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trigeminal neuralgia?


Spryte
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Yes. I have it. I have an atypical form of it. In young people it is strongly linked to MS and brain tumors. I don't have either. I have times where it is worse and I take medication and times when I just suffer a bit. I did see a nurosurgeon from Mayo a while back. Nothing was seen on MRI or I would have jumped to do the surgery. He also offered to do radiation. My husband works in Radiation Onocolgy and we feel I am too young to get radiation. Carbatrol the gold standard in drugs for this works amazing for me but it makes me a zombie. My family know not to touch my face. A good neurologist is a must. I finally got a combo of drugs that works but isn't too bad side effect wise. I have been with Drs that pain free is their goal. It didn't matter if I could function in life. I would say trigeminal neuralgia is like any other long term pain condition. It is invisible. It drains energy to deal with pain. The drugs make you stupid so it was an adjustment for my husband to learn to deal with me.

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I have it.

I went through heck to finally be seen by a Neurologist. Then changed doctors a couple of times. Tried treating it. I don't care for the side effects of the meds. Eventually I gave up with neurologists. That doesn't mean you should!! That was just my decision. Tried 4 different medications over about 8 months. With no significant reduction in pain. As long as I stay busy I can separate myself from the pain somewhat. But, when I am still I do have a harder time coping. Last year I tried chiro. and acupuncture and had good results. That might be somewhere for you to start if you have not been referred by another doctor yet.

As far as severity, I have had a period of time when I hurt so bad that my face was drawn some. Just enough that my husband and kids could tell when they looked at me. People outside of my immediate family would just think I was scowling or that I was grumpy. I have seen videos of folks who were considerably drawn. Doctors said it was a side effect of the pain. Stress only adds to flares too. Hope someone else will answer. There are days that are still tuff to get through!

 

 

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Ouch.  

 

Does the pain come daily, weekly, in spurts?  Is it constant or does it come and go?  I'm not sure if what I have is typical, though we know it's TN.  It seems to come in spurts which last several days.

 

Aside from touch, what triggers yours?

 

The pain is intense, but we've found some preventative meds that seem to be working well, after a lot of failures.  Which is what made me start to wonder about how others live with this, and what techniques I might have been missing out on.  

 

 

 

 

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I'm sorry you're dealing with this. How awful.

 

Proper PEMFT (pulsed electromagnetic frequency therapy) can help with the nerve damage caused by shingles. Maybe it could help with trigeminal neuralgia? Dr. Pawluk has used PEMFT for quite a few years to treat all kinds of health problems. (It's been used in Europe for decades, too.) Maybe you could contact his office and ask?

 

http://drpawluk.com/updates/shingles-and-pemfs/

 

For the past three weeks, I've been using a device for my lower back pain that was really bad, and in three weeks it's almost completely gone. It's really easy therapy.

 

In case you're wondering, the NIH has a lot of PEMF studies going on now, too. It's been used here in the U.S. for quite some time to heal bones that couldn't be joined by surgery and is looking very promising in helping with pain problems, too. The key points are to use the right

 

1) frequency -- the electro part

2) intensity -- the magnetic part

3) amount of time per session for a long enough time

 

I hope you find something soon that helps to alleviate your pain.

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I

Tried treating it. I don't care for the side effects of the meds. Eventually I gave up with neurologists. That doesn't mean you should!! That was just my decision. Tried 4 different medications over about 8 months. With no significant reduction in pain. As long as I stay busy I can separate myself from the pain somewhat. But, when I am still I do have a harder time coping. Last year I tried chiro. and acupuncture and had good results. That might be somewhere for you to start if you have not been referred by another doctor yet.

Stress only adds to flares too. Hope someone else will answer. There are days that are still tuff to get through!

Did you try topamax and gabapentin together? High dose of the topamax at night. I need both together. It takes about 6-8 weeks to get up to a dose that works. It wasn't bad side effect wise. The topamax did weird things with my vision at night and carbonated beverages all tasted flat.

