trigeminal neuralgia

[BJK7493@aol.com]

Hello! It’s been awhile since i have been on. Very hectic life right now with my mom who is dying of lung cancer. I have Dermatomyosotis and have been to Mayo clinic x 2 in the last 6 months and am stable on minocylline and cell cept. My question to fellow Lupus or Dermatomyositis patients……Has anyone developed trigeminal neuralgia? I have been in the emergency room x2 since Sunday! Worst pain in my life!I just woke up with on Sunday. Feels like someone is taking an ice pick inside my ear. The ER doctor says alot of Lupus patients can develop this and it stays with you forever. They call it the suicide disease and I understand now why. Any helpful hunts would be appreciated

[Maz]

@BJK7493@aol.com wrote:

My question to fellow Lupus or Dermatomyositis patients……Has anyone developed trigeminal neuralgia?

Hi BJK,

So sorry to hear you’re in so much pain and in such a period of great stress with your Mom so unwell.

First thoughts that come to mind re: any neuro involvement is “neuro-toxins.” So researching what you can on ways to detoxify and eliminate neuro-toxins could be of great help, as well as finding a doctor who can guide you through this process.

One of the most effective things I have discovered for detoxification has been to get rounds of Glutathione IV pushes. Glutathione is manufactured in the liver and is the body’s master detoxfier, helping us to get rid of die-off, medications, and environmental toxins to which we’ve been exposed like heavy metals (e.g. mercury in fillings). When we’re chronically sick, glutathione is greatly depleted as the body struggles to regain balance. Glutathione is also found in rich quantities in the lungs, but is also depleted when chronically unwell, but replenishing this vital element is greatly preventative for lung disorders which often go with rheumatic diseases, too (e.g. lung fibrosis/ILD, etc). Anything that promotes glutathione production is a very beneficial thing to do when there is any form of immune dysfunction and neurological involvement. So much so that they are using it Parkinson’s patients to relieve symptoms. It’s purely palliative and would be a long-term measure until the immune system is back on track, but these Glutathione IV pushes are great at reducing inflammation and reducing pain….and even better…many insurances are actually covering its use! 🙂 You’ll find YouTubes on Glutathione IV pushes reversing Parkinson’s symptoms and neuropathies.

Other ways to promote glutathione include things like using undenatured whey protein (I have used Immunocal and ImmunePro), taking daily NAC (N-acetylcysteine is a precursor of glutatione), and/or coffee enemas, for instance. If you type in these key terms in the search box at the top of the General Discussion page, lots of past discussions about these can be found.

Also, neuro symptoms may also benefit from Vit B therapy…either in the form of IV Myer’s Cocktails or plain old B12 shots.

One thing that may be helpful to check into, if you haven’t already, is the possibility of Lyme disease. TMJ and facial nerve pain is a very common complaint and Lyme patients do better on combination oral therapy for a number of reasons (coinfections and pleomorphisms of Lyme) and monotherapy with oral minocycline alone may not be enough. Parisa, one RBF’s volunteers, is a good person to connect with, because her DH had Dermatomyositis and, after taking an aggressive approach to Lyme treatments for his pretty serious condition, he is now doing really well. I feel confident that she can share some terrific info and resources with regard to how to her husband was able to improve his abx protocol for more effective results.

Do hope others will chime in for you with ideas, BJK, and sending lots of good wishes your way for both you and your Mom. You’re dealing with such a lot right now and my heart goes out to you.

[A Friend]

BJK,
So sorry about your Mom’s condition, and your own. You mention your having trigeminal neuralgia. I actually gradually developed that, for a time, back about 2006. I had not been feeling very well for a while. When I was at the dentist office for routine cleaning, they did routine x-rays, and checked out a tooth that had become a bit sensitive. The lady dentist came in after she saw the x-rays and told me I needed a root canal. I told her (nicely) that I didn’t do root canals. Then she said if I left and developed an abscess, they would have no alternative, but to pull the tooth and then do an implant. I told her (nicely), I wouldn’t consider an implant.

(I’d spent some time on the Marshall Protocol Board some time before this, and had seen a post by the scientist whose work MP is based on. I remembered his writing about having a similar tooth experience and what he did; and his tooth problem resolved, and he had never had any more problems with it. So, I started doing the same thing that he wrote he did.)

Just a few days after that dental visit, I had my first appt. with Dr. K, who has been my AP physician ever since. On that first visit, she was scanning the lab copies I brought to my first appt. My previous AP physician was retiring, and he had told me he could find nothing on my labs to give a clue as to why I was feeling so bad. (Between the dental appointment and several days later, I had developed pain from the frontal sensitive tooth, that went up my jaw bone to my left ear, and the area between the two had developed “myalgia-like” pain, and I was feeling pretty terrible by my appointment. Dr. K seems to be a speed reader, and almost immediately found an abnormal lab report that she said had not been addressed (so this had gone on for several months since the report had been received). She then wrote me a prescription for Clindamycin to take every 8 hours around the clock for 30 days, and to return for another appointment.

Every day on the Clindamycin, I began to feel better and better… the Trigeminal Neuralgia, which it caused, was apparently triggered by the infection that had not been addressed for months after it had been found. When I returned to see Dr. K again after the 30 days, all seemed well, I felt like a new person. I had been off of AP for a couple of years at that time. She said from my reports I had done well on AP, and felt I needed to get back on a low dose. At that time, I got back on brand Minocin. I may have taken it twice daily on Mon-Wed-Fri, but when everything had been doing well for a period of time, I cut down to one Minocin capsule on MWF nights. That is the story of my experience with Trigeminal Neuralgia — thankfully it was short! Just wondering if you may have an infection in your jaw or teeth or facial area … or elsewhere… that may be contributing to your own Trigeminal Neuralgia symptoms? Hopefully, you can come up with a clue about that. Have you had any recent labs to detect any organisms causing elevations?

Good luck to you in finding answers and feeling physically better soon.

AF

[BJK7493@aol.com]

Thank you all for your replies. I developed a cold-sore throat runny nose, fatigue last week. Woke up on Sunday with a terrible stiff neck, and then the lightening bolt pains started in my ear and progressed until I could not stand it on Wednesday night and went to the ER. They gave me IV dilaudid which immediately took the pain away. They said I had to start on Gabopentin and i would have to build it up in my system before it was affective. I feel like I am drunk when i take that med. Haven’t been able to work since Wednesday. Have been on a z-pack for my sinus infection. I will look into those infusions and also into the doxyicylline. This is so depressing as I had had my Dermatomyositis so under control and was living a normal life and now this pops up!

[kali]

Hi BJK,
Here is a doctor who is tops in this field (face pain) and a link to information on his website. http://www.drshankland.com/pain-disorders.aspx
Check out the section on ostecavitations.
Osteocavitations can come from a tooth being pulled – but not curetted out properly thus leaving the socket infected.

Also, hopefully we are all aware of how deadly root canals can be – especially to those of us with immune issues. I have had both of mine removed. http://www.whale.to/d/root.html This is just in case you have any…

Hopefully none of these issues apply and it is part of your ‘autoimmune’ stuff and it will be short lived!

Speedy recovery,
Kali

[BG]

There are many causes of trigeminal neuralgia. My incidents of trigeminal neuralgia have been jaw infection related (1st incident)(unilateral sharp stabbing pain) and TIA related (2nd and 3rd incidents)(bilateral numbness)

Julie, based on your description, it sounds like your current trigeminal neuralgia symptoms are most likely due to an infection. Maybe a course of amoxicillin would help at this point. Something to consider.

Barb

[Author]

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