Hi, I think all of us go through this mean period sometime or the other. I have been fortunate that I have a very understanding husband and son and daughter, who have been through each and every attack with me, the last twenty years.
When it all started, I thought it was a bad dream and it would end when I wake up, but trust me waking each morning was a worse nightmare as I knew I had the whole day to face the pain, But yes, I have relatives and friends who keep asking me if its a kind of headache, or do I hear voices?!!!
When the attack stops and I',m pain free, I refuse to think or talk about it. I hate when people try to tell me its my imagination. That it will all go away if I just let it. Thats when I feel like giving them a small dose of it. But then, truth be told I would not wish this pain on my worst enemy.
So welcome to the club- but dont be afraid, just remember IT (the pain) has to end sometime.
Hear voices?!! You mean, besides their snarky little comments? Honestly. And the "imagination" comments really burn my biscuit. I am lucky that my family is supportive, too, but those closest to me know what it is like under full attack, and some things you just can't pretend. As to others.....well, I prayed that God would teach me patience, but I never specified how.
Yeah, I too find it hard to believe that in today's world, when you can have all the info,you need on the net, how difficult is it to atleast check out what we guys are actually going through. I feel so happy since I saw this site and signed up, its like I am with my family, people who hv gone through this - who understand what we are going through. TN hit me when I was 30 and the last 20 years,mostly because of their insensitivity. I hv stopped interacting with others, just my immediate family who are very close to me and a few friends who are always there for me. When I am better, I turn to cooking- it has helped me a lot.
This is really bad but I find myself watching more tv than ever. It's is nice to stay in bed,talk to no one so the nerves get a chance to sleep and I don't have to worry about facial contortions while eating with friends. But the best thing to do is to log on to Living with TN. Maybe we should have a facial contortion page.My meds have returned me to a mostly normal life but it took a long time to get there. I remember when after finding successful meds, I thought I was better and stopped the meds. Ouch! Bad idea. I most always have low level pain and It still hurts to brush my teeth Biting into stuff reminds me I'm still a member of the Disordered. A lot of it was my fault for not being aggressive enough in researching my symptoms. .So friends, be patient, don't completely rely on medical professionals, keep researching and of course hang around with "Living with TN" Sorry, I have more to say but I've got to get back to Law and Order.
I know what you mean. Easier to lay around and watch tv and not talk to people. Love your Law and Order comment at the end. TOO FUNNY!
SF Bill said:
This is really bad but I find myself watching more tv than ever. It's is nice to stay in bed,talk to no one so the nerves get a chance to sleep and I don't have to worry about facial contortions while eating with friends. But the best thing to do is to log on to Living with TN. Maybe we should have a facial contortion page.My meds have returned me to a mostly normal life but it took a long time to get there. I remember when after finding successful meds, I thought I was better and stopped the meds. Ouch! Bad idea. I most always have low level pain and It still hurts to brush my teeth Biting into stuff reminds me I'm still a member of the Disordered. A lot of it was my fault for not being aggressive enough in researching my symptoms. .So friends, be patient, don't completely rely on medical professionals, keep researching and of course hang around with "Living with TN" Sorry, I have more to say but I've got to get back to Law and Order.
Hi, Its so good to hear from you guys. I finish my days work and look forward to "Living with TN". Yeah I can understand you wanting to stay in bed and not have to worry about facial contortions I find it disturbs people to watch us eat or talk, - when I am during my attack, I kind of actually have to slip small morsels of food through one side of my mouth. I have learnt all sorts of ways to eat and drink to avoid those awful jabs. I also want to know if you guys feel very tired. Coz of late that is happening to me a lot. I read that its a side effect of carbemezapine,
Hi Daz, Yep, my energy level has definitely dropped. My meds, gabapentin, lamictal and oxycodone guarantee this. But I find that when I get up and start moving, I'm better. Just about everything changes with the Evil Disorder.I'm still reluctant to dine with strangers unless I "drug up". My social life is different but I'm fortunate enough to have very supportive friends and family
Slowly chewing gum helps keep the nerve pliable. I don't care about drug addiction. but the gum addiction and cost is driving me crazy.
I, too, have learned new ways to eat. Isn't this fun ??!!
I'm Rick Bruce and I post comments here occasionally. I have Type 1 TN on the left side of my face that began during Christmas week of 2008. For me, painful episodes usually last about 1-2 months, with excruciating gum-line face Taser jolts that come daily; then I'll usually have a week or so of reasonable sanity before the next solar flare-up of electrified pain. My neurologist has me on a daily regimen of Tegretol and Gabapentin. That's my story in a nutshell...
Now, a question for you, if you don't mind...I'm a musician, and in the early to mid sixties I used to listen to a political "folk singer" named Phil Ochs (among many others); whose songs were insightful, but rather dark and morose...
May I ask why you've chosen phil ochs as a user name??
Blessings,
Rick Bruce
phil ochs said:
no not mean at all i wish it every day,not for a long time not a full bout not even a day but just one, one quick 5minutes worth cos ive tried and tried to explain it but not sinking in been with partner 12yrs now,had tn for 16yrs and my mother still tells me to put a hot water bottle on it,so yes give them that quick 5mins of sharp mind splitting disableingly uncontrolable pain and they might have some idea,but im currently going through a bad bout at the moment ask the question in about two months when hopfully painfree and you might get differant reply!!
No Donna, I don't think it is, because most people have either never heard of it or just don't seem to understand the excrutiating levels of pain it inflicts!!. Over here, most A&E doctors & nurses don't even know what it is! I've even had what I call a few "curious Freds"...mostly med. students &/or nurses who will "look in" on you, to see how you're doing. It's good that they want to learn, but don't they understand that when you're in the middle of a TN crisis, talking hurts!? The sceptics are the worst tho'... sometimes I really wish I had a magic wand that could make them experience just one bad turn...see how they survive it & how they feel afterwards...see how many nasty/sarcastic/patronising comments they feel up to making after that, lol so...
no, it's not mean, whilst I would never wish this on anyone, we all just get a bit frustrated at times! :-)
I use my laptop on notepad to "talk" to my hubby & kids when I am in the middle of an attack, LOL!
Deanne1407 said:
No Donna, I don't think it is, because most people have either never heard of it or just don't seem to understand the excrutiating levels of pain it inflicts!!. Over here, most A&E doctors & nurses don't even know what it is! I've even had what I call a few "curious Freds"...mostly med. students &/or nurses who will "look in" on you, to see how you're doing. It's good that they want to learn, but don't they understand that when you're in the middle of a TN crisis, talking hurts!? The sceptics are the worst tho'... sometimes I really wish I had a magic wand that could make them experience just one bad turn...see how they survive it & how they feel afterwards...see how many nasty/sarcastic/patronising comments they feel up to making after that, lol so...
no, it's not mean, whilst I would never wish this on anyone, we all just get a bit frustrated at times! :-)