Wellness Journal | Psychogenic Dystonia

There is no rhyme or reason when I get like this. My body is not my own. I am tired and frustrated and sick and it is a never ending cycle sometimes. Sometimes I can see my way out, but right now I'm so frazzled.

I have to give up my medicine for the next week and I'm crying right now because it's going to be so hard. I've been experiencing horrible dystonia all week with sharp, piercing pains in my legs. It makes me cry out in my sleep at night. I am slowly losing my mobility. I have to use the handicapped carts at the grocery store. My tremors are worse tonight, not only in my arms, but in my legs, too. This is what happened last time I had a MAJOR episode that lasted for over a week.

So, I estimated how long it took between stopping my medicine last time and the reoccurrence of symptoms. It was five days. My neurology appointment in Houston is next week. Last time I went I only stopped taking my oil for a day. I want them to see me without it. I want it videotaped as I'm sure it will be. I want my illness to be well documented. I want them to see how much better I do on cannabis oil than without.

There are times when I still feel so alone. I have met some people online that have what I have, but it doesn't make me feel better to know them. It makes me sad for all of us. It makes me sad that so little is known about Conversion Disorder. The UK is reclassifying this disorder as a physical disorder next year and I'm glad. Maybe more doctors will take what we suffer into account. There's just not enough research into a disorder that's been around since before Freud's time.

I guess what would make me feel not so alone would be if there would be cannabis oil studies done on Conversion Disorder. Heck, even to know one other person that consumed to compare notes on what is the very best way to consume to help our symptoms would be so awesome and would make me feel less alone.

I know that my road is hard. There is very little research and very little people get completely better. I'm hoping for a happy medium. I want to manage my disorder as best as I can and enjoy my life as much as I can for whatever it is---MOST DAYS, but this moment is just not one of them.

I know I will prevail. I just need rest and relaxation and laughter. I need love and I'm happy to say that I have that in spades around here! I adore my man, my children and our life together. It's what gets me through all the tough times, it's what I hold most dear and it's what fuels me to do what I do. Passion and life is what it's all about.

Whew. I just smiled. Feels great!

Research | Functional Neurological Disorder Diagnosis Acceptance

Dear, Readers! First off, I would like to apologize that I haven't been writing blog posts for my "31 Days to Free Your Mind about Cannabis" series. I've been having some hard health days lately and I'm just not able to keep up. The stress of trying isn't helping either. I am committed to completing the project, but it will take me quite a bit of time to catch up and I'm going to do it slowly so it can be done correctly. :)

I have been diagnosed with Psychogenic Movement Disorder by three different neurologists, and, until today, I did not believe it. There isn't much research on this disorder in the U.S., but the world's leading expert, Dr. Mark Edwards, is in the UK and that's where all research on it stems from. In the UK, Psychogenic Movement Disorder is classified as Functional Neurological Disorder or Conversion Disorder. I prefer the term, Functional Neurological Disorder, over Psychogenic, because after just a bit of research, I discovered that it is actually a physical disorder, not a psychological one. While watching the following videos I started to believe that Functional Neurological Disorder is my correct diagnosis. Take a look and see why.

Holly's Conversion Disorder Fight, 5 min.

This video shows that the symptoms are very real. Health experts cannot explain FND fully.

Second Opinion | Conversion Disorder, 26 min.

Listen to the neurologist's explanation of how this is diagnosed and

"...the differences between neurology and psychology are becoming increasingly blurred."

After watching this video I looked up the definition to further my education.

What is Functional Neurological Disorder?

It is important to note here that the terms, "Functional Neurological Disorder" and "Conversion Disorder" are used primarily in the UK where the world's leading expert resides. This leaves many confused on their diagnosis and struggling to find where they fit in.  They individually mean different things, however, they are all labels for the same disorder.

Functional Neurological Disorder provides an umbrella term for a variety of symptoms of apparent neurological origin but which current models struggle to explain psychologically or organically.  Presentation may be similar to a wide range of other neurological conditions.  FND/CD can be as debilitating as Parkinson’s disease and MS and have many similar symptoms.  The most common misconception is that patients are in control of some or all of their symptoms.  The patient does not consciously produce functional symptoms.   A patient with conscious control of their symptoms has a different diagnosis such as Feigning, Malingering, or Munchausen Syndrome.

Functional Neurological Disorder can present with any motor or sensory symptoms in the body including:

• Chronic Pain
• Non-Epileptic Seizures
• Speech Problems
• Involuntary Movements
• Paralysis/Weakness
• Headaches/Migraines
• Bladder/Bowel Changes
• Cognitive Changes
• Visual Changes
• Sensory Symptoms
• Sleep Disturbances
• Gait/Balance Changes

Given the occurrence of these medically unexplained symptoms in patients with organic brain injury, spinal injury, post-anesthesia and post-viral illnesses, the modern term moves away from psychodynamic theory and provides a useful label for what is a complex and little understood disorder. [Source]

 What is Psychogenic Movement Disorder?

