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

Posts tagged ‘inpatient’

Dystonia Awareness Week 2017

It’s currently the 2017 Dystonia Awareness Week in the United Kingdom. Usually I would have kicked off awareness week on time (yesterday) with a blog post, and as has become tradition, would have been sporting some lovely green streaks in my hair.  Instead I’m currently in the hospital due to a flare up of my Dystonia; at least the timing is appropriate and they’ve given me some sexy green slipper socks (so I’m squeezing the go green awareness campaign in).

Currently The Dystonia Society UK estimates that around 70,000 people are affected by the condition, making it the third most common movement disorder in the UK, however it’s thought that the affected number of people affected may be far higher due to a lack of knowledge within the profession affecting levels of correct diagnosis. Dystonia presents in a vast amount of varying ways across all age groups which adds to the complications when it comes to diagnosing patients.

Only a few decades ago it was thought that Dystonia was caused by psychogenic roots, thankfully through giant leaps forwards in research we now know that this isn’t the case; many people will never know what triggered their condition, whilst others now know that their Dystonia is caused by either a genetic mutation or brain trauma. Sadly despite the leaps in understanding of the condition many medical professionals still mistake this as psychogenic condition and therefore do not treat the patient appropriately. 

This is one of the reasons that awareness week is so vital,  without awareness and fund rasing events research into causes and treatment options comes to a halt. At this moment in time there is no known cure for Dystonia,  but treatment can have a significant impact in a sufferers quality of life. 

Though out awareness week I’m aiming to blog daily, however this may alter depending on how well I am.

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Ignorant Drs

When you’re chronically ill you rather quickly get a feeling for the attitudes/how well informed the Drs in charge of you are on your conditions. IF you’re lucky you get a wonderful open minded Dr who takes the time to listen to you, my neurologist is a perfect example of this and has always fought for me. However, and sadly it seems more frequently, you come across Drs who are either simply not up to date (with everything they have to know this is understandable), or they just seem to enjoy being ignorant on the matter.

In 2012 I was admitted with worsening Dystonia to a nearby hospital, during my inpatient stay I developed pain triggered non-epileptic seizures. They completely dismissed my Dystonia and told me that it and my seizures were completely psychogenic and that the only treatment I would benefit from would be psychotherapy and that the seizures could not cause me any harm. This diagnosis was based on the fact that in my early teens I’d been physically abused, it didn’t matter in their eyes that I had sought years of counselling, and had put that section of my life far behind me. Months later I met my wonderful neurologist who confirmed my original diagnosis of Dystonia and informed me that my seizures had absolutely nothing to do with my past, but were caused by my body’s inability to cope with the significant levels of pain that I experience.

I have over the last few years been told repeatedly that my seizures cannot cause me any harm. It’s always fun to point out to the Dr at this point that this isn’t true when it happens on the stairs, or from standing, or crossing a road…the list is endless. In recent months, my POTS & EDS consultant has queried whether my seizures are in fact related to my POTS and autonomic dysfunction, but again this falls on deaf ears amongst my current local Drs.

It’s coming up to 5 years since my first run in with this particular hospital and their attitudes have not changed in the slightest. Last night I was taken by ambulance to hospital after having a seizure, I collapsed from standing and gave my head a rather good whack on the loo as I fell. Normally I wouldn’t go to hospital straight away for this, but due to hitting my head and being pregnant the hospital advised me to call an ambulance. This turned out to be a good call as halfway there I had another seizure which negatively impacted my breathing.

I’ve spent a lot of time in and out of the hospital recently due to my faulty body, so have got to know the staff in the wards relevant to me quite well. This also means I now dread every single visit. When the Dr came this morning for the ward round I felt like holding a hand up and saying chill I’ll leave now. He leaves me doubting my own sanity each time. However, I held my tongue and heard him out, just in case he’d actually done some research over night; he had not. Instead he gave me the usual lecture and then threw in that after discussing my case with a consultant, that has never met me before, they were going to refer me for psychotherapy for my seizures.

