Elvis Costello, in case it's on the tip of your tongue!
My prolonged absence has been entirely down to the fact that I just can't get my head round the pain at the moment. My legs are extremely wobbly and not to be trusted under any circumstances, my arms are constantly shaking and I'm an emotional wreck, clingy and needy and bursting into tears at the slightest thing. For the past 48 hours I've been in pieces because I've lost a favourite skull keyring, for goodness sake. This isn't like me at all, but the magnitude of the pain and this infernal shaking seems to have tripped something in my mind. Fortunately my darling husband is wonderfully understanding. He gives constant reassurance with his calm and loving voice, gentle hugs and tender kisses. He has an almost psychic connection to me and what is happening within my mind while the withdrawal symptoms do their worst. I'm down to 125mg instead of the 200mg of the Topiramate now and the pain is COLOSSAL. Last night I, and therefore we, had the best night's sleep since the reduction plan began. Every other night I have slept hardly at all, and then only fitfully. I have never experienced pain like this apart from when I was coming off the Lamotrigine in order to give the Topiramate a try - and even so I think this might be worse. What things will be like as I get even lower doses fills me with dread.
Here goes.....
Tuesday, 21 August 2007
Tuesday, 14 August 2007
What Now?
Actually, the appointment went very well. The consultant was very attentive, more so than ever before, and very nice. He could see that I was in a great deal of pain; he knew that normally I put a brave face on things but that today I was different.
We agreed that the latest drugs experiment was not a success. And so I have to gently wean myself off this one, just as gently as I weaned myself on to it, and I will then be back at the "curled up in ball screaming" stage. "So what then?" I asked, not unreasonably I thought. The word 'evasive' springs to mind. "Let's detox for a bit". Eh? I'll still be taking 13 other drugs for goodness sake! I could increase the dosage of one of my existing drugs ( to a level which is, interestingly enough, off licence!!) or maybe "eventually" (WHAT?!!) add a new drug into the mix which will specifically target muscle cramps and spasms. Really? And this new wonder drug is usually only given to people suffering from MS......
No. Not that wonder drug. Obviously. Believe it or not, there already is something on the market that can help with the wretched spasms and cramps. Why haven't I been offered it before? Good question. I had to demonstrate that I knew what a spasm was (per-LEASE!) and once I had crossed that hurdle I was deemed worthy.
Sativex. Well, I asked. I shared the info I'd gleaned. I even asked about the possibility of a private prescription, the cheeky mare that I was! (I knew he did a spot of BUPA on the side). He explained that the local PCT wouldn't fund it. Not for any condition. He managed to squeeze one month's worth out of them and that was it, and unless he could guarantee a steady supply he wouldn't prescribe it. Fair enough. He wasn't even able to prescribe it privately either. But he said something very interesting to me as I left.
" I don't want you to give up hope on this."
Don't you worry, I won't, I thought. Not while there's breath in my body, I won't.
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Later on, my GP was also rather perplexed by the blood pressure pills situation. He's come up with an alternative but it's not a straightforward swap because there isn't one, so we've got to see how I get on with it. As for the above, he said "Well he must have given you some idea of what he wants you to take instead, he can't just leave you like that!!" I explained the rather vague nature of how it was left so he said "Right, I'll give you a shout when I get the formal letter from the hospital and then we'll meet up and devise a treatment strategy from there, OK?" Then he smiled very reassuringly and added "Don't worry, I'm sure we can sort something out."
Right at this moment I'm not so sure myself, but I was very grateful for that.
We agreed that the latest drugs experiment was not a success. And so I have to gently wean myself off this one, just as gently as I weaned myself on to it, and I will then be back at the "curled up in ball screaming" stage. "So what then?" I asked, not unreasonably I thought. The word 'evasive' springs to mind. "Let's detox for a bit". Eh? I'll still be taking 13 other drugs for goodness sake! I could increase the dosage of one of my existing drugs ( to a level which is, interestingly enough, off licence!!) or maybe "eventually" (WHAT?!!) add a new drug into the mix which will specifically target muscle cramps and spasms. Really? And this new wonder drug is usually only given to people suffering from MS......
