Tag: spasm

Posted in Archive, May 2013

Dystonia Alien Gets Creative

Posted on by dystoniaandme

My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved.  The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.

My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.

I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.

I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.

I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself  and have more energy to fight Dystonia with!

Posted in April 2013, Archive

Bring It On!

Posted on by dystoniaandme

Yesterday afternoon I collapsed outside of my house and started having Non Epileptic seizures and Dystonic spasms. As I was not regaining consciousness I was rushed by ambulance (with blues and twos on) to my local hospital, where I was luckily treated by the lovely doctor who I had seen the last time I was there. The doctor remembered exactly who I was and even where the best place to take blood from me was! I was extremely impressed with how I was treated. I was unconscious for a couple of hours and have very little memory of the event.

Today I am rather sore, but I am also feeling inspired! My illness repeatedly puts me through hell and back, but its ok! I know that no matter what my little Dystonia alien throws at me, I will get through it. The image below depicts exactly how I am feeling.

Whilst Dystonia and Non Epileptic Attack Disorder are truly hideous conditions to have, I could be so much worse off. I could have cancer or another potentially life threatening disease! So I feel blessed that my condition merely limits me.

Through being ill I have had the privilege to talk to and meet some of the nicest people I have ever met. They all support me and give me strength! For example other bloggers and health activists; talking to them is a joy, as they can understand, advise and support me. Another great example are the amazing staff in the chemist by my doctors. I love going in there as I always get a warm welcome and have a quick chat, which puts me in a great mood.

I may suffer from a hideous condition, but I am so much more than just an ill person. I am a health activist, a fighter, I can be anything I want, and I can achieve anything I want. Just you wait and see!

 

Upcoming Hospital Admittance

On Tuesday I wrote an email to my consultant, explaining that now my whole body was being affected by my dystonia and that I no longer knew what I was expected to do. I have tried to bring a number of positive activities into my life and carry on with everything as much as possible without letting my Dystonia affect me, however all of these activities are rather hard to do when your whole body is out of your control. I asked him for advice, and if I he could refer me to anything or suggest anything I try. Yesterday my consultant neurologist replied, he apologised for how hard it was to get me treatment due to long waiting lists, and has offered to take me into the hospital for a few days (up to a week). Whilst in the hospital I shall see him and the Neuro-physiotherapists. I am rather hopeful that this shall mean that  I shall come away from my short stay there with a better idea of how to cope/work around my spasms.

I also received a couple of letters from my consultant in the post yesterday. One of them was a letter for us to take when ever we go to hospital/A&E, so that the hospital know how to treat me. He sent us several copies of this letter, which I am extremely thankful for, as it should enable me to receive the correct treatment with ease from them. Another letter was a copy of the one he has sent to my GP, explaining the treatment he is currently giving me (botox injections to the jaw and neck) and that he wanted me to start me on Clonezpam. I had mentioned to my GP the other day about the fact my consultant wanted me on this new medication, but because I did not know the dosage he was unable to prescribe it for me. This now means that I will be able to phone my GP tomorrow and ask him to prescribe it, as the dosage has been written in the letter. I am rather excited to try this new medication, as it should hopefully prevent my Non Epileptic Attacks.

I am feeling ever so happy today, as I feel like this upcoming hospital admittance, and the new medication should do me the world of good. Knowing that there is a plan in place is a very calming thought and I feel like I can relax and not worry about my little Dystonia alien as soon the right people will be able to see his antics and help me.

Posted in April 2013, Archive

Dystonia: Its a bit of a roller-coaster, would you scream or enjoy the ride?

Posted on by dystoniaandme

In life everyone has their own hopes, dreams, demons and struggles. We each suffer and achieve in situations others would not. None of us, are the same, yet we all judge each other and ourselves harshly.  As a society we are very quick to overlook all the positive and beautiful things that surround us, we focus intently on negativity like vultures. If you are not careful, the pessimistic world that we live in can appear suffocating.

