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This week I plan to post a little each day detailing my journey with Trigeminal Neuralgia, specifically with Supraorbital Neuralgia. My intention is to give you insight into what someone with SN experiences on a daily basis. It is not a bid for sympathy. My belief is we experience things for a reason and we should use those experiences and what we’ve learned to help others along the same journey. I have tried to do exactly this through many posts on my blog. I also want to educate people about this disease. I try to keep a positive outlook so I do not post daily musings about my journey with pain. I’m making an exception to that rule this week. As always, you can follow along or not. I hope you do.

While these particular neuralgias are rare, many people do suffer from them. One thing I find frustrating is I  hear a lot of people say that when they’ve ended up in the ER, the doctors are less than sympathetic, sometimes downright dismissive. Some people have experienced such harshness from doctors thinking they are there for drugs. My heart goes out to them and I personally feel these doctors should be reported. I am not sure if it’s a lack of knowledge on the part of the doctor, or if some just don’t want to be bothered by something they can’t control. When you look at a person suffering from these neuralgias, they look normal. You can’t see the pain. If the eyes were windows to the soul as the saying goes, the pain would be visible. I’ve long stopped believing in that saying.

I personally know that there is no instant solution, both from research and my personal journey, and can’t see myself ending up in an emergency room with no specialized doctor available. And, from the stories I have heard, people have not received relief from these visits. It is a journey. There are several procedures that may or may not help, or if they help may not be permanent. It is the same with the drugs being used to treat these neuralgias. Some work, some combinations work, some work for a while, and some do not work at all. I do know it scares me to see some of the combinations being used to gain relief. But, experiencing the same pain, I can understand trying anything and everything just to find a modicum of relief.

Today, Sunday is no different than each day of the past week has been. I woke up in the middle of the night and realized I wasn’t in pain. I did read an article that said the pain seems to subside when we sleep. How that conclusion was ascertained I have no clue, but it does seem to be true. I think our bodies are exhausted from the pain and we finally relax once we hit realm sleep. It is the only conclusion I can come up with that seems plausible. Again, I speak from my experience.

Upon waking this morning the pain wasn’t immediately noticeable. I normally notice the pain when I first speak or drink. I personally believe it has to do with stress and anxiety, and my neurosurgeon stressed this very issue. When you spend your days in varying amounts of pain, you certainly begin your day with stress and anxiety thinking and wondering how much pain you will have today. That alone triggers pain. Our bodies are odd little machines.

This past week, I experienced an intense burning in my face that felt as though acid was running in the nerves. There is nothing to be done. It can be brief or last for long minutes. You have to wait it out. It operates on its own schedule. Right now, at this moment, it feels like someone is drilling a hole in my forehead and I really wish they would stop. Earlier, when I sat down to drink my cup of hot cocoa, the nerves came alive. That is usually how my day begins and I can tell what I’ll be dealing with all day. The nerve from my forehead is a nerve that travels down my face and feeds my lips and pallet. The only picture that comes to mind to explain it is to picture watching and listening to a cow drink water. Yep! That about explains it. Noisy slurping and hot cocoa dripping down the chin and a chocolate mustache. I kid you not. I experience pain when I drink and you find yourself drinking any way possible to lessen the pain. I guess if you want to see the humor in it, you feel like a cow because I don’t think my dog is that messy when she drinks. Sometimes you think is it even worth it. After each sip (slurp) I wipe the cup, wipe my chin, and then brace myself to blot my lips because with the nerve firing, it is extremely painful and knowing you have to hurt yourself to wipe your lips is daunting, to say the least. Imagine having to make the decision to hurt yourself on purpose, over and over and over again throughout the day if you simply want to drink. And, that not eating.

Sunday mornings involve homemade biscuits. It’s like owning a cafe. You cook for everyone else but you don’t eat. This morning I managed to pinch off a few bites (actual biting down is too painful) and place them in my mouth. Then, I worked the bite around the left side of my mouth and sort of let it almost chew itself. I know, face-palm here. Then, when it is really soft, I can manage to swallow it. I have to be very careful not to engage my pallet since that is where the pain concentrates.

To better understand how I eat, I will walk you through it so you can attempt it. Break a small bite of food, nothing really hard, and place it to the left side of your mouth. Use your tongue to block it from entering the center part of your mouth so it doesn’t connect fully with your pallet. Using your tongue and side of your mouth as you would normally use your tongue and pallet, emulsify the bite and then scoot it with your tongue around to swallow. Then swallow without your tongue engaging your pallet. It can only be accomplished by concentrating. Now, take a normal bite and do your thing. Big difference.

It’s a decision-making process to decide if I’m going to eat or not. I never take a good meal or even a bit for granted. Keep in mind, there are many others like me. I find myself helping others figure out how to eat and take their meds. Taking meds is a challenge in itself as you have to make a conscious decision to hurt yourself, to cause yourself great pain, in order to swallow your meds.

This will end today’s little blog. The rest of the day will be the same or worse. That is just how it goes. I hope you take the information I provide with this post and daily throughout the week and use it to offer someone patience and understanding when you see their suffering. But, also keep in mind, don’t dwell on it, as we like to be treated like we are normal. Pain is our normal, but it’s not who we are.

Thank you for reading and may God bless you this day.

 

https://mylifeonestoryatatime.com/2020/05/17/the-trigeminal-neuralgia-chronicles/