My sensitivity to wind is off and on. I have always been super attached to having my fan going at night to go to sleep. Recently I’ve HAD to get up and turn it off. It’s really been awful since my dogs make it so warm in my bed. I’m learning to adapt as this stupid TN pops up new and unusual pains and sensitivities.
Yes, I have noticed there is no rhyme or reason to anything with TN.
Unpredictable...some generalalities, but you just never know.
Latley for me it is even the vibration of clocks ticking. Such a small thing seems so large when it irritates the nerves,
My husband just looks at me with empathy then I get the funny look - like really!?
beachwalkmm
Yes, really…we never know how much the world vibrates until it literally gets on our nerves!
My across the street neighbor was cleaning his boat today and clanging things around really loudly and playing music with loud bass music. Normally I would be happy for him since lake activities of any kind are my thing, but today that bass music was just a repetitive hammer going off. I wanted to go asking him to stop but I couldn’t get out of bed. He’s a nurse anesthetist and he would have totally understood. At least it didn’t last too long. I feel like I’ve become old and crotchety at 32. I’m having gamma knife the day before my 33rd birthday. Lets hope it’s an awesome birthday present!!
Hi there, you are so totally right! It's so easy to just spend your time, well, just waiting for the next burst of pain to come along. So this is what I'm going to let myself look forward to:
Going bowling with my pals
Going to my best friend's wedding at the end of May (Indian wedding style so I get to dress up all nice and feel good about myself)
Taking my camera and going to some place with a gorgeous view just take some great pictures
Eating my fave burger with fries (because I can eat and not just swallow porridge)
Take salsa lessons
Lose weight (the burger is a treat before I get back to the gym!)
I hear you, it’s so hard to explain to someone: “your sound is LIVING hell in my body” and not come off as a complete party-pooper…or worse.
Forgot to say I really hope you get that awesome birthday present.
Has anyone talked to you about Botox?
That’s great Emil2y. Make the most of all those fun things…well, losing weight not so fun in the beginning but I can be once the results come rolling in.
emil2y said:
Hi there, you are so totally right! It’s so easy to just spend your time, well, just waiting for the next burst of pain to come along. So this is what I’m going to let myself look forward to:
Going bowling with my pals
Going to my best friend’s wedding at the end of May (Indian wedding style so I get to dress up all nice and feel good about myself)
Taking my camera and going to some place with a gorgeous view just take some great pictures
Eating my fave burger with fries (because I can eat and not just swallow porridge)
Take salsa lessons
Lose weight (the burger is a treat before I get back to the gym!)
I’ve spoken with my neuro about Botox for my migraines but he wants to get the TN under control first. O
Bellalarke said:
Forgot to say I really hope you get that awesome birthday present.
Has anyone talked to you about Botox?
For sure. Just wondering. I hardly ever see it mentioned.
Love this. Yes make plans. I find overcoming my fear of things I naturally took for granted has been the biggest. Balance has been an issue so cross training classes were out. Had the Gamma and felt better so with my husband in tow went to the gym. He hung around the door and I would occasionally look for him when I felt a little off balance. Somewhere between the jogging around and squats and glorious music and people, beautiful people I started to weep. Doing squats and weeping. My husband opened the door as every one become concerned and asked if I was ok. All I could get out was, yes yes I’m just so happy. What joy! Make plans, little plans, big plans, all kinds of plans. Mind you I have had set backs but I have that day. And I will have more days, and more plans. Oh and I wept reading all these posts.
I need to make me a list!
I’m normally the Queen of lists, every year I make a vision board, which is so much fun!
My daughters started theirs last week, I never even thought about me/ mine.
Since my life took a detour in Nov. 2011, I have not made one, nor a list of things I’d like to do.
I think I stopped subconsciously for fear that the day would never come! That’s so not like me!
Thanks for the reminder…maybe I can start this while I’m lying around recovering …
((Hugs)), Mimi
Welcome aboard Lou and Mini! We’re not sure where we are going but it’s a fun ride.
Lou, I did a little happy dance when I read your post, “doing squats and weeping” while your husband stood in the wings, so moving. The personal is powerful.
Mimi, yes yes yes, make a list. Share something with us. It’s wonderful to hear that you are thinking that way and that now that the surgery is behind you recovery can start to edge out that fear.
I want to share a story of connection and hopefulness here.
