I guess maybe I just need to vent… I have TN and have tried sooo many things to get rid of this pain. I have had 2 MVD and 1 balloon compression and am back on my TN meds. I am 30 years old and just trying to live a normal life with my husband and two kids. Currently I hold down a very good full-time job but my face is back to flaring more and more and I am starting to slip back into the “poor me” feeling. Does anyone have any suggestions on how to deal with this? On my meds I feel like I am constantly in a fog, I feel trapped in my house so that the wind doesn’t blow on my face, and it is not fair. In my life, I have overcome so much - that now to have to deal with this - just doesn’t seem fair.
Tenna,
So sorry you are experiencing such a difficult time. Working does help. There were numerous days when I had excruciating pain-top of head, forehead, and eye. I looked like I had a hang over because my eye would cry and turn red. I pushed through it and worked as hard as I could. Luckily we lived close to my job-a couple of blocks. More than that, my husband would have to drive. 8-2006-8-2010 I didn't know it was TN, nor did 5 neurologists. You should talk to your neurologist. I took antidepressants and they helped quite a bit, even with the pain. Your pain rx could also be increased. Keep the faith. God will show you the way. He is a good God! I am praying for you, Tenna.
Tenna,
You are right. TN is not fair. I think we have all felt that "poor me" feeling, or something akin to it at one time or another. Do not feel alone or guilty about your feelings.
I have had a long, hard battle with my Trigeminal Nerve. It was winning between the years of 2003 - 2011, well a few days ago, actually. If you read my previous writings, I was in desperation, sometimes.
I have only now found that the Morphine and MS Contin I am currently prescribed is providing some asymptomatic days. They are the only ones I have had in years. The Morphine does not cloud my mind, nor does the MS Contin. I am adjusting a bit to a little nausea and some somnolence. I prefer it to the excruciating pain I had known before. I have been told, in my Opiate Therapy group, on this page, that this will pass. But, as we also know, pain killers are not the answer for everyone.
I admire you for working while dealing with this, as I did have a fast-paced, detail oriented job myself. This position was a victim of the recession. Having a clear mind is important to me, as well. I more than intend to return to school and a different career again, very soon! I feel, for the first time, in a long time, that I am capable of doing so!
Here is hoping that you find the warm and compassionate doctor who will take your situation/pain seriously, and work with you until they find what would give you long-lasting relief, as I have, or "your own personal miracle", as I like to call it.
Many of us do, eventually, find what works. You sound like you have a good survival instincts, to seek out those who would relate, is an example of your strength. You have found us. To try MVD twice and "Balloon Compression", well that takes a lot of courage!
Please know we are here for your support. Venting is fine, and many do so here. Most of us need to, at times.
MVD is also not right for everyone, either, nor Balloon Compression, and apparently, not the end of your journey with this adversary.
I am wondering if your symptoms are TN or ATN. I am thinking that since cold triggers pain, you may have Classic TN. Perhaps your symptoms are a combination of the two.
I have Atypical Trigeminal Neuralgia. Unmedicated, my face aches, burns, sears, throbs and there seems as if there may be a vice grip on both sides of my face, and at times, it feels as if parts of it are on the verge of being pulled apart. I have been to the E.R., as have many other members here due to the severity of their condition. There, I was stabilized on 2 mg. Dilaudid and a Fentanyl patch. It worked for awhile. I am a textbook Atypical Trigeminal Neuralgia, or type II, patient. The treatments for those two types of TN can even vary. So, even though it is hit and miss and that is SOOOOO frustrating, we are here to share our experiences with you through the ups and downs of whatever you are trying until you find what works, and beyond. I hope it helps you, as it has me.
I have heard success stories. I will pray for that you are one waiting to happen.
A agree with Betty, that God will see you through.
Hang in there!
Your friend,
Stef (S-Curve)
Teena I wouls say you been through alot and to still hold down a job and take care of two children that’s great . Yea this pain still let’s you know it’s there with the wind and taking these medication’s.I to feel like Im in a fog I had to cut back on some of them,so it just takes off the edge. Sound’s like your pretty amazing Vent you deserve it. There are so many differnt way’s this pain affect’s our live’s. Sound’s even if the pain let’s you know it’s still there you are doing every thing possible to live a normal life. I hate just a light wind or breez set’s pain off. and not to say what the med’s due to us. Sound’s like im venting some to I just want to say sound’s like your doing every think possible with courage and strength. Hope you find relief of pain and the fog you feel in due to med’s. Prayer’s Sent Shirely