Why would it be that the usual medications do not help me? I have classic ATN symptoms

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Hello friends,

After reading a lot on the subject of TN and ATN pain and the usual course of actions taken to help with the pain, I am even more confused than before I learned so much!

TMJ has been ruled out in my case. The burning, throbbing, aching, crushing agony which is described as Type 2 Trigeminal Neuralgia fits the description of how I spend a lot of time during the course of my day.

I have tried and Tegretol, Neurontin, and Oxycarbamazepine. I combined these with Cymbalta. I have tried seeing a Chiropractor. I have been hooked up to a TENS unit a couple of times a week.

I have suffered with this, and dogged it out now since 2003. The only and I mean the only thing which has ever brought me long term relief is Methadone, which I do not want to take, as it is a scary drug to me. I hear that the long term withdrawals are hell. Aside from that, one loses their ability to drive, which I must have, since I run a Mom's taxi service. In face, a friend of mine was working and using Methadone for chronic back pain, and got a DUI an JAIL TIME due to unsafe driving.

I never liked taking pills as a child, even aspirin. I would refuse Tylenol for a headache. One time, I was out on a date, as a teen, and the guy I was with popped a Xanax unprescribed to him. I remember exclaiming loudly, "DO YOU KNOW WHAT IT CAN DO TO YOU TO TAKE PILLS THAT ARE NOT PRESCRIBED TO YOU. YOU COULD DIE, MAN!" I was looked on as a prude.

Who would have thought that at the age of 38, my best friend besides my fiance and my personal savior would be these little green Oxycodone and little blue Diazepam. I watch the clock sometimes, when the crushing, burning vice grip on both sides of my face, and the burning of my tongue begins again. Has minutes, possibly even 15 passed? Can I take my combination of relief which allows me to talk, eat, get up, do laundry an dishes, work on my house, be a more interactive mother???? I never wanted to be dependent on anything. It's terrifying to know that the fairly intelligent and healthy human being that I once was is being possibly being slowly diminished by what seems to be this necessary evil. I have read stories regarding addiction vs. dependency. I have hoped so badly that other, non-opiate medications would work, would somehow take away the monster in my head and all over my face.

But, as I type this, I have taken what should be my final dose of Oxycodone 15 mg. and Valium 10 mg. I know that despite the fact that I will be taking Neurontin and Cymbalta in one hour, that my pain will be back before I sleep.

There is a controversy in the health care profession as to whether opiates have a place in the management of Trigeminal Neuralgia. Many state that they would be dead of suicide years ago if it weren't for opiates such as Hydrocodone, Oxycodone, Oxycontin, Morphine, Dilaudid or Methadone. Another friend of mine, whom I met online, in another forum, claims that after multiple procedures, including Rhizotomies, with the help of Lyrica and Morphine, that she is now asymptomatic.

I now have a prescription for Baclofen, which I have been unable to get filled, as I am uninsured. I do not want to throw money that my family desperately needs away on another medicine that I cannot even tell that I've taken, because it does nothing to relieve my pain.

I was once a respected businesswoman, proud of my accomplishments, and well respected among my colleagues, in general. I supported a family of four for quite awhile when my late husband lost his job in 2003. When the pain began in 2003, I was prescribed benzodiazipines. My GP believed that the stress of having a detail oriented job, a home to maintain and a bipolar husband was causing me to have TMJ. Years passed, the pain progressed, and never quite fit the mold of a classic TMJ patient. My jaw did not click when I ate. X-rays showed that the joint on my right side was a bit compressed, but nothing which would cause me pain which became bilateral and of the nature that it became around 2007-2009. It was then, in desperation, after a course of Amitryptiline, prescribed by another GP, that I was referred to a pain clinic. I now also see a Neurologist. I can tell that she does not believe I am a candidate for MVD, although I feel, if given the choice of a life filled with medication and possible complications, I would be obligated to take that risk for the sake of my girls, who have been dealt a sad hand in life . . .a bipolar Dad who was killed in an auto accident in 2006, and a Mom in chronic pain, who cannot always do the simple things in life like making it to Girl Scout meetings due to flair ups of excruciating pain, when the pills are not working, or I am between doses.

The pain pill and the nerve pill have kicked in. I feel the horridness dissolving slowly away, like clouds parting after a thunderstorm.

It is time to wake my supportive and loving fiance, whom I have been with now for a year and a half up to take him down the street to his night shift factory work. I must take my youngest daughter with us, as my eldest daughter is staying at a friends house for the night due to lack of school in celebration of MLK day tomorrow. I am thankful for the help of those two necessary little "evil" and highly addictive pills. Because of them, Mom can speak, and perform the rest of her evenings tasks which are necessary to the running of a household. Though I know the relief will not last over 2-3 hours, it is the only relief I ever find, typically, except for a grand 10-20 minutes when I first awaken from sleep.

