The ataxia became more evident and didn't resolve with rest. It became impossible to control my tongue and facial muscles and my body twisted out of shape. My legs were restless and I lost my ability to walk and talk properly. I became really weak. After another long battle with medical people, I was finally diagnosed with generalized dystonia and offered a wheelchair. On top of that, I was diagnosed with cluster headaches. The headaches were so bad that I resorted to packing my head in ice.  I got a prescription for oxygen to help with that. At this point, I had no choice but to quit my job. 

 

 I was in bed nearly 80% of the time because I just couldn't function either with the pain or because I couldn't get my body to move. All of the tests that I had done revealed absolutely nothing. A botched spinal tap left me with a cerebral spinal leak for nearly four months. This also left me partially deaf and with a loss of range of vision. After all of that, it revealed nothing! Every doctor I saw, I told the same story... that  all of this happened after I took the fluoxetine.  They all said that it was impossible. I was subjected to countless lab tests , MRI's, CT scans, sent to specialists, specialty clinics, neurologists, spinal taps... nothing showed. My symptoms were dismissed. 

 

I started a really wholesome diet and tried on my own to keep my body working with massage therapy, chiropractic and physio. I had to fight for the right to do that. I needed a doctor slip and they refused to “entertain my game”. I went without sick leave, because the doctor refused to sign my paperwork. Said that after I went bankrupt, I would go back to work and give up the wheelchair act! I lived on Visa for another year…. And took in boarders. 

 

I spent the rest of my time devoted to  research; SSRI’s, the brain, and anything I could find on SSRI side effects.Very little could be found. I researched everything down to the molecular level  including pharmacogenetics, pharmacokinetics, biochemistry, you name it!  No one knew anything about this! No papers published on it. I knew that there were more people who had been through what I had been through. Maybe all of the people who had serotonin syndrome died? Or committed suicide? Surely, this wasn’t my punishment for surviving this hell on earth. 

 

I paid for a pharmacogenetic DNA  test in the USA just to prove that there was such a thing as drug sensitivity here in Canada.  I also wanted to know how my body metabolized drugs, namely fluoxetine.When the same testing became available in Canada, I paid for a second DNA test for pharmacogenetics.  This was done in 2019. I now had some kind of tangible proof of drug sensitivity. So far this is my only hope to prove that something is wrong with my system. I got a medic alert bracelet to caution prescribing drugs in the unfortunate event that I may be unconscious and not able to advocate for myself.I want to stay alive. 

 

Let’s realize the timeline. It is now 2021 and this has been my journey. It has been 24 years since my hell began. After a lot of hard work, and some recovery, I have been able to get out of the wheelchair in 2019. The dystonia and tardive dyskinesia are less pronounced and the headaches have lessened. I still experience brain zaps.  I am still not able to take any medication. I was sent for a CT scan in 2019 and reacted to the dye. I had a scope done in early 2020  and reacted violently to the lidocaine. I had tremors and serotonin syndrome like effects lasting more than 7 days. Last month, I had to take ventolin for a breathing test which also made me sick. I told the technician  over and over that I could not take that drug. He needed to see for himself. Again, I get to be the guinea pig to prove how awful this is.  My heart pounded and raced so bad that I thought I was going to have a heart attack. My chest nearly exploded with pain that was shooting down my arm and  up into my jaw. It made my breathing erratic and I was in obvious distress. I know that this greatly alarmed the technician,  but the  ignored this and send me home. Just get rid of the patient!All of the old familiar symptoms returned and lasted for another 7 days or so. I am so disheartened! 

 

 Thinking enough time had passed, I tried some alternative therapy last January. This therapy was to work on electrical impulses in the body and meant to help with the pain. It did help with pain but it also riled up the same old symptoms. Here I am again suffering the same side effects as if I were on fluoxetine. So far, two months of side effects that just showed up out of nowhere. Heart racing, akathesia, tremors, watching my food again, anxiety, and insomnia. Pure hell.. Does this ever end? The last 24 years have been the worst years of my life. Can anyone shed some light? I am looking for some kind of documentation or published paper that long term side effects do exist. I want to put it in with my medical records. I also want to find a way to get better, naturally. May God’s grace find the way for me and many others.   

Edited February 16, 2021 by manymoretodays

[manymoretodays]

Hi Josephine,

And welcome aboard.

And yes, we've had many members with prolonged protracted withdrawal syndrome.  Unfortunately.

And also many with increased sensitivities.

Ugh.

And oh my.  It sounds like you've really had it rough.  I'm so sorry.

 

I do want to get you approved and started today.

So am just going to ask for this right now:  Please summarize your withdrawal history in your signature

That will then appear below your posts and give a better timeline, and tapering or WD history at a glance.  Just click on the underlined link, and it will explain it some more, and how to do a signature.

 

You've given a good overview of things tried, and some of the symptoms that you've endured in your narrative above.

In the signature, just list the drugs, and dates, doses, and how tapered off, and dates again.

You'll see.

 

And best,

Love, peace, healing, and growth,

moderator manymoretodays

[Gurgle]

Hi Josephine. Sorry to hear this hell. I have become very chemically and food sensitive too since withdrawal ( 2 years). Can't write as not in good place at mo. Have you looked into histamine intolerance? Perhaps it's epigenetic?  GST/GPX detox genes- see Dr Ben lynch