Just had my first attack of trigeminal neuralgia

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Never felt pain like it ended up in hospital, put on medicine but google it and there’s no good news! Going to see doctors tomorrow feel upset and can’t believe it ! 

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  • Posted

    I know how you feel i literally wanted to die the pain is unimaginable and you Absolutely dread the next shock but there is light at the end of the tunnel. I am now pain free!! Thank God!! I had TN FOR 3 YEARS AND WAS ON 2700 ML OF NEURONTIN! Then the meds stopped working and I opted for MVD surgery at penn Med Dr. LEE he was a gift from God and he was the protege of the man who created MVD surgery. I was literally up and walking around in 2 days like nothing happened pain gone instantly But recovery time is about 2 months of Chilling just to let your brain regroup. I watched some of my surgery on video it was an Artery Punishing the nerve and a Huge Vein as well he removed them and placed cotton between it and bam I have my life back!! Ask your dr. For carbamazepine it's the best for tn I was allergic so they put me on Neurontin. Up the dosage until pain stops 2700mg did it for me.

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    • Posted

      The doctors put me on carbamazepine and it’s second week so they are upping the dose, had last week off work was just a mess and back to work but struggling it’s just so difficult to function but it’s early days. 

      Doctors said today could on meds for 6 months then they will try and lower them and see what happens. 

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  • Posted

    It probably is the worst pain that you will ever experience. I have been dealing with this condition for 7 yrs. now. The key is to find a good pain management Dr. to help you manage your pain. Also paying attention to your body. We all have differed triggers to pain. For me it is cold, lemon, mint etc. so avoiding these help me live without the painful episodes. I have also had MVD surgery making my pain manageable. Good Luck don’t lose hope. 
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  • Posted

    I have had trigeminal neuralgia since the spring.  

    This afternoon, I am out and around without any ice pack, which I have carried everywhere.  

    Being in a public library, I have a notebook open with a variety of notes.  They include, "NEURO" and  the level of discomfort today, I wrote in "LEVEL 1" which is the least on a scale of 1 through 10.  

    So far, I've done well, all except when I woke up today.  

    Cold ice packs and freezing ice water help me and maybe they will help you too.  

     looked up herbal remedies and diets to help neuralgia.   I think this helped and maybe it would help you too.  

    I improved a lot over the months and now my teeth and gums are not numb anymore.  

    I hope more patients provide you with more good news like this and I hope find that you can get over the discomfort like I have.  

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  • Posted

    I've had trigeminal neuralgia for over 20 years and I can tell you the things that worked for me were, acupuncture with electric stimulator attached to it. Magnesium glycinate 400mg 3× a day really helped me, and if you have a naturopathic Dr, who can inject the painful areas with dextrose (sugar) it will help a lot. It worked for me. My brother-in-law told me years ago, an older lady tried it, and it help a bunch. It took me to a pain level of 3 out of a 10. Try using your insurance to see what they cover.

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    • Posted

      Does anyone know why you get it!! 

      I am fit healthy don’t smoke and only drink a couple at weekend,  work hard running my business and look after kids ???? Why !!!!! 

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  • Posted

    Sorry about your pain hopefully Dr. can help. 

    I can not take that drug I am allergic. I take Gabapentin when I need it. Your body gets use to most pain meds., so they stop working. 

    When TM goes into remission, I slowly get off the meds. so they work when I need them.

    Keeping a log with any changes, helps to make the best of Dr. visits. The pain meds. use to cloud my mind. ☹️

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  • Posted

    I don’t like the way meds. make me feel so I have tried other things that have worked. I have tried acupuncture, it worked for about 1year. Currently I am taking CBS sublingual, it helps a lot. I have taken Gabapentin maybe about 3 X in one month. There is also a CBD cream I apply to the area. 
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