Just a reminder that October 7th is Trigeminal Neuralgia Awareness Day and the month of October is Facial Pain Awareness Month!! Help us spread awareness, as Trigeminal Neuralgia and facial pain in general are still not widely known about and understood; not just in the general public, but in the medical community. Below are some images you can use!
One of the most anxiety producing things when you live with a progressive condition (like Trigeminal Neuralgia) is the fact that it will inevitably progress. You’re always wondering how and when. Well for me, that time has come. Since about may of this year, my pain has become more intense and harder to control. For the last few weeks, it’s gotten exponentially worse. I’ve even had one ER trip because I just couldn’t handle it and couldn’t control it. It’s been years since I needed to go to the ER for pain control. At this point, my daily base pain level is about a 6/10 and I regularly get spikes in the 9/10 range. Sleeping is hard, eating can be hard, functioning can be hard. I’m about maxed out on medications. I’m planning to go back to my neurosurgeon and see what surgical options I have (I would like to do an outpatient procedure called a Percutaneous Stereotactic Rhizotomy. Being outpatient, it would fit in easier with my schedule). Unfortunately, due to covid, I have to wait to see him (as he works at a major covid hospital).
Dealing with the progression of pain is really hard! Not just physically, but also mentally. I have not had pain levels like this since before my operations in 2015. For that reason, I have started seeing a pain therapist again to help learn some new coping strategies and deal with the feelings that arise. She’s great! I think it’ll be very helpful! I’m also looking forward to working with her to overcome some of the fears I have about my pain scaring non chronic pain friends away. That’s something I have been struggling a lot with lately.
I’ve found keeping myself busy tends to help also. Being in school and training to be a crisis counselor for the Crisis Text Line are good ways to keep my mind occupied and distracted from the pain. Obviously there are some points where that is just impossible and those are the hardest, but in general, if i’m a 6-7.5/10, it usually works. Distraction can be a wonderful thing.
It’s inevitable when you live with a progressive condition that it will eventually progress, but it still doesn’t make it any easier. The best thing to do is just work through the feelings and make sure your medical team is willing to work with you to try and help you as best they can.
Today is Rare Disease Day so I was to talk about the disease/condition that affects my life the most: Trigeminal Neuralgia. The first picture pretty much sums up what I feel with it. I have both types of Trigeminal Neuralgia pain. The Type 1 (shocking) pain) luckily isn’t as frequent as it used to be thanks to the Partial Sensory Rhizotomy I had on each side. The Type 2 pain (crushing dull aching pain) is there constantly. It feels like somebody breaking my facial bikes from the inside out. An ice pick to the jaws, and a vice crushing my face. The only thing that changes is the level of the pain. It’s always there. Medicine only takes the edge off and lowers the pain levels. I also do infusions and nerve blocks to lower the pain levels too.
Trigeminal Neuralgia is very misunderstood. It’s not a “headache”, “tooth ache”, or “TMJD”….. it’s nerve pain and it can be very hard to treat. Patients need to see a neurologist/neurosurgeon for a full workup (exam, MRI, etc).
The best way to help someone like me, with Trigeminal Neuralgia, is understand the pain is severe and unpredictable. I’m always in some degree of pain, and hide it well. But when it spikes past the “tolerable” level, I have to do something. One minute I can be fine, and the next I’m debilitated. Often without warning. When I say I’m in pain, don’t try to argue with me…. I know what I’m feeling and can function in a level of pain that would put most people in bed. When I’m past my “tolerable” threshold I need my meds, heating pad, and rest.
Currently my treatment plan consists of medications (antiseizure meds and pain meds), infusions (magnesium, an IV antiseizure med, and a steroid), and nerve blocks. I’ve so far had five operations to try and control the pain and luckily they’ve helped the electric shocking pain. I will be looking into more surgery to try and control the Type 2 pain, as I’m running out of treatment options and am maxed out on medications.
There are many things that can cause Trigeminal Neuralgia ; a blood vessel pressing on a nerve, a tumor, MS, or a host of other things. Mine is thought to be caused by a genetic disorder I have called Acute Intermittent Porphyria (another Rare Disease) that’s known to attack the nervous system. There is no way to reverse it, we can just treat the symptoms.
