It has been almost 3 yrs. since my MVD and I'm still miserable. Numbness, eye pain, feeling of bugs crawling, lips burn like they are on fire, etc. I have been to a pain specialist and have tried most everything. Still hurting badly. No one understands this. I do believe we suffer in silence. Does anyone have anything to offer or any ideas? Please help. Sometimes I feel so desperate, then I think oh well, that's life. But the thought of 20 more years of this, I don't know.
so sounds like you have the more constant type 2 pain?? why do you think your pain started?? dentist?? I can only tell you my experience personally and hope it can somewhat help you as me myself am still suffering from the uncomfortableness of this disease. When I first got diagnosed I did chiropractic for three months it helped somewhat but the pain kept returning so I did quit but it was helpful. I got frustrated broke down and started taking nortriptyline i worked up to 75 mg a day and can still go up to 100 mg. It has helped me quite a bit. if u wana talk more u can friend me and message me good luck
I woud suggest that you are waayyy overdue to see a neurologist or neurosurgeon extremely familiar with TN.
Have you seen anyone in those fields in the last couple of years?
I wish I knew what to tell you except to see a GOOD neurologist or neurosurgeon that SPECIALIZES in TN. (((((((hugs)))))))))
Donna Cook Turnage said:
I wish I knew what to tell you except to see a GOOD neurologist or neurosurgeon that SPECIALIZES in TN. (((((((hugs)))))))))
Yes, and I have been in direct contact thru email with my surgeon in Pittsburg. He is from Dr. Peter Janetta's office. He studied under him. He doesn't have a clue what to do. He suggested the pain management Dr. which I have done. We have tried everything he knows to do, But thank you.
Donna Cook Turnage said:
I wish I knew what to tell you except to see a GOOD neurologist or neurosurgeon that SPECIALIZES in TN. (((((((hugs)))))))))
Do you have type 1 or type 2? Type 2 seems to be harder to treat from what I have read and from what type 2 patients say.
It's reallllly hard when you mystify the real experts!
Many here have been dealing with pain management doctors -- many with success!
Let us know!
So very sorry to read of your suffering. I am very familiar with the symptoms you describe...burning, numbness, bugs crawling...my lips, tongue, and teeth feel like I have boiling hot liquid on them all the time. My face burns like I have placed a hot curling iron against it much of the time, etc. There are plenty of clinical terms for such things...parasthesia, anesthesia delorosa, etc. They all are examples of nerve damage to your trigeminal nerve, most likely from surgery. It is very hard to work within such a small space inside a person's head and not come into contact with nerve branches in a way that causes them some harm...many people suffer such things after surgeries. And many times, surgeons don't own up to them, sadly.
Pain doctors, in general, aren't experienced with neuropathic pain, although the person above mentioned that many here have found success. What I've experienced in my work advocating for dozens of patients is that they focus on giving nerve blocks and epidermal-oriented treatments that don't treat such deeply rooted pain. However, there are things that you can do. For example, I find the following simple rules will keep my pain receptors lower: Never get too hungry, thirsty, tired, cold, hot, stressed, or emotional. I know it's impossible, but that's what I shoot for. I do take meds, with a combination of two anti-seizures at lower dosages of each to reduce the sedation side effects, an anti-depressant with pain fighting properties, a muscle relaxant for the secondary muscle tension, and a sleep aid. I also find great relief from therapeutic massage, walking, painting, and prayer. You can live well with pain, although it will be different than you lived before pain became part of your life's story.
I share more thoughts and ideas on my own blog, which is supported by this wonderful site: www.GreatPainGreaterGod.com Hope you'll visit sometime.
Always, always, always remember that you are not alone!
