Hi from Ireland 🇮🇪 😊 so glad i found you 💗 I've been recently diagnosed, since April. Trying to come to terms with it. Feeling isolated, grieving a bit..watching your videos has really helped. Like you, earache started last night and I'm now in the middle of a flare. On Tegratol liquid so I can measure 150mgs. I just couldn't function on 200mg tablets. Thanks again for being so open & sharing your experience, it is really helping me xx
hi, my mom has be dealing with this for about 4years or longer now. she had the bloon precedure done but, was not a success for her. it is so hard to see people you love go through so much. sometimes i think people don't understand what it feels like. sometimes i see her cry . she trys not to let anyone know this. i wish i could take all her pain away. she watches your video's a lot. only ones that have this understands. i pray for you and all the others that go through this. may god be with yall all the way.
I've traveled quite a few times from US to Europe prior to MVD, and as long as I wore Ear Planes (basically ear plugs) to combat the change in pressure during takeoff and landing and pretend chewed, I had no difference in pain. I also took a bit more med dose prior to the trip as well as brought lidocaine and benzocaine along just in case. I also made sure I rested rather than watched movies onboard and took a moldable neck pillow as well, big saver. Easier to air travel for me than on land travel sans train trips.
@@pra546 My MVD resolved my pain to this day, thanks to my amazing and very experienced neurosurgeon. I had zero complications and side effects which again I attribute to my neurosurgeon. I only suffered from a headache for about a day which was treated with Tylenol and a lot of fatigue which went away in a couple of months. Much better than medication.
Hi Niry, All you videos so helpful🙏thank you. I swish with coconut oil to soothe my mouth, it’s very soothing ( spit in garbage not to clog sinks). Take good care🙏.
Hi Niry, Very helpful 🙏God bless us all. I was wondering if neck pain is part of Trigeminal neuralgia? I was prescribed a low dose of gabapentin ( less side effects) everyone is different . Take good care .
Thank you very much. You did fly and you went swimming. I so miss swimming and am going to try it soon in the pond up north at our trailer. Did i hear you say you are not on meds? Be well and hope you have a good day.
I’ve had it for 4 months now, and my symptoms have started out mild, been a bit worse here and there, but then mild again. It’s so gaslighting, and I wish I could just either have it go away for good, or get severe already, so I can treat it. I should be grateful that it’s so mild still, but it’s so hard to know if it’s going to get much worse, and if I should bother making future plans based on how mild it is this month or not. I got a prescription for 100mg gabapentin a few weeks ago cuz I was starting to have bigger shocks, and took it once, but then my symptoms have almost gone away randomly, so I haven’t had to take it again, which is great, except I have a trip to Disney World in July, and I am worried the symptoms will get stronger, and I won’t have enough time on gabapentin to build up enough of the medication in my system, then the trip will be ruined. On the other end, I hope symptoms don’t affect me at all for the trip, as I feel it’s probably the last time I will get to ride roller coasters with having this diagnosis ever again, assuming my symptoms are triggered hard by them later. I dunno if they will even trigger my more mild shocks hard and make them much worse too. As if I didn’t have enough anxiety about the unexpected before getting diagnosed with TN 😅 UGH!
@@Letsfaceittogether Oh totally, I actually started getting more hypoesthesia on my face yesterday, and usually that means I’m going to start getting a flare again, and sure enough, after complaining about it here lol, TN has reminded me that it’s definitely still gonna be a thing for me, and won’t simply allow me to wish it away.
Can I ask you if you had any pain in your TMJ up by your ear when it first started? I also have pain in my lower jaw. It feels like a pulled muscle or gets worse when I clench. I feel it coming on every night, last about 45 minutes. Did yours feel like that? Don't know if it's the tooth or not. I have bad health ins and not getting good answers from dentist. Thank you.
