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: 458
Latest Activity: on Saturday

Discussion Forum

You're Needed, Here!

Started by Henry. Last reply by Not Again Sep 10. 16 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

Wearing glasses

Started by Judy D'Arcy-Evans. Last reply by Granny Sep 9. 24 Replies

Does anyone else find having to wear your glasses hurts your face on bad days of pain.I need my glasses to see as I have several mixed up eyesight problems but find them touching me very painful.Just wondering how common this is. ?Continue

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

Comment Wall

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Comment by Not Again on September 9, 2014 at 9:12am

Sunny J - I haven't had those symptoms from my TN, however, I have had those vision problems from some of the meds I have been on. Sorry  I don't remember exactly which one...probably gabapentin, lamotrigine or keppra..since I am no longer on those. Perhaps it is from one of your meds?

Wishing you better days ahead. Stay strong, you are not alone! 


Moderator
Comment by Min on September 8, 2014 at 10:49pm

Sunny J.  I haven't really had those symptoms.  But I have had blurry vision quite often.  This may be something you should have checked out with your doctor.. I would think... :-/


Moderator
Comment by Min on September 8, 2014 at 8:07pm
Amen , Sharon! Amen. :-)
Comment by Granny on September 8, 2014 at 8:39am

     glosmenagerie, I just read your long complicated history of pain and depression. You were wise to weed out some meds. Narcotics will cause some depression but if they work you should be able to counter act that side effect. I too have a long history of other dx's with ATN and atypical GN, failed back surgery, on and on. I am 58 now, soon to be grandmother of 5, widowed, but happy to be blessed with these grandchildren. I too know there is Grace to be blessed with if you will only except it. You are strong in faith and walk with Christ daily. Sharon

Comment by Mary E. on September 7, 2014 at 3:30pm

Glosmenagerie,

My pain has really been bad yesterday and today  although I think it has been easing up somewhat.  It is good that you are expressing your frustrations since you do have many difficult problems you have to tolerate.  I also play in an orchestra and it can be quite frustrating when I feel that the TN is affecting my playing.  I also suffer from depression, anxiety, and OCD.  This mix with the pain can make for some difficult times.  I don't think you are feeling sorry for yourself, just frustrated!  I wish for you improved health!


Moderator
Comment by Min on September 6, 2014 at 7:47pm
I wish for you better days glosmenagerie...with low pain and lots of sunshine!!! Min
Comment by mrl on September 6, 2014 at 12:01pm

I am so sorry about what you're going through.  To defeat the Depression monster, only to have this kind of pain bring it back... well, that's a special kind of miserable. I do not know what God is doing or why, but kudos to you for keeping the faith. I pray that this will be just another mountain you will defeat & have another story about God's help & grace.  thinking of you.

Comment by Anna on September 6, 2014 at 9:47am
Glosmenagrie,
I'm sorry your in so much pain we have very similar symptoms. I sent you a friend request email I have lots experience with this issue and it may help.
Comment by glosmenagerie on September 6, 2014 at 6:15am

It is 4:22 a.m. and I am very frustrated and depressed. I was diagnosed with TN2 in May. My TN affects me in the V1 and V2 nerve bundles. I woke with the searing pain in the nasal area (if I don't breath through my nose it doesn't hurt as much :-) and the crappy ache/pressure over and around my left eye at 1:00 a.m.

I was diagnosed by an ENT in May who had an MRI done and set me  up for an appointment with a neurologist. The first neurologist canceled in July 2 hours before the appointment because something happened in their world so it was another two month wait and this time I get a newbie to the profession. I was already on Gabapenton for Fibromyalgia and Myophacial Pain Syndrome so the ENT told me to double the amount to 2400 mg. That helped a bit. My PA added Firocet to help me with the pain. I also use hydrocodone for my Fibro and MPS. The neuro is adding Tegratol but I have to wait for at least 10 days for Express Scripts to get it processed. She wants me to drop the Firocet as she is not a fan of the medication and does not see that it helps much with TN pain. In May, when I was diagnosed with TN2,  I was also diagnosed with T1 diabetes and pernicious anemia due to a Whipple procedure 8 years ago for a none cancerous gristly growth in my pancreas head. I also have osteoarthritis which caused me to have both knees replaced at 45 yrs of age. Then there is a history of Clinical Depression, PTSD, OCD, Anxiety Disorder and ADD/HD. I finally stabilized with the mental health issues a year and a half ago enough to go off of all my psych meds! :-) However, I am finding the relentlessness of the TN aches and burning is wearing me down and I find the depression paths coming back through once more. I see my psychologist next Friday and will talk with her about things regarding the depression and anxiety I have been feeling.

I guess this mornings post is mostly a rant. I am frustrated at adding another relentless pain condition for which little seems to be able to help. I just get so tired of being in pain all over my body and the TN headaches are taking me out of activities I enjoy. I have been able to be active in my church, a CASA volunteer, and enjoy playing in the orchestra at my towns small college. I have had to cancel out of so many commitments on a day by day basis depending on how I feel. It is so frustrating to be here again when I have fought so hard to have a life again after a major clinical depressive incident brought on by a lot of factors including out of control pain in 2004. Through the grace of God I was able to drop my medications down from over 15 various prescriptions to about 5 not including my diabetes and asthma scripts. Now I feel I am starting over again. As I said earlier, I guess I am just ranting and feeling sorry for myself this morning. Fortunately, I know my feelings tend to be transient and I will learn to live with the waxing and waning of TN through the grace and mercy of Jesus Christ. 

As I write this, God brought to my mind, II Corinthians 12:9 "And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me." The context of this verse is that the apostle Paul was dealing with "a thorn in his flesh that he asked the Lord to remove from him. After asking three times the Lord gave him the verse in 12:9. I know I am weak and that God's grace is more than sufficient for me. May God's light shine through me through my weaknesses! My struggle with TN2 is just another way for God to work through me and in me. May God bless each one of you today as you struggle with this disease. - Gloria

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.
 
 
 

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