Thanks for sharing your videos Nyree. I’m early on in my journey but have been reassured by your videos. Thank you. Mostly my struggles, aside from the pain, are trying to balance parenting 3 young children (2 of whom have special needs) and my up and down days. It’s a lot! Thanks for your community. It’s nice to not be alone. x
Hi, i have Also started to do childhood skills , so distracted a bit more . I have this issue for freaking 28 years now . I refuse to give up And feel sorry for myself . People dont and cant understand at all what we are going through. Wrap up warm And go our Doors And do your own thing go for that Bush walk or run. I cant even take meds seeing as my blood pressure Goes sky high, have landed up in IC fighting for my life a couple of times already. Good thing stay positief lovely lady xxx stay grounded
Then how are you dealing with it from 28 years and do you get sharp attacks means typical trigeminal neurlagia and how often you get attacks and your age now ??
@@iballslide7604 I go to a therapist Every singel week ( he us best , long waiting list ) And use a special cushion to sleep on. I have attacks Every day , its not easy to live with as you know yourself . Use vitamine B 12 , magnesium, fish oil and vitamin C . All in the evenings also use vitamine D 3. Apparently the omega oils are also good for muscles pains . The vit B 12 is good for the nerve pain and this you also know the two go together when having attacks . Morphine does not even help , it might take a bit off the edge . Due to all of this I hardly sleep . I try to stay positive. Stress is no good for us. I am heading on for 60 years old ( Taurus ) but still am young at heart . What do you do when you have attacks? How old are you? I hope this info might help you. Take care xxx
@@margaretpeelen3968 do you get any surgery or are you on medicines from 28 years and how are you dealing with it and is it typical or atypical one for you??
You are very inspiring Ive watched since beginning My right is in remission on right side by having a RFA But now have sporadic hits on left side Thanks for sharing
You just appeared tonight. Am nurse disabled by MG finally seeing improvement with med and no presumptive TN...he said no clear diagnosis and only had it 18mos. In US where invisible means imaginary. Already have payback with MG and too many times of raw survival but now with loose beanie over left side of face if windy,colder than 40F or bright sun. Good to hear am not alone
Hi 👋 I'm not medically trained, but I think you should go back to the neurologist to try a different medication. There are lots of different options out there. 🙏 hoping and praying you can get your pain under control
Mines started after a Wisdom tooth removal. I have to resort to brain surgery and it’s still not gone. I’m different now but after almost 3 years I’m managing it better to lessen the medication. I stay busy. I talk to a psychologist every month to teach me how to cope with this disease. I’m much better mentally bcz I focus on other things. I try to say busy and not think about the pain. Watch what I put in my mouth as well that may trigger. I keep my mind busy
Thanks for sharing your videos Nyree. I’m early on in my journey but have been reassured by your videos. Thank you. Mostly my struggles, aside from the pain, are trying to balance parenting 3 young children (2 of whom have special needs) and my up and down days. It’s a lot! Thanks for your community. It’s nice to not be alone. x
Yes, that was my main problem, too. Juggling family life. Thank you for watching
Hi, i have Also started to do childhood skills , so distracted a bit more . I have this issue for freaking 28 years now . I refuse to give up And feel sorry for myself . People dont and cant understand at all what we are going through. Wrap up warm And go our Doors And do your own thing go for that Bush walk or run. I cant even take meds seeing as my blood pressure Goes sky high, have landed up in IC fighting for my life a couple of times already.
Good thing stay positief lovely lady xxx stay grounded
thank you Margaret for your encouraging words
Then how are you dealing with it from 28 years and do you get sharp attacks means typical trigeminal neurlagia and how often you get attacks and your age now ??
@@iballslide7604 I go to a therapist Every singel week ( he us best , long waiting list ) And use a special cushion to sleep on. I have attacks Every day , its not easy to live with as you know yourself . Use vitamine B 12 , magnesium, fish oil and vitamin C . All in the evenings also use vitamine D 3. Apparently the omega oils are also good for muscles pains . The vit B 12 is good for the nerve pain and this you also know the two go together when having attacks . Morphine does not even help , it might take a bit off the edge . Due to all of this I hardly sleep . I try to stay positive. Stress is no good for us.
I am heading on for 60 years old ( Taurus ) but still am young at heart .
What do you do when you have attacks?
How old are you?
I hope this info might help you. Take care xxx
@@Letsfaceittogether you are more than welcome . Take care . Its sunny but windy out There .... wrap up day for us .. xxxx
@@margaretpeelen3968 do you get any surgery or are you on medicines from 28 years and how are you dealing with it and is it typical or atypical one for you??
You are very inspiring
Ive watched since beginning
My right is in remission on right side by having a RFA
But now have sporadic hits on left side
Thanks for sharing
Thank you, Deb. I hope that by sharing, it's going to be helpful. Thank you for supporting the channel.
You just appeared tonight. Am nurse disabled by MG finally seeing improvement with med and no presumptive TN...he said no clear diagnosis and only had it 18mos. In US where invisible means imaginary. Already have payback with MG and too many times of raw survival but now with loose beanie over left side of face if windy,colder than 40F or bright sun. Good to hear am not alone
No, Cheryl, you are never alone. Thank you for watching my video and sharing with us
Pls advice me based from your experiences
Hi 👋 I'm not medically trained, but I think you should go back to the neurologist to try a different medication. There are lots of different options out there. 🙏 hoping and praying you can get your pain under control
Am still suffering 5months ago,I am experiencing too much pain every day.Am drinking Carboc an antiepeliptic but does not work
I think only your neurologist can decide on the best thing for you
When did it start for you ?
About 2 years ago
Mines started after a Wisdom tooth removal. I have to resort to brain surgery and it’s still not gone. I’m different now but after almost 3 years I’m managing it better to lessen the medication. I stay busy. I talk to a psychologist every month to teach me how to cope with this disease. I’m much better mentally bcz I focus on other things. I try to say busy and not think about the pain. Watch what I put in my mouth as well that may trigger. I keep my mind busy
@@heatherlee162 had you mvd and it did not work too
@@heatherlee162 did you have brain mri with ciss sequence that shows nerve compression and then you had brain surgery??
The neurologist prescribe me carbox,an antiepwliptoc but it does not work
Is it same as the occipital?
Hi 👋 ...I'm.not too sure what you mean?
Idk if that is considered a high dose , but i intake daily 1200 mg tegretol , and its not working i have been in so much pain
It sounds as if maybe you need to go back to your medical person and ask for something different?
Did you have an mri?? Any vascular contact on nerve??
Yes, I had one, but there was no evidence on the MRI of compression.
@@Letsfaceittogether ok ,then why it is happening and it occurs even with contact with nerve , compression is not necessary
I can not even speak and eat food that are not mask