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

Morning Sickness? Try 24/7 Sickness

At the start of my pregnancy I spent day after day at my Doctors trying varying types of anti sickness tablets and injections. Nothing really seemed to touch it. In fact the pills I tried made me worse as they were coated in lactose which I am severely intolerant too. On average I was being sick 30 times a day, the Doctors quickly diagnosed me with mild Hyperemesis Gravidarum and debated admitting me to my local maternity unit.

The diagnosis didn’t surprise me, my mother had suffered with Hyperemesis in all four of her pregnancies; each time having to spend a fair length of time in hospital. I refused being admitted, and compromised with daily phone calls and visits to my GP to make sure I was as healthy as possible. Day to day life was hard, I struggled to find a position that took the edge of the vomiting, even the thought of food made me violently sick. In the end my partner was having to eat in a separate room to me as I could not cope with the smell.3553f35e3f1a2d550879161dd7bbcf83

Now at 17 weeks the sickness has eased off significantly. I’m still nauseous constantly but I’m no longer spending the majority of my days with my head down the toilet. I knew from the start that morning sickness could occur at any point, but I had deluded myself into thinking that it would magically disappear in the second trimester. When this didn’t happen I was crushed, when people commented on my ‘glow’ I struggled not to snap and inform them it was simply sweat from vomiting. Now that the sickness is starting to disappear I’m sure those closest to me are breathing a sigh of relief.

12 Week Scan

Our 12 week scan was a bundle of emotions. I’m a natural worrier and each month I’ve had spotting around the time my period would have been due. As we sat in the waiting room I couldn’t help but anxiously fiddle with the corner of my maternity notes whilst my partner reassured me that everything was fine. He showed no hints of any nerves as he took my constant vomiting as a sign that all was well.

The first thing we saw was our babys eye sockets, he/she was looking straight out which gave us all a good laugh. Watching our baby somersault and stretch was a moment i’ll always treasure. I could not help but laugh as the sonographer repeatedly had to remeasure our baby due to stretching over and over. Seeing it there on the screen made the pregnancy finally feel real to me, and all of a sudden the constant vomiting seems worth it.

We are finding out the gender on the 11th December so fingers crossed baby behaves this time. I’d love to hear you thoughts on what we’re having, team blue or team pink?



High Risk Pregnancy

Right from the start of my pregnancy I knew that I would be classed as High Risk. Before developing my movement disorder and seizures in 2012 I had commenced a degree in Midwifery and had just completed the first year when I became ill. During my community and labour ward placements I had met many women with varying health conditions who had consequently been classed as high risk patients. Whilst the term may sound a tad doom and gloom it didn’t really impact me. In fact, because it completely met my expectations I was able to focus more on how to explain to the professionals in charge of my maternity care my other health concerns.

Pregnancy wise I am completely healthy and normal, sure I started it overweight but my pregnancy has been progressing exactly as would be expected. I cannot express enough the joy I experience being told I’m normal. It’s not a phrase I’m used to being applied to me. Normally Drs stand around me with a confused look on their faces as I seem to fit into none of their tightly defined boxes, so I get bounced around from one specialist to the next, until someone has a lightbulb moment.


credit: Doctorsconcierge.org

After my booking in appointment I was refered to my local hospitals high risk specialist maternity unit. This appointment was a vital chance for me to talk through my care and the potential complications my health conditions could have on my pregnancy and labour. Primarily I was concerned with pain relief during labour. I am unable to have an epidural due to my movement disorder and the fact that I do not respond to local anesthetics. Whilst this fact is not a huge problem, it does cause me concern as my seizure are pain triggered, so managing my pain levels will play a key part in my labour. This conversation has set my mind at eased as a referral has been made for me to see the anesthetist around the 30-week mark to put a plan of action in place.

Whilst many women find being classed as High Risk daunting, and I can understand why, I have found reassurance in the quality of care I have received from the specialist teams. If anything it has reduced my pregnancy concerns dramatically.

6 Weeks and Bleeding

This last week has been an emotional rollercoaster. On Sunday evening I noticed spots of blood after going to the loo. I tried to think nothing of it. I’d done the obligatory google search and new that there was every chance it was simply breakthrough bleeding and not anything more sinister. Whilst the bleeding largely remained as spotting, now and then there were larger smears when wiping. No matter how much my partner tried to reassure me with facts and figures I couldn’t help but the let the panic well up inside me.

In the end I phoned 111 who arranged for us to have an early scan at the Early Pregnancy Unit (EPU) on the Friday once I was six weeks. Those five days were hell. Whilst the bleeding was intermittent, it was still there and I found myself unable to relax and switch off the negative thoughts. Friday morning came and whilst my partner sat beside me reminding me that it was positive I was still experiencing constant sickness, I couldn’t pay attention, I simply counted down the minutes until the scan.

As I was only 6 weeks gestation the ultrasound had to be carried out internally. The sonographer was lovely and kept us calm and reassured throughout as she talked through each part of the producer. Seeing our little bean’s heartbeat on the screen was an emotional moment, I couldn’t quite believe it was still there. It’s a moment I’ll always treasure. The cause of the bleeding couldn’t been seen but at least this provided reassurance nothing sinister was going on.

I’d like to say this experience means I would panic less if this was to ever happen again, however I’m the type of person who panics very easily; I’m sure I’d be just as worked up if it was to happen again.20160923_091513_zpsoyzn9t86

It’s positive!

Sitting at the kitchen counter I was chatting with my partner wolfing down my dinner, my plate loaded with twice the amount I would normally eat. In frustration, I placed my fork down and excused myself for the umpteenth as I needed the loo again. “Anyone would think you were pregnant” my partner quipped. I laughed it off and told him to stop being silly. However, as dinner went on and nausea hit me for the fourth night in a row I couldn’t help but entertain the possibility that perhaps he was right.

The prospect was entirely plausible, due to my host of conditions I am unable to use the majority of contraceptive options available as they have a negative impact on my body. Due to this we rely solely on condoms. I knew there had been one incident that month where the condom had not held up, however I never thought to act on this. And now here I sat, alternating between running to the loo due to the urge to be sick and to pee.

The following morning I nervously headed into to town to buy a Clear Blue and a First Response pregnancy test. Sure, enough there were those two lines. Whilst this pregnancy is a surprise, and I have no idea how it may impact my health, we are looking forward to meeting our little bundle of joy in 2017.