Trigeminal Neuralgia & Covid-19 shots

Posted by dandl48 Dave @dandl48, Mar 5, 2021

My wife suffers from Trigeminal Neuralgia and is concerned that having it would stop her from getting the Covid shot since she has read that with the Pizer shot people with Neurological disorders are advised not to get the injection. Thoughts?

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I developed TN on the left side of my face last February and have also been vaccinated with Moderna but until I see some scientific explanation of a connection between the two I would consider it simply a coincidence. TN is an overreaction by the trigeminal nerve to a stimulus which, as I can attest, is horribly painful and frightening.
It is frequently attributable to damage to the myelin sheath covering the nerve and is sometimes idiopathic which simply means that all of the causes are not understood. I have had good success taking 200mg of gabapentin at bedtime and 100mg in the morning and 100mg at noon. I think that the theory is that gabapentin reduces nerve excitability but, unfortunately, the exact reason it frequently succeeds with TN is poorly understood. That makes me very uncomfortable but so far so good.

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We must believe in Science.. and that includes statistics.. Have you corresponded directly with Moderna..?

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I have not. I have no contacts there. I agree that, when trying to find correlations between vaccinations of all kinds, a statistical approach seems the most appropriate. Anecdotal reports are weak evidence.

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I have been suffer with TN for over 10 years. I just received my first shot of Moderna after 1 day of getting shot my TN has not stop in 4 days. I'm freaking out thinking it might stay like this. I have episodes where they lasted a long time but not like this. Hopefully it will go away. Any advice or similar situation will be greatly appreciated.

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There is evidence for trigeminal neuralgia associated with both Covid-19 and the Covid vaccines. https://doi.org/10.1177%2F11795735221102747
One underlying mechanism appears to be an autoimmune response to the spike protein on the virus or encoded by the vaccines. (Just as the virus attacks the olfactory nerve, it may attack other cranial nerves.) The mRNA in the vaccines was designed to remain at the injection site. However, multiple peer-reviewed studies have documented the spike protein appearing in lymph nodes and circulating in the bloodstream for months after vaccination (e.g., Roltgen et al. March 17, 2022 study in the prestigious journal Cell). Information about neurological vaccine injuries may be found at the Neuro V Long-Haulers Facebook group (4,000 members).
In terms of conservative treatments with a goal to suppress the autoimmune response and neuroinflammation, there is evidence that omega-3, vitamin D, and palmitoylethanolamide (PEA) supplements may help. Also, greatly limiting aerobic activity.

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First – my heart goes out to all who suffer from this condition – before I 'got' it, I'd no idea such an excrutiating condition existed. It is a physiological condition with a psychological cost as well. I wish strength and solace to all. A few weeks after receiving my first Moderna shot in 2021, I woke up with half of my face numb. Within weeks, the numbness began to be accompanied by electrical shock-like pain, and then escalated to several full-on TGN attacks that sent me to the floor. Various medical investigations confirmed there was nothing like MS or tumour or impingement on a blood vessel, rather an inflammation of inexplicable etiology. Medical professions were most supportive, but were loathe to assign its etiology to the vaccine – of course, it is hard to prove unequivocally…but I maintained all along it was. Even 2 hours after receiving the vaccine, I'd noticed a noteable facial tic. It's now been a year since those awful lightning-strike attacks, and I'm grateful to say, they have not returned; although in order to keep the pain manageable, I had to move to an inactive solitary existence, and was on a course of Carbamazepine. I've not had a further vaccine and don't intend to. What seemed to contribute to the actual waning of the inflammation for me was a 3 week course of Prednisone, a few weeks off, and then a month low-dose course of Prednisone. From there, it seemed to help my body get on top of the inflammation and the symptoms are gentling. I am just beginning to wean myself from the Carbamazapine…so far so good. But o, how I appreciate each painfree day, and yes, I am newly mindful of all who suffer from this condition – in a way, I remain in awake and aware community with you all. May the science and understanding of this condition flourish and help find a way to healing for all. best to you…

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@martinwest

Been googling links between the Moderna shots and TN. Never had TN before, about 2 weeks after the 3rd Moderna shots, I started having severe headaches on the right side of the head (I already was on Gabapentin for nerve pain in my leg which might have delayed the debilitating head pains)

Went through several doctors, ER visits and diagnostics methods, only to end up with a diagnosis of TN, likely type 1 and 2 as there always is head pain 6/10 with episodes of 9/10. On Gabapentin (300mg) and Carbamezipine (800-1,000mg) which makes the pain manageable, but pain is now moving to the left side of the head as well.

