Hi Obsidian, previously I would definitely have agreed with you: 'Type 1 is definitely worse than Type 2; I'd choose Type 2 any day.' Then I came on these boards and saw the reality of Type 2. As I've mentioned, I'm currently on Lamotrigine, with almost constant sick headaches. Between that and these boards I've learnt the error of my ways. Type 2 is its own special nightmare.
Some of the things people have to put up with under Type 2 are horrendous. Like yours, for example. You've virtually got Type 1 with Type 2, so you never get a reprieve from pain, plus you get nasty surprises thrown in for fun. That's dreadful. And your description of eating is like what I had to do before meds, so I know how absolutely awful that is. I'd hate to have to go back to it; my heart goes out to you. It does terrible things to your quality of life. I remember exactly how slow an eater I became; my partner could eat his whole dinner plus drink a cup of tea and I'd still have food on my plate. I regularly used to give up, between the abject terror, sheer misery and pure exhaustion.
No, you are definitely a Zen master for navigating your way through that without meds. Kudos!
Obsidian said:
To answer your question about food - I should first clarify that I have atypical TN. The shocks I have in my teeth and gums do not sound as ferocious as what you've unfortunately been dealing with. The neurologist suspected that I also have episodes of classic type 1 TN too - but atypical is what I live with day to day, which for me manifests as nasty shocks that jump around in my teeth and gums and constant crushing, burning, aching sensations in my mouth and on the right side of my face. On bad days it also feels like an ice pick is being repeatedly jabbed deep into my right ear.
I live on soft foods all the time now. Nothing hot - I'll let a hot meal sit for at least 10 minutes before I attempt to eat. Nothing too cold, and I NEVER eat crunchy, chewy, salty or spicy foods anymore. I've become a ridiculously slow eater too, l eat like an anxious bird. Bland and boring everyday, that's my recipe for survival.
Woman with the electric teeth said:Oh, Obsidian, you are definitely a Zen master. Anyone who can cope with the electric shocks of TN without medication has definitely earned that title.
I see yours are a little more variable than mine were, with good and bad days. Mine's were just constant, all bad days. I knew I would be shocked at every meal and every time I talked outdoors, and if I went in or out - what was really at issue was when would it strike and how bad would it be? Although why I would worry about that I don't know - it was always bad. Mine came in clusters of up to four. So you'd get one or two bad shocks then two or three fading shocks. But it also liked to do a big shock, a little one or two, you'd think they were over and - WHAM! - another one would hit. Subsequently I'd be standing in a supermarket, holding my face and a shelf for support simultaneously. Tentatively straighten up, walk on a couple of feet in a cold sweat and - SLAM! - there it was again. I was a bundle of nerves 24/7. It was a bona fide nightmare. Never have I been so glad to get medication in my life.
The meds though have their own horror story, and I couldn't agree more about people working with this disease - nothing but admiration for them. I certainly couldn't have worked when I was still getting shocks, but even with the meds it would be impossible. Every time I take a new dose I get really really stupid, can barely remember the word for salt (and often don't), am so tired I can only walk about a mile before I feel like I need to sit down or I'll die, and with these new meds (Lamotrigine) I get terrible sick headaches that last for an age, and that can be triggered by walking or any movement, and, believe it or not, apparently eating fat! Bizarre isn't word for it.
But I was curious to see you said you'd learned what not to eat and drink. Do you mean like chewy foods and so forth or is your TN actually sensitive to specific foods?
Obsidian said:Zen mastery ... I wish! I just muddle through these days. It's been a process coming to terms with it. The first year I lost 20lbs, eating was a big problem, reactions to medications (some not even prescription) added into the mix. After diagnosis 17 months into it, I was at least able to make sense of what I was dealing with. Periods of remission? Not yet but I remain hopeful. My saving grace is that I take care of my grandchild during the week. I have so much respect for the TN folks that deal with this and still hold down jobs. As for the shocks ... I'm careful how much I talk, even find myself choosing what words to say before I speak, because some are worse to pronounce more than others - crazy, right? With eating and drinking I've learned what to avoid. Some days are reasonable, some days I'm totally out of action and no two days are the same. It's predictable only in that I know what will make it worse - stress, talking too much and lack of sleep being top of the list. If I come up with a magic remedy to make it go away I'll let you know:)
Woman with the electric teeth said:Hi Obsidian, thanks for sharing your story. Like I said to Karen up above there, it's great to meet someone else who has actual sensitivity rather than just aches and pains in their teeth. Mine feels so like I have a hole in my tooth with temperature changes going straight into the nerve that it's almost impossible to convince me or my brain that that's not what it is!
I've seen one or two people in the same boat as you, who either can't, or elect not to, take medications. I've always wanted to ask, how do you cope with the random nature of the electric shocks? Before I was diagnosed, I was in a terrible state; everything I did: going in and out the house, eating, drinking, brushing my teeth, yawning, talking, would bring on shocks - and they would come out of nowhere, often two or three in a row.
I felt that the terror they induced was actually worse than the pain itself. I was afraid to do everything. I couldn't eat and lost 10lbs in two weeks. I am genuinely amazed that some of you can cope with that. How do you do it? Are your shocks more predictable than mine were? Or do yours come and go, i.e. they're not constant? Or do you get periods of remission? I would genuinely love to know. Maybe some day meds won't work for me at all (I have terrible trouble with side effects as it is), and I may need the secret of your Zen mastery!
Also, many thanks for the coconut oil tip. I will definitely try that when I get my next week's housekeeping!
Chancery
Obsidian said:Hi
TN affects the right side of my face but also multiple teeth and gums which are ultra sensitive like yours. Like so many here I rushed to a dentist and went to many dental appointments over the first 6 months including several visits to an oral surgeon. I changed dentists 3 times, convinced somebody was missing something. No dental work had been done before or was done during that time, just multiple x-rays and a cleaning after the pain had started. The shocks in my gums and teeth from TN are around 24/7. During the first year I tried every toothpaste known to man - sensitivity toothpastes, herbal ones, tried brushing just using baking soda, and eventually went back to the toothpaste I've used for years. I realized after a while that it wasn't the toothpaste or toothbrush exacerbating the shocks, it was the brushing itself making it worse. After a neurologist diagnosed TN last summer it all finally made sense. I'm med sensitive due to allergies plus intolerable side effects so no suggestions for you there - but one thing I've found that gives me a little temporary relief from the zapping is swishing gently with organic coconut oil several times a day, I use it like a mouthwash.
Hope things improve for you soon:)