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Does anyone have suicides disease?

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Found 17th Feb 2014
I was diagnosed with trigeminal neuralgia aka suicides disease at the start of the year, and tonight has been another awful night, pretty much no chance of getting any sleep tonight, just wondering if anyone else had it? Do you have any advice for the pain and getting some sleep
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i haven't had it however i've just googled it. I feel for you. Hopefully the night will get easier as it goes on.
Be strong.
I really wish I could give you some advice, but all I can think of is to take paracetamol or painkillers; and you probably already know that - as you're probably more knowledgeable on relieving pain than I am.

I hope the pain subsides soon anyway coullgfx.
Original Poster
Cheers guys, currently taking tramadol for it, still not great, pain is **** but manageable, it's when it kicks in through the night, I just can't sleep

Bonus though, just streamed the walking dead, what an episode

Question now is try again to sleep for an hour or so b4 work, or stream true detective lol
My mum's just broke her ankle. And she's on tramadol. So this must be incredibly **** for you bud.
Original Poster
gmdlogan

My mum's just broke her ankle. And she's on tramadol. So this must be … My mum's just broke her ankle. And she's on tramadol. So this must be incredibly **** for you bud.



has its ups and downs in a sense, its been ok past 2 weeks, just small twinges of pain, but when its at its worst, its like a migraine, with toothache on every tooth in the right side of my face

I can just take my mind off it by starting arguments in the console threads lol :P
Ha!! Sounds awful bud. I've suffered from awful back pain since I was 15. Its why I had to stop playing football. Went for x-ray, blood tests, physio, chiropractor, osteopath, you name it, I had it. My parents spent a fortune. Just came on one day.

Used to get so bad I had to lay down at school as I couldn't stand up. If I keep going and moving about its manageable. But if I stop for an hour, sit down, it takes me bids to get straightened up.


I'll get to the bottom of it one day!
Ages* to get up.
I googled this as well as never heard of it and this must be terrible to deal with. I then read the dr Thomas haag story:
Dr Codd was resigned to a life dealing with the crippling condition until he went for an outpatient appointment with Dr Thomas Haag, a consultant in pain medicine and anaesthesia in Wrexham.

The consultant told him he could diagnose what was wrong and could perform a procedure there and then to stop the pain.

'Re-set nerves'

Dr Codd said Dr Haag put "very large cotton buds, along with anaesthetic" up his nose and treated the nerves in his face.

"In lay-man's terms, he re-set, or re-booted if you like, the nerve ganglion at the point where several nerves meet, almost like a electricity wiring junction box, so it sent out the right messages at the right time," said Dr Codd.

"It was incredible as the pain instantly disappeared."
You've probably seen this and similar story's but maybe this could be the way forward in the future.
I was just passing, I don't know anything that may benefit you and help you through out the problem, sorry but try and stay strong
I had neuralgia for about five years, it would start in my teeth on one side and reach up to my eye and cheekbone, I know why it is called suicides disease, I was on strong analgesics which helped a little.

Eventually after 5 years I started getting a small spot on my gum which would burst if touched went to dentists and it was a tooth abscess, had it drilled and drained and the neuralgia stopped!
coullgfx

Cheers guys, currently taking tramadol for it, still not great, pain is … Cheers guys, currently taking tramadol for it, still not great, pain is **** but manageable, it's when it kicks in through the night, I just can't sleep :(Bonus though, just streamed the walking dead, what an episodeQuestion now is try again to sleep for an hour or so b4 work, or stream true detective lol



I had a trapped nerve causing referred pain in my leg a few months back and was put on Tramadol. It was useless. I went to a sports physio out of desperation and he told me that Tramadol was a general pain killer and of little use for my condition - I needed something more geared towards neuropathic pain. My GP gave me low doses of Amitriptyline, which helped and gave me my first few hours of sleep in several weeks. Higher doses work as an anti-depressant, which I didn't need but the low doses affect nerves directly.
Chop some chili freeze it (scotch bonnet at least) take a piece out place little finger on it to thaw it a little then insert tip of little finger into left/or right nostril. Rinse little finger leave wet then rub gently inside nostril. Try not to snort in too much. Wash hands.

