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Atypical TN Returns

Posted , 4 users are following.

CBeth88
CBeth88

Hello all,

This is actually my mom's story, but I'm trying everything I can think of to help her. It's a 20 year saga, so I'll try to keep it as short as possible.

In 1998, my mom (age 42 at the time) woke up one morning with severe, constant burning and stabbing pain in her right eye (she describes it as if someone dropped a lit match into her eye). I was only 10 at the time, so forgive me if I don't recall some exact details. As I'm sure many of you have experienced, she saw many, many doctors before she was diagnosed with Atypical TN. She tried every possible medication (she remembers all of them, but I don't offhand) and painkiller, nerve blocks, acupuncture, and more. She went all over the country. Most doctors told her it was all in her head and that she was fine. Naturally, she fell into a terrible depression, even attempting suicide at least once that I know of. 

Then, in 2004, she found Dr. Jeffrey A. Brown, who looked at a 3 year old MRI and saw an artery pressing against the nerve. That summer, he performed neurostimulation surgery, which didn't work. In 2005, he did MVD. That didn't seem to work either. He told her that, after 6 years, the nerve was probably damaged and may or may not ever heal. TEN YEARS LATER, about 95% of the pain went away. She credits the MVD and thinks it took that long to heal.

Four weeks ago, the pain suddenly came back in full force. After years of being pain-free, this has sent her into another bout of severe depression, made worse by debilitating panic attacks. She feels utterly hopeless. We've been able to get in to see one neurosurgeon so far, but he was quite young and admitted to have limited experience with TN. He actually said that he doesn't even think it is TN, but has no idea what it could be. This sent her into such a horrible spiral that we had to take her to the ER for fear that she would either kill herself or panic herself into a stroke or heart attack. 

From what I've gathered over the past 20 years, this is a very rare, very strange form of Atypical TN. Does anybody have any similar experiences? Have you tried something else that lessened or eliminated the pain? Do you have any advice on psychological coping techniques?

I truly appreciate any advice you might have. As you can imagine, after years of having my mom back, seeing her go through this again is just destroying me.

Thank you.

1 like, 4 replies

4 Replies

  • vicki78970
    vicki78970 CBeth88

    Posted

    Your Mom is very fortunate to have a great daughter like you! I to dealt with everything you just described.

    Acupuncture is great if you can afford to keep it up. I found relief during the day with Turmeric 800 mg in the am.

    You can buy it at any drug store. It's a spice no side effects. It didn't work at night for me though. 

    Shes should avoid all sugar, even fruit. No acid foods such as tomato's or ketchup. It's also helpful if she go on a gluten free diet. (You are what you eat)

    I take carbamazaping at night. It keeps me pain free. She should also use a sedative tooth paste, some times all you can do is swish it in your mouth. 

    I even started taking a fruit & vegetable pill & drinking a green drink that has all the fruits & veggies in it.

    Stress does have something to do with this.  If you go to youtube.com they have some good some bad advice about "Relief of trigeminal nerve pain"

    I read last week if you take 1/2 C. of milk heat it in the micro for 45 seconds, let it cool to room temp then swish it in your mouth for  5 minutes 5 x a day for 7 days it said it heals nerve pain.

    I did try it. Yesterday was day 7. I do have reduced pain but it's not gone. I pray your mom gets total relief soon! This is called the suicide disease for a reason! Don't give up hope!

  • susan33651
    susan33651 CBeth88

    Posted

    Hi,

    I feel for your mum, I really do. My first experience of TN was pain in my left eye. This was about 14 years ago. Very long story short.......... I ruled out all the possible variations of migraine and headache (from Cluster to SUNA) as I didn't have any of the associated symptoms or signs. I do have migraines but the eye pain was completely different and was more stabbing in nature. Over time it worsened, was more frequent and began to affect my nose, gum, teeth and so on until eventually I was getting a variety of severe pain and electric shock pains throughout all three branches of the nerve bilaterally pretty much all the time. Nothing helped. A trip to my GP and Carbamazepine later and I have very little pain most days.

    I have a colleague who is an Ophthalmic trained nurse, she told me that many people presenting with eye pain are ultimately diagnosed with TN.

    Is your mum on Carbamazepine? Does she have any medication to relieve neuropathic pain? I have Amitriptyline which has also made a big difference.

    A Neurologist confirmed the diagnosis and has advised me to increase the Carbamazepine in the event it is necessary (so far so good). I find applying a volcanically hot hot water bottle helps.

    My only real problem now is that I sometimes have a migraine at the same time as a TN attack! Hideous agony worsened by nausea, vomiting and feeling weak as a kitten! When that happens I get more TN over the next few days once the migraine has gone. ??

    I hope she gets some relief soon.

    Best wishes

  • astrogirlbunny
    astrogirlbunny CBeth88

    Posted

    What works for TN often works for atypical. I believe I do have both TN and atypical and so does my neurologist. I highly suggest making sure she has a neurologist who is experienced in both.

    I'll give you two the advice I give others:

    I suggest exercise, like elliptical bike or something similar that is gentle but gets the blood flowing. A lot of people have been surprised to find that getting the blood flowing actually helps not only ease the pain but sometimes the pain totally goes away temporarily! It's awesome!

    Keep stress levels down. Practice deep breathing (because when you are in constant pain, you are most likely not breathing deeply enough on a regular basis). I suggest downloading one of the many free apps to help out with this.

    Drink plenty of water (stay hydrated).

    Take vitamin B-12 (most people don't get enough and it's hard to overdose on it).

    The best book on face pain (TN and atypical) was written about 10 years ago. A better book has yet to be written. It's cheaper to order it directly from the source: FPA - So here is the link to the book "Striking Back! The TN and Face Pain Handbook". http://fpa-support.org/product/striking-back-tn-face-pain-handbook/

    And the organization, FPA, is the best in the United States, and is one of the best in the world for Face Pain. You don't have to become a member to obtain some of their resources. Check out their website for more information.

    Also - If you live in a major city, the FPA may have a support group already in your city and that may be something for free you and your mother can start going to. I know they have one in our town.

    And the other support group for face pain is: http://www.livingwithfacialpain.org

    I know that one of my local hospitals has a program with regular events for people with chronic pain. It really helps to alleviate the depression when you can be with others that are chronically in pain even if they don't share the same condition.

    Good luck and keep us posted. Make sure you get support not only for her but also for yourself as a caregiver. You are important as well!

  • linda30391
    linda30391 CBeth88

    Posted

    My husband has suffered from TN for about 10 years. His MRI showed a blood vessel wrapping around his trigeminal nerve.  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!! He did also have the Gamma Knife radiation, too. That helped for about one year and the pain was back.   Out of desperation, as nothing was working, I started looking up natural substitutes for the medications.  I found DONG QUAI ( sold at a health food store) was a natural 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, then DMSO and silver, then Hemp, ( 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 since he started these pills 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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