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Cervical Dystonia and Pregnancy

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Posted 1/25/2012 1:14 PM (GMT 0)
Jazzy83 - I couldn't respond to your post from August, but if you see this, please post back.  I'm 30 with cervical dystonia and I have an 18 mo old daughter and a second one on the way.  I'd be happy to chat with you about being pregnant with CD.
Posted 1/25/2012 2:10 PM (GMT 0)
 

        Good Morning Jules!

             Welcome to the CP forum! I see that you are trying to support one of our other members from back in August, and there is a good chance that they may not respond if they have not continued to visit us here.

     We do want to invite you to join our family of Chronis Pain sufferer's here, as we do have a few members who suffer from "Cervical Dystonia" ....in fact, I believe one of our moderators suffers from Dystonia, but I'm not sure if it's cervical.

        We welcome any support you can offer, and likewise we will always support you as well.

     Oh!... and congrat's on the pregnancy!...when are you due?

    Thank you for stopping by, and we hope to visit with you again.

      Enjoy!...SE wink

  

Posted 1/26/2012 9:19 AM (GMT 0)
Hi Jules, and welcome - congratulations too on your pregnancy.

As Screaming Eagle said - I know the frustrations of dystonia though mine affects mainly my feet and ankles, where it's now caused joint contractures, and periodically affects my right hand, shoulder and only occasionally my neck.

Are you having any therapy to help? Are there meds you can take that won't cross the placenta? Does physiotherapy help you?

My life-saver has been a baclofen pump. I still have severe pain because of my other issues - but the baclofen via the pump helps to relieve the worst of the spasms and pain associated with the dystonia. Oral relaxants wouldn't work and botox was a disaster for me.

Anyway, welcome again :-)

Laura
Posted 2/10/2012 11:22 PM (GMT 0)
Jules,
I'd really like to speak with you about cervical dystonia and pregnancy. My diagnosis came after I suffered an ectopic pregnancy and had my right tube removed. My husband and I want so badly to have another baby but I don't know that this is a possibility for us any more due to this diagnosis. I have to take Gabapentin for nerve pain, tramadol for pain, and baclofen. I also have to have botox injections every three months. It's been 18 months since this started. I'm 33 and working with half the equipment. The pain is excruciating and I can not function without the medications/botox. I know I can't take these medications while pregnant. Are there medications that you can take? How did you do it? I could sure use any advice you have to offer. Thank you so much and congratulations on both of your little ones.
Posted 7/28/2014 2:23 AM (GMT 0)
I know this thread is a few years old, but I am 27 and have had cervical dystonia for several years. I've always wanted to have children, but I'm afraid to approach the subject with my doctors. I would love to talk to anyone who has cervical dystonia and has become pregnant. I am thinking that it would take a year or so to wean off of my medications, but I am just wondering about functioning during pregnancy during without Botox and even parenting with CD.

Thanks!
Posted 7/28/2014 7:11 AM (GMT 0)
Hey SarahBelle,

Welcome to HealingWell.

My best advice is to start a new thread....... with a similar title........ and I think you'll get more responses that way.

Just so you know, if you are working w/ a high risk OB/GYN - there are lots of things that can be done to have a successful pregnancy w/ chronic pain. I'm proof of that, as I have 8 children. The last 3 born while on medications (although I did taper WAY down).

Anyway -- good luck to you! --Tina
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