FND Sleep Disorder

[Dooley6285]

Does anyone else have this same diagnosis? I was diagnosed 2 years ago.

[Hidden]

Hey Dooley,

I do. I was diagnosed 6 months ago. What are your symptoms you are experiencing? Also, if you have flare ups and remissions, how long are your flare ups? I'm asking and trying to keep a tally of symptoms and length of flare ups for my next neuro appointment.

My symptoms are spasticity, numbness, burning, stinging, soreness in my muscles and joints on the right side of my body. Also vision loss in my right eye that goes in and out. Headaches on the right side of my head in the cluster headache area. Depression, anxiety, and pretty heavy irritability at times. My flare ups last for 3 months and I have had 1 remission so far that last for a month and a half.

I hope you are making it through okay and aren't losing any muscle mass or anything else. Wishing you my best.

Best,

Mr Hatter

[Dooley6285 in reply to Hidden]

Hello Mr_Hatter. My symptoms are very different from yours. I first became symptomatic in May 2018. After many things were ruled out, I was diagnosed in 2021 with FND. What has helped to calm my symptoms is working with a psychologist trained in both hypnosis and cognitive behavioral therapy. We started with hypnosis. The doctor created a tape for me that I play starting when I go to bed. If I awaken, I start the tape again and repeated it throughout the night when needed. It is focused on me being relaxed and talks about going into a deep sleep. It didn't resolve the issues 100%, but it helped me relax more before going to bed. Recently he suggested using a visualization of a happy moment in my life. I go to a dark room and starting rocking, which calms your nervous system. As I rock, I do a deep breathing count of 4-7-8 putting the tip of my tongue behind my upper teeth. As I do this, I start the visualization. Again, not a cure, but has helped me relax about going to sleep. I am going to continue my therapy. I have also just connected with a neurologist who specializes in sleep disorders. She is associated with a research center, so I feel she is up to date on the latest sleep problems. I will be glad to keep you posted on my progress if you think it may help you. Take care, Dooley

[Hidden in reply to Dooley6285]

Hey Dooley,

This is why I believe I was misdiagnosed with FND. I did those therapies and none of it helped me at all. My symptoms are absolutely destroying my life. I can't even stand today. Because of them.

I'm VERY glad these things are helping you get back on track. Extremely happy man! Get back to having a normal life, enjoying life, everything. That is truly incredibly! I am ecstatic for you!

Please do keep me updated on your progress. I wish you the best on your healing.

Best,

Mr Hatter

[Dooley6285 in reply to Hidden]

Dear Mr_Hatter. Thank you for your kind thoughts. I am sorry none of what you tried has been helpful. As I said, none of what I am doing has been a "cure", just giving me a sense of relief in not hating to go to bed. Where do you live? I am in San Antonio, Texas and the neurologist I am referring to, is at Baylor College of Medicine in Houston. My only appointment so far has been a video conference. If you would like more specific information, I would be glad to give it to you. I am like you. I don't have a lot of faith in the FND diagnosis. I don't see a lot of research behind what is being said on the FND website.

[Hidden in reply to Dooley6285]

My dude! I'm originally from Houston Texas! I left a year ago, so no longer there, but hell yeah man!

From my understanding, none of it will be a "cure" but a slow path to a normal life. I do not know though. I hope the Dr from Baylor can help. I know Baylor has some strong Drs there and hopefully they can help my friend.

Keep strong and you keep going. We all are here for you my friend.

Best,

Mr Hatter