Tag: botox

Posted in Archive, May 2015

Medication Minefield

Posted on by dystoniaandme

When diagnosed with Dystonia there is a minefield of medication surrounding you. One wrong move and your limbs are distorting and spasming at a rate that threatens to hospitalise you. A medication that works rather well for one person may have dire side effects on another. Keeping a diary of what medications you have tried and your reactions can come in handy.

Botox injections is a widely used treatment for Dystonia, and in many offers a degree of relief from their symptoms. In the majority of sufferers the injections are administered every 3 months. Personally for me, I find that the injections only last around 5 to 6 weeks so my neurologist administers my injections every 6 weeks.

Medication can be very hit and miss, so finding a dosage that works for you is important. For example, Diazepam is a commonly used muscle relaxant to treat Dystonia. For me if you give a very small dose as a one off I will be fine, in fact I will sleep fantastically well. However if you give me a second dose that same day, or the next day I will have a psychotic break. The last time this happened I seriously thought that if I had my leg amputated I would be cured of Dystonia. It makes no sense, but at that time I was convinced.

One of the issues I have discovered since becoming ill is persuading Drs to play around with medication. Often this can unsettle them, especially when treating a condition such as Dystonia that many have not come across before. Due to this I have found many Drs unwilling to change medication or try different combinations, it has often resulted in me battling before they agree to try. It is sad that this is the case. I have said it many times before and I will say it again, the more awareness there is the better treatment we Dystonia sufferers will receive.

On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .

Posted in Archive, May 2015

Support System

Posted on by dystoniaandme

Living with chronic illness is never easy. It impacts the majority, if not all, areas of your life. One of these areas is relationships. Whether this is friendships, family, or romantic relationships, chronic illnesses such as Dystonia can have a big impact. It is hard enough for the sufferer to understand what they are dealing with and cope with it, but for people who are not experiencing it themselves it really sums up their characters by how they react.

Personally I think it takes a lot of guts for a sufferer to open to their friends and family and admit that they have been diagnosed with Dystonia. It is not the easiest condition to explain. There is no rash or broken bone that they can see, no medicine that is going to cure you. You are sitting them down and admitting that you are not going to get better, that you may in fact get worse, but that you are hoping that a handful of medication and injections will help control the condition. People will either stand by you or they will turn their back on you.

I can remember when I first announced to those closest to me that I had finally been diagnosed. I was naïve enough to trust that my support system would stay intact. I never expected it to crumble around me. My relationship of two years broke down instantly, and many friends vanished into thin air. At the time I was lost, unable to comprehend how those I had thought would stand with me through thick and thin could just disappear the minute the going got tough. With time though I grow thankful that they did leave, it meant that I was left with a support system I could count on whenever I needed it.

When you live with Dystonia I think having a support system in place is one of the most vital things in enabling you to get by. Emotionally it means I know that I have friends I can count on to listen whenever I am having a bad day and am not sure how to cope anymore. Physically, I can be reassured that whenever I am functionally paralysed for example I know there are people I can rely on to help me. I know of some sufferers whose own family turned their back on them because they simply do not comprehend the condition well enough, I am blessed to have family and friends who are here for me 24/7.

Dystonia can be alienating, in life you do not often meet people with the condition. Surrounding yourself with people who love you despite having a brain that likes to be dysfunctional is important.

Posted in Archive, November 2014

Let’s Talk About Meds!

Posted on by dystoniaandme

I recently got approached by an American company asking me if I would be willing to blog about my medicine. I was very willing to do so and this is something I am very open about. Medicine is great, it can cure illnesses, take away pain and help us manage our conditions. Now obviously this depends on the type of illness and type of medication prescribed by your doctor. For me, some of my medicine will eventually cure me of Lyme Disease, other medicine helps me to manage my Dystonia and a handful of pills keeps my pain levels under control.

One of the key things about medication is drug interactions. Most Doctors will check before prescribing you a new medication that it does not interact with another, however some forgot to do this. I have experienced this once before when a muscle relaxant I was prescribed to help with extreme muscle spasms interacted badly with a pain-killer I was taking regularly. I was lucky that the reaction only caused me to sleep constantly. It could be quite humorous at some points when I would fall asleep in the middle of talking! I was like this for about two weeks as we had to slowly ween me off the medication. However joking aside medication interactions can be very serious and it is always important to check with your Dr first, or check the pamphlet that came with your meds.

When I was first put on my meds I naïvely figured it would ‘fix me’ or at least enable me to have a good quality of life. What I did not factor in at that time was medication side effects. I knew they existed I just never thought I would experience them. Clonzepam was the first medication I reacted to badly. I don’t remember much of what happened, but I turned completely psychotic. I was determined to find scissors so I cut all my hair off. Mum ended up having to stay home from work to look after to me as I was a danger to myself, I am thankful that I was bed bound. Diazepam was the second medication I reacted to. My local hospital had prescribed me it after my spasms severely damaged my leg earlier on this year. I was fine for the first day or so, then I turned psychotic again. This time I was convinced that amputating my spasming leg would cure me of all my illnesses. I was desperate to contact my neurologist to set up a date for the amputation and devastated that nobody could understand my logic! Months on from it and I am glad that nobody thought Hey, why don’t we give it a go!