I’m beyond angry. At the back of my notes, and I inform the staff of this every time I am admitted, there is a letter from my neurologist explaining my seizures, explaining that it’s not just in my head and as clear as day states I need IV muscle relaxants and painkillers during one, and that there is no psychological deeper issue that needs dealing with. However, it’s become apparent that turning to the back of my notes and reading this letter is a far too complicated process.

Having to go through the same frustrating and time wasting process every single time I visit this hospital is exhausting and frankly disheartening.  I know that I did need to go yesterday and get checked over, but coming up against the same walls over and over again leaves me feeling like I would be better off avoiding this hospital at all costs and I can at least self-treat at home to a degree. It’s sad that 5 years on from my first encounter at this hospital, the same issue has yet to be dealt with.a560572834e8e4ffb7ca4d1e3f2e4337

Dystonia and Pregnancy So Far

Each of my conditions have reacted differently to my pregnancy and some new complications with my body have also arisen. So I’ve decided to incorporate these experiences into my blog with each condition being addressed in its own post as they are all unique and confusing in their own way.

At four weeks, pregnant my neurologist told me I needed to come off all of my medication due to the risks they presented to the baby as he developed. At that time, I was having six weekly Botox injections to my eyes, jaw, neck, and left shoulder, and I was on a range of oral medications including Gabapentin, Tramadol, Cetirizine, Topiramate, Dantrolene and more. My dosage for each of these medications were not particularly low which meant coming off them was a bit a of worry, luckily only the Gabapentin caused withdrawal symptoms (something I knew to expect after having the dosage adjusted several times over the years). I’m not sure if you’ve experienced withdrawal from Gabapentin, so picture uncontrollable weepiness because a cloud looks so beautiful, paranoia to the point you’re convinced that the shadow of the tree you just walked past is going to murder you and hideous night sweats. It’s not a walk in the park by any means but thankfully these symptoms didn’t last too long.

My main concern was how I would cope without Botox and my muscle relaxant Dantrolene. Over the last four and a half years I have been reliant on my six weekly Botox to keep me resembling an almost functional person, and Dantrolene was the only muscle relaxant that I found effective and can stay awake on for more than 5 minutes at a time. After expressing my concerns to my neuro he reassured me that I may not find these 9 months as terrifying as I expected, as some women reported experiencing an improvement in their symptoms in pregnancy. I wanted to believe him badly, any improvement I would take in a heartbeat, but at the same time I found it extremely hard to believe that something as natural as pregnancy could offer me an improvement that medication was unable to provide. Now I bow down to the wonder that is pregnancy, I’m currently almost 6 months’ pregnant and unbelievably my Dystonia isn’t too bad.

For the first 12ish weeks I only had minor symptoms, which was a relief as my severe morning sickness (I was diagnosed with Hyperemesis Gravidarum) meant that I wasn’t by any means well enough to cope with any severe spasms. By week 14 however I was admitted to hospital after spending 24 hours with my jaw dislocated and in spasm, unable to eat or drink. In the end, I was in the hospital for a week whilst they attempted to figure out what to do with me; without fail several times a day a Dr would look at me and be shocked that my jaw was still dislocated. I think my let’s laugh through the pain attitude confused them further. Eventually, after my midwife got involved and advocated on my behalf (amazing woman!) my neuro agreed to administer botox to my jaw and restart me on a small dose of Gabapentin, which has allowed me to remain fairly normal with the exception of the odd spasm; but I’ll take the odd daily spasm over an agonising spasm that refuses completely to go away.

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Late November, day 5 in the hospital after being moved to maternity high dependency unit

Whilst my Dystonia is without a doubt very much present still, as it likes to remind me by leaving me functionally blind or distorting my jaw, I’m coping far better than I had ever imagined. I had truly expected to spend my pregnancy bed bound in hospital stuck on a feeding tube with irritable limbs, the fact that this hasn’t (touch wood) materialised feels like a miracle, especially as a feeding tube was at the start debated. If it could just stay like this for the remainder of the pregnancy I’ll thank my lucky stars.

