My doctor just started me on a slow release of Tegretol twice a day. It's still hurting but nothing like it was. I can actually think once in a while now! :) Thank you God!
I also take a slow release of tegretol and I am doing alot better - FINALLY
I thank God that he helped me find a Neurosurgeon who will do MVD this Wednesday and I'm looking forward to not having to take any meds for TN for a long time! The first Neuro I went to, wanted me to do Gamma Knife and after all I read about it, I don't think it's a good idea.
I just faxed my "package" of info to Johns Hopkins to start the process to determine if I am a candidate for MVD
When i had the MVD surgery at Johns Hopkins 6 years ago, it changed my life for the better. I wish I had the courage to go there in the beginning of this journey in 2002. It is so scary, in the beginning, when you realize how daunting this disorder can be. Praying for you guys to find relief soon!
Bump
I was allergic to the Tegretol so had to quit taking it. I had the gamma knife procedure which helped some. I was not a candidate for MVD because my kidneys were failing.
My biggest help was that after my kidney transplant the pain is not there everyday any longer. I hurt sometimes but it comes and goes. I don't wake up with it and it's usually gone by the time I go to bed now. Very happy! I'm hoping it will continue this way!!
I wish the best for the rest of you.
Wow…that IS a blessing!
just a note of encouragement for those still suffering. two years ago I thought my life was over… and this disease had taken it. as I ran through diagnosis after diagnosis, and eight different specialists, I was despairing of any hope. when I finally got a diagnosis and found this site, I printed off a note from someone who posted here. she had found relief, but only after many episode of screaming pain and wishing to die for months on end. I printed up that note and kept it on my desk for two years while I wandered around trying to find something that would help, & thinking I would just be better off dead. but finally, after many searches & many tries, I found some relief through a doctor who helped. the pain is not gone, but it is mostly manageable, compared to what it was before. so for all those of you who are wondering if things will ever get better, don’t give up hope! hang in there & keep up the fight. thank The Lord for this site!
This may sound strange, but I come from a family full of rail fans, and the fact I live here in Portland, Oregon, when it comes to this passion, is such a blessing. Most rail museums do not have operational steam locomotives due to the very high expense of keeping them running. Here in Portland we have two, and a third set to go back on the rails for the first time in 60 years.
My profile picture is of one of the two operational steam locomotives. She is the Southern Pacific Daylight 4449. She is the last of her model left in the world, and she is world famous. You really do not understand how beautiful she is, until she is steamed up, and moving.
I respect I may sound strange, but I am very blessed to be able to able to pare take of what is a unique hobby to the extent that I am.
I was just noticing a lot of the comments were referring to TN. For me being around the locomotives is a major distraction, and to be able to be distracted by a world famous locomotive is icing on the cake.
I could not have hoped in 2010… The year my journey to HELL started,
That by 2014, these blessings have slowly accumulated. So many starts and stops along the way…in PTSD mode and depression…
Now the sun shines in my direction!
I am grateful to have just gotten my kids both to past the teen years ages!
they lost their dad young… So I really need to start taking better of myself!
I am grateful i have unconditional love from five furry pets
I am grateful that my stroke last summer was teeny…still a challenge
Im grateful i have a hubby that makes sure we get to the ocean twice per year… Just doing nothing at the beach…or long beach walk
…till i get zen
Having my dream job , flexible and part time…waking up, knowing people are looking forward to my services, and feeling I’m making a difference.
Most of my family have passed, but my dad has given me unconditional love since i was born…51 years ago…when he was 19 and mom was 16. Im a daddy’s girl, and typing this reminds me that i need to see him for lunch, more than twice a month! Im grateful i can turn that around starting tomorrow!
And of course this site and THESE beautiful people … Lead me on the path of sharing to glean what i needed and when i needed…
I had a 1-2% twinge today and yesterday…i rarely speak of it, it rarely happens… If it ever gets worse… I know where i have a soft place to land!
((KC))
thanks for writing your post above, it gave me a big 'ol kick in the butt, lol just a nice reminder to get back to “gratitude” I am usually, but it’s been hard this past week.
Just wanted to say thanks for the reminder…hope the twinges are buh-bye!
(( hugs)) Mimi xx
I always feel so blessed hearing the sweet sound of the cardinals and (I think) chicadees in my backyard. There is a feeder that I try to keep well stocked and it keeps a lovely assortment of God's creatures enjoying my yard. Several years ago a gopher turtle decided to live under my patio and I have enjoyed watching his excursions sunning himself and eating my weeds. A couple of days ago he was parked near the birdfeeder and a squirrel was inches from him, looking like he could not figure out what that creature was. GT also ran off a cat from the feeder area, lol.
So although these past couple of weeks have been some of my most painful in years and I can see the possibility of losing my job, there are still wonderful blessings to distract.
I have a new foster dog who is keeping me entertained. He is a 6 lb. Pom-Chi and looks like a little red fox. When I put him in my lap as I am on the computer, he puts his paws out resting them on the desk like he wants to type, lol. This little guy has a lot of fear issues which I am trying to help him with.
Thats great… Love that puppy!
lol 6 lbs is light as a feather. My mom has a dog rescue and when I was visiting she had a Pom-Poo that was actually the cutest thing ever and he was light as a feather when he'd jump into/out of your lap.
I have 2 rescued mutts I pulled from the pound:
This is Riley, the rest of her litter was put to sleep, I took her because they called me before they put her down: 
This is my other mongrel Sam, both are girls, Sam and Riley.
shadow2 said:
I have a new foster dog who is keeping me entertained. He is a 6 lb. Pom-Chi and looks like a little red fox. When I put him in my lap as I am on the computer, he puts his paws out resting them on the desk like he wants to type, lol. This little guy has a lot of fear issues which I am trying to help him with.
OMG - SHINDIG -
they could be in commercials!!!
Or drill a hole in our head to let the evil out!
Kc Dancer Kc said:
this is good! Would have put leaches on our face -- ewwwwwww
Seriously, way too cute!!! Riley has the most beautiful face, soft peaceful eyes and Sam looks like she is a bright, quick one.
Kc Dancer Kc said:
OMG - SHINDIG -
they could be in commercials!!!