When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.
I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.
It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.
I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.
Days like today I wish someone could just wave a magic wand and fix all this! After spending half the night awake due to bad spasms in my feet, now my jaw and neck spasms have decided to be extreme today. The pain my Oromandibular Dystonia causes is pretty much indescribable. It feels like my jaw is dislocating and that the spasms are trying to force my jaw off my face. The pain often causes me to grab my face, as I feel like I need to try to force it to stay in place. The pain then leads to seizures, I have had many seizures today, and all of this mixed together consequently leaves me exhausted.
I have had to resort to taking my Diazepam today which adds to the tiredness and is currently leaving me feeling spaced out, which I suppose is a nice distraction from the pain. I have always said to myself that this blog will be nothing but pure honesty, and to be honest right now I would just like to cry due to the pain.
Knowing that I can have my injections done tomorrow afternoon is a calming thought . They say that you are to try to live a stress free life when you have Dystonia as stress can worsen your symptoms. How are you meant to live a stress free life when you spend weeks in agony? When your Neurologist, the person who is meant to help you, has become someone you have to battle? How are you meant to be stress free when your life is upside down and the medical profession who are meant to help you are making things harder!
I don’t have down days very often but today is a very bad one. I know there so many positives around me but it is very hard to focus on them when the pain is this bad. I have no energy whatsoever today. I am still in bed and am trying to muster the energy to get up and changed but I would so much rather roll over and go back to sleep.
I have well and truly had enough, my Neurologist is going to have to do a hell of a lot tomorrow to convince me to stay with him. 7 weeks overdue for my injections is ridiculous and I am not prepared to go through this experience ever again, it is just too much!!
When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped it upside down and gave it a good shake and that eventually everything would settle into the right place. Now it may have taken a while but everything is beginning to settle for example why I still hate Dystonia and battle against it, I also embrace the opportunity it gives me to make a difference.
This last week has been extremely busy. Something I am not used to and left me feeling exhausted and wiped out yesterday. I was also overjoyed. I had been busy, and not just in lots of hospital appointments kind of way but in a social interactive enjoyment filled way. It’s like a distorted mirror image of what my life was like previously and you know what I am happy with it!
I may moan that I don’t like what Dystonia does and that I hate the lack of control I have, but at the end of the day I am happy. Compared to a lot of people I have an amazing life. I am surrounded by loving people all wanting to help me, and I am so thankful for them.
This morning I had a fantastic long catch up with a good friend from school who I had not seen in awhile. It was great and it felt just like old times. This evening a lovely friend I lived with at uni is coming round for a cheeky chinese. I am able to be sociable and have a social life, and I am embracing every second of it. I have even started dating, something I thought would not happen for years.
I am doing things I thought I would never do again, that Dystonia had ruined. Now I realise Dystonia never ruined anything, it restricted me and all I needed to do was find the courage in myself to fight back and find ways to get my life back on track.
My life is my own, no matter how much my little alien tries to interfere, it is mine and mine alone.
The section that interested me most was on the role of GABA in Dystonia. At the moment the medical society think (but have yet to prove) that a shortage of an inhibitory neurotransmitter such as GABA could have an impact on Dystonia, as it seems that Dystonia is a failure due to inhibition. Many patients, myself included, who suffer from Dystonia are sometimes put on medications such as Gabapentin, Baclofen or Benzodiazepines. All of these medication increase the amount of GABA in the brain.
I was extremely interested to read this as I currently take both Gabapentin and Baclofen and have found both to have incredible effects on my spasms. The Gabapentin felt like a miracle drug when I was first put on it as has had a huge positive impact on my full body spasm and on my eyes! The Baclofen at the moment is having a fantastic effect on my neck spasms as well other spasms.
So I cannot help but wonder if I have found the answer I have been looking for to why I have Dystonia! I know that I will have to wait until the medical society have managed to prove if this theory is correct, but I cannot help but feel slightly excited. I am always trying to understand why I have Dystonia, and to have an answer would give me peace of mind. I may have a long wait ahead of me but I shall be keeping my fingers crossed.
Today has felt like someone has lit a tiny candle at the end of long tunnel, one that I am still at the beginning of. I cannot turn back, all I can do is head towards the tiny flickering light I can see in the distance. I must jump, duck, slide, and fight hurdle after hurdle on my way to that light. That light is hope! Finally being able to see it, feels like I can put everything into perspective. I can breathe, and acknowledge that no matter how much I have to go through, no matter how much physical and emotional pain I have to go through, there is happiness at the end. I will get my happy ending!
