Wow, those first couple of days after the extractions were great, no TN pain of any kind and I started to think that the pain must of been from my teeth only, until last night and this morning. TN pain is not only back, it’s now on the right side, which means it’s bilateral.
I realize how stupid this must sound but I would swear I am having phantom tooth pain exactly where that tooth was removed on the right side. And I think I just now realized what caused this episode of pain. I take my morphine on a 5am and 5pm schedule. Well, while taking my 5am dose minutes ago I realized I had forgotten my 5pm dose last night. Back on track with my meds so lets hope this pain will not develop into a full fledged episode.
But it’s not just pain in that missing tooth area, it’s also in the forehead on that side all up and down the upper jaw on that side as well. Something I have noticed though, and you all can let me know if you have experienced this same thing or not is that when the first branch of the nerve is firing, the second and third do not, etc. Meaning that when I have pain in my forehead I do not have it in my cheek or lower jaw, again when it hurts in my cheek it doesn’t hurt in my forehead or lower jaw, etc. Have you all noticed this as well or I am the only one?
Gosh darn, I cannot tell you how utterly depressing it is to know for sure that I have bilateral ATN, sitting here bawling as I type this. I mean, why can’t my arachnoiditis, fibromyalgia, etc., etc. mixed in with all of Andy’s medical problems be enough for me to deal with? I know this sounds really, really pitiful guys but you have no idea how much we wanted this to just be a tooth problem. We know God says he will never give us more than we can handle but since we have just lost our home on top of this I am seriously questioning His wisdom right now, and it truly pains me to even think such a thing.
I know very well that there are tons of folks worse off than we are so why I am still crying so hard knowing full well this is a situation that I have no control over. Still I want more than anything for this ATN to just go away and never come back. In serious need of my friends here, their support, their wisdom, and more than anything their loving friendship! Truly do love you all!!
Oh dear...Ali that is truly disheartening to hear.. I do get that pain where ther is no tooth still and it's been three years since the extraction of said tooth. I do also get phantom pain on the left side of that same tooth since the beginning of my ATN issues, tho not anything significant to speak of.
It really does seem to occur that we have all these things happen at ONE time. For me it was, hysterectomy-05,sinus surgery-06, gkrs-2-08. And in between basel cell carcinoma on my nose removed in 11-09 plus hyatal hernia diagnosis, reflux. Man, I just felt like,,, can I get a break please???????????????????
I am not trying to minimize at all what you are going thru dear. I just sayin that overwhelming heavy feeling that you have right now... I get it.
I sure do hope and pray this will be the end of the streeeeamm of unwants for you Ali. I really do. Love, Min
Thanks darling! You really are a sweetheart and made me feel better. It has to stop sometime right??
I also had basal cell carcinoma but mine was on the bottom lip which kept returning after minor surgeries so they finally removed the entire bottom lip and reconstructed a new one for me. Thanks for your support and friendship, love ya dear!!
Ali
Ali, I really feel for you. Having just got through an episode of the most unbearable pain I have ever had. To hear you now have it after all the hope it would be your teeth. Just keep on top of your meds. I missed one the other day to my horror. The pain came back just to remind me it was still there and its only the meds keeping it at bay. I now know the true meaning of pain management. Hope you are feeling better. xx
I know how you feel, and I think you have every reason to feel the way you do and be crying. Im 21 and cry even when im not having an attack as i cant shake the feeling that this is going to kill me, and sooner rather than later. Yeah there are other people that are worse off than you, but your not them...you have bad enough things to deal with including the worst pain known to man, dont feel bad for crying and feeling "sorry for yourself" I think all of us on here understand how you feel.
Min, Jackie, Maggie, Janey, Lucy, and Mica, thanks so much for your support, kindness and friendship. I suppose it was somewhat of another pity party, not sure why I feel that way at times but I do. It sure it nice knowing that there are other who go through the very same things that I go through. Min I am really sorry to hear that you still have your phantom pain over 3 years later, wow!! Jackie dear I did know about your liver count worries but had no idea about the breast cancer or the death of your father, you poor, poor thing. I am so very sorry to hear about your father’s passing!!! Janey so sorry sweetie to hear about your unbearable pain episode, it can be horrendous I know. And we must keep to our med schedule!! To Mica the rest of of you, thank you so much for understanding how I feel and knowing that there really is a reason for my crying. I really do count on your support and friendship during these very trying times! Much love to you all!!!
