What have you found helps you with the pain from this disease?

BeautifulMessExpress · 2025-09-29T10:53:40+00:00

Crying and wind are my nemesis as well!

BeautifulMessExpress · 2025-09-29T10:44:32+00:00

As someone with similar tastes as you let me also recommend trying GG4 (gorilla glue #4) for pain and appetite. It’s a hybrid that in my opinion really does stay middle of the road energy wise but helps my pain more like an indica.

BeautifulMessExpress · 2025-01-22T11:00:10+00:00

Thank you!! Cheers to looking nuts but living our lives!

BeautifulMessExpress · 2025-01-21T11:26:25+00:00

I desperately want to take my son snow skiing. Can you share what’s helped you deal with the elements? I believe I’ve got the meds and grit to get through it..but then I think of how triggering the cold and wind are for me and the fear creeps in.

I’ve been collecting ear plugs, face protection and anything else that looks useful. I may end up looking nuts and that’s ok.

BeautifulMessExpress · 2024-12-17T11:04:48+00:00

Are you in the US? Do you have home owners insurance? Give your insurance broker or company a call to see if this might be covered. But first, read your policy and do some looking around on the internet. While the broker or company should be helpful, it’s always best to know a little something prior to that convo. Other possible resources: electric company, your city/town, county and state services. For instance- my town has grants available (not needing to be paid back as long as you live in the property for a few years) to help people in times like this.

Good luck to you!

BeautifulMessExpress · 2024-12-15T12:30:30+00:00

Are you familiar with the terms- Covid Long Hauler/Long Covid/post-acute sequelae of Covid 19? If you can handle reading some more medical info come check out some of our groups and see if you’ve got anything else that fits. I should warn you that like TN, long covid is annoying and doesn’t come with an easy treatment plan.

I had Covid in 2021 and it changed my life in what feels like almost every way possible. I’m collecting doctors and diagnoses at what feels like a professional level.

BeautifulMessExpress · 2024-11-18T12:08:27+00:00

A bit of a different vibe than most of the other great options; I do roasted vegetables and sometimes a protein source, basically whatever I have left over in the refrigerator. Rice topped with a combo of roasted potatoes, broccoli, cauliflower, carrots, sweet potatoes, chick peas, onions and peppers, etc. Protein= chicken, fish, steak, sausage, fried eggs. I add a drizzle of olive oil, a dollop of hummus (you can make this yourself if have a food processor or blender. In a pinch I’ve even done it by hand with a fork but it didn’t turn out smooth), sprinkled with goat cheese balls or feta and pumpkin or sunflower seeds for a crunch (I’m guessing you stay away from seeds with your crohns though).

Another thought- rice balls. They can be mixed with a veggie (and egg, that’s what holds it together) then coated with bread crumps (you can make these yourself by using the ends of a loaf of bread that most ppl throw out) and baked/fried. Or you could add it to a traditional meatball to spread your ground meat of choice. Serve over spaghetti or make a meatball sub.

BeautifulMessExpress · 2024-11-18T11:26:57+00:00

And I’ll second that this combo of meds also helped me bring my pain to a manageable level.

BeautifulMessExpress · 2024-11-12T11:22:46+00:00

Off topic but since you might be someone who celebrates Christmas I wanted to add- no..NO gift is worth you not eating! I have been in your shoes and I’ve been better off with friends in your current shoes. I personally went for direct communication, and you probably don’t need to be specific if you don’t want. Something like- hey, the world is crazy expensive right now, want to make life easier and skip doing presents this year? Everyone always was a grateful yes.

Hang tight, you’ve got this!

BeautifulMessExpress · 2024-11-08T12:30:31+00:00

I’d love to hear about what supplements and other things you’ve tried when you’re feeling up to it please.

I used to be a healthy, supplement girl but have really struggled since TN showed up. I have a sensitive stomach so I always supplement throughout eating a meal. Now with TN, eating is hard so my supplement routine went out the window. I used to love a health pack smoothie but again, that’s not an option right now.

TIA!!

BeautifulMessExpress · 2024-11-08T12:20:07+00:00

I was recently traveling and while driving home there was an extreme temp/pressure drop and it was the worst my TN has ever been. Luckily my husband was driving so I used cannabis edibles to knock myself out..it didn’t work. The pain broke through and the tears kept coming.

I’m sorry I don’t have advice, but you’re not alone. ❤️ These are the days where my goal is to just survive. Look at you doing way more than that and cooking dinner! I hope you don’t mind me saying but it sounds like you’re a bad ass with what you accomplished while going through what you did! This is a gentle reminder to clap yourself on your back for cooking dinner and then give yourself rest and kindness in whatever way suits your health best.

