Tag: medication.

Posted in Archive, March 2013

A flicker of faith restored for the NHS

Posted on by dystoniaandme

On Tuesday night I ended up going to A&E to be treated for dehydration. By the time I was seen I had been without water, medication and food for about 32 hours. I count myself extremely lucky that the triage nurse and Doctor who treated me actually knew about Dystonia – this is a first! It took awhile to get a cannulae in me as my veins had done a disappearing act. I was given IV fluids and IV medication. The medication they gave me was called procyclidine. I had never had this medication before and was stunned by how well it worked.

The doctor who was looking after me was very caring, and came and checked on me every five minutes. He instructed me to take the procyclidine for two days (today is my last day on it). I am extremely glad they administered it to me as it really does seem to have had a beneficial effect. I am going to discuss with my consultant, whether it was worth continuing this medication or not.

I am glad that I was treated by two very nice people on Tuesday, as it restored a bit of faith in me for the NHS. Every time I am dismissed by the medical profession  it ends up inspiring me to make a difference! Just because my illness is not well known does not mean I should be shoved to the side.

 

Posted in Archive, March 2013

Disgusting Medical Care

Posted on by dystoniaandme

I am seriously fed up with and disgusted by the treatment I receive from the medical profession! Even my GP, who is usually in my good books, has appalled me. Since 2:45pm yesterday afternoon my jaw has been clamped shut and deviated. I cannot eat, drink or even take my medication and have not done so since that time yesterday! We asked my GP to do a home visit, and after feeling my pulse and stomach he left. He claimed that he was sure my jaw would go back eventually and that he did not know what to suggest.

I know that eventually my jaw will go back. Eventually being the key word. We do not know how long it will take for my jaw to EVENTUALLY go back. I have not had a drink of water or taken any medication in almost 27 hours now. How long do they expect me to go without fluid or medication? Surly the logical thing to do is to admit me into hospital put an IV and administer me fluids, my meds and muscle relaxants/pain relief???

I do not understand why I should have to accept and put up with such disgusting treatment! I am disgusted and highly irritated!

Posted in Archive, March 2013

Two steps in the right Direction

Posted on by dystoniaandme

After a week of being in pain, I am feeling a lot better! On Friday one of the GPs at my Doctors surgery prescribed me a muscle relaxant to help with the spasms in my back, it has worked wonders! The spasm has gone, my body is no longer twisting and I can finally move around without being in pain! I am going to my see GP on Monday to discuss whether we keep this particular medication for emergency situations or if there a different muscle relaxant that he feels would be more beneficial.

Last night I gave myself a rather pleasant shock. I had gotten out of bed to do something, and I walked the two footsteps there!! My body did not react to it at all! You can imagine my joy, as I have not been able to do this since January 1st!!! Not wanting to push my luck I quickly hopped back into bed, trying to work out if I had done anything differently or if it was just pot luck. I am so happy, and I am hoping that my body will continue to progress like this.

It is such a relief for my body to finally be doing something ‘normal’ without over reacting. Now I know that I may not be able to do this again, it may have been complete fluke, but on the other hand it could just keep improving. All I can do is hope that this a good sign. Hopefully when I receive my leg/foot splint that the Surgical Orthotic department are making for me, this should help me progress with walking even more! I just have to accept each day as it comes, it’s all about taking baby steps, as there is no use trying to run before I can walk.

No matter how dark may life may seem, there is always a candle of hope flickering somewhere, you just have to look for it!

 

Posted in Archive, February

Dealing with Dystonia in Day to Day Life

Posted on by dystoniaandme

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!!!

 

Posted in Archive, February

Late Night Antics

Posted on by dystoniaandme

Yesterday my body was seemingly well-behaved. The only time it got irritated was when I went out for an hour or so, and my foot really did not want to be put in my shoe, and my eyes went blind a few times due to the lighting. However all in all, I found this to be an extremely positive and promising day.

