FIGHT FOR A CURE FRIDAY Featured Warrior: Fred Peterson by Cristina Marie
Fred is a 48 year old Neuralgia patient residing in the state of Connecticut with his wife, Margaret. Next year on Valentine's Day they will have been married for 30 years! They have two adult daughters ages 26 and 28. Fred has driven a concrete truck for 29 years. On February 25, 2014, at the age of 46, Fred was watching television with his wife. All of a sudden he began experiencing the worst pain he had felt in his life. It was on the right side of his face. "After about 2 hours, I couldn't take the pain anymore. I drove myself to the local hospital emergency room. They gave me some Morphine but it didn't even touch the pain! They concluded that it was a sinus infection and sent me home with antibiotics", said Fred. After a week of antibiotics, the pain had not gone away. Fred made an appointment with an ENT (ear,nose,throat) Specialist. Fred said, "He listened to me describe my pain. He said that he thought it was Trigeminal Neuralgia. He scheduled me for an MRI and referred me to a Neurologist." The MRI did not show any compression but did show blood vessels very close to the Trigeminal Nerve. that is when Fred started trying different medications.
He was officially diagnosed with TN2.
Fred is currently taking Lamotrigine but has tried several anti-seizure medications including Gabapentin. On October 6, 2014, almost 8 months from the official onset of pain, Fred had the Gamma Knife Procedure. "The first couple of months after, I was still experiencing flare ups. As the pain started to subside, i started getting a cobweb sensation on my face. It became a constant feeling and was very irritating. I guess it was better than being in pain though. It eventually lightened up and the feeling did go away. I stopped taking my medications and was pain free for about a year", he said.
In March of this year, Fred had a flare up that he had never wanted to feel again. It lasted for several hours. Ever since this flare up, he has been having what he describes as weird sensations on the right side of his face. "The sensations feel like the pain wants to come out but mostly it's just a weird feeling that is difficult to describe", said Fred. Every now and then he will get electric shock sensations but says, "They don't last long. I think the nerve is trying to heal." Fred told me that if the pain does come back he will be looking in to getting the MVD (Microvascular Decompression) Surgery. Fred has not been told what may have caused his Trigeminal Neuralgia. A question that so many times is left unanswered.
Fred describes his pain as being electrocuted. He has tremendous pressure. he says that it feels like the pain focuses on one or two teeth. "one night I was looking for a pair of pliers to pull my teeth out. I was hurting so bad! If I had found them, I am certain that I would have pulled them out." he said, "I know it would not have helped but at the time, I was in so much pain that I was willing to do anything to stop it!" Fred is happy that he had a remission for a year but is concerned that it is coming back.
"When i was first diagnosed, i spent a lot of time in bed, curled up, just waiting for the pain to end. I do not have any visible sign of TN like facial drooping or inflammation. The only visible sign I have are the tears in my eyes", he said, "I try not to focus on my condition. Now I try not to think of it as a life sentence. Whatever this thing throws at me, I will find a way to deal with it."
Fred says that his wife, Margaret is his biggest support system. "She will ask me what she can do to help. I always tell her there isn't really anything that she can do", He said. "I would like to try medical marijuana but because I have a CDL license, the Federal Government has to make it legal. Until then, I can not utilize it. I would be risking my job and that's not happening!" Fred and his wife both joined a support group, Trigeminal Neuralgia Eastern States. "We have gained a lot of good friends in this group", he says, "If you are able to join this group, I highly recommend it. We have learned a lot from the other members." Regardless, Fred recommends for any TN or Neuralgia patient to find a support group that will suit their needs.
Fred also says that he would tell a new patient to read, read, read! "n the beginning, i was on the internet every chance I got looking up information", he said. Fred really hope to see a cure in the future. He would also like for it to be easier on the patients who need to file disability.
I asked Fred's wife to join in on our conversation. "I remember when it first started. We had no clue what to do. Fred doesn't like to complain about anything but this was different. I think he suffered through a few episodes like going to the emergency room or looking for a tool to pull his teeth out. We actually had a fight with that one. He was in so much pain and I couldn't help him. Finally he went to his doctor who came up with the right answer and sent him to Yale. I remember looking the condition up and saying to him that there is no way he could have that. Well we were wrong and they confirmed what he had been told. He tried several medications to no avail. I felt so much guilt. I had put him through hell dealing with my issues and now we have this. I was very scared when he had the Gamma Knife Procedure done. I thank God that it did help him after awhile in addition to taking a medication.
Then we had some financial issues. I take so many medications myself that he stopped taking his. We would argue. He needed to take them no matter what. The pain started up again. As his wife, I am scared of where this goes. He is a strong man but I have spent many times just holding him while he is crying knowing that there is nothing else that I can do. At times just a slight touch to his face gets to him. My biggest fear is what the next step will be for him. I have read many of your articles and it amazes me that this really exists. I am sad for the young children who are going through this. They should just be what they are, children. I thank the support group for being there for us. Everyone makes me feel like family. I am so grateful that I was permitted to be a part of the support group. Fred and I are able to talk about things better now because I have a better understanding. He doesn't have to explain as much.
My wish besides a cure is for the world to know this condition exists. I want people to grasp the real pain it causes. So many people don't believe that it is out there. I love my husband so much and wish that there was more I could do to help."
Suzanne Martin, friend and Administrator for Trigeminal Neuralgia Eastern States said, "Fred and Margaret are fun, positive and active members in the group. Fred brings a good laugh from a male perspective to the group. Margaret brings the warm lighthearted side from this couple. I can only hope along with others that Fred has seen the worst of his Trigeminal Neuralgia so that he and Margaret can go on to enjoy many years to come."
Fred, we thank you for sharing your journey with us as we continue to Fight For A Cure! If you would like to learn more about Trigeminal Neuralgia and other facial pain disorders, please visit The Facial Pain Research Foundation on Facebook or at www.facingfacialpain.org
*Graphic recognition goes to Rebecca D Thorpe. Thank you, Rebecca for your contribution.
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