Can I help you?

[Sensei_Mark]

Hi, I'm new on this forum, but I've noticed many posts with concerns about TN (trigeminal neuralgia).

I am a 'recovered' victim of this nasty mother of all pain.

If I can help with any questions, give me a shout. 👍

[Lilacc]

Hi, I've had TN for three years and tried (and am trying) various treatments. Mostly 'natural' (eg elderberry, B12 ). If these treatments don't work, I'll have to give the anticonvulsants a try (again) - am just holding off due to possible side effects I'm not keen on experiencing.

I'd love to hear how you 'recovered'.

Thank you

[Sensei_Mark in reply to Lilacc]

Hi, so sorry for the late reply, the system didn't notify me. Recovery was only due to MVD surgery. No other meds, natural or otherwise, helped me. Just an excellent neurosurgeon.

[mully]

Hi Sensei-Mark I was rushed into A&E as they thought I may be having a TIA but it looks like trigeminal neuralgia It is the worse pain I have experienced in my life How did you get through it? Is there life after TN ? because the pain is just so frightening Thank you your help will be much appreciated

[Sensei_Mark in reply to mully]

Hi mully , welcome to the forum, albeit about the worst pain known to medicine. It was year before I was diagnosed. In that year, I was on sick leave and saw many doctors, surgeons and had many scans of various types.

The TN was atypical. The pain was constant. After all other meds, including morphine, I was on Fentanyl patches (75). This didn't help either.

Some people do get relief with meds, but not me unfortunately. It was only when I was referred to one of the top neurosurgeons in the UK, did I get any help.

I had MVD. Successfully thankfully. Still pain free after 16 years.

So in answer to your question, unless you are extremely unlucky, yes, there is life after TN.

Hang in there and good luck 👍

[Sarahp79 in reply to Sensei_Mark]

I've just been diagnosed with TN. I've been put on Carbamazepine and Amitriptyline. Just a question regarding Tinnitus....I suffer with everything on my left side and since having the pain I've got a continuous ringing in my left ear. Did you experience this?

[Sensei_Mark in reply to Sarahp79]

Hi Sarahp79 , I've had tinnitus all my life, so living with that and ATN was the worst thing possible for me. The meds you have I'm not entirely sure. All I can suggest is read the prospectus. Neither medication helped me. I tried dozens. Even Fentanyl didn't help. But don't let my negativity get you down. Meds do work for most people, that's why they can go so long before invasive surgery. Read up and keep strong 💪

[Sarahp79 in reply to Sensei_Mark]

Thank you. I somehow think it's linked as before this I had no Tinnitus and it's only in my left ear. The tablets are helping slightly but I've not really been on them long enough to say. I'd never heard of TN before all this so I've been researching and getting information but nice to actually speak to people who are/ have had it. No-one else has heard of it let alone can understand it. I'm waiting to see a neurologist at the moment.

[Sensei_Mark in reply to Sarahp79]

Best of luck 👍🤞