No. Not that wonder drug. Obviously. Believe it or not, there already is something on the market that can help with the wretched spasms and cramps. Why haven't I been offered it before? Good question. I had to demonstrate that I knew what a spasm was (per-LEASE!) and once I had crossed that hurdle I was deemed worthy.
Sativex. Well, I asked. I shared the info I'd gleaned. I even asked about the possibility of a private prescription, the cheeky mare that I was! (I knew he did a spot of BUPA on the side). He explained that the local PCT wouldn't fund it. Not for any condition. He managed to squeeze one month's worth out of them and that was it, and unless he could guarantee a steady supply he wouldn't prescribe it. Fair enough. He wasn't even able to prescribe it privately either. But he said something very interesting to me as I left.
" I don't want you to give up hope on this."
Don't you worry, I won't, I thought. Not while there's breath in my body, I won't.
-----------------------------------------------------------------------------------------
Later on, my GP was also rather perplexed by the blood pressure pills situation. He's come up with an alternative but it's not a straightforward swap because there isn't one, so we've got to see how I get on with it. As for the above, he said "Well he must have given you some idea of what he wants you to take instead, he can't just leave you like that!!" I explained the rather vague nature of how it was left so he said "Right, I'll give you a shout when I get the formal letter from the hospital and then we'll meet up and devise a treatment strategy from there, OK?" Then he smiled very reassuringly and added "Don't worry, I'm sure we can sort something out."
Right at this moment I'm not so sure myself, but I was very grateful for that.
Monday, 13 August 2007
Tomorrow, Tomorrow.....
Tomorrow I'm off for my six-monthly visit to the Pain Consultant. He likes to be rid of me as soona s possible once he's decided on which drugs experiment he's going to inflict upon me because either the last one didn't work or the some of the drugs have stopped working but I'm hoping tomorrow will be a bit different. I want to be able to scrabble together what crumbs of my mind I can spare (I can't afford to spare a whole piece!) and give them to him. We have lost about six months of this year on the last drugs exchange, which hasn't worked and I'm now worse off than I was, although believe it or not I'm now mentally much sharper than I was under the old regime. What I need is a drug that flaming well works.
And to that end I have some updated information re Sativex. I've been in touch with the manufacturers. It turns out that my doctor could get in touch with them too. No need to to go through the Home Office now, that was overturned. The doctor would need to contact them directly, specify my condition and then they could advise him on how much Sativex he should prescribe me and it could then be arranged on a "named patient basis". Speaking in general terms, this puts a massive onus of responsibility on the GP - basically, he has to take personal responsibility for the patient using, and therefore potentially misusing, a controlled drug. Not only that, how in the name of sanity would the drug company know how bad the patient's pain is and thus how much of the drug to prescribe? Especially with RSD, when nobody knows very much about anything before you even start.
And another thing. I take several pills regarding high blood pressure (my blood pressure is now too low by the way, ha ha flipping ha). One of them also relates to my Raynaud's Syndrome - permanently freezing feet and hands, just the thing for RSD!! The manufacturers of this have decided in their infinite wisdom to cease packaging this drug in packs of 56 tablets. It will henceforth be in packs of 60. In the meantime they have ceased providing it altogether, leaving dispensaries and therefore patients in the lurch. There is no directly comparable drug, so I now have to take up a valuable GP appointment so that he can work out what to do for the best. As it turns out, I can discuss the results of hurling crumbs of my mind at the Pain Consultant earlier i the day while it's still fresh in my mind so it's no bad thing, but how ridiculous.... A rational person might conclude that it ought to be easy enough for the drug manufacturer to provide dispensaries with some blister strips of the drug in no packaets, leaving the chemist to use their own plain white packets to box them up, but I suppose that's far too sensible to be worthy of consideration.
