Just an update on my TN journey, which I'm finding more confusing than ever now. I had my second vitamin B12 injection on Tuesday last week.
I went to see my neurologist for the second time the following day (Wednesday) and was pretty worried about what he might tell me from the MRI results as I have been having a rough time of it lately (as I'm sure you all can relate to!) with the medications all seemingly doing their best to turn me into a zombie I've been feeling really down about it, as I've had constant searing headaches from the medications and had to take paracetamol so frequently to try and get rid of them that I lost count almost. It felt like my head was trapped in a vice. My GP has been great, she's spoken on the phone to the neuro for advice about meds and has adjusted them accordingly, but still I haven't been able to function. Plus, I was convinced that the MRI would not show what the problem was and I'd be stuck on these meds unable to do anything for ever.
So I go and see the neurologist (Dr Johnson based at Leeds General Infirmary) who is the loveliest consultant I've ever met. He totally understands this crazy condition and is very attentive and doesn't make you feel like you're being rushed at all. I took my pain diary again which he always looks at and makes notes from. I also took a list of questions I needed answering. He commented because I've been experiencing numb fingers in my left hand and sometimes my right (which he says he's never come across before as a side effect of these meds). However he took a blood test to check sodium levels as this can cause tingling apparently in fingers if you have low sodium levels, which Oxcarb can cause apparently). I'd been taking Oxcarbazepine 300 mg x 3 daily and was completely unable to function, so he suggested reducing to 150mg Oxcarb plus 50 mg Pregabalin (morning) which I was on previously, but in higher doses gave me vertigo and increasing to 300 Oxcarb just at night.
Then he told me that they can see quite clearly on the MRI scan what the problem is, and that the TN is due to a blood vessel in direct contact with the trigeminal nerve. He says the vessel is normal but slightly more "knobbly" than usual and this is what's pressing on it.
So, of course that now makes me a candidate for surgery for MVD. He mentioned 2 surgeons in Leeds, one in particular who specialises in TN and has done an urgent referral for me that same day. My GP is also doing an urgent referral to back things up.
I came out of the consultation (with my husband there) and burst into tears in the corridor (relief I think that they can see it and do something about it) although at the same time I will be scared about what's to come. He says I shouldn't be waiting too long to be seen (weeks probably) so all this was good news and hope for the future.
On the day i saw him I chose to reduce my meds to 150 mg Oxcarb instead of the 300 so I could concentrate on what he told me, and I had a feeling the 300 was far too strong for me anyway. I seem to be really sensitive to any of these drugs, even in small doses!
The following day (Thursday) I reduced my meds according to what he said - 150 Oxcarb plus 50 Pregabalin in the morning and I was comfortable all day. Less headaches too. Saw my GP and explained everying to her. In the evening I took the same dose as I didn't feel I needed 300. I slept reasonably. On Friday when I woke up the pain seemed improved, so I decided only to take 150 mg Oxcarb. Pain level was pretty good and I even managed a walk out (unsteadily!) By night time the pain level was still good and i didn't feel I needed another dose of anything, so I took a chance and didn't take any. I stayed up till midnight to see what would happen. I slept badly (probably because I had no TN meds in me by this time!) but pain was OK. I was up early Saturday morning writing my pain diary to try and keep track of things. When I got up I had no pain to touch (light or otherwise EXCEPT in and around my nose on right side, which has always been there, so again i didn't take any TN medication! The only problem I had was if I sneezed or had to blow my nose (then it was AGONY as usual) but otherwise - nothing! This is a dramatic improvement for me, as usually my forehead/eye and cheek area are all really bad). So, the upshot of it is that I have not had any TN medications in me since the low dose on Friday morning (a whole 2 days ago as it's now 9 am Sunday morning!) The pain is the same - OK unless I touch near my nose/lip or have to blow my nose, then it's really intense as before, but otherwise I'm comfortable. I'm so confused!!! I daren't get my hopes up, I'll just have to wait and see as I'm sure it's waiting in the background somewhere but it feels amazing not be having to take those awful medications and be able to think and see clearly again!
My husband did point out to me that last month after I had the vitamin B12 injection I had a relatively good day the following day (but it was short lived and only lasted for the day). Now I'm wondering could it be connected to the B12 injection I had last Tuesday? I'll certainly discuss it with my GP next week. I know some people have reported dramatic improvements with B12, but this is just incredible to me if it is connected.
Well, we'll see what today brings - hopefully more of the same, but you never know where the TN pain devil may spring from I guess!!
Any thoughts or comments from you all would be appreciated, as I am completely baffled! Wishing you all a comfortable day too.
Suzy