Wednesday, April 11, 2018

The Vagus and Cranial Nerves

After my last trip to see Dr. Farias for the oromandibular dystonia workshop he was teaching us how regulation of the vagus nerve through diet (reducing inflammation), stress management, and exercise is crucial to healing and reducing symptoms.

I am a very visual person and needed to find some images and videos that touched on what he was trying to explain. Here are a few that I found that were very helpful.  Before I was diagnosed I had so many symptoms that doctors could not find any cause. My left ear would turn bright red and get hot and it would feel full or clogged. It would also ring sometimes. Looking at this anatomical schema visually helps me put the puzzle together. 

Interesting article- Vagus nerve

Monday, March 5, 2018

Neck and Head Pain. The pain is real and you are NOT crazy.

I was trying to find articles and information on how to explain where my pain was for my most recent Botox injections and stumbled upon this 2009 blog post. "Pain in the Head and Neck". 

This article helped me understand how the muscles work together in a very straightforward and simple way. I also am a very visual person, so the drawings provided in the post help as well. I can definitely relate to the quote, "The pain is not real. YOU are just crazy."  If I had a nickel for every doctor I have seen over the past 20 years and how I was told that there was NOTHING wrong with me and I walked away feeling deflated and completely nuts....I'm sure many of you can relate. I hope this article helps.


Saturday, February 3, 2018

January Update...Three Days Late!

Well...Old man winter has not been kind this year. It has been so cold and bleak here that I feel the winter blues have officially set in. I still do my eye exercises and therapy every day at least twice and sometimes three times. I've been trying to get back to practicing yoga 20 minutes a day as well to get ready for cardio again. I really love this YouTube channel (Cole Chance) for my yoga practice.  They average 20-30 minutes and there are a lot of basic poses that are accessible for my cervical dystonia. If I try something that is too difficult then I get upset and frustrated and want to quit. It's better to stick with poses I can do (even if they seem too simple) to create a sense of accomplishment. The third week of January my husband and I decided to get out of the cold and we booked a week in Florida on the gulf coast. We took our 8 year-old for a week of sunshine and felt the sugary sand in our toes. It was the first trip I have taken in over three years that was not medically necessary. It was nice to see my husband and son have a good time and relax. This whole journey has been difficult on everyone and it was a much needed break from everything. The day after we got back from our trip it was Botox day. I tried 250 units instead of my usual 200. I am anxious about this, but I figured it was worth a try. I'm praying my head does not flop. When it does, it is when I am eating or brushing my teeth. I'm hoping all of the exercises and and eye therapy are kicking in and it won'be too bad.

My son in front of the beautiful Don Cesar Hotel. (and no, we did not stay there...) I love architecture and this grand building is such a gem.

Saturday, December 30, 2017

December Update...

Related image

Well, the holidays have come and gone. I am hoping that I can have a fresh start in 2018. I suppose that is what we all hope for.

The positives are that I am driving again and getting out more. Having some independence back is HUGE! I can make small trips to the store and take some of the burden off of my husband which is saving our marriage and our sanity. I'm still seeing Dr. Kukurin once a month to monitor my progress. I have less pain and feel like all of the hard work is finally paying off. The pain that I do have seems to be more localized and not as widespread. It is mostly my on the right side of my jaw, temple, neck, and shoulder. My left quad and hip are usually tight and sore as well. There are days when I have other areas flare up but those are my current "hot spots".

I still try and fit in all of my therapy and take rest periods during the day. I am very pleased with my progress. Of course, I would love to accelerate this progress but I have learned to be much more patient than I used to be. Between the Botox and the neuroplasticity training I am hopeful that I may someday be able to do some of my much loved activities again and possibly go back to work.

I still do the rotator video and Left Brain exercise videos from Dr. Antonucci. I also use the laser gym for eye therapy. I do deep breathing exercises 2-3 times a day for 15-20 minutes.