I am the type of girl, who wont just sing in the shower, I will sing under my breath in the shop, I will sing at the top of my lungs in my house. Singing, for me, creates happiness. And if by chance I am singing a song from a Disney film such as Pocahontas or Mulan, then I am completely joyful and content. However, I cannot sing when I am unconscious I cannot sing when my body is bend backwards due to a spasm in my back, and my neck is trying to over rotate due to another spasm. Agony, causes me to have Non Epileptic Seizures However this weekends agony, took things to a whole new level.
Saturday night, my neck and back were awful. I could not move without setting a spasm off, and as soon as I had a spasm I had a seizure. It was a vicious circle. One that I have no recollection of. My mum ended up having to sleep in my room that night, due to the agony I was in and the lack of consciousness I had. Eventually I thankfully fell asleep and the spasms and seizures stopped. I had hoped that Sunday would be a better day. Despite my neck still insisting on spasming, the morning started off well. At midday, I unfortunately collapsed from standing, giving my head and body a good whack as I landed. Whilst the spasms were slightly more frequent, at first it seemed that this fall had not done much damage. However I quickly began to deteriorate. By 7pm the seizures had become constant, and the spasms wouldn’t stop. I was getting mere seconds of consciousness now and then, before slipping straight back into another seizure. My mum had originally thought that we would do the same as the night before and ride it out, however by midnight she phoned for a paramedic, who after assessing me phoned for an ambulance.
I arrived at my local hospital at 2am. I finally regained consciousness between 5 and 6 am. A doctor did not come to see me until 8 am! This particular doctor worried us. We were completely convinced that she was a crazy cleaner who had put on some scrubs and stolen a stethoscope. On seeing me she felt my forehead and told me I was beautiful, she then informed us that there was nothing she could do for me other than pray, which she then did. Now, I have nothing against prayer. I am Christian, and I appreciate people praying for me. However when I am in a hospital it’s not what I want or need! I need medication! If I was the doctor I would have tried administering muscle relaxants to see if they would take the edge of the spasms and in turn calm down the seizures. The doctor then told my parents that the hospital could do nothing for me and they should take me home, this was despite the fact I was still having dreadful spasms and could not sit up without going into a seizure.
My mother expressed her concerns to a nurse, who then called a consultant into see us. This man was rude beyond belief, if I had been well enough to argue or make a complaint against him then and there I would have. At one point during a seizure my mother tried to shield my head to stop me from hitting it against the metal bars on the bed. The consultant told my mum to stop it and that I would not hit my head, he refused to listen when my mum pointed out that I had already hit my head on them several times. He then started rambling on about the type of seizures I was having. My mum tried to point out to him that we already knew that I was having Non Epileptic Seizures, and that we were not concerned about them, we were concerned about the sudden change in my spasms and the way they had presented themselves so violently. The consultant listened to none of this and told my mum to stop talking. He was useless, arrogant, and down right rude!
We tried to get the hospital to call my consultant up in London to see if he could offer us any advice, but they refused to do this. My step dad had to do phone my consultants secretary instead and leave a message. Hours later, after my body had eventually calmed down, we left the hospital, with no help from them. I felt so angry and upset. I had been in extreme pain, and yet they did nothing. We had to do battle with them just to get them to give me some basic painkillers!! Once I arrived home I phoned my GP and explained the situation to him. He was extremely shocked at the lack of care I had received at the hospital and prescribed me some stronger pain relief. The whole weekend had left me feeling physically and emotionally broken. It was ridiculous.
Today, I had to go back to the hospital. Luckily this time it was just for an appointment with the surgical orthotic department. The man I saw was superb. He had dealt with Dystonia before and had a good understanding of it. After having a feel of my legs and getting me to stand up and show him the spasm, he said he thought he could help! He is going to make a splint that should hopefully prevent the spasms twisting my leg into painful positions. Whilst we there he made a plaster cast of my leg/foot, which should be ready for me in around 3 -4 weeks. He said that if the splint did not work for me then he would look at what other ways there were for him to help me! After telling him about the spasms my arm does, he suggested I get my GP to do another referral to him so that we can look at what he can do to help contain the spasm.
It was such a positive appointment. It helped me to not completely give up hope on Doctors and showed me that there are a handful out there who want to help you. You just have to find them. Both my neck and back have behaved so far today, which is fantastic and gives my body some much-needed relief. I feel slightly ‘normal’ again, to the point that I can see the distant light at the end of the tunnel. I can now relax and sing along to my favourite songs, knowing that no matter what happens and how bad it seems, there is always going to be something positive at the end of it. I just have to find it!
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