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Introduction & request for help

Sep 10, 2019 10:26 PM

Hi All,

My name is Katie, I am 33yrs old, living in Brisbane (Australia) and am currently diagnosed as having Trigeminal Neuralgia. I am having a Brian MRI tomorrow to rule out anything else causing the excruciating pain I am feeling in my left jaw. I've had the pain for 4 days now and I can see why this illness (?) is known as the suicide disease because this is awful.

I was wondering if anyone here has TN or any suggestions on what I can do in a flair up of nerve pain? I've started medication but still get a flair up and heat packs don't cut it!!

Any advice would be greatly appreciated please. πŸ˜€

Sep 11, 2019 6:03 AM

Hi katie I don’t have that but you do have my prayers. I hope they figure it out what it is for you .
For me I have back pains leg so spasms at times . I am have therapy for my right side back then a Rhyitzotomy soon after right and left side .
But if you ever herd to chat I would ))) Hug gently ShoreπŸ¦‹πŸŒˆπŸ™β€οΈπŸ€—πŸ‘

Sep 11, 2019 7:34 AM

Welcome to the community Katie. I'm sorry you have chronic pain. I don't have TN but there are people here who do. You can scan through the older topics and might find what you are looking for.

Sep 11, 2019 2:48 PM

Hi am kayleigh also 33 trigeminal too but it's too over all the left side of my head I live in pain all day every day
It's becoming very hard for me to balance things as am a single mum and I hate it its made me feel depressed lonely and very isolated it's also taken over over nerves in left side

Sep 11, 2019 4:39 PM

Thank you Shore and Animal lover.

Kayleigh, I am sorry to hear your pain has spread. This morning I am feeling it in my head and I cannot take anything as I have my MRI soon.

Have you found anything that helps?

Sep 11, 2019 10:01 PM

Hi Katie~ I am also new here and haven't posted yet. I do not jave your health issues, but I feel for you. I am in constant non stop pain 24/7 myself and there are days I feel as if I can't take this pain 1 more second. I'm suffering from totally different problems, but pain is pain is pain. It's awful and unfortunately I've had it for almost 8 years now. I recently had a spinal cord stimulator implanted for pain. It works for some and not others no matter where the pain is. Since I'm unfamiliar with your diagnosis, Idk if that's helpful to you or not. I wish I could give advice to you except just hang in there and hopefully Drs will be able to relieve your pain soon. {{Hugs}}

Sep 12, 2019 1:00 AM

Hi kt no nothing sames to take pain away I've tried different meds and different methods too but nothing helps am waiting on hospital appointments but they feel like forever to come
Hope you get some more help today tho

Sep 12, 2019 1:32 AM

Thanks Cindy. Sending you lots of love too! X

Kayleigh, I survived the MRI. Valium seems pretty amazing as I wasn't inpain for the hour I was in the machine, maybe it was the pressing on my face though?! Now to wait for the results. 🀞

I'm sorry to hear nothing medicine wise works. Hopefully you can see someone at the hospital soon and perhaps there is a surgical solution? X

Sep 12, 2019 7:12 AM

Hi πŸ‘‹ KT I had injection in my back long time ago and Valium sure helped me out . Now I’m therapy and getting ready for Rhyitzotomy in October sometime.
I’m really nit looking forward to that . Bc. They said I would get Iv Sedation . Nervous about that one...
I hope that you figure thing out for you guys )) btw I’m Shore hug gently πŸŒˆπŸŒˆπŸ™β€οΈπŸ€—

Sep 12, 2019 10:05 AM

Welcome to our community Katie! Though we all suffer from different causes, we all understand chronic pain and the frustration of trying to learn the causes & coping methods.

I have a long list of issues that cause chronic pain. I was 36 (1997) when I developed TN, following a major slip & fall, which caused my head to slam against the cement floor twice. They wouldn't actually say the fall caused it (I believe the company I worked for paid the doctor... Long story but let's just say I learned all about patient rights too late!). Anyway, sometimes my TN is just around my eye and temple on the left side, and at other times it encompasses the whole left side of my head as well as my mouth, nose, & forehead, and goes over my crown to the back left portion of the top of my head. Unfortunately they never found anything that would help relieve the sensations. I know that's disappointing, but it's been many years so maybe there are new treatments out there. I had the MRI & EEG tests.

