ONE TOO MANY...

[little mo]

The next one could kill me.
I am desperate for some advice, help and kind words.
Last month I had a deeply embarrasing experience, I have to back track first in order to make sense of it but even as I get close to that dreadful day and now subsequent repeats I have no control over the tears and cringe with the thougths as well as wake screaming 3/4 times each night.

One week before the experience, it was suggested by my pain specialist to increase amytriptlyn by another 25mg.
He had performed all procedures available to him ...each had failed..he was handing me over to ICATS...pain specialists whom are theraputic and not diagnostic. I suspect the suggestion of an increase looked good as he was seen to be doing something before saying goodbye.
During the following week a request for amytriptlyn was put into the pharmacy and my various medications were ready for collection one day ahead of a pre assessment for a spine op with a top neuro surgeon.
That night I took the extra amytrip, plus all my other meds by mg requirements. I went to bed early as transport was arranged to pick me up for the two hour journey.
It takes me twice as long to do things these days so I was up at the crack of....My partner said many times before I left that I looked like a Zombie! thanks, it got better he said five mins before I was leaving I looked like I was sleep walking...as soon as I got into the comfortable front seat of the car I was asleep..a little later I felt these hands fiddling around my middle and woke with a tremendous fear...Thank goodness this huge african man spoke, I was about to scream to say the least of thoughts of how to knock him out...he explained it was the first time he noticed I was not wearing a seat belt...and then laughed loud saying how wonderful it was WHAT!! talking to a lady for forty five mins and not being answered back..was it interesting I asked...Yes maam he said and before he could finish the sentence I was asleep again. At the hospital he told me to stay in the car while he got a wheelchair...I really felt old, he wheeled me to the suite and sat me on a chair. Within mins I was asleep.
My name had been called several times before someon spotted me in the corner asleep bag dropped on the floor and my chickens favourite treat spawled everywhere, very expensive dried worms!! The previous day I had treated myself to a new image, I had gone for some fine thin strips of pink to just shine through my blond hair and I loved it ..quite a boost, what I wasn't told was that the heavy perspiring I did during the night had turned my fine lines into a big blob.A big red blob and worms on the floor with me snoring up against the wall,
I was considered drunk. and I couln't even remember the medication I took...I am posting this bit now as I think there is something wrong,. I have just seen a repeat of this oh and I don't drink alcohol....

[little mo]

it seems I can continue.
My assessment was cancelled and transport arranged home...I had a pre booked gp appt the day after and the first thing he said was you look drunk, I told him the story we went through several things couldn't come up with anything. I decided through a feeling that I might benefit by not taking the extra 25mg of amy.
It was then, there it was....I had my glasses on, I don't need them usually for drugs as they are kept in different boxes with big writing.
Amytriptlyn had been increased within the package so it wasn't a case of taking an extra one...because they were all 50mg and not 25 the amount had gone up from 50mg per night to 150mg each night also I was eating less as I never feel hungry. Of course at the end of the day the resposibility lay with me but I didn't think it would be done that way.
This was the begining of strange things the worst now is I fall asleep standing up, I had eight falls in four days and all were damaging, there is not a part of my body that is not hurting...I must be doomed as I have cancelled the next assessment appt for Thursday I cannot walk far. I went to a walk in x ray dept after being told I didn't need to go to bigger hosp or make an appt but the information was wrong and had to go to gp surgery which was arranged there and then.There was one slot available and it took five mins to get there.
He showed a moments loss of temper which upset me I was already feeling sorry for myself...he asked why did we have to go there to be refered back to where we passed....My partner said we need a form from him to approve the xray...not where alcohol is concerned I don't he shouted....then breathalise her he shouted back and so he did...get on the couch he ordered with no apology for a negative test...he moved my legs arms and everything else that would move into positions they have never been before.
He then apologisedfor being a bit short tempered...we said we understood and then the strangest thing he said was....I wouldn't keep throwing yourself about if I were you ..the clock is ticking in the wrong direction and it won't be long before you do some serious no turning back injury...as if I did this delibaratly.I promised my severly tired worried partner this would never happen again sounding as silly as the statement the gp made...so at ten pm last night he went to bed I waited ten mins for the washing machine to stop...it then started ...I felt myself go into a trance and before I could grab hold of anything I cracked back onto the quarry tiles I had heard a movement in my hip and a crack to my head..I couldn't move and Tony was fast asleep...my calling out faded and the last I remember was my border collie dragging a blanket from the golden retriecvers bed and laying as close to me as pos, Fred had to go the otherside as there was no room where Madi was.Tony almost fell over me at 4 am....I had no sleep but was warmer in bed with under electric blanket on......I am taking no more or less than before and my body weight has not changed so I am so scared....it has been everynight since last thursday, I am in so much pain but what's worse is I have been told that for weeks people in superstores have talked about me being drunk
I don't go out often and never alone, oh gosh I keep having flash backs from the time I fell asleep at the hospital and have no one to talk to this about really thanks for listenig though I am so grateful
with love LITTLE MO

[janetm2]

Little Mo,
How very disconcerting for you to have such events. It woukd seem rhe extra Amytriptyline has disrupted your system but maybe you need to get all the drugs sorted out with a doctor or pharmacist and explain what is going on to get advice on how to get back to a normal state. Please concentrate on looking forward to assess the situation and do not beat yourself up for missing the dosage, given what we are goinb through anything can happen and will whether we realize (you did which is good before worse happened) or not. I heard a similar thing happen where another person slept through a whole set of tests at the hospital, etc but I can not remember or find what the cause and solution was for ber. The best to you and lrt us know how things work out for you. Take Care
Janet

[nyt]

My heart just ached for you with what has been going on the last few days. As Janet recommended take all your pills to a pharmacist or get right back to your GP and see what is going on with your meds that is causing you to be such a Zombie. Keep us posted with how you are doing. Prayers and a big hug sent for you and your partner. Prayers are sent to your dr.'s to help you figure out this medication problem.

