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.


Bed Rest At 22 Weeks

When I found out I was pregnant I was rather aware that the chances of me having a ‘normal’ pregnancy were slim. The simple fact that I would need to come off all of my medication was knowledge enough of that, with only a few of them being prescribed for any emergency situations that may arise.

The first half of my pregnancy went smoother than I could ever have expected with the exception of a few hospital admittance’s. At each midwifes appointment she exclaimed how pleased she was with the way I was progressing. After 4 months of this, I even started to dare to wonder if just maybe I could get through the whole 9 months like this.

Now of course life is not simple, so now at 22 weeks and 6 days I am on prescribed bed rest, using a wheelchair on Drs orders, and passing out several times a day. Seeing it written down like that it does seem a bit daunting, but the reality is that this is still more ‘normal’ than I could have ever hoped for. I had had nightmares of being admitted to hospital for the whole 9 months, on a feeding tube with agonising spasms. This was an extremely real possibility for me, so the fact that that scenario hasn’t materialised, touch wood, feels like a miracle.

As much as I am no fan of morning sickness and passing out, seeing our little boy on the screen wriggling around and making it difficult for the sonographer makes me smile. Due to my complications, we’ve already had 5 scans and have another 2 at least coming up. Watching him develop and feeling him move around wipes away all the concerns I have for my own health; I would happily spend months in hospital if it came to it, as at the end of the day he’s our little miracle and I cannot wait to finally meet him.


6 Things I didn’t know to expect

When I first found out I was pregnant I naively believed that my eyes were wide open to the nature of pregnancy and labour after completing a year of my midwifery degree before being struck down by chronic illness. To a degree I was right, so far I have been aware of what to expect and when, but I had no idea just how normal everyday pregnancy symptoms would impact my health.

  • Morning Sickness

I knew my mum had suffered from Hyperemesis Gravidarum in all four of her pregnancies. So, I was prepared for the worst and wasn’t surprised when I too received the diagnosis. What I didn’t expect was that none, and I mean none, of the anti-sickness tablets or injections would help; some even made it worse as many were coated in lactose, which I am severely intolerant to. On average I found myself throwing up 30 odd times a day, this would have been bad enough on its own, however the force of my sickness was causing my jaw to dislocate almost every single time. I can cope with sickness and dislocations on their own, but combined with little in the way of pain relief made getting through each day hard. On more than one occasion my partner would come into the bathroom with a glass of water and rub my back whilst I warned him we wouldn’t be doing this pregnancy lark again (I’ll admit now I like the idea of more…in several years).Image result for hyperemesis gravidarum

  • Tiredness

Fatigue in the first trimester is something that many women experience. I have read countless blogs with pregnant women struggling to make it through the working day due to the extreme levels of tiredness. Chronic illness and pain has been part of my life for four years now, and tiredness is a big part of this. To counteract this I pace and make sure I am plenty rested. I had presumed at the start of my pregnancy that this method would be enough to ensure I coped with the tiredness levels that came with pregnancy. Boy was I wrong. For the first 16 weeks, all I was capable of each day was attending my lectures, shuffling down to the Drs so they could monitor me and then collapsing in a heap on my bed until the next day.

Image result for cartoon tiredness in pregnancy

  • The Glow

I’m pretty sure this one applies to any pregnant woman whether they are ill or not. We’ve all heard about the glow that women supposedly get in the second trimester. I don’t know about you, but I have certainly enviously looked at pregnant women in the high street and thought ‘Wow doesn’t she look amazing’. Several family members and friends have repeatedly told me that I’m looking great, and I’m sure they mean it, however there is always that annoying voice in the back of my head saying ‘yeah that glow is a sheen of sweat caused by a hot flush and sickness’. But hey let’s just roll with the compliment.

  • Energy in the second trimester

At time of writing this blog post I am 22 weeks and 3 days pregnant and in bed on Drs orders. In all honesty, even without the prescribed bed rest, I feel that I would be having to take naps throughout the day. At first being so fatigued upset me but now I can see the positives. It is not as extreme as the first trimester though still pretty bad, and considering I have come off of all my medications I’m doing incredibly well.  Though I am still hoping my dose of Duracell bunny style energy is just late coming to the party.

  • Immunity goes out the window

I have several health conditions that all deteriorate if I catch even the slightest bug. Throw pregnancy into the matter and it seems that my immune system has decided to take a nine-month vacation.

Whilst this make all sound negative, and I’m not going to lie coping with pregnancy and chronic illness is hard, I am enjoying my pregnancy. Now that I can feel my little boy kicking away I have a constant reminder of the miracle waiting for me in May.


His little feet