Tag: Conditions and Diseases

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, 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, 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/ .

Posted in Archive, October 2013

Top Tips to Beat Cold Induced Spasms

Posted on by dystoniaandme

The weather is getting colder and colder each day, and as my little Dystonia alien hates the cold and loves to spasms more I have been investigating different ways to keep myself warm, without looking like a marshmallow. I’m sure many of you know the feeling of when you have so many layers of clothing on, you begin to look less like a human more like a marshmallow. As I know many other Dystonia sufferers find the cold worsens their symptoms I thought I would share with you all my top three products that I have found helpful – and for those of you without Dystonia who are reading this, it may interest you as well, after all everyone likes to keep warm!

1) Tozies – I am one of those people who if my feet are cold the rest of me is cold. My reflexologist recommended I invest in some Tozies. Tozies are slippers which are double fleece layered, and without a hard sole on them. Not having a hard sole means I don’t worry about my spasms bending them out of shape. I have to say these are fantastic, I am actually going to buy a second pair, but this time  a microwavable version for the really cold winter nights that leave you shivering. I wear my Tozies constantly, some nights I even sleep in them, as I find if my feet are toasty warm then the rest of me does not feel as cold. If you want to check them out here is the link to where I purchased mine http://coziewarmers.co.uk/ladies-slippers-shoe-size-3-12-22-c.aspImage

These are my Tozies.

2) Reusable heat pads – are my second favourite method for warming myself up. They are pads with a metal bit in, they come in all shapes, sizes and colors. When you bend the metal an internal chain reaction is set off which warms the pads up and causes them to harden. The warmth lasts for several hours. I have taken to wearing these pads in my shoes under my feet and inside my gloves. To reuse them you simply put them in a pan of hot water for a minute to return them to their original state. It’s a cheap, but effective method.

3) Thermals – Now I know saying wear thermals is an obvious one, but in all honesty how many of you actually remember to put some on under your clothing? I purchased some thermal socks, leggings and vests, and make sure I always have at least one, if not all, of them on. I got my thermals fairly cheaply off marks and spencers (you could probably get them even cheaper if you shopped around). It’s an obvious, but often overlooked, step to keeping warm.

I am always searching for ways to keep warm, to avoid the extra spasms that the winter brings. I hope some of these ideas helps those of you who find the cold causes extra issues.

 

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.

Posted in Archive, October 2013

Short Term Goals

Posted on by dystoniaandme

As I have mentioned before my body does not react very well to me getting ill, even colds cause my Dystonia alien to act up more than usual. Therefore I have spent today spasming, having seizures and trying to find the energy to get things done. I have not slept well the last few nights which I know will be aggravating my symptoms – thankfully I have reflexology tomorrow which should help with my sleep.

I have spent a lot of time thinking today about goals. I have lots of long-term ones that I am determined to achieve, but it occurred to me today that I also needed short-term ones as well. Goals that would keep me motivated even when I am feeling under the weather and my body is at its worst. I have decided that my first goal will be to be to walk in my splints around the house by Christmas without crutches! As I am starting neurophysiotherapy soon I see no reason as to why this cannot happen. I was walking around the house last Christmas and I shall, with the aid of my splints, be walking by this Christmas.

There is a girl on my college course who I find very inspirational. Despite being young (17), she is coping amazingly well with a combination of different conditions. One of her issues is that she cannot feel her legs – she has some very limited feeling in her upper thighs but that’s it and yet with the help of crutches she walks. Now most of the time I can feel my legs, and I have the extra help of splints, so it is time to put them to good use and start walking!

ImageI know that I may not be able to walk every day due to my Dystonia aliens games, but I will walk as far as I can every day, whether that only be walking 2 footsteps or walking for 2 hours, I shall every day walk! And I shall do this by Christmas!

 

Posted in Archive, September 2013

Functionally Paralysed

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Terror. That one word sums up how I felt for 7 hours last night. My face had not been good for most the day, and by the evening my tongue didn’t want to stay inside my mouth and my jaw was slightly deviating. This eventually became rather painful so we resorted to Oramorph and I tried to take a nap in the hope of sleeping the spasm off. However the symptoms I woke up to terrified me to the point of tears.

My brain had disconnected from the lower half of my face leaving me functionally paralysed. This meant I could not open my mouth, talk, eat, drink, swallow, take meds etc. I could do nothing, and I could feel nothing. I was terrified. Now I’ve had a similar thing happen to my legs before but whilst that unnerved me I could deal with it as I could communicate what was going on and they always came back fairly quickly. However this time it took 7 hours to come back and with each passing hour I grew more and more scared. I had no idea what to do.

Doctors have no idea why this happens hence the term functional put in front. My neurologist thinks that for me this is my body’s way of coping with pain. When the pain triggers a response from my flight or fight system, my body chooses to flee by shutting itself down. I have no control over this and it scares me. The medication that can help with it I am unable to take as it interacts with other medications that I rely on.

Last nights 7 hours of facial functional paralysis was a new level of fear. I had no idea what to do. I could not communicate my fear. I tried my best to sleep, in the hope that relaxing and resting would help. However I found it very hard to relax and get to sleep. I managed some sleep but it was very on and off, every time I woke up to discover that it was still paralysed I became more unsettled.  Thankfully at 3am my brain reconnected and I quickly took all the pain meds I could and went back to sleep.

This morning everything seems to be working, however I am on the weary side of it all, and still rather nervous. I am only eating very soft foods and trying not to talk to much to try to avoid triggering anything else off. Luckily I have an appointment coming up on the 8th with my neurologist so I can discuss this incident with him and get an idea of what to do should this happen again – hopefully it won’t.

I hope that I shall never experience this disturbing symptom again.