Dystonia & Pregnancy; The Experience So Far

I live with a range of chronic health conditions, when I saw those two little pink lines at 3 weeks pregnant, my first thought was how on earth my body was going to cope with pregnancy! I knew from my previous midwifery training that none of treatments would be able to continue through my Pregnancy, so it was no surprise when at four weeks pregnant my consultant told me it was time to come off all my medications. Reluctant was not even the start of what I was feeling at the prospect of this, I’ve been totally reliant on my meds to keep my functioning to some degree these last four years, that the concept of coming off them terrified me beyond belief. However the experience has been a hundred times more positive than I could have ever have imagined, therefore I am going to post a series of blogs on how my conditions have adept to the pregnancy, with each condition having its own dedicated post due to their unique nature.cropped-1-dy

At the time I was on a wide variety of medication including six weekly botox injections to my eyes, jaw, neck and left shoulder for my Dystonia, along with Gabapentin, Tramadol, Topiramate, Dantrolene and more. Considering the length of time, I had been taking these medications I expect to too experience withdrawal symptoms, but miraculously only the Gabapentin caused this and whilst unpleasant it only lasted a few days; much to my relief.

My main concern was how I would cope without Botox and my muscle relaxant Dantroline. Over the last four and a half years I have been reliant on my six weekly Botox to keep me resembling an almost functional person, and Dantroline was the only muscle relaxant that I found effective and can stay awake on for more than 5 minutes at a time. After expressing my concerns to my neuro he reassured me that I may not find these 9 months as terrifying as I expected, as some women reported experiencing an improvement in their symptoms in pregnancy. I wanted to believe him badly, any improvement I would take in a heartbeat, but at the same time I found it extremely hard to believe that something as natural as pregnancy could offer me an improvement that medication was unable to provide. Now I bow down to the wonder that is pregnancy, I’m currently almost 6 months’ pregnant and unbelievably my Dystonia isn’t too bad.

For the first 12ish weeks I only had minor symptoms, which was a relief as my Hyperemesis Gravidarum meant that I wasn’t by any means well enough to cope with any severe spasms. By week 14 however I was admitted to hospital after spending 24 hours with my jaw dislocated and in spasm, unable to eat or drink. In the end, I was in the hospital for a week whilst they attempted to figure out what to do with me; without fail several times a day a Dr would look at me and be shocked that my jaw was still dislocated. I think my let’s laugh through the pain attitude confused them further. Eventually, after my midwife got involved and advocated on my behalf,my neuro agreed to administer botox to my jaw and restart me on a small dose of Gabapentin, which has allowed me to remain fairly normal with the exception of the odd spasm.

Whilst my Dystonia is without a doubt very much present still, I’m coping far better than I had ever imagined. I had truly expected to spend my pregnancy bed bound in hospital stuck on a feeding tube with irritable limbs, the fact that this hasn’t (touch wood) materialised feels like a miracle, especially as a feeding tube was at the start debated. If it could just stay like this for the remainder of the pregnancy, I’ll thank my lucky stars.


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