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Trigeminal Neuralgia

acallen98
Posts: 4
Joined: Mar 2009

Has anyone heard of Trigeminal Neuralgia? My mom has Endometrial Papilarry Serous Cancer. She started as a stage 3b and they rediagnosed her to stage 1c. She had complete hysterectomy, 4 rounds of chemo. She had a catscan and was said to be cancer free. Yeah! She is now continuing with three month checkups.

Well, my mom has been having awful piercing pain in her jaw. Whenever she talks and eats it is so painful. First she went to the dentist and they replaced fillings. It does not appear to be anything dental. She read it could be a side effect of chemo. She has since gone to her doctor who prescribed Lyrica. It is still bothering her with little relief. She is not sure if she just needs to be on the medicine longer. She has been on it for a week and they even increased the doseage. It seems so painful for her and I hate that she is finally done with chemo and now has new battles to face.

Is this a common side effect?
Amy

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

It can be nerve damage from chemo. But with history of cancer I would consider a scan of my head also. Has she seen a neurologist? Second opinion does not hurt after having had cancer. I wonder if she needs an additional pain medication until they find out if the lyrica will work for her. She should not have to suffer so. sometimes even a week of steroids helps. Sometimes you have to be an advocate for yourself as a patient. We all walk a fine line of wanting to be advocate for ourselves and not an overly demanding patient. she is in pain and I think needs more help and this is not being demanding. Let us know how she does.

Diane

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I just started getting some mild pain in my right jaw - so I find this post very curious. I will notify my gyn-onc if it continues for another week.

Mary Ann

adan57
Posts: 4
Joined: Sep 2009

Hi,

I am not a cancer survivor, my sister and my best friend are.
However I have TN. It appeared to come out of nowhere but we later figured
out it was stress related. The pain meds dont work, they just make you drugged.

I dont know what you know about it but they call it the suicide disease and it is said to be the greatest pain known to man. I had 10 months of nothing to do but cry and research.

I learned so much, but I would rather not have had to find out.
It was the worst thing that ever happened to me. Then one morning I woke up and thought
my tooth had fallen out of my mouth. It felt like something was missing, and something was missing it was the pain.
I went on Gabapentin and I take it every day as prevention because when you are in the middle of a TN episode, NOTHING helps. I have the kind that wasnt just a shooting pain, it was a constent burning, throbbing, pain like a hot spike was being driven through my face, all the time, never stopped with episodes of the electrical shock waves. I can truly see why they call it the Suicide disease because if it comes back, and it very well could, I cant say I will stick around for that.

Tell your mom to ask for Gabapentin, it might help her, but when it goes away tell her to get on the Gabapentin for prevention. This has nothing to do with the chemo or anything like that , it is probably the stress, it can cause a compression of the trigeminal nerve.

I hope she feels better I wouldnt wish that on my very worst enemy if I had one.
If you have any questions regarding symptoms or anything like that please email me I will be more than happy to help in any way I can.
good luck

acallen98
Posts: 4
Joined: Mar 2009

Thanks for your responses. Yes, my mom has heard that this can be stress related as well. She is going to see a neurologist, but probably not for another month.

She started out with Lyrica and it gave her tremors and she was disoriented. They switched her to Tegretol (Carbamazepine). She got a rash from this, so they figured it was an allergic reaction. These both gave her some relief, but otherwise, still a very painful experience. She is now on Neurontin (Gabapentin) and Baclofen. She started yesterday, so not sure how long it takes for relief. I am glad to hear that this has been a good drug for you. I hope it helps her as well!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My pain is better now that I've resumed wearing my dental guard at night. I am a "teeth grinder" which reeking havoc with the nerves in the teeth and jaw. Check this out with your dentist - hopefully this might give you relief. The guards are expensive but worth it. The ones in the drug store are as effective.

