a response to Sandy

Hi Sandy,

Don't worry. I also consider myself a "lurker" on the dystonia boards because I often feel like I don't have much to contribute. My condition isn't severe enough to warrant the deep brain surgery and it's hard to just complain a lot about what my symptoms are like. And then it sometimes seems that other people don't have the same kinds of problems that I do. I'm replying because I feel it important that I give you experience you can relate too, as opposed to a sterile textbook response from a doctor or an observational medical journal.

Let me answer your questions first. I am in no way an expert on Dystonia and can only speak as to what I've experienced:

Why is depression part of this and how have you managed it?
I think I went through some really dark times because I was caught up in what I was losing. I used to be a teacher and spent most of my career speaking in front of others. When the dystonia was really bad I felt like I was losing the strong, charismatic person I thought I was, I was losing the ability to live a normal life outside of the disease, and I felt like I was going to have to throw away a lot of my dreams and things I loved. I felt like I had to let go of seeing and being around all of my friends. I thought I would never get married or have children. I thought I'd never be able to use a camera again. That was devastating to me. It was much the same as grieving for the loss of a loved one, I felt like I was already dead... not having the ability to contribute to the world in the ways that I wanted to. My counselor said that I had a complex of wanting to be perfect, and in accepting the dystonia I had to realize that I was no longer perfect. He also told me that stress comes a lot from control, or the lack thereof. I think a lot of the depression comes from the fact that you can't just forget that you're body is moving, it's always reminding you. And because the symptoms vary so much, and because dystonia itself is such an obscure, unknown problem, you feel completely alone. There was a time that I was looking into self-help groups that they have in California for people with movement disorders and Parkinson's disease but I felt too isolated to others that I never wanted to go.
I was in a terrible place for about 6 months, probably clinically depressed, and was hopeless. Suicidal thoughts came often. My family stood by me when they could, just watching and listening to me vent but unable to say anything that really saved me. I can't tell you that I know how I made it through, just that I did. It wasn't so much that treatments were working, even though they are I still have my symptoms. But I think it's important that, once I was able to again, I invested myself more in my hobbies, picked up my camera again, and tried to spend more time with those that I loved. It's tough because acceptance doesn't come in a day and it just doesn't happen because we want it to. It's different for everyone, and I know some people spend years, lifetimes going through depression. In terms of my therapist and doctor, they often tried to treat my depression as if it were a distinct problem on it's own. But no, I was a completely happy person before the dystonia. It was the dystonia that was killing me. I can't say that I know how one person will get over their dystonia once diagnosed.

Do you think depression is the norm for most having a movement disorder?
Yes. Prior to the dystonia, I don't think I ever really knew what depression was and I know I never had a panic attack. When I first started posting in the Yahoo! group (my sister would also post in other chat boards about how messed up I was) a lot of people would reply to me and tell me that it's an up and down thing. Waves of depression come and go, probably having to do with the changes of severity of the symptoms and mood. I also have a friend who is afflicted with other maladies and she told me that it's absolutely depressing when your mind is sharp and strong and it almost feels like your body is a third person that is weak and sick. I read somewhere that suicidal thoughts and feelings are common with people that have dystonia. It's hard being hopeful when there's no clear cut cure for your condition. Drugs and Botox only help the symptoms and it seems that there isn't enough public interest in any hope for a cure anytime soon. I personally feel that any hope for a cure for dystonia will come from developments with Parkinson's disease.

How old were you when diagnosed and has it gotten worse?
I'm a young 28. I don't feel like I can relate to a lot of people in the Y! group and haven't had the chance to build my own family to support me. Doctors tell me that there is a small percentage of patients where the dystonia goes into remission, but that the longer you have dystonia the less likely it will go away. The most severe it ever got was in February, I couldn't even walk. My head would move so much I couldn't even read a book! Since then, however, and since starting the botox treatments I can honestly say I've been getting better. (Although part of me believes it's my body getting better on it's own too) There is a book called "surviving dystonia" where a man talks about his experience with dystonia from being a boy. (It's available on Amazon.com) Through his life the dystonia changes so much in severity through the years. I think that's what's so awful about this disease, it is unstable.