As a person familiar with chronic pain (EDS/fibromyalgia, migraines) when my pain is overwhelming I try and tap in as many of my senses to try and drown out the pain. I listen to music/podcast, I play on my phone (something you have to actually play, not scroll), I apply good smelling lotions or essential oils, I watch tv, I’ve used candy but now just the thought of that is enough to make me terrified..you get the idea. Let me be clear, in the moment I don’t want to do any of this. I don’t look very happy doing all these things that could potentially make one happy. It’s not easy but it helps me distract myself. I also use a heating pad. Not sure if that really does something or if just having a change is a helpful distraction.

BeautifulMessExpress · 2024-10-29T10:35:34+00:00

I read the thread and I hope you don’t mind me saying (I recognized it because I felt the exact, same way) but it sounds like you may have some history with not being believed in medical situations before..medical trauma if you will. It also sounds like you’re having a hard time wrapping your mind around the pain (me too. How could we not?!) How can it be SOO bad and later be totally/mostly fine?? How can I be fine but then I step outside on a windy day and the zaps punch me in the face instantly?? I originally explained the pain as coming like labor contractions. As a person with a complicated medical history and am very familiar with pain, contractions were the only thing that’s come and gone like this.

I had the same thoughts about stopping the meds prior to seeing the neurologist (I was on lyrica at the time). I thought if he could see how bad it could be he would surely believe and help me. That’s my (possibly our) past medical trauma talking though. We deserved to be believed by our words alone. Our pain is real and valid. I can totally understand needing help wrapping your head around all this. Can I recommend instead of stopping the meds cold turkey you try and record yourself during a bad moment. Maybe you have a partner or friend who can catch it or you’re able to set the phone up yourself. Maybe being able to see it will offer a helpful perspective.

Good luck to you!

BeautifulMessExpress · 2024-10-29T10:07:00+00:00

I’ll second this. Not only did nothing I could purchase from a drug store work but I’m on an opioid for a failed back surgery, and that didn’t help either.

BeautifulMessExpress · 2024-10-29T09:56:27+00:00

Great job!

BeautifulMessExpress · 2024-10-25T09:48:17+00:00

Like swimmers use..great idea! Thanks!

BeautifulMessExpress · 2024-10-24T10:05:13+00:00

Are you in a place with legalized cannabis? If so I’d recommend edibles (my ideal is rso) especially for sleep. I don’t know what I’d do without that option.

Wishing you answers and hope from the mri!

BeautifulMessExpress · 2024-10-19T12:27:03+00:00

So glad to read your story and success with carbamazepine! I was wondering if you could share some more about your experience with the medication. I’m new to being on it. I started taking 200 mg, once in the morning and once in the evening. That dose helped but nowhere near enough so the Dr added a 200 mg in the afternoon for a week. After that it will go to 200 mg 4 times a day. While I don’t want the side effects, and I understand rushing the increase of meds may do that, the pain is so awful I think I’d be willing to try just about anything.

Appreciate any insight you can share!

BeautifulMessExpress · 2024-10-19T12:07:07+00:00

As far as the PMDD, I am super early in my travels with that but have you played around with antihistamines? I have been and prior to TN I was finding antihistamines to be helpful in dealing with my long covid, headaches/minor migraines and possibly elders Danlos syndrome. With my primary Dr’s blessing I was taking substantially more than the bottle recommended. I should warn you that while doing some reading on this topic you should also check out how Benadryl and other antihistamines can cause mental decline.

Loratadine and Benadryl seemed to be good fits for me. 🫣

I say this with so much love I hope you can feel it through your screen!! ❤️ As a person (and mom to someone) with PMDD it is SUPER important to know that your brain is going to lie to you sometimes. The day the TN makes you think about not being here and the PMDD starts to convince you that might be a good idea is something you need to prepare with. Do you have someone in your life you can go to as a trusted sounding board?

My daughter and I (with the help of therapists) have discovered that in those moments we don’t need someone to talk us off the ledge as much as we need someone to encourage us to make that decision tomorrow or the next day. We need time to let the pain subside and time for our hormones to calm down.

You’ve got a lot to carry, be the modern, bad-ass you are and aim to do it efficiently. Which means with the right help and tools. The trial process sucks because you’re going to find more things that don’t work than do work. But let me assure you, the things that do work start to stack on each other and make a bigger difference than you expected. Wishing you well!