Yes pain in and around the ear is common for me. As well as the lower jaw. When I lay down at night that was actually the best time for me, the pain was less at night time
@@user-cw5yr5ew8o yes I’m sure it’s TN, if you look back over my channel, you will see lots of other videos where I describe the different pain I’ve been through.
avoid planes at all cost :( i was on a short flight before i got the mri to prove i had tn and i felt like my head was going to explode, the whole 1.5 hours then for 3 days after i had the worst head ache. the meds i had was carbamzipe but i got kidney stones and was in the hospital twice :( then my family went to Florida and the fight home i had to be in a wheelchair and the pain was so bad i was saying i just want too die:( tm sucks we need a cure.
Hi it’s so nice finding your channel. I was diagnosed a week ago after 6 weeks of the worst. I was bit in my neck by a fire ant which caused me to go into anaphylactic shock for the first time in my life. The left side of my face blew up to the point of no return. My ear gone it was so pushed back from the swelling. I thought my ordeal was over after going to er and getting epi pen and all that then all this started. I was diagnosed a week ago and put on baclofen and amatriptyline which I seem to be doing better. The pressure is better and pin and needles and sharp pain radiating seems to be better. I am just sad realizing this isn’t a cure all but something I might live with forever. I have my mri coming up soon and don’t know if I want them to find something or not. I’m Truly just so sad right now regarding all of this.
It's a struggle at first when you are coming to terms with it. But things can improve. Check out all my videos, and you will see the long journey and bumpy road I've been through. Just take one day at a time.
@@Letsfaceittogether thank you so much for your kind words. Yes I will watch all your videos on this. Today my face is super tight feeling for the first time since starting the meds last week. Which has me concerned. But it was the pressure that put me over the top and thankfully that’s not came back.🥰
Hi from Ireland 🇮🇪 😊 so glad i found you 💗 I've been recently diagnosed, since April. Trying to come to terms with it. Feeling isolated, grieving a bit..watching your videos has really helped. Like you, earache started last night and I'm now in the middle of a flare. On Tegratol liquid so I can measure 150mgs. I just couldn't function on 200mg tablets. Thanks again for being so open & sharing your experience, it is really helping me xx
Hi there. I'm really glad 😊 it's helping you not to feel so alone. It's very hard in the beginning to accept things. Ireland is truly beautiful
hi, my mom has be dealing with this for about 4years or longer now. she had the bloon precedure done but, was not a success for her. it is so hard to see people you love go through so much. sometimes i think people don't understand what it feels like. sometimes i see her cry . she trys not to let anyone know this. i wish i could take all her pain away. she watches your video's a lot. only ones that have this understands. i pray for you and all the others that go through this. may god be with yall all the way.
It is very difficult to watch others with TN and not be able to help. But I'm sure your mother values your understanding and support.
I've traveled quite a few times from US to Europe prior to MVD, and as long as I wore Ear Planes (basically ear plugs) to combat the change in pressure during takeoff and landing and pretend chewed, I had no difference in pain. I also took a bit more med dose prior to the trip as well as brought lidocaine and benzocaine along just in case. I also made sure I rested rather than watched movies onboard and took a moldable neck pillow as well, big saver. Easier to air travel for me than on land travel sans train trips.
That's really useful info 👍 thank you. There's a few things here that I can try if I'm brave enough to fly again
Just would like to know how was your MVD? How are you feeling after MVD? Is the TN pain gone? Are there any side effects?
@@pra546 My MVD resolved my pain to this day, thanks to my amazing and very experienced neurosurgeon. I had zero complications and side effects which again I attribute to my neurosurgeon. I only suffered from a headache for about a day which was treated with Tylenol and a lot of fatigue which went away in a couple of months. Much better than medication.
Hi Niry, All you videos so helpful🙏thank you. I swish with coconut oil to soothe my mouth, it’s very soothing ( spit in garbage not to clog sinks). Take good care🙏.
Hi, that's good, I'm glad they are helpful
Hi Niry, Very helpful 🙏God bless us all. I was wondering if neck pain is part of Trigeminal neuralgia? I was prescribed a low dose of gabapentin ( less side effects) everyone is different . Take good care .