Last week was really bad for me. I had bad vision problems and my sodium and blood sugar and hemoglobin plummeted. I had to ditch the Trileptal pronto. So many trips off the island and I was seriously worried about my ability to drive. A friend realized that my situation was a bit dicey so she took me on Friday and also talked me into going to dinner at her friends place and to play a bit of bridge for the evening. I hardly ever go out but also couldn’t face another night of misery alone so I got dressed up, put on make up,went to town, got my blood tests, and went to this beautiful acreage in the valley. I downed a couple of extra tramacet determined to have some fun. They were drinking Martinis so nobody noticed and it was a slow and friendly game. I could hardly see the cards let alone bid or play out a hand but everyone was was willing to say, " no, you’re on the board," or “you’re in your hand.” Honestly, totally surrendered and more or less played by “Zen” and it was fun. Near the end of the evening my host said, “you’re wearing two hats”. So I told them a little of what was going on for me and then something twigged and the hostess said, “our friend B. had something like that. She was always wearing hats and bundled up even when it was warm and then she would hardly come out at all and the meds she was taking made her wretched and dopey. But the she had surgery in Vancouver last summer and she’s right back to normal”.
Bingo! I just about leapt from my skin. So they got they got her to contact me and today we had had a long chat. Her neurosurgeon is the the one I am waiting to see. She said he has a 90% success rate and is at the top of his game and even if he can’t operate, he can help people. She also had some great suggestions for me to advocate for myself and get his attention.
And the other thing, Mimi, she also said that there are only two neurosurgeons in western Canada who are tops at this. The other is Dr. Kaufmann.
Even though its been a stellar pain day for me, it’s also been a stellar opening into the world. So the other thing I want to add to the “something to look forward too” is the whole idea of quirky connections, and who might just be around the corner, willing to help us on our way. Who we might meet on this river of pain. Lots of wonderful people. Yay!
Peace and Happiness
Bellalarke
Thanks just great news. Thanks for the update.
Also explanations about the incision, etc.
Yay Good Times…
Fantastic Shindig! I was thinking of you! My missing skull piece was replaced with an acrylic one, no plate, mesh or whatever. Looking forward to when my plugged ear hearing issue gets better, driving me nuts! But if that’s the worst of it, I’ll gladly suffer through it! ; )
Bella, the universe works in mysterious ways…connection is everywhere! So glad you were able to connect and be reassured of a choice you are leaning towards by someone who has walked that path. I too was fortunate to have that opportunity months prior to my surgery. I truly felt that things were lining up to reassure me that I was on the right path.
There is still a leap of faith involved but I have to say there are times we just need to jump in with both feet! Your doc and mine are highly regarded in their fields and are known for their passion and knowledge of TN. We are very lucky.
Take care of you Bella! xo
Hi
My is "Edster" I just want to say hang in there and continue to try and find solutions for this painful situation. I was able to recently abandon Kaiser and found a Doctor who ordered an MRI/MRA and they found the ventrical loop that is causeing my pain...I will be having surgery soon. This took 4 long years
I was luck, I was diagnosed and in the surgeons office in 6 months. Shindig, your outcome has been better than mine though, so maybe getting there quickly isn’t everything. I could have had the same outcome no matter what though, you never know.
I like the way you put that into perspective - it could be my new motto' - LOL or our new "motto' ;)
I enjoyed reading about you above, you have a very interesting background...and talents.
I sure wish there was an easy TN fix for us all.
I have been forced to work with it, missing a lot of work and the worry of loosing my job. Working while having bad TN days just amplifies the pain, but I know I can usually get through it if I have to..but it sucks.
Then I rush home to just have a quite dark place to hide and call my own.
I have turned down many vacations and fun functions....but try to do as much as I can even in pain.
I have a hard time functioning on all the meds they give me, so try to limit those as much as I can....or I can't drive.
My symtoms are always with me since 2002, but at times amplify greatly...those are the hard times.
Not as bad as the first few years....but still with me. The past 2 weeks were bad ones, that is when I found this group in conitinued search of maybe something new.
Right now as beautful as the windchimes sound, I am going to have to go remove them for awhile...it is the vibration once again.
Hope you have a beautiful Spring....and don't let TN take the spark out of you. Keep your spirit strong!
Bellalarke said:
Yes, really...we never know how much the world vibrates until it literally gets on our nerves!
I’m officially adding that I never want to stay in a hospital room again. 3 separate overnights in one year is too many for me!!
No doubt! How was the ride home?
HCal said:
I’m officially adding that I never want to stay in a hospital room again. 3 separate overnights in one year is too many for me!!