ME

ME

Thursday, February 11, 2016

A glimmer of hope

The process of trying to get an urgent appointment proved harrowingly frustrating but, I suspect the age of miracles is not yet dead - we certainly need them!

Anyway, the seemingly impossible happened .....

Monday, February 08, 2016

Eyewitness - Timeline - Headchange

This post also appears on Mal's Murmurings :



Eyewitness – Timeline – Headchange

150116 –  15.50hrs Attended Boots Optician for a (routine) eye test, reassuringly thorough, and made to feel at ease by optometrist, optician and all staff.

190116 Told to stop taking amitriptyline, usually taken at night, and sertraline, usually taken AM, with immediate effect. This was to be replaced immediately with trazodone, to be taken at night. When reading, as the pack advised, the enclosed Patient Information Leaflet it advised that one should not take trazodone if they have taken amitiptyline in the preceding fortnight!

As doctors, at surgery, were not forthcoming with a response to my concern, I quit amitrip and sertr. cold turkey, without taking the disputed new medication!
More details of these events can be found on my blog posts of 19, 29 and 25 January.

250116 Went to collect new spectacles from opticians – whilst en route to the opticians a most disconcerting sudden onset of a problem with my left eye occurred, A large floater, in the form of a black ring pirouetted through a full 360 degrees, dancing about and intermittently shooting at supersonic speed to a position several feet beyond my right side. My arms felt impelled to reach out to grasp this illusory element.

A few tests were carried out by the staff at the opticians but eye health seemed pretty good. I duly tried out and collevted the new spectacles.


020216 – took first dose of trazodone @22.20hrs

050216 – 12.30hrs fwd. Dramatically sudden decrease of vision occurred in left eye, an intensifying blurry veil stopping just short of total blindness, and a deep throbbing pain behind and surrounding the eye socket. When my beloved arrived home about 14.40hrs she immediately saw the need to drive me to the opticians pronto.

Both the opticians and optometrist carried out further thorough tests and scans, noticing a marked deterioration in my vision compared to my prescription of 15 January. The scans didn't reveal any damage or tears but, they made an appointment for me at Harrogate District Hospital Eye Clinic for 12.00 noon the next day.

By 23.00 hours my vision had improved significantly.

060216 – 12.00hrs attended Eye Clinic. Further tests and scans were performed before I went in to see the clinic's Consultant. After further tests, whilst I attempted to describe the experience, she gave a diagnosis of 'ocular migraine',(although typical episodes tend to disperse much more quickly than was the case for me!)

I subsequently discovered that anitriptylene has (not infrequently) been prescribed as a preventative for ocular migraine!

Perhaps if I'd remained on amitriptyline the ocular migraine would have been postponed. Alternatively, these events may have occurred nuch sooner had I never been prescribed the drug (to assist with night pain alongside tramadol)!

080216 – A severe overwhlming headache, cheek ache, eye ache persisted for much of the day, accompanied by giddiness and nausea.


Every day since commencing with trazodone(on 2 February) I've emerged into the day with a throbbing headache and in a stateveering towards total collapse – accompanied by a grey pallor.


++++++++++++++

PS after posting this blog, a friend, with considerable medical experience, was chatting with me on Skype - he happened to mention that 'blurred vision' was a known side effect of trazadone! He was also well aware of contra-indication re amitiptyline / trazodone.

Monday, February 01, 2016

Of Beatification - Massacre of the Innocents - and the Beeb

OF BEATIFICATION, MASSACRE of the INNOCENTS, and the BEEB

It cannot have escaped the attention of even the most casual listener to BBC Radio 2, in the course of the last 24 hours, that a process of beatification is well under way for Pudsey’s primary accomplice. Of course the way has to be carefully prepared for subsequent canonisation of the noble knight.

Every news bulletin reader, continuity announcer and programme presenter was contractually obliged to “Go Tel(l) it on the Mountain” that Terry’s woes have gone.

Each pre-recorded programme, broadcast yesterday, was preceded by a pre-emptive apology that their presenter, and production team, lacked foreknowledge of Sir Terry’s passing before the shows’ due transmission date.

Meanwhile, the slaughter of innocents (some of which is ejaculatorily supported by our own dear government ministers) continues unabated around the globe whilst, at home, the Tories persecution of society’s most vulnerable old, young, poor, sick and/or disabled, alongside their dismantling of the NHS, continues apace, only to pass unacknowledged by the Beeb’s department of navel-gazing news and current affairs.


RIP Sir Terry. RIP the welfare state’s compassion and humanitarian concern. RIP decency at the heart of Government. 

Monday, January 25, 2016

General Practitioners may be Bad for one’s emotional Health

General Practitioners may be Bad for one’s emotional Health!

