COVID-19 Resources

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.

Rare Disease Day

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.

Life Update

Thought I’d post a little life update for y’all:

-I’m starting an online paralegal certificate program. Advocacy and fighting for disability rights has always been important to me and a passion, so my goal is to work for a firm that specializes in that. If I’m not well enough to work right away, I hope to volunteer for a legal aid organization to use my skills in the interim.

-Since a little after Thanksgiving, Ive been in what seems like a continuous pain flare. Well knock on wood, I think it’s finally breaking! Keeping my fingers crossed 🤞🏻

-I did get to enjoy the Garden Glow at the Missouri Botanical Garden this year. Even though it was cold, with proper precautions, it didn’t flare the Trigeminal Neuralgia up. I’ll attach a few pictures to this post

-I am going to seek out further neurosurgical opinions and see what my options are for further surgery for the Trigeminal Neuralgia. In the past I was told a stimulator or a DREZ operation were my only remaining options. It’s been a few years, so I’ll see what’s said now.

Other than that, there hasn’t been much going on in my life. I hope everyone had a great holiday!!

Essential Apps For Chronic Pain Patients

Smartphones and tablets are a great way to keep track of pain and find information and other resources. Here are a few of my favorite apps. All are free unless otherwise noted.

WebMD Pain Coach:
iSpeech TTS:
My Medical ($4.99):
Pill Reminder by
Chronic Pain Tracker lite:

-WebMD Pain Coach:
iSpeech TTS:
AAC Speech Communicator:
-My Medical ($4.99):
-Med Helper Pill Reminder:
My Pain Diary:

My Trigeminal Neuralgia Story

One of the main conditions I deal with is Trigeminal Neuralgia. This is the “reader’s digest” version of my diagnosis/treatment story

My story is not like most. I am 29 and have Trigeminal Neuralgia. The pain started in late March of 2013. It was not all the time, but very debilitating when it struck. I lived with this until early summer, when the attacks became more frequent, went to my primary doctor who thought that I had some knots in my muscles on the left side of my face. I was prescribed muscle relaxers. They did nothing. His next thought was TMJ. I tried the NSAID medications and saw my dentist (as my primary doctor asked me to). My dentist said definitely that what I have going on is NOT anything he can treat and to go back to my primary doc. When I went back with this information, I saw him and his partner, who also did a full evaluation. They both agreed that the symptoms I have are caused by Trigeminal Neuralgia. That was in October of 2013.

Prior to that in August, I left my retail job and did so at just the right time, pain had increased to the point that I could hardly function. That led to the diagnosis. November was a very hard month, I was unable to drive due to the pain and the pain medications they had me on until I could get a pain management consult.

That happened in December. He immediately put me on Gabapentin. What a nightmare the time to follow was. I had severe memory loss. I could not remember the day, date, where I put stuff, and worst of all, I could not ever remember how I wanted to finish my own sentences. I went back and told my doctor that this medication is a nightmare and I felt like I was going into early onset dementia. This freaked him out, and he told me to go off the gabapentin cold turkey (not recommended, but necessary). I started Lyrica the same day. The pain improved significantly and my memory started to return.

By late January, I was back to normal (after the gabapentin and a bout of pneumonia). I had an MRI in late January. It came back clean. The pain hit a high in February, and I had to wait till mid-march to see a neurologist, so I decided to try Upper Cervical Chiropractic care. The neurologist had nothing to offer, except for Tegretol, which I allergic to. I did not see her again.  I continued to see the chiropractor until mid April, when the adjustments started to hurt. During this time, I began seeing another interventional pain specialist who began doing a type of nerve block called the SphenoCath. These are non invasive SPG blocks. The first one I had in April 2014, and the second in May 2014. They did work. I began having pain during the Upper Cervical adjustments, and my pain doctor told me to stop seeing the chiropractor and to get an MRI. The MRI showed a few disc herniations in the cervical region. PT was started immediately and so was TENS therapy. At this time, I was being evaluated for a genetic condition that runs in my family, Acute Intermittent Porphyria (AIP), due to some issues I was having with the medications. In June, 2014 the diagnosis was positive and the pain specialist told me she could no longer treat me due to the risks.

Back to square one. I sought out a neurosurgeon and found an amazing one here in St. Louis. He suggested MVD surgery, but I was not ready at that point. MY PCP handled the medications while we searched for a neurologist to handle my case.  I got lucky in August, 2014 when I found a great neurologist who understood TN. She also confirmed the diagnosis and we started down the list of medications. I began taking Vimpat. This helped a bit, but due to side effects, we couldn’t dose it higher, so Trileptal was added. I started college during this time too. At the start, all was well. I was having no issues, the medications were helping, and all was well.

Then October came, and I ended up in the ER with a major flare. This was a wake up call that something had to be done, so I called the surgeon and asked to schedule an MVD. It was scheduled for December 17th and I made an appointment with him in November to have some questions answered. My attendance at school became spotty at best. Luckily I was covered by disability services and a plan was worked out. I ended up in the ER again in November with major pain. At this point, I was only on Trileptal due to cognitive issues, which were impairing my ability to function at school. I made it to my surgery date as soon as I could. But as with any nerve pain, the Trigeminal Neuralgia had a mind of it’s own. All in all, from December 2014-October 2015, these are the operations I had:
12/2014: Left side MicroVascular Decompression
1/2015: Left Balloon Compression Rhizotomy
5/2015: Left Side Partial Sensory Rhizotomy
6?2015 Left side wash-out craniectomy for infection
10/2015: Right side Microvascular Decompression and Partial Sensory Rhizotomy
Having five brain surgeries in one year is very hard on the body. Unfortunately due to this, I had to withdraw from university for medical reasons. It took me about a year to fully recover from all this. After about a year, the TN pain became more manageable.
Today, I am doing magnesium and valproic acid infusions every other week and still taking the anti epileptic medications. The pain is much more controlled that it ever has been, and while I still need pain medications, I am able to live a much more quality life.

New Blog

Hi everyone! I just started this blog and plan to chronicle my life dealing with multiple chronic illnesses and chronic pain. It’s not all going to be serious though, I’m also a photographer and plan to share some of my work. It’s a great form of therapy for me too, which is a plus. I’m also a gecko dad and my three gecko kids will definitely be posted about too! Bear with me while I try to figure out how to use WordPress and get this blog up and running. Thanks for visiting!