Tag: treatment

Posted in Archive, May 2014

Generalised Dystonia

Posted on by dystoniaandme

Generalised Dystonia usually occurs in late childhood/early teens, it is unusual for it to start after the mid twenties have been reached. In the majority of cases symptoms will progress for about five years before stabilising. I was 19 when my Generalised Dystonia started, it started in my Jaw and then spread rather quickly. Though I had an episode of Oromandibular Dystonia back when I was 17.

There are several possible reasons why someone may develop Generalised Dystonia. In some cases it is referred to as Primary, this is when there is no identifiable cause other than genetic factors such as a mutation in the DYT1 gene. Secondary Dystonia is when there is an underlying cause for example another medical condition, stroke etc.  Dystonia can be inherited, there is a 30% chance of developing the condition if a person has the mutated gene. There are several other genes which can cause Primary Generalised Dystonia.

Treatment of Generalised Dystonia normally involves a combination of Botox injections and medication. I find a combination of muscle relaxants and six weekly injections, extremely helpful. Levodopa is usually trialled for around two months to see if the Dystonia is Dopamine responsive. Deep Brain Stimulation is also used to treat the condition and can make a huge impact to the sufferers quality of life. Selection for this however is done very carefully to make sure that the patient is likely to benefit from the treatment as the surgery obviously carries many risks.

Below is an image of one of full body spasms.

Posted in Archive, May 2014

Raising Awareness

Posted on by dystoniaandme

Raising awareness of Dystonia is vital. The Dystonia Society’s website says that an estimated 70,000 people in the United Kingdom have the condition. Considering just how many people this is, it is still such an unknown condition to both the public and the medical society. By raising awareness and funds more research can be done. Dystonia may not be life ending but it is life limiting. Without research there is no improvement in treatments for the condition and there is no cure.

When I became ill with the condition I had never heard of it, I had lived my life blissfully ignorant. Now it’s fast approaching the two-year mark of my being ill. Dystonia may have taken away many things from me but it has also inspired me. The only way change will happen is if we bring it around. We can sit and moan about Doctors not understanding the condition all we like, but what difference will that make? By actually having the condition and experiencing it we can choose to empower ourselves with knowledge and spread awareness.

I spent yesterday sat in my College canteen raising money and awareness for Dystonia. The age range of students at the college is from 16 to mature, yet all no matter how old or young were prepared to listen to what I had to say and asked lots of questions. I went with lots of leaflets that The Dystonia Society had provided me with and every single one of them got taken by people wanting to go away and read more.

Awareness is key to a cure being found and weeks like this one are the perfect time to do it. Tea parties, joining in with campaigns like the Go Green for Dystonia  one or getting involved with Thunderclap, are all so easy but so effective!! Dystonia Awareness Week is not over until the 11th May, so if you’ve not joined in yet, why not now, every voice counts! https://www.thunderclap.it/projects/9777-dystonia-awareness-week

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, July 2013

Spasms, Seizures and Specialists

Posted on by dystoniaandme

Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.

As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.

This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.

This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.

Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!

 

Posted in Archive, July 2013

The Harsh Reality of Living with Lack of Treatment

Posted on by dystoniaandme

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!!

 

Posted in Archive, July 2013

Countdown to Consultant appointment

Posted on by dystoniaandme

I am now on the final countdown until Tuesday when I have an appointment up in London with my Neurologist. Over the last few days I have gathered lots of different information so that I will be able to present a concise, confident and convincing argument to him. I do plan on letting him administer my Botox injections first though before getting into any debates with him!

I have a number of issues that I need to discuss with him. The first being the timing of the injections. When I see him on Tuesday I will be 6/7 weeks over due for my injections, this is ridiculous especially as the spasm and tremor in my jaw is actually now loosening my teeth! He has always insisted that the best and quickest way to get an appointment is by emailing him, however the recent months have proved this method to be useless so I shall not be leaving the hospital without an appointment.

Another issue I would like to discuss with him is Lyme Disease treatment. I am currently on oral antibiotics, however for late stage neurological Lyme Disease a mixture of different high dose IV antibiotics is needed. I asked my GP about this the other day but he wants me to get my consultants approval for the go ahead first. I am not sure how likely I am to get it, but I am going to try my best and will not give up easily.

I feel this appointment will decide if I shall stay under his care or not. As much as when I am with him I love him and have confidence in him, since April he has let me down. He has dangled hope in front of me and then never come through on his offer. I know this is not deliberate but at the end of the day I need to be under a consultant who can provide me with the treatment I need at the correct time and who will stay true to what he says.

I am very much looking forward to Tuesday though as I will finally get my very much needed Botox treatment for my Oromandibular Dystonia and my Cervical (neck) Dystonia.

 

Posted in Archive, June 2013

Which Open Door Shall I leap through?

Posted on by dystoniaandme

Despite it being the third most common movement disorder Dystonia goes almost unknown to the public. It lingers in the shadowy background letting its brothers, Essential Tremor and Parkinson, take the limelight. By slithering along in the back alleys it can prey on its victims with ease, bringing devastation to those it touches. The medical profession cowers in its presence, refusing to open their eyes and admit what they are seeing, they send you to a psychiatrist instead, not understanding that this just gives the Dystonia more time to make itself at home in your body and wreak havoc when it sees fit.

