Tag: Non Epileptic Seizures

Posted in Archive, May 2014

Little Things

Posted on by dystoniaandme

The last week and a bit I have had a bad cold, which would normally be fine but as I have mentioned before Dystonia tends not to react well with other illness even if they are just small things like colds. This has resulted in a week full of a variety of spasms and a handful of pain triggered non epileptic seizures. My jaw has tremored quite a lot, I can only presume that the pressure in my sinus area has aggravated it and this is why it has played up more than normal. This in particular has caused the most pain as often my tongue gets bitten in the process.

In spite of feeling under the weather and my Dystonia alien being more mischievous than usual I managed to sit outside the house and enjoy the sunshine. This may sound rather simple, but it involves quite a maneuvering process as our house is not very wheelchair friendly. I normally don’t try to get out the house unless I am actually going somewhere as its hard to do and rather painful.To actually have achieved this without ending up in a hospital A&E department was extremely satisfying. I love being out in the sun, even if it is just for 20 minutes, it’s a nice change from being inside. Even though it’s a very simple achievement it is one that I am celebrating.

Posted in April 2014, Archive

Tea Party Fundraiser

Posted on by dystoniaandme

Saturday we held our Tea Party fundraiser for the Dystonia Society. The day was a complete success with many more people than last year showing up which was an incredibly uplifting sight. My body was still playing up a lot, this meant that I had several pain triggered seizures as my new leg spasm was aggravating the torn ligaments in my knee. However I view having these spasms in front of everyone as a complete positive, they got a good look at what Dystonia can do you.

A good family friend had offered to make a cake to raffle off for the occasion. She is very talented, and the cake looked so delicious! 

Our house was packed all day long which was amazing to see. The Dystonia Society had sent us lots of useful leaflets which we had put on display around the house, everyone seemed to enjoy these and it sparked lots of different questions. Raising awareness has become such a big passion of mine, so I was overjoyed at how successful the day was. One of the elements I loved about it was that the people who had come along could also ask members of my family questions and talk to them about it. Even though they don’t have the condition their lives are still affected by it.

In total so far we have raised £425.00 for the Dystonia Society and some more people have said they would like to drop in donations which will boost our total even further. I am so grateful to everyone who came along, it was such an incredible day.

This weekend my cousin David and his friend Sam are running the London Marathon to raise funds and awareness for the Dystonia Society. They are aiming to raise £3000! He was interviewed by his local newspaper the other day, which has raised more awareness of Dystonia! If you would like to read the article here’s the link http://www.thewestonmercury.co.uk/news/seaquarium_boss_inspired_by_cousin_to_run_marathon_1_3533729 .

Posted in Archive, March 2014

Neurophysiotherapy

Posted on by dystoniaandme

Today I had an appointment at Jacketts Field Neurological Centre for my neuro-physiotherapy assessment. I was slightly worried as I had heard very mixed reviews about the unit but was doing my best to go with an open mind. As it was an assessment I knew a lot of the time there would be spent answering questions verbally e.g how does your spasms affect your ability to swallow or do you have any walking ability? However some of it was going to be physical, this left me concerned as my body is currently in meltdown mode due to lack of Botox so moving about could be painful. Luckily my mother agreed to come with me which put my mind at rest, if the worst did happen and I had seizure after seizure and an ambulance needed to be called, I would be safe and my mother would be able to instruct them on what needed to be done – however all that worrying was for nothing as I didn’t have a seizure 🙂

After answering a lot of questions and having a good laugh with the physiotherapist, it was time to demonstrate just what my little Dystonia alien does to my legs. Figuring I would only have to take two or three steps with my walking sticks, plus the physio and my mum holding me up, I happily stripped off my splints and stood up. This promptly set off my spasms in my legs and the next things I knew I was on the floor! I had not even taken one step! Benedict obviously had been enjoying playing twister with my face and got his knickers in a right old twister when asked for my legs to join in…stroppy sod! As much as my body is now a little sore at least it gave the physio a good idea of what exactly I am contending with.