As I was still feeling shattered after the busy week I had had, I decided it would be best to go to bed early. Meaning that when I went to bed, I would actually go to sleep and not pick up Harry Potter (I am rereading the series for what must be the 40th time) and read for hours. My little Dystonia alien, Benedict, however had other plans for me. I was just beginning to drift off to sleep when I felt the familiar tightening sensation in my leg and foot. I decided to ignore this and carried on trying to get to sleep. Benedict, unhappy that he had not managed to grab my attention, then decided to bend my foot as far back as it could possibly go. This roused me, however I tried to stay calm, and implemented my breathing exercises from my meditation CD. My leg then started doing two rather painful movements. It seemed to be trying to rotate so it was completely back to front, whilst going slightly upwards and pulling outwards, as if trying to go in the air whilst attempting to dislocate itself. This completely woke me up, with all hope of sleep gone,  I flipped myself over, so that I was lying on my stomach, to try to counteract the spasm by forcing it into the mattress.  I then started doing distraction techniques, such as making my good leg do movements, reciting lyrics in my head etc. In the end I switched on my Ipod, and just focused on my breathing. I did this to not only to keep me calm, but also to try and lull my body into a state of relaxation.

It was 3 am by the time the spasms relaxed, it only took 5 long hours, and I was finally allowed to drift off to sleep. Whilst this was an irritating experience, as I like and need my sleep, it was also a positive one. I manage to cope with it all without panicking. I kept calm, and did all the distraction techniques I knew, and tried each one for a fair amount of time, before allowing myself to give in and just let the spasm run its course.

Today has been a fairly good day. My Dystonia had not been that bad, so I am rather happy. I did not have my usual soup for dinner today as I am trying to up my protein intake, so I had mashed up fish fingers, mashed potato and beans instead. Whilst this was nice and extremely filling, it sadly set my jaw off. Recently when my jaw spasms, it has just been my lips going – thanks to the Botox treatment. However this evening my jaw also deviated to the left when it went into spasm. Thankfully the deviation was nowhere near as extreme as it has been before. I am hoping that this deviation is a fluke, as my last lot of Botox treatment was only administered about 5 weeks ago, so I still have 7 more weeks to go before I can have any more.

I am hoping for a quiet and relaxed day tomorrow. Which will be full of positivity!

 

Posted in Archive, January

A trip to the Doctors

Posted on by dystoniaandme

Cartoon DoctorI paid a visit to my doctor today, as my Dystonic leg is still really bad, and the extreme tremor has been going on for 11 days now. I was hoping he would be able to prescribe me some sort of muscle relaxant to try to take the edge of it. I also wanted to discuss with him about being referred to an Orthotic department, to talk about getting some sort of splint or brace for my leg, as I have talked to and read about people who have tried this and good results.

My doctor was not to sure what to do about the tremor in my right leg, and said that hopefully it was just one of those things that comes and then goes. I am really hoping that he is right as I find this extreme tremor very difficult to handle. It has really restricted how much I can do, for example in the day when I am on my own, I literally have to spend the day in bed, as I need people to help me hop around. I have decided that if by this time next week it is still bad then I shall go back to my Doctor and ask for him to prescribe me a muscle relaxant just so we can see if it works.

He seemed rather interested in my suggestion to try a brace or splint, and has said that he will write a letter to the surgical Orthotic team at my local hospital, and we will go from there. This was very positive, as I had expected him to say it would be best to discuss it with my consultant first and let my consultant handle it.

Overall it was a very positive appointment. Considering my Doctor knows extremely little about Dystonia, he really does try his best to help me the best he can. I hope that in the nicest way possible that I won’t have to see him next week. Just going to have keep my fingers crossed and hope that my right leg calms itself down.

Posted in Archive, January

A Step In The Right Direction.

Posted on by dystoniaandme

Today has been a slightly better day, in comparison to the last 5 or 6. The last couple of days I have been almost unable to even hobble around the house, without one or two members of my family holding my arms, and helping me. Today however was different! My right leg still shook like mad, and my knee still over extended, but I managed to hobble around unsupported. I only managed a short distance, however I am still overjoyed by this as it is a big improvement compared to the last few days.

I am thinking about asking my Occupational Therapist for a walking stick. At 20 years old, I did not expect that I would have to consider this, however if it helps that’s what counts.. My theory is that having a walking stick will either go one of two ways. The first being that it helps me with my balance, so hobbling around the house becomes slightly easier and less dangerous. The second is that with my natural ability to fall over everything and anything, the walking stick will become yet another obstacle for me to try to avoid, yet will still fall over. However I will never know unless I try, and it is not the end of the world if it does not help. Anything is worth a shot at this point.