Yesterday I decided that I felt well enough to push myself around a Garden centre that we visited. I was over-joyed that I was pushing myself for so long without setting off a spasm in my hands. I even managed to push myself up a slope for the first time. Now I know that does not sound impressive but it was a fantastic achievement for me, that I am very proud of. It took me a good minute to get myself up it, but I did it myself without any help!  I was having a great time,  and even had a sense of freedom due to pushing myself. However a handful of people who I came across that day, did not see the girl achieving her goals and enjoying a new sense of freedom, they saw someone who was slowing them down, a few tutted or stared as they paused to let me pass. Now I just smiled sweetly each time, as I was having too much fun to pause and give them a lecture on Dystonia. I wish those people had taken the seconds that it took me to wheel myself past them to appreciate some part of life instead of focusing on a negative, we were in a garden centre, a place where they could have easily focused on the beauty of nature.

Dystonia, like life, is one giant roller-coaster that will take you from feeling on top of the world to rock bottom in a number of seconds. You can choose to become a vulture like the majority of society, feed off endless negativity and suffocated in it. Or you can choose to accept there are days when you’re not going to be on top of the world and things will look bleak, but you can still take the time to appreciate what you have in life. I could very easily roll over and feel sorry myself, and stop trying to defeat this hideous illness. Instead I fight day and night against Dystonia, I try my best to be optimistic (though some days I can be a bit grumpy), I appreciate everything this illness has done for me e.g brought me closer to my family, showed me friends in the unlikely places and much more.

Dystonia is a challenge, and I plan on enjoying every little achievement I make. Small steps can lead to big things, who knows where I’ll end up.

Posted in April 2013, Archive

Twisting Limbs

Posted on by dystoniaandme

On Sunday afternoon my ‘good leg’ spasmed for the first time. I choose to simply ignore this, as I was having lots of spasms and seizures as it was. Other than having the odd spasms in a toe or two yesterday, my leg and foot were fine, and I choose to completely forget about it, as I felt there was no use in getting wound up over something that may or may not cause an issue.

However I woke up this morning to the bottom half of my leg and my foot in spasm. I breathed through the spasm and tried to think of calming thoughts. Once it relaxed I once again pushed it to the back of my mind and tried to go back to sleep. However any chance of having a peaceful day was destroyed when I woke up. My step-dad had been accidentally locked himself out, so I got up to let him in. What would normally be a couple of quick hops on the crutches to the front door, took a painful minute or two. My left leg was spasming badly and I struggled to balance myself and avoid setting off a spasms in right leg.

A similar situation arose later in the day when I got up to go to the other room. I really struggled to move at all. Which sparked a great deal of panic in me. I rung my GP and left a message asking for him to call me back, I knew that he would not be able to offer much advice, however the question he asked in response to my statement about my leg was “are you able to eat?”. I now have an appointment to see him tomorrow morning, I hold little hope for this though due to his earlier comment, after all since when have I used my leg to eat?

I am trying to stay calm and have mediated several times already today, however I have not been able to relax. Part of me is worrying about how I will be able to mount when I go riding on Thursday (I am going to go no matter what and plan on medicating myself to the max) and another part of me is having a break down over the impact that this is going to have.

I have tried standing in different positions over the day and if I stand on the side of my foot then this works to a point. It enables me to hobble around a little bit but I have no idea what else do. My whole body is now completely out of my control and I cannot stand it. I do my best to try to stay positive every day and fight against the spasms, but I am beginning to feel like I have fought one battle too many and they feel like they are never-ending.

However despite all my pessimistic thoughts I refuse to give in, I will keep trying to find new ways to get around the spasms. In the mean time I shall occupy myself with hounding the NHS for some form of treatment as I’m beginning to feel like I am drowning in a sea of untreated symptoms. I do not want to spend my days in bed, I want to be out and about!

Today marks the beginning of yet another battle against my Dystonia alien.

