1. < Brain & Nervous System

Trigeminal Neuralgia*

Posted by lamerex4 @lamerex4, Jun 23, 2016

My 92 year old father was diagnosed with Trigeminal Neuralgia more than a decade ago. For a long time Amitriptyline kept the 'strikes' at bay. He became symptomatic again last October. In March they did a Gamma Knife radiation treatment. This halted his symptoms for about 6 weeks. Two weeks ago he started having daily 'strikes' again. His PCP switched him from Amitriptyline to Lyrica. Now that he is weaned completely off the Amitriptyline and on the full dose of Lyrica he is having 'strikes' several times a day. The local neurosurgeons won't consider surgery, but we are desperate. Any insights at all on any therapeutic modalities would be appreciated. Acupuncture was not effective.

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Tlgreg60 | @tlgreg60 | Aug 6, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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I live in Augusta ga. I am new to the area and have seen several doctors all of which have dropped the ball. I just seen a neurologist and Friday had brain scan with contrast. I had major anxiety attack no am virtually alone figuring this out. My husband is not supportive. They seen white matter on first MRI. More than what is acceptable for my age. This started June 1 and I'm beyond stressed out. I so unsure about how to navigate through all of this and who to turn too. I called s support group they were not accepting new patients. It's so difficult.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 6, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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@tlgreg60 I'm so sorry to hear that you are not feeling heard by your medical team. Since you cannot find a support group, please use Mayo Connect as your support group. While I'm not familiar with your disorder it sounds like it has caused you pain as well as frustration and anxiety and that is all understandable. Please keep in touch, we care!

REPLY
Tlgreg60 | @tlgreg60 | Aug 6, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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Thank you I appreciate that. It's really been scary. Trying to minimize research because I don't know but keep finding MS symptoms and how late k set is extremely serious. Ughb

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 7, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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@tlgreg60 My prayers and best wishes go with you today!

REPLY
caretothepeople | @caretothepeople | Aug 8, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

Jump to this post

So sorry to hear about the frustrating experience you're having @tlgreg60.

The Facial Pain Association may have information or resources to help. They have a listing of MDs in Georgia and maybe if you reach out to them they could point you in the direction of further assistance: http://fpa-support.org/

Living with Facial pain is another support group that might be helpful: http://www.livingwithfacialpain.org/

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lamerex4 | @lamerex4 | Aug 8, 2016

Has anyone ever tried a Fisher Wallace Stimulator® for relief of pain?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 8, 2016

Good question @lamerex4. I might suggest you post your question about the wearable stimulator (Fisher Wallace Stimulator®) to this discussion where people have been talking about their experiences with implantable stimulators http://mayocl.in/2aOZaR0

I'm bringing @zjandre @ladyjane85 @bekie @marieh @elltd and @Restless67 into this discussion.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 8, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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Hi @tlgreg60. I moved the discussion you started about Trigeminal Neuralgia to this existing discussion so that you can also meet @lamerex4 and @uncbball.

Tlgreg - you may also be interested in reading In these discussions related to multiple sclerosis where you'll meet @manysilver @jessejames4534 @carolyns and @lal2

- https://connect.mayoclinic.org/discussion/i-have-had-a-batch-of-seemingly-unrelated-symptoms-for-a-few/
- https://connect.mayoclinic.org/discussion/are-my-symptoms-early-signs-of-multiple-sclerosis/
- https://connect.mayoclinic.org/discussion/multiple-sclerosisdepression/

Being in the doctor/care hamster wheel is exhausting. You mention that you had an brain scan with contrast last Friday (Aug 5). Who will you see to follow-up on the results of the scan?

REPLY
Tlgreg60 | @tlgreg60 | Aug 9, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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Hi thank you for including me. I just got results I DO NOT have MS. but hardening of the arteries. I have a very strong family history of vein vascular issues. However I am still experiencing facial pain in the implants. <br><br>

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 9, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

Jump to this post

So glad to hear that you don't have MS, tlgreg. Have you been diagnosed with atherosclerosis? http://www.mayoclinic.org/diseases-conditions/arteriosclerosis-atherosclerosis/home/ovc-20167019

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