The definition of rare
Posted , 7 users are following.
Definition of rare:
- unusually good or remarkable
- Not found in large numbers and consequently of interest or value
- (event, situation, or condition) not occurring very often
In my situation (and many of you as well) having this "rare" condition works against us in so many ways.
It's so rare the average person usually won't know what it is or that it even exist.
And when you explain it they don't really understand. In general I get asked if its fatal.
since it isn't they'll say .... oh so you're going to be okay.
Yeah I'm not going to die so EVERYTHING IS GOING TO BE GREAT!!!!! 😕
And since it doesn't kill you it seems like there's no big hurry to truly research this God awful condition and find solid solutions/cure.
In my opinion if 7 out of 10 people suffered from TN worldwide we would be researching solutions/cures non-stop.😝
Maybe it's not fatal but it sure can suck the life out of you. I've been dealing with this for the past couple of years.... I thought I had a combination of lockjaw, TMJ & wisdom tooth pain. Then the mother of all attacks hit me in June of this year and I was finally diagnosed with TN I & TN II.... lucky me eh?
I'm usually a very positive person I've always looked for the silver lining in the clouds, glass half full type person. But I'm a single mom... the sole breadwinner... the Matriarch of my little family and now I'm afflicted with this rare condition and it is destabilizing everything I work so hard to keep together. 😒
My pain has been non-stop since early June.
Since I have both type I and II finding the right meds is a challenge but it's only been a couple of months and I know it can take time to find the right combo. The past 5 days have been horrible but I've had much worse. My job is being severely affected ... to the point that I fear I may lose it. My memory is terrible, my brain seems slow....I'm exhausted ALL the time even when I wake up. It hurts to talk ...eat ...drink ...brush teeth ...you know the drill. 😳
Sorry so winded I just really needed to vent. Though I've read so many stories here that have really helped me. 😃
You guys are inspirational because even though you're dealing with this nightmare condition you still take the time out of your life to help others with your kind words and advice. 😊
My mom lives 17 hours....1,095 miles away and I don't have any other close family members. I don't have any real friends only acquaintances and for the first time in my life I feel truly alone and this condition just makes me feel even more isolated especially when I can't speak. Feels like I've taken a a vow of silence 😆.
On a positive note I am so grateful for my chlidren & my furr-babies (2 cats 1 dog) who have been by my side rooting for me to get a grip on this thing.(they think I'm superwoman hahaha). For them I must stay positive, brave and committed to find a doctor that will truly wants to help me with this condition... even if its a RARE thing..... that's not fatal.😜
1 like, 16 replies
susan33651 Shayla1127
Posted
Hi, I understand your pain and wish you well and good luck with finding a balance between your medication and your daily life.
My experience has been very positive, in the sense that I have a fantastic GP and well informed Dentist. The neurologist was also good, though I may need his services again soon.
I have bilateral TN I and TN II (all three branches both sides) after an attack I get migraines which then trigger more attacks. These epic attacks can go on for about a week to ten days. Less often since the Gabapentin. I have attacks throughout the day most days but these are short-lived.
I have Carbamazepine and Gabapentin, in addition to Amitriptyline. I have an arsenal of pain killers too! I carry them everywhere in all my bags! 🤣 I set an alarm to make sure I take the drugs. A very hot (almost volcanically hot! 🤣 🤣) hot water bottle is useful too. Bending down, fans wafting over my face, sweat trickling, eating, cold, talking and certain facial expressions will trigger the pain among other things. Every day is minefield and I just get up, take the pills and crack on with life. I have a very supportive family and my work colleagues are all aware of my condition. Luckily, I work in a hospital (I'm a registered nurse) and more nurses and doctors know of TN than the public at large. I have to explain it fewer times than most of the other forum members but I still have to several times a day! 🙄
Once again, I hope you can find the best possible balance in order for you to maintain something resembling a 'normal life'. 🤗🤗