Learned on Tuesday I have a functional pituitary tumor. while it is not cancer it has caused all sorts of problems. A major one being that the dopimaine levels in my brain are now way too high. The doctor wants me off the neurontin as anything that can change brain chemistry can be a potential problem while under going treatment. While I was able to go off all the narcotics after my MVD I tried to go off the Neurontin as well and the pain came back. What medication do you take for TN that does not cause a change in brain chemistry??? I am in recovery so I do not want to be taking narcotics. I feel like I am in a rock and a hard spot and am ready to cry! HELP!
Sarah, it sounds as though you are between that rock and hard spot. I am too new to all of this to have any suggestions for pain relievers that don’t alter brain chemistry. I just wanted to let you know that I care and that I will certainly lift your name in prayer.
James, your poem really speaks. Very moving.
I am so sorry to hear what you’re going through Sarah, it’s been ages since I’ve been able to chat with you and I hope your boys are being a support network for you right now!
I totally agree with Nancy, there ARE non-narcotic pain meds on the market being used for neuralgias - please ask your doctor about those?
HUGS HUGS HUGS to you Sarah, please know I’m thinking of you and keep us updated on what is happening?
Love & Peaceful thoughts your way,
Kerry xx
Sarah,
I am so sorry. I don’t understand how neurontin changes our brain chemistry. But I’m praying your pain doesn’t get any worse while the problems with the tumor are resolved.
Liz
Aw Sarah,
This all stinks.I don’t know anything about dopamine or how to get it down, so I can’t offer any pearls of wisdom there and obviously if you can get this to shrink then that’s great, but from what I’ve read here and over on BT it’s finding something to tide you over without changing your chemistry while avoiding the narcs that’s going to be the difficult thing.
I wish I could offer you a suggestion or two that might be of use to you, but I know little to nothing about the ET, and my experience of ATN was actually caused by the lyrica and gaba, and it was just heat compresses that helped with that, before I came off them, nothing else touched it and I’m sure you’ve followed all those usual options long before now.
I’d come up with a few suggestions, but looking at them a bit more closely they all work by boosting your dopamine levels, or affecting your brain chemistry one way or another so I’m not even going to list them.
I am wracking my brains sarah, and I wish I could help more, the only things I can think of just now are tens or acupuncture, (not the permanent acupuncture, that was one of my thoughts, but it’s to be avoided because that can put your dopamine up too, apparently that’s how it improves parkinsons) not sure if normal pins screw with your dopamine level, so that might be worth looking at, but I don’t know if your health care will cover something as controversial as that, I don’t know how expensive it is there, but it sure isn’t cheap to have it done on your own coin here!
I am at a loss as to what to say or suggest, and as Sabrina said I really hope your doc can offer you some kind of alternative meantime until you can get this thing treated and under control.
Please know that you are in my thoughts and my prayers.
Gracie x x x
Learned doing a web search Oregon Heath and Science University (OHSU) has a unit that has a multi discinplinary (sp?) team that deals with just pituitary tumors. Thing though is they do not take patients who do not have health insurance. I am in the lottery for medicare. The name draw is this coming Monday. Am praying like mad my name is one of the one’s drawn. OH, OH, the skull based neurosurgeon ( Dr Johnny DelShaw) on the pituitary team works along side one of the countries leading TN neurosurgeons. ( Dr Kim Burchiel) I believe this is doable. Not going to be easy, but least can be done.
Like you say at least it can be done, I will be praying that your name is the first one out of the draw, please keep us posted.
x x x
It pains me to hear this, I’m so sorry. I wish I had something wonderful to tell you. What about Dronabinol? I don’t think its a narcotic. I hope you feel better, and wonder offer a hug if I could.
I am sorry for the insurance issue you are going through. I lost me insurance when I lost my job due to the illness and I applied for assistance and they said my husband made too much money on unemployment last year. I understand I am on lyrica and it is helping with My fibromyalgia and TN. I hope your name gets pulled and you get the surgery you need. I feel like crying a lot these days.