Oh Ali, this is such crummy news! It does seem unbelievably cruel that you thought you might have put TN behind you only to have it appear on the other side as well. That is absolutely horrendous. I don't blame you at all for throwing yourself a pity party; a situation like this certainly calls for one. Plus, having a good cry and acknowledging how utterly miserable and exhausting this condition can be can actually help you to feel better. I'm with you in that remembering that there is always someone else out there in worse shape than me does help to put things in perspective; it's also important to keep in mind that your response to this new development is appropriate and valid. You do have so much on your plate already and you don't deserve this. Even ONE of those other things is more than enough to deal with and my heart goes out to you. The pain is bad enough; losing your home is too much. I am so sorry that you have to go through this.
You are not alone in having pain that stays focused in only one area for a while. My pain tends to settle in one spot and then move onto another one after a few minutes/hours/days. It's kind of nice, actually, because it feels like I get a bit of relief when it switches places. It does seem like the mechanics of bilateral TN are especially mysterious. I have symptoms that make absolutely no sense in terms of anatomy and what is known about this condition thus far. All that I can do is tell my doctors the truth and wait for medical science to catch up and discover the cause, and most importantly, how to fix it. In the meantime, we just have to hang in there, somehow.
Please know that I am sending you good thoughts and wishes for well-being to help keep you afloat while you find a way to deal with this new challenge. You are stronger than you think and you will make it through this.
You are such a sweetheart and your reply made me feel AWESOME! So thanks for that girlie!! You know even though my pain is under control now, I still have outbreaks that last minutes to hours to even overnight, this is exhausting just because I am constantly bracing for the next wave of excruciating pain to hit me, you know?
But the more I think about loosing our home, I can see now that it will be for the best. We have never gotten along with our daughter's husband and buying a home with him was really stupid on our parts, but we did it so we could spend more time with our grandson and our daughter. Chris I am a Christian, but this man is a MORON with a capital M, and being around him just brings out the worst in me, and I really hate that! I am not this snippy woman!
Really looking forward to my surgical appt. on the 8th, will let you know. Much love dear!
I too am a believer and sometimes feel that God has me confused with someone else! I do not think any more can be stacked on me. However He did promise to heal the sick. Now that word used does not mean the physically ill but He promises to heal "the emotionally exhasuted one." It sounds like you are there and my prayers are with you. I want your spirits up so that your body can fight this horriboe disease. Pleasee frrl my prayers and accept the peace they bring.
i have similar pain episodes, but usually there is a nerve root pattern. i also have muscle involved from the scar tissue. bad things happen to good people. usually its a home run. florida is getting cooler which really helps the nerves not the muscles.
its time for you to improve already!
by the way does the implanted simulater really help and which areas?
lots of hugs coming your way.
My hubbie is really stressed from my non improvement. or lives have completely changed. How is yours coping.
I get pain in “teeth” that are a dental bridge…I get pain that seems to center in a tooth but if I put pressure on the tooth with my song, I realize the pain is radiating across my cheek. The phantom pain makes perfect sense to me. As I sip coffee, short electric shocks go through my face b/c of the warmth of the coffee. And next year, a relapse may be on the opposite side. What I take comfort in is that every case of TN seems to be unique, but similar. I have symptoms that now fit both ATN and TN…I feel like it’s vacillating. My comfort would be in knowing what to expect, what is normal, etc., and this keeps leaving me guessing.
hi, i thought you were better! may i ask what meds and other methods worked like pumps to limit pain. best wishes.
AliBaby said:
Min, Jackie, Maggie, Janey, Lucy, and Mica, thanks so much for your support, kindness and friendship. I suppose it was somewhat of another pity party, not sure why I feel that way at times but I do. It sure it nice knowing that there are other who go through the very same things that I go through. Min I am really sorry to hear that you still have your phantom pain over 3 years later, wow!! Jackie dear I did know about your liver count worries but had no idea about the breast cancer or the death of your father, you poor, poor thing. I am so very sorry to hear about your father's passing!!! Janey so sorry sweetie to hear about your unbearable pain episode, it can be horrendous I know. And we must keep to our med schedule!! To Mica the rest of of you, thank you so much for understanding how I feel and knowing that there really is a reason for my crying. I really do count on your support and friendship during these very trying times! Much love to you all!!!