Good luck mate. Ive had sleep issues before and pills are great for short term but not long term what ive been told is you should keep your bed/bedroom as uncluttered as possible and only use it for sleep or sex (no reading etc), you should try not to use computers tv etc half an hour before bed and if you can't sleep or wake up and can't get back to sleep within 15 mins or so you should get up and do something for half an hour or so. Also no lights in your bedroom not even charging LEDs (can't remember the study or numbers but even a charging led can impact sleep)
I had a nurse call me to give me an update and she seemed surprised I was still on such a high dosage of steroids.
She told me to cut my intake by 3/4 which I did yesterday, didn't need sleeping tablets last night and now feel a million times more normal.
Still don't quite feel 100%, but feeling a million times better than I have for the last few weeks, finally my head seems like it's starting to work again.
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Good to hear some positive news mate.
Had to take steroids years ago and I know what you mean. Worst drug out there. Really, really powerful and nasty !
I was on Prednisone for 25 years....!
Long term use has it's own problems.
Had the meeting at GSOH yesterday, no new news, still 50/50 tumour or AVM. only new thing for me was getting to see a picture of it. Before all I had been told was they must have caught it very early as it was small. Seeing a thing looking like a Brazil nut in your head isn't quite as reassuring.
Also eventually figured out what has been up with my head myself. For the last week I've realised the symptoms I've been experiencing were identical to the signs of a manic episode and my doctor today confirmed my suspicion (was shitting it going in, in case she sectioned me which is why I left it a week). I've been told to stop the steroids and I go back Friday for a reassessment as doc thinks I will go back to normal.
Tbh, it's been an interesting and unusual experience as the difference I have felt makes me realise I actually probably was previously suffering in a depressed state which would likely be due to Bi Polar. The baffling thing was feeling a lot more positive and happy since I've been out of hospital, whilst having no clarity of thought or focus which apparently is very normal for people in my current state. I'm when I get better fuck cars, they need to start getting me diagnosing people, as even my doctor was amazed (for the third time in a row) with the info I gave her and I hear the money is better.
Last edited by Over Carl; 3rd June 2015 at 09:46 PM.
Hope coming off the steroids helps mate, keep us updated.
Went in today and they said it is an AVM, so I consider myself very lucky.
However they still don't know what treatment options are suited so I need to go in for an angiogram which basically means they stick a tube in my groin and guide it to my brain then pump in dye so they can clearly see the blood flow. They said it has a one in 500 risk of causing a stroke by their pipe dislodging plaque in my arteries, but if I don't do anything there is about a 2% chance per year of suffering a bleed so I might as well go ahead with it.
Bald Bouncer (10th July 2015), BIG-TED (10th July 2015)
Sounds like the best of a bad lot.?
this was sent from tapatalk if it makes no sense...
Lots of my repairs and pictures of retro stuff on my twitter.
https://twitter.com/Big_ted1?t=s9zEZ...Z-npEyeKA&s=09
Over Carl (10th July 2015)
In one of those "how to spot a stroke" posters it had a surgeon saying that if they get to a stroke victim within a certain period of time (seemed quite long) they can repair 100% of the damage. I guess this is if naturally occurring/normal but I'm guessing already being on the operating table with a neurologist should help negate any stroke issues.
Anyway - all the best mate, sure it will work out.
Over Carl (10th July 2015)
I wouldn't trust them mate they the ones talking gibberish, everyone knows you get plaque on ya teeth ;-)
Really tho they prob do this operation a couple times a week/day even so think those odds are pessimistic.
Over Carl (10th July 2015)
i had angiogram on my hart early last year, same odds for that. its a bit strange as i was awake & watching it on a screen above me, was a bit of a bugger when the Doc went into the wrong part of my Hart and i made a strange noise as i gasped for air.
Doc Says Sorry wrong chamber,lol, was all good though.
when i had mine done, they do about 20/30 a day.
Last edited by WRATH OF BOD; 10th July 2015 at 09:41 PM.
Over Carl (10th July 2015)
After months of tests, waiting for more, tests, waiting to discuss the outcome, etc., finally I've been told definitely what is up.
They are 100% sure I have an AVM (malformed blood vessel) in my head, and the incident last year was the result of a bleed.
The good news is there is only one vessel feeding it and it is reasonably close to the surfaces.
The bad news is that the artery feeding it seems to be a much larger diameter than normal, and the specialists are of the opinion my AVM appears quite fragile and there is a high chance of another bleed.
Often these are treated by embolization (feeding glue in to gradually close it up), but they are worried if part of it is successfully glued, that could put too much strain on the remainder which could greatly increase the chance of another bleed.
Also the other non invasive option (gamma knife - radiation therapy) could be used, but can take up to 2-3 years to take effect and they worry that as my AVM appears fragile, 2-3 years is too long to take chances.
So they want to perform a craniotomy which means they will cut out part of my skull, then cut out the AVM. The good news is after recovery time (couple of months or so) I should be 100% ready to go back to normal. Bad news is it carries a much higher risk than the other two therapies.
Now it's up to me to decide whether I want to go ahead with it.
Wow. I would go for the invasive. Kind of all or nothing or would be for me. Good luck.
Over Carl (13th January 2016)
Woah, whatever you decide. Good luck.
Over Carl (13th January 2016)
All this when you originally just thought you were speaking shit! Wow!
Best of luck fella! Hope all goes well with what you decide.
Over Carl (13th January 2016)
Hope you have some good professional advice to help you make the decision, and whatever you decide best of luck and remember you have many friends here ready to support you where possible.
Over Carl (13th January 2016)
I just want to say don't base your decision on Googling or advice from DF! Get the opinions of as many doctors as you can and base your decision on what they tell you. I think "researching" on the Internet will just stress you out more and make the decision harder than it already is.
We're here for your moral support though brother. We're all getting fucked on here recently!
Terry
Over Carl (13th January 2016)
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