Due to how much my body does, the assessment did not get finished even though we majorly ran over time! So we have had to book another assessment in! I am really looking forward to this.

On a quick note this Saturday I am attending my local Dystonia Society Group meeting, this will be this first one I have been to and I am so excited to meet other people with my condition!

Posted in Archive, February 2014

Worrying

Posted on by dystoniaandme

I feel like I am balancing on the knifes edge and that at any moment I could fall. My Dystonia alien and my Lyme Disease had really managed to lull me into a sense of ‘normality’, and over this past week have decided to send me flying to the edge of the knife filled with dread. Up until very recently I had coped rather well with everything, but everything seems to have gone out the window now.

Whilst I have remained seizure free there have been a few moments recently where I have felt right on the edge of one. Last Monday my mother and my little sister spent half an hour looking after me and talking non stop to try to keep me conscious. This has not happen in quite a while and was a shock to all of us. My legs have been bad recently, to the point that last week I did not make it into college on either day, which was to me a big defeat in my battle against the two conditions.

Whilst the pain is bad and gets me down, it is the unknown that I struggle to deal with. My body has progressed and regressed so many times, and each time I deal with it. However it gets harder to do so each time, and right now I have no idea which way my body is going to swing. It may pull through this horrid period and be absolutely fine or it may take a nose dive.

I know there is not much I can do other than stay positive but I can’t help but be scared. Hopefully this is just a bad period and soon my mind will be put at rest.

Posted in Archive, February 2014

Positive Neurology Appointment

Posted on by dystoniaandme

On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.

I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.

I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.

This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.

Posted in Archive, January 2014

Happy New Year

Posted on by dystoniaandme

I would like to start by wishing everyone a slightly late Happy New Year. In regards to my health I have had a fabulous start to the New Year. Last New Years Day I spent in hospital having hours of seizures, this year I spent it recovering from the night before and watching a dvd with one of my best friends! I find it hard to believe how much difference a year can make.

On Monday I am visiting my GP to discuss my ongoing treatment for chronic neurological Lyme Disease. I have been on oral antibiotics for about 8 months now, but have yet to receive IV treatment which is what I need. The response my body has had to the antibiotics has been fantastic, so I can only imagine what my body will be like when I am cured of Lyme. My GP has told us before that the district nurses do not come out to administer IV in our area, which makes receiving treatment slightly problematic. I plan on asking my GP if there is anywhere he knows of that will treat me, even if I have to go privately. My health matters more to me than my money, as it is only by being cured of Lyme Disease and getting my Dystonia under control that I will get back to university.

I am extremely excited for the 28th of this month, when I next go to see my neurologist. At this appointment I will be receiving my normal Botox injections plus injections to my leg. The spasms in my leg are the most debilitating, so I am hopeful that the injections will improve this. The injections I receive regularly have such a fantastic effect and keep the affected areas working so well, which makes me hopeful for a positive response in my leg.

I would love to hear from anyone who has had experience with Botox Injections to their foot/leg, so please get in touch if you have these!

Posted in Archive, December 2013

Pain Free Celebrations

Posted on by dystoniaandme

Todays blog is only a quick one, but I just want to start it by saying I hope you have all had a fabulous Christmas. I have been extremely lucky and spent this Christmas and my 21st Birthday seizure free and with only a handful of spasms! I feel very blessed to have been able to spend both occasions in very little pain, especially as pain is 99% of the time my constant companion.

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Over the Christmas period I have felt the best I have in a long time. Between regular Botox injections for my Dystonia, antibiotics for my Chronic Lyme, and all the other meds thrown in, I have managed to reach an incredibly happy place. I have managed to reach a place where I am not scared to chew my food incase my jaw tremors, where I can speak clearly, where I can brush my hair without the brush getting stuck in my hand. I am in such a different place to where I was last year and I am so unbelievably happy.