Thank you very much. You did fly and you went swimming. I so miss swimming and am going to try it soon in the pond up north at our trailer.
Did i hear you say you are not on meds?
Be well and hope you have a good day.
I am on meds. Just not as high a dose as I used to be. I didn't try swimming for a long, long time. So it's all little steps along the way
I’ve had it for 4 months now, and my symptoms have started out mild, been a bit worse here and there, but then mild again. It’s so gaslighting, and I wish I could just either have it go away for good, or get severe already, so I can treat it. I should be grateful that it’s so mild still, but it’s so hard to know if it’s going to get much worse, and if I should bother making future plans based on how mild it is this month or not. I got a prescription for 100mg gabapentin a few weeks ago cuz I was starting to have bigger shocks, and took it once, but then my symptoms have almost gone away randomly, so I haven’t had to take it again, which is great, except I have a trip to Disney World in July, and I am worried the symptoms will get stronger, and I won’t have enough time on gabapentin to build up enough of the medication in my system, then the trip will be ruined. On the other end, I hope symptoms don’t affect me at all for the trip, as I feel it’s probably the last time I will get to ride roller coasters with having this diagnosis ever again, assuming my symptoms are triggered hard by them later. I dunno if they will even trigger my more mild shocks hard and make them much worse too. As if I didn’t have enough anxiety about the unexpected before getting diagnosed with TN 😅 UGH!
I guess you will have to take one day at a time, because it can be so unpredictable.
@@Letsfaceittogether Oh totally, I actually started getting more hypoesthesia on my face yesterday, and usually that means I’m going to start getting a flare again, and sure enough, after complaining about it here lol, TN has reminded me that it’s definitely still gonna be a thing for me, and won’t simply allow me to wish it away.
Can I ask you if you had any pain in your TMJ up by your ear when it first started? I also have pain in my lower jaw. It feels like a pulled muscle or gets worse when I clench. I feel it coming on every night, last about 45 minutes. Did yours feel like that? Don't know if it's the tooth or not. I have bad health ins and not getting good answers from dentist. Thank you.
Yes pain in and around the ear is common for me. As well as the lower jaw. When I lay down at night that was actually the best time for me, the pain was less at night time
@@user-cw5yr5ew8o yes I’m sure it’s TN, if you look back over my channel, you will see lots of other videos where I describe the different pain I’ve been through.
avoid planes at all cost :( i was on a short flight before i got the mri to prove i had tn and i felt like my head was going to explode, the whole 1.5 hours then for 3 days after i had the worst head ache. the meds i had was carbamzipe but i got kidney stones and was in the hospital twice :( then my family went to Florida and the fight home i had to be in a wheelchair and the pain was so bad i was saying i just want too die:( tm sucks we need a cure.
Sorry it was so bad for you when you took a flight. At least you know now that it's a *no* for you. Others, of course, may manage it.
Hi it’s so nice finding your channel. I was diagnosed a week ago after 6 weeks of the worst. I was bit in my neck by a fire ant which caused me to go into anaphylactic shock for the first time in my life. The left side of my face blew up to the point of no return. My ear gone it was so pushed back from the swelling. I thought my ordeal was over after going to er and getting epi pen and all that then all this started. I was diagnosed a week ago and put on baclofen and amatriptyline which I seem to be doing better. The pressure is better and pin and needles and sharp pain radiating seems to be better. I am just sad realizing this isn’t a cure all but something I might live with forever. I have my mri coming up soon and don’t know if I want them to find something or not. I’m
Truly just so sad right now regarding all of this.
It's a struggle at first when you are coming to terms with it. But things can improve. Check out all my videos, and you will see the long journey and bumpy road I've been through. Just take one day at a time.
@@Letsfaceittogether thank you so much for your kind words. Yes I will watch all your videos on this. Today my face is super tight feeling for the first time since starting the meds last week. Which has me concerned. But it was the pressure that put me over the top and thankfully that’s not came back.🥰