Support and Understanding for those with TN

Posted , 9 users are following.

I would like to start off by saying I understand what you are going through and I want to be here to support anyone dealing with this terrible disorder. I had TN from 2011 until May 5th 2016. I'm sure I had it prior to 2011 but was not aware of what TN even was at the time. In May 2016 I had microvascular decompression surgery under the care of Dr. John Sampson at Duke Medical Center in Durham, NC. In Oct 2015 prior to being diagnosed I had a "Job" moment with GOD in my kitchen, I was looking for the answers of "why me" "why this" "why can't I feel normal again" and lots of other emotions, well in Oct 2017 I found my answer. I had to have it and go through it to understand what others are going through and support and help those with TN. If I can help please let me know and I will be more than happy too. I have an amazing story of just how powerful GOD is today just like HE was over 2000 years ago and my story is from this terrible disorder. If you are dealing with TN and reading this post right now, I'm truly sorry but I also want you to know "THERE IS HOPE" do not let it convince you that there's not. 

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  • Posted

    Hi Brock - I just read your post and am sitting here in my bed crying my heart out.  My pain is constant and never goes away.  Pain levels do fluctuate but most days I spend in bed.  I was diagnosed in 2006 and had MVD in 2009.  My surgery was unsuccessful.  I also finding myself asking God why.  I can no longer work and my life is so empty.  Living on pain med daily just to have a tolerable day.  What hurts so much is that family, friends do not understand and some give me the impression that I can't be in as much pain as I say I am.  I have learned now to say as little as possible.  I am 62 years old and see no future for myself.  So sorry, but the last couple of days have been very painful.  Thank you for taking your time to read my comment.  Just to have someone listen and understand, helps me tremendously.  God bless you and wish you many pain-free days to come.

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    • Posted

      HI, Marlene. I read your comment and feel for you. I've been going through T.N for over 20 years. The best advice I can offer would be to try Magnesium Glycinate 400mg 3 times a day. The other option would be Prolotherapy (dextrose injections) sugar injections to the face. This would be done by a naturalpathic Dr. 

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    • Posted

      Marlene, I’m so sorry to hear that the surgery did not work and that you are still in pain. If you don’t mind me asking what was the Drs. reason on the surgery not working? It bothers me to hear you say that don’t see a future, I truly believe you do and the best is yet to come. I understand the comment about folks not understanding the pain levels. TN is not visual meaning that when folks see you everything seems to be okay from the outside but on the inside it’s a horrible feeling that you try to cope with on an hourly bases just waiting on when the pain strikes again. I would suggest a second opinion. Do not shut down there are way to many folks that understand what you are dealing with and folks that don’t mind supporting you, in other words “Do not suffer in silence” please let me know if there’s anything I can do for you. Remember this and I’m sure folks will read this and thank of course he can say this now that he’s pain free but regardless if my surgery worked or not GOD dont make mistakes. 
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    • Posted

      Hi Brock - thank you for your reply.  My neurosurgeon did not give me a reason why the surgery failed.  I had to travel 1200 miles out of province (I am a Canadian) to a major hospital specializing in this disease.  No dr, pain specialist or other specialists I have seen could give me an answer.  I also made an appointment with a neurosurgeon in the city I live in and she could not answer my questions.  So I just gave up.  Pain meds do help some days with a tolerable day but it never lasts.  I am scheduled for another MRI next month with contrast.  I believe in God as I am a Christian but still continue to ask why.  If I repeated myself here, I do apologize.  My memory fails me at times.  Thank you for your understanding and compassion.  I truly appreciate you.  Marlene
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    • Posted

      Marlene, please don't give up! I've been reading these post for months & felt the same way. 

      A few people suggested acupuncture. I am on disability I know my insurance wouldn't pay for it.

      I checked on the internet for acupuncturist (Not a chiropractor that does acupuncture)

      It  wasn't even a total of $300 for exam & 3 treatments. I was pain free after 2.

      The 1st night I had pain about the time I ussually took my carbamazapine. I took it & the next day I went to my 2nd appointment. 

      The pain is gone! Last night I took 1/2 the amount of carbamazapine (weening off)

      I am praising God for victory & want to thank the people that sugges 

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    • Posted

      Hi Marlene and All,

      I can totally relate to you, Marlene.  I have been suffering with TN, Eagle syndrome and GPN.  The MVD did not really help that much.  I am a Christian also and many days I can hardly make it.  I just take tons of pain meds, muscle relaxers, eat mostly yogurt or ice cream because my mouth is on fire all day. My prayers go out to you for strength and peace in knowing God is at your side and carrying you through these dark days.

