Living with trigeminal neuralgia | flare ups & depression | referral letter

[@Letsfaceittogether]

This includes my story kzbin.info/aero/PLSnPo5DuTBNAJXJ8WJKw6eIhET5pnb4Yp

[@janetpaul3744]

Hello, as a background I have Lupus, Sjögrens and have had pulmonary embolisms, diabetic, Afib, hypertension and other things. I was glad to find your video. I am facing a similar disease diagnosis. I have had a migraine quality headache/facial pain for nearly a month. I had nasal surgery back in November ‘22 so I thought the pain was related to the surgery because the pain started in my upper face on the left side of my nose and in my left eye and then extending across my face to my ear and my jaw and up to the temple. So went to my ENT and she scoped my nose and said that there was nothing blocking and the surgery sight looked good. The surgery was for septoplasty, turbonate reduction and remove a septal spur. Then the ENT said “Well you know you have Sluder Syndrome”! I was like what!! Had never heard of it. It is also called sphenopalatine neuralgia. Characterized by unilateral headache with pain in the eye, upper jaw, the back of the nose, the teeth, temple, the occiput or the neck. I have pain in all these places for at least a month. My regular migraine meds were not working and I am having to double up on them. I saw my neurologist and he has ordered an MRI w/contrast and a venous MRI as I had Giant Cell Arteritis about 4 years ago and was in hospital on high doses of steroids. I am having a flare for 3 days with new facial areas of pain. Am feeling very unwell and am not able to do the things I normally do! And I hate taking pain med during the day, it makes me sleepy and out of it. On top of this all this stress has triggered a Lupus flare so every joint in my body hurts! Have a call in to my rheumatologist to increase my prednisone. Thank you for sharing your story! I know it is hard to do that. I believe in prayer and will be praying for you!!

[@Letsfaceittogether]

Wow, those are so many things you have been through. Thank you for supporting my channel. I hope things improve for you

[@carolashburn274]

Thank you for sharing what you have been going through. I love that prayer. I wish I could have a written copy of it. I am seeing a neurologist, had the MRI and doc says it shows no cause for my right side facial pain / numbness. I am scheduled to meet the neurologist on 7/28/23. I am gathering questions etc. and need to find a medication that will help. I need to know what the diagnosis is (I think it is TN). I am in the USA and currently things run slowly in the medical system these days. Prayers are so important in keeping my sanity as being in medical limbo is difficult. Thanks for sharing your story.

[@Letsfaceittogether]

The medical limbo is so unsettling. Sometimes, there are no clear results, but responding to TN meds is the best indicator. Absolutely agree with you about prayers!!

[@christineconacher2827]

Hello Nyree, I’ve never actually commented on a KZbin video before (or any other social media platform for that matter), but I felt compelled to comment here. I, too, am newly diagnosed with TN ( Type 1) in January of this year, and I can understand much of the “journey” as well as the pain you describe-literally. Likewise, I, too, am trying to navigate my way forward (in the dark) whilst being very aware that I’m no where near the “top of my game” mentally due to the ever-present carbamazepine fog. It feels like a very precarious situation to be in. I actually believe that I spent the first few months “in denial” so to speak, and like you, find myself confronted with these new very frustrating, almost unbelievable, and destabilizing set of circumstances. I also intimately understand the loneliness and despair brought on by TN. The idea that there’s really no one who can offer you ready relief for a pain which defies description is a very lonely feeling. I believe Canada (where I live) has a similar health care system to the U.K. So, I, too, have been on the merry-go-round of doctors appointments (dentist, G.P., ENT, neurologist, and most recently, insisted upon a referral to a neurosurgeon…I am waiting for that appointment date.) Unfortunately, there aren’t a lot of answers, and I’m very frustrated with what seems to be an endless medication protocol until the medications no longer work! To me, that is no strategy. Overall, it’s as you describe… a frustrating, lonely, and painful journey. Please know that you’re not alone- even if it feels that way.🙂

[@Letsfaceittogether]

So honoured that you took the time to comment here x It's very very therapeutic to know there are others out there that completely identify with my story. The endless merry-go-round struck a cord with me. Thank you for your encouragement 😊🙏

[@LadyBoBannon]

I just found your channel. Thank you for sharing your experience. I haven't been diagnosed yet but I'm just starting my journey because I started feeling this pain in September. I'm not a Christian but the prayer is still meaningful. Much love to you ❤️

[@Letsfaceittogether]

Much love to you too...its very hard when you first start on this journey. But things can stabilise. I hope my videos really help you 🙏

[@TheGatewayProductions]

Many thanks for this upload! Depression is devastating but we can crush it!

[@Letsfaceittogether]

Yes, it is, and still not talked about enough. Thanks for your support

[@mary-lou7746]

Ive just found you im so thankful ive come across your channel could I ask where abouts you are im in the uk too im currently going thru this ive been to my dentist 7 times gp 8 times & loosing hope the neurology keep saying i have clusters migraine gp and dentist saying i have trigeminal neuralgia and i was put on cabmizpime but i had an allergic reaction 😢. My pain started with left side buring under my eye & electric shock pains in my mouth teeth jaw and head each time it gets Worse im not sleeping not eating im loosing hope neurology keep wanting to treat me with botox for cluster migraine.

[@Letsfaceittogether]

yes, I’m in the uk. There are other medications that you can go on other than carbamazepine. It’s a classic where professionals don’t agree! Maybe ask to try a new medication. I hope things work out for you, but don’t give up fighting xx

[@mary-lou7746]

@@Letsfaceittogether thank you I have my 8th gp appointment next week 🙏

[@michelinefavreau5360]

Your experience with TN is comparable to mine, waiting, doubting, dépression . After 4 years , i will be treated with a gamma knife surgery in a university hospital located in QUÉBEC/CANADA. . An experience neurosurgeon was able to see and show me were a blood vessel is pressing on the trigeminal nerve and the gamma knife is targeting just this area . If you are interested .U TUBE has several videos on Gamma Knife surgery for TN . GOD BLESS YOU

[@Letsfaceittogether]

I'm so glad you found a way forward. I hope it really helps when you have the surgery

[@debvoso9490]

Love you from afar North Carolina Your new TN friend

[@Letsfaceittogether]

Thank you Deb, great to have you here! My journey in TN has developed...from this starter video.

[@sharonminnaar4471]

Thanks

[@Letsfaceittogether]

You are welcome Sharon

[@michelinefavreau5360]

❤

[@dinifeli1046]

On a scale of 1-10 how much was your spain when you started?

[@Letsfaceittogether]

I would say about a 7

[@debvoso9490]

Are you a member of Facial Pain Association FPA Request a neurologist pain management team Dentist may know what you have but cant help you

[@Letsfaceittogether]

I follow them on Facebook...but I'm.in the UK so nit too sure how a request would work? Thank you for watching ♥️