Hi Rosie! I had my first TN attack in Oct. It involved all three areas and was a WHOPPER! I know the fear and scared at the "signs" when they come, just like you. Who wouldn't? The way I describe it is "the pain is surreal". I just started "tegretol" and it helps. :) I want to THANK YOU for posting your video! Just knowing your not alone means a whole lot! Love Julie
I had trigeminal neuralgia for 10 long miserable years, it was absolute AGONY. You are locked into HELL with it. One day I tried chinese acupunture. It was an IMMEDIATE SUCCESS and I was cured. I have have been pain free for 9 years now. How I bless those needle in my face the chinese doctor put in.
Hi there, I don't know if this is going to help anyone, but I had TN for 12 years!!! And 4 years ago had a final operation at The Walton Neurology Clinic, in Fazakerley... No more pain thank God!!!... Before that I had 3 temporary operations and after each one the pain got worst. The only bit of help I had before the operations was Carbamazapine tablets...(which are usually used for epileptics)... I soooo emphatize with anyone who is going through this pain and I am a new person now 'Pain Free'
Hi there, I don't know if this is going to help anyone, but I had TN for 12 years!!! And 4 years ago had a final operation at The Walton Neurology Clinic, in Fazakerley... No more pain thank God!!!... Before that I had 3 temporary operations and after each one the pain got worst. The only bit of help I had before the operations was Carbamazapine tablets...(which are usually used for epileptics)... I sooooo emphatize with anyone who is going through this pain and I am a new person now 'Pain Free'
I am sorry for your pain. I too am suffering from it. I'm 33 yrs old and was prescribed 75 mg which hasn't helped me that much but was curious if u tried it??
@messinias I have not tried Lyrica...my neuro is not too keen on it since most of his patients have not had much luck with it. My TN has subsided and I have only been having tingling and numbness in my lips and tongue lately. I do take 1200 mg of the generic version of Trileptal. That makes a difference for my all over buzzing and the TN...except when I am in the middle of an attack...sigh. I am sorry for your pain too and hope you find some relief.
I do not have MS but I have had bilateral TN for 15 years. I am now 40. My heart goes out to you. I never had the itching and numbness until just this year. I get it in my lips now. My attacks take over one entire side of my face. Wishing you and all others who suffer from TN the best.
I'll tell you what can help a bit for me.. a hot bath, believe it or not. It's like it opens things up and eases the head pain. I'm prescribed medical marijuana for that pain you describe in the other video that feels like a vice grip in the synthetic form (pills), and I take Klonopin as well for the crawlies and burning mouth syndrome (dreadful!).
Message me if you want to chat sometime. :) Laura xoxo
Hi, yeah I have had the face buzzing, itchy, numb thing. It's weird. To be honest it is one thing that still happens a little even since having the CCSVI procedure and it tends to be on the left side of my nose. Just wondering if you have had the scan yet and how it went? Kerri
@kezzcass I have had the scan and it showed narrowing in the left IJV, reflux in the right and narrowing in the azygos. I met with a wonderful local FSIR who was skeptical at first but after I presented him with a ton of information and the NYT article with Dr. Scalfani's name in it...he was interested. He went to the symposium in NY and came back willing to treat me!
That is curious about your TN...I guess a lesion there is not going to disappear with improved blood flow...sigh.
@TheGothicRosie Wow Rosie, that is great news that you have someone willing to treat you. Look forward to hearing that all go smoothly and having improvement. I wouldn't call it TN (as I have had nothing like the pain I used to have beforehand). We are so early in this journey and perhaps I have some residual nerve damage. I don't know - let's hope we have researchers who can answer these questions for us. K
You poor thing, that sounds horrible. I had bells palsy once, but no pain. I get the wierd itching sometimes and little twitches but nothing major like that.. I read somewhere that facial symptomsare the most distressing. Fingers crossed it doesnt happen again, who knows, it might just be itching this time. Amanda.
@missalgernon Thank you Amanda. I am hopeful for just itching too. I remember when I first read about TN and thought "I am thankful I don't have that"..guess I jinxed myself. Each attack is horrendous, I would not wish this on anyone. I have read of attacks lasting for months and people with it committing suicide.
If it lasts too long, I would rather lose the nerve connection there than my life, and cut the nerve in surgery. I am hopeful I will not have to do that, ever.
