So my neurologist has stated my pain is atypical. Does this mean it's not typical of trigeminal neuralgia?
I began with the excruciating shock like pains last easter. Within months it went bilateral. A year on and I sometimes have a dull ache on either side of the face that can last for days. This wasn't present before.
Of course the shock pains keep coming and with the onset of winter it has really flared up. I work outdoors which means I'm exposed to the cold breeze and temperature fluctuations that can play havoc with my days.
I don't get any pain in my sleep. That's a real blessing. I've done the whole range of nerve medication and have had reactions to each one. The reactions are diverse but basically I'm left with oxycontin/oxynorm as my only ally. I take other meds for other things but these interact with oxycodone to cause mild respiratory distress at times.
What a life. How the hell, at 45, can I even imagine what the future will be like. The neurologist has ruled out the operation as I have bilateral, the left side is explainable because the MRI revealed irritation of the nerve but the right side has no known cause.
Has anyone had any luck with a Total Permanent Disability claim? The thing is the meds make driving the long distances I need to with work very dangerous. I've nearly nodded off a dozen or times and find it hard to keep the van between the lines. And the pain I suffer at work really suggests to me that my working life is strictly limited.
I've ranted on enough now but would love some feedback.
Well Starweb your expirence is so close to mine its not funny.
I did have the MVD though but that was in 2006 when I was 36. I am now back to the same level of pain again.
I had bilateral at first but was diagnosed witha Tornwald cyst (this is very very rare and is asociated with spina bifida so not likely to be common)
I had the Tornwald cyst removed in 2010 after it grew from pea sized to the size of a walnut.
now my TN is strictly left side only.
Like you the cold is causing issues. (I know Brisbane cold?? I live out west and it was close to 1 deg often this week and the house is cold in the mornings )
Can you handle hot (really hot) air on your face?
Something to try as it works for me and I want to put it for a tip if I can find where.
I have dual zone climate control so i have one side of the car as coldas it can go and the drivers side as hot as it can go and then when I can I get the hot air on the left side of my face. For me its drig free relief.
This wont work if hot air is a trigger,
I use hair dryers the laptop when its cranking heat and the car heater to blow very hot air on my face and I get relief (please dont yell at me if you try this and it get worse though)
As to TPDC If you have a policy the first question is did you have a diagnosis when you took out the policy If you did, Did you inform the insurance company. They will not pay (or try not to) if this is they case.
You will need a specalist tpo give you the medical certificate. the issue is that you will probably be able to do an indoor job etc so it will not apply.
Best off reseaching. I have done recently as I prolapsed l5 s1 and needed information.
Hey there starweb... I've been fighting what I call Type 2 TN since I was 28 and Im turning 33 this year. My pain is constant burning pain in the left side. Ive been on this site maybe a year I think.
Your condition sounds like you started with typical TN (Type 1) and developed Atypical TN (type2) as well. I've seen over 10 neruo's in Oz in that time Id say, maybe more and the closest I've come to them admitting its ATN is one in sydney diagnosed me as trigeminal neuropathy. Sent me out the door though basically with a come back if anything changes. Im not willing to have an MVD because of the risks/costs and given a likely outcome of 5% with atypical. I had blood vessels on nerve in MRI... as you did, which if I had TN1 Id have the MVD.
Regards disability... Its a tough cookie to crack. No neuro Ive had will sign off on me getting disability but to be honest I have only asked 2. One neuro said he would help me out with support/disability but then when I went back into his office with the disability forms he denied saying it and wouldn't fill them out, which I found extremely strange and amusing. Why did he back flip ? He instead suggested I go to pain management at the hospital. Which I did last July. Anyways... I personally have to get Newstart, and meet with the disability officer once a fortnight. Which is ridiculous ! because she knows I cant work and wont be able to in the future so I go to her office and we talk about this and that. She says how sorry she is that the system is like this, and I say "dont worry about it, its not her fault". The issue for me though is that newstart is about $200/fortnight less than disability so Im missing out $100/week all because our condition isnt recognised. Ive had to jump through a lot of hoops to get here though. If you have any inroads with the system let me know, but Ive been in it for a long time now...
Thanks, Simon and Luke, it's a breath of 'non-triggering' fresh air just to share.
My policy was taken out before the condition so I assume I'm safe on that front. And the condition is triggered indoors as well. Chewing, the heating system (yes hot air is a trigger) and I had a pre-condition of ptsd which causes me to clench teeth a lot which as we know is a big trigger.
On a side note, my 6 foot 4, 150kg son rushed past me whilst I was sitting on the lounge watching the box the other night and the breeze he generated triggered a massive attack!
That's tough,Luke, I would have thought this condition would definitely qualify for DSP?
I'm on a waiting list for a pain management clinic so I figured I'd put any claim on hold until I'm firmly entrenched in there. My neuro has stated I need mental health doctor to help me deal with the associate mental anguish that walks in hand with this condition. Trouble is it's hard to find a decent counsellor anywhere these days.
I lived in Brisbane for 17 years, Simon, and I know how cold it gets out west. We were in Brisbane last August and it was actually colder up there then than it was down here in Melbourne!
Another thing is to get a mouth guard to stop teeth grinding at night.
I got one cast for my mouth and ware it every night and the clenched jaw issues are reduced greatly.
Im at samford and had the fire going well and truely this week. feeling the cold as Im in a queenslander (new) but it still gets cold.
I take endep 10's or 20's at night tricyclic anti depressants these help both with the lows and the TN.
I feel lucky that its only cold air that gets me then. Bloody painful when I step out of the bedroom in the morning though into a 5 deg house. Instant pain.
Re the insruance
I have a work policy and have kept a private policy just incase.
Fromwhat I understand you will need a specailist to sign off but the insurance company is not likely to go down without a fight when you do get sign off. They wll have their specailist
I have and am going through this crap due to a workplace injury and a prolapsed disk in my back. (floods 2011)
So I have my specalist and the WC specalist and the dirty tricks that came out really disheartend me.
Good luck with what ever you do anyway.
Thanks, Simon. I had my own battles with Qld workcover over the years, at one point in 1989 I had 3 young mouths to feed, had snapped my elbow in 2 places at works yet they left me without any income for more than 3 months as they tried to wriggle out of my weekly payments. I only recently received a final payment on that injury, a measly sum for permanent impairment.
Good luck with your claim, stick to your guns and do't let them intimidate you. Easier said than done, but they really do play on power differentials.
I think the reason it doesn’t qualify for disability is that you are able, in parts if the day AND there are treatments that help. In some cases cure them. I’m not exactly sure how it works, my GP doesn’t seem to think I qualify either. I took out health insurance with Medibank private last August because on the policy I got it will acknowledge Pre-existing conditions after 12 months, so that will help.
My ATN hasn’t got a cause and the drs have no idea where it came from. I was completing a masters at Melbourne when mine started so there is no insurance claim for me. I’m an enigma, the case no one can work out
If you've had any job which you pay super into you might have entitlements to the automatic 1 or 2 levels of cover for TPD. I insured myself with 4 levels of cover several years ago so even mine will only be a little over 200K but it would rid ourselves of the mortgage which would help.
I had electrical sparks but also the throbbing lower jaw pain. But its all over right side now. They say I have atypical TN. Think its a mixture of both. Hope all is well with you now.
Hi Chris, What you have sounds similar to mine. Have you got amalgam fillings? My doctor and dentist think it might be the deep amalgam filing I have on one side, ie, reacting to maybe the mercury. Had the filing out last week, pretty sick with swollen face and glands, but new women now, just the more typical TN. Having the last one out today. Looking forward to it. Good to try for some explanation.