My name is Tris Ann Gaydos. I am a wife and mother of two sons. In November of 2014 at the age of 46, I was Diagnosed with Cervical Dystonia.
I have created this blog to share my journey with Cervical Dystonia and a later diagnosis of Oral Dystonia (Meige's Syndrome) as well.
I made the decision to take a non-traditional approach to my healing by using Functional Neurology along with traditional medicine and wanted to share my story.
Discussed PTSD & trauma, childbirth and the immune system, stretching neck muscles is bad- confuses the brain and makes dystonia worse. Physical therapy after dystonia goes away, medications OK for sleep.
Monday night my left hip hurt and neck pulling as usual.
Had a hard time falling asleep pain and head tremors. Left leg and glute pain.
Woke up on day 3 feeling twisted and sore. Saw improved eye movement after a second test to make sure we are on the right path.
After treatment felt OK then had really bad dystonic posturing and pulling that evening. Diagnostics showed improvement so we are on right path. Tremors were bad and hard to eat. Muscles felt tight and sore.
I felt better throughout the day. I was able to turn my head to the left easier for an hour or two. Still have head neck pulling tremors not as bad during the day but I had a hard time falling asleep- overthinking...felt wired.
Feeling better as far as head pulling. Did testing in the morning and went over the results at 2:00. Saw significant improvement! I’m so glad my husband was with me to see the results and have them explained so clearly by Dr. Antonucci. My pain is not as intense. I had two more treatments and exit review with Dr. Antonucci. Left the Center at 6:00pm and drove to Cocoa beach and was wired. Went to dinner late and I was feeling woozy. We definitely overdid it. Did not fall asleep until 3 am. I think I was anxious and overtired and the hotel bed and room was horrible. The car ride was not as bad as usual. I am also noticing more I have control over my emotions. Pain 5 out of 10.
I was sooo tired from lack of sleep but went to the beach with Micha and the pain was not so bad. My head feels wobbly and shaky. Went to new hotel close to the airport. Found a lovely Italian restaurant and had a relaxing lunch and day. The car ride was ok....pain on left side of neck shoulder and upper arm. I was able to swim a bit with Micha and I slept well in the new hotel room. Pain 5 out of 10.
I woke up groggy and tired. Headache on right side and pain on left side of neck still. Flying home today. The flight was rough for me. I had a bad headache on my right temple. Not sure if it is my usual PMS headache or from the treatment/trip and the pain got more intense in my neck and shoulders...also felt very nauseous. Got home and was able to rest but headache and pain all day. Pain 9 out of 10.
Had to take one ambien last night because my tremors were bad and my head hurt. Woke up still feeling headache and pain but now on right side only. Feel exhausted. Tried to do falling tree. Eyes pooped out after 3x. Every time the right eye started to water. Pain 8 out of 10
Woke up feeling a little better. Lingering headache but not nearly as severe. I got my period so that explains why I felt terrible the past few days. It's crazy how bad my dystonia flares up with pms. My insomnia is worse, pain and muscle tension is worse during those days. I usually end up taking an ambien once or twice a month on those days.
The pulling on my neck was bad all day especially walking to pick up Micha. I feel like a broken -robot/bobble-head. Pain 7 out of 10.
I woke up feeling very sore on the right side of my neck and very tight pulling-chin to shoulder on right side when walking. Also had pain in right calf. Went to grocery store with Mike and the ride was not as bad as before and last night watched some of the hockey game and it did not make me as crazy as it usually does to watch TV. I also have noticed I have more control over my emotions these past few days. Things that I would normally start crying uncontrollably over are now tolerable. I was able to work in the garden for an hour and I washed our sheets. The only exercises I am doing at this point are the rolling log and Falling tree. I am still waiting on an email with the LB exercises on the ottoman and the specs for the bicycle wheel or a video. In the evening the head to shoulder was getting worse. Did yoga this morning and walked to pick Micha up at school. Pain 5 out of 10
Woke up feeling a little better. Worked on compiling this daily journal/log this morning. The eye exercises went well, but my right shoulder keeps popping up to my chin, especially when I am walking. Even now as I am typing it is happening. The back of my neck is very tight and sore/right side. Today I did yoga for 20 minutes, rode my bike for 20 minutes and also walked to pick up Micha at school. Came home and made dinner and now getting MIcha his shower. I do a lot and fight through the pain. I’m exhausted yet I have a hard time falling asleep. This is an average day. Pain 5 out of 10
Slept very well last night. I still have the tugging and pulling- right shoulder to chin. It feels very tight and tense yet the pain is not as bad. Ordered parts for the rotator exercise. Still having trouble walking and head bobbly- wobbly. Did 20 minutes of yoga and had my sister-in-law over for company. Pain 5 out of 10
Rough day. The pulling and corkscrew feeling was very strong starting in the afternoon. Morning exercises went well but later I felt the tugging and pulling starting on my way up from the falling tree exercise. I'm trying to be mindful but when I start to feel the pulling it affects my breathing and anxiety levels. I went outside to do yoga and knit but still felt wonky. Its either chin to shoulder or head being pulled backwards pain was a 7 out of 10.
Woke up feeling pulling and pain on right side. Corkscrew feeling from my neck down to my lower back. Right shoulder is popping up to chin. It's hard not to get anxious when this happens. Trying to be mindful. The car ride today was back to my usual twisting and head turning and the pain and pulling lasted all day. Tension in my upper arms and neck.