Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘Tremor’

Chronic Lyme Disease

I have put off writing this blog post for a few weeks now. Not because I didn’t want to be open about what I’m currently experiencing, but because putting it all down into words makes it all very real and I am finding it extremely hard to deal with. As I have mentioned before the doctors believe my Dystonia is caused by damage to my brain by Lyme Disease. I contracted Lyme Disease when I was six and have been on oral antibiotics for it since May last year.

A couple of weeks of a go I finished the last of my oral antibiotics. Although I had been told that realistically I needed IV antibiotics to cure my neurological Lyme disease, I had hoped that a year on oral ones may have been enough. Unfortunately it had not been and over the last few weeks my hand spasms, back spasms, vocal tics, fatigue, on/off functional paralysis etc have all come back. I have been coping with this the best I can, its been coming back slowly so I have had a chance to ‘adjust’. However now and then spasms will happen and I will have a bit off an emotional wobble. I cannot write anymore, I struggle to do my make-up, getting dressed has always been hard due to my Dystonia but throw in Lyme Disease and it takes most the morning to accomplish on a bad day. Yesterday I was just trying to pay for an item in a shop and my hand spasmed around the card reader, I could not let go. My friend had to try to yank my hand off it whilst the till worker pulled the reader out. I was mortified!

Yesterday I visited my GP who does not believe in Chronic Lyme, my mother and I went prepared to do battle. He is normally very dismissive of anything to do with Lyme Disease and had previously said to me that even if my symptoms came back he would not be willing to prescribe me anymore antibiotics. Thankfully he seems to have had a slight change of mind and has give me 2 more months worth. In this 2 month slot I have an appointment at a private hospital that are known to treat Lyme Disease, I am hoping that they will be willing to give me the IV antibiotics that I need to cure me. I am not sure how likely it is that I will get anymore antibiotics off my GP after this 2 month supply runs out. I started them today, and should hopefully see an improvement in the next few weeks. For now I am keeping my fingers crossed that this private hospital pulls through!

On a much more positive note I had my Botox injections last week for my Dystonia which means my jaw and neck will be in place whilst I am on holiday!

Advertisements

Little Things

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.

Cervical Dystonia

Cervical Dystonia is when the spasms are in the neck, this can be quite painful and can result in awkward neck postures.Generally the spasms will cause the head to pull to one side, backwards or forwards. In my case my head pulls down towards my left shoulder but with a forward twist. I also have a no style tremor to my neck. It is the most common form of Dystonia and according to The Dystonia Society is currently estimated to affect around 18,000 people in the UK. Like most forms of Dystonia if it occurs in adulthood then it will hopefully remain in just that part of the body.

The most effective treatment for Cervical Dystonia at the moment is regular Botox injections, though how well this work varies from sufferer to sufferer. I receive regular Botox injections to both sides of my neck and it has had a massive impact and helps me keep my head fairly straight  whilst the Botox is working. Medications such as muscles relaxants can provide people with some relief as well. Pressure being applied to specific points around the neck and face in some people is beneficial but this is not the same for everyone.

This image demonstrates some of the positions the spasms can pull the head in to.

Fantastic Neurology Appointment

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.

 

 

Video

Jaw tremor

A few days ago my jaw tremor returned, it is an on/off tremor at the moment and the more I use my jaw the more it tremors. I am using a baby teething dummy to protect my teeth and tongue, however the pain it triggers when the tremor causes my bottom teeth to bang against the tooth it has loosened on my upper row of teeth or my tongue often triggers off a seizure.

As you can see from the video, it is not to extreme yet, so the Botox must still have some sort of hold over it, but not much. I cannot wait for Tuesday when I see my neurologist for more injections.

 

Troublesome Tremor & Consultant Conundrum

On Friday my jaw developed a painful tremor (see video on previous post) that has caused me more and more issues. Since Friday I have visited the out of hours doctors, been rushed by ambulance to hospital, and had an urgent visit to the dentist as the tremor is actually dislodging my teeth! It all is beginning to get a little bit too much and I desperately want the pain to go away. Knowing that the tremor is actually dislodging some of my teeth concerns me a lot. I still have a few baby teeth with no adult ones underneath them, so to know that this tremor is dislodging them is rather alarming. The Dentist I saw was an extremely lovely chap who reassured me that everything would be done to keep my baby teeth in for as long as possible.

