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@numbskull

Posts: 7
Joined: Apr 29, 2018

trigeminal neuralgia and parkinson's diagnosis

Posted by @numbskull, Tue, Sep 18 3:26pm

Can any doctor out there help me? I have been diagnosed with Trigeminal Neuralgia and Parkinson's Disease. Is it possible I have Microvascular compression syndrome?

https://www.news-medical.net/…/Microvascular-compression-sy…

tag words: Blood, Brain, Clinical Trial, Hospital, Nerve, Neuralgia, Neurology, Parkinson's Disease, Tremor, Trigeminal Neuralgia, Vascular

REPLY

Hi, @numbskull – I'd like to applaud you for being proactive and looking into microvascular compression syndrome and a physician who can treat both trigeminal neuralgia and Parkinson's.

I'd like to invite @krissylamb @jenniferhunter @gregk @dolly715 @susan62 @oronogo and @hopeful33250 into this conversation to share their insights.

Have you experienced symptoms that you've read occur with microvascular compression syndrome, @numbskull?

@numbskull Hello Sharon

I see that you just recently joined Mayo Clinic Connect and I'd like to welcome you. I am sorry to hear of your many diagnoses.

Since you mentioned having Parkinson's so I assume that you have a neurologist. Have you talked about microvascular compression syndrome with your neurologist? That might be a very helpful discussion.

Here is a link that describes this disorder, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793889/ Please click on the link and read the description of symptoms and see how they compare to what you are experiencing.

What symptoms are you experiencing now that lead you to feel you might have this disorder?

@hopeful33250

@numbskull Hello Sharon

I see that you just recently joined Mayo Clinic Connect and I'd like to welcome you. I am sorry to hear of your many diagnoses.

Since you mentioned having Parkinson's so I assume that you have a neurologist. Have you talked about microvascular compression syndrome with your neurologist? That might be a very helpful discussion.

Here is a link that describes this disorder, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793889/ Please click on the link and read the description of symptoms and see how they compare to what you are experiencing.

What symptoms are you experiencing now that lead you to feel you might have this disorder?

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@hopeful33250 Hi Teresa,

Yes, I have been to 3 neurologist this past year. The most recent being a movement disorder specialist. I Googled “Trigeminal Neuralgia and Parkinson's Disease” because I wanted to know if they are related in some way. At the top of the google list came “Parkinson’s disease: an inquiry into the etiology and treatment” https://www.ncbi.nlm.nih.gov/pubmed/22053261

I asked this question to my neurologist, Could it be helpful to investigate the link between Parkinson's Disease and Trigeminal Neuralgia?

The response was, That is an interesting observation you make but as a clinical neurologist, I do not do research. An academic institution might be a great place to pursue this (like University of Michigan).

My symptoms are Tremor and cogwheel rigidity on right side of body, Parkinson's. Trigeminal Neuralgia is a constant numb burning pain with intermittent shooting pains into mostly left side of face and eyes. I have a feeling like I am wearing a party hat with the elastic under my chin and going up the sides of my face. I also get crushing pain from muscle spasms in my head and neck. I've had vertigo several times a month. Head rushes happen when the barometric pressure changes coming with so much pain that I can't even lay my head down, I have to sleep sitting up. It would be nice the find a doctor that has experience in treating someone with these 2 conditions.

@lisalucier

Hi, @numbskull – I'd like to applaud you for being proactive and looking into microvascular compression syndrome and a physician who can treat both trigeminal neuralgia and Parkinson's.

I'd like to invite @krissylamb @jenniferhunter @gregk @dolly715 @susan62 @oronogo and @hopeful33250 into this conversation to share their insights.

Have you experienced symptoms that you've read occur with microvascular compression syndrome, @numbskull?

Jump to this post

I had to send my Neurologist an email today telling her that my vertigo is back. She said that she told me so and is referring me to vestibular therapy! I emailed her back asking about MCA? But, seriously, over the years of seeing hundreds of doctors, I do not believe these doctors should be doctors? OMG, I just read your post of what your doctor said about, "I do not do research" It is exactly what I was thinking, (that her doctor will not spend time on research or wanting to know what's new and improved)? INSIDE LAUGHTER! . I also have to say, I thought the people replying to my posts were so HELP full? I wish I could help you with this answer. Hopefully I will not get Parkinson's. Elemental mercury toxicity by inhalation fortunately, (I guess) only mimics diseases. Therefore, instead of having masses of cancer throughout my abdominal wall, I have been diagnosed with another rare disease, Lemmel's syndrome? But no cancer. Lots of pre cancer. All symptoms of MSAc and POTS without the tremors. AND, alot of the signs of MCA on my MRIs, but I am going to stick with Trigeminal Neuralgia and POTS! Best, Krissy

@numbskull

@hopeful33250 Hi Teresa,

Yes, I have been to 3 neurologist this past year. The most recent being a movement disorder specialist. I Googled “Trigeminal Neuralgia and Parkinson's Disease” because I wanted to know if they are related in some way. At the top of the google list came “Parkinson’s disease: an inquiry into the etiology and treatment” https://www.ncbi.nlm.nih.gov/pubmed/22053261

I asked this question to my neurologist, Could it be helpful to investigate the link between Parkinson's Disease and Trigeminal Neuralgia?

