I live in Yorkshire, England
Hi Jane,so sorry for long delay! Iāve had a very up and down two weeks,maybe half week good other half sucks.I am chasing up a lost appointment at the Eastmanās clinic in London.I seem not to be making much progress in terms of a treatment plan from any medic at the moment and feel low about this.Enough I need to carry on researching and askingā¦can be tough though as you know,indeed we all know! Did you get your MRI results?
Hi Rachel,so sorry you are suffering so badly,it can be so awful and depressing ā¦hugsā¦I see you live near Liverpool.The Walton Centre is there and meant to be very good facial pain wise!
Hi Chusty,what sort of facial pain do you suffer from? I have type two and have had for years.For several years I was on 600 mg of pregabalin but it did give me a euphoric feeling and eventually I brought the dosage way down.At that strength (600mg a day)I had no pain at allā¦blissā¦bliss! I have managed the best I can in the last few years on 75 mg pregabalin and pacing and practising mindfulness and trying to just beā¦however this is not enough I realise and am upping the pregabalin but will never go above 300 mg.How are you managing your pain? Hope today is a good day for you!
To be honest I had never known about types, but looking it up I would say type 1, but also some type 2. I have the stabbing pains in my jaw, and more recently my eye. The eye pain is almost beyond enduring. When it is attacking I canāt even swallow without excruciating pain. My jaw pain has now settled into more type 2, but can be very painful when eating. More than once I have cried into my food (no added salt needed!)
Yesterday was a very bad day, but today I have had no pain at all. How weird is that? I have never heard of pregabalin, or been offered it. I will look it up and see why. Do you have days when you are in a lot of pain? Is it in one or more areas?
Iām near Brighton in the UK. Age 57. Diagnosed with TMJ years ago. But symptoms have not been in much evidence for a good while. But for about a year I have had head pain and the āice pickā stabbing in my left ear. GP useless. After extensive research I believe it to be Geniculate Neuralgia. Seeing a Neurologist in a couple of months, who has already said he has little knowledge of the condition!!
(weāve been in contact, via email)
I think the UK is definitely lagging behind in knowledge, and treatment, compared to the USA.
I have other diagnosis as well, including Fibromyalgia. I take Lyrica for that. But itās not helping with the Neuralgia pain.
I also take morphine for back pain. That doesnāt help with it either.
Hi Chusty,My facial pain is way worse when I am stressed ,when I lack sleep and when I do too much.Yes I too have good days and bad days and on a bad day I often find that when I sleep at night somehow the pain is reset and Iāll have a good day!What medication if any are you on? I have mainly right sided pain and nasal congestion caused by the trigeminal nerve not my sinusā.All the best!
Hi 
I hope you are well and the pain is under control x How are you coping now we are heading into the cold weather? There is a group in Facebook land for sufferers of TN in the UK if youāre interested, I know that your story will interest the members there https://www.facebook.com/groups/558857264148050/ come and see for yourself x
Hi,
I have been living with TN since I was 18ā:slightly_frowning_face: I had lots of remissions when I was younger. I was formally diagnosed when I was in my early 30s and became a member of the hospital system after my first daughter was born at 33, I couldnāt kiss her without pain 
First medication startedā¦
Boring nowā¦on and off, lots of drugs,a failed MVD, more drugs, an amazing consultant at addenbrookes, a good doctor and I am now with the pain teamā¦and on pregabelin 450mg carbamazepine 800mg lamotrigine 500mg, alarms on my phone to tell me when the next medication is and trying very hard to accept I have chronic pain.
I am 43 now and have 2 beautiful daughters a supportive hubby and we live a very happy life.
Sarah
Hey, new to this site and live in England. I have neuralgia and have been taking tregratol for several weeks now. I have pain during the day but in the evening it becomes unbearable!! Still have several weeks of the tegratol to take, not sure if I should finish the course or just go back to the doctors now? Does anyone else suffer with the intense pain in the evening? Need help and advice! Xxx
Hi, Iām Emma, live in Gosport down by Portsmouth on the south coast. Had TN diagnosed about a year ago. At the moment Iām on carbamazepine 300mg, amatryptalin 200mg and indometacin 100mg. I have a serious opiate allergy so Iām very limited pain relief wise. Iām trying to reduce my meds at the moment but Iām scared tn will relapse again. Any advice would be great. When I have a flare the only thing I can do is have miacane nerve blocks daily, obviously not ideal.