I am wondering why the same drugs used to treat TN 1 and TN 2 have virtually little, if no, effect on my chronic pain. Aren't these the front line drugs used to diagnose and treat this illness? The book I am reading, "Striking Back", discounts the use of opiates as an effective treatment for my diagnosis.

Could it be that I suffer from another condition altogether? I am confused because what is supposed to be effective for me isn't, and what is not supposed to be effective for me is.

I am wondering if there are others out there like me. If you have not read my page, I am Type II, or Atypical, bilateral and without periods of remission.

Thanks for any input you may have on the subject.

God bless all and as always, hoping that the time will come as soon as possible, that each of you find your own personal miracle which frees you from the bonds of this most challenging of disorders.

Sincerely,

Stef

P.S. If there are type-o's here, please excuse me. I zinged this blog out in a hurry. I am on a deadline.

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As you perhaps know, I had a MVD in 2007 after 8 years of pain. Then for 2 years I was pain free. Then it returned, but now it sounds more like yours. It is not like the TN I had for 8 years. I am on Gabapentin 1200mg 3 times daily it does not keep the pain away. It is 5.30am in the morning here I have been up for about 2 hours. The pain was really bad, thought it has nearly gone now. Thank goodness I am well over retirement age now and do not work. In the days when I had to work, I was on auto pilot a lot. I am having a MRI on Saturday do not expect them to find anything. They could not see anything last time before I had my MVD, but the surgeon found a compression and removed a vein when he operated. I really thought I was cured, did not expect it to return. Is there an answer, I don’t know perhaps we are just unlucky. Margaret.

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Ladies, your stories touch me. I am humbled, knowing that I am not the only one suffering. Like many say, I wouldn't wish this on anyone.

I suppose, to be more concise, my blog can be summed up by something that bugs me. I do not know why my pain does not respond to medicines typically used to treat TN very much. It only responds to pain killers, which I hate. I just wonder if anyone else out there has this problem, sometimes. Anti-convulsants and such are supposed to help? Pain killers are not supposed to be of much use to TN patients. But, they are all that works at all for me, so I am confused. i guess, that was the crux of my rant.

Hugs to all. You will both be in my prayers tonight.

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Stef,

I’m sorry you are in so much pain. I guess I’ve been a little more fortunate but I am having more pain recently. I had an MVD in April 2009 that helped me tremendously. But the pain is back and is becoming worse. I have tried several other drugs and then added klonopin about mid-Oct. It was helping me so very much. But recently I have started developing a lot more pain. I see the neuro on the 24th so I don’t know what he may want to try. I am considering another MVD but I am trying to wait until May. I am unable to take most pain pills because they suppress my breathing. But I have had some luck with tyl 3. I can’t even take ibuprofen or aleve or almost any other pain med. But the tyl 3 does help with the break through pain despite what the literature states is supposed to work… But I have had good results with the seizure drugs in the past. And I take 3 of them but the pain is getting worse. I think it is just a trial of different drugs or the right combination. I wished you were not in pain. I keep all of us in my prayers. I have seen you in chat several times. Please join us in conversation.

Liz

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Stef Im on Carisoprodol 350 mg 4times daily,Lyricia 200mg,Oxycarbazepin 3oomg 5times a day Propranolol 60 mg2 daily does not seem to be helping my pain. seem’s to only take the edge off. I hate being on med’s . I wish I could find some thing that work’s . for my self Im scared of having more pain then I do now. hope you find some relief soon. as for your Question on why your pain does not respond to pain to treat Tn my pain does not resond to these med’s the Neurlogist say’s it’s Chronic pain . and it’s a hit and miss thing. that we must try It did help the buring or may be it was time . I think myself I would not be off the antizer med’s Ive tried to cut back only to find out the pain was worse. Do you know for sure they do not bring relief. I have bilateral face pain with no Remission. Shirley

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Shirley,

I have found some relief, but not from the medicines which are supposed to bring relief to TN and ATN patients, or others with neuropathic pain. After reading these posts, and some consideration, I am thankful for the bit of relief that I do get, by whatever means it comes. I will continue to search for a course of treatment which would allow me to steer clear of opiates. I know for sure that Neurontin must do something, because when I accidentally ran out one time, I could definitely tell a difference quickly, as I was in so much pain I had to leave a social gathering and go lie down. However, taken alone, it seems to be of little benefit. I have given everything the Neuro prescribed me a chance. None of them have seemed like much more than a placebo.

