Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Trip to the Consultant

On Tuesday I went up to London to see my consultant, I went armed with a notepad full of questions. I must say that I was extremely pleased with how the appointment went. I felt that my consultant listened to all of my concerns and really wanted to help me.

After explaining to my consultant all of my new symptoms and how they have resulted in an increase of Non Epileptic Seizures due to the pain, my consultant had a couple of ideas. First of all, after demonstrating to him how my neck spasms (it goes down towards my right shoulder, whilst rotating left, so I am in a sort of diagonally skywards position), he decided to administer Botox to my neck.

He administered the first lot of injections to my jaw to help relieve my Ormandibular Dystonia, this was relatively painless. He then went onto my neck. I expected this to be fairly painless as well. I was wrong. It was painful, I feel sorry for my mums poor fingers that I was already squeezing as I really do not like needles that are aimed at me. However I would rather have a couple of seconds of discomfort than hours of a hideous neck spasm.

My consultants second idea, is to introduce Clonzepam into my medication cocktail. At first I shall only take it when I think I am about to have a seizure. If that does not work then I shall start taking it nightly. His theory is that when I am in severe pain, my body goes into fight or flight mode and my bodies way of fleeing is by going into a Non Epileptic Seizure, therefore the medication should prevent my body from feeling like it has to fight or flee.

We discussed the role of dopamine, and he feels that my Dystonia is not dopa-responsive, so does not want to do a trial of levadope. Whilst this is disappointing, I can understand why he feels this, I know that I was only hoping I could try it, so that if did work I would be able to return to university in September. However I am not totally giving up on this idea. From the way my consultant spoke I was given the impression that many treatment avenues are closed for me because of the Non Epileptic Attacks. I am hoping that if the Clonzepam does its role right and stops them, then my Dystonia will be able to viewed in a light that is not tainted by them, it is at that point that I shall bringing up trying Levadope again.

For now I am going to sit back and count down the days to April 18th, when my riding lessons start-up again. I cannot wait to get back to it, its my happy place.

 

Advertisements

Comments on: "Trip to the Consultant" (2)

  1. Hoping the Botox will work very well for you!
    Don’t give up on the idea of trying the leva-dopa… I did a trial but had trouble tolerating the med (stomach issues); it wasn’t really helpful, but for some, it brings dramatic improvement.
    Clonazapam may really help you. I take small doses of Ativan (similar, as it’s a benzo), and it definitely helps with spasms. Also, will aid in sleep.
    Sounds like you are in good hands – good luck!

  2. I also have Dystonia- I blog on this site also. I take clonazepam. I took leva dopa and had bad side effects…but I acknowledge that everyone is different. Even though I do not have DYT1; I am relatively sure that my Dystonia is genetic. My kids have Blepharospasm and 3 out of 6 grandchildren also have it :-((. My Dr is good. I see a pain specialist. He does listen to me. I am presently considering Botox (I have had minimal success with it). I hesitate only because the last time I had it; I could not eat for about 3 weeks- lost 20 lbs and THAT Dr said that I was Anorexic!

    I have also had DBS- no success. I presently am doing Tai chi and Yoga.Good luck. You seem to have a great attitude (it helps)

    I am not allowed to drive. I take a bus; but I am at their mercy. I would LOVE to just get in the car and go to the mall- ain’t gonna happen….cannot have everything. Just hang in there. I have found that writing helps. I do not complain vocally- I have spasmodic Dysphonia also. My blog is my voice.

    Also, getting support is so important. I love Neuronants! A wonderful group and I am very grateful that Lori started it. I’ll be forever in her debt for that.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Tag Cloud

%d bloggers like this: