Stephanie good luck! Let us know how it goes!
Hi Jennifer,
I am so sorry you need to be here in the group & often feel sorry for myself. I am married to a Great husband, but I too have fear of what will happen to me to us. I am the strong one, the one that has always lifted others up, the first one to lend a helping hand & now, well it is just now. I have teenage twins who are used to me, not showing up & this breaks my heart. If they see my car in the carport when coming in from school, they come in asking is Mom sick? My grand babies live less than a 1/2 a block away, I would love to stop & see them every day, but sometimes it is all I can do, to make it into my own house after work. They are too young to understand why "Nana" can't play. I don't know how you feel, because this hit me in my late 30's, but I do sympathize. I'm new here & probably don't have much advise to offer, but I can listen, reach out to me if you need.
Thank you for the continued support everyone. Saw my Dr earlier this morning and we are trying another nerve block next Tuesday if it doesn’t work he wants to send me to mayo clinic which really scares. Luckily I live in Jacksonville fl and there is a mayo here. The thought of having to go there scares me though because if they can’t help me then there’s no one left. I’m also going to see a maxiofacial oral surgeon for just another opinion ( like 15 wasn’t enough)
Don't be scared of going to the Mayo Clinic. I've read about many situations where doctors at these bigger places like Mayo, Johns Hopkins, etc. can figure it out. I'm hoping you'll find an answer there!
My pastor had maxilo-facial surgery and that solved her problem. It was first recommended to me, but I didn't go because I just didn't think that was what was going on. But with your case, maybe it is. You said your pain began when you had a permanent retainer removed. That tells me that maybe something isn't in alignment, your bite might be messed up, etc. This may be worth pursuing.
I wish I could get into Mayo, there Neuro department has a wait list that is so long they aren't even adding to it. My sister-n-law is a Molecular Biologist there & even tried to get me in through her Internal Medicine Dr., no luck so far.
I do hope you reconsider going to Mayo, as the specialists there have probably seen it all & have vast resources to tap into.
Having said that everyone has their own Journey & experiences & I am in no way saying you will be better off, but you will have some other input.
Feel Better, I hope the nerve blocks work for you
I understand what you are going thru even tho I am in my 50s I love life. But when just a simple breeze brings you excruciating pain it's not easy to want to go on. But you do, you have to. You mention putting on a fake smile, well I can't even smile unless I want to pay dearly for it. Anyhow this wasn't ment to drag on about pain, I want to just try to give you some hope. I know it isn't easy but we all just try. Are you on meds? I was told they take some time to work. I don't know. I just keep praying every day for the pain to stop and try to look for some hope and good things until the next wave of pain sets in. And yes I agree that the medical field could care less about us, but my doc says they are doing research on it. I hope they come up with something soon. Hang in there.
So sorry to hear your situation, you are not alone. I am 50 and was diagnosed with TN two and half years ago. Lots of meds and now 2 procedures later still have the same issues. Today was a follow up after my last procedure (didn't work) and the pain management doctor said there was nothing else in his 'bag' to do for the TN. He is sending me back to the neurologist. I am tired of completing forms, explaining my pain and waiting for appointments. Where to go from here? I don't know but this site has helped me and I hope for you it is helpful. TN is not a commonly understood disease so the members of this site are a great resource. Best wishes and happy thoughts...
I know how you feel as well. I had every test done before the neurologist figured out what I had. I was diagnosed at the same time that my eyes were so dry that I was legally blind. A little bit after I was diagnosed, my boyfriend of 17 years was killed by a drunk driver. Then the tics started. That was almost too much for me to handle. I am taking Effexor XR for the depression and anxiety, gabapentin for the nerve pain, and Epitol for the tics. I cannot do the cortisone shot the neurologist wanted to because I am allergic to the steroids. I had a rough year in 2014. My faith was shattered for a while. I asked God why I would get this disease as well. I have been researching it online, which does no good. The information I found made me feel like I was different because they said tn was usually on the right side. Mine is on the left side, but I am starting to feel some of the pain on the right side now. I just wanted to tell you that you are not alone. This support group has been great for me. They have answered my questions and calmed my fears of being alone. I was 44 when I was diagnosed, but at any age this diagnosis is the worst. I hope you get some relief from your pain and live a better life. Everyone deserves to be able to live their dreams.
I started taking pills a few months ago with alot of relief but severe pain has come back in the past few days. Not all the time just when I am trying to eat (of course). Best diet I have ever been on. You don't eat because you are afraid to.
I have a doc appt tomorro so not sure if they are going to up the meds or try something new. Just keep adding to the drugs which I never wanted to do, but i will do anything to stop the pain.
I know what you mean, I'm 26 and I had a breakdown yesterday. My aunt knows someone that tried some type of laser treatment. It has really helped her. The website is lasermedcenter.com
I was 24 when the pain started over a year ago now, even on my most effective medications I still had low levels of pain and tingling everyday. Not to mention the rounds of terrible side effects. I either break down crying or get really angry over some little stupid thing at least a few times a week. I am on 2 antidepressants, seeing a therapist, and I still feel down and hopeless on a regular basis, but with the medication I feel indifferent to it more often than not. I try desperately not to think about the future, because if I ever build up a tolerance to the medications I am on now I am out of good things to try. Everything left has the high potential of causing more damage than good. But I know if my pain comes back full force I will probably do them any way, even if there is a 1% chance it could help. It is crazy. This whole mess is crazy, and terrible. Good luck friends!
