Jump to content
Are you looking for the BariatricPal Store? Go now!

Rough 3 months and Just Need to Vent!

Recommended Posts

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...

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

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! 🌼🌸🌼

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Trending Products

  • Trending Topics

  • Recent Status Updates

    • BeanitoDiego

      I weighed 199 pounds (90 kg) this morning! I felt accomplished and happy, and celebrated by going to the gym to lift some weights. Hoping everyone else out there is making progress, whether you are pre- or post-op 😊
      Today is 7 weeks and two days post-op for me. I've been through two stalls already, but I am sticking to the program. I want long-term success from all of the sacrifice and pain. You all know I mean!
      · 0 replies
      1. This update has no replies.
    • BlSm12

      Okay so, as of yesterday my insurance company contacted me direction to say, that I was approved and have completed all the required items on the "To Do List". so, I should be getting my appointment next week for meeting with the Anesthesiologist. I'm very excited/nervous, but extremely happy too. 
      · 2 replies
      1. New To This23

        Congratulations!!! I see you live in Ashland, when I was in High School drama club we went to the Shakespeare Festival there. I hope to go back one day!

      2. NickelChip


    • BeanitoDiego

      Tomorrow will be 7 weeks since surgery. Yesterday i found that I was able to finally drink more than a sip at a time. I am SO grateful! I have always loved drinking water and it has been my primary beverage for most of my life; losing the ability to drink a lot of it was my first post-surgical regret. Being able to drink more than a tiny sip at a time makes me feel so much more normal.
      I'm eating around 500-700 calories a day, and have hit my second stall. I have begun to only weigh myself once a week. I've made to the gym twice since surgery, but I've been walking my pup and walking at work up to 3 miles a day on average.
      I've also been using resistance bands and stretching. I'm not quite ready for twisty yoga stuff yet. Or jogging. I did do a 10+ mile bicycle ride last weekend with a friend to a coffee shop where I had a cold decaf coffee with half and half. That was another activity that made me feel kinda normal.
      I'm still drinking one protein drink a day, trying to hit my goal of at least 60 grams a day. Today I got 72 in thanks to a cold G Zero with 10 grams.
      My abdomen is still a bit sore in general. The way I understand it, the inside is not fully healed until 3 months after surgery. That means sometime around November 1st. This is when I will go on the forever way of eating according to my provider's plan. I look forward to that day.
      Oh! And I should mention that I learned about a chain restaurant that is in about 30 or so states. It is called Clean Eatz, and they have a menu that is friendly to we bariatric patients. My support group last night talked about getting pizza and flatbreads from there. I checked it out and it looks like it's both eat-in and takeaway. This is the first place I'm going when I feel ready to eat out again
      · 0 replies
      1. This update has no replies.
    • BlSm12

      Does anyone know, how long it takes for Medicare to approve surgery?
      · 3 replies
      1. aravenclawrebel

        I think it depends entirely on what guidelines you're being referred under. I had that kind of insurance through the state as a low-income person for 10 years and even though I was over 400 lb for 10 years they denied me. All based on the fact that I did not have diabetes. I switched insurances once I was offered a different kind of coverage from work and was approved within two months

      2. New To This23

        Medicare or Medicaid?

        They both have a serious of hoops to jump through before you can meet the surgeon. After you meet the requirements and as long as you do not run into any gatekeepers, the surgery will be okayed by your insurance pretty quickly after the surgeon clears you. One other consideration is when the clinic will actually schedule you for surgery THAT can take awhile depending on how backed up they are.

      3. New To This23

        *series on serious

    • NickelChip

      I got a little bag of samples when I saw the nutritionist last week. Turns out I much prefer the Celebrate 45 Tropical Twist vitamins to the Bariatric Fusion orange flavor, so I've placed an order for those and the sweet treat assortment of calcium soft chews, which were almost dangerously tasty. The Unjury chicken soup was better than the other brand I tried, but not enough to buy it. And their vanilla shake was vile. I just can't do artificial sweeteners, and probably not vanilla unless I add something to it to mask the flavor. The aftertaste was so strong and I had a vague impression of drinking baby formula. So far the only ones I've really liked have been the orange and peach flavored Syntrax Nectar Naturals, so I'm going to get two vegan fruit flavored options in case I have trouble with whey after.
      · 0 replies
      1. This update has no replies.
  • Recent Topics

  • Hot Products

  • Sign Up For
    Our Newsletter

    Follow us for the latest news
    and special product offers!
  • Together, we have lost...

    PatchAid Vitamin Patches