At the moment for my Chronic Neurological Lyme Disease treatment I take a mixture of medication and supplements which works out as 47 pills a day and 1 injection twice a week. For my Dystonia I take 6 pills a day and have 6 Botox injections every 6 weeks. I take 2 tablets for migraines every day and 2 syringes of allergy medication every morning. It works out that I take 57 tablets/syringes a day, then throw in some injections every now and then, and that is not even factoring in days when I need pain medication and muscle relaxants. It is a lot to remember to take! However it is vital that I take these at the right time, such as if I decided to take my evening dose at the same time as my dinner time dose I would be feeling sick very quickly as they cannot be taken with food! As many of you know from my earlier posts one of my symptoms is brain fog so I rely on reminders in my phone to help me remember to take my medication.

Medication is an amazing thing but you need to know what you are taking and why. I am the type of person who likes to take as little medication as possible, however I recognize the fact the Lyme Disease made me seriously ill and if I want to get better I have to take them. I understand that I have to live with Dystonia for life so I will always be having a neurotoxin injected and I am ok with that.

Medications have a dire effect on the body if not taken safely. So please be sensible and talk to your Dr about meds!

Posted in Archive, August 2014

Positivity Promising Proactive Prospect

Posted on by dystoniaandme

Its been a few weeks since I blogged and it is hard to know where to start as so much has happened. I have had hospital appointment after hospital appointment, and I find that I am still trying to wrap my head round them all. I’ll keep todays blog brief and just mention a couple of appointments.Thankfully though my Dystonia has not been too bad as of late, my legs are tolerating my splints with more ease which is making life and physiotherapy much easier.

Last week I had an appointment at the Royal National Orthopaedic Hospital to see a specialist to do with my Joint Hypermobility syndrome, she has decided she wants me put on an outpatient program there building up towards being put into a 3 week intensive rehabilitation program. It was extremely a positive appointment that has left me feeling very optimistic. Joint Hypermobility Syndrome combined with Dystonia means my body can end up in some weird and wonderful positions, which can be rather painful, so I am hoping this program will give me some coping tools.

On Wednesday I attended a local private hospital that treats Lyme Disease to see if they would consider treating me. The Dr was rather lovely and very thorough in her examinations which left me feeling quite confident. They took blood to test for a number of things including Lyme Disease, and explained the treatment process if the results they needed came back. Having treatment through this hospital will be extremely expensive however you cannot put a price on health. Lyme disease has robbed me off so much of my life, and in many cases literally takes people lives, I don’t plan on being next. The NHS turning a blindeye on this condition will be one that in years to come they will look back on with regret.

This coming week is filled with more appointments. I am rather looking forward to seeing my neurologist, I am going to ask if he will botox my calf again and see if this helps with learning to walk!

Posted in Archive, March 2014

Ambulance Trip

Posted on by dystoniaandme

I’d like to start this post off by apologizing in advance if bits don’t quite make sense. I have a fair bit of medication in my system and I am having to concentrate very hard as I do not really feel like I am with it today. Over the last few days my body has been very interesting. I presumed it was just in meltdown mode after the trip to London and back for my Botox injections last Tuesday. My right leg in particular has been bad. The spasms have been impressive but rather painful. I have found myself repeatedly over the last few days in the position in the photo below. which I can assure you is not a comfortable one to be in.

Photo: So its not a particularly bad spasm. But why my leg felt the need to spend more time next to my head baffles me and was rather uncomfertable

Last night my body did full body twitches, which was a new symptom for me, however this did not seem to stop, then my leg joined in spasming repeatedly into the above position. However several times whilst in that position my hip spasmed in one direction and my lower leg spasmed in the opposite direction. This caused agony, and according to my family they all heard a cracking sound. I then started to have lots of my Non Epileptic Seizures. In between seizures when I was spasming we tried administering our crisis medication, Tramadol and diazepam, but this did not seem to touch the pain or the spasms, which meant that an Ambulance had to be phoned.

The paramedics, Gareth and Amanda, were two of the nicest people I have met. They helped keep me as comfortable as possible, which is saying something considering the amount of pain I was in. It was decided that I needed to go to hospital to have my leg checked out as it was swelling and they thought I had torn a ligament. In the end they gave me IV morphine which made me slightly sleepy and giggle, to helped ease the pain enough to transfer me into the ambulance safely, where they then gave me Gas and Air. I now understand why the women I looked after on the labour ward loved the stuff so much. At first it had me creasing up in laughter like a crazy woman, eventually I then thought I was dreaming the whole situation, which was when we decided I had maybe had enough of it. I have to say I was so impressed by the standard of care they gave me. They didn’t know anything about my condition, but they treated better than half the previous doctors I have seen!

The doctor Teeto and the nurse Precious in charge of my care, were again wonderful people. I feel extremely lucky to have been under the care. Teeto actually knew a fair bit about Dystonia and was not fazed by spasms at all. He quickly had me sent down to x-ray to make sure I had not broken my knee, where I had some more seizures on the poor woman as she to move my leg about. Thankfully I have not broken anything!! I have just damaged and pulled some of the bits in my leg. Teeto, sent me home with a box of Diazepam, his plan is for me to take this at regular intervals over the next few days, in the hope it will break this new spasm cycle.

Whilst I am in a lot pain now, and feeling rather spaced, I am so thankful that I was under the care of four such wonderful people last night. They were all so caring, and you could tell really wanted to help stop my pain and spasms. It is amazing the difference incredible people like these can make during times when you are in agony!

Posted in Archive, March 2014

Oromandibular Dystonia

Posted on by dystoniaandme

Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.

However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.

It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.

It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!

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

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.

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

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.