Don't you just hate people with perfect memory, it's not fair
Leonie said:
I read on this site that the Britts have a promising drug at stage 2, it specifically targets TN and may be available mid 2015. I'll get it legally or illegally
RueAnn said:
I'd write something I've done- odd or silly or strange, but I truly can't seem to remember day to day. My husband has an encyclopedic memory and will remind of something I did that was goofy, out of character or what not and initially I thought he was pulling my leg. Apparently not. It's disturbing and funny all at once. Do I have a different persona that takes over when the zombie meds hit my brain? Perhaps that's when I stop being overly polite, agreeable, non-confrontational and let loose with a stream of zombie med enhanced unveiling of how I really feel about the medical system that I have to fight with to get any care from. I wish I could remind myself to write it down. The past 3 years have been surreal, painful, awful and amazing. I'm sure there's some good blog posts or maybe even an e-book that could be written about how my life has been flipped upside down due to the pain of Geniculate Neuralgia. Maybe my memories will come flooding back after the next brain surgery on Sept. 24. That or maybe I'll end up with a super-brain! It helps to look forward to something so I don't back away in fear of the surgery that was so awful last year. Next month it will be done by the best of the best. I try to remember that when I think about hiding in bed and never emerging for another surgery that has a 5% chance of death or other adverse symptoms.
You're lucky, I have TN in all 6 branches, the multiple surgeries would kill me. My only choice would be Gamma knife if the medication stopped working. Many people have good results but some don't and it can make the pain worse
My recent experience is by lowering the Tegretol due to LYRICA, memories are coming back and I can now remember clearly events of 20 years ago ! I still have trouble remembering simple words so as I speak, my brain searches for a similar word to replace the word I wanted to use, It's all quite seamless and listeners don't detect how fast my brain is working, it really surprises me !
Leonie said:
Don't you just hate people with perfect memory, it's not fair
Leonie said:
I read on this site that the Britts have a promising drug at stage 2, it specifically targets TN and may be available mid 2015. I'll get it legally or illegally
RueAnn said:
I'd write something I've done- odd or silly or strange, but I truly can't seem to remember day to day. My husband has an encyclopedic memory and will remind of something I did that was goofy, out of character or what not and initially I thought he was pulling my leg. Apparently not. It's disturbing and funny all at once. Do I have a different persona that takes over when the zombie meds hit my brain? Perhaps that's when I stop being overly polite, agreeable, non-confrontational and let loose with a stream of zombie med enhanced unveiling of how I really feel about the medical system that I have to fight with to get any care from. I wish I could remind myself to write it down. The past 3 years have been surreal, painful, awful and amazing. I'm sure there's some good blog posts or maybe even an e-book that could be written about how my life has been flipped upside down due to the pain of Geniculate Neuralgia. Maybe my memories will come flooding back after the next brain surgery on Sept. 24. That or maybe I'll end up with a super-brain! It helps to look forward to something so I don't back away in fear of the surgery that was so awful last year. Next month it will be done by the best of the best. I try to remember that when I think about hiding in bed and never emerging for another surgery that has a 5% chance of death or other adverse symptoms.
Thank you all for your positive messages! I had been feeling quite anxious as I have my next brain surgery coming up at the end of September, but I don't have near the amount I need to pay for everything - not including my $20,000 portion of the bill that I will pay for a long, long time. I am incredibly grateful to the many kind people who have donated to a fundraiser for my brain surgery- friends I know are having as hard of a time if not harder than my family and I am. Some days are very hard- the days both my husband and I hurt so badly we can barely walk- his is a long standing spinal injury, and mine is mild cerebral palsy and GN. We have two young daughters - one is 3 - so for her entire life mama has hurt. That is who mama is. It's incredibly frightening and overwhelming. Thank you all for reminding me I am not alone, and that letting my fear and pain get the better of me is not going to lead to anything helpful- for myself or others. I appreciate the reminder very much!
I locked the keys in my car with it running. I didn't realize it and had a haircut. Came out, realized the keys locked in car but still did not know motor was running. My dear husband sent someone with his key. She realized the motor was running. He never knows what I am going to do next, heck, I don't know what I'm going to do next. I have burned numerous pots and pans so badly they had to be thrown away. I told him I had Drs. appt. on the wrong day or at the wrong time. I forget my bank pin number when I try to buy groceries. I can't recall family member's names. I forget I have clothes in the washer, so they sour. I put valuables in a safe place, and can't remember where I put them. I just laugh about things, because being on drugs is better than terrible pain.
