trigeminal neuralgia, no relief?

[TNpain]

I was diagnosed with trigeminal neuralgia about 6 years ago and have been given many types of medications. At first the TN was only coming about once every few months but it has been rapidly increasing in frequency. I now get attacks about every 10 days and they last about 4-6 days.

I was self employed at the time with a successful computer repair business. The business quickly went under as I was unable to find any treatment that stopped the pain. The doctor I've seen has tried many types of pain pills, (please forgive my spelling on the medications names) vicodan, lyrica, tegritol, steroids neuratin. and others I can think of right now. So far nothing has reduced the pain by even 10%.

Originally the pain was on the right side of my face for the first few attacks. Now for some reason its been on the left side of my face for the last few years. I can't even wear my glasses because they are triggering attacks. I am afraid to leave my home for fear of a breeze triggering an attack. I can't shave or even brush my teeth. Now I have even more problems because my teeth are full of cavities and I think its causing the TN attacks to be more frequent. It has made my life a total shambles and I feel totally hopeless.

Since I have not been able to work I have not been able to support my family. I also can't get any medical help because I have no insurance or money to pay for help. I have tried applying for assistance through the state and also through social security disability but was turned down for both because they didn't think that TN was a bad enough disease to render me disabled. I can only assume the people that made the decision to turn me down know nothing about TN and how bad it can be.

I am at my wits end and feel like my life as I knew it was over. I have no where else to turn and keep praying I can some day get my life back. The doctor I had originally seen also suspects I might have MS or fibromyalgia because I also have been getting a lot of pain in my arms, legs and hands. I am under so much stress because bills keep piling up and I haven't had a good nights sleep in years.

I can only pray that some day this will go away and allow me to try and piece my life back together again. It would be a wonderful thing to be able to enjoy going outside again without the fear of unbearable pain. I am not suicidal, but I can say many days I prayed for death. Thank God I have my children and grand kids to keep the thought of ending it all at bay.

I am open to any suggestions, clinical trials or study groups. If you know of anyone or anything that can help me please let me know.

Jerry

[Challyss]

Hi, Jerry.  I am 30 years old, have 3 kids and a husband who is getting his master's degree - so we're broke :).  Last November I had a tooth pulled after failed root canals...and it didn't work.  My dentist sent me to a neurologist, who diagnosed me with TN.  I had no insurance at the time, and only a year later was I able to get coverage.  Thank goodness.

I'm taking 800 mg of Tegretol a day, 1800 of Neurontin a day - and half the time I end up a mewling mess on my couch.  I can handle it for a few days and then it just eats at my ability to take the pain, and eventually I crack.  At that point my husband drags me to the ER (which we sooo can't afford) where they treat me like a junky but at least give me some temporary relief - I always run home, eat, drink...SLEEP.  At that point I just try to cram as much water into my body as I can - because a lot of the time I won't eat or drink for days, for fear of making the pain worse.

I have also been turned down for state insurance (according to them, we're RICH) and Disability - but I'm going to try Disability again.  I've spoken with many people on Disability, and they all had to appeal a few times before they were enrolled.

I have young children who want me to play with them outside, and I'm afraid to.  But I am determined to figure out a way to get through it, and even if I live with it forever, I need to find the way to control my life again.  So, I'm exploring more aggressive options and trying to find the right one, probably starting with nerve blocks and moving upward on the invasive scale as needed.

Talk to your former doctor.  See if he'd be willing to write off some tests.  Many will.  If he won't or can't, ask him to call around, and try to find someone intrigued or simply compassionate enough to do so.  Try Disability again - and again.  Find your mad, and hang on to it - do NOT aim it at your loved ones, aim it at your TN.  Declare war, sir :).  Mad means motion - you can't afford these tests, but many a doctor will write them off.  Find one.  Go from there.  If you have an underlying condition triggering TN as a symptom, Disability gets easier.  

I wish you all the best, and I wish you pain-free days.  Don't lose your motivation to regain control of your life - it's yours to live as you like and we both need to find our way there.  Be well,

Erin

[pulana]

Have you had botox shot into the nerves? I just had it done ( Via Mass. Eye and Ear ) and after 4.5 months of hell with TN I am feeling much less pain. google Dr. Gary Borodic .he is amazing!!! Let me know.


Pulana

[jacks6]

Hi
I was also diagnosed with tn a few years back and no medication seemed to work.. when tn pain started on opposite side of face doc felt the diagnosis was wrong as tn only affects one side of the face they have since diagnosed me with paroxysmal heamachrania which is a cluster headache and commenced me on indomethycin which has helped greatly. hope you get some relief soon. Jacks

[TNpain]

Hi PaulMD,

Unfortunately to relief was found while I had the money and resources to do something about this. If they had been able to help me back then I would still be working and able to pay for medical treatment. Now I feel as if I fell between the cracks and have no hope of ever getting the help I so desperately need. My last hope was to be able to get on medicare/medicaid but they turned me down because they said I was not disabled. I've not been able to see a doctor for years now and have had to rely on going to emergency rooms. Unfortunately they can't help and send me away with another prescription for pain meds that do absolutely nothing to help.

I was hoping someone that read this would know of some clinical trials  or some kind of program I could get into that could possibly help me. I want to be able to work again but I can't do anything with this amount of pain. I feel like I am in a vicious circle now and there is no way out. If the doctors could have helped me when I was still working I wouldn't be in this mess.  I am not blaming the doctors, they did try, it was the medicines they tried that failed to work for me.

My doctor filled out the paperwork saying I was disabled due to my condition, but the state doctor overruled his findings and they denied me any help. How they can let me suffer like this I don't know. Its not right that they can let someone be in this much pain and turn their backs on them. I worked hard all my life until this happened and now I feel like I've been kicked to the curb like yesterdays garbage.

I know if I could get another doctor to diagnose me I could fight the denial and get medical coverage long enough to get my health back. But without money or insurance I can't find a doctor that will help. Thats why I was hoping to find a clinical trial or some kind of program doing research on TN. It's my last hope.

Jerry

[PaulMD]

Hi there.  

I'm very sorry to hear that you are in this condition.  I agree with your other doctor that this can be something else bigger than TN.  Your condition may be too complex that I cannot give you an outright diagnosis or solution.  The problem is, it will really take resources and money to have you worked up.  Your lack of sleep can also be contributing to the problem as this can heighten pain perception.  I pray that your family are sticking with you all the way through this.  You can visit the website of the National Institute of Health (NIH) for a list of ongoing clinical trials.  

Regards to you and your family.  Be strong.