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lamerex4
@lamerex4

Posts: 34
Joined: Jun 24, 2016

Trigeminal Neuralgia*

Posted by @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.

Liked by annamh

REPLY

Hi @lamerex4,
It must be so hard to see your father suffer with this pain. Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections http://mayocl.in/1Mz18C8 You may wish to read this older discussion thread where Connect members @cagon @jwhite64 @calebba @jenkob @zane @omlee @nomore are talking about their experiences with treatment http://mayocl.in/28SOKk5

@Restless67 do you have any suggestions for @lamerex4?

@lamerex4, does your father live with you? Are you his main caregiver?

Thank you for the link to the older thread; it did not come up when I did my search. My father does not live with me; he lives independently in a retirement community. He is very active and social when he is feeling well, so he is extremely frustrated that he cannot do the things he wants to do. His PCP does not appreciate the severity of the situation nor the urgency to find relief. I am a retired RN so I am a strong advocate for him and will not stop searching until he finds relief.

Your father is lucky to have you advocating for him. Is there any explanation why Amitriptyline stopped being effective after 10 years?

It is my understanding that over time the drug loses its efficacy due to increase in the body’s tolerance. He was taking as much as 60 mg per day but still having pain plus at that dose he had slurred speech and had difficulty functioning.

It sounds like you may have consulted with more than one neurosurgeon, but in any event, getting a second (or third..) opinion might be helpful. There are new options for remote second opinions as well which could be helpful in your father’s case.

Keep track of his symptoms and write down their severity. Ask the doctors what your options are in terms of other treatment options and medications as well as what can be done to mitigate the side effects he is experiencing. This list of question might help: http://psychcentral.com/lib/questions-for-your-doctor-about-medications/

The Facial Pain Association may also be a source for information and support: http://fpa-support.org/

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.

He has found not sleeping on his affected side seems to be helping, however, he has an old total hip on his unaffected side that hurts when he lays on it. Now that he is back on his Nortriptyline (stating amitriptyline earlier was an error on my part), he is doing better. We have not consulted with more than one neurosurgeon.

i also had traditional and gamma knife surgery. to keep from having flares i have been on neurontin 1200mg 3 times a day. if flare comes i increase to 1600mg and add codeine if severe. this has worked for me for last 20 years. good luck

Liked by lamerex4

@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 understand your feelings completely. I was in a 2 year evaluation period with 3 consecutive gastroenterologists before I was accurately diagnosed. What helped me the most was joining a chronic pain/chronic illness support group. There is a National Website on this group. I will try to find the URL and send the web address to you.

@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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Pain makes people very tired. So does the anxiety of a medical issue that isn’t completely diagnosed or you don’t feel the security of good medical care being available….. Still looking for that website for you. I have to rest midday everyday even though I am now on
medications that help me a great deal. I’m currently reading, “Chronic Pain: A Way Out by Stephen Colameco, MD. Our local hospital also offered a completely free class about Chronic Pain/Illness. We met once a week for 14 weeks. There were presentations from specialists…….amongst the group we had a lot of sharing about our experiences and doctors.

@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.

@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!

Liked by kathrynfd

@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

@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!

@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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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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