 

Posted in April 2013, Archive

Exciting & Empowering Day

Posted on by dystoniaandme

Today has been such a fantastic and empowering day! I had been looking forward to today all week as I had planned to go out and see a few friends and then have a personal training session. Normally my friends would come to see me, and I would sit in the middle of my bed so that if I do have a Non Epileptic Seizure I am safe. Instead I went out to my friend’s house, and my mum left me there on my own. This was the first time I had been left in someone else’s house on my own since July 2012. This excited and scared me. It turned out that I had no reason to be scared as it went perfectly. I spent the time sitting down, laughing with them and for a few hours felt like a normal 20-year-old. This has given me confidence to venture out more, I know that eventually my little Dystonia alien will act up but I cannot let the fear of that keep me from trying to establish a normal social life.

I had not been able to see my Personal Trainer for a few weeks as my spasms had been so bad and more of my body had been affected (only my left leg is unaffected now). As usual I was really looking forward to today’s session. I love our sessions as I am doing something proactive that not only challenges my little Dystonia alien but makes me feel positive about myself.

In today’s session my dystonia attempted to act up, and we worked around it. I paused when the spasms made it to hard to do that particular exercise but carried on as soon as it released. It was an extremely good session and I only had one tiny Non Epileptic Attack and a handful of spasms in it, which I thought was fab considering it had been a few weeks and my body’s not been great recently.

My Personal Trainer and I had previously discussed trying out a TENS machine to try to counteract the spasms. Whilst my hand was in spasm, he put the TENS machine up to full power and within a few seconds the spasm in my hand had released. The theory behind this is that to use a set of muscles another set has to relax, so by stimulating the relaxed muscles the spasming ones had no choice but to relax. The positive outcome it seemed to be having amazed me, it was like having a remote control for my Dystonia alien. I have no idea if this will happen on other parts of the body or if stronger/different spasms will react so positively, however this is an exciting experiment that I am going to enjoy greatly. I am planning on videoing my hand in spasm and how the TENS relaxes it, so that I can show my consultant.

If anyone has tried using a TENS  before for Dystonia please let me know, I would be extremely interested to hear how you got on with it. You can get in touch with me by either commenting on this post or by going to this page https://www.facebook.com/dystoniajourney where you can inbox me privately or comment publicly.

 

Posted in April 2013, Archive

A glimpse into the consequence of pain

Posted on by dystoniaandme

Normally if you are in pain or need help for some reason, you are able to call out or make a noise/movement to indicate that you need someone to assist you. I cannot always do this and to be honest it terrifies me. It is one of my bodies latest tricks. I class it as one of my Non Epileptic Attacks, even though it does not look like a seizure.

It will start with a spasm somewhere in my body, as usual I will try to ignore it and try not to get wound up. Then, if it is a bad spasm/spasms comes the agony.

Picture this, you are lying on your bed reading, ignoring the searing pain that is consuming your right leg. Suddenly the book falls from in-between your fingers. You frown, there is no spasm in your hands, so why did it fall. You have not realised that your eyebrows never moved when you frowned. You go to reach down to pick up your book, but your arms don’t move. You try to wiggle your fingers, but again they do not move.

Your getting a bit concerned now. Taking a deep calming breath, you order yourself to stay relaxed, there’s no point getting worked up as you know it will do you no good. You decided to lie on your back with your eyes closed, so that you can day-dream peacefully until your body responds better. That’s when you realise that you no longer have control of any part your body. You are stuck on your side, your arms frozen in the position they were holding the book. You cannot move. Your eyes are stinging because they are no longer blinking. Your eyes can only take so much before they spasm upwards due to the pain.

Now you are blind, unable to move and in agony. You try to yell for help, but your lips do not move and no sound comes from your throat. You are locked in your body. Unmoving, making no sound. You can feel the panic levels rising, you try to control your breathing and keep calm, but its hard. The pain from the spasms in your leg and eyes are only getting worse. You want to scream but only silent tears run down your cheeks. You can hear people in the house, they think your fine. No one will know what’s happening unless they come to check on you.

The minutes are slipping past so slowly. You have only your mental voice for company. The panic is getting worse, as is the pain. By now you know that unless someone comes to help you soon, the unconsciousness of a Non Epileptic Seizure will soon engulf you, silencing the one part of you that is still free, your mental voice.