Edited by: "dontasciime" 17th Feb 2014
Just googled it, that sounds very nasty.

Theres a lot of info on this forum

patient.co.uk/for…877
ever tried acupuncture/chinese medicine?

might be worth a try.

ideally the nhs should fund alternative therapies but they don't - just make sure you consult a reputable practitioner.

i can vouch for the link below :

clinic.acumedic.com
I too have experience of this and certainly feel for you. Life at first was hell and I'm not exagerating. I'd try any painkillers or anti-depressants I could get my hands on and anything besides ! Tramadol and the rest .
Acupuncture helped me the most, my doctor did say that more GP's are open to this now so it might be worth a trying for a referral if you don't have any kind of insurance to help with costs.
I paid - it was soooooooo worth it . Good Luck, stay strong and rest whenever you can
i hope you start to feel better soon.
OP, where is the pain? My wife was diagnosed with Trigeminal Neuralgia and suffered for three years, not getting much sleep at night, but we resolved it in the end.
Tramadol is only a class down from Morphine, I've taken it in the past for a severe pain but I would not recommend using it long term, it takes a lot out of you.Tramadol is a full spread painkiller, so has a huge impact on your quality of life.

For trigeminal neuralgia (which is basically over active nerves) the better course of action is a mild dose of Amitrimpitline (also used for depression) and probably gebapentine. This combination massages the pain reasonably well.
Original Poster
tpol

Tramadol is only a class down from Morphine, I've taken it in the past … Tramadol is only a class down from Morphine, I've taken it in the past for a severe pain but I would not recommend using it long term, it takes a lot out of you.Tramadol is a full spread painkiller, so has a huge impact on your quality of life.For trigeminal neuralgia (which is basically over active nerves) the better course of action is a mild dose of Amitrimpitline (also used for depression) and probably gebapentine. This combination massages the pain reasonably well.



I had amitriptyline to take at nights, but have run out for now, I'm hoping to get another appointment soon, which will be my 2nd, so I'll see where it goes from there.
The pain is pretty much down the right side of my face, mainly upper teeth. Although sore and at times excruciating, it's more the constant uncomfortableness that's bothering me.

Thanks to everyone who's posted, I appreciate the advice.
My neighbour had it. Sounds bloody awful what he went through, he was close to having an operation on his brain to sort it out, but he found it was aspartame in processed food that caused it, now he avoids everything that's processed and his symptoms have pretty much gone, it was a pretty remarkable change. If you want to speak to him pm me and I'll send you his email, he'd be very glad to offer advice. Good luck!
coullgfx

Cheers guys, currently taking tramadol for it, still not great, pain is … Cheers guys, currently taking tramadol for it, still not great, pain is **** but manageable, it's when it kicks in through the night, I just can't sleep :(Bonus though, just streamed the walking dead, what an episodeQuestion now is try again to sleep for an hour or so b4 work, or stream true detective lol



I feel for you too. I take tramadol and you can take up to 8 in a day on the strength i,m on.Try asking your doctor about sleep as when i can't i'm allowed to take Zopiclone which are fine with Tramadol
Many a night in the last four years since a work accident i get up and go on here or read a book ,do something mind numbingly boring.or if it's early enough take a Zopiclone,

;)good luck see your doctor.
coullgfx

I had amitriptyline to take at nights, but have run out for now, I'm … I had amitriptyline to take at nights, but have run out for now, I'm hoping to get another appointment soon, which will be my 2nd, so I'll see where it goes from there.The pain is pretty much down the right side of my face, mainly upper teeth. Although sore and at times excruciating, it's more the constant uncomfortableness that's bothering me.Thanks to everyone who's posted, I appreciate the advice.



I'm currently sat with a herniated disk in my back, but after reading this, I feel bad for moaning! I'm on amitriptyline at nights and a mix of codeine, paracetamol and ibuprofen during the day. Personally, I'm not liking the amitriptyline as it makes me buzz for a few hours after taking it, then I can't wake up in the morning! Apparently it takes up to 6 weeks before you see any real results with it, so hang in there bud!

