So I went and saw my GP yesterday. He told me my MRI was clean, and I broke down in tears right in front of him...he didn't know what to do...I said you don't understand..I'm at my breaking point...I'm 27, living with this ungodly pain that you just told me pretty much we don't know whats causing it...I'm not sleeping..every time I eat, I throw up because of the pain and/or med side effects...I'm gonna lose it soon...so after we just sat and he let me cry, he said we're gonna try some new meds, and if they don't help, I want you in with a new neuro to discuss steroid injections next week and then possible surgery...he said I don't care if I have to pay him money out of my pocket to stay after office hours...he said you shouldn't have to deal with this...that made me feel a little better..like maybe I'm not crazy...so I was started on baclofin three times a day, and ambien at bedtime to hopefully get me some sleep, along with the trileptal(1200 2x day), valium and dialudid(as needed for pain)...just needed to vent to some people who understand where I'm at...I'm scared about the possibility of the injections...and then the surgery....i have two young children and miss being able to my normal activities with them, but the surgey and injections really scare me as well...
Your story sounds like the beginning of mine… I was diagnosed with Tn August 2011 of last year. I have a husband and 2 kids. My X-rays and MRI showed nothing but all I know I had a horrible pain the I couldn’t bare I couldnt sleep I could barely brush my teeth or barely eat. The pain is hard to expln. It’s now August of 2012. Needless to say I’m hanging in there still telling as witness my story… Hang in there. Go to my page and read my story and see what helping me. I’m actually having another procedure Monday… Gotta stay strong for u and family.
I'm sorry it's gonna take so many meds to help you, but you are not alone on that.
What surgery is your doc referring to?
Ask specific questions on here about your injections -- the more you learn - the more YOU choose the treatments and the aftermath
Keep Posting!
I to also have severe pain all day long. I am taking Carbamazepin 200mg two to three times a day sometimes a little more. It doesn't take the pain totally away but it does take it to a low roar, I have also found that when the pain is extremely bad if I just sit in the dark and have no one talking to me and I can just sit and find that weird comfortable position I can lower the pain to manageable. I too am scared of injections and surgeries of anything on the face or head so I am working with my sister who is a physical therapist and she is so much help.. Sleeping at night for me has helped when I started wearing a ski mask to keep my face warm on that side, it is not pretty for my husband but he is sleeping anyway, but the sleep is so much more sound. I also keep a journal of everything I do. through this I was able to figure out what I was doing and how long before the pain started and then I could figure out what is it I can do and what I can not do. Cold is very bad for me, so my husband has to get the food out of the freezeer I can not. I willl be praying for you, don't give up it is about learning to live with it.
I’m sorry. It is scary when nothing keeps showing up for the cause of pain. It is great to hear you have such a compassionate gp. Simetimes it is better to have a neurologist look at your MRI scans, also they can make a better asstments on tests to do, medicine to try, and see if you are qualified for some surgical procedures or injections. I’ve broken down alot at my GP’s office because it can be scary and so frustrating. I really hope the new medications help you out and give you some rest. Sometimes the lack of rest just compounds everything. Hope you are in less pain or pain free soon.
Hi Meghan,
We truly understand what u are experiencing. My wife finally understood level of pain only after i went out on disability and scheduled the MVD surgery. Ive had for 8+ years and it was 6 + years into it before my wife understood . Pain is very lonely, most of us do understand because we (I) have broke down due to unceasing extreme pain.
I too had a clear MRI - except for lesion on brain stem. . I made a concious decision to have the MVD as sometimes the MRI doesnt show the compression and they do find one during surgery. They did in my case, but it was not cause.
Given what i knew, id do again. Given what i now know, i would consider, since success rate is high. But only after i tried what i am currently doing. I am doing upper cervical chiro treatment by a practitioner soley dedicated to upper cervical treatment. That is very important if you choose a nucca Dr.
You do not have to live this way. I understand, truly as one who lives it daily.
((((hugs)))) So sorry you have to go through this, Meghan! Thankfully, the doctor started responding and helping you out. Hope this doctor continues to stick with it, and help you no matter the cost. At least, there is a starting point here where he is giving you meds to hopefully help you get some MUCH needed relief from your pain!! And...MUCH needed sleep too!! Sooo important when dealing with chronic illness.. Always here if you want to vent or talk =).
Again, I am overwhelmed at the love and support shown to members when they reach a crisis point. I am sending you my thoughts and hope that you now gain the help you need. Good for you in that you laid it on the line with your Dr, it always works for me!
