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

Posts tagged ‘Gabapentin’

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.

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The Beast Rears It’s Head…

and I don’t mean Beauty and the Beast style. This Beast of mine, is not going to transform into my Disney fairytale prince charming. Sitting in the Drs office earlier this afternoon, the Dr uttered words I had hoped I would never hear again. Complex Regional Pain Syndrome. The newest diagnosis to my add to my growing list, but not new to me. I have battled and conquered this hideous beast before. It took months and months in hospital. I never thought I would have to deal with this condition again. Last time it was in my leg. Now it is in my shoulder.

Emotionally I am numb, exhausted I know from the little sleep I have got due to pain. Part of me wants to draw the curtains, grab a pillow and just cry. But what good would that do me? It wouldn’t fix me, it wouldn’t take the physical pain away. I made the mistake last time round of avoiding everything that inflicted more pain, such as trousers (I lived in shorts), I couldn’t bear bed sheets, etc, anything touching me was agony. By avoiding touch I made the condition worse. I’m forcing myself to lie down on my back, to wear clothes that hurt, to put my handbag on shoulder even if only for a moment. By doing these things repeatedly hopefully my brain will relearn, again, that all is well.

The Dr went through my meds and was a bit stumped, as medication that he would have put me on to try to treat the condition, such as Gabapentin, I  am already on the maximum dose of. We therefore agreed to trial Sertraline on the lowest dose. It may or may not work, but I’ll try anything right now.

In the meantime I’m going to close my eyes, and breath. Things could be worse after all. I defeated this beast once before, and I’ll defeat it once more.

 

 

 

 

The Wonders of Medication

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.

GABA and Dystonia

I often view The Dystonia Society’s website to check out the latest information on research, treatment and more. The other day I started reading an article on their website entitled The Basal Ganglia and Dystonia. It was an extremely intriguing article and for those of you who have not read it yet I suggest you do http://www.dystonia.org.uk/index.php/about-dystonia/dystonia-and-the-basal-ganglia .

The section that interested me most was on the role of GABA in Dystonia. At the moment the medical society think (but have yet to prove) that a shortage of an inhibitory neurotransmitter such as GABA could have an impact on Dystonia, as it seems that Dystonia is a failure due to inhibition. Many patients, myself included, who suffer from Dystonia are sometimes put on medications such as Gabapentin, Baclofen or Benzodiazepines. All of these medication increase the amount of GABA in the brain.

I was extremely interested to read this as I currently take both Gabapentin and Baclofen and have found both to have incredible effects on my spasms. The Gabapentin felt like a miracle drug when I was first put on it as has had a huge positive impact on my full body spasm and on my eyes! The Baclofen at the moment is having a fantastic effect on my neck spasms as well other spasms.

So I cannot help but wonder if I have found the answer I have been looking for to why I have Dystonia! I know that I will have to wait until the medical society have managed to prove if this theory is correct, but I cannot help but feel slightly excited. I am always trying to understand why I have Dystonia, and to have an answer would give me peace of mind. I may have a long wait ahead of me but I shall be keeping my fingers crossed.

Medication side effects

Normally I don’t really get any side effects to medication. With one of my medications, called Gabapentin, I find that for about 24 to 48 hours after upping the dosage I am a bit of hormonal wreck, but that soon calms down and I’m back to my normal self. So when I started taking Clonzepam I expected to have no side effects, or only minor ones.

Instead I have dealt with the joys of being fine one minute  and a paranoid, weeping, agitated wreck the next. The smallest thing can set me off, for example my step dad simply asked what I wanted for breakfast this morning and I broke down into tears, then this afternoon I found out that due to Fridays trip to the hospital I am not allowed to ride this week, cue more tears. Right at this moment in  time I am extremely agitated, if I was able to walk I would be out the front door, seeking a decent length stroll to calm down and get fresh air. Instead I am sitting telling myself over and over that it is just the medication making me feel like this and I will soon be fine…and then the paranoia hits again.

Due to how extreme these emotions are I spoke to me GP and expressed my concerns. He has suggested that I start taking Tramadol (a pain-killer/pain blocker) daily, so that my seizures will be triggered less which in turns means I wont have to take Clonzepam unless I really have to. This sounds like a good plan to me, so I shall try it out. I do not want to stop taking Clonzepam because I would like to see how beneficial it is, so I am just going to have to suck it up and learn to deal with the side effects.

Tomorrow is another day, which will hopefully be better and brighter,

Dealing with Dystonia in Day to Day Life

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!!!

 

A Step In The Right Direction.

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.

 

The Little Improvements

Every day I am noticing little improvements in myself. For example today I put my foot flat on the floor!! Normally this would have caused a spasm. I was absolutely thrilled that it didn’t spasm, it was yet another positive improvement. I am putting all my little improvements down to one of my medicines. I am currently on a variety of medicines but Gabapentin seems to be the only one that is making a huge difference. At the moment we are slowly upping my dosage, to see if it will help me any more than it already has.

I am clinging to the prospect that it could be a ‘miracle drug’ for me. That if I take enough I may eventually walk, have my sight all the time and be able to use my right hand again. My biggest hope is that it will be enough to enable me to return to my midwifery training. I would take anything right now if it would enable me to able to return to uni and start doing my training again.  With each improvement I make, I get more and more hopeful that I will return. I know that my chances of getting back on the course is slim, but I am still clinging to those chances. Hoping that if I push my body hard enough and stick with the meds, then just maybe I’ll get back to Midwifery.

I am however, bearing in mind that the chances of me making a full recovery is extremely slim, and slight improvements may be as good as it gets. If that is the case, then I shall still be happy as every little improvement is a big step forward.

 

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