We are patients living with Trigeminal Neuralgia, here for your support.

Gina Berg Female Denver, CO United States: Share on Facebook

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MVD's

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For TN Patients in Their…

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TN and Physical Activity
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Can anyone give insight to working out with TN? I was very active before I was diagnosed with this 6 months ago, I ran 1/2 marathons, I was at the gym all the time and was always hiking or biking or…Continue

Tags: running, activity, physical, out, working

Started this discussion. Last reply by Gina Berg Jun 13, 2010.

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Gina Berg and Linda Kindle are now friends Apr 11, 2011

can't believe it's been 6 months since my MVD and I'm running a 1/2 marathon this weekend! I feel great, surgery was the best decision ever!

Status posted by Gina Berg Mar 22, 2011

Amy S. replied to Gina Berg's discussion 'With our odds, we should be winning the lottery.... so how do we manage to live another 60 years?' in the group For TN Patients in Their 20s

Gina and all, I know exactly how you feel. The past four years of my life have been absolute hell. I was diagnosed in the first semester of my freshman year in college so my complete college experience was impacted by this stupid disorder. I was on…

Mar 17, 2011

Alisa Pochodzay replied to Gina Berg's discussion 'With our odds, we should be winning the lottery.... so how do we manage to live another 60 years?' in the group For TN Patients in Their 20s

I have recently had this TN (Typical and Atypical) monster dropped in my lap, and where as most others have had Careers to handle along with this monster I ‘m a housewife (age 25). This dose not mean I don’t have my own set of issues,…

Dec 12, 2010

john quill replied to Gina Berg's discussion 'With our odds, we should be winning the lottery.... so how do we manage to live another 60 years?' in the group For TN Patients in Their 20s

Hey Gina, We don't have to "manage to live" another sixty years with this illness. We just need to survive TODAY. As time goes on, even without a "cure" for the severe pain, the one thing this illness does really well, if…

Nov 16, 2010

Lisa commented on Gina Berg's blog post 'The Most Important Things I've learned from TN and my MVD.'

great to read. glad to hear that you are pain free and it gives me hope for my surgery.

Oct 20, 2010

just went to the gym for the first time in a year without any pain! Less than 3 weeks out from my MVD but recovering quickly and feel great!

Status posted by Gina Berg Oct 12, 2010

Bob Snodgrass commented on Gina Berg's blog post 'The Most Important Things I've learned from TN and my MVD.'

I am humbled...Thank you, bob

Oct 6, 2010

Shannon B commented on Gina Berg's blog post 'The Most Important Things I've learned from TN and my MVD.'

Thanks so much for posting this up. Hope you continue to be pain free

Oct 6, 2010

The Most Important Things I've learned from TN and my MVD.

This is my story about living with TN, choosing to get microvascular decompression and my surgery experiences. I could write a book on the experience but this is a shortened version. I’ve started with the most important things I’ve learned from my experience to help others learn from what I’ve gone through. If you have specific questions regarding my experiences, please contact me and I’m happy to discuss them further with you.　The most important things I have learned from my…See More

Blog post by Gina Berg Oct 5, 2010

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Gina Berg replied to Jean Mikhail's discussion 'oxcarbmazapine'

I tried neorontin, trileptal and topamax. The side effects of neurontin were too much to handle and it still didn't take away all my pain. Most recently I've been on trileptal and topamax. This also helped but didn't take all my…

Sep 27, 2010

Gina Berg updated their profile Sep 27, 2010

is recovering quickly from MVD on 9/22. I'm working on a blog but happy to share my experience & answer questions anyone has! I feel great!

Status posted by Gina Berg Sep 27, 2010

Gina Berg left a comment for Vic Maidhof

Hi Vic, Sorry your treatments have not been successful. I'm happy to share my experience with you. I'm still feeling great. Doc found more than the MRI showed when he opened me up. My recovery is going really fast as well. I expect to be…

Sep 27, 2010

Gina Berg and Janet L Ditslear are now friends Sep 27, 2010

Gina Berg commented on Kerry's group 'MVD's'

Hi guys - I just got home from the hospital yesterday and had MVD on the 22nd. I feel great so far and haven't had any electrical shocks. I will update more later. I'm so glad I went through with the surgery! I feel like I've been…

Sep 25, 2010

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What treatments have you undergone (or will undergo)? With what success?: MVD on September 22, 2010. Pain management with medications until then.

Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?): After 9 long months of suffering with TN (which I know isn't much compared to many folks on here) - my family, friends, doctors and I decided it was the right time for me to get MVD. On September 22, 2010 I got my MVD. I have not had any electrical shocks or pain since waking up from the surgery. I feel great!

I will share more of my story as I recover.

The beginning:
On Friday afternoon (Dec. 11) I noticed a pain in my eye/cheek area. I kept joking with my co-workers that it felt like I had been punched in the eye. I didn't think much of it though because I'm a clumsy person and thought I could of bumped it without noticing it. The ironic part is that I was at my doctor that morning and didn't mention it.

