Friday, April 8, 2011

a bit about me part 2

Well, today I was diagnosed, officially, with Trigeminal Neuralgia. I hope that it won't be an unpleasant road ahead, but at least I can be at least slightly mentally prepared. Basically, something has happened to a major nerve in my face - the Trigeminal nerve (I believe named thus because it has three [tri] branches looking after various regions of the face). This has been causing pins and needles or shock-like pains in my face for about 5 years but it was sporadic and mild at first so I didn't really know that something was wrong. It has advanced a lot in the past 2 years, especially within the past few months so I talked to my doc about it more and had a CT ordered to rule out tumors, cysts, etc that could have been causing problems... and now I start Gabapentin medication. Fun stuff.

So in this 'part 2' of my life, I will cover a few medical issues I have had. Everything seemed to start after having my first child in 1997 lol. When he was 3 months old, I found a HUGE bald spot on my scalp. This grew to larger than the palm of my hand and I was diagnosed with Alopecia. I still have it almost 14 years later and probably always will, but it's patchy, not 'total' or 'universal'. I learned over the years that the group Locks of Love was actually started for children with Alopecia, whereas most people assume it is for cancer patients. Some do go to kids with cancer or other ailments requiring a wig/hairpiece. But the majority go to those who have severe forms of alopecia because they will never grow their hair back. As I said, mine is patchy and it's never been as bad as when it first started, but sometimes it causes me stress because my hair literally drops out all over the place and clogs up the drains, covers the floor couch and bed, my clothing, etc and it's rather embarrassing. But it's nothing fatal so I just get on with it.

When my son was about 2 years old, I was diagnosed with Hidradenitis Suppurativa. This can cause very very painful lumps in the inverse areas of the body like the armpits. I have had attacks where I could barely put my arm down at my side because lymph nodes in the armpit area would swell to the size of an EGG. Like a large egg. I havent had as many bad attacks the last few years but they can literally last 6 months, and therefore even if they are tiny, it's a pain in the neck. I was on medication for it for 18 months but that stuff was just plain nasty (monocycline) and made me sick, and couldn't be taken at all if you were trying to get pregnant (causes severe birth defects) and I decided to go off that crap.

I've had high blood pressure issues since the birth of my first child as well. He was born a bit early by induction because I got pre-eclampsia and my BP was 190/115 the day he was born. I felt like a ticking time bomb, waiting for convulsions or seizures to start. I spent 17 days in hospital before and after his birth and my BP was never the same again. I got it while pregnant with my second child so she was induced 10 days early and I was on the highest possible dose of medication but still had BP of 180/100..... and then I got it really bad with my third and final child, leading to his emergency birth at only 33 weeks and 1 day gestation. He weighed a whopping 3lbs 3oz. Three must be his lucky number tho.... 33 weeks, 3lbs, 3oz, 833pm birth time.... haha! He just turned 3 last month and has been doing great. Still on the small side but he makes up for it with speed ;)

So then we worked hard on my BP issues which would just not settle down until we found a combination of 2 medications that brought me down to 116/78 BP! WOOT! I havent seen those numbers since I was a teenager lol. At 37 years old, and after 13.5 years of struggling, it's finally at a normal level.

However, now I have to deal with this crazy trigeminal nerve damage. It may have been caused by shingles in my ear that I managed to get back in 2005. It's a very rare condition called Ramsay Hunt Syndrome. My doc had never even actually seen a case in person before so that tells you it's not very common. RHS can lead to permanent facial nerve damage but I thought at first that I had gotten away scot-free. I didn't connect the face tingling that started about a year later for some reason. I just thought it was something weird that was happening sometimes.

But about 18 months or so ago, when the tingles started reaching down to my cheek, my jaw started to spontaneously lock up. HARD. My teeth would ache from the pressure and then it would release in about 30 seconds. Sometimes less. Sometimes more. This started happening on a daily basis and I mentioned it to my doc, but we thought it might be related to blood pressure because I finally noticed that it happened whenever I had been sitting down for awhile, and then would stand up. He did mention trigeminal neuralgia to me last year and said I should look it up and see if that's what I think it is - but when I googled, i was not happy with what I found so I decided it couldnt possibly be TN. It was too scary to read about people being in such dire pain, they even had to quit work. Many could literally not even talk without triggering an episode, and things like chewing food or cold wind blowing on their cheek would set off extremely painful spasms. I refused to believe what I had could advance that far so I closed the webpages and never went back.

Now here I am a year or so later with it happening on a daily basis and getting more painful. It feels like someone is sticking dozens of little tiny pins into my face over and over,clustered together, only on the right hand side. My jaw locks up at least once a day, and it has progressed down my neck which makes me panic slightly because it feels like my breathing is being restricted. I've learned to talk myself through it but it's not fun. I had the CT scan on Saturday (yay they are starting to do them on evenings and weekends to clear the lineups!!! finally!!!), and it came back clear of anything else that could have been causing trouble... but that just leaves TN.

I have to admit it scares me. People have called TN 'the most excruciating pain known to mankind'!!!! Who the hell wants to deal with something like that in their future? UGH! I started taking the anti-convulsant medication today and have to slowly work up to a higher dose to see if that helps the nerves settle down a bit. I hope it works, but reading about others having such a struggle finding the right medication makes me freak out a little. I don't want to be a hypochondriac lol but so far in my life, every single time I've felt that something was wrong, I was right. I had a list of stupid ailments that are rare but not fatal, so it's hard to make other people understand that when everything is acting up at once, it can be quite debilitating. Now I understand the ads where people talk about 'invisible diseases' and how hard it can be to let people know you are struggling. If I were to have a week with a really bad hidradenitis attack, and then have a TN attack at the same time, I would just want to lock myself up in the corner and not come out til it's over. But life is not like that. You have to move on, keep on truckin, and try your best to get through each day.

Luckily, the TN is not 'excruciating' to me now, but it had progressed so quickly these past months, it is now at the stage where I feel the prickles and needles at any time, with no warning. Everyone has a different level of pain tolerance as well though, so what I feel is not too painful, someone else might find very distracting. What is the most annoying to me is the jaw thing. I can be talking to someone and them WHAM, my jaw is locked up tight and hard and I cannot speak at all. Just sorta mumble through incredibly clenched teeth that I can't talk. It's happened while I was on the phone a couple of times now, during important conversations, and trying to work my jaw loose brought tears to my eyes because of the frustration and the discomfort.

There is no cure, no tried and true set treatment, just a bunch of guesswork and possibly surgeries. Sometimes if they can zero in on the exact affected spot on the nerve with an MRI, they can go in and cut out that part of the nerve, or try to unwrap a blood vessel if it's squeezing it, etc but I'm sorry - that option does not sound like fun either. The nerve could be damaged even more, or you can lose total feeling in that region. Ugh no thanks. Not unless the pain does hit me so hard I cannot function... then I would have to weigh all the options. Until then, I will be trying out various anti-seizure medicines that have been found effective for treating nerve issues.


  1. Scary. I really hope the best for you.

  2. Thanks. It's just one of those things... a faceless disorder that is hard to explain unless someone else is familiar with it on a personal level. I just hold out hope it doesnt turn nasty. People with this literally cannot even smile or laugh without triggering a painful episode, but I can hope that it wont happen to me. I would not be able to work with a room full of young children if i could not even talk... so I guess only time will tell!

  3. Thanks for sharing your troubles with us, we all learn from your experiences. I hope it helps you to cope. We all put our faith in the bright minds in the medical field to find solutions to these kind of problems. (real conservative)

  4. Kez,

    One can only hope that you have now had your fill of medical issues. Do take care and all the best from our Family



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