Awaiting diagnosis and treatment

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i have had a facial twitch for a few years now which escalated two years ago following the passing of my father. it turned into the most horrific pain on the left hand side of my face running across my brow, cheek and jaw. i was put on amytriptaline for the twitch and then carbamazepine for the pain. i am 25. i had a mri last year on my brain to check for things like tumours etc which was. GP believes it to be TN. got follow up tomorrow (21/02). last doctor mentioned surgery which i know is a big step but at this stage am willing to try anything, its got to the point where i have wanted to drive into a wall just to distract from the pain. the pills are taking the edge off to a point but making me sick which isnt great. ive heard about TN and heard it tends to be older people who get it so im a bit alone at just 25. Am hoping to get some answers and a plan of action tomorrow but would be grateful for any advice. thanks. xx

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  • Posted

    Once you get your diagnoses it will put you in a position where you can select which treatment route to take. The key is to research the different treatments. The meds for TN can have a lot of side affects. My pain responds to heat some people use ice on the affected area for pain. There is a lidocaine cream at your local pharmacy that helps when applied to the affected area. Hope you get relief soon.

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    • Posted

      Thanks for this. I find ice is best for me but only in small doses as i find the pressure of putting the ice pack on my face ends up causing more pain. Bizzarely i find putting an ice pack on until its numb, and then putting something hot like a hot mug of tea on my cheek helps even more. No idea why. I didn't want surgery when it was first mentioned last year but they could chop my head off and i'd be happy. My worry is that they won't do anything.

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  • Posted

    Sorry to hear that you are going through this at such an early age. Please click on my profile name to read my posts. I went through the surgery in 2016. Have posted my experiences. Will be glad to answer any questions you have.

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    • Posted

      Thank you, i will have a read through. I didn't want the surgery but now they could chop my head off if it helped. Hope to get some more plans tomorrow. My worry is they won't do antyhing.

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  • Posted

    I’m so sorry to hear that you are suffering with this. I was 26 when I was diagnosed so I understand how awful it is to have this condition at such a young age. It was 14 years ago and unfortunately surgery and destructive procedures were not great at the time but things have come on a lot since then. I don’t know where you live but the first thing I would say is make sure that you have a good surgeon if you are going for surgery. there are so many wonderful success stories but you need somebody who knows what they are doing, don't be afraid to research and ask. all of the medications have awful side-effects and awful with drawl when you come off them. I used pregabalin for many years and found although the side-effects and withdrawal are awful it did relieve the pain well although I often would have to be on large doses that were recommended by my neurologist but were much higher than Dr recommendations. I tried switching to gabapentin and was on it for two years maximum dose and still getting awful pain but the side-effects weren’t quite as bad but in hindsight it didn’t work so wasn’t worth it. I had good success with the glycerol injection but unfortunately when coming off the medication the pain started to come back but definitely not nearly as bad as before. I switched back to pregabalin as I only need a very low dose at the moment and I’m on 100 µg twice a day which isn’t so bad, disapointing of course but more bearable than before. research the medications and try different things until you find something that works for you while you are waiting for something more. If you are worried about the surgery the destructive procedures are also a good option and less invasive. Other alternative things to try our CBD balm, Accupuncture if they know what they’re doing and homoeopathy again if they know what they’re doing, I have had some success with all of these. also something a lot of people don’t know is that high levels of potassium in your diet will aggravate the neuralgia, cut out bananas, raisans and other high potassium foods. wishing you all the best xx

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    Thats interesting what you say about food. I eat bananas every day and raisins probably every other day. Didn't give it a thought they could be aggrevating it. I don't mind having the surgery now, if that's what he suggests, because i know it will be a good option. I'm on so many other pills for other issues i don't really want to be on pills for this long-term, especially so young i end up rattling!

    I do have pernicious anaemia and apparantly a b12 deficiency can increase the risk of neuralgia, which i have mentioned because no-one else seemed to have picked up on it, so i will mention it tomorrow but not sure they're going to do anything becaues i already have injections. Hopefully i'll get more answers tomorrow x

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    • Posted

      thats very interesting, give up the bananas and raisins, also songram grain and coconut water are high in potassium. Try googling high potasium foods and see if theres more you eat a lot of and just cut them out B vitamins are helpful for sure, I take a strong suppliment daily. I understand the rattling, I have other illnesses too, its very hard. Best of luck xx

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