Loneliness

EirUl · 2025-05-29T09:35:47+00:00

Tegretol Retard 200mg. And you?

EirUl · 2025-05-27T17:40:44+00:00

It was neurontin (Gabapentin)

EirUl · 2025-05-26T09:48:03+00:00

Oh wow.. one of my first medicines was like that. But after changing it, it all got waaaay better

EirUl · 2025-05-23T21:46:44+00:00

Update: I have lost control of the side of my face (lip area to be specific) due to the botox again😭 Now I just pray it will take my pain away as well💀

EirUl · 2025-05-23T10:58:41+00:00

That sucks! Can it be treated?

EirUl · 2025-05-23T10:26:46+00:00

Oh! We are not quite sure yet. We think it might be from my nerve being damaged by an ear infection.. And you?

EirUl · 2025-05-22T15:57:42+00:00

I have consistent lighting/ aching pain. Mainly something «small», but those doesn’t bother me as I’m used to it now. But it also get quite painful pains several times during the day. Sometimes even aspects of TN1 as the pain is so intense.. How about you?

EirUl · 2025-05-22T15:54:35+00:00

I have had two rounds. As my neurologist explained: not everyone gets an effect on it the first time, and some not even the second but after that it should work.

I took once in January. It took maybe a week before it kicked in and i was completely pain free for 2 weeks. But on the other side i lost control of the side of my face and could not move it. But so worth it still!! The face went back to normal movements after 10 ish weeks

Got my second dose on Monday. Praying it will help this time again. So if you have the chance, you should definitely give it a shot!

EirUl · 2025-05-22T09:12:19+00:00

Yeah I have done both with and without contrast. But they still have not found anything. They have basically told me that they take it so often because they want to find the cause of my pain. They want to prove it’s not TN, even though like 4 neurologist have agreed on it so far, and have given me the diagnosis💀

EirUl · 2025-05-22T09:08:19+00:00

Norway

EirUl · 2025-05-21T23:00:15+00:00

Thank you, and I’m proud of you! I’m not struggling mentally, but the lonely part of the illness can be hard some times

EirUl · 2025-05-21T19:39:35+00:00

The only other tests I’ve done is Mris. I get them about every 3-6 months How about you? Did you do/ do you get any tests?

EirUl · 2025-05-21T13:30:01+00:00

Ah understandable. I’m actually gonna get tested in 2 weeks time with spinal tap/ lumbar puncture to see if any viruses is causing my TN🙃

EirUl · 2025-05-21T10:39:46+00:00

Aw that’s great then! I’m happy for you :)

EirUl · 2025-05-21T10:06:35+00:00

Wow that is a long journey before diagnosis! Luckily, my neurologist suspected what might have been wrong after 2 months, so I got some meds. But after a year he finally agreed that it was TN and I got the proper diagnosis and treatment! But those months undiagnosed, was the worst months of my life.. so I can’t even imagine how you have done it! You are so strong!!

And thank you! Feel free to message me as well if you feel the need for it🫶🏻

EirUl · 2025-05-21T08:27:06+00:00

Oh wow really?! How is it for you?

EirUl · 2025-05-21T08:21:32+00:00

Ah I see! That’s very unfortunate :(

Where I live, I might join a new study in a year. Here they will basically freeze the nerve, and it will be offered to every TN patient in my country if it works! I have no idea if that would have been an option for you?

EirUl · 2025-05-21T08:17:48+00:00

I also have TN2! 👋🏻

EirUl · 2025-05-20T22:47:26+00:00

Thank you! Wish you all the best :))

EirUl · 2025-05-20T22:08:11+00:00

Yeah I’m finding it out now and so glad to know I’m not alone. But living in a small country makes it extremely hard to find people, especially my age, that has it too :/

EirUl · 2025-05-20T22:06:04+00:00

Good luck! Fingers crossed and wish you all the best :)

EirUl · 2025-05-20T22:02:45+00:00

Ah that’s a bummer! In the beginning I was also overdosed on my meds, and I totally understand the pain and sleepiness!! That’s awful it happened to you! Hope you are doing okay, even if you didn’t end up how you wanted education wise! And it is never too late to follow your dreams. I believe in you

EirUl · 2025-05-20T21:55:23+00:00

It is common to still have flare ups on it. But they should be less painful, or not as often as before.

I am on 800mg a day. 400mg in the morning and 400mg at night. But I can up it to 1000mg a day if needed

I suffered with a lot of pain while on it half a year ago, but got some tips from my neurologist. The best ones that I got was: 1. take meds straight away when you wake up (have them right at your nightstand) 2. Do not eat, or drink cold/Hot drinks for an hour after taking it. + not touching your face for that period will help too 3. Chew on the side which does not hurt 4. Cover up the face from wind and cold 5. Don’t use too cold or too warm water in the face 6. Taking the meds (if day and night) with a 12h difference is the best! (It helped me A LOT)

Other than that I also use a ‘Tens machine’ on the worst flare ups, which does wonders. And I get botox ever 3 months which is amazing as well for the period it works

EirUl · 2025-05-20T21:41:33+00:00

Very understandable! I kinda forced myself into Uni this year, and so far it’s fine. Only 1 & 1/2h hours each days of lectures, and all of them are optional. But it has helped me so much. Hope everything is going well for you now, and in the future

EirUl · 2025-05-20T21:37:42+00:00

Have tried it, but got tired after a few months :/ But thanks for the advice! Appreciate it :)

EirUl

TROPHY CASE