Sunshine. As long as you can laugh about these things it is all good. I too have forgotten PIN numbers and laundry. What really as the old saying goes "what really frosts my cake " is forgetting something only a few minutes after I was asked or said I was going to do. My husband says “really!” I say “yup”. And he just shakes his head.
At this moment I am looking after my granddaughter and she keeps me very busy so I am focusing my brain out to keep up with her as she is very very active and likes to be busy with everything. I did not get to bed till 2 last night due to pain and she and the dog had me up at 7. Here it is 10:30 and I am ready for a nap.
I get tired of forgetting words. I have to stop midsentence because I can't remember the word for simple things like book.
I once waited behind someone in line to talk to my boss. I waited 10 minutes and by the time I got to her door I had no idea what I was going to talk about so I just left.
My boss was doing my yearly evaluation and asked what my strengths were. I just said "ummm" because all my brain would come up with was the work icecream! LOL I like icecream and I guess I'm good at eating it but I don't think that's a job skill! Hahaha
Oh gosh- I laughed out loud at the ice cream thought you had! I often forget words as I'm talking to people, I completely forget how to pronounce words that I've used without issue thousands of times before! Thanks for sharing you rice crem thought- it made me smile when I've been focusing too much on my pain and sense of helplessness. Have a great weekend!
RueAnn
virginia girl said:
I get tired of forgetting words. I have to stop midsentence because I can't remember the word for simple things like book.
I once waited behind someone in line to talk to my boss. I waited 10 minutes and by the time I got to her door I had no idea what I was going to talk about so I just left.
My boss was doing my yearly evaluation and asked what my strengths were. I just said "ummm" because all my brain would come up with was the work icecream! LOL I like icecream and I guess I'm good at eating it but I don't think that's a job skill! Hahaha
I was sent to a psychiatrist, with the very outdated thought that I simply must be suffering from hysteria, as the doctors could not "see" anything wrong with me. That was the best thing that doc had ever done, as my psychiatrist lived through the hell of Trigeminal Neuralgia for many years before undergoing a successful MVD. As such he is one of the most compassionate, kind doctors I have on my team of specialists, and my appointments with him are the only ones I actually look forward to. He knows the pain, the helplessness one feels when navigating the healthcare system trying to get the correct diagnosis and medications and most importantly the importance of believing if someone tells you they are in horrific pain they are not automatically a drug seeker. I am so blessed to know a kindred soul who does all he can to make sure I can at least occasionally sleep through the pain.
Leonie said:
A neurologists book published last year in the US had a paragraph on TN, it suggested we need a psychiatrist, yet NO shrink has fixed TN anywhere in the world and without Tegretol, my only option is a bottle of nitrous, the Dentists' choice for suicide, you laugh yourself to sleep LOL LOL
They have no idea ! They should be shot for making such claims. Many times in the early stages, I had to drop to the floor and stop breathing and try to stop my pulse till it went away.
At the start I had 6 months on and 6 months off. My neurologist said that's the nature of the beast. Change of season brings a new period of pain.
I think my nerve is damaged by an artery and heals in 6 weeks, then damage occurs in a different spot and it also heals in 6 weeks, this is the only thing that makes sense !
Chippy said:
This is too funny. If we couldn't laugh about this we would cry. I probably couldn't find the Kleenex or why I wanted one.
We all do either a high dose or take different meds and here is the kicker I once saw a doctor who said that because I was on 1 mg of Lorazepam to help me sleep (keeps The Beast at bay) that I was an addict. He should be in our shoes for a while to know about pain and pills. PS. He no longer is a member of my group of docs. Now to me that is something funny that I will not forget, short of what the heck was I saying. Oh yeah we should keep a daily log of what we remembered that we forgot. Oops mouth is running over. Have a great day tomorrow and keep posting the funnies Chippy
Yeh… Chippy. That doc that said you were an addict because of the lorazepam. .you should have asked him…what are you supposed to do??? Live with the pain!!! I don’t think soooo. .that just sticks in my craw when I hear that kinda stuff…aand that IS what I DID say to my doctor’s nurse at one point early on…to get my point across, (that I was in severe pain) and it worked…they started listening. I haven’t had any trouble since then …lol
I forget entire words as well however for me the most embarrasing moments are when I want to say something and a completly different word comes out of my mouth. The other night I was feeling cold and said to my husband. " Just a second I will get my power plug" and ment cardigan! At work I wanted to say "According to our last analysis" and said "According to our last pillowcase"! Really embarassig. And believe me there is absolutly no similarity between analysis and pillowcase in my native language either.
