Hi there....I am new here, and about to undergo MDV surgery on the 17th. I am obviously miserable. On top of searing pain, I am coming off of cymbalta while increasing topamax (which isn't even working). I am now getting the shocking pain in my eye ball as well as the rest of the nerve, which is just fantastic, leaving me with a constant feeling of something in my eye. I can't rub it though, cuz it will set off another shock.
Well blah blah I guess all the pain stuff you know, right? The worst part about it is no one understands. Because, as I am sure you well know, it is something you can't see. "Wait, you are fine now! So lets go!" No, you don't get it. I can't. I won't be ok." UGH.!!!!
So any advice for anything would be helpful. This is my second go-around, but this time it hit hard and fast and broke through meds real fast, which is why I am opting for surgery.
Oh and numbness...my face, inner cheek and sometimes down my arm in into my hand gets numb...is this normal?
I know I haven't given all of my information yet in my profile/page/whatever, so if you have any questions, I am an open book :)
Hi Jennifer, I'm so sorry that you are going through all this. I totally understand when no one knows how much pain you are in because you can't see the pain. This is a debilitating and excruciating type of pain . One thing that did help me was accupuncture. I found someone that specialized in facial pain and I was terrified of going because I wasn't sure if it would do more damage. But she was very gentle and it actually helped me a lot. I wish you all the best on your MVD surgery, Just know that we all support you and understand how much pain you are in and how frustrating it is that other people don't understand...
Thank you so much....I actually do plan on trying accupuncture at least once to calm things down before surgery :) I will keep you posted. Thanks again :)
Ingrid said:
Hi Jennifer, I'm so sorry that you are going through all this. I totally understand when no one knows how much pain you are in because you can't see the pain. This is a debilitating and excruciating type of pain . One thing that did help me was accupuncture. I found someone that specialized in facial pain and I was terrified of going because I wasn't sure if it would do more damage. But she was very gentle and it actually helped me a lot. I wish you all the best on your MVD surgery, Just know that we all support you and understand how much pain you are in and how frustrating it is that other people don't understand...
Jennifer.....very sorry to hear that you are going through a very difficult time . I know it doesnt help much but we have all been through it and "We" do understand. Its impossible for anyone other then a TN patient to know what you are going through. No one could imagine the pain and the effect that it has on your life. I would say accept that fact realizing our disease has no outward indications to show what we are going through. Have been where you are where the meds have absolutely no impact at all. Tegretol became as effective as jelly beans for me. I had the electrical shocks for weeks and months at a time every 2-3 seconds. MVD surgery saved my life and gave me my full life back. Been totally pain free for 30 years. Stay strong and find your answer. If its MVD surgery then I just suggest you get the best most experienced neurosurgeon that you can find. I live in PA and can give you my neurosurgeons name if interested. Good luck and hoping the pain subsides...ED
Good morning Jennifer, You are right, the every day person will not and cannot understand what you are going through and that can be extremely frustrating. Hang in there. Numb can happen although I did not experience it anywhere but in my face in the beginning. My TN was not controlled with medication and I lost count of the combinations. How many mgs. of the Topamax are you on right now? I had MVD a year ago and it did fix my TN however, I have had some other issues from the surgery -- mostly headaches which I will start Botox injections for next week. I take Topamax for the headaches and take 100 mgs. currently. I was up to 150 but could not handle the side effects. The Topamax lessened the severity of the headache on the left side of my head but has not helped on the right side (I just found out yesterday I have Mastoiditis). With the Topamax, I have lost 35 lbs. since February -- I needed to loose the weight any way -- but you need to make sure that you are eating balanced and take vitamins and drink something like Gatorade to keep your electrolytes in order. That is where I messed up and got muscle cramps. I see that Ingrid mentioned acupuncture -- I did that also and yup -- give it a try. Another thing that worked for me was mediation and a god hot bubble bath and a massage. Spoil yourself a bit before the surgery and afterwards also. The members of this group are supportive and do understand what you are dealing with on a daily basis. It is a great place for cyber hugs too when you need one. Hugs from Teas -- hang in there dear -- we are always somewhere near and best of luck on your surgery. Keep us updated.
I VALIDATE YOUR FEELINGS!!!!! BY THE POWER INVESTED IN ME BY THE ALMIGHTY AND THE KNOWLEDGE THAT YOU GOT TO GIVE THIS A TRY AND IT IS SCARY AS HELL RIGHT NOW, I VALIDATE YOUR TICKET!!!!!NUMBNESS, PAIN, NOONE UNDERSTANDS, I VALIDATE IT ALL!!!!!!
