I was diagnosed with Trigeminal Neuralgia 4mnths ago. does it increase in intensity over time

[patrici]

[XHelp]

Hi Patricia, sorry to hear you have been diagnosed with TN, I was diagnosed in January, are you on any sort of medication? im sure you must be, I am on Tegretol, it started at a very low dose and has gradually gone up in amount. My tn is more under control than it was but Iam getting a lot of breakthrough pain, and am seeing a specialist team in June. From what I have read on the forums tna.org.uk everyone seems to be different mine is left sided and typical. Hope this helps please message me if you wish all the best Karen

[patrici in reply to XHelp]

Thanks for your help. I am not on any medication as yet because initially it was manageable but over this last weekend the pain has increased and is located centrally behind the right side of my nose and upper lip. This makes it extremely difficult to eat, drink and speak. Is this flair up normal and Will it settle down again? I am trying to avoid the medication because of the possible side effects.

[XHelp in reply to patrici]

Honestly I have no idea, I could not function without the medication, my gp started me on 100mg at night then gradually increasing slowly over a period of many weeks inorder for it to build in my system and gradually acclimatise to the drug and avoid the side effects. I do get mouth ulcers but not the ones they warn you about and a slight rash but that settled. Tegretol isnt like taking a normal pill such as a painkiller the effect is not instant, but I certainly know if I am due to take the next dose. It is a personal choice I coped for about three weeks but was losing my mind couldnt drink eat talk go outside even bathing started it off. Thought I needed to pull all my teeth out etc was glad of the relief I got from it but it did take a long time to get to feeling ok. I cant really advise there is a lot of support on tna.org.uk but you have to pay tojoin or the american site living with tna is free you might get better help there, I was lucky my gp is excellect.. hope this helps a bit Karen

[patrici]

Thanks again for your support and answers. I have seen my GP today and she has put me on Tegretol at 100mg once a day to start and has told me to see her again on Monday to check how I am reacting to it. I have read that it can make you drowsy, did it make you drowsy?

Patricia

[Moby]

Hi Patricia, I was diagnosed last year in July. My GP prescribed me Tegretol, but I took too high a dose to quickly, I went from 200mg to 600mg within a week (this was wrong, but I was ill advised and in a lot of pain) the side effects where severe but now after almost a year and living on a daily dose of 500mg, the pain is under control and the side effects gone. I have a normal life, a busy full time job and I do lots of other stuff. The one major adjustment I had to make is that can't drink anymore with this medication. I get really hung over and it just doesn’t work, so I gave up drinking. On the plus side, this gives me back lots of quality time in the weekends and doesn't cost a penny. I'm a member of the TN.org.uk site and on there you can find out that no one experiences the same pain or side effects. Tegretol seems to be the most common and effective though. Take care, the side effects will wear off with time....Viv.T

[patrici]

Thanks for the info. It does make me feel less alone hearing other sufferers stories about their experiences. Because I have only recently been diagnosed and the initial problem was very low level, where I would only get pain if I touched my face in a particular way. I was not as concerned as I am now that the pain has increased and is stopping me from talking. eating and drinking comfortably. This is a major problem for me as I am a teacher in a senior school; my job requires me to talk a great deal throughout the day and I am concerned that this will be very difficult until I can get the pain under control with this medication.

Patricia