Dreaming...

A visit to the pain clinic today... this is what I told them....

I was asked what strategies I employ when I am feeling this way!

Um...I just get on with things like I always do...

Whatever!

Eight Weeks Medication Free

So it is 8 weeks tomorrow since I finished taking the neuropathic medication.  What a journey it has been, certainly not one I would want to repeat in a hurry, and it certainly has made me very wary of trying any type of medication again.

They withdrawal side effects have been pretty awful and I am hoping that slowly I will start to improve.  The nausea and strange taste have on a whole gone.  The mental side effects I am still trying to cope with, but I think they might be getting easier.  Although I say this with some trepidation.

However, although I am no longer getting the headaches/migraines (the main side effect of taking the meds) ...they must have been having SOME effect on the pain levels, as the pain  HAS INCREASED since coming off the medication.  Just driving a few miles today to collect my husband from dropping his car off for a MOT and service has left me in much pain, from the shoulder, underarm, right down the length of the whole arm to my little finger.  The pain is pretty awful and I would rate it about 7 - 8 out of 10 :-( on the pain scale, so not good at all.

My hopes of perhaps getting back my motivation, getting the house in order and then perhaps getting a little part time job have been completely dashed, as I am realising that this just isn't going to be possible the way the arm hurts.

I had been hoping to do a little 'cello practice today as that has been sadly neglected of late due to the way I have been feeling, but not sure I will be able to.  Sigh.

The Dangers of Coming off Medication

Last night I was talking to my husband about some of the things that have been on my mind lately, or which there have been many!

Who am I?  I asked.  I know I have asked this question before.

Am I the placid, couldn't care less, very laid back person who has no motivation to do anything?

OR

Am I the highly emotional, stressed, tearful, volatile person I am at the moment who can't cope with anything?

Neither was his reply.  You are somewhere in between....

Well I certainly hope so.  

There really should be some warning when people go on these medications...not just about the side effects you can get while on them....sure they list SOME of them but DENY others...  but also they should list the WITHDRAWAL side effects even when coming off the drugs slowly after a period of time!  There really should be some way these issues are reported and noted, but of course they aren't and won't be.

The only good thing I can say so far about coming off the medications is that the migraines WERE caused by the medication, as I suspected and actually knew!  Although the 'specialists' are of course doubtful Charlies.  Only my GP believed me.

This is the first day I feel I have been up to writing some kind of update as I have felt I have been going not quietly, but noisily mad this last week or so, especially the last few days!  Everything and I mean every little and not so little thing has been getting to me in a big way.  So many tears, anxiety, and well complete inability to cope. My bed has become a refuge.  Again today is the first day I haven't had to retreat to it...so far!

Amongst all this I also have had the anguish of my beloved Pickles, one of my most favourite piggies ever, dying on Tuesday.  Oh dear I thought my heart would break.  I also think that all the past grieving that I never really got through due to be 'mind numbed' by the medication came to a head as well.  I wanted someone to come and take the rest of my guinea pigs away so that I didn't ever have to deal with this again.  Two days on I feel a little bit better about things.  I made him a little cardboard coffin and buried him in my rose garden.

All our pets are old, so sadly I know this isn't going to be the last time...

I will miss this little piggy and all his characterfulness for a very long time!

So Who am I?

I really don't know at this point.

I still feel a huge loss about my clarinet playing, all the years I spent studying and learning how to overcome my performance nerves (to a point) and still don't know how to come to terms with this.

My husband didn't really understand this until I said to him...

'Imagine you couldn't play or write Chess programmes anymore...'  I think then he may have got it.

Even the 'cello has stood in the corner for the last week or so....

The weather is getting me down,  how I long for some warmer weather, blue skies...as I am sure we all do.  I am fed up with the continual cold, damp, grey and wet weather.

I long for the country and have very itchy feet and want to move, but where I am still not sure...

I have missed visiting my parents this year so very much, but know it was a good thing I didn't as the effects of coming off the medication were far worse than I thought.

Time will tell I guess...