flyerette65
Posts: 42
Joined: Oct 2014

Although all of these posts are old, I found them very interesting.  I was diagnosed with USPC, Stage 3A back in 2011. I had a radical hysterectomy, did chemo but due to research regarding internal radiation, declined radiation treatment.  In December of this year, I had an intense bleeding episode from what I thought was my vagina and I found it to be rather alarming.  It reminded me of when I had a miscarriage, years ago. Lots of clots, bright red blood so I called my oncologist because at my age (67) bleeding of any sort from that region can be a very bad sign. The oncologist said the bleeding was not coming from my vagina but rather from my bladder or kidneys.  I gave them a urine specimen (and it looked more like a blood specimen) and the next day they called and said I did not have a bladder infection and that the lab had commented on the quality and almost no urine.  I went to a urologist the same day who recommended a CT scan and a cystoscopy under anesthesia, which I did the following week. Bladder lining thickening of the back wall of the bladder and two "raw" spots in the bladder were the only findings.  He biopsied the raw areas and they were benign. About two weeks later I started having what I thought was either a tooth ache or a sinus infection.  I self medicated with nasal spray, Claritin, 3200mgs of Advil and sometimes had to take 700mgs of vicodin the pain was so bad. I also used ice to try to relieve the pain and it did help somewhat It was also all around my right eye and affected my eyesight and went into my cheek and one side of my nose as well.  It seemed the pain was set off by eating, talking, drinking, and exposure to wind.  I went to the Urgent Care facility (b/c my GP couldn't see me for a week and I said I can't wait that long) and they gave me Augmentin b/c we thought I had a sinus infection.  The pain around my eye never quite went away.  It reminds me of when I used to have migraines, one sided pain and nausea.  I felt almost normal yesterday until I went to speak with my attorney about getting a divorce from my second husband of less than two years, my mom's will, my will, etc andas I started talking I got the most intense facial pain again.  It was so bad I could barely talk, much less think. Today I woke up feeling pretty good. I went to the grocery store, ran into an old friend we had a great conversation and I came home. I was out in the cold and wind for about 5 minutes and the pain started up again.  I got ye old ice pack out and laid on it, tried to eat some lunch (soup and a sandwich), took a vicodin and got on line and started researching facial pain.  Of course, the first thought is did the general anesthesia from the cystoscopy set something off? Second thought of course is metastisis from the USPC. I really believe I have trigeminal neuralgia.  Interestingly enough, I have been under a tremendous amount of stress. Asked my husband of less than 2 years to move out back in October, had some up and down health issues, have been suffering from sciatica that's so bad I have to lay down and now my docs think it was not only sciatica but kidney stone pain also and that I passed a stone which is what caused all the bleeding (and my "sciatica" has drastically improved), had to replace the hot water heater and have $550 worth of work done on the furnace, all in a two week time frame, am taking care of my 94 year old terminally ill mother with whom I get no help and who is extra special demanding whenever I feel bad.  The day of my surgery she wanted me to go to the bank for her because she only had $80 to use to go out to lunch with on Saturday. Myself, I could have a heck of a grand lunch at the most expensive restaurant in town on $80! She's senile, incontinent and very demanding. I'm too old to be dealing with my health issues and her demands. Also, I'm going to physical therapy 3 times a week.  The physical therapist I started seeing for sciatica told me I have "pelvic floor problems"  in addition and sent me to a physical therapist who specializes in pelvic floor disorders.   They both say my leg and hip muscles are in a constant "contracted" state and aren't I in pain? No I'm really not I guess I thought it was normal to feel the way my legs and hips do. Sometimes I feel I can't bear the constant pressure of taking care of everything, all the bills, all the repairs, a 4 bedroom 2100 sq ft ranch, yardwork  for a 2 acre wooded lot when the weather is warm, her health, my health, ex husband's refusal to speak with me about a "final solution" for our marriage  and now this stupid facial pain.  I did not read anywhere in the literature I looked at that suggested that this was stress related, it's due to several scenarios, deterioration of the protective sheath surrounding the trigeminal nerve, an enlarged blood vessel compressing or throbbing against the microvasculature of the trigeminal nerve which causes erratic and hyperactive functioning of the nerve.  Also can be caused by an anuerysm, multiple sclerosis or a cerebellopontine angle tumor, a posterior fossa tumor, any other expanding lesion or even brainstem diseases from strokes.  It says nothing about being caused by stress, although, certainly having this horrible pain cause cause stress and depression. The onl yway to find out for sure if you have Trigeminal Neuralgia is to have a "special" MRI called an MRI Fiesta Scan.  The longer you avoid getting this condition treated, the tougher it is to treat as it is a progressive disorder.  Bottom line is, if you think you have trigeminal neuralgia best get yourself to your GP and ask for a referral to a neurologist. That's the direction in which I am headed.  I don't want to think I'm going to have to deal with this pain for the rest of my life and I can see why it is called the Suicide Disease.

Ro10's picture
Ro10
Posts: 1578
Joined: Jan 2009

WOW what a super stressful time for you.  So many major stressors for you.  I do not know how you can cope with so many things piling up on you.  Wish I had some answers for you.  I will pray that you find some peace and comfort as you go through all of this. In peace and caring.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 777
Joined: Mar 2013

Flyerette, please, take a breath.  You have a lot going on and I can't help but wonder if there is someone who you can talk to?  A neutral ear to listen and suggest some help?  When I googled (doctors love when we do this :)) Trigeminal Neuralgia the Mayo clinic said there are things that can be done to help with the pain.

 

Abbycat2's picture
Abbycat2
Posts: 286
Joined: Feb 2014

Oh , my, flyerette, what a life you are living! I am an outgoing, friendly woman who has rarely met a "stranger" , but, flyerette, life took a horrendous turn for me the day I was told that I had stage 3A UPSC, like you. I didn't think I would see my 62nd birthday almost 13 months later. Well. I saw my 62nd birthday at the end of November and I am still kicking. I don't assume that I will live a long life like my dear parents did, and that realization has been for me a life changer.  I no longer allow ANYONE, including my insensitive older sister or staff at work to hassle me. Thank goodness my partner of 30 years is a source of great comfort and peace in my life. At this pivotal juncture in my life I realize that I must be the one to take care of myself. My new Mantra is peace, quiet and tranquility. I can only control my own actions and not those of others. I don't know the specifics of your life situation, but I do know that life is short and we must all attend to what really matters. There is no room for drama in my life because I will not allow it in. Seek out peace and sanity in your every day life, and I hope a neurologist can successfully treat your trigeminal neuralgia.

