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Trigeminal Neuralgia TN1 *new diagnosis* Help Please

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LW1988
LW1988

I'm a 30 yr old female in good health except minor issues w anemia and over production of estrogen. Symptoms slowly started over past 10 months. Extreme pain for various amounts of time, lasting anywhere from a couple hours to seveal days.

Was misdiagnosed by an OBGYN FNP who had put me on Zoloft for post partum. They blamed fatigue, tremors, and said i was grinding my teeth which was causing said pain on the Zoloft no longer being needed by me for my post partum.

I sought a 2nd opinion and PCP automatically realized i had classic symptoms of TN1. Awaiting further test results to help determine cause. Also it has always been on my right side up until my latest flare which qas on the left and significantly worse than any flare before it. Currently on gabapentin, and something for possibility of a lesion, as well as trintellix. Seems to be working alright but i still have an odd numb like sensation. And my face feels like its has the worst headache of my life in it. Plus weird temor like shakes.

Sorry to complain when everyone is dealing with so much worse. Just a little overwhelmed and hoping that if I educate myself i can make a better decision. I have a young daughter and husband that i desperately want to be somewhat normal for.

Thank you for taking the time to read this. I hope whatever you're suffering with manages to find some relief and peace very soon. G-d bless.

0 likes, 3 replies

3 Replies

  • vicki78970
    vicki78970 LW1988

    Posted

    I am sorry to hear about your pain & can empathize. When mine was at it's worst I didn't sleep for 3 days. I searched the internet looking for answers & relief. My dr. put me on Carbamazapine. It did me some relief but the side effects were awful.

    I read an article in a magazine about pain relief through Turmeric. It's a spice you can buy in a pill at any store.During the day I take 800 mg of the Turmeric in the am. It takes the pain away for 12-14 hours. Then at night I take the Carbamazapine my Dr. had prescribed. If there is side effects I sleep through them. 

    I changed my way of eating also. No sugar, no acid foods like tomato's or ketchup. No processed foods.

    Basically a gluten free diet.

    I also read if you microwave 1/4 cup of milk, cool & swish it in your mouth for 5 minutes 5 times a day for 7-10 days you will not have any more nerve pain. I tried it for 7 days. I don't have any pain but continue with my routen for fear of the pain coming back.

    Avoid stress also. This can be a trigger.

    I hope this helps & you get relief soon! I give God the glory! 

  • astrogirlbunny
    astrogirlbunny LW1988

    Posted

    Have you tried Lyrica? It's a pre-Gab type medicine and some people have a better reaction to it.

  • linda30391
    linda30391 LW1988

    Posted

    My husband has suffered from TN for about 10 years.  He was put on prescription after prescription...the only help he ever got was from prednisone ( which is a steroid) but as soon as he stopped it (as that can not be taken very long) his pain came right back.  His pain was atrocious and it interfered with his entire life as sometimes he would have four flare ups a day- other times he would have one.  Some were hours long- others 20 minutes. Sometimes that pack that you heat in the microwave would help lessen the pain!!  Out of desperation, as nothing was working, I started looking up natural substitutes for these medications.  I found DONG QUAI ( sold at a health food store) was a substitute for prednisone and CURAMIN helps to control pain and inflammation.  After some trial and tribulations with experimenting with a salve called comfrey cream ( a great muscle rub- but did not help the pain of the TN- but still not a wasted purchase so that is good), then we tried spraying on magnesium flakes ( mixed with distilled water)and letting that set on his legs, arms, and stomach one hour every morning to absorb into his system, then we tried a mixture of Organic cayenne pepper and coconut oil mix to rub on the painful area ( you can tell we were desperate) he tried these two pills three times a day....Dong Quai and Curimin (extra strength).  Well lets see, he took them three times a day and I would say within 5 to 7 days he stopped experiencing flare ups.  We proceeded cautiously as, really, who would believe this would help...so not to tell anyone he was getting relief- they would think we are crazy.  But one week went by, two weeks, three weeks...I know I started to relax a little bit.  It has probably been since February or March....no flare ups.  He has cut the pills back to two a day.  He has had blood work two times as he told his doctor what he was taking.  His blood work is coming back fine...actually great.  I hope this will help you and others.  I know one thing can help one person and not another but I know he was suffering and myself right along with him.  Our entire life was controlled by this disease.  If you or five or ten or one hundred people, or more tried this and it helped them as it has my husband, it would be wonderful.  It is a horrible debilitating disease.  No One should suffer and go through what I watched my husband experience.  Good Luck!   

     

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