By the time the Consultant realises it is Dystonia, you have already been suffering for so long. The spasms leave you drained from the pain, and you are desperate for any sort of relief. Then it seems like a miracle has happened, the consultant whips out a tiny bottle that brings promises of relief from the spasms, the pain, the fight. A few injections of this will sort you out, he promises, he tells you it won’t cure you and you will need it again in three months. You are over the moon, such a long period of relief seems too good to be true. The consultant, who seems to hold all the answers you have searched for, does not warn you that one day you may be fighting him.

Five weeks into your pain-free period agony grips your jaw, the spasm pushing it across to the point you’re sure it will dislocate. Emotions run through you: anger, sadness, heartbreak, devastation. No one warned you how hurt you would feel when the Dystonia reared his ugly head agony. You count the weeks on your hands repeatedly, this should not have happened for weeks yet. As the reality sinks in that you still have to wait at least 6 more weeks for more of the injections numbness sweeps through you. You feel so tired. A small part of you wants to curl up in a ball on the floor and cry.

You try desperately to contact your consultant but he ignores your pleas for help. Who do you turn to now? There are many open doors you could run through, but which one holds the key to help? Who will help you now? How many more Consultants are going to abandon you after dangling hope in front of you?

Which open door shall I leap through?

Posted in Archive, June 2013

Consultant Update

Posted on by dystoniaandme

The last couple of days by spasms have been extremely painful which has resulted in an increase of seizures. My necks spasms in particular seem to set these seizures off. Even though the increase in neck spasms is hideous it shows just how much of an incredible effect the Botox had for me. The Botox decreased the severity and frequency of them dramatically.

I finally heard from my consultant the other day. I received an email saying that he would contact me with a date for my Botox injections, I am hoping that this will be soon. He did not address the fact that despite on April 5th he said would admit me for a week and still hasn’t. I have started to accept that fact that this is rather likely to never happen, which I am disappointed about.

I have started making a list of questions I want to ask him. I would like him to consider the fact that Lyme Disease can cause Dystonia and that it could be the root of my problems. I plan on asking him to remain open-minded during the appointment as well, as I would like to discuss with him again certain medications I would like to try. I also want to have an open discussion with him about Deep Brain Stimulation (DBS).

Whilst there is a possibility that my symptoms could improve if it turns out I have Lyme Disease, there is still a real possibility that some of my more debilitating spasms such as the ones effecting my legs could remain in the same state as they are now. I just want my consultant to consider it. I am not asking for it just yet and I would happily try all the medications and jump through all the hoops they want me to first. However at the end of the day I would rather not spend the rest of my life in a wheelchair, and whilst DBS does not offer a cure, it offers the possibility that I may not have to rely on the wheelchair all the time. I am hoping that he will understand that I don’t want him to say yes or no just yet, that I just want him to have a think about it.

One thing I have learned through all of this is that if you don’t ask and plant that little seed in the doctor’s mind then you definitely won’t get it. If, however, you plant that little seed it may just grow into a real treatment avenue which could offer hope. There is no harm in asking!

 

Posted in Archive, June 2013

Rare Conditions, Doctors and Reflexology

Posted on by dystoniaandme

Since I posted my blog post about Lyme Disease and Dystonia I have heard from a variety of people who have Dystonia caused by Lyme Disease or have both Dystonia and Lyme Disease. It has been extremely interesting reading people experiences of the two conditions. What has shocked me is how common this ‘rare’ disease seems to be!

I was doing some research on the two conditions earlier today when I stumbled across a blog written by a Lyme sufferer. She, like so may Dystonia sufferers do, has had to fight and battle against the NHS for treatment. Again she unfortunately has had the same experience that many Dystonia sufferers do in that a neurologist misdiagnosed her as having a ‘Functional Movement Disorder’. The more I read about these supposedly rare conditions the more it seems that the moment a doctor feels a little bit out of their depth they slap the label Functional on to their patient without listening and without further testing. From what I have read this often causes sufferers to question themselves! Whilst I understand that some people must have Functional disorders, many people don’t and are wrongly labelled as so, which causes problems when it comes to receiving correct treatment. It is frankly disgusting.

I came across an article earlier today which listed the neurological symptoms of late stage Lyme Disease and I ticked all but one box. Which has raised my hopes just that little bit more, that I may have found the cause to my Dystonia. It even offers a bit of hope that one day with treatment I may be lucky enough to have some improvement.

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Today I have felt rather under the weather, with my spasms being completely out of control. This has left me feeling exhausted and craving sleep. I have unwillingly refused to let myself sleep all day in the hope that I will manage to get a decent nights sleep tonight.

Yesterday I had my second reflexology session which was once again heavenly. It left me extremely relaxed and sleepy. I managed to get 12 hours sleep which was very much-needed. I am arranging for my next session to be done in the evening so that afterwards I can snuggle straight into bed and go to sleep. My reflexologist was hopefully that if we did an evening session so I could go to sleep afterwards then the benefits of the session may last a few days longer, which would be fantastic!

I cannot wait for my next session.