Judi,
Thanks so much for your reply. I trully think you understand the painful experience that I have had. Thanks for your Great Pain, GreaterGod, outlook. It will truly help me as I continue to face this alone. That is how we all feel. Only another TN patient understands. I would like to follow your posts for further help and try my darndest to live up to God's expectations. Being so perfect as he is, I only hope I can do only some of the same. He is the only answer for us I do know that, it's just hard in this real unperfect world we are all experiencing. Thank you so much for your imput. I will continue to read it daily to encourage me with this misfortune of pain. You are a woman of great wisdom and I need some of that to survive. THANKS, Love, Marsha(Santafered)
Marsha-- You compliment me on having wisdom, when I do not!! I am weak and dependent! I have shaken my fist at God many times in this journey, but He never gives up on me. I don't know what expectations you think God wants you to live up to...for I believe we can be given freedom from trying to live up to anything by the grace provided by Christ. I believe God sees me as His daughter, desiring only to work through me and in me for goodness. I know He didn't "make me" ill, but allowed the natural effects of whatever caused, only because He knew He could use it for good in my life and the life of others, if I will trust Him and stay close to Him. Does all this sound like gobbledy-goop? Or offensive? I don't mean to do so. I'm better at talking than I am at "typing" because I certainly am no preacher-type!! If you spend some time reading my postings on my site, you'll quickly find that I'm quite "real" about my life--in all its grittiness-- for living with pain isn't easy. But, all through the pain, God is present and growing my joy. It amazes me constantly!
Judi, no, you don't sound gobbledy-goopy, your words have just helped me. I do understand were you are coming from but by reading your words it has helped me see things a little differently. I do know God is present and helps me each and every day or I wouldn't be here. You have helped me realize just how much he does care. I think sometimes we do forget his presence when its right in front of us. We are just blindsided from this life here on earth. But thank you for helping me to see it all again. It is truly only with God's grace that I'm still ticking. I do know I'm weak in many ways, and always need him with me. Thanks.
Judi from Virginia said:
Marsha-- You compliment me on having wisdom, when I do not!! I am weak and dependent! I have shaken my fist at God many times in this journey, but He never gives up on me. I don't know what expectations you think God wants you to live up to...for I believe we can be given freedom from trying to live up to anything by the grace provided by Christ. I believe God sees me as His daughter, desiring only to work through me and in me for goodness. I know He didn't "make me" ill, but allowed the natural effects of whatever caused, only because He knew He could use it for good in my life and the life of others, if I will trust Him and stay close to Him. Does all this sound like gobbledy-goop? Or offensive? I don't mean to do so. I'm better at talking than I am at "typing" because I certainly am no preacher-type!! If you spend some time reading my postings on my site, you'll quickly find that I'm quite "real" about my life--in all its grittiness-- for living with pain isn't easy. But, all through the pain, God is present and growing my joy. It amazes me constantly!
Marsha, you're authenticity is awesome...sorry I'm just getting back to the community...I'm in a much worse pain season than I've had for a year or so; finally have relented to increasing meds which I hate to do and is leaving me overly sedated--praying I will adjust a bit better!
I really do admire how real you are. When you said, "I think we forget his presence..." I say, "That's for sure..especially when life brings things that seem to so opposite of who we think he is!" Pain has been my greatest faith challenge; yet through it He has consistently revealed Himself to be the only one who "gets" me. I read the Psalms and it seems to mirror my feelings... "I cry aloud to the Lord; I lift up my voice to the Lord for mercy...for I am in desperate need. 'Rescue me from that which pursues me, for it is too strong for me. Set me free from m prison that I may praise your name." (Psalm 142). So many of the Psalms speak to my pain, or comfort me. Psalm 139 always brings comfort.
I have been forever changed by this pain...I have been humbled by it. No longer the "type A", "get the job done" gal I was, who put getting things done well over relationships, I have become a person who cares about people who hurt. I reach out to others who are hurting, like me, although their hurts may be different--there is an invisible bond among the broken, don't you think?
Such a different life for us with pain now. We related to everything, everyone, in a different manner, as they do us. For me, once an "it" girl, now I'm a "who's that" girl. But, in my inner self, I am more at peace and feel a deep joy in the few relationships I do have. Pain has brought important healing to me in areas that needed it---not the physical healing I would like--but others that were ugly and hurtful to others--and healing still goes on. I tell people, I'm being healed from the inside out. I'm still a mess, and always will be, no doubt.
Cry out to God, friend. And keep doing it. My pain forced me to search for God in a whole new way and it has been awesome. Keep in touch.