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Rough 3 months and Just Need to Vent!

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So, here's the backstory... in 2016 I was diagnosed with Trigeminal Neuralgia (it's a condition that causes chronic facial pain that is so horrific that it's recognized as one the most painful conditions known to mankind and has garnered the nickname 'Suicide's Disease') and I have both 'Typical' and 'Atypical' TN and I had a flare that lasted 10 months and I was in so much pain that I had many moments where I would think of ending my life to escape the horrific pain. My family was the only reason that I held out. I tried to take it day by day, but it was horrific. It's like being dropped into hell while still being alive. Having to live every moment where every tooth in my mouth hurt from the inside out and it feels like needles were digging into my jaw. And THEN I would get stabbed in the face by a scalding hot poker that twists and twists and twists and twists and then pulls out and repeats endlessly. I was in excruciating pain every second of every single day for 10 MONTHS! I felt like I was slowly going insane. I would get 'power naps' of like 5-15 minutes when I would get a miraculous break in the stabbing pain, even though the tooth and jaw pain stayed, because I was so exhausted. On average the power naps would maybe equal 1-2 hours of sleep a day. Though there were days I didn't sleep at all. AND I had to sleep sitting up because laying down was a trigger. But finally after 10 months I had something called an MVD (Microvascular Decompression) in May 2017 which is a type of brain surgery and that was the end of that particular flare and the pain.

However, Trigeminal Neuralgia doesn't have a cure. The brain surgery was basically putting a patch on it and hoping that it held out for years. The brain surgery was for the left side of my face, but I have Trigeminal Neuralgia on BOTH sides (just the right rarely flare and if it did it was usually only 3-5 days TOPS and then it wouldn't bother me for MONTHS. One time it didn't flare for 22 months which is almost two YEARS. For reference, I was officially diagnosed in 2016, but I've had TN since 2010). In September 2021 I started getting eye twitches (on both sides) and then other facial twitches and I KNEW it was coming back because the twitches are symptoms of an oncoming flare. I remarked to my family members in absolute fear and panic that I felt that it was going to come back. It's been my biggest fear of it coming back. Then in April of this year it hit. The right side started to flare (with random ass flares on the left as well) and at first I could withstand the pain, but it got worse and then I was put on Gabapentin and I gained 18 friggin' pounds! I couldn't stop taking it because I was in so much pain that the meds were keeping me sane. However, I kept having to increase the dose because the pain was getting worse and worse. I ended up taking the max dose and then one night the pain was so bad that I was sobbing on my bed and the thoughts of just taking a handful of the pills hit me and it scared me. I went to the ER the next day and they were so busy that I had to wait three hours in the waiting room while I was sobbing in pain in a chair while strangers kept staring at me because I was curled up in a fetal position in a chair sobbing my eyes out because I was in so much pain and it's breezy in there and that was making it WORSE! I knew from experience that I had to do the research myself because the doctors don't know crap about Trigeminal Neuralgia because it's rare and they don't know how to treat it (it's usually treated by a neurologist. But there are none in my county that take my insurance). So I gave the doctor my list of medications and told her that Oxcarbazepine worked well with Gabapentin and so she gave me enough to last me until I could get into see my PCP. And miraculously it WORKED! I was able to slowly lower my dosage of Gabapentin by HALF (I was taking 3600mg which is max dose. Now I take 1800mg) and take 900mg of Oxcarbazepine. And because I was able to drop my dosage of Gabapentin I've been able to drop 12 of the 18 pounds I gained, but the last 6 pounds just will not come off! I'm still having a flare. I still feel the pain in my face, but it's muted (mostly. Don't stick me in a breezy room or the pain worsens. And sometimes eating sets it off and makes it worse. And sometimes lying down sets it off too. Also, cold or hot things will sometimes set it off. Yeah, eating is not fun. At all. Also, I don't sleep at night because it flares worse at night). I'm supposed to be going to have acupuncture for my Trigeminal Neuralgia next week and my hope is that it'll fully take the flare away. I also FINALLY get to see a neurologist in three weeks though I have to drive two hours away to see one because no one near me takes my insurance. I have a sneaking suspicion that the flare is actually caused by my Mast Cell Activation Syndrome because I've been having more and more issues with rashes lately (though when my face originally started to flare in April my MCAS was fine. May and June too were fine, but this month my rashes have gotten bad and so has my joint pain which is caused by osteoarthritis and fibromyalgia, which the fibromyalgia is suspected to be caused by the MCAS). To top it off I can't figure out why my face is so damn greasy. I mean I was using topical lidocaine on my face to help with pain management for my TN (in addition to the anticonvulsants, i.e the gabapentin and oxcarbazepine, I take over the counter stuff like Tylenol, Tumeric Curcumin, and Alpha Lipoic Acid to help with pain management) but I had an allergic reaction from overuse (I'm assuming) called Petechiae (which caused red spots on my eyelid) so I stopped using it, but my face has been super greasy every since. And I've been losing more hair lately almost like when I was in the weight loss phase of my surgery. I know it's one or both of the anticonvulsants, but I can't stop taking either one so I'm not sure what to do.

So yeah. Just felt like venting my frustration. It's been a rough three months (almost four) and I just needed to unload. If you've read this far, thank you. If you have advice on the greasy face, Hair loss, or how to lose the extra 6 pounds while taking two anticonvulsants that make it damn near impossible then please help! If you have any experience with Trigeminal Neuralgia or MCAS and have advice then please share that as well...

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I don’t have any experience with anything like what you are going through but want to just say I’m sorry that you are experiencing all that. They do have some newer weight loss drugs that are said to be good if you just have a few pounds to lose but they are still having a hard time getting them covered by some insurance. I guess they are really diabetes drugs and they would be covered but for that use. Hopefully they do cover them soon for weight loss but it’s worth looking into. Maybe your one of the lucky ones that your insurance will cover it now.

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What a story, I cannot imagine what this must be like for you. I’m afraid I can’t be of much help regarding advice but i am sending you so many positive vibes and well wishes! 🌼🌸🌼

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