A little information on Acute Intermittent Porphyria:
“Acute Intermittent Porphyria (AIP) is a rare metabolic disorder that is characterized by deficiency of the enzyme hydroxymethylbilane synthase (HMBS), also known as porphobilinogen deaminase (PBGD). This enzyme deficiency can result in the accumulation of toxic porphyrin precursors in the body. However, the deficiency by itself is not sufficient to produce symptoms of the disease and most individuals with a HMBS gene mutation do not develop symptoms of AIP. Additional factors such as endocrine influences (e.g. hormonal changes), the use of certain drugs, excess alcohol consumption, infections, and fasting or dietary changes are required to trigger the appearance of symptoms.” (This is taken from the American Porphyria Foundation)
Acute Intermittent Porphyria can be very difficult to diagnose and it took years for me to get officially diagnosed. I had one very severe attack that put me in the hospital for several days with severe severe abdominal pain, tachycardia, nausea, and I went into acute renal failure, and my liver was beginning to fail. With my family history of porphyria, a hematologist was called and started pumping me full of IV glucose around the clock, as well as medication for pain and nausea. It began working after a couple days. The first day and a halfish, I was in the fetal position crying in pain (even with strong around the clock pain meds). The IV glucose slowly started easing the pain. I was hours away from having to start dialysis when my kidney function began rising, as did my liver function. Between the tests I’d had and this attack, I was diagnosed with Acute Intermittent Porphyria.
This was one of the scariest things I’ve been through in my life and I hope I never have another attack like it!!
Hi everyone! I think it’s long past time for an update.
Life has been pretty busy for me lately. I’m almost done with my first term back in college and it’s going well! I’m very much enjoying being back and having something to occupy my brain. I definitely needed it. I’m already registered for summer classes and that’s when i’ll start diving in to social work classes. I can’t wait!
Health wise, things have been holding fairly steady. Unfortunatly that means daily pain but it hasn’t been getting worse. I just had a nerve block done Monday, so hopefully that will keep my pain levels lower than normal for awile. This spring I will be talking to my neurologist about more permenent options to help with the Occipital Neuralgia. I have been responding well to blocks, so that means I should respond well to surgery or an ablation. Would definitley be nice to not have to deal with that pain anymore! I also am going to start looking into surgical options for the Trigeminal Neuralgia again. Something to get me more consistent and lasting relief.
I am very thankful to have been able to get my first dose of the COVID-19 vaccine last weekend. The vaccine I recieved was the Moderna one. The only side effects I had were the sore arm and some fatigue. I don’t get my second one until the end of March. If you’re eligable and get the chance to get it, please do…. herd immunity is the only way we’ll be able to get back to a normal life and end the pandemic.
February 28th is Rare Disease Day! Please show support for those of us who have rare diseases by educating yourselves and helping to spread awareness. More information can be found at https://www.rarediseaseday.org/
I know every update I say it, but my new year’s resolution is to post here more regularly! With that said, I have several updates to share!
- I am going back to school again! I’m going to be getting my Bachelor’s in Social Work. After finishing my paralegal certificate, I decided to finish my bachelors degree so I can work in Disability services. Ideally I would like to work in a college or university disability access office; helping students obtain the accommodations they need/are entitled to and advocating for them. I’m really excited!!
- My Trigeminal Neuralgia and Occipital Neuralgia pain have been getting more and more uncontrolled. I’m currently maxed out on medications and also getting two types of nerve blocks. The goal is to get me as comfortable as possible. Winter is always the hardest time for me unfortunately. Actually getting an occipital nerve block today. Been counting down the days!
- I’m starting to work on reconditioning myself fitness wise. One of the things I got for christmas is an e-bike setup for my recumbent trike. This will allow me to cycle again (one of my favorite hobbies) but have the motor take over a certain percentage of the work. I can’t wait to try it out!! Will be nice to be able to cycle again!
Here’s a picture of all the lizard kids. Everyone is doing great and Cian (my African Fat Tail who is almost a year old) is growing like a weed!
I know it’s been awhile since I last posted. A lot has been going on. But I thought I’d jump on here and give y’all a little update!
The Trigeminal Neuralgia has still been really hard to deal with. I’ve been in a flare and in pain more than I haven’t. Unfortunately that seems to be the theme for this year. In addition to the normal pain I’m used to experiencing, Ive also been getting a burning pain (my doctor calls it Trigeminal neuropathy) that feels almost like the worst sunburn you’ve ever had while at the same time being bitten by thousands of fire ants. Not fun. I’m managing though.