You guys are cracking me up because I've done the same and when I make such mistakes I tell my listener that I'm developing a new language with new words. Today I spent an hour trying to remember a simple word and I failed to recall it. It's so frustrating
Deanna said:
I forget entire words as well however for me the most embarrasing moments are when I want to say something and a completly different word comes out of my mouth. The other night I was feeling cold and said to my husband. " Just a second I will get my power plug" and ment cardigan! At work I wanted to say "According to our last analysis" and said "According to our last pillowcase"! Really embarassig. And believe me there is absolutly no similarity between analysis and pillowcase in my native language either.
Min. Glad you had similar probs with doctor. Idiot doc I suppose was trying to be kind in his own way (he was a gruff grouchy guy) told me he had been on lorazepam. And had a hard time getting off it. He must have been doing a large dose. At that time I had overheard him with another patient and he did not give her a hard time as he was asking her how much heroin or cocaine she was currently using and how much she had on her this particular day before he saw me. He was nice to her in his own gruff way and then he comes to me and berates me for one lousy lorazepam. Glad he is gone from my group of docs as he was not a nice man. I now have others who are learning more or are taking a better interest inTN. The main doc admitted he hadn’t had much experience with TN and whe I saw him last he had been researching and advising the other docs to look into TN as the other two I had seen were most helpful
Zombie, I like that haha. I would forget words a lot or forget what I was talking about WHILE talking. "words are hard" is what I would say for those moments.
Merrra. Words are hard. I had to get my iPad straighened out today. I had to explain to them that I had a hard time explaining or even grasping what they were saying. Then there is the remembering. Zombie is a super word. Funny at times though
Chippy
Thanks TKAL this is a great Topic way to lighten things up and a way to let us know we are not alone in the Zombie things we do I love it. Thank you so much I hope it keeps going on I too lose words and often stop in the middle of talking and not remember what I was talking about or watch a TV show and forget I watched it. I need to make a list of the things I need to do or I forget about them and then sometimes I forget to look at list. But the phone in the refrigerator was the craziest thing I have ever done at least I think. LOL Keep posting everyone
Thank goodness I am not crazy! I stop talking in the middle of sentences because I don't have a clue as to what I was going to say or even what the topic of conversation was! I always "Sorry, I am totally blanking. What were we talking about?" (I am surprised I remembered that!) I hate when I slur words and think I have said something correctly but I have said something really weird. Luckily my husband and mother both know this and respond in a positive way. (They are who I talk to the most.) I have actually stopped with something in my hand that I was going to do something with and couldn't figure out what I was doing with it in my hand. My favorite though was looking for my phone when I was talking on it. I know why I am a Walking Dead fan now, too. I can relate. :-)
I talk to myself to know where the pain is, I will get micro shocks all day but that's better than no pain and when you least expect it, THE BIG WHAMMY. I'm not suggesting others should do this but this is how I cope
Dana Nelson McCullah said:
Thank goodness I am not crazy! I stop talking in the middle of sentences because I don't have a clue as to what I was going to say or even what the topic of conversation was! I always "Sorry, I am totally blanking. What were we talking about?" (I am surprised I remembered that!) I hate when I slur words and think I have said something correctly but I have said something really weird. Luckily my husband and mother both know this and respond in a positive way. (They are who I talk to the most.) I have actually stopped with something in my hand that I was going to do something with and couldn't figure out what I was doing with it in my hand. My favorite though was looking for my phone when I was talking on it. I know why I am a Walking Dead fan now, too. I can relate. :-)
Hi leonie I do not talk to myself but I mostly Pray Oh God help me. But at other times I have few other choice phrases like Oh cr_ _ or Son of _____ or Damit Damit and stomp my feet a lot or bang my fist on my thigh when it is really bad and can not talk but out is public or around certain people I do not of the above do not want to upset the normal people LOL
KAT, I know someone who still will not believe TN is real and it's in the mind. If we are not missing an arrm or leg some peole can not SEE it, yet they stupidly accept other unseen pains like migraine and dementia ? Some people are dumb.
I also stamp my fist on a solid table after a SHOCK. I ''punched my face'' only once because it made the pain worse !
Here's a Pistorius joke from the net, ''I heard a noise while in bed last night so I jumped up and did all the usual things - checked the front door, checked the windows, shot my girlfriend five times, checked the back door and went back to sleep.''
IIth of Sept is Pistorius's judgement day, I'm hoping he gets 25 years
KATTHOMPSON4 said:
Hi leonie I do not talk to myself but I mostly Pray Oh God help me. But at other times I have few other choice phrases like Oh cr_ _ or Son of _____ or Damit Damit and stomp my feet a lot or bang my fist on my thigh when it is really bad and can not talk but out is public or around certain people I do not of the above do not want to upset the normal people LOL