Also, what time are you taking yours?
Edited by: "jaybear88" 17th Feb 2014
Original Poster
jaybear88

I'm currently sat with a herniated disk in my back, but after reading … I'm currently sat with a herniated disk in my back, but after reading this, I feel bad for moaning! I'm on amitriptyline at nights and a mix of codeine, paracetamol and ibuprofen during the day. Personally, I'm not liking the amitriptyline as it makes me buzz for a few hours after taking it, then I can't wake up in the morning! Apparently it takes up to 6 weeks before you see any real results with it, so hang in there bud! Also, what time are you taking yours?



I've run out of them for now, but is was taking them about an hour before bed, not too sure if they were effective or not, some nights I'd sleep, others I wouldn't. More or less the same without them
coullgfx

I had amitriptyline to take at nights, but have run out for now, I'm … I had amitriptyline to take at nights, but have run out for now, I'm hoping to get another appointment soon, which will be my 2nd, so I'll see where it goes from there.The pain is pretty much down the right side of my face, mainly upper teeth. Although sore and at times excruciating, it's more the constant uncomfortableness that's bothering me.Thanks to everyone who's posted, I appreciate the advice.



This is the EXACT pain my wife had. After three years, a Dental Consultant suggested that she might not have trigminal nuarelga and recommended that she wears a DENTAL BITE RISER. This is basically a silicone mould that is custom built for your teeth. You wear it every night when you go to sleep. If you have the same symptoms as my wife, then it was NOT trigeminal nuarelga at all but that she has 'grinding' her teeth at night. This was aggravating her nerves around her right side of her face. There was no sign of her grinding her teeth, as I could never see or hear her; apparently this is common. Imagine that you are biting down on something hard and holding the bite; apparently a lot of us to do this in our sleep.

The bite riser stops you grinding your teeth at night and the pain stops quite quickly, within a few days. My wife has been wearing her bite riser for over ten years now and the pain has never returned. However, if she forgets to wear it one night, she can feel the pain returning. For three years she was in debilitating pain for no reason. It was heartbreaking to watch.

The bite riser has to be requisitioned by a Dentistry Consultant in the first instance. However, you can get your regular dentist to order new ones thereafter.

Good luck. Hope everything works out for you.
Edited by: "tpol" 17th Feb 2014
coullgfx

I've run out of them for now, but is was taking them about an hour before … I've run out of them for now, but is was taking them about an hour before bed, not too sure if they were effective or not, some nights I'd sleep, others I wouldn't. More or less the same without them



I thought that too, but the doc up'd the dosage, and got me to start taking them around 7pm. I don't notice any real effects, but when they do kick in (about 3-5 hours for me) they hit fairly hard. My physio warned me that it can take a few weeks before they start to show some day-to-day effects though so don't dismiss them straight away. If you ring up the GP, you should be able to get another prescription for them without having to see the GP (hopefully).
Avatar
deleted265520
Was on Tramadol after having my ACL in my knee reconstructed and the cartilage on both sides sewn back together. It took the pain away for a bit and sometimes made me hallucinate lol.

Fell over recently and think I tore it. If I have surgery again then it's more tramadol for me. Not fun

Best wishes OP
I have TN and take Amitriptyline and Pregabalin for the pain. I don't have any other advice to offer other than suggesting you go back to your GP, he/she is likely to increase the Amitriptyline, if you didn't think the dosage you were on was that effective. What dosage were you taking? I was offered Carbamazepine, but as I was already taking Amitriptyline and Pregabalin for other nerve pain, I chose to increase the dosage and this worked for me. It's just trial and error I'm afraid...I was taking Gabaptentin before the Pregabalin and it worked brilliantly for me, the downside was I suffered memory loss!

If you find it difficult to wake up on a morning after taking Amitriptyline, just take a few hours earlier. I take mine at 8pm and get up at 6am.

