I am fairly new to the group as was only diagnised 1/12 with TN by neurologist. Don't really know which type. Some back ground info. Was admitted to hospital after 10 day right sided stabbing temporal headache worsened by wind on face and numbness in both jaws with worsening stabbing pain on chewing, no relief from conventional analgesia. Discharged next day being told to take 900mg of aspirin for pain. Lost rag with them and told them had tried this with no effect. and walked out. Recieved telephone call from g.p. same day advised urgent neuro appt had been made for me. saw neuro the next weekk and commenced on tegretol 200mg morning and night. Pain now managable but continual bilateral numbness in jaws with shock like pains on chewing.
Advice: with a doctor's assistance, investigate increases in your dose level of Tegretol. Therapeutic range for this med is generally above 600 mg/day in divided doses. The shock like pain is an indicator for Typical TN (Type 1), and bilateral pain isn't as uncommon as many doctors believe.
Read the article with interest. Noted that sometimes symptoms appear earlier which seems to fit. Approx 20 years ago saw dentist with what I thought was toothache and at that time dentist could find no dental problem and suggested possible TN and no treatment was done. He had advised that if pain continued to be a problem should come back and he would refer me for further investigations. Over the years the pain has continued on and off but never to the extent of this last episode when I had to see someone due to level of pain and outcome as in previous message. The Neurologist has arranged MRI for this Monday and follow up apointment to review results. I will discuss meds at follow up appointment as G.P. reluctant to increase meds prior to this review.
Hi Ann, Im Ann too and I can totally sympathise!! I had the pain for years before it was diagnosed and the doctors always said it was probably an ear infection although they could never see the infection, they just dosed me up with anti biotcs. When it became unbearable, as in twice a week at least going on for literally hours I went to see a GP. it took 4 different visits before the 4th GP I saw (the most senior in the practise) took one look at me and said Trigeminal Neuralgia you poor girl. It was a relief to know I wasnt dying from a brain tumour. the scan I had confirmed the TM. I have both the stabbing pain and the aching pain for hours. The tegretol will probably be built up until it manages your pain as it has a lot of side effects and its dangerous to start you off on a high dose. I started on 50mg morning and night, I am now on 400mg twice a day. This helps but doesnt stop the attacks, they are just not as frequent as before. the wind is a nightmare to me and I avoid it like the plague or else I get terrible pain. Even cold weather seems to affect me. i hope you get yourself sorted out, they will know more after the scan, You can have a second opinion if you are not happy
Thanks for replying, yes I am in UK, seems most of the people on the site are based in the states and although I am very grateful for their support, the health systems are so different it can be hard to get advice appropriate for UK. It is good to hear from someone who is also in UK and understands our NHS. I have an appt with G.P. on Wednesday and will try to get meds increased as I should really be at work and with this level of pain it is interfering with my concentration. At present I am quite happy with Neurologist. I have also recently been diagnosed with Fibromyalgia and arthritis in my ankles and feet and take Duloxetine for this prescribed by Rheumatologist. It does not seem to help the pain from these conditions either. So feeling a bit vulnerable just now.
Once again thanks for replying it is reassuring to know I am not alone although I am sorry for anyone who has to suffer this. Would not wish it on worst enemy.
Went back to doc and am currently increasing tegretol by 100mg daily, have been told to increase until I am taking 400mg three times daily and to review in 2 weeks.
Feel free to contact me too. I cant always promise to reply straight away as I sometime dont check my PC for a few days. I also have arthritis in my hands and knees. Its a pig isnt it? Ive only just got over having plantar faciitis for 5 years ending up with an op to sort it out so Im no stranger to pain!!! Hope it all gets a lot bearable for you soon. Take care. Ann