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.
I had been worried about how my body was going to cope with college and the added stimulation. Thursday and Friday at college went perfectly with only minor hiccups, which led me into a false sense of security. In typical Benedict style I was shown reality yesterday. As I was feeling pretty good and only a bit tired – I should have seen this as a warning sign – I decided to go with some of my family to a friend’s house warming party. It started off fine, I was enjoying myself, and even indulged in a cheeky Gin and Tonic. However soon the tiredness really hit, again this should have set of the warning lights but I ignored it and carried on chatting.
My eyes spasms, the ones that cause me to go blind due to the eyeballs being pulled up and back, started. At first they were not too long, but they kept happening and started causing seizures. Leaving at this point was not an option as my brain had disconnected from my legs, leaving me functionally paralysed.
Then it all calmed down. I thought my little alien had gone back to sleep. It turned out to be the calm before the storm. I went blind again, and this time my eyes didn’t seem to be coming back, I tried sensory tricks which failed, I even started hoping I would have a seizure as that would normally bring them back yet I was staying unusually conscious. This began to make me nervous, I was in a new environment, surrounded by lots of people who I didn’t know (they were however all very lovely and helpful), and this spasm was becoming unusually long.
The longest this particular spasm has ever lasted is 15 hours, and after an hour of being blind I began to panic that the same thing was going to happen. When I get nervous I talk…a lot, which my poor mother had to put up with. After taking some Diazepam my legs came back however I still remained blind. In the end we decided that the best thing to do was to try to get me out the house and to the car whilst I was blind and then judge what to do when we got home. Getting out of the house however was the tricky part. I had to, using my crutches and splints, walk out and down two small steps, then up two steps and then transfer back to my wheelchair. Doing this whilst I am able to see is hard enough, so doing it blind was going to be difficult. With the help of my parents and some lovely people I got down the first two steps and up one, it was at this point – just one step away from my wheelchair that I had a seizure.
I am so thankful for all the people that were around me, caught me, and helped me. If they all had not caught me I would have without a doubt woken up in A&E hooked up to IV pain relief. Between them all they managed to get me into my wheelchair, and then waited around until the space between my seizures was long enough to transfer me into the car. Thankfully, once we managed to get me home and got some Oramorph into me, my seizures calmed down and my eyes started to stay in place!
After a chat with my mum, we have agreed I am not allowed to go out/do much at the weekends for the first half term of college, so that my brain can adapt to the added stimulation and learn to cope with it. This way I can stay safe and realistically it will eventually enable me to do more.
I have to learn to take baby steps before trying to run. I’ll remember this one day. On the positive side at least I could see for some of the house-warming and had a good time!
My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.
My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.
Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.
I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.
I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.
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!