Tomorrow my new wheelchair is arriving! It is a self propelled one, which will give me some much wanted independence!  I am really rather excited about its arrival and cannot wait to go out in it! It will put my mind at ease as well. When ever I have someone pushing me, I have a mental freak out, I know that they are not going to deliberately through me out of the wheelchair, however I still end up muttering under my breath “stay away from the curb…watch out for the hole” over and over.

My hand also seems a lot better today, I have my fingers crossed that it stays this way. It has improved so much that I did not wear my splint today. This is really positive as I don’t like strapping my hand up, but it helps contain the spasm so I can’t complain.

I have also started to slowly increase my dose of Gabapentin, I am currently taking 1800mg a day and am hoping to get it up to 3600mg a day. As I am finding it to be a very beneficial medication my consultant thought this would be a good idea. I am doing it in steps of 100mg in case I start getting any side effects, that way I know how much my body can handle.

Overall today has been a very positive day and I am hoping that the rest of the week continues to stay positive.

 

Posted in Archive, January

The Battle against my Foot, the Doctors and my Brain.

Posted on by dystoniaandme

When you wake up in the morning, what do you? Do you mentally wrestle with yourself to throw back your warm duvet cover, swing your legs out into the unwelcoming cold, stand up and start your day? This is a simple task. One you do every day without thinking about it.

For me, simple is not an applicable word for this every day task. Most days my mother wakes me up to give me my first cocktail of medications for the day. I stay in bed, at the moment for breakfast, as venturing outside of the safety of my mattress is a dangerous move to make. When I eventually have to get out of bed, it involves me calling for my mum to help. Once I have managed to get to the edge of the bed, my mum takes one arm and my step-dad or sibling will take the other.  They support me/attempt to prevent me from falling as I try to walk.

At the moment when my right foot is forced to try and work normally, it fights back hard. Often winning. My toes curl them-selves under, my foot flips over so that the top of it scraps painfully along the floor. And then to put the icing on the cake, it will twist in unnatural painful positions, as it protests violently against my will.

For me, at the present time, getting up and moving is an exhausting task. One that fills me with dread every time I need the loo, or have to move to a different room. Each time I attempt to move around, I try to clear my mind from panic. I tell myself over and over again, that this time  it might just be different, I might manage to walk a few steps, like I was doing before Christmas. I fill my head with positive thoughts. However when my foot then starts to contort, it is physically and emotionally draining.

I wish the doctors could see me like this. See me at home, when I am out of my wheelchair. Where a small glitch in my brain makes me vulnerable in my own environment. Where I struggle to walk one step, where my family catches me when I collapse, where my family protect me from my surroundings when the pain causes me to have a Seizure. Where they could see that I need help now and not in a years time!

However I must remain positive, I must focus on the fact that before Christmas, I was slowly making progress, and learning to walk again. The fact I started to walk, reassure’s me that I will again. Until then I just have to suck it up and deal with it. I must be pro-active. So I shall blog , I shall write letters, and I shall make the doctors and the politicians listen. I shall make them understand just how life changing and debilitating Dystonia is and I shall make them take action! I shall not remain silent!

Posted in Archive, January

Emergency Hospital Trip

Posted on by dystoniaandme

Yesterday  was an extremely odd day. To be honest I remember  nothing of it! Apparently as I was mixing up my medicine in the kitchen, I collapsed and fell on to our tiled floor and then went on to have a hell of a lot of Non Epileptic Seizures along with extreme Jaw spasms, with mere seconds of consciousness between each one. Due to the fact I really hit my head and arm hard when I collapsed, I was rushed off to hospital in an ambulance. Whilst at the hospital I was monitored for hours and had my hip x-rayed (thank-fully I had not broken it). It was while we were at the hospital that my mother noticed that I was also having Non Epileptic seizures which weren’t taking on their usual form. I was staring blankly, and not responding when my mum spoke to me or when she waved her hands in front of my face. This is slightly concerning as it means that I may be having more Non Epileptic Seizure than we are aware of.

Today I have woken up feeling like I have been run over repeatedly by a truck. I am therefore spending the day medicated to the max, and in bed. The thought of moving is not one I welcome. This incident has given me yet another issue to talk to my consultant about as it is getting beyond ridiculous now.On the bright side of things, whilst my Jaw Dystonia is still playing up, it is not to bad today, which is a relief.