I was just recently diagnosed myself. I was up for 28 hrs in complete pain, no sleep.
My MRI has shown nothing which is good(ish) considering its nothing even more disturbing, but the fact that my nerve looked normal means I have the bog-standard TN.
I'm also on medication that brings my pain down to a low roar, though I have noticed doing calming activities has helped make it go away (even if its just for those few moments). I've been working on a lot of art projects lately. It seems to allow me to focus on something other than the pain.
I had the same situation, MRI came back clear and I burst into tears in the doctors office. I’m 26 and have been living with this for over 3 years. Turned to this site for support as I don’t know what else to do. I’m currently taking pregabalin and cocodamol for the pain and it doesn’t even touch it. I refuse to let it define me and hold me back. I’m terrified of falling pregnant and that possibly making the pain worse but my husband and I desperately want a baby. I hope you find some resolve soon and something good that happens for you x
Thank you for your support...I apologize for taking so long to respond...these new meds are really kicking my butt and not really helping the pain...actually heading to ER at new hospital per my GP this morning...will update my changes as soon as I can...Like you said I gotta remain strong for my family!! My kids are my world, and all I want is a day where I'm not in pain for them to be able to be normal with mommy again.
Felicia said:
Your story sounds like the beginning of mine.. I was diagnosed with Tn August 2011 of last year. I have a husband and 2 kids. My X-rays and MRI showed nothing but all I know I had a horrible pain the I couldn't bare I couldnt sleep I could barely brush my teeth or barely eat. The pain is hard to expln. It's now August of 2012. Needless to say I'm hanging in there still telling as witness my story.. Hang in there. Go to my page and read my story and see what helping me. I'm actually having another procedure Monday.. Gotta stay strong for u and family.
Thank you so much for telling me about your story as well...it helps to not feel alone in this journey...have had a few rough days so I apologize for not responding more quickly!! I was lucky enough to have my children before this awful disease became a part of my daily life, so I'm not really sure how to respond to that. It's got to be a hard thing to deal with every day...I wish you nothing but hope and support with whatever happens, and I will pray for you every day! Thank you again!
Jennifer Wheater said:
I had the same situation, MRI came back clear and I burst into tears in the doctors office. I'm 26 and have been living with this for over 3 years. Turned to this site for support as I don't know what else to do. I'm currently taking pregabalin and cocodamol for the pain and it doesn't even touch it. I refuse to let it define me and hold me back. I'm terrified of falling pregnant and that possibly making the pain worse but my husband and I desperately want a baby. I hope you find some resolve soon and something good that happens for you x
I am too...I was definitely nervous about posting this, but the outreach of the community here is amazing! I'm just learning right now I need to be as honest as I can be with these doctors because if not they just don't seem to get it.
Jackie said:
Again, I am overwhelmed at the love and support shown to members when they reach a crisis point. I am sending you my thoughts and hope that you now gain the help you need. Good for you in that you laid it on the line with your Dr, it always works for me!
I hope to become much more involved back in to arts and crafts which I used to love to do before my children were born...I was also looking into some meditation times and just need to get some me time back into my life, where I'm not feeling so bad that all I want to do is sleep...right now I feel like that's all I've been doing, but I need to try some new approaches to get this under control! Thank you for your story, again it makes me feel like I'm not alone, and that means a lot to me right now!
August Kelm said:
I was just recently diagnosed myself. I was up for 28 hrs in complete pain, no sleep.
My MRI has shown nothing which is good(ish) considering its nothing even more disturbing, but the fact that my nerve looked normal means I have the bog-standard TN.
I'm also on medication that brings my pain down to a low roar, though I have noticed doing calming activities has helped make it go away (even if its just for those few moments). I've been working on a lot of art projects lately. It seems to allow me to focus on something other than the pain.
Thank you!! I did get one night of good sleep, but then had a very very bad day after....then another night of no sleep :-( Per my GP I am going to ER at a new hospital because he said he is going to call ahead and have the neurologist he would like me to go to do a consult in ER and possibly even just admit me and begin a more intense treatment plan right away...a little nervous, but very hopeful at the same time.
living_free said:
((((hugs)))) So sorry you have to go through this, Meghan! Thankfully, the doctor started responding and helping you out. Hope this doctor continues to stick with it, and help you no matter the cost. At least, there is a starting point here where he is giving you meds to hopefully help you get some MUCH needed relief from your pain!! And...MUCH needed sleep too!! Sooo important when dealing with chronic illness.. Always here if you want to vent or talk =).