To better explain this disorder, I find it pertinent to add this information from the U.S.

Psychogenic movement is an unwanted muscle movement such as a spasm or tremor that is caused by an underlying psychological condition. Psychogenic movement can involve any part of the body and resemble the same muscle movements that occur with a biological condition or structural abnormality. Most psychogenic movement is involuntary—done without being consciously initiated by the individual. Psychogenic movement may develop as part of a conversion disorder (in which a psychological event causes physical symptoms with no known medical cause). It also may result from a somatoform disorder (characterized predominantly by multi-system symptoms that are associated with distress and/or dysfunction), factitious disorder (an illness that simulates symptoms for psychological reasons), or malingering (not characterized as a psychiatric disorder but where illness is pretended as a way to achieve a secondary goal such as the acquisition of drugs or disability benefits). Unlike movement disorders caused by biological or structural conditions, psychogenic movement disorders commonly develop suddenly, progress rapidly to maximum severity, may increase in intensity, and come and go with complete or partial remissions.  The movement may be less when the person is distracted, and the severity of symptoms varies among individuals.  The course of the psychological condition may be short-lived or lead to chronic disability.  

Psychogenic movement is uncommon before the age of 10 years. In children, the dominant limb is most often affected, while adults most frequently see movement in the nondominant limb. 

Psychogenic movement disorders include: 

Psychogenic tremor (also called functional tremor) can appear as any form of tremor movement. Characteristics may vary but generally include sudden onset and remission, increased incidence with stress, change in tremor direction and/or body part affected, and greatly decreased or disappearing tremor activity when the person is being distracted. Many individuals with psychogenic tremor have a conversion disorder. 

Psychogenic dystonia involves involuntary muscle contractions that cause slow, repetitive movements or abnormal postures that are often severely painful. Onset may be abrupt or appear as part of a recurring attack. Psychogenic dystonia typically involves fixed postures, particularly from the start, whereas dystonia caused by a muscle or structural abnormality tends to involve more mobility and be action induced.Psychogenic myoclonus refers to sudden, involuntary muscle contractions (twitches) or jerking of a muscle or group of muscles that are caused by a psychological condition. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. Increased startle or startle-like movements are frequent. Psychogenic myoclonus may occur spontaneously or be generated by an action or reflex. The twitching cannot be controlled by the person experiencing it. 

Psychogenic parkinsonism involves rigid movements that are extremely slow and often associated with a great sense of effort and rapid onset of severe fatigue. Individuals with psychogenic parkinsonism may also have tremor. Symptoms are usually seen on both sides of the body. 

Psychogenic gait disturbances feature unusual patterns of stance and gait. Individuals may stagger or veer from side to side when walking and appear to be losing their balance, but only rarely fall. Sudden knee buckling without falling is common. [Source]

The Research Process...

My brain was going overtime after watching the videos and reading the symptom list and definitions. The first video was shocking. The young lady had shaky voice issues just like me and, though her symptoms were more extreme than mine, I noticed that the twisting motions were the same. Her diagnosis was the same as mine. The second video explained more to me how a doctor actually comes to a diagnosis and I began to think about why it was that doctors were having such a hard time finding out what was wrong. Why weren't the tests conclusive? Why weren't medical tests like EEGs and MRIs showing problems when patients were obviously not faking it? According to the statistics, psychogenic movement disorder is the most common movement disorder in the spectrum of movement disorders with 2-3% of the world's population diagnosed as psychogenic. That means that movement disorder specialists see this type of movement more than any other movement disorder. That means that they must know by now what to look for. It was interesting to hear in the second video what differentiates the tremor in psychogenic movement disorder from a Parkinson's tremor. After watching the video, I knew that I believed I the legitimacy of my medical diagnosis.

I looked online and found that the facts presented in the videos were mirrored by other stories and accounts. I found a Functional Neurological Disorder/Conversion Disorder/fndhope.org group on FB and over 1,000 people discussing their diagnosis. Some of them didn't believe the diagnosis and some of them did. They all experience similar mysterious symptoms, but not all of their disorders present the same. Some of them have just one psychogenic component of the disorder like psychogenic epilepsy while some have multiple areas of concern. Some are attempting to heal themselves with EDMR, a PTSD psychological technique, to access the initial trauma that started their illness. Others focus on their physical symptoms and see occupational therapists to help them relearn how to use their bodies. Some say that their symptoms started in childhood and that they have family members that have Functional Neurological Disorder as well. This last part is particularly interesting both for the fact that this can't be a just a mental illness and for the fact that it can be genetic. That this happens in families also sets my mind at ease about this diagnosis since my recently estranged sister has the same disorder.