I have heard that acupuncture helps but haven't tried it. Chiro hasn't helped me.

I also see a correlation between stress and flare ups. I also think for me there is some hormone link. I had TN for my last 2 pregnancies. It was really bad in early pregnancy but then was almost gone by 3rd trimester.

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Ouch.

 

Does the pain come daily, weekly, in spurts? Is it constant or does it come and go? I'm not sure if what I have is typical, though we know it's TN. It seems to come in spurts which last several days.

 

Aside from touch, what triggers yours?

 

 

The pain is intense, but we've found some preventative meds that seem to be working well, after a lot of failures. Which is what made me start to wonder about how others live with this, and what techniques I might have been missing out on.

Cold is a major trigger for me.

 

My pain is constant almost like a bad face headache. It then has sharp shock like pain. I have good hours, days, weeks and then I have bad. There is no real pattern to the pain.

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My pain is constant almost like a bad face headache. It then has sharp shock like pain. 

 

Yes.  That explains it well.

 

Mine seems to come several times a month, in 4 day waves.  So I have some relief, even untreated.  DH and I tend to call the episodes "migraines" because people seem to understand those better, plus I get some minor relief from migraine meds.

 

Topamax and gabapentin don't work well for me, but tegretol is doing good things with prevention.  I had given up hope, and am pleasantly surprised.  The episodes are not coming as often, nor lasting quite as long.

 

So now I'm seeing hope and wondering what else is out there, that I might have missed, that might improve things even more.

 

FWIW, my cousin has this as well, and did the surgery in which they kill the nerve.  :(  Both hers and mine seem to be related to infectious diseases we had.  Ugh.

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I was diagnosed with it at 17 When I was having several episodes a week. Each episode was like an ice pick to the temple and would leave me feeling wiped out for a few hours. Interestingly, when I described it to my dad we discovered he has it too, but never saw a doctor for it. My biggest triggers are stress, wind, and being in other pain already, which is a big reason I opted for an epidural during childbirth. I sometimes question the diagnosis and don't usually list it on forms because the episodes dwindled dramatically after my freshman year of college and I sometimes go a couple years between instances. I have not taken any medication for it other than naproxen as my episodes became infrequent. I'm sorry for those of you who suffer from it as it's really painful and debilitating!

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I don't remember not hurting. I have periods of time that are more bearable than others. For quite a while now its been bearable. My pain is like a serious sinus infection, but its all the time. The searing pain that  I sometimes have is harder to get away from. The throbbing I can set aside a little easier. Like I said if I keep busy it is less bothersome to me.

 

Triggers for me are cold weather,  really hot liquid in my mouth, and brushing my teeth.

 

My doc. that does my chiro/acupuncture introduced me to a tens unit. I do think that it helps. My unit came from Amazon for under $25.

 

I tried both topamax and gabapentin. As well as several others. Either didn't do anything or had a reaction. Doc. didn't want to do high doses of anything or combine anything. Just kept telling me to be patient. I think because I didn't come in crying they didn't take me seriously. Maybe I'm wrong. Maybe I just expected too much. In the beginning I remember laying in bed (couldn't sleep because it hurt too bad) and thinking that pain like this should cause you to have a big red blinking light over your head so that everyone know.

 

Maybe I should be asking you how you found doctors who listened and cared??!! My chiro. has been so much more helpful to me than traditional Dr. Problem is that I don't have an hour a week to give to her. And haven't for quite a while. My only help at the moment is a drink before bed to help dull the pain so I can get to sleep. No, not the greatest answer. But, I don't have the side effects of the drugs either. Just kept hoping that it would calm down as I get older.

 

AndyJoy~~I have noticed that pain from something else and the TN together will almost send me over the edge. The last time I had a sinus infection the pain from the two was so bad dh was ready to haul me to the ER. Sleep is the only way to get away from it.

 

I had wondered about the nerve surgery. I'm scared that they would hit something they shouldn't~~ I'm a chicken that way!