Seven days ago my Patient Information Leaflet saga began and, on this the seventh day, I received an early morning telephonic communication from the medical practice. Once again it was a receptionist making the call and she duly read out a (quite lengthy) statement from the prescribing doctor declaring his infallibility. It actually stated that he was well aware of side-effect and contra-indications but as he was prescribing a very low dose (100mg when the capsules are made in only 50 & 100mg); I would have considered 50mg to be very low dose in this instance.

My primary concern was the positive declaration that one should not take this medication if they’ve taken the specific medication I was on within the last two weeks. Of course being some sort of God the GP obviously didn’t feel it was worthwhile to deal with this specific.

Of course it was said that I could arrange an appointment with said doctor to discuss the issue but, what’s the point of consulting a GP who offhandedly (as witnessed by my wife who sat in on the appointment) ignores anything the patient says if it doesn’t suit his agenda? In any case it always takes ages to get an appointment. Although I had been quite prepared to start taking the new medication two weeks after having taken the last dose of the previously prescribed ones, this wasn’t presented as an option so I now have misgivings about taking it at all, which as the receptionist says “that’s the patient’s prerogative”.


I can only assume that patients are supposed to ignore Patient Information leaflets, as they may prove challenging to the GPs’ omniscience. 

Wednesday, January 20, 2016

MEDICATIONS Mess Up - Contra-indications

The two previous posts refer to this same topic! I suppose this is simply an update.

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MEDICATIONS: Current state of play. I've now stopped taking both amitriptyline and sertraline ('cold turkey' as followed GP's advice to return unused ones to pharmacy - that was before I'd read the leaflet with the Trazadone that he recommended I started that evening) but am not taking Trazodone.

My beloved OH visited my GP's surgery to point out the information warning me not to take the Trazadone; the receptionist took the details saying the duty doctor would contact me this afternoon. Mid-afternoon one of the practice receptionists called me to say that the duty doctor said it had to be dealt with by the GP I saw yesterday but he won't be there until next Monday. It seems obvious to me that contracted GPs are afraid to challenge even wrong decisions by a practice partner.

Tuesday, January 19, 2016

A Further Post Script to previous post

This post is a further postscript to 

FRUSTRATIONS of a Medical and Medicinal Kind


 as someone who has been taking amitriptyline at night for more than a couple of years it's a good job that I thoroughly read the Patient Information Leaflet! To replace amitriptyline and a low dose of sertraline my GP has prescribed a drug (which I'm supposed to start immediately) which explicitly states that one "should not take Trazodone if I've taken amitriptylene within the last two weeks".
It also states special care should be taken if "your age is above 65years, as you may be more prone to side effects" and "take special care if you suffer from conditions like abdominal pain, muscle weakness, mental confusion"
I am 71yrs 7months of age, and suffer intermittently with abdominal pains and muscle weakness as part of my general state of unwell-being (ME). Even mental confusion was present not long after I first succumbed to ME at the end of 2003.

FRUSTRATIONS of a Medical and Medicinal Kind

This post also appears on 'Mal's Murmurings' under the title 'CONSULTATION FRUSTRATION'

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It shouldn’t really be like this; anger and despair turn out to be the result of a visit to the GP. Having finally yielded to my beloved’s advice, I got around to arranging an appointment with my local doctors practice. My reluctance to make this appointment is the knowledge that they’re only equipped, or allowed the time, to deal with a specific singular ailment, not a complex multiplicity or whole people.

First annoyance came when he (being the doctor) stated that the medications I was on had a tendency to conflict / counteract each other to some degree. Considering the length of time I’ve been on this assortment of potentially self-conflicting cocktails, I begin to wonder why the practice had been oblivious to this over the course of the past couple of years.

When conflicting advice, between medics in the same practice, as to whether certain meds should be used pre-emptively or only when absolutely necessary, adds a further quandary for the patient as to the efficacy of using the practice at all.

Anyway, a couple of the prescribed medications are no longer to be used; they are replaced by a single different medication. Worrying for me is the following statement, on the Patient Information leaflet:

 take special care if you:

suffer from conditions like abdominal pain, muscle weakness, mental confusion.

[there are times – regularly for the first two, occasional for the latter - when I can tick all those boxes]

The doctor further suggested that I should use co-codamol instead of tramadol, even though I’d had to stop using co-codamol, because of the effect it was having on various abdominal organs, a few years back. Tramadol, thankfully, remains on my prescription.

Next came the little prep talk suggesting Graded Exercise Therapy would help, even performing the same limited exercise on ‘bad’ as well as ‘good’ days. Obviously he has no understanding of what a PwME’s (even moderately so) ‘bad’ day is like. I explained that even the visit to the opticians, a limited amount of exercise involved, was sufficient to cause payback, his response was that obviously was too much exertion!