Has the botox really helped and did they continue meds also?
I get about 5 shots of botox for a total of 130 units every three months. Some people can get up to 25 shots. It's hard for me to tell that the Botox helps because the reaction isn't sudden, it takes a few weeks for the gradual effect of the botox to occur. So it wasn't like taking a tylenol to immediately relieve a headache. Since February, I've had 3 injections (of growing amount) and since then my dystonia has become better and better. Even though my symptoms weren't completely gone and I wanted to try for a higher dosage, my doctor actually reduced the strength of the botox from 150 to 130 units at my last injection because she felt like it was too high. It may be that I have to accept what I can get from the botox for now. My sister's friend's mom gets botox for Meige's syndrome (a dystonia of facial muscles) and she seems to have no symptoms at all. The reason why they don't want to push the dosage is because the body builds an immunity to the poison, and it becomes less effective over the course of decades. I am also currently taking haldol, which is more commonly prescribed to patients with Tourette's syndrome and is on the no-no list of drugs. I also take Cogentin, which is a drug given to Parkinson's disease patients for tremor. Recently, I was taking Buspar which is anti anxiety drug. All of the depression and anxiety drugs I've taken seemed to have far worse side-effects than benefits and don't work for me. I have an appointment with my doctor tomorrow and I'm going to tell him that I don't want to take any more antidepressants or anxiety medications.

Do you think the botox also helps relieving the anxiety and depression?
The Botox seemingly has no other effect on me, emotional or phsyical, other than stunning the muscles. In terms of the reduction of symptoms, the fact that I can take walks and take pictures again has had a profound effect on how I feel.

How to you approach others regarding any of this?
Well, for a while I avoided everyone like the plague and stayed locked away for the better part of a year. When people called or asked to see me I declined and told them I was in too much pain and didn't feel well. And for a while I was telling everyone that I was just having headache problems and was seeing a neurologist. As you can tell now, I'm very much open to talking as much about it as I can. It makes me feel better to explain it to others, it almost gives me a sense of control over it. I used to be angry. I felt like I was confined and the sight of my condition made everyone else quiet, sad, and depressed. I didn't want to be that person, where just the sight of me turned everyone silent and overly accommodating. I just wanted to be treated like a normal person. And it certainly was painful to hear about the wonderful and exciting things other people were doing with their lives when all I was doing was suffering. For the most part, people were supportive and respectful, but like you a few of my friends and family pulled away. In hindsight, I don't really blame them for it, they just didn't know what to do other than feel sorry for me. I often compare it to coming across a person with obvious disability in public. You are just so caught off guard that you don't know how to approach that person. And that's a terrible thing to do to another human being, to shut down. Sometimes people would offer me advice or words of encouragement, "You're strong. I know you'll make it through this". I never believed them. Not once. In order for people to support you, I think it's important that they understand as much as they can about what you're going through.

I can't say that I recommend for or against you see a psychiatrist/psychologist. I am sure it is helpful for some people. I majored in psychology and it was hard for me to take advice from someone that had no idea what I was going through. I went through 2 counselors that both said I didn't really need them, that I seem capable enough to work out my feelings and problems. It's important to consider what a therapist will do for you, listen and offer advise in approaching your problems. But a therapist can't take your problems away for you, they can only try to help you understand and address them. I do feel good that I at least tried seeing them. Try everything you can to make your dystonia more bearable (I even tried acupuncture).

About Botox, "Will this change my life in being able to do things again?". Honestly, I don't know but I hope so. After my first month on Botox there were no noticeable improvements to my symptoms. This was a huge disappointment to me as I had held Botox as my last chance of survival and was hoping it would be the miracle cure that I was looking for. But I do seem to be getting better and better as time goes by on the Botox. So, just be careful of putting too much hope into it too fast. At some point, one day I just noticed my symptoms to be less than I remembered. Each and every month since I started the Botox my symptoms have become better and better: I can take pictures, I can dance, and I can see my friends again.

Sorry that was so long, it's hard to be concise about dystonia. Feel free to contact me again or ask more questions, it's part of my own personal-therapy. I hope this helps and wish you well.

Take care,

RJ

a response to Karen

Hello Karen,

First of all, everyone on this board (dystonia or not) can relate to all that you have written about below and are so sorry that you have been afflicted with this torturous and confusing disease known as dystonia. I can honestly tell you that after a year of reading everyone's postings here, I have noticed that everyone has a lot of various symptoms that are seemingly unexplainable and unrelated. That's what the horror of dystonia is, you feel so alone and helpless even though you're being treated by so many specialists and amongst people that share and don't share your symptoms. A hard lesson for me was that you (and they) never really know what's for sure. I really wish I or someone else could save you the ordeal of what this is about.

