Fighting for Life & Love: My Experience with Akathesia
By Guest Blogger Amie Havens
I am a 45 year old woman, residing in Winston-Salem, with an amazing husband, and two wonderful stepchildren. Starting around September of last year, my life would take a dramatic turn for the worse. Little did I know at the time for the next nine months I would endure one of the toughest challenges of my life, the fight to stay alive and love life again.
I remember things starting to change around October of last year. I had left my job of the past 13 years to try something new. I wanted a new challenge and thought this job was the perfect fit. Soon after starting the new job, my anxiety rose to levels I had never experienced before. To try and help with the anxiety, I went to see a local doctor.
Over the next 6 months, I was prescribed a series of different medications to help control my anxiety and resulting depression. Shortly after taking the new medication, I began experiencing debilitating and torturous side effects which included a subjective feeling of inner restlessness that did not allow me to sit still. I spent the next six months sleeping 1-2 hours day, and when awake, walking and pacing around my house constantly day and night. I lost 20 lbs., my speech was slurred, my skin was pale, and my hair was breaking off and falling out. I was unable to handle a simple task like paying a bill, fixing a meal, or going to the grocery store. I went from being an independent woman with a successful career, vibrant social life, and a loving relationship to not being able to work, socialize with my friends and family or engage with my husband. I was now housebound and dependent on others for everything. I knew something was drastically wrong. The cure I was being prescribed to combat anxiety was worse than the initial anxiety that caused me to see a doctor.
For the next 4-5 months I began to consult with various doctors and describe what I was experiencing. I told them I felt very strongly that these medicines were causing these side effects, but unfortunately, they did not agree. The advice was to increase my dose and stay on the current medicines. I continued to take the medicine as prescribed and things continued to get worse. I felt defeated and couldn’t continue to live like this. I contemplated taking my own life.
And then finally there was some hope. After many months of research, my sister was able to shed some light on what may be wrong with me. She had discovered online a condition called Akathisia. Akathisia causes a feeling of muscle quivering, restlessness, and the inability to sit still, and is caused by a reaction to certain medicines used to treat anxiety, depression, and bi-polar disorder. Other symptoms include crossing and uncrossing the legs, fidgeting, foot or finger tapping, marching in place, pacing, rocking, shifting weight from one leg to another. It often goes unrecognized and is associated with an increase in suicidal thoughts. Bruce Springsteen, of rock-n-roll fame, had Akathisia and describes it perfectly in this article.
Armed with this new information, I began to search for a new doctor that was willing to listen to me and understood this condition. She was able to put me on a series of medicines to that began to reverse the Akathisia. After about 3-4 months, I began to see an improvement. A year later the Akathisia is completely gone, and I am back to normal. I love life again!
Since this condition often goes undiagnosed, I decided to share my story to bring awareness to Akathisia. If you or someone you know are experiencing these symptoms talk to your doctor. There is light at the end of the tunnel.
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Please let me know who helped you. I have just moved to the Charlotte, NC area and am in DIRE need of help with akathisia from different antidepressant meds. I don’t know who to turn to and I found your blog while searching for help.
Wow I had been given abilify around 15 years ago and I had this inside feeling that I just didn’t want to stop moving but it wasn’t a pleasant one. I stopped taking it after about 2 weeks. I’m glad I did. I’ve mentioned it to doctors here and there but none ever told me that’s what it was. They just looked at me like yeah ok.
I would like to share my experience with akathisia and what I have done to beat it. I hope that can help anyone reading your website who has this debilitating condition. There is hope, I truly believe it. I suffered tremendously and I beat it, its been gone 3 years now. Sending my best wishes for the full recovery to all the people around the world that suffer from akathisia and have no way out. There is a way out. Please read my blog post for all the information about what you can do to beat akathisia. I beat it without medication. Wishing all a good health and a happy life without akathisia.
https://howibeatakathisia.blogspot.com/
I received Compazine once via Iv for a migraine and am two weeks into akathisia can it get better without any meds
Thank you for this story! I had been on Zoloft for anxiety for years but was having some muscle pains. They thought maybe the zoloft was the cause so it was switched to Prozac . I was on it for awhile with a hyped up feeling then suddenly developed debilitating “anxiety” I couldn’t describe it other than torture and inability to concentrate or sit still. After 7 months I was finally diagnosed with Akathisia. I am still having many symptoms and everything else online seems very hopeless ( as to recovery). Thank you for sharing your story it gave me hope
Unfortunately, the Cymbalta you are now taking can stop working at any time (happened to me) and then you will have to wean off…which can also cause Akathisia. Its a vicious cycle with no real cure.
I’m experiencing akathisia from antibiotics. I would love to know what worked for Amie or anyone reading this. Please email me at robbiemeanswell@yahoo.com. I’d really appreciate it. Love to all.
Aimee, I, too, am suffering from akathisia. Like some of the others who responded and who also suffer from this agony, I was hoping you could share the medications the doctor used to help you heal. I was also wondering if you could give me the doctor’s name. I long to have my life back. This has been devastating for my family, too, which also breaks my heart. I am happy you were able to heal, and I will pray for healing for those who posted and are still suffering.
Katie, I too am suffering if you ever want to reach out so we can support each other my email is chelseajordanreiss@gmail.com
Hi Katie, I am so sorry to hear you are going through this. I know you will get better. I took beta blockers and gabapentin. I also switched to duloxetine for my depression which didn’t cause the akethesia..
Keep in mind it did take me 6-9 months to get better so have some patience. The beta blocker and gabapentin reversed the akethesia for me over several months but the key is to stop taking the medicine that is causing it. It may take trying a few different meds.
I also made myself walk twice a day no matter how much I wanted to stay in bed. I meditated and switched to a diet that eliminated alcohol, sugars and processed foods. Lots of fish and proteins with vegetables.
My doctor is in Charlotte NC and her link is https://doctor.webmd.com/doctor/saidat-akande-c87a8a2c-f97b-4b69-8073-4362b2637c9a-overview
I wish you well on your journey. I am living proof that you will not stay like this forever. Please feel free to email me if you have any questions. Afprimm1@gmail.com
Definitely would like to know the series of medication that reversed the Akathisia
Aimee can you please email me because I am experiencing akathisia myself what helped you get better? I’m in pure agony
Thank you, Amie, for sharing your story, shedding light on this condition and what can be done! I’ll be looking further into it since someone else i know is exhibiting similar signs.
Wow – such an interesting story and am so glad you were able to get it diagnosed and treated. I have never heard of this either, and I’m sure that was a scary year for you. Thanks for shedding light on this topic for others! Stay well 😉