Tag: dystonia

Posted in Archive, January 2014

The Wonders of Medication

Posted on by dystoniaandme

It is amazing how well controlled Dystonia can be when you have the right combination of medications in you – for me Botox is the best thing, followed by a lot of Gabapentin! A year ago, I would have had a hideous amount of seizures due to jaw pain and would have struggled to eat, drink and talk. Now with regular Botox and other medications I am constantly my normal motor mouth self.

Everyone with Dystonia reacts to medications differently,for example I know many people find Clonazepam helpful but it causes me to become psychotic. Yet there is no one medication for Dystonia which makes treating it and getting it under control extremely hard. I am very lucky to see an excellent neurologist who is willing to inject me with Botox every six weeks, if he stuck to the usual every 12 weeks I would not be able to do half the things I now can.

On Monday I saw my GP to discuss IV treatment for Chronic Neurological Lyme Disease. I have been on oral antibiotics for around 8 months now and have had significant improvement in the areas affected by Lyme. After months of both myself and my neurologist asking him to set up IV treatment he has finally agreed to write to a couple of the local hospitals and see if they will treat me! This is fantastic progress.

My little Dystonia alien is all full of Botox and docile at the moment. I have been off my main painkillers for a few weeks and I have not had any bad pain episodes yet *touch wood*. I have also managed to come off one of my muscle relaxants, this is great as everything seems clearer and I feel like my memory has improved. As much as I do not like pickling my liver with all my medications I’d be lost without them. I am hoping that this stage of feeling like my Dystonia is ‘contained’ and ‘controlled’ continues, but nothing is ever certain in life especially with Dystonia, so I am focusing on enjoying every little thing each day.

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, December 2013

Orthotics, and Neurology Consultation

Posted on by dystoniaandme

Last Friday I attended my rescheduled Orthotics appointment. I was unsure whether there was anything they would be able to but my worries turned out to unfounded. The decision was made that no permanent alterations would be made over the christmas period as that would involve my splint being taken away. Instead elastic type material (but not as stretchy) was attached in a figure of 8 pattern to my splint over my ankle area, my normal velcro strap then went over this to reinforce it. If this design manages to hold my foot in place then my splint will be sent off to have these made permanent. At the moment it is looking positive and doing its job.

Yesterday I went up to London to see my Neurologist. He gave me my usual six injections, which have such a fantastic result. After showing him a photo of my foot in spasm that I took the other day, he has offered to next time administer some Botox injections to my calf and foot. I would be very interested to hear from anybody who has received injections at these sites!

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I am still taking medication to treat Chronic Neurological Lyme Disease, since I started these medications around six months ago I have had amazing progress in areas affected by it. So much so that my neurologist even remarked how happy and amazed he was to see the improvements. I am still, with the support of my neurologist, battling to receive IV treatment for Lyme Disease which will hopefully get rid of anything the Oral antibiotics have missed.

Everything seems to be quiet calm for once. Now that the Botox controls my most painful spasms I have been able to reduce the amount of painkillers and muscle relaxants I take. This has resulted in me feeling much more with it and my brain feels less foggy. It all seems to be calming down just in time for Christmas and my Birthday, which is perfect!

 

Posted in Archive, December 2012

Testing the Boundaries

Posted on by dystoniaandme

Since I became ill last summer, I have tried to be careful in everything I do. My body has limits and I have to learn to respect that. However it’s hard to keep within the limits when they keep changing, and when outside factors alter them constantly. I often tend to step over the boundaries, simply because I know that if I don’t test them now and then, I’ll never know what my body’s full potential is. Though I must admit I also do this simply due to craving the freedom my body once had. 

A couple of weeks ago the college phoned me and asked if I would like to attend the Clothes Show Live 2013 at the NEC in Birmingham. After a discussion with mum about if this would be beyond my bodies limitations I decided that I would go. I was extremely nervous as the furthest I have been from mum since I got ill is when I ride, and that’s not far at all. If something happened, I knew that I would most likely wake up in a strange hospital before mum could get there. A situation I did not want to end up in. Thankfully all my worries were for nothing.

I had two of my learning support staff with me to make sure I was safe and to push me around. It was a truly fantastic experience that I am incredibly thankful for. The college had booked a coach that had access for my wheelchair in, and for the main runway show we had the best seats! Other than the odd twitch and my right knee paralyzing on and off, which I’m used to now, my body was perfect. I think I have shopped for this years christmas presents and everyone’s birthday presents for next year!

I expected my body to have a complete meltdown today, but other than being very achy it’s behaved well. I have managed to go to the opticians and have a couple of Coke’s out in town with my family, without any issues.

Below is my favourite photo from yesterday :-p

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Posted in Archive, November 2013

Peace of Mind

Posted on by dystoniaandme

The last several days have been very busy and very positive.  I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.

This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten  colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.

When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that  when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.

So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me.  Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.

Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.

Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.

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Posted in Archive, November 2013

Unpredictable but Not Alone.

Posted on by dystoniaandme

“Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.

Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.

Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics  brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.

On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.