      I have another question regarding the concave portion of my skull from the MVD surgery.  I know many of you said this is normal but the hole is getting larger and larger since my surgery last July and the muscles feel like they are pulling it apart.  I am starting to get muscle spasms in my neck/jaw and face along with very bad headaches and vision/eye pain.  Does anyone out there have this stuff going on?  Please respond as I do not have a good relationship with my neurosurgeon and his PA won't answer my email messages asking about this.  Thank you and God bless you all. Patti

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    • Posted

      I had acupuncture 3 times this week. The 1st night I had to take Carbamazapine because I still had pain. The Next day I had my 2nd treatment. It totally disappeared. I went to the 3rd appointment & because that's how his appointments run.

      He inserted the needles in different places because of the nerves. Total cost $298. Most insurance companies reimburse.

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    • Posted

      Hi Vicki,

      Thank you for your input.  I don't know where to start to find an acupuncturist.  Does that help the pain and spasm feeling in the neck and face?  That would be great if it helped.  I am also at my wit's end. Thank you.

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    • Posted

      The pain I had was so excruciating I wasn't able to eat, drink or lay down to sleep.

      I would search the internet on you tube & this web site. Some one suggested acupuncture on this web site. I did some research, typed in acupuncturist & my zip code. There wasn't a lot of them. 

      The one I went to has been in business for over 13 years. He is not a chiropractor that took a 50 hour course. Don't go to a chiropractor go to an experienced acupuncturist. Ask if he has experience with TN & how successful it has been. 

      I am a Christian & was concerned about what I've heard about acupuncturist. The man I go to is a christian also.

      As long as you stay still with the needles in it's close to being pain free.

      I had surgery set for February 6th & canceled now that there isn't any pain!

      He explained that the nerve is an angry nerve. The needles & the tinse unit retrain the nerve. 

      I still don't want to lay on my right side though. I never want to feel that pain again!

      As I said the guy I saw charged $74 for the exam & $74 for each treatment. The total was just under $300. I paid & am checking on my insurance reimbursing me. If It would have cost a million dollars & had to spend it on this treatment I'd do it again!

      I'll be praying for you to be able to find a good, experience one to go to & you can get the results I got.

      Please let me know how you made out!.

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    • Posted

      Blessings, you put me into tears reading your story. 4 years into treatment with dismal relief at best I got Trigeminal neuralgia from shingles so I have another horribly painful condition called postherpetic neuralgia. I understand that hopeless feeling that god has left me in the cold, and my family or friends tell me I need to “think it away”. Very frustrating to have very few people that understand.

      I got it at 28 years old as a working carpenter, now I lay in bed and have the physical ability of a 70 yr old man. Knowing it took a young healthy man right into the hospital bed, and for 3 years. I can only imagine how much harder it is at your age.

      topical ketamine with GABA really helps for extreme attacks. Then cannabis, capsicum and mannitol topical for daily help with the minor pain,

      Supplements that are strong anti oxidants work as well, curucummin, pycnogenol and cayenne have worked wonders for me,

      ice packs, light exercises, proper diet and small dogs have helped as much as medical interventions which is sad.

      I got great results from trying the ketogenic diet, low carbs, no sugar, high in proteins and fat which help rebuild the neurological system.

      When I say “great results” I mean it took my pain from excruciating hell to I can lay in bed comfortably.

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    • Posted

      hiPatricia - thank you for your post and kindness.  May I ask what is Eagle syndrome and GPM.  These are new to me.  I am in my 12 year with TN and had MVD surgery in Nov 2009.  I have not experienced what you are enduring.  You need to make an emergency appointment with your neurosurgeon or go to the ER.  Something serious is going on here and I would look into this asap.  It does not sound normal.  Many blessings and I would appreciate knowing what your results are.
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    • Posted

      Thank you so much for the info.  I never really trusted chiropractors and I wouldn't want to go to one even for acupuncture.  I will do some searching.  I'm also glad to hear there is such a thing as a Christian acupuncturist.  Thank you, thank you for some hope! 

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    • Posted

      Hi Marlene,

      Thank you for responding to me.  I reached out to my surgeon once again via his PA (hopefully I will get a response).  Eagle syndrome is kind of like an extra-long bone or calcified ligament in the hyostyloid (spelling?) area in your neck.  It was pressing on my ear nerve and throat nerve.  It really hurts and is hard to eat because you feel like you will choke.  It was only diagnosed with a 3D CT of the skull I believe.  They removed the bone in April of last year and that helped a little.  GPN is pain from the glossopharyngeal nerve and they tell me that has to do with my tongue and throat pain also.  The MVD surgery helped a little but my tongue and mouth still feel like they're on fire besides the facial pain on that side.  I am going to try to find an acupuncturist as Vicki has suggested in this discussion.  I really feel for you in seeing how long you have suffered.  It's a very difficult situation in which to live.  My prayers extend to you.  Many blessings also!