And to that end I have some updated information re Sativex. I've been in touch with the manufacturers. It turns out that my doctor could get in touch with them too. No need to to go through the Home Office now, that was overturned. The doctor would need to contact them directly, specify my condition and then they could advise him on how much Sativex he should prescribe me and it could then be arranged on a "named patient basis". Speaking in general terms, this puts a massive onus of responsibility on the GP - basically, he has to take personal responsibility for the patient using, and therefore potentially misusing, a controlled drug. Not only that, how in the name of sanity would the drug company know how bad the patient's pain is and thus how much of the drug to prescribe? Especially with RSD, when nobody knows very much about anything before you even start.
And another thing. I take several pills regarding high blood pressure (my blood pressure is now too low by the way, ha ha flipping ha). One of them also relates to my Raynaud's Syndrome - permanently freezing feet and hands, just the thing for RSD!! The manufacturers of this have decided in their infinite wisdom to cease packaging this drug in packs of 56 tablets. It will henceforth be in packs of 60. In the meantime they have ceased providing it altogether, leaving dispensaries and therefore patients in the lurch. There is no directly comparable drug, so I now have to take up a valuable GP appointment so that he can work out what to do for the best. As it turns out, I can discuss the results of hurling crumbs of my mind at the Pain Consultant earlier i the day while it's still fresh in my mind so it's no bad thing, but how ridiculous.... A rational person might conclude that it ought to be easy enough for the drug manufacturer to provide dispensaries with some blister strips of the drug in no packaets, leaving the chemist to use their own plain white packets to box them up, but I suppose that's far too sensible to be worthy of consideration.
Tuesday, 7 August 2007
A Glimmer Of Hope Re Sativex
So it turns out it just might, MIGHT be possible to get Sativex, although possibly only privately and heaven only knows what that might cost and therefore whether or not I can afford it. And it would all depend on my GP or pain consultant being prepared to bend the rules ever so very slightly - if the system still allows for it, as the piece of information I've gleaned is dated December 2005. Basically, a special case would have to be made on my behalf to the Home Office, who would then (hopefully) allow an individual import licence to be granted to allow the drug to come in directly from Canada, where it is manufactured.
Hmmm.... it all sounds a bit dodgy, don't you think? And my new GP is very young and keen and doubtless hoping to be a GP for a good many years yet!! If only I'd known about this before my former GP retired - although whether or not he would have gone along with it is open to doubt in all honesty. He was a great believer in doing things by the book.
One thing's for sure. I don't think my consultant will be a lot of help. I've asked him to help me with something that's a little bit rule-bendy before regarding pain relief and his response was, to say the least, negative.
I'm not going to give up on this. People living with chronic pain deserve whatever pain relief is available and effective, regardless of what condition they suffer from. It shouldn't be dependent on how well known your afflicton is, nor on how badly a team of faceless individuals sitting in an office say you are suffering despite the fact they've never met you nor ever will.
Hmmm.... it all sounds a bit dodgy, don't you think? And my new GP is very young and keen and doubtless hoping to be a GP for a good many years yet!! If only I'd known about this before my former GP retired - although whether or not he would have gone along with it is open to doubt in all honesty. He was a great believer in doing things by the book.
One thing's for sure. I don't think my consultant will be a lot of help. I've asked him to help me with something that's a little bit rule-bendy before regarding pain relief and his response was, to say the least, negative.
I'm not going to give up on this. People living with chronic pain deserve whatever pain relief is available and effective, regardless of what condition they suffer from. It shouldn't be dependent on how well known your afflicton is, nor on how badly a team of faceless individuals sitting in an office say you are suffering despite the fact they've never met you nor ever will.
Monday, 6 August 2007
Life in the Slow Lane
Hi :)
Reflex Sympathetic Dystrophy is a cruel and little understood condition which is characterised by constant, relentless neuropathic pain manifesting itself in every conceivable way - and some you couldn't even begin to imagine as well. In my case, what started as a sprained left ankle has led to RSD spreading to encompass every joint in my body, while the muscle groups in my lower legs are affected by spasms and cramps many times per day. There is severe muscle wastage. The tendons and ligaments in the lower legs are also affected, as they are in the wrists and hands.
