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Sunday, January 27, 2013

A lazy Sunday... Dystonia, Botox and Running...

Well, I just officially registered for the Buffalo Marathon!  Yay me!  Now I actually have to complete it.

Normally today would entail a long slow run.  As I nurse my little foot back to health, I've been thinking about how my next round of Botox injections are going to affect me on race day.  A couple of weeks ago I went to see my movement disorder specialist, Dr. Guttuso.  He's truly awesome.

He did some basic neurological tests and I told him I just didn't feel my Botox had worn off yet.  In fact, the weakness was pretty bad the last time around that I felt it I just beginning to wear off.  For those who don't know, I receive injections in my right levator and rhomboid muscles every 3 months.

Botox injections into these muscles cause slight, temporary paralysis.  This is the only way to get the muscles to relax and not yank my shoulder blade up and head sideways.  The problem with Botox is that I am extremely sensitive to it.  I respond TOO well, which causes terrible weakness.  It impacts eating, brushing my teeth, washing my face, looking down at a book and basically any activity that involves lowering my chin down or bending over to do something.

There was a point in my life, before I had deep brain stimulation, where I needed 30-some injections between both sides of my neck and back.  The all around weakness was terrible.  I hung onto counters and walls to keep myself from falling over.  5k race times were bad.  In fact, the side effects from the Botox became so awful pre-DBS, that I told my neurologist it was not worth it; that I'd rather suffer from dystonic contractions than the weakness from Botox.

After having DBS, most of my muscle spasm went away.  All that was really left was a little tugging and pulling in the right side of my neck.  I had a miraculous, positive results to DBS that basically don't happen.  Even the doctors were shocked at how well I responded.  I no longer needed Botox and controlled most of my symptoms with stimulation setting changes and very low amounts of medication.  Unfortunately, that didn't last for very long - maybe a little over a year or so.  I started going back in for Botox injections and I increased my medications.

This weekend the contractions in my neck came back as the Botox left my body.  Simply trying to fold laundry caused my neck to lock up.  I fought it and folded a couple of loads.  I gave in and split a 10 mg Baclofen pill, hoping that would ease the pain.  I decided to lie down for a little while and let the medication do it's work.  I fell asleep for nearly 4 hours.  Saturday was gone!  Then, go figure, I couldn't sleep Saturday night into Sunday.  I pulled myself out of bed at 12:30.  As much as a don't want to, I'll need to call my neurologist tomorrow and tell him the last round of injections finally wore off.

The cycle will start again.  Extreme weakness. Exhaustion.  Unable to do housework.  It'll be because I'm too weak to do it.  Then when the Botox wears off, extreme tension, pain and fatigue.  It's a catch-22.  It also impacts my running... you use so many muscles when you run that it's crazy!

If I receive Botox this Thursday, I will be scheduled for Botox again at the end of April or the beginning of May.  This will be problematic for me come race day, because the Botox will be peaking around race day.  I will have very weak upper body strength on my right side.  We'll see... if I can tough out this pain and discomfort for a little longer, I might be able to change the cycle around...  In the meantime... it is what it is...

11 comments:

  1. Sometimes, you have to go through a bit of suffering in the pursuit of success. In order for the treatment to take an effect, there are things that you should and shouldn't do. It's April now. How are you feeling? Are you going to push through with the Botox? Well, I hope for the best. Whatever your decision is, I wish that it wouldn't have a bad effect to your health.

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    1. My neurologist scheduled my next round of Botox for the week after the marathon. If I cannot make it until then due to the pain, I will call him to see if I can get in earlier for injections. I do not mind running through the weakness.

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  4. I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

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  5. I am Karen from Canada, I once suffered from cervical dystonia,for more than 30 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had jerky head movements and muscles contract ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Jessica on how her daughter was been cured from cervical dystonia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again for more information you can email him on drwilliams098675@gmail.com for help .

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  6. Thanks to Dr Williams I am so mush happy today, I have been suffering from cervical dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can always go through his website on drwilliams098675@gmail.com for more information ..

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  7. As a sign of gratitude for how my son was saved from dystonia , i decided to reach out to those still suffering from this.
    My son suffered dystonia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from dystonia and so many other with similar body problem, and they left the contact of the doctor who had the herbal cure to dystonia . I never imagined dystonia has a cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months he was fully okay even up till this moment he is so full of life. dystonia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

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  8. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through, I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

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  9. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

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  10. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete