Fucking, Cunting, Bastard!

[hungryjoe]

I may have posted before that I have a condition, Glossopharyngeal Neuralgia. It can be indescribably painful, and often has depression going hand in hand with it. 90% of the time, it's caused by a blood vessel touching and compressing the Glossopharyngeal (9th cranial) nerve, and in those circumstances, it can be treated by inserting a Teflon sponge between the blood vessel and the nerve. This involves brain surgery and, while it's not a big deal as far as brain surgery goes, is by no means without problems and side effects, but is infinitely preferable to the absolutely crippling pain which the condition causes.

I found out today that my M.R.I. scan shows normal pathology and therefore I'm one of the 10% who can look forward to a lifetime of pain or drugs , or a combination of both, with attendant depression and the side effects of the drugs - I'm fucking gutted to be honest.

On the plus side, the drug (Lyrica) which I'm on just now has kept me pain free for most of this year (apart from when I had a throat infection) and so far the side effects are few and not a major problem(unlike Carbamazepine and others).

[BrigitDoon]

I know where you're at Joe. I had similar news at the beginning of May 2007. It's devastating. Two weeks later I tried to take my life. Three years later I'm still taking the drugs. I keep trying to drop the dose so I can think properly, but the pain's too much.

Drugs it is, then. If they're working then so much the better. If you can adjust and accept that life is compromised then maybe that depression will go away.

It is, as you say, a complete bastard, and you have my deepest sympathy.

[Dave]

I know someone who moved to Ayrshire on specific medication for a rare diagnosed problem and the AJB insisted that the options be started from scratch until eventually after much ado they were put back on the original medication.

Although it's not much, you should be thankful your doctor isn't going through the treatment options starting at phase one. You might have had 2-3 years of pish antidepressants and painkillers.

[Doorstop]

As a fellow sufferer of pain (crap knee and now shoulders too) - although probably not to the same degree as yourself Joe - as well as a long term (20 odd years) of a severe depressive illness, schizo-affective disorder to be precise, I know exactly the sort of torment you're going through mate.

The only possible glimmer of a silver lining I can offer you is that at least you have a diagnosis and are already on your particular 'gold standard' medication regime. It may not be ideal but it's the best currently available that works for your particular physiognomy.

That sounds like a cop out but take it from someone who went for years without proper accurate diagnosis, going through the spectrum of every bloody mood stabiliser and anti-depressant going before hitting on the present (past 5 years or so) cocktail which has me as good as it's going to get I reckon, that the road to adequate medication can be a bloody tortuous one.

Don't let the term of treatment get to you old son, just take it as read that 'that's that' and get on with taking each day as it comes.

If that all sounds very twee or blasé then I'm sorry for that was not my intention .. I'm just saying there is a life to be had on constant meds - I've had one since my early twenties - sometime not the best of lives, sometimes downright moribund .. but in the interim periods you just have to grab it and choke the fucking spit out of it.

Depression is a hideous beast mate and God knows I've had my fights with it .. some successful, some not so but I'm still here kicking out fiercely at life and having a laugh (for the most part) with reprobates like the Groover and yourself.

Chin up buddy and if you ever need a 'behind the scenes' chat about the black dog (or whatever), I'm only a PM away and there's always a pub that'll be happy to accept our money. Well, for the first ten pints or so - can't really vouch for anything after that.

All the best mate .. keep punchin'.

[Boxer6]

Apart from "the Dog", I'm unable to empathise properly. I do, however, sympathise. Inadequate (actually, pretty shite) really, but there all the same.

[Delmont St Xavier]

As a fellow sufferer of pain (crap knee and now shoulders too) - although probably not to the same degree as yourself Joe - as well as a long term (20 odd years) of a severe depressive illness, schizo-affective disorder to be precise, I know exactly the sort of torment you're going through mate.

The only possible glimmer of a silver lining I can offer you is that at least you have a diagnosis and are already on your particular 'gold standard' medication regime. It may not be ideal but it's the best currently available that works for your particular physiognomy.

That sounds like a cop out but take it from someone who went for years without proper accurate diagnosis, going through the spectrum of every bloody mood stabiliser and anti-depressant going before hitting on the present (past 5 years or so) cocktail which has me as good as it's going to get I reckon, that the road to adequate medication can be a bloody tortuous one.

Don't let the term of treatment get to you old son, just take it as read that 'that's that' and get on with taking each day as it comes.

If that all sounds very twee or blasé then I'm sorry for that was not my intention .. I'm just saying there is a life to be had on constant meds - I've had one since my early twenties - sometime not the best of lives, sometimes downright moribund .. but in the interim periods you just have to grab it and choke the fucking spit out of it.

Depression is a hideous beast mate and God knows I've had my fights with it .. some successful, some not so but I'm still here kicking out fiercely at life and having a laugh (for the most part) with reprobates like the Groover and yourself.

Chin up buddy and if you ever need a 'behind the scenes' chat about the black dog (or whatever), I'm only a PM away and there's always a pub that'll be happy to accept our money. Well, for the first ten pints or so - can't really vouch for anything after that.

All the best mate .. keep punchin'.

My candidate for post of the month! I didn't even know this 'disorder' existed until I read your post and went online to research the info. This post is unique, it is supportive - something that doesn't happen many times in forums. Well done Doorstep and sorry to you ALL for whatever ails you - we just have to keep going....

[Doorstop]

[sunnysider]

Joe, you've got my every sympathy.
And I can't say any more than echo Doorstop's wonderful post.
My problems are slight by comparison - I was Assistant Editor of a newspaper in England till a year ago. Got made redundant. Got a job as a sub editor on £15,000 less. Wife opted for divorce, took my 4-year-old daughter with her.
Just been made redundant again and a court told me on Monday I have to sell the house and give her 80% of the equity. No daughter, no job, no house. Got depression and the drugs don't work.
Funnily enough I have just been reading the train crash thread. Basket case, at the moment. But you bloody well bounce back. And you will. I got inspiration and comfort tonight from Brigit and Doorstop's posts. Wise words.
Like Doorstop I say to you - keep kicking. Keep kicking, mate. And I'll buy you a pint in the Atlantis one of these days. We might even get wur hole, if we are unlucky.

[Salka]

I cannot empathise, but I just wanna add that you have my support. Okay, I know none of you very well, but I wish all of you well and I'm proud that yous have come this far. I don't know the feeling but I've seen the effects of depression and I'm glad that yous made it here to post your experiences and may you take from life all the positives that you can.

[banjo]

the great thing about this site is when piss taking is required then we go about it big time but when we get down to the serious stuff and the reality of what life throws at you kicks in there are no better people anywhere than the folk on here.i am speaking through experience,hungryjoe take care mate.

[Dave]

Joe, you've got my every sympathy.
And I can't say any more than echo Doorstop's wonderful post.
My problems are slight by comparison - I was Assistant Editor of a newspaper in England till a year ago. Got made redundant. Got a job as a sub editor on £15,000 less. Wife opted for divorce, took my 4-year-old daughter with her.
Just been made redundant again and a court told me on Monday I have to sell the house and give her 80% of the equity. No daughter, no job, no house. Got depression and the drugs don't work.
Funnily enough I have just been reading the train crash thread. Basket case, at the moment. But you bloody well bounce back. And you will. I got inspiration and comfort tonight from Brigit and Doorstop's posts. Wise words.
Like Doorstop I say to you - keep kicking. Keep kicking, mate. And I'll buy you a pint in the Atlantis one of these days. We might even get wur hole, if we are unlucky.

Without sounding condescending it's probably more a case of anxiety, having been subject to a similar experience recently (job, redundancy, lost everything) I can sympathise. Antidepressants drugs will not work and you will probably just lie about sparked and getting nowhere.

Best thing to do is look to occupy yourself, no point in sitting about. Life can deal an equal amount of shit with it's good stuff, infact it's better at piling on the shit than the good stuff. Chin up. I was left with nothing short of the skin on my body, though I'm sure that may have been contested at some point.

[Bankie Boy]

Joe, Have you seen this article on the BBC website today. It describes almost exactly the condition you describe. Like you this guy was passed from hospital to hospital without getting any relief from pain. A friend saw a documentary on tv, remembered it, found it on the internet and passed it to his friend. After watching it he contacted the consultant direct (His details are in the article) and a couple of weeks later was in theater. Within minutes of coming round he was totally pain free. May be worth further investigation. I have included the link. Good luck.