I noticed during my research on different types of neurological disorders that almost every condition has a mental illness component. Parkinson's, Huntington's, Lyme disease, fibromyalgia and epilepsy all list depression or anxiety as a symptom. I find it safe to say that there is much more medical research that needs to be done on this disorder. When functional neurological disorder patients hear that this disorder is caused by psychiatric trauma, they automatically discount it because they know that they are not making up their symptoms. Some patients have never even experienced any trauma and, therefore, don't believe their diagnosis.

Neurology and psychology are blurred in FND...

One thing that is abundantly clear is that all functional neurological disorder patients are all suffering and they are all upset with the way the medical community has classified the disorder as a mental illness. There is research coming out of the UK from the University of Cambridge that says that when an organic dystonia is present that the brain does something abnormal in one direction. The psychogenic brain is abnormal, too, but in the opposite direction of the organic disorder. This proves that Functional Neurological Disorder is indeed a neurological disorder, instead of a mental illness.

I had heard that I was crazy from doctors before. The first time I heard that my symptoms were in my head was in 2002 after my auto accident with an 18 wheeler. The back doctor told me that he didn't understand why I was in so much pain. I had numerous shots in my back, but still needed vidodin for the pain. After completing a dye test that showed that I had bad disks, I stopped seeing doctors except once a year for pain meds. Then, again, years later when I saw a gastro doctor for a vomiting problem that lasted over a year (it later resolved itself for no apparent reason) they told me that they didn't know what was wrong with me. So, I was fed up with doctors telling me that my symptoms were in my head. I thought I was just seeing stupid doctors, so I changed doctors every time.

I completely understand why anyone that receives this diagnosis wants to refute their doctor's findings. Most doctors are scientist type personalities and are missing a sensitivity chip. If patients were told from neurologists, "All neurological disorders have a component of mental illness and this one is not any different. You have a mysterious neurological illness that may or may not be caused by previous trauma. I can help you with medications, but PTSD therapies and occupational therapy have shown great results in your disorder," then that would make more of an impact.

All neurologists across the world agree that the quicker you can get this diagnosed and the quicker you get into treatment the more likely that Functional Neurological Disorder can be cured, but that happens infrequently. Most patients have reoccurring psychogenic illnesses for the rest of their lives. The disorder cannot be cured and most patients are using prescription medications and psychological therapies to control their symptoms.

Everything happens for a reason...

One more thing to note... After receiving my first diagnosis over a year ago, I researched this topic and found Dr. Jankovic, but forgot about him. A year later, as I was about to give up, I remembered only that he was a leading movement disorder specialist. I saw him two weeks ago and his diagnosis was psychogenic movement disorder. He, too, is missing a sensitivity chip, but not as much as some of the other neurologists. I left his office disappointed and ready to give up on all western medicine doctors. If I hadn't seen Holly's video and heard her story, then I may have gone the rest of my life disbelieving my correct diagnosis. 

Everything happens for a reason. A year ago I wasn't meant to understand, but after watching Holly's video I have hope. Thank you, Holly, for being brave enough to share your story. I will be forever grateful. :)

Holly's Conversion Disorder Follow-up Video, 6 min.

Read about CC's story

Doctor Notes | A Medical Diagnosis of Psychogenic Movement Disorder

Texas Medical Center

Catch up on my story here!

We awoke super early to travel four hours to go to Houston for a last minute doctor's appointment with the best neurologist in Texas. We packed all my pillows and electrical devices and headed out the door. I was a nervous wreck.

I did my best to stay calm. I smoked a lot of our delicious, medicinal quality Berry White because I didn't want to take my cannabis oil so that my tremors and tics would come out for my medical examination. We got there just in time to have lunch at Chipotle and eat a lunch out door listening to a disabled man play jazz on his horn. I ate a taco and a half and then threw the rest away. I was too nervous to eat.

A disabled man plays a little jazz for money on a street corner. 

We were in the middle of the Texas Medical Center which is huge with very tall buildings and lots of pedestrians and traffic. We had a bit of a difficulty finding where we needed to go. We entered in at the address given and then had to take the elevator up the crosswalk, walk into another high rise building and then we took the elevator up eighteen more floors. When we got off the elevator we walked straight up to the reception desk. Apparently this doctor was making enough money to afford to rent the entire floor of offices. The waiting room was large enough to fit 100 people more than comfortably. The chairs were plush and we sank into them as we waited. I momentarily thought about how much money all of this took to accomplish and how Big Pharma was making a killing off of this doctor.

