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.
I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.
The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.
Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!
I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.
Today has been utterly heavenly! As we are going on holiday on Sunday I went shopping with my sister, mum and a family friend to get some last-minute summer clothes as I didn’t really have any. It was nice to out in such nice weather and for a change trying on clothes was great as I was able to go down a size in both tops and bottoms which really made my day.
I bought the basic tops, leggings and shoes I needed, and treated myself to a beautiful summer dress that I am in love with. It was a fantastic day out, and whilst it left me exhausted it also put in the holiday spirit. Going out always takes it out of me and after trying on so many clothes and being out for hours I was so tired that I fell asleep on the drive back home.
I normally see my reflexologist on a monday, however as we are going away on sunday I decided to see her today as well so that I will hopefully be able to stretch out the benefit I get from it over the majority of the holiday. It still amazes me just how well reflexology works for me. I get several nights of good sleep out of it which leaves me with more energy to tackle my Dystonia with during the day.
I am so excited to go away!
my fab holiday shoes.
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.
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.
Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.
I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!
I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.
Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.
Yesterday I had my first reflexology session with a lovely woman. She was able to come to my house and do it, which was perfect for me as it meant if my body reacted badly to it then I was in the best place, with easy access to the necessary medication. I was hoping that by having reflexology I would be more relaxed and would be able to sleep better.
It was a fantastic session, that left me feeling extremely relaxed. I was so happy that my body did not react to the reflexology, which enabled me to relax and actually enjoy it. During the session she concentrated on areas that related to pain, my liver and my kidneys. The reason for this is that the amount of medication I am taking will not be doing my kidneys and liver any good, so by concentrating on them it should help to detox them.
I did not do much for the rest of the day as I was extremely tired from the session. In the end I went to bed around 8pm because I was struggling to keep my eyes open. Normally I would have read a book before I go to sleep to help relax my body, but I did not even have the energy to read. Most nights I do not get to sleep till the early hours of the morning and even then I will carry on to wake up 4 or 5 times due to painful spasm. Last nights sleep was amazing! I slept for a total of 13 hours and did not wake up once! I was even full of energy today which was fantastic.
I am so happy that I was able to get a good nights sleep, it made a real difference to my energy levels today. As the reflexology session appears to have had such a fantastic effect on me, I am planning to book more and see if these improvements carry on. I am extremely hopeful that these sessions will continue to have a beneficial effect.
One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.
One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.
Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.
At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.
I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.
My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved. The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.
My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.
I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.
I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.
I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself and have more energy to fight Dystonia with!