FIGHT FOR A CURE FRIDAY Featured Warrior: Heather Calkins by Cristina Marie
Heather Calkins is a 36 year old Neuralgia patient from the state of Texas. Heather says, "My symptoms started in my early teens. Her Trigeminal Neuralgia went into a full flare at the age of 31 and never stopped. It took me less than 6 months to receive an official Diagnosis once that happened." She is officially diagnosed with TN1 (Trigeminal Neuralgia type 1) and ATN (Atypical Trigeminal Neuralgia). She also is diagnosed with Geniculate Neuralgia, Occipital Neuralgia, Fibromyalgia, Generalized Anxiety Disorder and PTSD.
Heather said that as far as anyone's best guess, she has won the genetic lottery! "It's just congenital", she explained, "I was born with a messed up noggin." She said she could drive herself crazy wondering if the million spills she took horseback riding or waterboarding aggravated the situation. "The truth is, we will never know", she said.
Neuralgia patients often try several medications or combination of medications prior to looking into medical procedures. Heather said, "I can't even remember everything I tried at this point. Gabapentin, Trileptal, Norco and Dilaudid worked best for me before surgery." Heather has had four MVD's (Microvasuclar Decompression) brain surgeries. One of those was done with a Rhizotomy. She has also had Gamma Knife Surgery, a Peripheral Neurostimulator Implant ( implant, redo and removal) surgeries. She had Occipital Nerve Blocks, Sphenopalatine Gangloin Block, Supraorbital Nerve Block, Supra Trouble Nerve Block and an Infraorbital Nerve Block. Heather says, "My fourth MVD was successful. I am now in remission thanks to Dr. Mark Linskey in California!" She does not foresee having to need anymore procedures.
I asked Heather to describe to me the pain that she would experience during an attack prior to her successful MVD. "It would feel like an ice pick to the eye, a hot knife sliding in my ear and poking my eardrum. A baseball bat wrapped in electric barbwire whacking me in the cheekbone. A sewing needle through my eyeball. A railroad tie nail being hammered through my forehead and out the bottom of my orbital socket!" She explained.
Heather is now in a full remission following her fourth MVD on September, 3, 2015. As we know, Trigeminal Neuralgia is considered an invisible illness. However, many patients report facial swelling, redness, droopy eye, cheek, ect. Heather is one of those patients that gets the facial swelling and redness. We included in her graphic pictures of her face during an attack.
Heather utilizes a product called, DoTerra Oils. She told me that she took them along with her diffuser to the hospital for her last few surgeries and the nurse's all loved her room! I asked Heather if someone wanted to know what they could do to help her, She said, "Be patient with me. I am still trying to work it all out!" Heather has 3 dogs and says that her parents have been her biggest support system. She is also an Administrator for several online support groups. She says, "When I started this journey, I did not know about online support groups. It wasn't until after my second MVD that I found them. I try to stick around and provide support. I remember how scared I was when this all started."
Trigeminal Neuralgia along with Heather's other health conditions has completely changed her life. She was going to school to finish her BS in Biology. Her health got too bad for her to continue. She is now on disability. Heather says, "I was a very active social butterfly before TN. I used to enjoy water sports every weekend." She admits that she has become much more of a home body and has lost many friends along the way. "I lost a lot of freedom to just live by the seat of my pants", she stated. Heather has also gained a lot through having Trigeminal Neuralgia. She says, "I try to stay focused on the positive as much as possible. I have gained amazing friends and I have a new found clarity of what I want to do with my life. Heather also shared that she keeps a Gratitude Journal to help keep her focused on the positive things in her life.
Emily Collins Patsche, a close friend and fellow TN patient of Heather's told me that Heather was the first friend in the TN community to reach out to her. She said, "I'm not going to lie, I thought she was a little crazy with her hair at the time! We soon found out that we are basically neighbors and she led me to my Neurologist and ultimately to Dr. Mark Linskey in California. We just recently hit our one year friend anniversary", she laughs. Emily says that she would never have gotten the help she needed or as quickly as she did had Heather not reached out to her. "I can't put a price on our friendship. I value it so much. She is my main squeeze, my person. Knowing her has made me want to be a better person. She has overcome so much and is a true inspiration."
Heather's advice for newly diagnosed patients is to learn as much as you can about Cranial Nerve Anatomy and your condition. She said, "Doctors will be throwing big words around and it will help if you have an understanding of what structures they are referring to!" She also recommends that you lean on the online support groups. When asked about what she would like to see happen for Neuralgia patients in the future, she replied, "I would like to see a better understanding of what causes Trigeminal Neuralgia, leading to a cure." At the very least she would like to see better therapy options.
Thank you Heather for sharing your story with us as we continue to Fight For A Cure! If you would like to learn more about Trigeminal Neuralgia or other facial pain disorders or how you can help, please visit The Facial pain Research Foundation on Facebook or at www.facingfacialpain.org
#TRIGEMINALNEURALGIAAWARENESS #TNWARRIORS #FIGHTFORACURE
FIGHT FOR A CURE FRIDAY
Featured Warrior: Heather Calkins
Written By: Cristina Marie
Edited By: Susan Mundy Brittingham
Graphic By: Rebecca D Thorpe