Trying to figure it all out

I have gotten some good tips on this site and some good information too. Be patient with me as I still am learning to navigate! I looked up some new doctors today. I don't like my current neurologist ( actually I think he is quite unintelligent), and found one that specializes in neurology, psychiatry, AND pain management. I will be calling him tomorrow. I also found a promising new neurosurgeon and will be contacting him tomorrow as well; along with the pain clinic in my town. Ive been seeing my family doctor whom I love since all this happened, on a regular basis. Unfortunately, my current neurologist thinks this is parasthesia which is completely a joke.

Someone asked if I have support through all of this. Yes. Lew is my best friend and is constantly here for me. We were in a relationship before, which didnt work out so well and that ended ( rather abruptly and leaving me hanging) after eight years, and three kids ( they arent his); and two are disabled- one fully and requires 24/7 care. When all this came down with me, Lew ended up right back by my side. I also have my cousin Tina and my Mother. I do believe however that Lew is the only one that really understands my pain. He took care of me through six years of trigeminal neuralgia and I feel so guilty that this happened to me. My mother, god bless her heart really does try to be there for me- but she surely does not understand what I am going through. She can be pushy, overbearing, controlling and all things a mother shouldn't be. It would be nice if just once she would hold me or hug me and tell me that things are going to be ok- but she doesn't. She doesnt understand how I didn't have pain and now all the sudden I do. She also thinks I'm an addicted drug user because I take vicodin. I HAVE TO in conjunction with my neurontin and I really dont care what she thinks. If she cannot be more supportive, Mother or not- I will cut her out of my life.

We were thinking today as to when the pain started. I was in a relationship that ended in November as I found out he was cheating on me all through the brain surgery, stroke, etc. I remember saying to him at the end of November right before I found out everything : "Tony, I can't believe this, but my mouth hurts". I remember vaguely through the use of gabapentin and vicodin also saying " I can't text tonight, my mouth still hurts". So I do believe this SLOWLY came on around the end of November and just built up.

It didn't give me a WHAM "I'm here" type of day to remember forever- it just snuck up on me, built up and built up more and just one day it did not leave.

The ice and heat and vicodin and gabapentin is my only relief. My face gets SO tight that I do alot of exercises for it and will start more this week in physical therapy.

I want to dabble in the mirror therapy and will be trying that. Mom and I went shopping today for mirrors and believe it or not, this store HAD NONE except the huge ones. I was out of energy but will try Walmart maybe tomorrow. I want to get that started asap.

Im still waiting on my final determination from SSI. A cerebullar stroke is "on the list" of things generally approved for. However, in all cases and in every state- they wait three months from the date of the stroke and then review your files. You HAVE to have either a speech impidement ( I now speak British- I would call that an impediment) OR ataxia or gross movement disorders in TWO extremities. I have BOTH of those.

I filed in October on the 28th and January 1st they started reviewing my records. They called me on that day to tell me what records they had and I had to sock it to them because they didnt have my family docs records, my neurosurgeon records, OR my therapy records. Duh- pretty much they only had my neurologists records. I CLEARLY gave them all the info they needed and all the doctors info, they just didnt gather the records. Did I mention our system is a bit messed up? If they deny me, I am appealing pronto with an attorney. I am a paralegal ( well was) so I took it on myself this time, but not anymore if they deny me.

I believe in alternative medicine and always have. My goal is to get out of this pain but for now, I will remain on these pain meds. I know some of you probably just rolled your eyes and thought "Good luck with that getting out of pain" but I am trying to stay super positive. I believe the brain can teach itself anything.

Every night, I use a type of meditation wherein I concentrate not on my pain, but instead it being put out like through a fire hose with my nerves on fire. This really helps me.

At this point, I would try anything. My tongue is still waking up and the pain is almost gone ( even in the morning with no meds in me) and my chin pain has diminished. I just have to concentrate on those darned right teeth and gums! I am hoping a nerve block for now will help. I also want to try hyperbaric oxygen.

I will write more later. Sorry for the typos but Im out of energy and not gonna fix em. LOL

You are certainly on the right track. Parents do not always understand. If only another board member could hear you. Her mother is the same. I wish I had half of your fight. What is mirror Therapy. If you are taking neurontin and percoset, you are certainly not an addict. Besides this is what the meds are for. I have 100 mg duragesic patch and i feel no guilt. Our parents generation does not understand and it is a shame, but the guilt is not ours. I only know of rehab centers in NY or Westchester. Contact me if I can help in any way.

OHH ...and I just read your blog ! As Elaine asks below -- what is Mirror therapy? Is there anything on this site about it? I suppose I could google it..

It is so brave of you to not take any other meds than the Gabapentin. I'm interested to know what ends up working for you. I've been on Trileptal for so long now... I started taking Milk Thistle and Dandelion root to keep my liver enzymes down after they shot through the roof last fall. My MVD didn't work, and my pain is the same. The episode I'm in right now has been going on for awhile, and just like they say, everytime the come, the get longer and more painful! ugh..

I'm sorry that you have to endure your mom not understanding.. It seems as though you have so much stress in your life, you must be such a strong woman !! Speaking of which, have you read the stress/anxiety thread yet?

Also, I'm going to see a pain management doctor next week. I'm hoping he can give me something to help me with the pain. guess we'll see what he says !

Good luck! And if you don't mind keeping me (us) posted on your alternative methods, I'll definitely read them!

hmm, I wonder if there is a thread.. There's gotta be...

going to look now.......


Hi guys. Mirror therapy is this therapy a woman says cured her husband of anethesia dolorosa. I can't get the mechanics of it down and looked silly in front of my mirror, so Lew is learning how to do it for me. Here is a link, I hope this link works here.

Pam, I am so sorry that your MVD failed too! I wish nothing but health and peace to all of us, but I know we probably all want to run full speed at a wall and just hit our faces off it until it falls off. HAHA.

Thank you Elaine for understanding about my mom. Don't get me wrong- I certainly love her and if I need advice she just always knows what to say. But its the UNsolicited advice that just really bothers me. I don't want to hurt my mom but I have half a notion to look at her and scream "stop parenting me, I am 35 for god's sakes- no wonder I don't know how to stand on my own two feet quite yet!"

She's one of those moms ...... calls my cell phone, then my home phone, then my friends phones if she can't find me! I'm the "baby" of the girls she had, but really she has to quit!

Well, I think I have to get ready for therapy - I have to check the time AND date, it may be tomorrow LOL. Thank you all for your support, it means so much.

Audarah, please keep up posted on how the mirror therapy goes. I find it interesting because it has been so successful for people with ghost pain in lost limbs.

Just fyi, I fully read the blog and she said do not try to do it by yourself, and that if you do, it could ruin the possibility of it working when someone else does it for you.

I don't know that it's a cure, but I can't see how it can hurt to try. Good luck.

Crud! I didnt read that. I did try it on myself, but only once. I have ordered some DMSO and when it gets here, hope to do some mirror therapy with it - but with my friend doing it to me. Anything to get out of pain

You sound much improved. You are doing a great job. you really sound great.

i know it's an old post, but so what, I read some academic article two years ago about mirror therapy used for phantom pain, or more for the correction of the perception of the missing limb...I found it very interesting