Well, it seems that I’ll have to stick with my own pacing regimen which essentially curtails any exertion on bad days and, ensuring that I always have some spoons in reserve when I exercise on good days.

The preceding events, at least their physical & mental toll, necessitate a temporary postponement of my visit to hospital for further blood tests

I’m quite proud of myself for refraining from the use of expletives during this little rant; expletives remain in my personal domestic space for the time being

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Malcolm Evison doctor even told me that there's no connection between overload of pain stimuli and the corresponding nausea that I experience !!!

Sunday, January 17, 2016

GOOD TIMES - BAD TIMES - Strangely NORMAL TIMES

Wrists in strong supports, left hand clasped tightly in armpit by right upper arm, right hand grasping left shoulder, upper left arm clasped tightly to side, and I want to scream. The nagging aching pain and discomfort little eased by 100mg of tramadol swallowed a couple of hours ago.

Everything felt fine when I decided to move from reclining to upright posture, but then just switching on laptop and tapping a few keys was sufficient to bring back the heavily aching nausea-inducing pain in the upper arms; the sensation not too dissimilar to a state of total exhaustion when one is prohibited from rest or sleep.

When lying down a throbbing ache envelops my knees; bending knees to make a tent under my shrouding fleece temporarily alleviates the gnawing knee pain. Next it’s the toes that are the problem, a sudden burning sensation in lower digits all too swiftly feels as if my skin is being grated by the restraining pressure of what are usually quite normal socks. This latter item swiftly becomes an instrument of torture and, their removal does little to relieve the sting.

It’s beginning to feel like some sort of punishment as atonement for having two reasonably good days. On Friday I finally managed to visit the opticians, first time I’ve managed that since 2003, previous attempts having been thwarted by sensory overload and/or panic attacks. I t really felt like quite an achievement to have undergone a range of tests by both optometrist and optician. The optometrist was genuinely interested to learn a little about ME (and my denouncing of the wastebin CFS diagnoses) and really put me at ease.

Fired up by this amazing achievement, next day I decided to attend to one of my problem PC’s that I hadn’t touched since September. No amount of online research (and subsequent application) resolved the issues that had thwarted my efforts last year. There was nothing for it other than fresh installation of Win 7 and countless updates to be applied.

By mid to late evening I was quite shatteredly exhausted but, having go to bed sleep proved extremely elusive. Illusory sleep turned out to be the lesser nocturnal oppression. Wrists, elbows, lymph nodes, and lower digits screamed out for attention. Tubular bandages over elbows and much of the arms, elasticated metal spined wrist supports offered little in the way of pain and discomfort relief and, the burning flayed skin of the toes screamed out in accompaniment to my expletive laden vocalising. An application of moisturiser to feet and toes proffered temporary alleviation but, I’m not sure whether it was the emollient or the massaging effect of its application that provided this relief. This procedure was repeated several times during the course of the next couple of hours.


 By 11.19 this morning I reluctantly emerged from the duvet lair only marginally less exhausted than the previous late evening. What of today? You may well ask! The first paragraph describes some of my afternoon.

Tuesday, November 10, 2015

Patient's Progress

Emotional resilience remains with me, apart from minor daytime lapses and nocturnal responses to my own unique brand of peripheral neuropathy. These nocturnal skin flaying, burning, tingling, claustrophobic sensations seem to afflict my whole psychosomatic being with expletive laden outbursts and foot stomps around the bedroom whilst my beloved sleeps contentedly.

Perhaps I should explain that the symptoms afflicting my whole being are, superficially at least, only being felt on the upper parts of my toes. The claustrophobia represents these pitiful digits' need to escape the confines of any bed-linen and / or duvet! There just doesn’t seem to be any chance of finding a comfortable position for the lower limbs, in order to settle down to sleep. Sundry intermittent discomforts play havoc with the bodies need for rest yet, quite strangely, by the time my beloved is waking from her slumbers I’m able to relax sufficiently to enter the Land of Nod!

Sudden onset daytime bouts of exhaustion are currently in the ascendant, frequently accompanied by wrist, elbow and knee pains demanding application of sundry splints and supports, which seem to simultaneously ease the nausea inducing tenderness emanating from axillary lymph nodes. Painkillers are then required as, once again, I’ve failed to divine that a pre-emptive dose would have been in order!


Ma belle frequently feels frustrated, and even guilty, by her inability to alleviate the intense discomfort that I quite frequently experience; I know that my suffering would be far greater without the experience of love and care for each other through which I am truly blessed.