Newly diagnosed and scared.

Posted , 7 users are following.

After a couple of months of pain, my dr told me last week he believes I'm suffering with "tic doulereux".

My first bout was in November, not knowing what was going on, I took every painkiller I could get my hands on, double and triple dosing with Tylenol with codeine (which I had never used before). By the time I got to my doc, the pain was fading and he just gave me a round of prednisone to get over it. Mostly what I wanted was to be sure the pain would not come back.

Well it's back. I'm averaging about 3 attacks a day, a couple at work that are maybe a 3-5 in pain, and usually a whopper at night starting in the evening and lasting 2-3 hours. The pain is....I have no words. I just try to breathe. My eyes and nose leak, and when it's really bad I drool too. I'm gone when it happens. I count down the clock. When the pain is about to break I get shivers and goosebumps, so I know it will be over soon.....and then I'm so tired.

My Doc says he can't give me anything, because I'm 10 weeks pregnant. (Which he says may also be triggering the attacks)

I'm looking into acupuncture, and essential oils, but they seem such a slim hope. What if they refuse me because I'm pregnant? What will I do? I feel so bad for my husband, he sees me like that, dripping snot at tears and sometimes I can't help it, I make noise too.

I don't know what I'm going to do. I'm scared.

Does anyone have some suggestions or ideas for me?

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10 Replies

  • Posted

    Janna I am so sorry for what you are going through! I can understand your pain. It may be different from my own but I can sympathies when words can't describe! Have you tried to take turmeric? It's a spice you can also buy in a pill, 800 mg, all natural. (don't over use or it loses it's effectiveness. It takes pain away for 12-14 hours. 

    It didn't help me at night though.

    I was diagnosed with TN (trigeminal nerve pain) After suffering for quite a will I tried acupuncture. The 1st night the pain came back. After the 2nd treatment the pain was gone! I went to the 3rd treatment as suggested & still remain pain free! If you decide to go this route make sure it is a acupuncturist not a chiropractor that took a 60 hour weekend course. Many acupuncturist give you a free consultation. Ask if they have had success with similar cases. Most insurance companies don't cover this treatment. (3 treatments & a physical $298) They all charge different prices. It was well worth the money spent. But my pain went away & has stayed away. Every case is different. It may take up to 10 treatments but hopefully not.

    He also suggested I eat healthier. No sugar, more vegetables & lean protein. (Would also be great for the baby.

    I pray this helps & you have a stress free pregnancy! 

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  • Posted

    Dear Janna,

    I am so sorry to hear what you are going through and also being 10 months pregnant.  My heart goes out to you and prayers for your healing.  This sounds horrible.  I have different diagnoses and chronic pain for past 10 years.  Amytriptiline (spelling?) is sometimes helpful at night for sleep.  I also just take the highest dose of Gabapentin which helps for the nerve pain and Norco, ibuprofen, tylenol in large doses. I can also relate there are no words to let the people around you know what you are going through.  It's just terrible pain and ...

    I will keep you in my prayers.  I wish I had more ideas for you. 

    Sincerely,

    Patti

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  • Posted

    Thanks for the feedback and ideas.....

    I work in a pharmacy, so I am lucky to have pharmacists around to check out the remedies I want to try. Turmeric is something I hadn't thought of, I will look into that for sure. I live in a really small town, but luckily there is an acupuncture clinic here, and I am very hopeful for that.

    I'm amazed at how fast this has become part of my life...I'm scared when I brush my teeth, I try not to have anything touch my face, I avoid crunchy foods.

    I know I have to try to stay calm. I don't like to think of what the stress and pain would do to the baby, it can't be good. In just a couple more weeks I'll be past the first trimester and have more options open to me too.

    Mostly I have to stay calm when people tell me to just take Tylenol for the pain, or when someone tells me it's probably just a toothache! I know my temper is short cause I'm in pain but omg I just want to scream when someone tells me that.

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  • Posted

    Before the acupuncture I was told to use tooth paste for sensitive teeth. I bought it at the dollar tree, less expensive but the same thing. Avoid tomato's ketchup or anything with acid. Avoid sugar all together. I lived drinking luke warm water.

    When the pain was bad at night I would put some sensitive tooth paste on my finger & put it in my mouth were the pain was to get relief. 

    I know you'll get relief through the acupuncture. God's blessings on you!

     

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  • Posted

    Hi, I've had TN/SUNA since 1985 and what you describe was very close to how my pain started..  The best advice I can give you is that everyday pain killers won't work on TN. You need to go to a Neurologyst Asaph. Go back to your Dr.  Join TN association UK,  they are excellent.    Do it now, just put in   TN  uk.       There is lots of us out there to support and help you.    Another site is OUCH.

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  • Posted

    Janna,

    You need to focus and not be fearful.

    Start with a good licensed accupuncturist as soon as possible (preferably with experience in curing TN).

    1) Consumption of sugar will further damage nerves (https://health.clevelandclinic.org/2016/01/high-blood-sugar-toxic-nerves-heres-avoid/)

    2) Let go of anger/feeling of being victimised or any toxic emotions that may be contributing to the condition.

    I hope you will get well soon - it takes 6 acupuncture treatments or so for pain to disappear.

    Be strong.

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  • Posted

    Janna I was not pregnant when I first got TN  I would suggest going to a top neurologist that has much experience. Dr Sekula in Pittsburg PA should be able to help you. You can look him up on the net. I’m certain that even though you are pregnant there are things that can be done. His nurse Ann is very compassionate and if you explain your situation will get you in soon. You can’t live like that. Believe me. I know! People travel there from all over. God bless. I will pray.
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  • Posted

    Make sure to discuss all suggestions with your dr and/or health professional, we are all different.

    natural things that help. B vitamins, turmeric, magnesium, Boswell is. Yes aromatherapy is great lavender, ravesare, eucalyptus, clove, lemon grass, Melissa. Lots work well for relaxation. 

    Try to go for an easy walk outside, just light exercise.

    hot cold therapy.

    councelling, calmness, drs therapists acupuncture the whole works. This is a terrible condition throw everything you got at it.

    so sorry you have it, hope you find help!

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  • Posted

    Thanks again to every one for sharing, every idea is something to try. My options will get better after the end of the 1st trimester, so I'm looking forward to that.

    I also wanted to share that I've had some relief with using lidocaine....I got it at work (a pharmacy) behind the counter. It's a topical anesthetic. Brand name is Xylocaine. When I feel that nerve starting to act up, I'll (very very carefully) massage a bit of gel into it....by my ear and jawbone. Most of the time, the pain subsides within 20 minutes. Sometimes I feel a bit of a cold crampy feeling, and sometimes I can't get rid of the attack, but it seems to take the edge off the extreme radiating tooth pain.

    I paid about 20$ for 30grams....in Canada so I guess in the U.S. it would be cheaper.

    Just wanted to share that, in case anyone wants to try it.

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    • Posted

      Glad lido topical is working for you. Most suggestions people have commented on this site indeed works, it comes down to effectiveness, cost and side effects. Neurological cream I have been able to get in Canada, topical works great see if you can take it ask your dr/pharmacist. It has GABA, ketamine, and clonic. The mix works great for neuropathic pain with few or no side effects.
      Report / Delete Reply

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