Miriam Frasers Trigeminal Neuralgia Story
Miriam Fraser's TN Journey
In March of 2002, a month before my 29th birthday, I started experiencing the pain of Trigeminal Neuralgia.
One day out of no where, while folding laundry I had this horrid electrical shock like pain across my face under my right eye, so intense I cried out loud in pain.This pain would occur over and over again with minimal breaks in between over the next few days. I had never felt such pain in my life.
I pride myself on my high pain threshold ..but with TN I had met my match!
I had never heard of TN, after a few days of random pain episodes I went to my doctor, he diagnosed me shortly thereafter and I started on Tegretol...A few months later, the other side of my face started with TN pain. I now had Bilateral TN. I was up to 1200 mg of Tegretol at one point but eventually after 8-9 months the TN pain was finally managed and I slowly started weaning off the meds....
I had an 8 year remission for my right side TN 1 and a 10 year remission on my left side TN2.
Fast forward to 2010, and over the course of two days I felt a dull pain in my right ear
( thought I was coming down with an ear infection). I remember lying in bed and the pain just intensified and was now spreading to my jaw, teeth, cheeks, mouth. I just knew the TN had returned... I had no idea it could come back, I thought it was a one time thing. I had gone so many years without an attack...
This time my triggers were drinking, talking, brushing teeth, eating, anything to do with my mouth! Frustrating!
Back on the Tegretol, my neurologist told me then, when TN returns it usually gets worse, I was a glass half full kind of girl and didn't believe it!
In November of 2011, I stopped working due to a sudden onset of Vertigo. Many tests ensued and eventually it was determined that the Vertigo was a side effect of my TN medication ( Tegretol)
My Neurologist's words were about to come true....
In April a few weeks shy of my 40th birthday, my TN 2 relapsed, the left side woke up again after a 10 year remission, with a vengeance!
Within a few weeks my medication doubled. I experienced a relatively calm summer, mostly dealing with Vertigo and adjusting to the meds. In September it relapsed again, this time no matter how many meds we added or how many times we increased the dosages, the pain didn't respond.
My TN was now med resistant and worsening....otherwise known as refractory TN.
This was the turning point, I started researching MVDs ( microvascular decompression surgery). I consulted with 2 neurosurgeons, one here in Edmonton, the other via telephone in Winnipeg. Both agreed to perform my surgery. Although it would have been way more convenient to have it here in Edmonton, I chose Dr. Kaufmann in Winnipeg, for his experience and passion. Throughout my years with TN no compressions were ever seen on any of my MRIs, EVER..... My Neurosurgeon wasn't very optimistic as my pain on this side was predominantly TN2 pain with only recent onset TN1. My right side TN1 remained quiet.
As I waited for a date for my MVD surgery, my pain continued to increase and worsen, I was on 3 high dose meds, Tegretol, Dilantin & Baclofen.
I couldn't do it anymore.....my pain on my left side consisted of a deep stabbing in my ear, constant pain along my jaw, under my left eye, along my nose and my lower left teeth felt like the nerves were exposed ALL the time. The electric shocks started coursing into my throat and into my cheek. My pain was escalating and increasing every day.
I don't really know how I survived those pain levels for those 7 months...
My MVD surgery took place on April 9th, 2013.
After a 3 hour surgery Dr. K visited with my husband and daughters and told them he had successfully decompressed 3 compressions on my trigeminal nerve.
Remember NO compressions were ever seen in MRIs over the course of 11 years....
I woke up TN pain free.
That being said, as I reduced my medications from 3 to 1, I knew the TN wasn't gone.
At 1200mg Tegretol I was pain free for 4 blessed months.
Although at the time of writing this ( 9 months post-mvd) I am on three medications again, trying to find control of the pain, I still consider my MVD successful!!
At least now I get a few hours pain free OR a few days with minimal pain, compared to non-stop horrid pain 24/7 prior to my MVD.
Unfortunately the meds combined at these doses make me sluggish, low energy, nauseated, off balance, unable to drive along with a myriad of other side effects.
I'm unable to return to work and the pain continues to break through every day. At 41 yrs old I am a prisoner in my home, isolated, lonely with little left to try. I've tried almost everything to find a balance. From diets, herbal/ holistic remedies, acupuncture, medications, vitamins, supplements chiropractor etc..The emotional side effects for myself as well as my family are ongoing as well.
FEAR of the pain plays a big role too.
My HOPE rests in the research studies currently being done, and the promises of the Facial Pain Research Foundation to find a cure within the next 10 years.
I want to "live" again, just existing isn't enough...
I'm very fortunate to have a loving supportive Husband, 2 beautiful daughters, my Mother and a group of friends who all hold the fractured pieces of me together.