Inpatient Program So Far…

I am currently an inpatient at The Royal National Orthopedic Hospital Stanmore on a rehabilitation and pain management program. I have just started my second week and so far it has been an interesting learning curve. The program has many components to it which all relate back to pacing. It would seem that after four years of my neurologist stressing to me the need to pace my life I may finally be learning – but don’t celebrate yet, it’a slow change but I’m getting there.

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Morning Physio Exercises 

I have been really impressed with the course so far, the staff are fantastic. My assigned physio is fantastic and happily allows me to laugh my way through our sessions. Hydrotherapy has been my favorite therapy so far. The water provides resistance whilst enabling ease of movement in a relatively pain free environment. We had a session on foiling flare ups today, it’s rather reassuring to know that when I am discharged at the end of next week that I shall leave with a plan that shall help give me the tools to cope with it.

Whilst I am overall thrilled with the program and have been impressed with the therapies provided I cannot help but be tickled with the kitchen. So far everyday I have explained that I am allergic to X, Y and Z, and everyday I have been served food that I’m anaphylatic to. Ironically the hospital won an award last week for their catering…

Mixed Appointments

I’ve had several appointments with different professionals recently with mixed results. At the moment I feel like I am at a stalemate with my physiotherapists with them determinedly ignoring my Neurologists instructions to see me weekly and me refusing to let them ignore his instructions without putting up a fight (in a calm but firm manner). When I last saw them they gave me exercises to do at home and said they would see me again in two weeks. However if they get their way this will be the last time they see me, as they feel that until I can weight bare there is nothing more they do to help me.

Now I have to bite my tongue every time they tell me this as it was they who told me that I must absolutely not weight bare! As you can imagine this has left me very confused. To add to the confusion, only the other month they informed me the ligaments in my foot were damaged and extremely lax due to my spasms hence why I am not allowed to weight bare, yet now weight baring is all they are focused on! Whenever I ask how my foot is to heal they tell me that is up to my Neurologists plan.  The worrying thing is other than more physiotherapy there is no plan of action, when I last saw my neurologist he explained he had limited resources so treatment was limited.

One of my physios big things have been that I need to get myself a new splint made, as they have now decided they are not going to refer me for a second skin one, though it has not been explained to me as to why. I saw my local Orthotics department on Friday, he was a very lovely man and I must admit that I was slightly amused to see he shared my frustration at my physiotherapists as apparently they should have written to him if they were going to make recommendations on splints. He informed me that in his entire career he had not seen such force in spasms and he did not think that splints would be of any use to me. He was concerned that if he made a splint that contained my foot all the way round then I could end up severely hurting myself when I spasm. I can see where his concern is coming from, and he is most likely right, however after much pleading from me he agreed to get his colleague who has dealt with my spasms before to take a look at me and make the splint. Even though I know this splint could result in injury, I am willing to try it. I am willing to try anything that may contain my Dystonia and make my life easier! It holds the possibility of enabling to me to walk if it works, I would happily risk injury for the chance to walk again. He couldn’t believe that my physiotherapists were not helping me more and that my Neurologist was not injecting my foot with Botox simply because I had been told not use it.

I feel like every professional I talk to at the moment contradicts one another! To me surely everyone should be saying right so the spasms have damaged your foot, let’s look at what we can do to prevent it from deteriorating any further than it already has and what we can do improve it. Surely that cannot be that hard to agree to try to do?!

On a brighter note I had a fantastic appointment with Rheumatology this week. I went to have my Hypermobility Syndrome assessed. It turns out I have Hypermobility pretty much throughout my whole body. He has agreed with my Neurologist that I need referred to an inpatient rehabilitation programme due to the pain and weakness in some sections of body. I found it very reassuring to hear him talking about the same inpatient programme despite not knowing it had already been talked about with me. In this regards everything seems to be going in the right direction.

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