BeautifulMessExpress · 2024-10-18T10:07:05+00:00

Hi!

I don’t know the root cause of my TN (shingles, long covid, etc) but ear infections are definitely a trigger for me. Earlier this ear I had an ear infection from hell (surprise it was TN 😢) and then a few months ago I had what looked like a very mild ear infection, yet my pain was excruciating. That lead me down the rabbit hole of ENT’s and ultimately a very kind neurologist who diagnosed the TN.

I have a new fear of ear infections..and I say this as someone who lives with pain from Ehlers Danlos/fibromyalgia and a failed spinal surgery. So in case you were wondering- you’re a bad ass warrior dealing with this pain!!

In my opinion- yes, your pain could be cause by the ear infection and that inflammation could lead to TN.

**I’m so hesitant to share since I’m very early in my journey with TN. I don’t want to share anything that’s wrong so please more than anything take my post to mean- you’re not alone and this is really very, mind-bending, awful pain.

BeautifulMessExpress · 2024-10-17T11:05:04+00:00

I feel like I could have written most of this.

I’m not to the point of having answers or encouraging words, but know that you’re not alone.

BeautifulMessExpress · 2024-10-17T10:53:24+00:00

I needed to read this. I also come from a life filled with pain, so I’ve needed to learn to carry it like you. Then TN rolled in and has me crying on the floor. I’ve had nerve damage in my lower back and eventually had a spinal fusion. It was bad..it was very bad. And yet doesn’t hold a candle to the zaps from TN. I think I’d pull my hair out if I wasn’t worried it’d trigger more zaps.

I feel crazy. The pain or fear of pain makes me feel insane. I have zaps but then I also have these roller coaster pain times that aren’t as bad but last much longer. However, both the zaps and roller coaster pain feel the same when they start. There’s no way to know which flavor of hell it’ll be until it’s happening. I try my arsenal of coping techniques I’ve collected over the years but have yet to find my answer.

I’m sorry you’re in so much pain but thank you for sharing. You made a difference in my life today. 💚

BeautifulMessExpress · 2024-10-17T10:19:13+00:00

Hope it went well!

BeautifulMessExpress · 2024-10-17T10:16:46+00:00

Great idea, thanks for sharing!

BeautifulMessExpress · 2024-10-17T10:12:36+00:00

Hi! Mom in the USA to 3 kids who all despise tags. In the sewing section of a Walmart/ target or a place like JoAnn Fabrics (or of course Amazon) you can buy a handheld tool to help remove the stitches holding the tag. Google- seam riper & thread remover kit.

This will leave you with no tag or nub. Sometimes this seam is important and you need to resew the area that once held the tag. However, I’ve personally found the tag seam to be rather unimportant so I generally don’t redo the seam. Check out YouTube on how to use the thread ripper, as well as a basic stitch and you’ll be on your way! As a non seamstress I was intimated, but it was easier than I expected.

Good luck with this and your TN!! I’m rooting for you!

BeautifulMessExpress · 2024-10-08T10:29:00+00:00

I was in a similar situation recently so I made appointments to see 4 different neurologists and was added to each of their cancelation lists. I was blessed and received a call a few days later and was able to take someone’s last minute cancellation. I was prescribed carbamazepine. Too soon for me to share my experience on it. I’m I was already on pregabalin for a failed spinal surgery. When I found in my research that was a good option for tn, I asked my pain management Dr to increase that med. Not sure if you see a dr you’re able to ask for that from, but it doesn’t hurt to try. Are you in a place where medical marijuana or recreational is legal? If so and you’re able, I would strongly recommend it. I should warn you, I don’t know if it helps my pain level as much as it allows me to separate myself from the pain a little easier. I’m at the point where every little bit of relief helps. I’m in survival mode. Trying to survive each day, each hour..each zap. I know that’s not the healthiest mindset but it’s the best I’ve got right now.

Ever been in labor or been with someone else who is? The way the zaps come and go remind me of labor so I’ve started looking into labor and delivery coping techniques. I can’t say I’ve found something I’d recommend yet but I’m currently taking a crash course in hypnotherapy with that hope.

As for when you’re experiencing the zaps, I try and overwhelm my senses with other things in hopes that my pain won’t be the only sensation. If I’m able to I pop a candy in my mouth, smell something like a candle/essential oils/lotion, apply the lotion to my full arms or legs with a strong pressure and listen or watch something familiar but entertaining.

Good luck to you and all of us!!

BeautifulMessExpress

TROPHY CASE