I had a flare up of the neuromuscular symptoms so my neurologist decided to do a complete workup again. Nothing showed on the MRIs of my brain, cervical spine, or thoracic spine. And my nerve conduction study and electromyogram was normal. A lumbar puncture was done and the chemistrys of the cebrospinal fluid were normal but the draining off of some of the CSF resolved my symptoms, which we were not expecting. So right now we’re waiting for the symptoms to come back and we’ll do another lumbar puncture and measure the pressures. We may have found what’s been causing me problems all these years!!
I’m almost done with my paralegal certificate!! Right now I’ve done everything but the final, so I’ve been studying my butt off for that. Once that’s done I’ll start looking for a gig in a disability discrimination/ADA discrimination/advocacy practice (is also be open to working with other discrimination cases as well). I want to work in a practice where I can help make a difference in the lives of people with disabilities.
Well that’s about all that’s been going on. I’m still doing my infusions (thank god they’re still helping) and with the coronavirus I’ve been taking the guidelines seriously and trying to be as careful as possible, since I’m high risk. Hope everyone is being safe!!
With the protests going on during the COVID-19 pandemic, I thought I would share the following images with tips on protesting safely during a pandemic.
I know it’s been awhile since I’ve posted but between my health and just life in general, I haven’t really had much to say that hasn’t already been said. But now I do have some updates:
– the neuromuscular problems we’ve been chasing since 2015 have recurred. I’m back to having pain, numbness, and weakness in my legs and arms. As they’ve been before, my reflexes are also not normal. I saw my new neurologist today and he wants to redo my workup. So to start, I’ll be having an MRI of my brain, cervical spine, and thoracic spine. I’ll also be having an electromyogram and nerve conduction study. Based on the results of those will decide what the next steps are (like a lumbar puncture).
-my Trigeminal Neuralgia has been progressing. I’m now dealing with a burning pain and a pins and needles/electric buzzing feeling. Right now we’re going to continue to treat with medicine but in the future, I will be seeing a functional neurosurgeon to discuss my surgical options.
– I’m seeing a new POTS doctor at the end of the month. Hopefully he’ll have some answers to improve my quality of life.
With everything going on with the coronavirus/COVID-19, I thought I would share some reputable resources of information. Unfortunately there’s a lot of misinformation being spread. The best way to prepare is to get good information and follow the directions of public health professionals and your personal care team.
- CDC: https://www.cdc.gov/coronavirus/2019-ncov/index.html
- WHO: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/events-as-they-happen
- National Science Foundation: https://www.nsf.gov/news/special_reports/coronavirus/
- National Institutes of Health: https://www.nih.gov/health-information/coronavirus
Tomorrow (February 29th) is Rare Disease Day. As someone who lives with multiple rare diseases, this day has a lot of importance to me. Not only do we need more awareness, we need more research, more studies, and ultimately more treatments (or ideally cures). In the US, drugs to treat a lot of these conditions are classified as “orphan drugs” (a designation that benefits pharmaceutical companies, not patients) and they often come with astronomical prices that are unaffordable to most patients who really need them. If you’re lucky, your insurance company will pay for it and the manufacturer will offer a “coupon” and you can afford whatever your insurance wants you to pay. Welcome to American healthcare, where having a serious and/or rare disease can bankrupt you. This is insane (but that’s a topic for another post).
The conditions I have that are considered rare are Trigeminal Neuralgia and Acute Intermittent Porphyria.
Trigeminal Neuralgia is a nerve disorder affecting the fifth cranial nerve and causes severe facial pain. I have it in the lower 2/3 of both sides of my face and also the upper 1/3 on the right side. The pain I have a dull, crushing, stabbing , achy pain. That’s in addition to the electrical shocking pain the disorder is better known for. TN is treated primarily with antiseizure medications and surgery. I’ve had five brain surgeries so far and still take medications to try and control the pain. I also get medications as intravenous infusions for the same purpose.
Acute Intermittent Porphyria is a disorder that involves how the body responds to and processes heme. It causes attacks of severe abdominal pain, tachycardia, anxiety, organ system failure, seizures, and other symptoms. It’s treated with intravenous administration of glucose and a medication called panhematin. Attacks usually require hospitalization. They’re usually brought on by getting unsafe medications or other substances or a low carb diet. Some people have more attacks than others. Personally, I’ve had one attack that required hospitalization.