@tarahvirgil He is waiting for an a-OK from an Institutional Review Board, this is an org that reviews treatments and gives approval. I am not 100% sure but I think IRB here means Institutional and run by the FDA.
He is optimistic, but I don't think Buffalo has received theirs yet so I am a little pessimistic he will get his soon. We'll soon find out. :)
@TheGothicRosie I have an update from Dr. Hubbard, our scans still need interpretation and so an immediate treatment the same day is not possible. This is because they are going to scan us using the Haacke protocol and that includes a variety of scans, then the scans are sent to Dr. Haacke for analysis. Treatment at the Hubbard Foundation would only be available after IRB approval and after the scans are reviewed...*sigh*
Hope that pain doesn't return. I had something similar two years ago - a buzzing, hypersensitive left face for a couple of weeks. There was a little pain, but not much. The worst was merely difficult speech. I've never had the facial pain that some describe, and of course it's scary. But maybe yours will just be like mine this time, eh? Good luck...
@lovingfatalist I hope the pain does not return either. It is the worst pain I have ever felt, worse than a pregnancy contraction, and those are pretty high up on my list. Thanks for the good thoughts, I need all the help I can get.
I get the SAME thing!!!!! not the itching, but everything else..same pain in same areas! Also, I get wierd pain in my neck, like I have swollen glands for weeks at a time...??? Good luck w/ your tests.. Im going to San Diego on June 24th.
@tarahvirgil Good luck with yours. Dr. Hubbard hopes to be able to also treat by then (with the blessings of the IRB), hopefully you will be able to be treated as well. Fingers crossed!
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Hi Rosie! I had my first TN attack in Oct. It involved all three areas and was a WHOPPER! I know the fear and scared at the "signs" when they come, just like you. Who wouldn't? The way I describe it is "the pain is surreal". I just started "tegretol" and it helps. :) I want to THANK YOU for posting your video! Just knowing your not alone means a whole lot! Love Julie
jujubeee714 2 months ago
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I had trigeminal neuralgia for 10 long miserable years, it was absolute AGONY. You are locked into HELL with it. One day I tried chinese acupunture. It was an IMMEDIATE SUCCESS and I was cured. I have have been pain free for 9 years now. How I bless those needle in my face the chinese doctor put in.
LotusReach 5 months ago
Hi there, I don't know if this is going to help anyone, but I had TN for 12 years!!! And 4 years ago had a final operation at The Walton Neurology Clinic, in Fazakerley... No more pain thank God!!!... Before that I had 3 temporary operations and after each one the pain got worst. The only bit of help I had before the operations was Carbamazapine tablets...(which are usually used for epileptics)... I soooo emphatize with anyone who is going through this pain and I am a new person now 'Pain Free'
eddieranking 10 months ago
Hi there, I don't know if this is going to help anyone, but I had TN for 12 years!!! And 4 years ago had a final operation at The Walton Neurology Clinic, in Fazakerley... No more pain thank God!!!... Before that I had 3 temporary operations and after each one the pain got worst. The only bit of help I had before the operations was Carbamazapine tablets...(which are usually used for epileptics)... I sooooo emphatize with anyone who is going through this pain and I am a new person now 'Pain Free'
eddieranking 10 months ago
Sorry 75 mg of lyrica..
messinias 10 months ago
I am sorry for your pain. I too am suffering from it. I'm 33 yrs old and was prescribed 75 mg which hasn't helped me that much but was curious if u tried it??
messinias 10 months ago
@messinias I have not tried Lyrica...my neuro is not too keen on it since most of his patients have not had much luck with it. My TN has subsided and I have only been having tingling and numbness in my lips and tongue lately. I do take 1200 mg of the generic version of Trileptal. That makes a difference for my all over buzzing and the TN...except when I am in the middle of an attack...sigh. I am sorry for your pain too and hope you find some relief.
TheGothicRosie 10 months ago
I do not have MS but I have had bilateral TN for 15 years. I am now 40. My heart goes out to you. I never had the itching and numbness until just this year. I get it in my lips now. My attacks take over one entire side of my face. Wishing you and all others who suffer from TN the best.
gemarbejb 1 year ago
My first MS symptom was Trigeminal Neuralgia.
