Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

Type II Trigeminal Neuralgia

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Type II Trigeminal Neuralgia

For support and exchange of ideas and info for those caring for someone, or suffering from Type 2 Trigeminal Neuralgia, also referred to as Atypical Trigeminal Neuralgia, or ATN.

Location: subject-specific group
Members: 453
Latest Activity: yesterday

Discussion Forum

MVD with Type II

Started by Mandie. Last reply by ukfan Aug 26. 20 Replies

 Has anyone with Type II had MVD. What was the recovery and procedure like? Where you able to go back to work?If there is another place I should go, please let me know.I am not sure if I am posting this correctly since I am new. I am looking to meet…Continue

Has Anyone Had A Stellate Ganglion Block Done?

Started by RueAnn. Last reply by Richard A. "Red" Lawhern Aug 24. 6 Replies

Hello friends! I have Geniculate Neuralgia, but I am hoping to find someone who has undergone this procedure here, since it is used primarily for TN sufferers. I met a new pain doctor and had high hopes, as their website stated experience with TN,…Continue

Tags: block, pain, doctor, nerve, GN

You're Needed, Here!

Started by Henry. Last reply by Henry Aug 9. 13 Replies

OK. So you don't have the beautiful writing skills (as I), or maybe you don't have a Ph. D. (as Red), but you're still needed back here. Personally, I have only been here a dozen or so times myself in the past year. I usually go back when I feel…Continue

Nausea

Started by Nomad. Last reply by mrl Jul 6. 3 Replies

I haven't been here for awhile, but my pain is flaring and I'm also having severe nausea. Having a little trouble maneuvering the site right at the moment. I think I saw for a second someone else asked this same question?????? I have TN 2. I use a…Continue

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Comment by Tree69 on February 10, 2014 at 9:18am
Ditto on both stephyb and granny's posts. Thanks for chiming in. I want to help but I am having a flare up of CPH and am at the end of my Botox dose. Flare up caused by overdoing it. Physical therapy is key I now have a traction machine for home that dose not touch my face. Anyway hope we are helping. I will post more later when I can see straight.
Comment by stephyb on February 10, 2014 at 6:18am

Hi there  I have been diagnosed with a condition called Hemicrania Continua which has almost identical symptoms as yours.  In addition I have too much mucus and watery eye on the affected side.  My ear also gets blocked regularly.  I have had this for 9 years and it has gradually got worse during that time.  I have pain all the time now with flare ups every 3-4 weeks or so with the sort of pain your describe that completely floors me.  HC causes symptoms that are a mixture of ATN, cluster headaches and migraine thrown in for good measure.  A drug called indomethacin completely relieves all symptoms (they don't know why) but not everyone can take it.  I can only take it for a few days before it causes gastric problems.  I now take Pregabalin, amitryptalin (when I need it) and I have botox every 12 weeks.  I have virtually no pain now and my life back.  Ask your GP to give you indomethacin as a trial.  If your symptoms go (it may take a few days) then that will confirm the diagnosis.  Also ask  to be referred to a good headache specialist.  The condition causes pain in the head, face, neck and shoulders as you describe.  Incidentally, I also had a serious road accident about 15 years ago and was misdiagnosed with sinus problems,  I had a FESS operation which I didn't need and made my symptoms a whole lot worse.   All the best to you and if you need to talk, feel free to message me at any time

Comment by Granny on February 10, 2014 at 2:28am

     Sammykin, Tree69 may be on to something, your pain could be this TAC with ON, occipital neuralgia. My neck gets involved with my ATN and atypical GN. My neuro does botox injections for my neck and also goes into my scalp and does the trigger areas for ON. I have had some reduction in the GN and headaches that were behaving like ON were coming from my neck. Not sure if something like this is available for you. Also a good PT that can do some hands on therapy on all the trigger points for ON. Mine would cradle my head in her hands and work at the base of my skull and I got relief from my neck pain moving upwards into my head causing ON. A good neuro and pain management doc should be able to help you. Not all neuros do botox. Sharon

Comment by Tree69 on February 9, 2014 at 8:00pm

Sammykin- I put together a copy paste document to help sort thru some medical jargon. Google any words you do not understand. I understand that reading may trigger more pain, so I know you will get thru it as your head will let you.

