Welcome to my Q and A session with sufferers of Trigeminal Neuralgia!
As you may know from my previous post I have been off from blogging and University due to this condition and I wanted to raise awareness and help people understand what it is! Today is Trigeminal Neuralgia Awareness Day so what better day to do it!
The Trigeminal Neuralgia Association describes the condition as an ‘extremely severe facial pain that tends to come and go unpredictably in sudden shock-like attacks. The pain is normally triggered, for example by light touch, and is described as stabbing, shooting, excruciating or burning. It usually lasts for a few seconds but there can be many bursts of pain in quick succession.’ It is also known as the suicide disease as many people commit suicide due to the incapability to cope with the pain.
So here goes the Q and A with the lovely Jennifer George, Kathy Neufield Grant, Stan Sosnicki, Lisa Redcliff, Erika Greenup, Dawn Marie, Elizabeth Conger, Barbara Lester, Lisa Collins, Courtney Neff and Lucy Volpe.
What was your first experience of Trigeminal Neuralgia? What does it feel like?
Jennifer George: I have both constant pain and intermittent flares. The constant pain is more of an underlying ache that covers lower part of my face starting at the ears. The flares are sharp stabbing pains. Having my head on my pillow is impossible.
Kathy Neufield Grant: The pain is a shock, stronger than a zap. It is like jolts of electric pain. A stabbing in the teeth pain. Unrelenting pulsing shock of increasing intensity lasting seconds, repeating for hours.
Stan Sosnicki: I know what it is like to have a wasp sting the back of my eye 60-80 times a minute for an hour straight. I have also had attacks where I feel as if was electrocuted for 3 hours straight whilst having my eyelids sewed shut with a sewing machine. It is torture beyond comprehension.
Lisa Redcliff: The first time I felt any pain we were on vacation. I had severe left eye pain. I thought it was a migraine even though I had never had one before. I spent most of the holiday in bed. It lasted for a week or so and then no pain for a few months. Then I was driving, I remember exactly where I was. I got severe pain pain in my nose and upper palate. It only lasted for a few more minutes but it kept on happening. The pain is breath taking, it feels as if I stuck my cheek in an electrical socket.
Erika Greenup: My bones feel like they have clamps crushing them. All my left teeth feel like they are on ice. My tongue, inner cheek, gums and roof of my mouth feel like they have been burnt by hot food. It feels like nails have been pounded into my eyeball.
Dawn Marie: I couldn’t sleep one night because my front tooth hurt, it was horrific! I took medication but it didn’t touch it. It was this electric, hot pins and needles feeling that was relentless and I cried all night.
Elizabeth Conger: The day to day pain feels like a mallet pounding on my right cheek while something sharp and curved pulls on my eyelid. A hot knife feels like it is slicing my features off. Molten lava drips down my neck while electric shocks and aches travel all over my head.
Barbara Lester: Pain is like a finger in a socket plug, burning and explosion inside of your face.
Lisa Collins: Like someone was screwing a screw into my jaw with jolts of electricity like pains going through my face. I couldn’t touch any part of my head without crying. It was like being tortured and someone is peeling back your skin leaving the nerves exposed. Sometimes it feels like someone has taken a pickaxe to my jaw.
Lucy Volpe: Lightening strikes in the mouth and tongue. It is so bad your heart races, your face turns red and you lose your breath.
Courtney Neff: The pain is goes from a 0-10 in seconds and all I can do is close my eyes, double over and try to ride it out without screaming. I get a few minutes to brace myself as I know the next wave will hit soon. Pain slams into my face like lightening and pain behind my eye feels as if someone has stuck a pick axe through it. I rock back and forth screaming wishing the pain away. It goes from low to high pain, dull to sharp and then electrifying all day. The good months are great but the bad months are bad.
How long did it take you to get diagnosed? What was/has your treatment been like?
Jennifer George: I went through 2 Dentists, 2 Oral Surgeons, a few Doctors and finally a Neurologist who put the diagnosis on paper.
Stan Sosnicki: I looked up TN before going to the Doctor and told him I thought it was what I had. I was getting over 100 shocks a day by this point. He started me on medication and my symptoms subsided. I had flare ups for 6-12 months but my neurologist would change my meds with each one. However most medical professionals are ignorant and unsympathetic to this condition.
Erika Greenup: It was 5 months to diagnosis. I slept 3-5 hours a night during that time. I was a zombie mess. I have gone through 3 Neurologists and a Neurosurgeons. I have tried 9 medications each for at least 1-2 months an none worked very well. I finally settled on the best of the bad and now live with milder pain, dizzy spells, brain fogs and fatigue.
Courtney Neff: My pain started in 2015 when I was 22 years old. It started like toothache that came and went. Six months later my pain was all consuming and severe. I ended up in the Emergency Room and they thought I must have fallen and hit my head or be being abused. They sent me away with no answers, only questions. After more visits to the hospital I finally had a young doctor who knew about TN ask me about my symptoms and told me that after six months I should be feeling better as I was young and healthy and my nerves should re-agulate. They put me on medication, but I felt like a shell of my old self. I was always tired, the brain fog was horrible, I was nauseous and dizzy all the time and I was gaining a lot of weight very quickly. I told myself just 4 months more, just 2 months more and I would be fine. Eight months after my original diagnosis I finally saw the Neurologist, he was an uncompassionate asshole who poked me with pins till I had an attack and sent me away. I was devastated. I did my own research and found an online support group and it made all the difference. I learned so much from my fellow TN warriors than I ever did my Drs or specialists.