The response was, That is an interesting observation you make but as a clinical neurologist, I do not do research. An academic institution might be a great place to pursue this (like University of Michigan).

My symptoms are Tremor and cogwheel rigidity on right side of body, Parkinson's. Trigeminal Neuralgia is a constant numb burning pain with intermittent shooting pains into mostly left side of face and eyes. I have a feeling like I am wearing a party hat with the elastic under my chin and going up the sides of my face. I also get crushing pain from muscle spasms in my head and neck. I've had vertigo several times a month. Head rushes happen when the barometric pressure changes coming with so much pain that I can't even lay my head down, I have to sleep sitting up. It would be nice the find a doctor that has experience in treating someone with these 2 conditions.

Jump to this post

@numbskull Hello Sharon

It sounds like you have been hard at work to find an answer. I certainly appreciate your proactive approach.

If you care to share more, what meds are you currently taking to control the PD symptoms? What type of exercise programs do you practice on a daily/weekly basis to decrease rigidity and increase range of motion?

Also, you mentioned in your last post about going to a research hospital to look into this, such as Univ. of Michigan. Have you made an appointment there yet?

@numbskull Hi From what you are mentioning about your facial muscles and muscles of mastication you may have an incorrectly diagnosed trigeminal neuralgia. I treated a patient with symptoms similar to yours with a specific intraoral neurmodulator device which repositioned the mandible and her symptoms resolved completely. She had had gamma knife surgery twice at a major university hospital for "atypical trigeminal neuralgia ". The intraoral neuromodulator has also helped several parkinsons disease patients with their nightmares and SBD . The trigeminal nerve has a very large distribution and innervates the muscles of mastication as well as the ascending reticular activating system. I am a physician and surgeon. The device described for use in treating the PTSD nightmares and sleep disruptions is the same as the one I used in the PD patients. I do NOT charge PD patients for this care.

@donbear

@numbskull Hi From what you are mentioning about your facial muscles and muscles of mastication you may have an incorrectly diagnosed trigeminal neuralgia. I treated a patient with symptoms similar to yours with a specific intraoral neurmodulator device which repositioned the mandible and her symptoms resolved completely. She had had gamma knife surgery twice at a major university hospital for "atypical trigeminal neuralgia ". The intraoral neuromodulator has also helped several parkinsons disease patients with their nightmares and SBD . The trigeminal nerve has a very large distribution and innervates the muscles of mastication as well as the ascending reticular activating system. I am a physician and surgeon. The device described for use in treating the PTSD nightmares and sleep disruptions is the same as the one I used in the PD patients. I do NOT charge PD patients for this care.

Jump to this post

Hi @donbear, You mention that you are a physician and surgeon. For the safety of the patients sharing here in the Mayo Clinic Connect community, would you please disclose your name, where you work and area of specialty?

@lisalucier

Hi, @numbskull – I'd like to applaud you for being proactive and looking into microvascular compression syndrome and a physician who can treat both trigeminal neuralgia and Parkinson's.

I'd like to invite @krissylamb @jenniferhunter @gregk @dolly715 @susan62 @oronogo and @hopeful33250 into this conversation to share their insights.

Have you experienced symptoms that you've read occur with microvascular compression syndrome, @numbskull?

Jump to this post

@numbskull I have experienced vertigo and tingling of the trigeminal nerve in my face with cervical disc issues and cervical stenosis. Before spine surgery, I was getting muscle spasms that would move my C1 through C4 by rotating them and tilting them. I had a collapsed C5/C6 disc and bone spurs compressing my spinal cord that had 2mm of retrolisthesis (backward slipping) and also have thoracic outlet syndrome making my neck and chest tighter on one side. All of that put uneven forces on each side of my neck and spine. I would get C1 & C2 shifted a bit, and if that was the case, all I had to do to cause vertigo was to look upward by arching my neck. My C1 often would rotate to the right, and I would get misalignment of my jaw with it being tighter on the left side. My physical therapist was able to realign my spine to as normal a curvature as possible, and was treating the spasms with a Dolphin Neuro stimulator that passes an electric current at the nerve roots to block the neurotransmitters for pain. She did this a lot prior to my surgery to help prevent increasing symptoms that would be generated if my spine shifted from muscle spasms. I am 2 years post op for a cervical fusion, and I not longer get the extreme muscles spasms and have not had any episodes of vertigo since then. I still have some issues related to TOS, but am working on that and making progress again. For me it was the alignment issues between the skull and upper cervical vertebrae that contributed to dizziness, and all of it was corrected by physical therapy to correct the alignment and get back to normal movement. Because the stenosis has been corrected with surgery, the muscle spasms have been greatly reduced, and improving with physical therapy.

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