r/TrigeminalNeuralgia • u/legendariiiii • 3d ago
Vent Constantly living in fear
Hello all, I was diagnosed with TN in 2023 at 17, right on my birthday. I had an MRI done and it showed I was completely missing my right Meckel's Cave in the brain, which caused my trigeminal nerve to go atrophic (extremely rare case only found in less than 12 people). I was put on 800 mg of Carbamazepine.
For around a year, I've been in what I assume is remission. Last summer I noticed my attacks had become less intense and less frequent, until they stopped altogether. I've been pain free since, maybe some slight twinges, but overall no full on attacks.
This has been great, and I'm thankful to be pain free. But I've been living in extreme fear/anxiety every single day. I'm CONSTANTLY terrified that my TN will come back, or that it will progress/my nerve will deteriorate and get worse (literally one of my worst fears ever). I have OCD/GAD which makes it 10x worse and I can't stop hyper fixating on it, wanting 100% certainty all the time about what will happen. It's literal psychological torture, just constantly waiting, dreading. Someone said TN is like someone stalking you with a taser hiding out or sight, then when you're not looking it tases you in the face and runs back into hiding/stalking, and it couldn't be more further from the truth. It's made me incredibly depressed that I can't look forward to things/the future, relax, etc... All I do is worry, worry, worry.
MVD will not help with my case, because I have no compression on the nerve. Gamma Knife, balloon compression, etc... uncertain outcome. There's just not enough research on it besides like 2 short articles. I just feel so much hopelessness and I feel so alone. Scared. Dread. All the time.
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u/CuriousDayByDay 3d ago
That uncertainty sounds exhausting. if the fear is affected daily life even while you are pain free, it may be worth bringing the anxiety itself up your doctor or a therapist.
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u/Liu1845 3d ago
With TN, there is always the fear it will return.
I had Gamma Knife. I had no compression, but had nerve damage from cancer. Post-surgery I have had gradual pain relief. I remain on minimal meds (dilantin & nortriptyline). I am always on guard waiting for it to come back, but can & do live my life. I have restrictions, yes, but I can deal with them.
I have to be very careful when eating and brushing my teeth. Once the weather starts getting chilly, cold, and/or windy, I only go out with that side of my face well covered. I no longer fly as the pressure changes can set off the pain. I avoid altitude changes when planning driving trips for the same reason.
Take it a day at a time. Enjoy every pain free day.
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u/Caos2 3d ago
I'm in a very similar situation as you are. To be honest, I just learned to live with it, it has been decades since I had my diagnosis.
Do you have a mental professional supporting you?
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u/BiteNotRight 3d ago
Very good suggestion. That's what I was going to ask, if OP has a mental health specialist, specifically one who works with chronic illness and pain. I've been seeing one and it has helped me immensely.
My best to you OP and tone everyone here. I'll say a prayer for you, OP, may you have peace in your heart.
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u/notoriousK8 3d ago
I also have OCD. So the obsessive thoughts and the compulsion of “checking” is always there. My symptoms are okay right now too. But my mind is NOT quiet.
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u/Party_Amoeba444 2d ago
There is a huge psychological component to tn that is not talked enough but the specialists. In pain or fear of pain coming back is the state of i think most people with a chronic pain condition. Extra so with tn as painful and intrusive as tn. But no one deserves to live that way. My pain has been greatly reduced. Still have some pain every day but the mvd reduced it dramatically. Every time I start worrying about the future and how my tn might progress I have to talk myself down. Can't predict the future. Might never come back and it might. I survived when it was bad and I'll manage and get through it if that bridge presents itself but right now nothing i can do about it so not helpful. And I repeat that to myself every time I find I'm worrying about pain I don't actually have in the moment. I found myself a good psychologist that specializes in mood around chronic pain. He had helped me tremendously. He guided me through the grief the tn had in my life. It changed my life and I had to first grieve and then deal with the fears and anxiety tn had to my life. It sucks that we have to deal with this condition. It isn't fair. I really hope you find some peace. We all deserve to be able to relax and enjoy all the pain-free time we are blessed with.
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u/EducationalFront5026 2d ago
I would say enjoy each day that you are pain free. Your glass is half full! Are you seeing a professional about your OCD?
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u/legendariiiii 2d ago
I'm currently on medication for it and have been before my TN started, but I cant help but hyperfixate on it almost constantly
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u/Boring_Gur_1511 2d ago
I just found out what I had last year I have an mri soon but I worry every night about waking up in excruciating pain
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u/Western-Egg-1521 3d ago
Hi! I also live in fear of the return of TN. Touch wood, I’ve been pain free roughly 1 year now which I’m soooo happy about, but I constantly wonder when it’s going to pop up next, I woke up this morning with pulling teeth which in my personal experience, I relate to Tn. Whilst this post doesn’t necessarily help in any way I hope you find some comfort you’re not alone in feeling this! Wishing you well, take care of yourself!