[helenlegs 11]

Hi little Mo,
I hope you are recovering, hopefully the correct dosage is working now that you have worked out what's what with it.
I did a similar thing with gabapentin so don't think you are the only one who has mis/not read the all important instructions. Instead of taking 3 gabapentin at intervals I took 3 together (totally NOT what it said on the packet, but I had misunderstood my GP) I walked into walls and broke SO much crockery! luckily I didn't venture out of the house or I would probably have been arrested or sectioned!!!
Don't feel bad though. I would think it is water off a ducks back to most hospital staff and you have a reason behind the sleepiness. If we were able to get help for this complaint without battling every step of the way I doubt this would have happened to you. It makes us too anxious to hopefully get something we hope will help, our normal demeanour and usual calm can disappear completely.
Actually I have just (Friday gone) sobbed and sobbed (eventually, in that quick childlike, horribly audible, sucking in, breathing thing, when speaking becomes impossible ) in front of a tribunal panel (a judge and a doctor) who would not believe that pudendal nerve entrapment and piriformis syndrome exist.
They actually said that for all they knew (the lovely) Dr Greenslade (and others) could be quacks!!!! I had given them his report, I didn't realise they needed his curriculum vitae !! unfortunately his first diagnostic report was from his private practice, which seems to be rather frowned upon. Of course! I should have waited MONTHS for the good old NHS to get round to it, sorry!
They also told me, while staring with a steely glare at me, that I could have procured all of my medical information from some dodgy internet contacts,(that's you, that is ) who would face A LONG PRISON SENTENCE, yes you heard right!!! A LONG PRISON SENTENCE. . . .if they found that I was making it all up.Of course that meant me too.
Stupidly I was on my own but they made it quite clear that they didn't believe a word I said. I had 'the Nantes Criteria' and other scholarly medical articles with me but they were more interested in what my GP thought.
So I think I have out done you on the embarrassment factor little mo .
I was in meltdown for a couple of days, but I am not even in the least bothered about my 'display' now. It's all down to other peoples ignorance.
One day the world will realise what it's all about and then it will treat us better.
OH and that's not all. I have been informed that my funding for referral has been denied so I am unable to get any further treatment from Dr G and the Bristol team, he was about to refer me for pudendal decompression. I am still in a state of denial .

[Susanjane]

Helen, this truly is OUTRAGEOUS! My heart goes out to you as I’m sure will be the case with the many others who have benefited from your kind and knowledgeable input. My immediate response is why haven’t THEY checked out Dr Greenslade’s and others’credentials – how difficult is that? Unless, and until they do, they have NO RIGHT to make such disparaging comments. Secondly, unless and until they have invested even half the amount of time and effort in researching and learning about this condition as you have (which clearly they haven’t), they are not entitled to even have an opinion, never mind the responsibility for making a decision which will have such a significant impact on your health and well-being. I am so sorry – please don’t give up.

[calluna]

First - little mo - as Helen says, don't take it to heart. Hospital staff have indeed seen it all before. One to put down to experience, and move on...... And don't listen to people who gossip! That's nasty, saying things like that to you. Deep breath - chin up!


Helen - this is horrible! How parochial, how insulting..... It all comes back to your awful GP. There must be a way around this. Does Dr Greenslade know about this yet? Maybe he might have some ideas as to what to do next.

Failing that, come and stay in my spare room and see my lovely GP as a temporary resident....!

[helenlegs 11]

You girls are great! Thanks! The thing is, although I did try and give it my best (honest!) , they talked across me, over me and accused me, and then I just crumbled. There is no such thing as patient empowerment, how dare we even consider taking control of our medical destiny,what a ridiculous idea, suggesting that we might have a clue. We just have to play dumb and put up with it! . . . . .Mmmm. . . .I don't think so!
Parochial is completely the word for it Calluna (well and a few more )
Don't worry, this will just make me research more and become more empowered. Thing is remembering it all, will have to write crib notes on my arm next time (tattoo's??)
I have an appointment with my GP on Monday morning to see if I can determine what is going on with the referral.I am going to challenge the pregabalin prescription too. Wish me luck.

[Lernica]

Helen,

I'm sorry to hear about your tribunal experience. What is it that you are appealing?

As I prepare my disability application I'm thinking that maybe I should send in my pain doctor's c.v. too, given your experience. The problem is that my doc is not a PN specialist, just a neurologist.

[JeanieC]

Lernica,

I think that your neurologist is the most qualified person that you could go to, given that there are no actual PN specialists in Canada. He seems to be who everyone in your Province with PN goes to so I would think his opinion would be well respected!

Helen, so sorry about your awful experience. How dare they say we are "dodgy" internet contacts. We are the people who know the most and many of us are medical professionals. Where do you go from here? You have a choice of 2 PN groups in your country and you applied to go to the one closest to your home. It is really awful that you can't get to see the expert you obviously need to see.

Hugs,
Jeanie