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(14 Posts)
wineandsunshine Mon 12-Feb-18 07:40:41

Any idea on how long it will take for this to work?!

I've been told to up to 200mg so it's been a week so far of 100mg. Treatment for TN - although I'm not 100%sure it's this.

I still have pain in my forehead just about left eyebrow!

timeistight Mon 12-Feb-18 10:58:32

I found it worked instantly if I took enough. However, I could not get a balance between being out of pain and awake! I was either unable to stay awake, or in pain. I couldn’t get to a point where the pain was manageable and I was awake. Awful times.

Incidentally, my issues, which were initially diagnosed as a series of mini-strokes (terrifying in your 40s) and then as trigeminal neuralgia, turned out to be toothache.

WeAreGerbil Mon 12-Feb-18 17:28:41

I thought it was around two weeks, though it might take a while to get the dose right for you.

wineandsunshine Mon 12-Feb-18 18:10:15

Ok thankyou - I will see what happens over the next week or so - I have another GP apt at the beginning of March to talk about it!

I do feel quite sleepy now you mention it too!

WeAreGerbil Mon 12-Feb-18 19:58:23

There's a good UK trigeminal neuralgia Facebook group where you will find lots of people trying to manage the same thing.

wineandsunshine Mon 12-Feb-18 21:25:25

Thankyou gerbil!

WeAreGerbil Tue 13-Feb-18 10:19:27

No problem, it seems to be a nice group of people and you can generally find someone with an answer to your problem! Why do you think you may not have TN? I have had a compression on my nerve shown up by MRI but I don't have the traditional symptoms, I have some pain and tension around my eye and sinus and numbness in my face but not the shocks.

wineandsunshine Tue 13-Feb-18 10:34:33

I've joined! Thankyou - it seems a useful group.

I'm not sure my symptoms are - left sided headache/jaw pain, numbness, swelling of eye, nausea (at times), tinnitus.
I've had no referral yet, I've had bloods, hearing test and eye test done.
No shocks like you either - it's more dull ache or burning ache.
Just hate taking tablets!

WeAreGerbil Tue 13-Feb-18 11:56:36

Hmm, some of that doesn't sound typical for TN, some of it does. My pain isn't bad enough for tablets, I did start on amitriptyline, but decided to stop as like you I don't like taking stuff, though I would if the pain was bad enough. Some people take high dose B12 and find it works, I do but I'm not sure it's made a difference. I've changed my diet and try to stress less though not sure that's made a difference either! Even just the numbness is horrible though. I've got a follow up neuro appointment next week so maybe I'll find out more!

wineandsunshine Tue 13-Feb-18 12:29:45

Did they refer you just on the pain then gerbil? You will have to update me on here how you get on.
I think it's hard when the pain comes/goes and I just 'cope' with it and get along with life!

WeAreGerbil Tue 13-Feb-18 12:53:41

I ended up paying privately for an ENT referral because I (and the GP) thought it was sinuses that was causing the pain. ENT referred me to the neurologist after investigations and I had an MRI (again privately, I'm not sure I would have got the referral on the NHS to neurology). Because a nerve compression was shown, the neurologist said he'd refer me to a neurosurgeon for discussion about surgical options, so I was referred back to the NHS. They did an MRA (which focuses on blood vessels) but now I have an appointment with the neurologist again not the neurosurgeon, so who knows! I still have ENT problems though, and it seems odd that I would develop two unrelated conditions in the same bit of my body (only on one side) at the same time. Also apparently people who don't have TN can also demonstrate nerve compression! All this has taken a year so far even with paying privately for some of it. I've got less freaked out over time that I'm going to get the bad shocks, which helps, but it's all still very unsettling.

wineandsunshine Tue 13-Feb-18 13:22:24

Oh wow that is still some time even going privately isn't it! Fingers crossed you get an apt soon.
I do have faith in my GP just want a definite diagnosis instead of trialling random drugs every time.
I'm sure I've hit 35 and my body is falling apart wink

WeAreGerbil Tue 13-Feb-18 13:28:57

Try 49! Though actually I started getting various exercise injuries in my 30s.

Unfortunately the treatment for TN does seem to be a lot of experimentation with various drugs, as all the surgery carries various risks, and I think because it's not very common it's not a priority for research. The book Striking Back from the TN Association is very good if you want to do more reading. Good luck!

wineandsunshine Tue 13-Feb-18 13:46:42

Thanks gerbil - your a superstar! And good luck too x

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