You hang in there. I'm sure you are tired of hearing that but maybe the next step is surgery. Did you check into that route? I'm just starting the meds and just keeping my fingers crossed that they work. Keep reaching out here it is always good to let it out to others that understand your pain.
I feel the exact way you described. I am 42 and lost my husband to vine cancer last year and then atn came in after a dental procedure. I am desperate to find relief and a cure. Nothing totally works and I feel awful from the side effects. I have three girls to raise and cry everyday because I’m scared. I am seriously thinking about the cyber knife procedure but am worried it could make things worse. Just remember that you’re not alone
I keep hearing people talking about having a dental procedure done before this whole tn mess came on. I too had a root canal but when the doc administered the novacaine needle he hit the nerve. I almost went thru the roof. He said that hitting the nerve is a good thing. I didn't know about that since in my 50 some odd years i have never had that happen. But a few years passed before the tn came on. I don't know if they are related or not. All I do know is that this is not the way anyone should have to live. I am afraid to eat or brush my teeth. It is awful!!!
Sherelle said:
I keep hearing people talking about having a dental procedure done before this whole tn mess came on. I too had a root canal but when the doc administered the novacaine needle he hit the nerve. I almost went thru the roof. He said that hitting the nerve is a good thing. I didn't know about that since in my 50 some odd years i have never had that happen. But a few years passed before the tn came on. I don't know if they are related or not. All I do know is that this is not the way anyone should have to live. I am afraid to eat or brush my teeth. It is awful!!!
I just had gamma knife surgery earlier this month. Since then, I've had one terrible attack-day and have experienced minor pain on other days. I understand it takes 4-6 weeks for things to really kick in, so I'm still waiting ... Meanwhile, still taking my amitriptyline.
Also, just so all who have recently replied to this thread knows ... Jennifer Muir decided to leave this forum several weeks ago. She stated that she just couldn't handle some of the things discussed. Even though we haven't heard from her, please keep her in her your thoughts and prayers that she finds solutions for her pain.
Jennifer said:
I feel the exact way you described. I am 42 and lost my husband to vine cancer last year and then atn came in after a dental procedure. I am desperate to find relief and a cure. Nothing totally works and I feel awful from the side effects. I have three girls to raise and cry everyday because I'm scared. I am seriously thinking about the cyber knife procedure but am worried it could make things worse. Just remember that you're not alone
Whilst wishing everyone pain free days, I think cindylou you might be getting the Jennifers mixed up, as did I on first read.
CindyLou said:
I just had gamma knife surgery earlier this month. Since then, I've had one terrible attack-day and have experienced minor pain on other days. I understand it takes 4-6 weeks for things to really kick in, so I'm still waiting ... Meanwhile, still taking my amitriptyline.
Also, just so all who have recently replied to this thread knows ... Jennifer Muir decided to leave this forum several weeks ago. She stated that she just couldn't handle some of the things discussed. Even though we haven't heard from her, please keep her in her your thoughts and prayers that she finds solutions for her pain.
Jennifer said:I feel the exact way you described. I am 42 and lost my husband to vine cancer last year and then atn came in after a dental procedure. I am desperate to find relief and a cure. Nothing totally works and I feel awful from the side effects. I have three girls to raise and cry everyday because I'm scared. I am seriously thinking about the cyber knife procedure but am worried it could make things worse. Just remember that you're not alone
Don't think so, Moth ... I specifically recall Jennifer Muir from Jacksonville, FL, saying goodbye to the forum.
aiculsamoth said:
Whilst wishing everyone pain free days, I think cindylou you might be getting the Jennifers mixed up, as did I on first read.
CindyLou said:I just had gamma knife surgery earlier this month. Since then, I've had one terrible attack-day and have experienced minor pain on other days. I understand it takes 4-6 weeks for things to really kick in, so I'm still waiting ... Meanwhile, still taking my amitriptyline.
Also, just so all who have recently replied to this thread knows ... Jennifer Muir decided to leave this forum several weeks ago. She stated that she just couldn't handle some of the things discussed. Even though we haven't heard from her, please keep her in her your thoughts and prayers that she finds solutions for her pain.
Jennifer said:I feel the exact way you described. I am 42 and lost my husband to vine cancer last year and then atn came in after a dental procedure. I am desperate to find relief and a cure. Nothing totally works and I feel awful from the side effects. I have three girls to raise and cry everyday because I'm scared. I am seriously thinking about the cyber knife procedure but am worried it could make things worse. Just remember that you're not alone
I’ve been told by more then one doctor that I am not a candidate for the typical surgeries BC I am only atypical…guess atypicals are left to just live with pain forever…
Jennifer I know what you mean. But yes keep your faith because that is the only thing that has gotten me thru. Because of the medication makes me stutter more and jerk more so if Im not in pain I don't want to talk because the stuttering is embarrasing. I get embarrased and then I stutter more.