Thinking back to last year, and then looking forward to the upcoming year I am filled with hope. So much has changed for the better this last year, and I hope it continues in this way. This time last year I had hoped that I would eventually learn to live with this condition, and in the space of a year I have learned to live with it, and tricks to sneak around it (the power of hot water bottles), I have learned that no matter how hideous things may seem it does get better, that I can have a life.  I have learnt so much, and I am sure I will learn more. In between kicking my Dystonia Aliens butt I plan on having as much as fun as possible.

Incase I don’t have time to blog again beforehand (I’m fantastically busy at the moment :-D) I wish you all a fantastic New Year full of joy.

 

Posted in Archive, October 2013

Ambulance Trip

Posted on by dystoniaandme

After two weeks of no seizures, and no ambulance trips since July, my seizure free luck ran out yesterday. Having had a fantastic day at college, I collapsed outside my house after my legs went into a bad spasm. I feel sorry for my poor friend who took me home that day as it was not a nice experience for her.

I gave my body a good whack on the ground when I collapsed, triggering my seizures. Normally with my Non Epileptic Seizures I come round, even if it is just for a second, between them. However yesterday this did not happen, I remained unconscious in between. Luckily my younger brother and one of younger sisters were at home, so they were able to bring pillows, blankets etc out  to keep me warm whilst my friend kept me safe.

An ambulance had to be called, thankfully I always tell everyone that I have a letter from my neurologist in my handbag instructing paramedics and doctors on what to do. This letter meant that the paramedics quickly administered diazepam to me. As I was remaining unconscious and had been unconscious for so long I was given oxygen and taken to the resus unit at the hospital, where I was monitored for several hours.

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I feel sorry for the first doctor in charge of me as he was very unsure of my condition and therefore seemed to feel frustrated as he was unable to help me. My body being its usual unhelpful self did its typical vein disappearing act. It took the poor man seven attempts to get a line in me and bloods out of me.

Despite this incident ruining my good streak, I am still viewing it as progress! Hopefully these blues and twos trips to hospital will continue to be less and less, until they fizzle out completely all together. It may take time, but it will one day happen. I am so thankful for my letter from my neurologist, I am sure with it out I would not have received diazepam so quickly, and that was much-needed to help bring me round.

I am now home and shall be spending the next couple of days recuperating from yesterdays events.

Posted in Archive, October 2013

Fantastic Neurology Appointment

Posted on by dystoniaandme

This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.

We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.

We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.

It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.

 

 

Posted in Archive, October 2013

A change in Tactic

Posted on by dystoniaandme

So my body seems to have decided to change its tactic. Normally when I am in a lot of pain I have a Non Epileptic Seizure. The last two weeks or so my body has disconnected from certain parts of me or all of me, leaving me functionally paralysed. I have had a handful of seizures as well but the functional paralysis does seem to be my body’s main coping mechanism now.

I am in two minds about this change. On one hand I am happy that there has been a decrease of seizures, as it means I am conscious more often, not forgetting hours either way of the seizures etc. On the other hand the functional paralysis can be rather scary. The first time it really hit me I lost the connection to the lower half of my face for 7 hours. A big part of me knew it was just my body coping with pain, but a small part of me was terrified that something worse was at play such as a stroke. When the functional paralysis comes out to play I either disconnect for one to two minutes or I disconnect for hours. There is no middle ground.

As I type my right foot is in spasm. It felt like the force of the spasm was trying to break my big toe. I was in a lot of pain and was beginning to think that I should be sensible and shimmy down the bed a bit so that I did not hurt myself if I ended up having a seizure. However instead of seizing both my legs ended up functionally paralysed despite my left leg having no spasm in it at the time.

I am seeing my neurologist on Tuesday for my injections and a chat, so am going to add functional paralysis to my list of questions. I’m not sure if there is anything he can suggest to help but he may be able to advise something. I think I prefer my body coping this way but at the same time it scares me slightly.