How has it affected your life? (Socially/Emotionally/ Work etc)
Kathy Neufield Grant: The medication can be very debilitating as well as the condition. My motor skills and cognitive skills were affected. My brain could not process spoken or written words, I could not remember things. I fell a few times as my reactions time were very slow. Since I couldn’t talk much I didn’t socialise. I missed church for a because the vibrations set off pain. I was only able to drive in the mornings because I felt unsafe as I was so fatigued by the evening. I haven’t been able to see my newborn grandson or help my daughter because the pain couldn’t be controlled.
Lisa Redcliff: TN has taken so much from me! I left my job a few years ago because my memory and concentration became so bad. I got to the point I had to lay down due to the pain. I am a Registered Nurse and had worked in Peadiatric ICU for 15 years, I had to leave a job I loved. Since I have lost every friend I have ever had as I couldn’t go out or do the things we usually did so we grew apart and I haven’t heard from any of them for years. I have been married for 21 years, but we are now more like roomates. We can’t be intimate because of my pain and we can’t go out and do anything together either. I have raised my children through my pain and the only good thing to come out of this illness is my children learning and understanding chronic illness. They are so compassionate and helpful and they are the reason I keep fighting!
Barbara Lester: It ruined ten years of my life. Being on several med gain weight, I felt lazy and ditsy until my surgery. I am worried about every temperature condition or it being windy. I was worried about being on the boat, car and how travelling could trigger a flare. A trip of a lifetime was ruined by my TN.
Courtney Neff: I have to be aware of my limits now, and not too push myself too hard or I will pay with horribe pain. I don’t go our nearly as often as I used to. I say no more than I say yes. I suffer with side effects of medication like fatigue, brain fog, memory problems and weight gain. TN has taken my confidence, I look in the mirror and don’t recognise myself some days. Knowing I will have to always fight with TN takes me through boughts of anxiety and depression.
Have you missed any events due to TN?
Lisa Redcliff: 12 years into my TN diagnosis I am homebound. I have missed many family events. I have missed my children’s sporting events and one of the things that hurts me most is how much time I have missed with my kids. I couldn’t do the things I wanted to with them. I have spent time in bed while they have been growing up and I would do anything to get that time back with them.
Stan Sosnicki: I have missed weeks of my life when flare ups keep me from working or any activities with family and friends. I miss brushing my teeth or eating without fear. I miss washing my head in the shower. Most of all I miss not being afraid.
Jennifer George: It’s inevitable that your are going to miss things in life due to this condition. I have spent Christmas in the ER losing family time. I have had to cancel craft shows with my jewellry business. I have missed dates and spending time with friends. I missed being the Maid of Honor at the wedding of my longest running friendship. I have known her for 32 years.
Courtney Neff: My biggest regret is missing Thanksgiving two years ago. My partner and I got halfway there when the pain went from a 5-10. I was hyperventilating I was in so much pain. We turned around I went home where I took extra meds and tried to sleep it off. That ended up being the last Thanksgiving my grandfather had before he died and I missed it. TN took that away from me, and from my family who was expecting me to be there. That is something I will never get back and it causes me great pain.
Any top tips for sufferers?
Kathy Neufield Grant: Use a baby toothbrush with sensodyne toothpaste (not minty fresh!) Do as much of your normal life as possible and find something that will distract you from the pain. I would lift weights or swim laps or practice yoga. Don’t be too proud to let your friends come and clean your house or bring food, especially if they ask what they can do to help! Also enchiladas taste pretty good through a straw!
Lisa Collins: Pain is so much worse when I am stressed, so try and relax and stay as stress free as possible!
Lucy Volpe: I lived on extra strength ambesol between small bites of food or water! Find experienced medical professionals and if you are eligible for MVD go for it!
Erika Greenup: Lidocaine products have been my saving grace but they only last an hour. Music can be great. I never sit in silence because then my brain can really focus on my pain and I don’t want to do that so I always have music or a video of some kind. I also started project Masking the Pain where I paint the parts of my face that hurt.
Finally, what do you want people to know about the condition?
Elizabeth Conger: I want people to know that it is real and although I understand sickness and chronic pain can be scary from the outside, it is not something we can control and we are always trying our best. It’s not a plea for attention or a responsibility free life, it is something we shoulder and grit and bare. We don’t want to be a burden on anyone and we strive to leave a normal life. We are trying our best to be happy and loved and create the version of ourselves that seems true to us as we grow and live our lives.
Courtney Neff: I wish people knew that just because you can’t see a disease or pain doesn’t mean that someone isn’t suffering. The amount of disbelief I have been met with, the whispers of ‘It can’t be that bad’ wear me down. I shouldn’t have to defend my pain to anyone, and yet it seems that I do it regularly.
Lucy Volpe: There is help out there. Be diligent. Don’t give in. Don’t give up.
So there we have it! A very informative chat all about the pain of Trigeminal Neuralgia. It has been really wonderful being able to write and share the stories of these brave warriors and I hope it has opened just one persons eyes to the condition that these people and I suffer with.
Thank you so much for reading and I hope you all have a wonderful week.
Hannah Jayne Artis ❤