The work of TNNME is so important and I'm so grateful for their tireless efforts to raise awareness.
Miriam Fraser
One day out of no where, while folding laundry I had this horrid electrical shock like pain across my face under my right eye, so intense I cried out loud in pain.This pain would occur over and over again with minimal breaks in between over the next few days. I had never felt such pain in my life.
I pride myself on my high pain threshold ..but with TN I had met my match!
I had never heard of TN, after a few days of random pain episodes I went to my doctor, he diagnosed me shortly thereafter and I started on Tegretol...A few months later, the other side of my face started with TN pain. I now had Bilateral TN. I was up to 1200 mg of Tegretol at one point but eventually after 8-9 months the TN pain was finally managed and I slowly started weaning off the meds....
I had an 8 year remission for my right side TN 1 and a 10 year remission on my left side TN2.
Fast forward to 2010, and over the course of two days I felt a dull pain in my right ear
( thought I was coming down with an ear infection). I remember lying in bed and the pain just intensified and was now spreading to my jaw, teeth, cheeks, mouth. I just knew the TN had returned... I had no idea it could come back, I thought it was a one time thing. I had gone so many years without an attack...
This time my triggers were drinking, talking, brushing teeth, eating, anything to do with my mouth! Frustrating!
Back on the Tegretol, my neurologist told me then, when TN returns it usually gets worse, I was a glass half full kind of girl and didn't believe it!
In November of 2011, I stopped working due to a sudden onset of Vertigo. Many tests ensued and eventually it was determined that the Vertigo was a side effect of my TN medication ( Tegretol)
My Neurologist's words were about to come true....
In April a few weeks shy of my 40th birthday, my TN 2 relapsed, the left side woke up again after a 10 year remission, with a vengeance!
Within a few weeks my medication doubled. I experienced a relatively calm summer, mostly dealing with Vertigo and adjusting to the meds. In September it relapsed again, this time no matter how many meds we added or how many times we increased the dosages, the pain didn't respond.
My TN was now med resistant and worsening....otherwise known as refractory TN.
This was the turning point, I started researching MVDs ( microvascular decompression surgery). I consulted with 2 neurosurgeons, one here in Edmonton, the other via telephone in Winnipeg. Both agreed to perform my surgery. Although it would have been way more convenient to have it here in Edmonton, I chose Dr. Kaufmann in Winnipeg, for his experience and passion. Throughout my years with TN no compressions were ever seen on any of my MRIs, EVER..... My Neurosurgeon wasn't very optimistic as my pain on this side was predominantly TN2 pain with only recent onset TN1. My right side TN1 remained quiet.
As I waited for a date for my MVD surgery, my pain continued to increase and worsen, I was on 3 high dose meds, Tegretol, Dilantin & Baclofen.
I couldn't do it anymore.....my pain on my left side consisted of a deep stabbing in my ear, constant pain along my jaw, under my left eye, along my nose and my lower left teeth felt like the nerves were exposed ALL the time. The electric shocks started coursing into my throat and into my cheek. My pain was escalating and increasing every day.
I don't really know how I survived those pain levels for those 7 months...
My MVD surgery took place on April 9th, 2013.
After a 3 hour surgery Dr. K visited with my husband and daughters and told them he had successfully decompressed 3 compressions on my trigeminal nerve.
Remember NO compressions were ever seen in MRIs over the course of 11 years....
I woke up TN pain free.
That being said, as I reduced my medications from 3 to 1, I knew the TN wasn't gone.
At 1200mg Tegretol I was pain free for 4 blessed months.
Although at the time of writing this ( 9 months post-mvd) I am on three medications again, trying to find control of the pain, I still consider my MVD successful!!
At least now I get a few hours pain free OR a few days with minimal pain, compared to non-stop horrid pain 24/7 prior to my MVD.
Unfortunately the meds combined at these doses make me sluggish, low energy, nauseated, off balance, unable to drive along with a myriad of other side effects.
I'm unable to return to work and the pain continues to break through every day. At 41 yrs old I am a prisoner in my home, isolated, lonely with little left to try. I've tried almost everything to find a balance. From diets, herbal/ holistic remedies, acupuncture, medications, vitamins, supplements chiropractor etc..The emotional side effects for myself as well as my family are ongoing as well.
FEAR of the pain plays a big role too.
My HOPE rests in the research studies currently being done, and the promises of the Facial Pain Research Foundation to find a cure within the next 10 years.
I want to "live" again, just existing isn't enough...
I'm very fortunate to have a loving supportive Husband, 2 beautiful daughters, my Mother and a group of friends who all hold the fractured pieces of me together.
The work of TNNME is so important and I'm so grateful for their tireless efforts to raise awareness.
Miriam Fraser