Father with Trigeminal Neuralgia, family in need

Hey everyone, thank you in advance for taking the time to read this post. I was very hesitant at starting this gofundme, but the time has come for me to do it.

Twelve years ago I started getting the most intense headaches I've ever experienced in my life. The pain would start slowly in my upper right jaw or top pallette of my mouth, and slowly work its way up the right side of my face until it felt like someone was stabbing my right eye with an ice pick. I tried taking Asprin, Tylenol, Ibuprofen, Motrin, even Midol, to no relief. At first I thought it was a migraine, and after speaking to my Dr, he believed I was suffering from Cluster Headaches and prescribed me a bunch of meds, even an o2 concentrator, to help calm my symptoms.

After about three years of nothing working, he referred me to a neurologist. I saw the Neurologist who again believed that I was dealing with a major cluster headache issue, and prescribed even more medication, none of which worked.

Two more years of no relief and I thought I was losing my mind. I went to the dentist thinking I might have a hole in my tooth or something jammed in my gums but everytime they said I had no dental issues that could cause the pain I was dealing with. I finally resigned to the fact that nothing was ever going to fix my pain, and I would just have to 'deal with it'.

For another 7 years I tried to deal with the pain, pain so intense that I couldn't stop vomiting and dry heaving, pain so intense I would be in a pool of sweat shaking, and I was terrified because it was getting worse and lasting longer. When it first started, the pain would last for maybe 1-5 hrs. But 7 yrs later, it was lasting days, with no let up. The pain was always at an 11, I couldn't eat, drink, or even do basic everyday functions because of the pain. I worked then and every day since, to minimize anything that might trigger a flare... including quitting smoking, quitting drinking, and even working from home so I am not out around people who might have on fragrances or be smoking cigarettes, or airfresheners or cleaners. So many things can trigger TN that we have no control of, even barometric changes in the atmosphere.

After meeting my wife Nikki, who has unfortunately had to witness me on so many bad days, she convinced me to go back to a different neurologist and see what they would say. I met with a Dr at the Center for Neurosciences in Arizona and explained my symptoms and what I had been dealing with for all these years. He ran some tests and noticed that I had minor facial paralysis on my right side. He came to the conclusion that I am suffering from Atypical Trigeminal Neuralgia.

What is Trigeminal Neuralgia?

Trigeminal neuralgia is a condition that causes painful sensations similar to an electric shock on one side of the face. This chronic pain condition affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.

What makes mine Atypical is that no meds work for me. I have tried over 40 different medications to no relief, another reason is this usually affects people over the age of 50, and that someone of my age having it is not that common.

I was presented with 2 options,

Option 1. Microvascular decompression surgery.

Microvascular decompression is a minimally invasive surgical procedure using endoscopes that:

• Treats the cause of the problem

• Offers the most long-lasting relief

• Minimizes risk of postoperative side effects like numbness.

Microvascular decompression relieves abnormal compression of a cranial nerve. The surgery consists of a linear incision behind the ear followed by a craniectomy (bony opening) the size of a silver dollar.

Under the view of a microscope or endoscope, the surgeons detect the area where the blood vessel is affecting the nerve and then separate them, leaving a Teflon "pillow" in between.

(One major drawback to this procedure is that it doesn't always work, and it can cause the TN pain to come back 1000x worse, and become permanent with no relief ever.)

Or option 2. Gamma Knife radiosurgery.

Gamma Knife radiosurgery is a painless procedure that uses hundreds of highly focused radiation beams to target tumors and lesions within the brain, with no surgical incision.

Patients with typical trigeminal neuralgia who have had an adequate trial of medications can be offered Gamma Knife treatment. It is typically used for

• People with medical co-morbidities or pain that continues after surgical procedures

• People at risk for side effects from percutaneous ablative procedures

• People in more advanced age groups.

While this procedure works the best for typical TN patients, it carries a high risk for a brain stem stroke in Atypical patients like me. A brain stem stroke is 100% fatal. This method also has a 50% success rate and my Dr is concerned about the long term affects of this kind of radiation on someone my age, because they don't have any studies on it.

I have an appointment on June 6th with the surgeons to figure out the best route.

So what does this all mean?

This disease is terrible, there is a reason they call Trigeminal Neuralgia "The Suicide Disease". When I'm in a TN attack, it takes away my life, it takes me away from my family and friends, it takes me away from doing my passion of music production and DJing, it takes me away from work and other responsibilities.

Along with that comes the absolute cripping depression and anxiety. My pain isn't external, and trying to explain to someone how bad your headache is isn't always recieved well. I have been told I was "faking it" that I was just "lazy". I have felt the resentment from family and friends when im unable to do or go with them because of a TN attack, no blame to them, but seeing disappointment in someone's eyes still hurts. When I'm in a full blown flare, no one can do anything and I'm trapped in my head, feeling, hearing, seeing every unending pulse of pain that makes me want to slam my head through the wall. Doing nothing I am still at risk of having a stroke or seizures, every time I have a flare. These flares that last days long literally have me terrified that 'maybe this one is the big one.'

Most recently, as many of you know, I fell and broke my wrist and shattered my tibia and fibula. This injury and the subsequent surgery to fix my leg has recently sent my TN into overdrive, causing to use more of my emergency meds (which insurance doesn't pay for) and also more cannabis which I use to help regulate my pain during the day. Even with having a medical card insurance won't pay for it (for obvious reasons).

I am the sole provider for my house and family of 5. My wife Nikki is disabled and is currently waiting on a decision from the SSDI administration on if she qualifies. While I have been off work due to my leg and arm injury, the bills have piled up. I am on short term disability leave and still getting a paycheck to keep us afloat, but with rising food, and gas prices, and the fees charged from paying bills and rent late, we are completely drowning. I return to full duty on 4/19.

Depending on what the surgeon says on June 6th, there is a likely chance that I am going to miss more work and will not be able to use more disability leave time, as I received a letter that I have used 90% of it already.

We are already struggling to keep food in the fridge, meds for me, a roof over our heads. While we do get some public assistance like food EBT, but making 3 meals a day for 5 people takes a lot. Usually we would stream on twitch to help make ends meet, but with Nikki's Fibromyalgia flares and my TN as well as physical injury, we have been unable to keep up with the internet bill and it has been disconnected. We still have a bunch of delayed orders to send out to people that we weren't able to afford postage on yet. We have listed several items of ours for sale and cross posted them to other sites to try to raise some money ourselves. But it's been a few weeks and aside from some scams we haven't had any interested buyers.

I'm scared, I'm afraid that im going to lose everything that I have built and made for myself, my wife, and our kids. I have held so much in, afraid of losing even more friends and relationships over this. We try very hard to not post negative things until the hit the fan, because we are determined to figure things out on our own. Due to the fact that we haven't been able to find a fix for our health issues, with the rise of the cost of living, we are finding ourselves in a situation we are unable to lift ourselves out of alone.

We are asking for help to be able pay our rent for the next 2 months as we prepare for the next steps of this TN journey. I hate asking for help, because I feel like that's all I do, but I don't know what else to do.

I am eternally grateful for those who have reached out in the past few weeks and have donated to us during our streams. I hope to be able to hug every single one of you someday.