I'm not sure which surgery he is referring to exactly, but as soon as i do know, i will post! He is referring me to a new neuro group which he actually would like me to go to ER this morning because I only slept one night for 5 hours still, and am now getting strange symptoms like losing feeling in my legs and a few other things which are from the meds, but he still thinks they may admit me and begin more invasive treatments.
Kc Dancer Kc said:
I'm sorry it's gonna take so many meds to help you, but you are not alone on that.
What surgery is your doc referring to?
Ask specific questions on here about your injections -- the more you learn - the more YOU choose the treatments and the aftermath
Keep Posting!
Thank you for your story and support. I hope to be finding a new dr this week...my GP is sending me to new hospital this morning through the ER in hopes that they will admit me and be able to schedule me for a more invasive treatment ASAP...he is pushing as hard as he can because he's known me since I was 10 and he doesn't want to see me lose myself because of this disease.
Andy Rackerby said:
Hi Meghan,
We truly understand what u are experiencing. My wife finally understood level of pain only after i went out on disability and scheduled the MVD surgery. Ive had for 8+ years and it was 6 + years into it before my wife understood . Pain is very lonely, most of us do understand because we (I) have broke down due to unceasing extreme pain.
I too had a clear MRI - except for lesion on brain stem. . I made a concious decision to have the MVD as sometimes the MRI doesnt show the compression and they do find one during surgery. They did in my case, but it was not cause.
Given what i knew, id do again. Given what i now know, i would consider, since success rate is high. But only after i tried what i am currently doing. I am doing upper cervical chiro treatment by a practitioner soley dedicated to upper cervical treatment. That is very important if you choose a nucca Dr.
You do not have to live this way. I understand, truly as one who lives it daily.
Thank you for your well wishes...hopefully I will be posting some good news soon...unfortunately only five hours of sleep was my big feat for the weekend, with bad enough side effects, my GP is sending me over to ER this morning....at least it's at the hospital where he would like me to see the neuro group from! will update everyone soon...I really appreciate the support everyone has been giving! It helps me feel somewhat sane again!!
Kari said:
I'm sorry. It is scary when nothing keeps showing up for the cause of pain. It is great to hear you have such a compassionate gp. Simetimes it is better to have a neurologist look at your MRI scans, also they can make a better asstments on tests to do, medicine to try, and see if you are qualified for some surgical procedures or injections. I've broken down alot at my GP's office because it can be scary and so frustrating. I really hope the new medications help you out and give you some rest. Sometimes the lack of rest just compounds everything. Hope you are in less pain or pain free soon.
Thank you for the suggestions, I am definitely learning what I can and can not do from my former daily routine....boy is that frustrating when I aggrivate with things as simple as brushing my teeth to hard! Hope I can get this all under control soon!
dee said:
I to also have severe pain all day long. I am taking Carbamazepin 200mg two to three times a day sometimes a little more. It doesn't take the pain totally away but it does take it to a low roar, I have also found that when the pain is extremely bad if I just sit in the dark and have no one talking to me and I can just sit and find that weird comfortable position I can lower the pain to manageable. I too am scared of injections and surgeries of anything on the face or head so I am working with my sister who is a physical therapist and she is so much help.. Sleeping at night for me has helped when I started wearing a ski mask to keep my face warm on that side, it is not pretty for my husband but he is sleeping anyway, but the sleep is so much more sound. I also keep a journal of everything I do. through this I was able to figure out what I was doing and how long before the pain started and then I could figure out what is it I can do and what I can not do. Cold is very bad for me, so my husband has to get the food out of the freezeer I can not. I willl be praying for you, don't give up it is about learning to live with it.
Oh Meghan,
My heart goes out to you. My prayers going to the throne of grace on your behalf.
Only those of us who have endured the "monster" can truly understand.
I've been off meds since 2006 when I did the scariest thing of my entire life. MVD! I'm a
success story- but I know not everyone can say the same. Please research and research some more.
Then go with what you feel is your best option. The facial pain association told me I wasn't a particularly
good candidate for surgery because I was diagnosed with multiple sclerosis during my workup for TN.
But my TN was classical TN not the atypical type often associated with MS. After all my studies I felt
MVD would be the best option for me especially if I did this as the 1st surgical intervention. Yet because it was going
to be "brain surgery" I decided to wait until I had become unable to deal with the TN and side effects from the medication.
That day came and I visited the best Neurosurgeon I could find. He encouraged me that I was a very good candidate for a
successful surgery and pain free outcome.
Whatever your choice I pray you find relief. Know that you are not alone. Feel free to contact me if you think I could help
you in any way.
Sincerely
Martha Garrett