As I have mentioned previously we have been emailing my consultant for several weeks now asking if he could book me in for Botox injections. Today I finally got a date, for three weeks time (July 16th). This is 5 weeks later than normal. Now this may not seem like a long time, but being in agony 24/7 and struggling to eat and drink makes the situation almost unbearable, I am currently only just about coping by taking Oramorph (morphine) and Diazepam. It is also extremely debilitating. I have pain triggered non epileptic seizures, not only does this often result in me ending up in hospital but it also puts major parts of my life on hold. I normally go to my local Riding for the Disabled stable on a thursday for a riding lesson, this is an activity that is extremely important to me and one that I thoroughly enjoy, however I am unable to ride when I am having so many seizures.

There was also no mention of my week admittance into the hospital that was meant to happen over two months ago in this email. I am now sadly looking into transferring to another consultant at another hospital as I feel completely neglected by my consultant. I feel like he dangles hope in front of me and then snatches it away without warning.

On a more cheery note I got my splint for my left leg yesterday! This makes things like getting in and out of the house so much easier and has so far been a joy to wear. It is amazing how much of a difference the little things in life can make!

Video

Dystonic Jaw Tremor

Earlier on today my jaw developed a sort of tremor. It is extremely painful and my teeth constantly caught against my tongue and gums. It is hard to explain exactly how this tremor goes so I have uploaded the above video.

After taking two diazepam we eventually got the tremor to stop for a short while, however as soon as I tried to use my mouth it set the tremor off again. I am hoping this new symptom will follow the same pattern as all my symptoms when they started. It starts off seeming like it is constant and then gradually calms down so it is still horrid but nowhere near as frequent.

I would be very interested to hear from anyone else who has experienced this type of tremor. So please get in contact with me if you have experienced this or something similar.

Stimulant Experiment Results

As many of you will know, around a month ago I attempted to cut all stimulants out of my diet to see if it would have any impact on my tremors. Over the last week I have slowly introduced stimulants in low quantity’s back into my diet to see if there would be a noticeable difference in my body.

The results from my little experiment were extremely interesting. Whilst cutting out the stimulants did not stop my tremors it reduced them greatly, I would say it almost halved the number of tremors I have in a day. When I reintroduced the stimulants back into my diet this week, the number of tremors I have been having shot back up! I was careful to only consume a small quantity of stimulants just in-case it caused an increase, I did not expect this small amount to have such a big impact!

It is interesting to know that stimulants do actually have a physical impact on my Dystonia. Now that I know just how much of an impact it has on my symptoms I am going to make sure that I avoid stimulants as much as possible.

I find knowing that it impacts me to be a comforting thought, as it means that by avoiding consuming stimulants as much as possible, then to a degree, I have control over the severity and frequency of my tremors. It gives me hope that there are natural ways to control and treat this condition along side medication.

I am going to do more research into foods that can impact Dystonia to see if I can find anything else that I may benefit from cutting out of my diet.

 

Learning Curves

Over the last few days I have gone from thinking from one point of view to another. The reason for this is that on Friday and Sunday night I fell. Both falls set of many hours worth of seizures and spasms. Sunday nights fall was the worst. No one was in the room with me when I fell, and I have little memory of the day itself so we can only guess what happened. However one thing I am sure of is that is I really hit my head when I fell. What I hit my head on we don’t know it could have been the piano, the computer, the box or my bed. I am lucky that I didn’t do myself  any real damage. However that fall in particular caused a lot pain, which consequently  meant that I spent the majority of Monday unable to feel my right leg as my brain had disconnected from it, which was not an enjoyable experience. On both Friday and Sunday night, I experienced moments where although I was conscious I was unable to communicate properly. I found that I could not form words or get my mouth to move. Sometimes I was lucky and I could wiggle a finger to tell my mum I was conscious. This really freaked me out and got me thinking. The following picture describes best how I have felt on and off over the last few days.

I want to live my life! I am 20 years old and spend most of the day fighting with my body, just to get to the other room to see my family. I leave my house once a week if I am lucky. I am beginning to feel slightly insane. I want to go back to last March, spend my days on placement and my nights clubbing. I want to be able to hop on a bus and go to the pub to see my friends. I don’t like not having control over my life and my body. I feel like I spend my days shut up hiding from anything and everything that might cause a seizure or a spasm. Yet even being shut up does not prevent them. I still end up in agony, struggling to control my body.

However this second image depicts the second line of thought that I have followed over that last few days. I continue to mourn for a life I no longer have, one that I may never retrieve but at the same time I might. I need to stop mourning for the life I knew and embrace the life I am currently leading. However that does not mean the I give up hope for my old life. I shall always hope that I will be able to return to some sort of normality. For the time being I have to focus on the here and now, accept what is and carry on with my life whilst fighting for control.

