September 20, 2012 at 5:25 pm #43014
Laura – Have you been diagnosed with Trigeminal Neuralgia?You must be logged in to reply to this topic.
September 24, 2012 at 3:36 am #43015
I’ve been diagnosed with “Atypical facial Pain.” But I also have non-pain symptoms that are not typical of Atypical Facial Pain. The doc has recommended peripheral nerve stimulation for the pain and has prescribed Pristiq for the other symptoms.You must be logged in to reply to this topic.
September 24, 2012 at 9:09 pm #43016
Laura, I would love to share this link with you that might be helpful re: your diagnosis. I’m not sure about the peripheral nerve stim for this myself, however the site may contain more information that you’re looking for:
OHSU Facial Pain Diagnosis Tool https://neurosurgery.ohsu.edu/tgn.phpYou must be logged in to reply to this topic.
September 25, 2012 at 3:17 am #43017
Thank you. I’ve taken that test before. It says I have TN2 which is another name doe Atypical Facial Pain. I’ve found some explanations of Occipital Nerve Stimulation. From what I can gather, that is a type of Peripheral Nerve Stimulation. So I guess that for the trigeminal nerve it would be similar, but focusing on the trigeminal nerve not the occipital nerve.
If anyone knows of any study results available for outcomes with the trigeminal nerve – please share the weblinks or reference info.You must be logged in to reply to this topic.
September 25, 2012 at 5:34 pm #43019
Laura, have you heard of Cefaly? http://www.cefaly.ca/#howitworks
I can’t comment on it at all except to say that it was just brought to my attention recently. Teri Robert here has used the device and didn’t find it at all helpful, but I’m wondering if it might be what your doctor is talking about?You must be logged in to reply to this topic.
September 26, 2012 at 12:02 am #43020
No I haven’t heard of that. Thanks for sharing the link. The stimulator my doctor is recommending is one that is implanted under the skin.
But I will read more on Cefaly and see what it is about.You must be logged in to reply to this topic.
September 26, 2012 at 9:53 pm #43021
Laura, there are two types of implanted stims that your doctor probably refers to: occipital (back of the head), and a combo of occipital and peri-orbital (above/around the eye). The combo seems to have a much better track record and better results in research. This is very different than the link I sent you.
I was offered an occipital stim (in the days before the combo was offered) and refused it. In my case, I have had radiation to my head and neck and a greater chance of head and neck cancers. Combine that with an autoimmune disease that makes it more likely for lymphoma, and I need to have occasional MRI’s. The stims make it impossible to have these kinds of tests. There are also other innate problems they come with, some which can be worse than others. Just ask a lot of questions and be sure you get the full picture before making a decision.
Keep in touch with us and let us know how the decision making process goes!You must be logged in to reply to this topic.
January 16, 2013 at 7:01 pm #43022
I had a nerve stimulator trial. One lead was placed above my eye and one over my cheek. The upper lead provided no relief. The lower lead soothed the pain in my cheek. Neither lead addressed the pain around my eye. So I was not recommended for the permanent implant.
Was the radiation you received performed for trigeminal neuralgia? My neurologist has recommended that now.You must be logged in to reply to this topic.
January 17, 2013 at 4:59 am #43023
Hi Laura – No my radiation was to my thyroid gland. However, they gave me a systemic dose of radioactive iodine to accomplish that. I took a couple of capsules of radioactive material which was digested and absorbed, then went throughout my body before settling into my thyroid gland. I had a whopper of a dose, and a number of side effects from the treatment and was told that I will likely always be at risk for problems as a result.
I have never heard of a nerve stim placed over your cheek. Usually they are either occipital only, or a combination of supraorbital (above the eyebrow) and occipital, and a small study seemed to indicate that this type of stim placement seemed more effective than others that were looked at. Have you considered looking into this combination of treatment?You must be logged in to reply to this topic.
January 17, 2013 at 11:35 pm #43024
I have trigeminal pain – so that’s what determined the lead placement. My pain is right under the upper orbital notch of my left eye, along the bottom half of the the orbit of my left eye, and in my left cheek bone nearer my nose. Since I don’t have occipital pain there is no reason to stimulate the occipital nerve.
I hope you never have to deal with lymphoma. I had chemo for that in 1992. That lead to premature menopause. The the change in hormones precipitated my migraine and face pain.You must be logged in to reply to this topic.
January 21, 2013 at 6:45 pm #43025
Laura, I think it’s interesting to note that the stims used for Migraine do not depend upon pain in the exact areas that are being stimulated. I’m really not sure that they understand completely how it works – referred pain I think plays a part – however occipital nerve pain and/or supraorbital pain are not the actual reasons for the stim placement when it’s done for Migraine. It’s simply that they found that placing the stim leads in these locations was helpful for some of those with Migraine.
I am so sorry to hear about your lymphoma and the premature menopause. I too pray that will never be something to worry about in my future. However I do have the experience of a treatment making me worse – two in fact. So do understand the frustration that goes along with knowing that a choice you were forced to make for one thing, made your life so much more difficult. It was hard for me to come to terms with.You must be logged in to reply to this topic.
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