Yes! Feeling like that bug about now. Now that I am no longer on some of the mind-altering drugs (for Trigeminal Neuralgia) and other meds and thinking clearly for the first time in months, I thought I’d write a catch-up/review of what life has been like for me the last few months.

I cannot stress enough that you must be your own advocate with health issues. Someone invented the internet for us. Use it! A lot!! That being said, let’s head back to November of 2019 and I’ll begin my run-down of, “Is this really my life?”

I began taking Carbamazepine for Trigeminal Neuralgia in September after having three back-to-back TN episodes where it felt like acid had been thrown on my face. The pain is indescribable. The nerves in my face became hyper-sensitive to the excruciating pain and I could feel it spider-veining across my face. My PTS had already worsened because of previous episodes and after these three episodes, I was a hot mess, a red hot mess. I contacted the neurosurgeon I had seen at Ochsner and he prescribed the drug that he spoke about at my appointment.

It’s difficult to tell whether or not a drug is working with TN because TN can be sporadic. The few days were not a prelude of what was to come. The pain was gone and I was unsure whether or not to attribute it to the drug. Within days the shocks to my face began to return. They remained minor and sporadic for a while, but eventually returned full force. I was still on the medication, but mostly out of fear. I had no way of knowing if the painful episodes would return, but the drug brought a little comfort to me. Which, looking back, is a little, a lot, crazy because my anxiety and depression were becoming out of control.

I was suffering from the side effects of the drug. Not only were my depression and anxiety increase part of the side effects, but also memory loss, confusion, and difficulty of speech. I recognized that I was having side effects, I just wasn’t realizing how my personality was also changing. Friends have recently told me I was a little loony. I was often repetitious and forgetful and couldn’t string two thoughts together.

Fast forward to the beginning of November, I was still on the drug but my primary doctor discussed trying DeLoxetine as an alternative to the Carbamazepine. DeLoxetine would help with my anxiety and depression and hopefully the neuropathy. I was experiencing problems with all three so I decided to give it a shot, also hoping that I would be able to wean myself off of the Carbamazepine.

Although I mentioned different symptoms to my husband, they weren’t registering to me in the drug stupor I was in. It wasn’t until I sat down and began doing research and putting together a timeline of drugs and side effects and drug interactions that the picture slowly began to take structure. I spent several hours on the phone with a pharmacist friend and a physician assistant friend and nurses who are friends. I am very fortunate to have a good medical support system in my circle of friends. Together, we troubleshot and bounced ideas around and then I contacted my doctors again.

I was also doing some heavy-duty praying for wisdom and guidance during this time. I know that is what led me to take some of the actions that I did. Looking back at 2019  a pattern of trigeminal pain and lack of nutrition from not being able to eat properly showed up. That, along with the chemo drugs and TN drugs, was causing my body to stop functioning as it should. My body was not retaining anything I ate or drank and this continued for about six to seven weeks. During that timeframe, I was undergoing diagnostic tests and was put on a powerful antibiotic, which it turns out I didn’t need because I finally tested negative for the bacteria.

Through my prayer time, I received a message that I needed to detox my body and stop all unnecessary drugs and supplements and I needed to eat to give my body the nutrients it needed to heal. I stopped taking the cholesterol medicine I had been prescribed. I weaned myself off of the DeLoxetine and all supplements, and I began to decrease the Carbamazepine. Meanwhile, my platelets, red cell and white cell counts all plummeted to below normal so the Oncologist decreased my meds.

I had a break from the trigeminal pain and was able to begin eating small meals. My body still wasn’t retaining anything and add to that, horrible stomach pains. I knew that I needed to keep eating through the pain and did so. I slowly began feeling the smallest, tiniest bit better. Note here – when you feel as bad as I did, you notice anything. This continued through January. I saw my primary doctor at the beginning of February and we went over the remaining meds and supplements I was taking. We were still troubleshooting what was going on. I discontinued the probiotics that I had taken for years and the Metamucil. I found out that the stomach aches were bruising from my system being haywire. She also thought that I may have become lactose intolerant and I stopped all dairy.

That was a light bulb moment! Within 24 hours, I began noticing a slight improvement that would continue. Meanwhile, she wanted me to get a colonoscopy. I wasn’t strong enough to do this in January. In February, the prep made me severely ill and I could not get out of bed so I missed the test. We reschedule the text for March with a different prep. This prep also made me severely sick and once again, I missed the test, although I think there was more going on this time.

I spent the time between the two tests praying that if I was supposed to take the test, then I would be able to tolerate the prep. I was unable to tolerate the prep and at the same time I was supposed to be at our little hospital checking in, there was a patient admitted with the coronavirus. Having Leukemia, a compromised immune system, and being 62 years of age puts me in a higher risk category. I took that as the sign I had been praying for. I am done with the test. My body has been through so much this past year and my biggest fear was by putting myself through the prep process for the test, my body might not recuperate again. The first time I did the prep, I was sick for three days. This time I was sick for two. I’m just not going to chance it again. My body needs to continue on the healing path it is on. And, the path is not smooth. It is difficult to eat with the TN pain coursing through my face. If it follows the same path it normally does, then maybe soon, I’ll have a few days where I can enjoy eating and non-stop talking!

I am still dealing with trigeminal pain and have been since January. I can only handle so much. Pain, especially chronic pain of this magnitude, wears on the body, both mentally and physically. I’m just tired – mentally and physically. It is nice to be clear-headed once again. I really missed that. I love to write and I love words and not being able to think of even the simplest of words or sentences, be it to speak or write, was weighing heavily on me.

If you made it all the way to the end of my update, you must really have nothing better to do! I appreciate it, never think otherwise. My mission is to educate people on silent killers, diseases you can’t see; Leukemia kills and Trigeminal Neuralgia is known as the suicide disease.

https://mylifeonestoryatatime.com/2019/07/18/living-with-a-trigeminal-neuralgia-flare-up/

https://mylifeonestoryatatime.com/2019/12/21/sometimes-you-feel-like-a-nut-sometimes-you-feel-like-a-science-experiment/