John.
http://news.bbc.co.uk/1/hi/health/10341944.stm

[hungryjoe]

Joe, Have you seen this article on the BBC website today. It describes almost exactly the condition you describe. Like you this guy was passed from hospital to hospital without getting any relief from pain. A friend saw a documentary on tv, remembered it, found it on the internet and passed it to his friend. After watching it he contacted the consultant direct (His details are in the article) and a couple of weeks later was in theater. Within minutes of coming round he was totally pain free. May be worth further investigation. I have included the link. Good luck.

John.
http://news.bbc.co.uk/1/hi/health/10341944.stm

Thanks John. It's the same type of condition but a different (Glossopharyngeal) nerve. As the surgeon says, it's likely to be "the worst pain imaginable".


"Jillie Abbott, chairman of the Trigeminal Neuralgia Association, agreed: "Thankfully, the incidence of Trigeminal Neuralgia (TN) is rare but because of this the association struggles to get its message out to GPs, dentists and specialists, many of whom are shockingly ignorant about the condition and its treatments."

It's so true, and as far as I know, Glossopharyngeal neuralgia is much less common than Trigeminal Neuralgia.

I first got this in 2005. I was up all night with pain that, every time it hit, made my body contort. I was at the doctor's surgery, waiting for it to open, and when I was seen, the locum doctor examined me and said there was no obvious cause of any pain. Like so many people, when I described the pain, she hadn't a clue what I was talking about. Had she known of the condition, the words "excruciating, stabbing pain in my throat, should have told her what I had. I was given a presription for cocodamol which was useless. After a few weeks the attacks of pain reduced in occurence and eventually stopped. They started up again in August 2007, initially, one attack lasting several minutes and becoming more and more frequent. I went to the doctor (a new practice) and the doctor there wouldn't attempt a diagnosis and prescribed cocodamol which I told him was useless. I waited for months and months for an appointment at the E.N.T. dept at the local hospital, by this time I was getting an attack 2 or 3 minutes after the last one and some attacks were lasting up to half an hour. I was actually bouncing about my living room because I couldn't bear to be still - such was the pain - I often ended up bruised from banging off the walls and furniture. All this while, my little cunt of a doctor, wouldn't prescribe anything stronger or more appropriate.

Eventually, at my appointment at the E.N.T., I was told what I had (I'd already worked it out from stuff online friends had suggested) the consultant had to consult a book before she told me her diagnosis.
As soon as she diagnosed me, she should have referred me to a neurologist - she didn't know to do that and neither did my G.P. (a new one, cuntybollocks retired)It was only in December last year that I found out about this from someone on Facebook's Glossopharyngeal Neuralgia Group. It was only in January this year that my G.P., after I took an attack in her surgery (while on 1600mg of carbamazepine/day) that she realised the kind of pain I was getting. She immediately prescribed Lyrica, which up 'til now, has more or less done the trick, and while a lot of folk get horrific side effects from it, mine are few and not serious.

Pardon my rant, but the article is so right about medical people's ignorance of this type of condition. Also, I was in hospital last year , having suffered chest pains (wind ) - no one in A & E had heard of G. N. and know one in the cardiac unit had either - even though this condition can actually stop the heart.

Anyway, I'm one of the 10% of people who's condition is caused by degenerative nerve damage, as opposed to the vascular compression of the nerve that the guy in that article had.
There is no surgical treatment for me.

[hungryjoe]

I know where you're at Joe. I had similar news at the beginning of May 2007. It's devastating. Two weeks later I tried to take my life. Three years later I'm still taking the drugs. I keep trying to drop the dose so I can think properly, but the pain's too much.

Drugs it is, then. If they're working then so much the better. If you can adjust and accept that life is compromised then maybe that depression will go away.

It is, as you say, a complete bastard, and you have my deepest sympathy.

Thanks so much for your very honest post. It's appreciated,
Joe x

[sunnysider]

Dave,

Thank you for your kind and wise words. I know you're right.