Over the weekend the pain escalated. It went from feeling like I had been punched in the face to feeling like I had been beaten in the face with a baseball bat. The tingling sensations began. This was all just on my left side. My face was really tight. On Monday, I knew something was wrong but I didn't know whether to go to the doctor, dentist or psychologist - I thought I was going crazy. I went back to my doctor and she put me on on steroids but given my past neurological history was concerned and referred me to a neurologist. Over the next week the pain intensified so bad I couldn't eat, talk or smile. I lost all my energy and didn't want to get out of bed. The pain was so bad I wanted to crawl into a hole and die. Everything was a struggle but I put on my strong face and tried my best to fight each day. I lived on soup from a straw. When I went outside and the cold or wind would hit it, it would set my face on fire. If you touched it or I washed my face it felt like a million needle pricks going into it.

I honestly felt like a crazy person explaining it to people. No one has ever heard of it. I hadn't either. I was just in so much pain I couldn't be my usual bubbly self. And with it being the holiday season, it was even more depressing because I wanted to be joyful and go holiday shopping but I didn't have it in me. Finally when I called my doc on Friday and told her the steroids weren't working she put me on Gabapentin which provided me with some relief and got me in for an MRI and neurologist appointment the very next Monday.

On Monday, December 21 I went for my MRI and to see the neurologist for results. Merry Christmas - I've been diagnosed with TN. The good news is that the MRI revealed an artery sitting on top of the nerve which the neurologist believes is the cause of it. The bad news is that there are still a lot of unknowns which I'm sure many of you are used to. I know I've learned to accept a lot of unknowns with my trail of neurological problems.

Nonetheless, I've had this about two weeks now. I've been on Gabepentin for about a week now. The medicine takes away the electrifying sensations and the crazy tingly, needle prickly, burning, shocking feelings but the aching/I've been punched in the face with a baseball bat feeling is always there. And I can definitely tell when the meds start to wear off. It's really draining. Life as I knew it is over. I'm beginning to accept this pain as normalcy but it sucks because I feel so confined and limited. I have to rethink everything I love to do which involves being outside. I just don't want to bring my loved ones down. I want to stay strong but it's hard.

Gina Berg's Blog

The Most Important Things I've learned from TN and my MVD.

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Posted on October 5, 2010 at 2:41pm — 3 Comments

Comment Wall (7 comments)

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At 6:34am on September 24, 2010, Janet L Ditslear said…: Praying for your recovery! Today is September 24th. Blessings, janet

At 10:36am on August 24, 2010, Sarah Hobbs said…: up to a chat?

At 4:51pm on August 17, 2010, Sarah Hobbs said…: Just saw your post about 8 months after diagnoses wanting to go ahead with the MVD. I caution you to do your homework well first. I understand wanting the pain to end, but everyone I know who rushed into the MVD did not have good results. My neurosurgeon refused to operate on me until all other options had totally failed. I am so grateful he did that! Kept me from making a decsion in haste. As it was had major complications and spent 16 days in the hospital, 6 of them in ICU with a lumbar drain in my lower back. I find a lot of neurosurgeons now days act like the MVD is nothing. I am glad to see you do not take it lightly.

As for rethinking the outdoor stuff can so relate. Always carried a small bad that had my meds in them if needed. Figure may have TN, but it was not going to have me.

Hang in there!
HUGS <3
Sarah

At 4:51pm on August 17, 2010, Natalie said…: Hi Gina,
You took all the words right out of my mouth. I have been offered MVD, had TN for nearly a year and I wonder whether I am being impulsive. I hate the meds and they have not done much for the pain, but the last week is the best I have had in nearly a year which is very unusual. I am scared to have MVD but I just want my life back too. Please, you are not unusual in what you are thinking. Nat xx

At 1:20pm on March 19, 2010, Kristi Boyer said…: Gina,
I know that I struggled with my doctors in the beginning. I had to go through three neurologists before I found one that would help me. I hope you are able to do the same. It took some time but once I did it, it was all worth it. It can get better. I know it doesn't seem like it while the pain is zapping but I will send some good wishes your way... Kristi

At 8:44am on December 30, 2009, Gina Berg said…: Thanks for all the encouragement everyone! Last week was tough with the holidays - especially being diagnosed 4 days before Christmas and having all my family 2000 miles away. Talk about a feeling of isolation. But my pity parties are over and I'm ready to fight this. I still wake up every morning with the same crappy feeling but I say screw it and move on - life is full of choices. I'd rather live my life in pain than live my life in fear and isolation. At least I'm living and doing the things I want to do! I even went ice skating the other day. The cold hurt like hell and I looked like the unibomber with a full face mask on to shield myself from the cold and the wind.... but I had fun, and in the end... that is all that matters. :)

At 2:11pm on December 23, 2009, Judy Broadworth said…: Welcome Gina....Your story sounds similar to mine however mine began 14 years ago and it took much longer to diagnose. Every case is vastly differend but I am now on a combination of meds that keep me relativly pain free and with minimal side effects. I am one of the fortunate ones and I wish that for you as well. You have found a wonderfully supportive place here with great people.
Judy