There is no cure for RSD. There is no truly effective treatment. High doses of anti-convulsants are taken to combat the worst of the pain and the spasms together with opioid painkillers and muscle relaxants in the form of anti-depressants, but really this isn't overly successful and the side-effects are, quite frankly, appalling. The numbing of the brain, the confusion, the memory loss - they're frightening enough. I shan't bore you with any more. I get about with two walking sticks on a good day, two arthritic crutches in a bad day, and for distances longer than 100m I have an invalid scooter.
There is a drug that might help. Cannabis, if it were legalised for medicinal use. But it isn't, and despite the wretched pain I'm not prepared to break the law. But joy of joys! A cannabis derivative pharmaceutical drug has been produced. It's called Sativex. It would, my consultant has admitted, in all probability help me. It would almost certainly relieve the dreaded spasms and cramps, if nothing else. So why, I hear you ask, am I not being prescribed this wonder drug? Well, it's those lovely people at NICE again. (Has there ever been an acronym less appropriate? Do tell.) Sativex hasn't been licensed for prescription in the UK yet. In Canada where it's manufactured, it's been approved for some time.
My Pain Consultant has also told me that he feels very certain that if/when Sativex is licensed for use in the UK it will only be available for sufferers of MS. That's it. For people with other, less well known conditions, forget it. Carry On Suffering.
Obviously I have got every sympathy with MS sufferers and it's quite right that they should have access to this drug. My point is simply that it shouldn't be uniquely them. There are others. People on the sidelines with "Cinderella" conditions that most haven't heard of. People struggling along, in pain, living life very much in the slow lane. People, if you will, like me.
Reflex Sympathetic Dystrophy is a cruel and little understood condition which is characterised by constant, relentless neuropathic pain manifesting itself in every conceivable way - and some you couldn't even begin to imagine as well. In my case, what started as a sprained left ankle has led to RSD spreading to encompass every joint in my body, while the muscle groups in my lower legs are affected by spasms and cramps many times per day. There is severe muscle wastage. The tendons and ligaments in the lower legs are also affected, as they are in the wrists and hands.
There is no cure for RSD. There is no truly effective treatment. High doses of anti-convulsants are taken to combat the worst of the pain and the spasms together with opioid painkillers and muscle relaxants in the form of anti-depressants, but really this isn't overly successful and the side-effects are, quite frankly, appalling. The numbing of the brain, the confusion, the memory loss - they're frightening enough. I shan't bore you with any more. I get about with two walking sticks on a good day, two arthritic crutches in a bad day, and for distances longer than 100m I have an invalid scooter.
There is a drug that might help. Cannabis, if it were legalised for medicinal use. But it isn't, and despite the wretched pain I'm not prepared to break the law. But joy of joys! A cannabis derivative pharmaceutical drug has been produced. It's called Sativex. It would, my consultant has admitted, in all probability help me. It would almost certainly relieve the dreaded spasms and cramps, if nothing else. So why, I hear you ask, am I not being prescribed this wonder drug? Well, it's those lovely people at NICE again. (Has there ever been an acronym less appropriate? Do tell.) Sativex hasn't been licensed for prescription in the UK yet. In Canada where it's manufactured, it's been approved for some time.
My Pain Consultant has also told me that he feels very certain that if/when Sativex is licensed for use in the UK it will only be available for sufferers of MS. That's it. For people with other, less well known conditions, forget it. Carry On Suffering.
Obviously I have got every sympathy with MS sufferers and it's quite right that they should have access to this drug. My point is simply that it shouldn't be uniquely them. There are others. People on the sidelines with "Cinderella" conditions that most haven't heard of. People struggling along, in pain, living life very much in the slow lane. People, if you will, like me.
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