You can feel the unconsciousness creeping up on you as the pain gets worse, its like a slow fog creeping across your brain. You can feel that your state of awareness is slipping away bit by bit. It won’t be long now. You know that there is nothing anybody can do to help you. A small part of you is welcoming the creeping fog, in a sick way it will help.

Its getting hard to think now.

The fog finally consumes you.

That is a glimpse into the latest torture that I put up with. Sometimes the unconsciousness helps, and when I regain consciousness I’m ok, other times this goes on for hours and hours, and it is truly terrifying. It takes severe pain to cause it all, and part of me is now extremely frightened of feeling pain as I know what may come with it. All I can do is hope that each spasm will not be too bad, and if it is bad, try to relax.

The sun is shinning today, and I’m taking that as a good omen for a hopefully pain-free day.

 

Posted in April 2013, Archive

Trip to the Consultant

Posted on by dystoniaandme

On Tuesday I went up to London to see my consultant, I went armed with a notepad full of questions. I must say that I was extremely pleased with how the appointment went. I felt that my consultant listened to all of my concerns and really wanted to help me.

After explaining to my consultant all of my new symptoms and how they have resulted in an increase of Non Epileptic Seizures due to the pain, my consultant had a couple of ideas. First of all, after demonstrating to him how my neck spasms (it goes down towards my right shoulder, whilst rotating left, so I am in a sort of diagonally skywards position), he decided to administer Botox to my neck.

He administered the first lot of injections to my jaw to help relieve my Ormandibular Dystonia, this was relatively painless. He then went onto my neck. I expected this to be fairly painless as well. I was wrong. It was painful, I feel sorry for my mums poor fingers that I was already squeezing as I really do not like needles that are aimed at me. However I would rather have a couple of seconds of discomfort than hours of a hideous neck spasm.

My consultants second idea, is to introduce Clonzepam into my medication cocktail. At first I shall only take it when I think I am about to have a seizure. If that does not work then I shall start taking it nightly. His theory is that when I am in severe pain, my body goes into fight or flight mode and my bodies way of fleeing is by going into a Non Epileptic Seizure, therefore the medication should prevent my body from feeling like it has to fight or flee.

We discussed the role of dopamine, and he feels that my Dystonia is not dopa-responsive, so does not want to do a trial of levadope. Whilst this is disappointing, I can understand why he feels this, I know that I was only hoping I could try it, so that if did work I would be able to return to university in September. However I am not totally giving up on this idea. From the way my consultant spoke I was given the impression that many treatment avenues are closed for me because of the Non Epileptic Attacks. I am hoping that if the Clonzepam does its role right and stops them, then my Dystonia will be able to viewed in a light that is not tainted by them, it is at that point that I shall bringing up trying Levadope again.

For now I am going to sit back and count down the days to April 18th, when my riding lessons start-up again. I cannot wait to get back to it, its my happy place.

 

Posted in April 2013, Archive

Easter Day + Consultant news

Posted on by dystoniaandme

Every Easter my family and our family friends go Egg Rolling. It’s always a great morning out. We decorate our hard-boiled eggs and then compete to see whose roles furthest without smashing. I was slightly worried about how my egg would look considering my hand hates my holding pens, however despite my hand spasming my egg turned out pretty well.

We went up to the local woods, and took the supposedly wheelchair friendly path round. I went wrapped up in several layers of clothes, two blankets and had two hot water bottles on me. It was so cold that snow from several days ago was still on the ground. I am happy to report that I survived the cold despite a few spasms and seizures – that’s another point to me Dystonia alien. It was so nice to be out and about.

Above is a picture of my egg. I’m rather proud of how well it turned out despite my spasming hand :-).

I am also happy to report that my consultant has been in touch and has agreed to administer botox injections to my jaw tomorrow! I am still waiting to find out a time, however I am extremely relieved to know that it can be done so quickly! I shall take advantage of this appointment to discuss with him the recent sudden changes in my condition.

I am exhausted but feeling much happier knowing that tomorrow I get to see my consultant!