The last few months have not been so great. After my last Botox injections (Oct 24th) I got my usual flu-like symptoms and felt pretty bad for the first two weeks which is normal for me. Of course the doctor who does my injections said that I am the only patient that hast this type of reaction. This time the fatigue and symptoms of congestion and my cough lingered. I felt like everything I did was exhausting and I really had to push myself to go for a walk or swim. I was also having a lot of skin flare-ups on my neck, face and scalp and made an appointment with a dermatologist. She told me that I have a staph infection and would need to take antibiotics for 1 month. My skin is starting to clear up, but then we got struck with the flu. The whole family got it so Christmas was a bust. The most difficult part of being ill is that my dedication to my therapy and exercises has fallen short. I feel so tired and weak all of the time and cardio is the last thing on my mind. On good days I try and do it but there have not been very many good days. I still do my eye exercises daily and try to stretch but I am trying to find the strength to get back to physical exercise that Dr. Farias finds so important to bring the body back to balance. I was diagnosed years ago with an immune deficiency (selective IGA) and I made an appointment to see the immunologist to get retested which is in January. It has been 5 years sine I have seen her.  Hopefully I can get this issue addressed and figured out so that I can get moving again.

I wish you health, happiness, peace, and joy.

Happy New Year!

Monday, November 20, 2017

When you are told not to let your disease define you.

I get a lot of advice from well-meaning friends, family members, and my doctors. Sometimes it is helpful and other times I want to implode. I understand that my chronic illness is difficult for them to understand and most of the time it seems like I am consumed by my dystonia.

On Facebook I post a lot of stories and and share updates from my amazing doctors. I usually get a few "likes" from other patients, doctors, and my closest friends who know my struggle. Everyone one else has probably unfollowed me or just keeps on  trolling on through. I am hoping to spread awareness about dystonia but the only people looking are already aware.

What many of them have said to me is "Don't let dystonia define you". "You are not dystonia". "Maybe if you tried a little harder not to think about it". "Have you tried this - (Insert endless suggestion list here) exercise, herbal tea, prayer, books, diet, etc... ? 

 What they don't understand is that when you have dystonia you never get a break from it except when you sleep. Sleep does not come easy for me and I have suffered since I was 19 ( now 30 years ago) with falling asleep. I would take sips of NyQuil back then. Later I used Tylenol PM. Then Amitryptaline. Then Xanax. None of it helped long term. In 2011 I had insomnia so bad I ended up admitting myself to a inpatient psychiatric hospital because not one doctor could find the source of my neck pain, anxiety, gastrointestinal issues, hearing loss, immune deficiencies and headaches. I thought I was nuts.  In the Psych hospital I was diagnosed with PTSD from a childhood trauma. There they gave me trazadone and celexa. It helped for about three months then back to feeling wired and tired and I still had crazy pain in my neck. When my head finally twisted and I had tremors and pain so bad I cried all night and most days I was finally diagnosed with cervical dystonia. (which four months later I found out that the cervical dystonia was secondary to the oral dystonia which is my primary diagnosis). It took almost thirty years to for me to get properly diagnosed. One doctor prescribed me ambien and it was amazing and the best sleep I'd had in years. Unfortunately , they only gave me a 30 day supply and said that there were too many risks involved. I was willing to sign a waiver or do anything for more. I guess there have been reports of people driving cars and sleepwalking while taking this drug and doctors don't want the liability. I totally understand, but at the time it was incredibly frustrating. Now I take herbal supplements that seem to work fairly well. Controlling my anxiety has been the greatest hurdle.

So I have been defined my whole life by dystonia. Dystonia was very sneaky but now I know the "why" to all of my symptoms. All of these symptoms are still with me. Every day. I try not to complain as much to anyone. On days when I can't feel my left foot or my lip and cheek start twitching - it's hard to ignore. When my left quad feels like a cable or my foot gets stuck in a "charlie horse" cramp - it's hard to ignore. When someone says, "look at this" and I cannot turn my head in that direction without pain or without physically willing and pushing myself to do it-it's hard to ignore. When I have insomnia and start to panic thinking about the trauma of being locked up for 8 days I get scared and that is hard to ignore. It is impossible not to feel "defined".

I am trying to get out more and the Botox has helped ease the spasm and pain along with my exercise regime. That regimen takes up to 3 hours a day. My whole life has been spent dealing with dystonia and still is. Now that I know the definition of dystonia I can redefine the meaning and hopefully help others who feel lost and are suffering. If dystonia defines me, then so be it. 

You can see the published version on "THE MIGHTY" HERE