Hi, Liz! Yes, I have popped in a few times to see if I can find someone there. I am using a Mac. I don't know if that makes a difference. Whenever I go to the chat, I say "hello" sometimes, but I get no replies, nothing but a blank white screen. However, a new member was able to IM me yesterday. I did not even know that could be done. Hmm . . .and I didn't even know I was in "chat". I'm not sure how all of this works. I don't even know how this member knew I was online. Hmm?

Best of wishes to all. I hope that you are all on the road to relief, by whatever means.

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Oh, Gloria you make me laugh!!!! I was prescribed Baclofen by my Neurologist upon last visit. I only got the money to get it filled late today. I didn't want to ask my Dad for it. But, she wants me to try that since the Oxycarbamazipine (sp?) didn't seem to do much at all.

"I am addicted to pain relief - not to medication". That one is definitely worthy of being stitched on sampler!

I used to love Snickers bars!!!! (ok, sometimes I still eat them, although I know I'll pay for it later).

I think I will have to borrow your line for my February appointment! Priceless.

Thank you for all of your support, and if you ever need any, please contact me. I'm a good listener too. It sounds like our symptoms and experiences are nearly parallel.

Big hugs,

Stef

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Hi Stef,

As you know I have the same type as you and may be cross wired! I also tried everything and am happy now with the constant "mild burning" is acceptable and sporatic "other" pain are way less dibilitating (can't think of the right word or spelling) I'm take methadone, 5 mg 3x day and it works wonders for me. I can still drive and take care of my kids and do all the things I used to do except work. I too had a high rolling job which I do not have the stamina for. I do feel exhasted and the pressure in my head limits some activities like sports and most yoga positions but life is much better. Its been almost a year since my last treatment, and a year and a half since my skullbase chondrosarcoma was removed. I still have all the symptoms that saved my life because of the damage the large tumor caused and am deaf and also have tinnitus. How much methadone were you taking a day? if find even my low dose does effect the pain. I just hope it continues to work. I hope you find peace soon. My father passed away from bone cancer so he didn't know about mine and reading your post about your dad made me thankful for that. Your a stong lady! hugs

Tracy

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Stef, I know I have been 'hanging' out in your blogs here tonight, but it's Friday night, I am here alone, fighting pain, wearing a TENS unit in two places on my shoulder and back region while my husband and their friends are off watching a big night for us in Basketball (We are UK fans, living in Lexington, has it's moments :)

Anyways, I wanted to say, that except for the periods of remission, and the fact that right now (thankfully) Tegretol works for me.... I can honestly feel your pain,.....

And I sit here wondering.... why I didnt' look this site up sooner. You are one of my favorite people on here for your superb writing skills and your firm grasp on reality, as far as what we have to go through... and how others see us.

My husband (now... newly married for 1 year and 5 months) is the MOST supportive person in my life, but I have overwhelming periods of... i guess the medical world would call it depression) I call it guilt.

I feel bad that my family has to deal with everything I go through in just a days time. I have several medical problems and thankfully my TN is not a common hinderance... my new husband did see my last and most violent attack. I thought he was going to pass out from fear and pacing the floor for several hours, yelling obscenities in the "air "at the hospital that would not listen to me about my medication and what i knew I needed to treat my TN pain. That night was so aweful, I was literally kicking the wall, while laying on the couch, with my shins, just to divert the pain (unsucessfully).

This is scary. My new husband (who at the time, wasn't my husband yet at all, come to think of it, we were engaged to be married in a couple of months)... All I could think was "He is definately going to leave me after he realizes what he got himself into"

My first husband and I divorced in 2003, and my first attack wasn't until 2004, so HE (my ex) doesn't even believe I have TN, because he thinks this was stressed induced from divorce. Please! After 10 years of a psycially abusive marriage.... it was RELIEF, not stress!

Anyways, to get back on track, I wanted to tell you that I hope that one day they will stop being so hard on patients with TRUE diagnosis' (of ANY injury or disease) and allow opiates to those who suffer. They are so worried about the 2% of people that might come into their ER/Clinic/etc... whom are drug seekers, that they totally ignore patients rights to have their pain resolved/taken care of/and treated - properly.

I work in a hospital where I see people like you and I denied for pain meds, and then talk to patients that are one 2-3 different types of pain medications with a number of refills, and all the may have is a toe nail removed, or better yet. I saw an ex (now - which I had nothing to do with) employee selling HIS prescribed pain meds in the hall to another patient one day (the employee was a patient at the hospital too). Do you know he was prescribed them for his "back" pain, which he said didn't even bother him anymore. SHAME ON THEM.

Ok, back to point again. Let's pray that you get relief.... we can continue to share...and that others will be so kind to share too. Thanks again Stef for all you write to us. It is encouraging.

Dawn