I'll tell you what can help a bit for me.. a hot bath, believe it or not. It's like it opens things up and eases the head pain. I'm prescribed medical marijuana for that pain you describe in the other video that feels like a vice grip in the synthetic form (pills), and I take Klonopin as well for the crawlies and burning mouth syndrome (dreadful!).
Message me if you want to chat sometime. :) Laura xoxo
dmplaura 1 year ago
Hi, yeah I have had the face buzzing, itchy, numb thing. It's weird. To be honest it is one thing that still happens a little even since having the CCSVI procedure and it tends to be on the left side of my nose. Just wondering if you have had the scan yet and how it went? Kerri
kezzcass 1 year ago
@kezzcass I have had the scan and it showed narrowing in the left IJV, reflux in the right and narrowing in the azygos. I met with a wonderful local FSIR who was skeptical at first but after I presented him with a ton of information and the NYT article with Dr. Scalfani's name in it...he was interested. He went to the symposium in NY and came back willing to treat me!
That is curious about your TN...I guess a lesion there is not going to disappear with improved blood flow...sigh.
-rosie
TheGothicRosie 1 year ago
@TheGothicRosie Wow Rosie, that is great news that you have someone willing to treat you. Look forward to hearing that all go smoothly and having improvement. I wouldn't call it TN (as I have had nothing like the pain I used to have beforehand). We are so early in this journey and perhaps I have some residual nerve damage. I don't know - let's hope we have researchers who can answer these questions for us. K
kezzcass 1 year ago
You poor thing, that sounds horrible. I had bells palsy once, but no pain. I get the wierd itching sometimes and little twitches but nothing major like that.. I read somewhere that facial symptomsare the most distressing. Fingers crossed it doesnt happen again, who knows, it might just be itching this time. Amanda.
missalgernon 1 year ago
@missalgernon Thank you Amanda. I am hopeful for just itching too. I remember when I first read about TN and thought "I am thankful I don't have that"..guess I jinxed myself. Each attack is horrendous, I would not wish this on anyone. I have read of attacks lasting for months and people with it committing suicide.
If it lasts too long, I would rather lose the nerve connection there than my life, and cut the nerve in surgery. I am hopeful I will not have to do that, ever.
TheGothicRosie 1 year ago
You mean Hubbard will do angio's? what is the IRB.. I don't know anything...lol
tarahvirgil 1 year ago
@tarahvirgil He is waiting for an a-OK from an Institutional Review Board, this is an org that reviews treatments and gives approval. I am not 100% sure but I think IRB here means Institutional and run by the FDA.
He is optimistic, but I don't think Buffalo has received theirs yet so I am a little pessimistic he will get his soon. We'll soon find out. :)
TheGothicRosie 1 year ago
@TheGothicRosie I have an update from Dr. Hubbard, our scans still need interpretation and so an immediate treatment the same day is not possible. This is because they are going to scan us using the Haacke protocol and that includes a variety of scans, then the scans are sent to Dr. Haacke for analysis. Treatment at the Hubbard Foundation would only be available after IRB approval and after the scans are reviewed...*sigh*
TheGothicRosie 1 year ago
Hope that pain doesn't return. I had something similar two years ago - a buzzing, hypersensitive left face for a couple of weeks. There was a little pain, but not much. The worst was merely difficult speech. I've never had the facial pain that some describe, and of course it's scary. But maybe yours will just be like mine this time, eh? Good luck...
lovingfatalist 1 year ago
@lovingfatalist I hope the pain does not return either. It is the worst pain I have ever felt, worse than a pregnancy contraction, and those are pretty high up on my list. Thanks for the good thoughts, I need all the help I can get.
TheGothicRosie 1 year ago
@TheGothicRosie well, at least pregnancy contractions are one health problem I don't have to worry about (sorry to be an insensitive pig!) Toby x
lovingfatalist 1 year ago
@lovingfatalist LOL that brought a smile to my face. Love that and not insensitive at all. :)
TheGothicRosie 1 year ago
I get the SAME thing!!!!! not the itching, but everything else..same pain in same areas! Also, I get wierd pain in my neck, like I have swollen glands for weeks at a time...??? Good luck w/ your tests.. Im going to San Diego on June 24th.
tarahvirgil 1 year ago
@tarahvirgil Good luck with yours. Dr. Hubbard hopes to be able to also treat by then (with the blessings of the IRB), hopefully you will be able to be treated as well. Fingers crossed!
TheGothicRosie 1 year ago