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    • Posted

      Hi Patricia - I appreciate so much your response.  Now I am a bit wiser about your health issues.  Life certainly has its challenges but I always say it could be worse,  Do you have a good support system?  I have a beautiful and caring husband - without him I fear where I would be.  Also. I am very interested in your upcoming acupuncture treatment.  Would you let me know.  Many God's blessings upon you.

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    • Posted

      Geoffrey I am so sorry for your pain! I have been in TN for a while & tried numerous med's & all natural remedies also. I was scheduled to have surgery today but read on this web site about success with acupuncture.  After just 2 treatments the pain was totally gone! I went for a total of 3 treatments & it cost less then $300. If it would have cost a million I would have come up with the money some home!

      Do not go to a chiropractor the does acupuncture. They get their license to practice in a 50 hour weekend course! Most give free consultations. Ask them the success ratio with your condition.

      Blessings to you. I pray  this works for you.

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    • Posted

      Hi geoffrey - thank you for your lovely message.  Many conditions and meds you spoke about have me at a loss.  You are so young to endure the pain that you must confront on a daily basis.  My heart hurts for you.  As I communicate with you, please forgive me if I repeat myself.  Because of brain surgery, I do have memory loss and I forget at times what I may have mentioned to you before.  I am seriously thinking about dietary changes.  My diet is terrible as chewing is my worst trigger for pain.  I have days that I refuse to eat in order to have a low pain day.  Family members and friends do not understand this chronic pain and it hurts me terribly.  I have to take pain meds daily in order to get through my day and I have a sister that is so rude and uninformed, she calls me a drug addict.  Because of great amounts of stress, I keep away from her and that includes no speaking.  I have had to block her my facebook page and also block her from my telephone.  I do take a med 3 times a day for anxiety and it does help me greatly.  Where do you live.  I live in Canada.  Are you able to leave your home for periods of time?  Are you married?  I am and have a beautiful husband.  He cares greatly for me.  I love him dearly.  I Love dogs?  What breed do you have.  They can be your best friend and show tremendous amounts of love.  Be sure to let me know how you are feeling.  I enjoy our conversations.razz

       

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    • Posted

      Ya I live in bc near Nelson, where do you live in Canada?. Being in a small town it is harder to access support or medical however I do live near Kelowna and Vancouver so I am willing to travel for the experts I have just been waiting for medical supports to come in slowly. 

      One of of the best things that has happened in my life’s since getting shingles is a loving and supporting girlfriend. I have a hard time getting to a grocery store, cooking, etc., she had been a huge help physically and emotionally. It’s hard to find people that can understand illness.....and getting support. Especially being young people don’t expect my nerve damage to debilitate me.

      Cute small animals I have 3-4 in my building complex I play with min-pin chewawa cross, named Lucy, 80 pound pity and my neighbor has a cute small black cat I visit daily, carney. I have lived with several animals and it helps however my health is so terrible I prefer to not have one...... Maltese besauchane cross, little white cute dog named chennelle, that is my gfs dog was my favorite next to my pink nosed cow looking cat named Penelope.

      I have always lived around animals, being a vet kid, but since being sick I really enoy it. Do you have pets? What type?

      thanks for your kind caring replies it is nice to connect with people that suffer this disease and clearly understand.

      I have postherpic neuraligia in my trigeminal nerve, it effects my jaw neck and left arm. The medical suggestions I spoke about you would have to discuss with your dr. Cannabis and ketamine creams are fantastic but need prescriptions and are rather costly.all other things I mentioned are cheap and available over the counter at health food stores or pharmacies. A lot of things I mentioned above that work have been tested well and I have used for a while I find them safe effective for some of my worst attacks. Nothing takes my pain away, but getting off the couch with an ice pack is a huge improvement.

      i have been fortunate to work with some excellent drs and pharmacists that have recommended a variety of things I have found to work. Magnesium, anti oxidants, and capsicum cream have been my favorite. Drs and Pharma have also recommended a small novel of things that didn’t help so rather then talk about the horrible soilutions my dr has suggested I live with I like to focus on the few, strange weird things that do work.....such as animal therapy.

       

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    • Posted

      Hi Marlene,

      Like Vicky who shared her experience with you earlier, I am now pain free because of accupuncture. I hope you will find a good licensed practicioner soon.

      God bless,

      Mark

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    • Posted

      Hi Vicki,

      I'm glad acupuncture worked for you!  I'm trying it myself.  So far after two treatments, there has been no response.  The first treatment was the "four gates" and the second one was on the back.  I'm going to try at least one more treatment.

      Where did the acupuncturist stick needles in your treatments?

      Thanks.

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