About The Author
My name is Kiz and in 2015, I was diagnosed with trigeminal neuralgia, a chronic pain condition that makes my face hurt all the time. In 2019, I was diagnosed with acute zonal occult outer retinopathy (AZOOR) after losing my central vision in my right eye. Initially, my doctor was worried I’d had a mini stroke, so advised me to stop taking my birth control pill and my periods seemed to stop. This diagnosis was taken back in February 2022 and I was told that I have an eye disease that falls under the white dot syndrome spectrum, but I currently do not have a name for the eye disease I have.
In 2020, I was also diagnosed with polycystic ovary syndrome, which had been hidden by years of taking birth control.
I live in Bolton, near Manchester, UK, and I currently run the North West Support Group for the Trigeminal Neuralgia Association UK, for which I am also on the executive board. I also coordinate the Regional Support Groups for the charity across the UK.
I started The Pain Corner, because when I first typed the words ‘trigeminal neuralgia’ into Google, I was overwhelmed with the amount of websites referencing ‘the suicide disease’ and couldn’t find a positive post amongst the hundreds of pages I scrolled past. I created this website in 2017 to give other people hope that neuralgia isn’t a death sentence as the media would like to lead us to believe and because no one has the time or energy to trawl through medical journals either. This website is written by a real person actually living with TN.
I have a daughter called Blake, born in January 2021, and two rescue cats, Evie and Cooper, who I adopted in August 2015 when they were just a few weeks old. When I’m not blogging, I’m a Patient Support Officer at a hospital. I love going out for a cocktail and movie nights at home with my cats.
If you want to support my blog, you can make a £3 donation by clicking here. I make no money from my website, this will just make a small contribution to the cost of my domain name. Thank you for your support.
If you would like to make a donation to the TNA UK, the charity I am a trustee for, please click here.
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The Pain Corner 
Hi. I am in Australia and part of a Facebook Forum called Trigeminal Neuralgia-Australia/New Zealand. I tripped over your blog while checking out answers for a question someone had about daith piercings. I see you have noted you are on pregabalin now and wondered if you have tried Tegretol in the past. I am on a combination of Pregabalin and Tegretol which seems to work very well together. I have also had Gamma Knife (didn’t work for me) and Glycerol Rhyzotomy – which has currently lasted for 7 mths. I am pain free and reducing my medications slowly. I know the Tn will come back but apparently the operation is repeatable so I have hopes for a bit more time yet. Trying to dodge the bullet of an MVD. Hope you have having as pain free a day as you possibly can. Best wishes for your future.
Sally L
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My name is Jackie and I have TN. I have officially been diagnosed with it for about 11 years now. Sometimes I feel hopeless in my pain and other times I feel like I can live like a normal human being. This disease is something that is so hard to explain to someone that doesn’t have it. I end up learning to hide my pain and push through it just because I don’t want to have to explain it to yet another person. Anyway, I really commented because I read your blog about increased pain relating to my menstrual cycle. FINALLY I feel like I’m not crazy and someone else has experienced what I experience. Thank you for that. Praying that you have pain free days and are able to talk, eat, brush your teeth and do all the things that everyone else does without even thinking about it.
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Hi, my name is Bob Gardner. I had Classic Trigeminal Neuralgia. My very first horrific bolt of lightning shock came seemingly out of nowhere. I was relaxed on the sofa watching television. The shock picked me up and went away before I came down. Very quick. Perhaps a second or less. Then it came again and again. I was begging for mercy. That was very late September in 2017. I was very lucky that I already knew all about Classic Trigeminal Neuralgial. I had Microvascular Decompression (MVD) neurosurgery on November 6, 2017. About 45 days after my very first bolt of lightning. Dr. Robert Mericle in Nashville Tennessee performed my surgery. I woke up 100% pain free. I have been medication and pain free ever since. He has performed over 2,000 MVDs. I searched all over the USA and selected him based on his experience treating Trigeminal Neuralgia patients. I didn’t look for bedside manner, brilliant accolades, the best and most skilled neurosurgeons in the world. I wanted the most experienced actually doing MVDs I could find. I wish you well, Bob
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Hi I’m Shaun 56 from Swindon Uk. Have had MS for 30 years TN around 12 years, mine started with light tingling on my teeth I too went to the dentist he said he couldn’t see anything wrong, and put some gel on them the tingling subsided and I thought no more about it, until 6 months later when I had what a lot of people describe as something like electric shocks very minute at this stage I too googled it and made an appointment with my Dr she was great and had someone with ms in the family so knew what I was talking about and said it can be a side effect of ms, but didn’t say how bad it can get every six months it came back WORSE omg the last time I nearly didn’t make it, I had what I can only describe as someone putting a knife through my head I begged for a referral to my neurosurgeon who gave me “ Radio Frequency Leisioning “ it worked but is only temporary up to 18 months to 6 years they say I’m at 3 years now am left with numbness on my left bottom cheek I remember at my worst screaming in agony as the ambulance crew arrived saying well we can’t give him any pain relief thrashing about like that I remember sticking my arm out and keeping it still as they gave me more morphine, which I was already being prescribed by my dr along with Gabapentin at 3.600 mg 360 mg of Zomorph (slow release morphine ) the game changer for me was Lamotragine I ,lost 12 kg in a week I know this because they weigh you when they admit you by ambulance so that’s my story 😕
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