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It took several weeks and increases of tegratol to work, so Iād say stick with it. Itās great when it works, get yourself a good dr, the maxilla facial team are brilliant with me. They see me every 6 months but phone every month to check how Iām doing and advise on drug changes. It saves me going out as that can be a challenge, especially if the weather is bad.
Feel free to message if you want to chat. Not that Iām an expert, but Iām a good listener.
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Hi jenny6
I live in Surrey and have this Neuralga but on top of head so I say itās occipital neuralgia but neurologist has Atypical neuralgia I was on amytripline now on Tegretol had several set backs now a bruising on skin not visible this pain awakes me about 2am and now stays for 6days not so long as it use to but my doctor wants to see me now lm afraid he will take me off Tegretol and to start on something else so at the moment anxious incase this pain comes on more painful as with Tegretol it seems to calm.it down
I find it a little depressing, to hear drugs, pharma etc, being mentioned without alternatives. Great they get symptoms under control, but are they the answer to the problem? They seem to control a symptom. Now Iām not saying I have the answer, but alternatives are worth considering.
Iām in Lancashire. I have Geniculate Neuralgia and TN but I havenāt been given a type. I think go between the two with TN2 being there all the time.
Iām off work ill with it at the moment. The meds are affecting me and I was reported at work for falling asleep.
I see the doctor next week - Iām not ready to go back to work as Iāve had to increase my Gabapentin as the pain is constantly there.
If anyone can help me with what I should say to the doctor in order to get another sick note I would be so grateful. My brain is just not working and I am so worried that she will say Iāve to go back.
Thanks so much, Liz xxx
Liz,
Worth considering is your neck as a cause. You have two rare disorders which anatomically have a common, as in the neck. Especially worth considering if you have; been recently stressed, if you have had a major stressful. event full stop ( OK who hasnāt, it is relative, but regardless of time frame), had dental treatment, had physical trauma in the run up to this complaint. Any of these is worth considering your neck as a cause, more so, if you suffer neck tightness/ pain, previous neck problems. If so, consider physical therapy, in all itās guises.
Unfortunately this condition started when I was 14. I was really well, sporty and had no injuries.
I was playing netball at school outside in the wind. I was in agony with terrible pain in my right ear.
I wondered why no one else seemed in pain, just me.
37years later I was finally sent to a neurologist. Iād typed all my symptoms and incidents on 3 x A4 paper, which Iād copied several times.
I gave this to the neurologist and a trainee and the nurse and sat there whilst they read my writing.
The neurologist then performed a test where he used a wooden spatula with a fine end to draw along each side of my face - no pain on the left side. Pain on the right side which intensified even after he had stopped.
Within five minutes of going in his office he confirmed that I have trigeminal neuralgia and Geniculate Neuralgia.
He asked if I have herpes, which I do - he said some experts say there is a link to herpes and TN. Itās strange that I get herpes on the left side of my face and TN on the right.
So I really donāt think this is all due to any neck problems Iām afraid.
Please can someone advise me what to say to my doctor in order to receive another sick note.
I am typing this with awful pain in my ear, like a drill boring deep inside. How can I work like this, as I will have to take extra meds yet again.
Sorry for the long post. Thanks for any help you can give me xxx
Hi guys sorry to hear you too are all suffering. I have atypical TN and fibromyalgia/ME. I have been off work a year and have lost my job after 18 years. I take tegretol, baclofen, tramadol, narproxen, paracetamol and recently started ketamine. I am only now getting a 70% bit of relief. I am in a constant drowsy mood. I have 7 alarms set a day as in total I take 36 tablets plus ketamine. Has anyone else tried ketamine??? I am in Scotland.
Hiā¦Iāve been searching for someone who also has GN! I do have also have TN but after surgery a year a go the pain is ok in comparison to what it was. However the Gn pain is unbearable. Iām on so much medication I walk around like a zombie which is very difficult when trying to work and look after a family.
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So nice to meet somebody. And sorry for the late response. I donāt find this site easy to use!