We are patients living with Trigeminal Neuralgia, here for your support.

TN and mental health questions for the group

So I was retired from the Navy in late 2007 after a gamma knife surgery that didn't go well lets say. At the time I would've thought health care outside of the service would be better but I figured wrong. A disturbing trend has happened which is literally killing me to this day. Back in 2008 or early 2009 I was hospitalized after a bad attack. I was blacked out so I have no idea what was done or said. All I know is when I came to I was in the behavioral part of he hospital locked down. They said I was acting as if major depression had come over me. Of course it did, depression and this go hand in hand.

There are times when the meds I have aren't enough and the 3 months between visits make it hard to see "my" doctor. So I will go because I'm in agony and I really don't have any support in this so a safe place is welcome. But now it's the answer every time since it happened once to send me there. This was never a problem or thought when I was serving or before. They would treat the pain til the major part of an attack was gone. Now, just garbage. They have me questioning myself. Not really, but these quacks have a way of turning anything you say on you. I know I get depressed sometimes and I know why. If I had no pain I'd have no depression. Years of life before TN and a lot of time with it remind me of that. It's just irritating that this is what my life has become.

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Permalink Reply by Richard A. "Red" Lawhern on December 10, 2011 at 8:47am

Matthew, you have a legal right to receive a copy of your medical records from the Veteran's Administration. I think you need to get a copy and have it evaluated independently by a psychiatrist who evaluates disability cases. If you were suicidal and that condition was recorded in your records, it could be biasing the VA folks to downplay the medical treatment that you need.

For whatever this is worth, if the VA idiots have stooped so low as include the term "conversion disorder" anywhere in your records, then you need to get it expunged (deleted). There is no such "disorder", regardless of the blithering nonsense incorporated in the American Psychiatric Association's Diagnostic and Statistical Manual (APA DSM-IV). The organization of psychosomatic disorders is under very direct challenge in the next cycle of publication for the DSM. I am one of those who has submitted commentary through the public gateway for such comments to APA practice committees. Likewise, the Medical Advisory Board of the TN Association has recently published a short note on the TNA site, clarifying that so-called "Atypical Facial Pain" is not and never has been a psychosomatic disorder.

The times they are a'changin', Matthew...

Feel free to get back to us as you sort through this.

Regards, Red

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Permalink Reply by Matthew Tabb on December 10, 2011 at 12:04pm

Thank you Richard. That info is helpful. I appreciate the help.

Richard A. "Red" Lawhern said:

Matthew, you have a legal right to receive a copy of your medical records from the Veteran's Administration. I think you need to get a copy and have it evaluated independently by a psychiatrist who evaluates disability cases. If you were suicidal and that condition was recorded in your records, it could be biasing the VA folks to downplay the medical treatment that you need.

For whatever this is worth, if the VA idiots have stooped so low as include the term "conversion disorder" anywhere in your records, then you need to get it expunged (deleted). There is no such "disorder", regardless of the blithering nonsense incorporated in the American Psychiatric Association's Diagnostic and Statistical Manual (APA DSM-IV). The organization of psychosomatic disorders is under very direct challenge in the next cycle of publication for the DSM. I am one of those who has submitted commentary through the public gateway for such comments to APA practice committees. Likewise, the Medical Advisory Board of the TN Association has recently published a short note on the TNA site, clarifying that so-called "Atypical Facial Pain" is not and never has been a psychosomatic disorder.

The times they are a'changin', Matthew...

Feel free to get back to us as you sort through this.

Regards, Red

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Permalink Reply by SF Bill on December 10, 2011 at 12:37pm

Hi Matthew

It sounds as if you're describing private hospital difficulties and not the VA ( Veterans Administration ) Have you had any luck with the VA? I know it gets a bad rap but many will tell you once you're in the door, it's ok. I've only a brief history with the VA. I'm interested to know how many Vets we have on our site and their VA TN experience

I think most of us here experience various forms of depression. My meds have brought me to a tolerable level of pain. I'm much better than three years ago. I remind myself of this when the world turns "blue". Sometimes when I'm bummed, visiting this site lifts me up. Other times, I can't come near it. It ain't easy Brother. Last night I looked at the stunning full moon shining above beautiful San Francisco Bay. I got sad. Getting sad made me even sadder. I'll try again tonight.