Hope you find something that helps.
Original Poster
PinkSherbert

I have TN and take Amitriptyline and Pregabalin for the pain. I don't … I have TN and take Amitriptyline and Pregabalin for the pain. I don't have any other advice to offer other than suggesting you go back to your GP, he/she is likely to increase the Amitriptyline, if you didn't think the dosage you were on was that effective. What dosage were you taking? I was offered Carbamazepine, but as I was already taking Amitriptyline and Pregabalin for other nerve pain, I chose to increase the dosage and this worked for me. It's just trial and error I'm afraid...I was taking Gabaptentin before the Pregabalin and it worked brilliantly for me, the downside was I suffered memory loss!If you find it difficult to wake up on a morning after taking Amitriptyline, just take a few hours earlier. I take mine at 8pm and get up at 6am.Hope you find something that helps.



I was to take 1 a night for a few nights, then up to 2 then 3 if I didn't notice results, but then I ran out, I will definitely have to go back to see GP, after not having any bother for a few weeks now, I thought it had gone away, so I didn't chase up any new prescriptions, but just like that it has come back.
It sounds like the Amitriptyline was working for you then, as the pain can take a few weeks/months to return after stopping taking it. I'd try ringing your GP and see if they can give you a prescription without seeing them...when it takes a couple of weeks for the meds to take effect, you'd be better getting them now than hanging on.
Sounds terrible. I suffer from hyper mobility syndrome. Which also kicks in a lot during the night after a day long day of being active. I've been prescribed both tramadol and amitriptyline and I must say the tramadol didn't do anything for me pain wise. Amitriptyline worked a bit better. However whenever I take them I get a horrible tingling in the bottom of my feet. Hope they work for you. As they're is nothing worse than sleep deprivation when you're already feeling **** for starters.
The agonising toothache that's got nothing to do with your teeth, but Alison only found that out after months of gruelling - but needless - root canal treatment

Alison Glenn, 53, from Cambridgeshire, had severe pain in her jaw

It took 2½ years and four needless root canals before she was diagnosed

Painful, debilitating trigeminal neuralgia is often slow to be picked up

Many describe pain as like an electric shock, even knife stabbing into jaw...

dailymail.co.uk/hea…tml
Edited by: "seb" 22nd Mar 2014
Original Poster
seb

The agonising toothache that's got nothing to do with your teeth, but … The agonising toothache that's got nothing to do with your teeth, but Alison only found that out after months of gruelling - but needless - root canal treatmentAlison Glenn, 53, from Cambridgeshire, had severe pain in her jaw It took 2½ years and four needless root canals before she was diagnosedPainful, debilitating trigeminal neuralgia is often slow to be picked upMany describe pain as like an electric shock, even knife stabbing into jaw...http://www.dailymail.co.uk/health/article-2577935/The-agonising-toothache-thats-got-teeth-Alison-months-gruelling-needless-root-canal-treatment.html



Thanks for the link, it was in interesting read, I'm having not too bad a time with the TN at the moment, touch wood it doesn't flare up again any time soon
dontasciime

Chop some chili freeze it (scotch bonnet at least) take a piece out … Chop some chili freeze it (scotch bonnet at least) take a piece out place little finger on it to thaw it a little then insert tip of little finger into left/or right nostril. Rinse little finger leave wet then rub gently inside nostril. Try not to snort in too much. Wash hands.



As memory serves, don't you suffer from this condition, or something like it? I vaguely recall you telling me about your thunderclap / cluster headaches a while ago.
dxx

As memory serves, don't you suffer from this condition, or something like … As memory serves, don't you suffer from this condition, or something like it? I vaguely recall you telling me about your thunderclap / cluster headaches a while ago.



Yup. Cluster / Trigeminal neuralgia or something rather sinister.



positively mentioned in the daily mail.
----

...Cefaly is a drug-free method for treating migraine pain and preventing migraine headaches from ever coming on. Cefaly treats migraine pain with neurostimulation...

cefaly.ca
Edited by: "seb" 27th Jun 2014
headache guru peter goadsby was the guest on lbc's clive bull show yesterday (thursday) - 2nd hour of show.

you can download the podcast for a fee.

head hurty? - http://www.ucsfhealth.org/peter.goadsby

podcast 3rd july - lbc.audioagain.com/pre…how

Edited by: "seb" 4th Jul 2014

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