I need to learn how to balance having some sort of normality whilst also making sure that I do not push my body over the edge. Like everything in life it is simply a learning curve, one that with time I shall eventually master. I need to remind myself often that I have only been suffering for about 8 months, I am still at the beginning of a very long road. I need to have patience and trust that everything I go through will give me the strength to keep on battling everyday, and eventually beat Dystonia. So for now I shall take deep long breaths, stay calm, and keep fighting on.

One day I shall beat my little Dystonia alien once and for all.

 

Dealing with Dystonia in Day to Day Life

The last few days have been rather interesting and positive. We have upped my Gabapentin even more, so that I am now taking 900mg three times a day. The reason for upping was a) to try to counter-act the tremors that had started in my leg, arm and head, b) I was intrigued to see if an increase dose would help enable my attempts to get back the ability of walking I had before the unfortunate incident on New Years day. I find that when it comes to increasing my does of Gabapentin, it is necessary to do this in baby steps. I am lucky that the only side effects this particular medication causes me, is when we increase the does, and even then these effects only last 24-48 hours.I find that an increase in the does, no matter how small, turns me into an irrational weeping wreck! I feel extremely sorry for people who encounter me during this. I am not going to up it any more for a while, as I do not want to get to the highest dosage and then find that it is not giving me any more benefits than the original dosage had. I do think that whilst the increased dose has not stopped these tremors, it has decreased them significantly, which is a huge relief! I have also received a letter from Surgical Orthotic’s with a date to seem them! I am hoping they will make me a brace to help me deal with the Dystonia that is affecting my leg! I am really looking forward to this appointment!

As many of you know, I had my last lot of Botox treatment for Ormandibular Dystonia back in January (on the 15th I think). Previously Botox has worked amazingly well for me, which led me to be rather naïve and presume that this would always be the case, or if did start to be less effective it would be later down the line after a few years of treatment. However my last treatment course only lasted 8 weeks, and this course seems to be heading the same way. I think it has been around 5 weeks since the injections and yet my little Dystonia alien is already trying its best to play with my jaw. Yesterday morning, just eating my breakfast set my jaw off into a spasm that caused the jaw to physically deviated (I am hoping this was just a one-off). Within seconds I went into one of my Non Epileptic Seizures, and then a few moments later I had one of my ‘silent’ Non Epileptic Seizures.

I have made a little of note of this, so that I can talk to my Consultant Neurologist about how quickly the Botox is wearing off. I know from his letters that he injects a lot less than my maxiofacial Consultant did, so I am going to ask if an increase in dosage could be considered, or if he can suggest anything else that we can do.

Last night I attended my pain support/research group, which as usual was a bundle of laughs! I entered feeling very stressed due to the fact that I  had my emotional imbalance from the Gabapentin dosage increase going on and the cold had set a spasm and tremor off in my right arm/ hand and my head. However by the end of it I felt full of energy, was laughing hysterically and was so relaxed. I even lowered myself out of my wheelchair onto the floor and did all the stretching exercises and partner exercises with them. This support/research group really does do me the world of good!

A few weeks ago, I decided that I wanted to lose some weight, get fit and just generally try to keep myself healthy. A friend, who also has Dystonia, recommend finding myself a Personal Trainer, so I rung around all the gyms in my local area explaining what Dystonia was and that I also suffered from Non Epileptic Seizures. Many of them literally freaked when I started explaining it to them, which I can complete understand, however I eventually found someone who was prepared to take on my neurologically faulty body!

After meeting him on Monday we decided it would be best do sessions from my home, he then came round to assess my house and what I was able to do today. I must admit I was amazed at how well my body behaved!!! My arm had the odd moment, as did my eyes, but overall it was great. I was able to do so much more than I had originally expected to be possible.

Things are really looking up at the moment! I am adjusting to this ‘new life’ and learning new ways to approach things. I am slowly building confidence back up in myself, and don’t get out of bed everyday terrified of my body. Instead I get up with a can do attitude, accepting that my little Dystonia alien may make things difficult for me, but they are not impossible!!!

Lastly, a massive thank-you to everyone who voted for me in the WEGO Health awards. I was up for three awards, however I have not made it through to the finals, but there is always next year. It meant so much to me that so many of you nominated me!!!  So Thank-you!!!

 

Tag Cloud