SFBill

Navy Vet

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Permalink Reply by Richard A. "Red" Lawhern on December 10, 2011 at 2:09pm

As you know, Bill, I was an Air Force officer for 21 years. Though I and my wife have had our encounters with "military medicine", neither of us has ever needed to use a VA Hospital or facility.

Regards, Red

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Permalink Reply by Jackie on December 10, 2011 at 3:05pm

hello again Matthew. This is an interesting article to me. I can offer no help unfortunately as I am from the UK and have no working knowledge of either health care systems you describe. Somewhere it is shocking that a man who has been willing to lay his life on the line to protect his country is treated like this. Well on analysis, it is shocking that anyone is treated in this way. I can tell you I have read reports from our veterans stating they feel they are treated in the same way.

You are still the same pained man that was helped in a better way before and it is about time someone took
that on board. As ever, I wish for better for you soon.
Your friend, Jackie

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Permalink Reply by tyutchev on December 11, 2011 at 12:42pm

Hi, Matthew. That treatment was outrageous. I support you every step of the way. Best wishes, T.

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Permalink Reply by Min on December 17, 2011 at 6:29am

If they only knew how baad it hurts............

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Permalink Reply by booklass on December 27, 2011 at 10:25am

Matt, I'm ex-Army. I have become more and more aware that the medical treatment in and out of the military is mixed. I agree with what Red said, and I also might suggest that, if you have not done so, you talk with a doctor who is a specialist in pain management. Since TN is still new to me, I am not an expert, but I am aware that disengagement when dealing with severe pain is a NORMAL response. However, it can be misconstrued by some medical personnel not familiar with chronic pain management. It sounds like that may have happened in your severe attack. It's a automatic coping mechanism in severe instances. The only problem would be if you stayed in that mode, but you are not. What I am saying is only based on what I have read in articles elsewhere a while back when I was dealing with chronic pain due to an autoimmune disease. I have not dealt with a pain specialist yet, but it is something I am considering. I don't know if it would help you. I suppose it depends on the person you get. And isn't that the rub? Wish you the best.

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Permalink Reply by Phoebe on December 30, 2011 at 3:38pm

Red, It is one thing to know our rights and another thing to convince others we have the rights. Without hiring a lawyer what can we do? I believe I saw mention of contacting one of our politicians. Was that from you? Congrsesman/woman? What do we say. Probably should wait to include personal medical info? I want to follow up with the person who investigated the complaint I made regarding hospital care received. I was honest and included the fact that I was not behaving as the best patient in the world, but being new to this disorder I wasn't quite together. And this came back to bit me in my buttocks. I used your form once with a positive outcome but it did no good the second time.

I really want to point out that I understand the importance of triage and how it is supposed to work but they need to rework it so that ANYONE with severe pain is seen BEFORE that individual with cold symptoms, etc. no matter which one walked in first.

ALSO, I don't like to fib so when the nurse asks what is my level of pain and I am not in the middle of an attack I say 0 or 1. I tell them if they were asking in the middle of an attack, like when I was waiting at the registration desk it would be 1,000000000000000.

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Permalink Reply by Richard A. "Red" Lawhern on December 30, 2011 at 6:41pm

Phoebe, at times I think the main thing we have to do is not to "convince" others we have rights, but to assume we do and act with confidence even in the face of opposition. I have no compunctions about deliberately embarrassing other people in a calm tone of voice, by pointing out that what they are doing is extremely harmful, bordering on abuse of a patient. I also believe in follow-up letters of complaint to Hospital boards of directors, and regional health authorities (in the US, State Boards of Medical Examiners).