 

 

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The pastor at the church we used to attend had this. He had a severe case and ended up having some surgery where they put something between the nerve that blocked that pain. He had some complications from the surgery but is totally pain free now.

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  • 10 months later...

I just got diagnosed with this this morning. 

I had dental work done about 3 weeks ago and thought I just had a bad dentist. Went back to dentist to get another xray and everything is just fine. 

Finally went to Kaiser, i was screaming and tears. So so painful. 

 

I could barely drive, think, sleep---pain, stabbing, burning, electrical, 

 

I wanted to either have them pull out all of my teeth on left side or jump out of the window and just die. 

 

please anyone else..

They gave me a shot of toradol and baclofen 3 times a day. I feel the pain coming back already. 

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I'm so sorry you're in so much pain happycc! My MIL has this  - was diagnosed about 10 years ago. From watching what she's gone through, I'd recommend you find a neurologist first thing. They can help you find meds that work for you. She's currently on neurontin I believe and that seems to help a good deal with the pain. I've noticed that she does better staying ahead of the pain rather than reacting to it. In the past, she'd stop taking the neurontin when the pain went away and then it was harder to get the pain back under control. If she takes it as directed, she can stay pain free better. I know cold and stress are two big triggers for it as well. 

 

Good luck!

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I'm in the process of being diagnosed with this.  I'm terrified at times.  I had one horrible week back in March and then 6 weeks of low grade dull ache.  Then the summer off.  Two weeks ago I had the shooting pains for one day and then again, low grade ache that's still there today.  The first person who mentioned TN to me was a root canal doc and he scared me so completely that I cried for a month.  I'm 40 and I'm terrified that I will hurt for the next 40 years.  But I'm just new on this journey and need to stay calm.  My doc says there is a chance this may never come back - it does happen at random sometimes.  And many people do find relief from the drug therapies.  There are two main surgeries they perform - one where they put a sponge between the nerve and the blood vessel - very effective - and one where they use the gamma knife to injure the nerve and let it "scab over" or scar - also very effective but has to be repeated every 5 years or so.  So don't panic!  There is much hope!  My goal right now is to not let fear ruin the happy day I have today.  :)

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My mother has been suffering with this for a year or so.  She does have MS and that can be a link but they have recently ruled out that hers is related to her MS.

 

Right now she is considering acupuncture...she is worried about the surgery and she is not too big on meds.

 

HUGS to all you suffering, it is a horrible condition.

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I There are two main surgeries they perform - one where they put a sponge between the nerve and the blood vessel - very effective - and one where they use the gamma knife to injure the nerve and let it "scab over" or scar - also very effective but has to be repeated every 5 years

The neurosurgeon from Mayo was really big on Gamma knife but after talking to the radiation oncologist my husband works with I will be much older before I try. Gamma knife is a high dose of radiation to a small spot on the nerve to damage it. It's a fine choice for a 60 year old but not so good for someone in their 20's, 30's or 40's. If you end up considering it talk to a radiation oncologist before you have it done. They can give true informed consent. If you are a good candidate for the regular surgery I would do it in a heartbeat even before working with medications.

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Hi everyone:

 

thank you for your comments:

 

I am with Kaiser and my doctor has not referred me to a neurologist yet and no MRI given

I have had bell's palsy on that same side. coincidence or not/

I am numb on my lower lip to chin-same side from previous nerve injury from wisdom tooth extraction-coincidence or not.

i just had dental fillings three weeks ago there- and that is when pain started-coincidence or not.

My doc says none of it is connected, honestly I am ready to stop going to the dentist altogether. I never have problems unless i go to the dentist. Last year when I had my crown placed-same side, miserable pain for a 2 weeks. 

 

Now she is prescribing me more NSAIDS I believe. I guess to tide me over until baclofen kicks in. I am home alone with five kids and my face and stomache is killing me. The toradol has worn off. Husband has to work. 

 

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