And is it any good? It is VERY expensive here in the UK (roughly $105 or £52), but it does look very interesting, as it has a lot of input from various specialists. Does anyone own a copy, and is it worth having - or is it too specialist for the layman?
I bought it a couple of years ago, well worth it for understanding some of the deeper and more technical aspects of TN than you can get reading articles. It’s a medical textbook though so you need a thorough understanding of the language used. Extremely satisfying, I go back to it again and again.
Thanks, Bellalarke, I appreciate you replying. Do you have specialist medical or scientific knowledge or did you cope with it just as a layman? Dr Google is there to help out with terms, would that suffice or would I be struggling?
I built up my knowledge base gradually. I got two brain colouring books from Amazon to learn the anatomy (one of them had more cranial nerve info). Then the first big thing I had to learn after I got the lay of the land was how action potentials in neurones work. I did that through the Kahn Academy with great little graphic videos, an online school of just about everything. It also helps to know something about ascending and descending pathways. After that it was easier to get the lay of the land. I go on binges of learning and then I can’t take it anymore and give it a rest:). This makes it easier to talk with my neurologist and what we might try next. Also it’s not as scary anymore. It’s still rotten but at least it’s really interesting.
Good luck with the book if you decide to get it.
Brain colouring books? How wonderful, and what a great idea! I've never heard of the Kahn Academy so I'm going to check that out - thanks for the tip.
I admire the way you set about this and how proactive you've been. A lot of people just flounder about in pain, smothered in drugs, and by then they are so tired they can't do anything to help themselves. It's always very cheering to see someone tackle it intelligently and with determination.
Oh I’ve done my share of floundering:). And I operate on 4,800 mg gabapentin/day so spent lots of time getting used to that! So not speedy but determined, really determined. Also a huge curiosity which off-sets the “poor-me-s”. We need to get past the fear and sadness an illness like this brings.
Also I had a pre-existing interest in brain but more in terms of emotional pathways, etc. and had done some reading (Emotional Intellegence; Buddha’s Brain) but had never even heard of cranial nerves!
And actually, when I think of it, I stumbled on the first brain colouring book at a University bookstore when I was there with one of my daughters. I was so excited! This was probably a year before the TN diagnosis when it was thought I might have a small bleed, and god knows what else. My pain started in ear, mastoid area, face, inside mouth, teeth, scalp, hair, throat, and on and on until whole left side affected, and now whole scalp. But never presented with the classic TN signs. My electrical zapping, shocks, were deeper inside and burned itself out after about seven months and now more neuropathy-type pain which is explained in the Jannetta book.
Ty for sharing! Your info is helpful
Oh, me too. For the first six months, easily, I was messing about with medications, trying to get them right. They made me so ill, and so stupid with tiredness, I could barely function. Add to that the depression the diagnosis caused - I felt so useless and ill-fated - and the fact that I had the brunt of it in (a Scottish) winter, when my mood drops drastically anyway due to lack of sun, and I became a chronically depressed couch potato. Fortunately, I was saved by the pain controlling effects of Vit B12 injections. Unfortunately they haven't proven to offer the cure/remission I hoped for, but they have done astoundingly well and I am fairly normal on 300mg of Carbamazepine (I was on 1,200 pre Vit B12), so all things considered, pretty good.
But I have a kind of 'quick, quick' desperation, wanting to get things done before the pain comes back or winter sets in again! My GP believes in nothing but medication, to the extent that he ignores other health problems, so I'm on my own, struggling through info to try and find something that might help me at least slow the degeneration, even if I can't land a cure.
I just read something hugely interesting in the new TNA newsletter about how T-cells are playing a part in women's experience of (nerve) pain, which means that immunity is playing a part, possibly, in our TN. I have always felt I have an underlying autoimmune problem but my doc doesn't want to hear. I suffer from neutropenia (low neutrophil count) and anaemia so I find this very interesting research.
But I am also fascinated by the way you say your pain has morphed over time. I only recently discovered that some specialists think TN1 becomes TN2 and that TN can change its complexion over time. People always say 'it's degenerative' but I just thought that meant it gets worse, not that it changes its nature. And it seems to be so unpredictable. No two people's experience of TN is the same to start with, but the changes are completely different too. It really is a (morbidly) fascinating disease. Just wish I was watching it in someone else, not myself!
Bellalarke said:
Oh I've done my share of floundering:). And I operate on 4,800 mg gabapentin/day so spent lots of time getting used to that! So not speedy but determined, really determined. Also a huge curiosity which off-sets the "poor-me-s". We need to get past the fear and sadness an illness like this brings.
Also I had a pre-existing interest in brain but more in terms of emotional pathways, etc. and had done some reading (Emotional Intellegence; Buddha's Brain) but had never even heard of cranial nerves!
And actually, when I think of it, I stumbled on the first brain colouring book at a University bookstore when I was there with one of my daughters. I was so excited! This was probably a year before the TN diagnosis when it was thought I might have a small bleed, and god knows what else. My pain started in ear, mastoid area, face, inside mouth, teeth, scalp, hair, throat, and on and on until whole left side affected, and now whole scalp. But never presented with the classic TN signs. My electrical zapping, shocks, were deeper inside and burned itself out after about seven months and now more neuropathy-type pain which is explained in the Jannetta book.