We were efficiently ushered into the back offices by the nurses that took my weight measurements and checked my blood pressure. They were all up in arms about how my blood pressure would not read electronically. I told them that a manual one was needed as this always happens, but they insisted so that made me so nervous that, when they finally got a reading, my blood pressure was through the roof. It should've alerted me that all of that drama was merely 'forecasting' for the rest of the appointment.

We waited for five to ten minutes in their gigantic waiting room once again before an Indian doctor came out to greet us and took us back into her office. The large picture window captured my attention. The view was spectacular. I tried to make small talk with the doctor about the glorious view, but she said she didn't even look at the view (I began to think about why I would go to a doctor that didn't even appreciate this incredible view!), pushed my small talk aside and got to my medical history. During questions of when my symptoms first began (and all those tedious questions I have to answer every single time I go to doctors) I started to become extremely annoyed. I wasn't sure how much she was paying attention, but she repeated everything back to me accurately. After an hour we were sent to the waiting room again to wait to see Dr. Jankovic.

Dr. Jankovic is supposed to be the best neurologist in Texas. He has written many, many books on movement disorders and I was interested in seeing him because of it. We waited about twenty minutes before we saw him. He was short man with glasses and had a balding head with tufts of shocking white hair against his tan skin. He had kind eyes and was quiet as his assistant told him about my symptoms. He watched me as he listened to her. My body was acting up just a little bit, but not as much as it has in the past. I still had some neck tics and tremors. He began our discussion by asking me what tests I thought that I needed to have next. I told him that I thought that a Huntington's DNA test was in order and he agreed. After speaking with me a bit about what I was most concerned about (my short term memory loss, bad concentration skills, and forgetting words) he proceeded to tell me that he thought that my movement disorder was psychogenic, not Huntington's or Parkinson's Diseases.

My eyes grew big in amazement as he spoke. He said that he thought that stress was what was causing my movements. I grew quieter and quieter. This was the very best doctor in Texas and he was basically telling me that I was crazy. I waited until he left and then tears ran down my cheeks. I had been waiting for so long to hear something, to know something and this is all I had to show for it now. I was very distraught. This was the second time in two weeks that I had heard this same thing. I had just seen Dr. Verona at the Austin Neurological Clinic and his diagnosis was also psychogenic. In less than two weeks I had TWO neurologists tell me that all of this illness is all in my head! Haha! Of course it's in my head! It's neurological, BUT I'm not ready to throw in the towel and jump on the crazy train because I'm NOT crazy!!

This is not stress. This is REAL and it's GENETIC. My sister and I have extremely similar symptoms. My mom falls all the time, has horrible short term memory loss and cognitive problems. You can't tell me that stress is making us all sick. Basically, this doctor is just like every other doctor out there. He doesn't know anything so he blankets it with the term 'Psychogenic Movement Disorder'. The only thing crazy here is that western medicine cannot keep up with the increasing undiagnosed disorders out there. I've found so many undiagnosed neurological patients in my research and it's just crazy to say that we're all crazy!

After crying for a few minutes my tears dried up. I was not going to cry about this anymore! I am pretty okay. I'm good. I know I'm not wonderful, but I'm okay. I know my illness is progressing, but I do have a treatment plan that I've developed and I'm going to keep going. That is my purpose and that is the plan and I'm sticking to it.

Once I calmed down a bit further I realized that I had gotten exactly what I came for! I didn't hold much hope that this neurologist would be able to give me a diagnosis, but I did get the Huntington's DNA test, (that will definitively answer whether or not we have that and that's the scariest thing my sister and I could have) so I'm glad I got my blood drawn for that test before we even left the fancy office. The test results will be available in 6-8 weeks.

Bill and I left the office hand in hand and we were going to drive home, but decided to stay and have a date night in Houston. Bill was so great the entire day. He got off of work at the last minute so we could go. He spoke up during the doctor's office. He was my champion and I gazed at him as we drove down the freeway. I just wanted to spend more time with him and only him, so we put down our phones and spent the night lost in each other. We ate a lovely meal and watched a hilarious comedy in a mostly empty theater where our laughter rang loud and free. All in all it wasn't too shabby of a trip at all! I got what I wanted. I hope Huntington's is not what my sister and I have, but you know what I've decided? I'm DONE with all western medicine and it's uneducated doctors! Answers are overrated. Solutions are not!!!

I know there are many that are outraged at the medical system on my behalf. I think it's very sweet and wonderful that so many people have taken me into their hearts, but it is time to let go of the notion that only western medicine can help me. I have much still to discover, but eastern, holistic, and cannabis medicine are treatments I know will help me. I may never be cured of this neurological disorder, but I will do all I can to ease my symptoms and have a good quality of life. Do not cry for me, my friends! I am well, I am happy, and I am passionate about life. I am going to heal my life. I am at peace!