Thx for your video as I watch them all and can certainly relate to your anguish in dealing with TN. I completely agree with you when it comes to relating to others and medical professionals. After speaking with my neurologist what torture it was to brush my teeth she then prescribed a medication where it is advised to brush your teeth, floss and see a dentist all the time. I thought is she mad or what! I unfortunately can’t take medication as I reacted badly to several of them so I deal with unbelievable pain. I was on carbazmepine so I know how groggy it can make you feel. When I was on Lyrica I could have face planted in my dinner every night because of the fatigue brought on by the drug. Dealing with almost all people has become an incessant pain in the ass unfortunately. I wish things were different but only the people who deal with this disease are the ones to understand it. Let your person know your circumstances because she obviously doesn’t get it. I wish you the best of luck with it. Take care!
@Letsfaceittogether8 ай бұрын
Thank you Cheryl. Sorry to hear you have been having similar problems to me getting the message across!
@AquariusGirl277 ай бұрын
Yes l have T.Neuralgia plus full body severe Neuralgia pain that even drafts cause it to be worse, like T.Neuralgia, it’s so awful. I understand the pain from T.Neuralgia. 💭😖😩 I take Pregabalin.
@Hchristine8 ай бұрын
This is helpful. I have to return to work and I’m able to set my schedule, but don’t want to start to early due to grogginess. But still have to take some meds during the day so I don’t get a full pain flare. It’s going to be difficult but I’m glad I’m not the only one out there.
@Letsfaceittogether8 ай бұрын
You definitely aren't alone!!!
@AishaUsman-d6f3 ай бұрын
I’m on a 1000mg of carbamazepine, 400mg in the morning and 600mg at night, and TN is the worst thing that has happened to me. I love your channel because I relate and feel seen. I’m from Nigeria and would like to connect with other sufferers who are in Nigeria .
@Letsfaceittogether3 ай бұрын
I'm so glad the channel is helping you. It's a very isolating disease, really glad you found this little community
@melbourneausttours8 ай бұрын
I remember driving a bus a early in morning now I usually work in afternoon and suddenly flare up where I had to slow down driving. I recover learnt a lot from it. Take your meds when you get out of bed. Lots of love to all
@Letsfaceittogether7 ай бұрын
Yes, it can be scarey when things suddenly happen
@melbourneausttours7 ай бұрын
What I hate and I know what others have experience. I went to many surgeons. Some say nothing wrong despite the fact I am in hell. But I found 2 doctors who were able to say I need but I am scare to have the surgery. Ironically I had a customer on my bus who is a neurosurgeon I told him I had tn so send him my paperwork he got back to me told him I had tn his from Apollo hospital hyperbad. India
@CaderasKitchen7 ай бұрын
I take carbamazepine at 400 night and 300 morning i was on 800mg daily but i just couldn't function. I do try to go to 600 but the pain is awful.i cant work anymore . I had the worst flare up and i slept 24 hours . These medicines are a double edged sword . Functioning on these medicines and needing pain relief. I always need a nanna nap in the afternoon 😴 im 2 years in it has devastated my life . Im having to live around my TN now.
@Letsfaceittogether7 ай бұрын
I'm so sorry that this disease has hit you so hard. I hope things settle a bit for you and you can get a quality of life back
@OptimisticHominid8 ай бұрын
Groggy, oh yes! Fortunately, I don't have to work now, but if I still had to get up at 7 am, and drive for 45 minutes on dark winter roads, it would be immensely difficult and dangerous while on such medications. I hope the counselor is a little better informed now.
@Letsfaceittogether8 ай бұрын
Glad I'm.not the only one with this problem!
@melbourneausttours8 ай бұрын
Most days manageable with 2 medications a day but then their is those days where no amount of medication will help you. Just came off a four to 5 day flare up. Meds I took was gabapentin 300, palexsia, panadeine condeine 30 mg that last one made me sleepy
@Letsfaceittogether7 ай бұрын
I'm sorry to hear you've had such a bad flare-up recently. I hope things improve for you 🙏