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Posted in Archive, November 2013

Busy Bee

Posted on by dystoniaandme

I intended to write this on Wednesday but this week has been extremely busy – I’m not complaining, I’m loving it, even if Benedict my Dystonia alien doesn’t. Between neurology appointments, college, horse riding and more college, I have been wheeling around like crazy, and sleeping fantastically well due to exhaustion.

I visited my wonderful neurologist on Tuesday, and got my six usual injections. Two to the eye area, jaw and neck. Receiving my injections makes me so happy that I have a trusting relationship with my neurologist, as I really dislike needles and would not let anyone else stick needles near my eyes! He even cracked a joke when cleaning the area with alcohol wipes that he was sorry it was not the good stuff…this really made me laugh as I’d just informed him I was going to try to come off some off my medications over the christmas period so that I could have a drink on christmas day, my 21st birthday and new year.

Whilst I was at my appointment my neurologist diagnosed me with chronic migraines. I have had what I thought were just normal but painful headaches for years. The opticians told me to tell my doctor but he just advised I drank more water which did not help. Recently I was having pains in the back of my eyes that have been so bad that I have had to shut them and go to sleep. I had been concerned that the pains were caused by my blindness, so have been relieved to have this diagnosis. He has promised to look into what treatment he can give me for them, so I look forward to my next visit.

Last week I hurt my back and neck when I had an episode of functional paralysis whilst sitting in my wheelchair – I ended up flopped out the side. This has resulted in a long recovery process. So I am extremely pleased that I have managed to cope with such a full on week.

Despite a repeat incident at college today, my back is not to bad! I find this reassuring as I hope this means that even though my Dystonia still acts up constantly, my body is finally getting used to all the extra activities I have started doing.

I feel like I have gone from drowning in this condition, to treading water, and now I have reached doggy paddle stage. I am not swimming up and down life like a good swimmer, but I’m moving around better, my head is firmly above water and I’m living life to the full.

Spasm Induced Blindness

I want to bring some awareness to one of my rarer Dystonia symptoms. My eyes do a few different spasm, sometimes they blink rapidly, other times they clamp shut, but more often they roll back into my head and stay there for long periods of time. Luckily Botox injections helps my first two spasms a lot so they do not really bother me anymore. However I go blind on almost a daily basis now.

When the blindness first happened last August it was only for a few minutes, it was scary but I could deal with it. A few days later I went blind for 15 hours, which resulted in 8 days in hospital whilst they checked for things like epilepsy and tumors. Needless to say those 15 hours of blindness were terrifying and I began to worry that my eyes would never roll back down to where they should be. Thankfully I have never had one as long as that since, but they do often last for hours at a time.

This particular eye spasm is not common in Dystonia sufferers. There is not much that can be done to help it as there is no way to Botox the muscles behind the eyes that cause it. Taking muscle relaxants makes a small difference, which is better than nothing. I try to be careful and stay away from anything that I know will trigger it  e.g flashing lights or bright lights.

Not a lot is known about this particular symptom so it is hard to know what to do to help myself. Even Dystonia websites brought next to nothing up. Last night, on one of the Dystonia Facebook groups, I managed to get in touch with several other women, some from different countries, who experienced the same thing. I cannot put into words the joy this brought me, how soothing it is to know you are not the only person out there who cannot keep their eyes in place. It is rather calming.

The photo below is from this weekend, the flash on the phone (that we thought we had turned off) caused my eyes to spasm and go blind. These spasms are very painful, and unnerving, but are something I am learning to live with as part of daily life. I am so thankful that I know that no matter how many hours my eyes are gone for they will eventually always come back,

Me with my eyes spasming causing blindness

Posted in Archive, October 2013

Recovery & Sensation Overload

Posted on by dystoniaandme

It never fails to amaze me just how long my body takes to recover from illnesses and accidents these days. Pre-Dystonia I was one of the those people who always had some of thing going on be it sinusitis or a broken bone, but I always bounced back. I fell and ended up in the hospital a week and a bit ago, and yet I still don’t feel back to my usual dysfunctional self.

Many Dystonia sufferers have informed me if they get an infection or have an accident it takes them longer than most to get back to their selves again. So I know I’m not alone, but its irritating. I’m still sore, tired and my spasms and paralysis are being triggered more than usual. I know I sound grumpy! I do not mean to, but lack of sleep and some new sensations in my legs have set my teeth on edge. At least I know I shall sleep tonight after todays Reflexology session.

A couple of days ago this new sensation hit my legs (knee down). It’s extremely hard to put it into words exactly what it feels like. It sort of feels like sharp pins and needles mixed in with a numbing sensation. I try my best to distract myself but the sensation is rather uncomfortable. Part of me wishes that it would hurt enough that my brain would disconnect from my legs so I that I would not be able to feel it just for a little while.

On a far more positive note I would like to thank the lovely people who have nominated my blog and Facebook page for a WEGO health activist award. It is extremely touching and uplifting! I have had a number of people ask me how to go about nominating me, I put it on my twitter and Facebook page, but for those who have not seen it, here is the link http://awards.wegohealth.com/ .