Lidocaine Infusion

Today I had my second lidocaine infusion in the hope that it is more successful than the last one I had in January which didn't appear to help at all.  I have to travel into London to the Neurology & Neurosurgery Hospital in Queen Square.

It is used to reduce nerve excitability and is sometimes used as a treatment for some chronic pain conditions, in particular those caused by neuropathic pain.  The drug is given over a course of an hour through infusion into a vein.  They monitor your heart and blood pressure during the course of the treatment as like any medication it can have side effects such as fits, abnormal heart rhythms and low blood pressure.  Fortunately I haven't suffered from any of these problems during the infusion despite the fact that my blood pressure is normally very low anyway

This time I had a companion 'Henry' and of course my trusty Kindle.  I am currently reading The Elephant Whisperer by Lawrence Anthony and Graham Spence.  What a wonderful read so far!  I also have to have 'an escort' to take me home so my lovely husband came to.  He bought some work with him to do and was kept busy that way.  

I have been doing more research and googling on the web into Chiari Malformation and have found some interesting websites.  Although somewhat scary as well.  I am fairly certain that the pain I suffer from is as a result for the Thoracic Outlet Syndrome and subsequent decompression surgery I had, but forewarned is forearmed and after my Pain Specialist seeming rather concerned about when I was having follow up appointments and whether I was going to be monitored I thought I ought to investigate further.

The Ann Conway Trust home to the British Syringomyelia Chiari Society.
Conquer Chairi

Chiari Support UK a valuable forum of fellow sufferers.

and another online support group based in America but with Worldwide members

Chiari Malformation Support Group

I've also found a couple of blogs as well which I have subscribed to.

Pain Specialist Appointment

This is as much for my information and records as for anything else as I guess in a way this is my 'diary' as I don't really keep a paper form, nor a journal despite the intention at times.

I saw the Pain Specialist in London yesterday. The pain in my right side when it is bad has spread somewhat a goes up the side of my face to my ear as well as down the right side of my body to my ribs and of course including the arm.  I told him about this and the fact that the Lidocaine Infusion appeared not to have helped at all, and nor were the Duloxetine doing a lot, apart from giving me frequent headaches.  My GP had wanted me to ask him about increasing the dose.  I was quite impressed the first time I saw him and also when I had my first infusion as he really seemed to listen a lot.  He still listened to me but seemed more concerned at first about the Chiari this time and was asking when I was next seeing the Neurologist, did I have any follow up appointments etc... I feel now that every time I have a problem it is going to be put down to the Chiari Malformation instead of as a result of this *** Thoracic Outlet Syndrome Decompression Surgery I had over three years ago, from which I have had pain from ever since!  In the end he did agree it was the same problem and I wasn't getting any other symptoms from the CM...and has booked me in for another Lidocaine Infusion next Wednesday.  We are going to leave the Duloxetine as is at the moment so no other variables have changed to see if the Lidocaine helps this time.  I sure hope it does.  When the pain is just at the usual level I feel I can cope and then it flares up like it did at the end of last week and I know that something needs to be done.  

I still think about my music and how hard I worked to get my Honours Degree and Masters and how I only really got to fully use them for about a year after completion before I had the operation and now am unable to play and haven't done for some time now.  I miss it, and still think I should just try and forget about how I ever did play now.  I had had thoughts about joining the local choir to get my 'fix' of music, but am not sure I really have the confidence to try singing.  I'm not really convinced I will be able to, after all that is why I played a wind instrument after all!  How does one really give up something that they spent some many years doing?  I have played since I was 7 years old.  Perhaps a final break from hanging on by the thread would be good.  Forget that I ever was a musician and music teacher.

Anyway I am going to try going back on to my Raw Foods diet to see if that will help get rid of the headaches even though I am still on medication.  It is worth a try that is for sure.  

In the meantime I will get on with things and forget feeling sorry for myself.  Yesterday was just a bit of shock to me that is all as I wasn't expecting him to talk so much about the Chiari and the worry of getting Syringomyelia and it does feel as if I am walking round with a time bomb inside of me waiting to go off.