On that note, there is a specific type of neurologist that you should probably see, a specialist who knows more about dystonia than the average neurologist, to get an accurate diagnosis of dystonia. These are called 'movement disorder specialists' and should know more about the signs and symptoms of dystonia. I would ask your current neurologist if they could refer you to one, and if you can't find one that way then do some searching for a neurologist that specializes in Parkinson's disease. The best thing you can do for yourself to find the right treatment is to get a correct and complete diagnosis. It took me 3 neurologists before finally getting one that said what I had was dystonia with confidence. Through extensive tests they ruled everything out. A blood test and MRI showed no brain damage or noticable abnormalities leaving only the demon, dystonia. And yes, I thought myself crazy and went to a Psychiatrist and Psychologist too. One said it was a possibility of a tic disorder, the other said conversion disorder. Karen, you're not crazy. If your body is doing something that you're not telling it to do, then you have a movement disorder.

From what you describe below, the odd movements and the pain, your description sounds like dystonia. I have spasmodic torticollis, also known as cervical dystonia. At it's worst, my dystonia was so bad that I couldn't eat or swallow my food, couldn't walk, couldn't read, couldn't do much more than lie in bed (and even that was a challenge) When it started, I would have these strange odd spasms/jerks of movement in my neck. You could see the large neck muscles pulsate as this occured and the constant jerking would cause a lot of pain in my neck and back. From August to November it started, quieted down in December, and then was at it's Hell-worst in February and May. I think the average onset of dystonia is 5 years. When I finally went in to see a movement disorder specialist, my head was completely out of control. I wasn't actively thinking of making the movements, but you could clearly see that the muscles were flexed and strained and no matter how much physical force was exerted to hold my head back still nothing could be done. These movements weren't reflex movements, could not be stimulated or controlled, and for the most part did not involve any kind of conscious thought on my part. Sometimes, but not often, the dystonia would let up and I'd get a moment to breathe... mostly in the morning. Anxiety and stress plays a major role in my symptoms. Everyone here will tell you to try to calm yourself as much as possible. It used to piss me off so much when doctors and people would say "relax" to me, "I can't relax when I'm in so much pain and when I can't control my movements." I'm much better now, not perfect... not ever perfect... but I've somehow learned to be a more calmed person.

Here's a short video of spasmodic torticollis
http://www.spasmodictorticollis.org/video/VNR.mov

I went throught the gamut of an exhaustive search of medications (I honestly think there's close to nothing left to try) of Parkinson's disease and Tourette's disorder drugs: Drugs for dopamine, for anxiety, for pain... muscle relaxers, and brain drugs, and antidepressants. Some had no effect at all. Others would give me a week's hope that I was someway getting better. And then there were the side effects: Headaches and sleepless nights, depression and panic attacks, pain and sickness, enhanced sensory experiences, weakness and sometimes even worsened dystonia. While I would never try most of these drugs again, I'm honestly glad that I tried all of them... I hear that some of these work for some people some of the time. Today, I take 2 drugs daily and get a regimen of botox shots in my neck every 3 months. And by the way, I've never taken or heard the drugs you mention.

I didn't leave the house for the better part of a year. I avoided my family and friends, chose to suffer a lot alone, and felt trapped by dystonia. But through the help of drug and botox treatments, the gentle understanding of my family and friends, and a thorough grieving and acceptance process, I've been able to move on a little bit. I contacted my boss 2 weeks ago after not having worked for 13 months. I haven't heard back yet (but expect to soon) and am guessing that I won't have a job to return too and will need to find something more accomodating. However, that insecurity is nothing compared to the pain and suffering that I went through back in February. In my grief, I was ready to die. Today, I just have to find a way to live. Just recently I was able to go to a beach and reflect on how amazing it was that I was able to experience the sight of an ocean again. I hope that you are able to find some, any, relief and experience that feeling I had looking upon the horizon and feeling the sand between my toes and thanking God for another chance to live again.

Please do not hesitate to ask questions. We are here to answer.

With hope,

RJ
California, USA

Limbo

If the past year were a walk through hell for me then perhaps I am now in limbo, just trying to find my way back. It's not such a bad place because, thank the Lord, there is a light at the end of the tunnel... but the light seems to change direction every once in a while, is sometimes hard to disseminate from the greys, and sometimes even seems to grow farther rather than closer. But it is there. And eventually I will get there.

So my disability benefits finally ran out. I got a letter in the mail saying I had exhausted my benefit. I can't complain: a year's salary paid to me while I lay in bed. I now have lost the right to complain about having paid taxes. At the same time, work has asked that I hold on until one of my upper managers gets back before we talk about going back to work. I haven't made any decisions, but I have a feeling that means they won't be having me back at all. That may seem cold and daunting for me, but when I think back over the year it really isn't. I survived partly because of the insurance that they kept me on. And being let go from a job isn't as scary as death from a rare disease.

So that's what limbo's like. No cash flow, nothing to do, just waiting for something to happen, anything.