Hugs-Tree

Tac%20headache%20diagnosis.docx


Moderator
Comment by Richard A. "Red" Lawhern on February 9, 2014 at 1:57pm

Here's one reference from the British Medical Journal  that isn't free of medical jargon, but appears to be fairly deep:

http://jnnp.bmj.com/content/72/suppl_2/ii19.full.pdf

The whole notion of trigeminal cephalgias seems to be new within the last few years. The last time I checked the International Association for the Study of Pain, an argument was still going on there concerning whether the classification actually means anything substantively new.  Somebody remind me in a few days that we want to find a patient-oriented site where the jargon level is lower.

Regards all,

Red

Comment by sammykin on February 9, 2014 at 1:42pm

Tree69 and everyone else - i cant find any information on occipital neuralgia and TAC that isnt totally full of medical terms - can anyone help me with this. 

Comment by Tree69 on February 9, 2014 at 10:52am
A message from sammykin to all members of Type II Trigeminal Neuralgia on Trigeminal Neuralgia (TN) - Online Support Group!

i am quite confused! - fairly normal for me!!!! i am diagnosed as a Atypical sufferer. but when i read through the forum, it doesnt sound like i am either type! i do have the intense throbbing pain that goes through my eyes and my ears and head and neck. it causes numbness, speech problems, sight, smell and hearing problems - all which are slowly deteriating. these attacks can last for up to a week during which i may spend the two worst days totally comatosed. i have a illeostomy as well, so my partner wakes me to stuff water and epilepsy meds down me and to check and change the stoma bag if necessary. after this me, i could be clear of an attack for up to three weeks, then it starts again. in times of severe stress = either happy or sad or anger or during the winter months or extreme sunlight, they are more frequent. do other sufferers follow simialr patterns?

Sammykin- are you sure that you are not experiencing migraines and or other TAC (Trigeminal autonomic cephalagias) headaches?

What you are describing sounds like what I experience. On this group site I started a discussion to help people decide if some of their face pain and head pain is part of another illness. By treating more then one illness I have had much more relief. Also check out the occipital neuralgia group. Those guys helped me figure things out. We need a TAC group moderators! Hugs - Tree

Moderator
Comment by Richard A. "Red" Lawhern on January 30, 2014 at 9:49am

I'm posting this for one of our Members who declares he isn't IT-friendly and would prefer that I digest any replies and get back to him...

> On 24 Jan, 2014, at 10:06 pm, Mikechan <mike52ckc@yahoo.com> wrote:

> After 20 years of tegretol, neurontin and finally gamma-ray treatment, my TN came back with a vengeance last year and I was warded at the SGH in Singapore for 10 days which even 2 shots of morphine could not lessen the burning pain. My neurosurgeon referred me to a pain specialist from Texas attached to the pain management centre in GH. He did the above twice, once in Apr and the other in Aug, both in 2013. Touch wood and thank God, I'm now pain-free with only rare mild pulses now and again. Seems inflammation was running wild at my trigeminal base and the steroid reduced and more or less stopped it.

> Not much info from internet about this method of healing.

> Any other fellow sufferer had this type of day op for his TN? Worked well like mine?

> Oh yes, I'm still taking a daily small dose of tegretol.


Moderator
Comment by Richard A. "Red" Lawhern on December 30, 2013 at 2:01pm

You're entirely welcome, Sharon.  I do what I can...

Regards and a Happy New Year to all.
Red

Comment by Granny on December 30, 2013 at 7:20am

     Red, I always see you checking in and doing what you do for this site. Thank you and here is wishing you a very Happy New Year and wonderful time in California, my son lives in San Diego, I have been out 2 times, beautiful from the shores of the Pacific and an hour away up, up we go into the mountains! Sharon

 
 
 

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