When somebody asks a patient how much pain they are experiencing, my approach might be to use paraphraases of two quotes I have heard, combined: "Trigeminal Neuralgia pain is widely recognized among practicing physicians to be the worst form of pain known in medical practice. For many people, even the most powerful opioids don't even touch it at any dose level that will leave us conscious." AND "The McGill Pain Questionnaire records pain on a scale of 1-10, with ten being the worst pain imaginable. Today I'm having pain at 50 on that scale."

If the Attending Physician Advisory form was rejected, then write the hospital board and demand that the attending physician explain in writing why he or she refused to act upon a plea for emergency help accompanied by documentation of your medical condition. Send a copy of your letter to the editor of the nearest large city newspaper, with a CC line below your signature on the copy sent to the hospital. BELIEVE me, that will get somebody's attention.

Go in Peace and Power... and never give up.

Red

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Permalink Reply by kris765 on January 3, 2012 at 4:46am

My life situation seems somewhat similar to yours but i only have increased pain /depression when my mother continues to knock me down as i advance at all with my condition. I can't stay away completely because she took my daughter from me and accuses me of having a drug problem just to push me over the edge- and it works. My doctor is wonderful but it is the nurses i'm scared of but I think they may have more understanding after security was called on my 20 yr old son at my last RF procedure. I had been caught driving myself froma RF procedure before because i have no 1 to help me and i had to threaten my son that he take me or I was making him move out of our home then he was furious at the length of time it was taking for my procedure - it had been 2 hours since they took me back. He was yelling down the hall for some1 to unhook my IV cause we had been there long enough and the security came and even followed him out to get the car because I assume they thought he was going to leave me. The nurse was very disturbed and i was in no condition to be leaving the procedure but they gave in to his threatening attitude as most ppl do. I told her I would be fine that i was going straight home and eat and lay down so they wheeled me out. I wanted to stop for food but i knew better than to ask!! The great moral of the story was that I did have to throw him out of our home. That night as I was out from the RF procedure he stole all my medication- when he had never stole a pill or $$ from me in all the 14 yrs of my medical condition ( although - my 22 yr old son stole anything of mine he could get his hands on from the time he was in jr. high school) because he seen me suffer from his brother stealing my meds and watch me suffer for days and weeks until it was time for a refill. Are you on an antidepressant or take anti-anxiety medication?? Amitriptyline is and anti-anxiety, anti-depressant, sedative (for some ppl but not me) and has an unlabeled use of headaches and I have to have this for all the reasons listed but i just wish the headaches didn't take over all the chemicals so it did help me sleep !!!!! Having no 1 to support or help me has increasingly destroyed all my quality of life thru the holidays and all it would have taken was my sabotaging mother to let me see my daughter on the holidays but she found out that in the summer I was getting out and meeting ppl and had felt a small amt of normalcy since '05 when she got my kids removed from me and immediately Iwas completely debilitated to the couch from the stress induced pain. My own mom has not stopped in - what -7yrs??? I just joined this sight as a last result of getting support and get my pain back stabilized to get my career back and then a out of town lawyer to get my daughter back. !!!!! If u r not any any depression medication or the one ur on isn't working find 1 that will because i had been on a few b4 I found the 1 that helped!!!!!!!!! God Bless and best of luck:)

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Permalink Reply by Phoebe on January 3, 2012 at 6:04am

Not only do I suffer fro TN I have the honor of suffering from bipolar 1 severe mixed, ADHD, and severe anxiety disorder. I have my problems but nothing that compares to what is described in this thread. I do think I will develop more mental health issues if I don't get this TN business taken care of. I was wondering, has anyone thought of showing this site to those people who are creating such a hostile life? Even judges and other legal people and non-believing medical personell would benefit from seeing some of the posts on this site. I'm going to try something, I'll let you know how it goes.