NeuroTalk Support Groups - Hello, I am new and intorducing myself

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Hello, I am new and intorducing myself

Hello, I am Missey and I am a 43 yrs old. I have suffered with TN for 10+ years. I was a victim of a home invasion and had my mandible shattered, I had plates put in face and then removed due to infection. I am not sure if the trauma or surgeries that I have had has caused my TN, at this point that does not matter, what matters is that I now have TN. I was first diagnosed through Mass General with Osteomyelitits and no one believed me. I have had at least 20 Ct scans, MRI's over the past years. I was put on Tegretol for Bipolar, which in hind site was a God send, cause that controlled my pain for many years. I started at 100mgs once a day, as of now I am on 400mg in morning and 500mg at night. I am having side effects from meds and no relief anymore, my Level is 11.5. I started treatment in Boston at Mass General and now I live in PA and can not find a DR that seems to know how to help me. I am at wits end with what seems to be constant pain and no relief in site. I have had nerve blocks which to me was the worst possible thing to go through in the world. Needless to say no relief. So now I find myself researching and learning all I can about TN, since I must be my best advocate. So that is my story and I am sticking to it..

Quote:

Originally Posted by MisseyP (Post 1143339)

Hi Missey,
Just wanted to say hello and welcome to the forum. I have been around here for years and have found alot of helpful advice and support. My neuropathy is damage from Lyme Disease. My pain mgmt doctor, who I have been seeing for 10 yr, always has something new to try when pain gets worse. Yrs of Neurontin, then Lyrica, then ESI's...also take many other drugs as needed and have done endless, less conventional treatments like hypnosis, accupuncture, massage therapy, etc. This winter the pain and neuropathy in face/head/neck was bad so I did weekly lidocaine injections that helped quite a bit. Find a good pain mgmt doc.( NOT a neurologist). PM docs have a much wider array of treatments to offer, at least in my experience.

I grew up in Lexington, MA and know Mass General well. Perhaps ask your doc at Mass gen for a referral to someone in PA? If not, get a local doc to continue treatment from your Mass Gen doc.

How terrible that a home invasion caused your injuries. That is just a horrific story and I can only imagine that the psychological issues may be as bad as the physical.

If there is anything specific you want to ask, am happy to try and help.
Take care, Diandra

hi to both Missey P and Diandra . Missey are you seeing a neuro doc or a pain specialist / pain management doc ? those are the best to seek treatment for this ugly t.n. monster. sorry about the house invasion :( they are happening more and more often. sending low pain and Peace
BMW

P .S . Diandra I have lived in Ct ... near Bradley airport so Hi homey ;)

Hi Missey,

I am sorry to read your story, and the reason for your coming to join us.

Your Tegretol for Bipolar Disorder once helping with TN pain mirrors my Topiramate for Chronic Cluster Headaches having the same beneficial side effect - along with the bad ones. Luckily, I still get some pain reduction as I also have Chronic Neuropathic Facial Pain and Paresthesia.

You have the right attitude, researching your issues. I just hope you find a Doctor, PM or Neuro, who can help you as much as my PM team helps me. Coming here certainly opens up a great support network.

Have you checked out our Bipolar Forum?

Dave.