Has anybody had TN which was caused by the vaccines?

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Yes, at the end of last year I had the Pfizer booster. I began having shooting pains in my left ear. A few weeks later I had pain spreading from my lleft ear to my eye, nose, and gums. It lasted all year. I saw several doctors, some said I had TN, others said they were baffled. I was worried about having a second booster but earlier this month I went ahead with the Moderna booster. A week later I have excruciating pain on the right side of my face. It began with a sharp, shooting, unbearable pain in my jaw. Now it is a steady ache from my right temple to my gums and jaw. I have been diagnosed with TN and put on Gabapentin a few days ago. Last night I finally slept through the night after another evening of severe pain.
Has anyone read the NIH article on this? This site won't allow me to include the link but you can google: ncbi nlm nih trigeminal neuralgia after covid booster
I am thinking of asking my doctor for this steroid treatment.

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@eliz8642

Yes, at the end of last year I had the Pfizer booster. I began having shooting pains in my left ear. A few weeks later I had pain spreading from my lleft ear to my eye, nose, and gums. It lasted all year. I saw several doctors, some said I had TN, others said they were baffled. I was worried about having a second booster but earlier this month I went ahead with the Moderna booster. A week later I have excruciating pain on the right side of my face. It began with a sharp, shooting, unbearable pain in my jaw. Now it is a steady ache from my right temple to my gums and jaw. I have been diagnosed with TN and put on Gabapentin a few days ago. Last night I finally slept through the night after another evening of severe pain.
Has anyone read the NIH article on this? This site won't allow me to include the link but you can google: ncbi nlm nih trigeminal neuralgia after covid booster
I am thinking of asking my doctor for this steroid treatment.

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Welcome @eliz8642. I noticed that you wished to post a URL to a case study with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

– A case of trigeminal neuralgia developing after a COVID-19 vaccination https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8647511/

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@colleenyoung

Welcome @eliz8642. I noticed that you wished to post a URL to a case study with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

– A case of trigeminal neuralgia developing after a COVID-19 vaccination https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8647511/

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Thank you, yes, please do.

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@eliz8642

Yes, at the end of last year I had the Pfizer booster. I began having shooting pains in my left ear. A few weeks later I had pain spreading from my lleft ear to my eye, nose, and gums. It lasted all year. I saw several doctors, some said I had TN, others said they were baffled. I was worried about having a second booster but earlier this month I went ahead with the Moderna booster. A week later I have excruciating pain on the right side of my face. It began with a sharp, shooting, unbearable pain in my jaw. Now it is a steady ache from my right temple to my gums and jaw. I have been diagnosed with TN and put on Gabapentin a few days ago. Last night I finally slept through the night after another evening of severe pain.
Has anyone read the NIH article on this? This site won't allow me to include the link but you can google: ncbi nlm nih trigeminal neuralgia after covid booster
I am thinking of asking my doctor for this steroid treatment.

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Hello,
After I had the first Pfizer booster in Dec 2021, by Jan 2022 they discovered that I had Pachymeningitis. By March of 2022, they discovered that I had a severe bilateral Subdural Hematoma. I had paralysis on my right side, from my shoulder down to my foot, cognitive issues, which I still have some of. Blinding headaches etc etc. I can finally walk without a walker now. The subdural hematoma is almost gone. I’m still recovering from both. After the 2nd Pfizer booster on June 1st. 2022, I ended up in the hospital with non-stop palpitations, high fever, vomiting and diarrhea, and trembling.
Than in July I started getting water retention in my ankles, and lower legs. They did a right cardio Cath in Sept 2022 and discovered that I the pressures in my heart were high, and fluid. Now I’m on a water pill, to get the excess water out of my body. Also since I had the hematoma, Pachymeningitis, and the boosters, I rapidly gained 25 pounds. Which will now be a struggle to get off of. I am starting IVIG treatments due to the Sjogren’s Syndrome that I now have. Ugh 😩 I’m exhausted

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