Warm Wishes,

Cathy

 

 

flyerette65
Posts: 42
Joined: Oct 2014

I am like you Abbeycat 2.  I do not allow anyone to use me as a doormat. That's why I asked my husband of less than 2 years to move out.  He wanted a nurse and a purse or a "mommywife" and I told him I had enough to deal with without him behaving like a spoiled rotten man-child.  I do get out for lunch with friends and I do Zumba twice a week and Pilates once a week.  I have friends that I go out with in the evenings and also my daughters and I are close and they help as much as they are able.  My son is coming over tomorrow to help me with chores that need more muscle than I have!  I sometimes wonder why God has to pile one thing upon another upon another.  He has tested me in many ways over the past few years and I always try to make the best of the situation whether I am doing chemo, taking care of my mom, taking care of my daughter after removal of a benign brain tumor for which she had surgery in 2008, losing my first husband to a massive heart attack in 1998 and just dealing with all the other garbage life throws at us, but I am starting to wear out from everything.  My mom's nurse told me that I'm a strong woman and I need to pull myself together.  I told her I am tired of being strong and I would like for someone (besides God "sometimes") to take care of me once in awhile.  I have plans to start getting a monthly massage, I get my hair done once a month and I try to do something I enjoy everyday whether it's listening to music, talking with friends, reading, etc.  Life is 10% what happens to us and 90% how we react to it but sometimes I'm ready to scream!! Sometimes I feel like I am literally at the end of my rope! I do need a "neutral" ear to listen to me.  I feel like my soon to be ex husband used me for his own financial gain.  He sold his house and didn't make much of a profit on it, then I found out that he was deeply in debt after we were married. He is retired military and he ran up a huge bill on the Star Account at the military base and they have confiscated our tax refunds (though they have been small) for the past two years.  Then they started garnisheeing his social security taking 15% of it monthly, which is still going on.  I found a collection letter from a bank for over $13,000.00.  He withheld all of this information from me.  He blames the demise of our marriage on me, according to him it's all my fault but he wasn't supportive of me and all the crises that have befallen my family and me in the past 15 months. He also told me when he was telling me he loved me there at "the end" that he didn't really mean it. He's a cruel man.  Yet, he told a mutual friend on Christmas Eve that he still loved me. I don't understand what kind of game he's playing. Perhaps I was too naieve bcause my first husband was such a good husband and father and was honest and caring, I assumed that when John told me he loved me that he was being sincere.  I suggested marriage counseling, he won't go but yet he claims to be a "good christian man". I pray for strength and patience everyday, that's probably the only reason I haven't literally blown a gasket! Sorry for venting ladies but thanks for the kind words! It makes me realize I'm not over reacting and that almost everyone is expecting far too much from me, I'm one person and I can only do what I'm capable of, not what others think I should be doing. Perhaps when I'm taken to the looney bin in a straight jacket then everyone will realize I'm not really superwoman!

Thanks again,

Barb

pinky104
Posts: 165
Joined: Feb 2013

Back in the 90's, I had bad facial pain, which my doctor thought might be trigeminal neuralgia.  A number of things bothered it--hot, cold, eating, and maybe the wind, too (it was so long ago, I can't remember for sure). I had my dentist check it out, and he didn't think it was a dental problem.  My family doctor referred me to a neurologist, who did some poking and prodding all over my body.  In the end, he decided it was dental.  I went back to my dentist, who had previously x-rayed the thing and found nothing.  When he went into it with a drill, he found that the tooth had split in perpendicular directions, which never showed up on the x-ray.  Whenever I bit down on food, I was splitting the tooth apart further, getting a horrible shocking sensation.  I ended up having three pins put into the tooth to hold it together, which was one of the worst dental procedures I've ever had.  I've had root canals several times and crowns several times, which weren't problematic at all.  It was such a relief when I got that fixed.  I had been under a lot of stress at work, and I had often ground my teeth in my sleep.  I got a bite plate to protect my teeth, but I had a lot of old fillings that needed replacing with crowns and the bite plate no longer worked with all the changes in the shape of my teeth.  

I eventually had to deal with a bunch of medical problems with my mother (broken hip, subdural hematoma, etc.) and put her into a nursing home as I had to work and couldn't stay home with her.  It sounds like you're getting to that point with the senility in your mother.  There's just so much you can take, and you sound like you're at your breaking point.  I've been through some of the same things as you, just not all at the same time, and I know how stressful all these things can get individually, let alone all together.  Are there any other family members who can help out? I had two siblings, but didn't get any help from either of them.  

I'll be praying for you, as I'm sure others on here will, too. 

 

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