Over the past 21 years I've developed other chronic neuropathy pain, due to other diagnosed issues (spine & fibromyalgia, migraines, cervicogenic headaches, etc). So even when the TN is acting up the neuropathy from my other issues make the TN symptoms less worrisome, and the pain from my TN is 70% less painful than the others most of the time. My TN has either declined in intensity and/or duration of symptoms, or the other chronic pain issues makes it less noticeable. There are 2 things that developed years after my TN, which seems to worsen my TN's actual pain (when acting up). One thing that intensifies my TN pain are migraine headaches, which started around age 42. I'm not sure the TN isn't what caused the headaches to start, because I noticed a few years ago that the TN tingling starts around my left eye & cheek first, followed by the actual migraine attacks. But thankfully my migraine medicine helps reduce the TN symptoms while also stopping the migraines. The second thing that only started affecting my TN 2-3 years ago has to do with multiple issues going on in my cervical spine. I can tilt my head towards my left shoulder, or look up or down too long, and suddenly I can feel the tingling start from the TN all around my left eye. I've actually wondered if the TN was the precursor to my migraines and/or my fibromyalgia neuropathy, or if the TN was caused by issues in my spine from the fall in 1996, and the damage to my spine was not visible on the tests. I've also developed severe TMJ/TMJD, which came after the TN.

Either way, I understand what you are going through. And although I don't have any suggestions to help relieve the symptoms, keep track of any and all episodes & flares, so if anything changes or you notice a pattern (like I did when I realized the TN hits before my migraines), you can let your doctor know. Sending hugs love & prayers you will be able to find the cause and have treatment options that weren't available to me so many years ago! πŸ™‚β€πŸ™πŸŒΌ

Sep 13, 2019 4:20 AM

Wow Flappy, thank you so much for sharing your story with me. I am sorry you have been through so much!! Have you even looked into the autoimmune protocol? I am hoping to start it next week as there seems to be a correlation between nerve issues and autoimmune disease. I already have coeliac, so it's not a big jump for me.

My MRI came back clear (hooray!!) so no MS or tumors... So now I need to find a neurologist and look into my options (medical or surgical). X

Sep 13, 2019 6:01 AM

Hi KT congratulations hug Shore hug gently sending Prayers also πŸŒˆπŸŒˆπŸ™β€οΈπŸ€—πŸ¦‹

Sep 13, 2019 9:32 AM

Hi KT,
I'm interested in this autoimmune protocol you mentioned.
I have tried EVERYTHING I have ever come across to ease this pain and help with the fatigue and NOTHING has worked.
The thing that provides the most relief is either Oxycontin, or Valium - as you would know, the Dr's don't like prescribing either. Such a shame as I'd rather be using these drugs regularly than wanting to kill myself because I can't deal with this anymore.
Best of luck to you. I sincerely hope you find some relief.

Sep 13, 2019 1:05 PM

Katie, that's good news on the MRI! Are you talking about the Wahl's Protocol? I'm familiar with that one. Unfortunately my doctors all conflict on what I should or shouldn't be eating, due to so many issues in every organ system of my body. Having read other's experiences, and then my hubby turning diabetic, and seeing how some foods cause specific flare up to me, I eat more along the line of a diabetic & heart patient; reduced sweets & salt & zero fried foods. My hubby and I split one serving of meat at meals, and mostly eat seafood of poultry, but we can both go without meat (so long as I have nuts & he has cheese).

Sep 16, 2019 12:06 AM

Katie, welcome to our community. About 10 years ago, I developed TN. The pain was unbelievable! It’s interesting that you commented on how autoimmune system seems to be affected by the TN. I have autoimmune problems now (psoriasis to name one). Temperature seems to be a trigger at least for me. Heat never helped me any. Nothing I ever did helped relieve the pain except Percocet. I sure hope you and all the others who are suffering from TN can find out what’s causing it and get some relief. I haven’t had a problem with it for several years now but do have Peripheral Neuropathy that effects my nerves now. Wishing you pain free days. πŸŒΈπŸŒ»πŸ¦‹πŸ€—

Oct 02, 2019 5:18 PM

Please excuse my ignorance here, as I'm reading all the posts, My heart going out to each and every one of you.
But, what is TN?

I must admit I have not heard of it, but when your brain farts as much as mine! It's probably heard but not remembered.
Thanks lovelies πŸ’œπŸŒΈ

Oct 02, 2019 6:54 PM

Katie and Kaleigh. I don’t have Trigeminal Neuralgia, but I have had TMJ issues and pain for about 35 years, after hitting my jaw on a steering wheel in an accident at 19, resulting in chronic migraines, so was fitted with a mouth brace, similar to a retainer, which I got from a TMJ specialized dentist. I have a spinal cord stimulator implant which has surprisingly helped my TMJ most of the time. When it’s really bothering me, I use an ice pack wrapped in a towel against my jaw, like I do on my neck and back. It numbs the area and hopefully lessens swelling. Sometimes it’s only temporary relief, but I’ll take it! I hope this may work for you. Other than strong pain meds, medical grade ice packs are my best defense. Best wishes!!

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