Forgetting TN or ATN

I feel I must share some of my insight on having ATN.

My husband has always been the type of person who says work thru your pain and just put it out of your mind. Forget you have it.

I have been doing better at this, since I have a medicine that works now. I have achieved good pain control, finally, over this monstrosity of my trigeminal nerve.

There is one thing tho. I have parasthesia, or numbness on the right side of my face.

There is no way to "forget" about this little interruption on my journey of life. It is always there.

So even though I look completely fine...I feel like I look like two face and that I have a forked tongue!!

I guess the moral to this story is...I can't forget about what I have. My husband may be trying to forget, and I completely understand that. But it is impossible for me to, without the pains' constant interference..not being able to feel on that side is more noticeable to me.

It has only been three months since the pain is controlled for me. Hopefully given more time, I will get better at not thinking about what I cannot feel anymore. I am greatful for the relief of pain but wish I could get used to the numbness.

Laughter helps take the sting out of it!! :)

Hope you all are doing well. Min

I was tempted to say I always thought you did have a forked tongue and cloven hooves but that's just me helping you out with the laughter bit!

I am sorry to read this, that's awful for you but as ever in life give it time and you will get used to it, though maybe never like it. As for forgetting, sorry not possible when you have a side effect like that, I think the best you can hope for is acceptance. I am missing a part of the body that I was born with and people have told me to forget about it but how for heaven's sake. I see where it should have been every shower or clothes change. I have though accepted it. Or else I should go more crackers than I already am!!!!!!!!!!

J x

Min, there is a difference between forgetting and re-focusing. It is impossible for most people to consciously decide not to remember something. But it is quite possible not to "dwell with" the emotional sense of loss that can crowd in when you focus on a particular symptom. Parasthesia is certainly a bothersome symptom. But you really can find other places to focus.

There are techniques for replacing over-frequent negative thoughts or a sense of loss, with more constructive patterns of attention. Sometimes meditation and mindfulness are helpful. Other times, one can choose to engage with an activity that does not in itself remind you of the symptom. There are also mental exercises that help a lot of people. You can learn the tools in a short time in either of two schools of therapy (Rational Cognitive Therapy and Cognitive Behavioral Therapy) by working a few weeks with a psychologist who is trained to help patients trying to get over Post Traumatic Stress Disorder.

Go in Peace and Power

Red

How can people ask us to just deal with the pain... when they have no idea what this pain feels like???

There has got to be more public awareness and more access to pain medication for this. This has to stop. We, TN sufferers, are in pain and are not believed at times and asked to just deal. If a person was lying in the street bleeding, would you just let them bleed??? Seriously.. I feel this is an injustice.

HAHAHA that is funny. I have gotten better, I think. Red's suggestion of re-focusing has helped. I am looking at all of the positive's in my life. I think I will always miss it at times. Getting involved in other activities is for sure a good way to get past it. Thanks for the laugh. xxx

Jackie said:

I was tempted to say I always thought you did have a forked tongue and cloven hooves but that's just me helping you out with the laughter bit!

I am sorry to read this,that's awful for you but as ever in life give it time and you will get used to it, though maybe never like it. As for forgetting, sorry not possible when you have a side effect like that, I think the best you can hope for is acceptance. I am missing a part of the body that I was born with and people have told me to forget about it but how for heaven's sake. I see where it should have been every shower or clothes change. I have though accepted it. Or else I should go more crackers than I already am!!!!!!!!!!

J x

Stef:

You wrote in part --

Red, I only see my Psychiatrist every 6 months (the price keeps me from being there much more often). I am due to see her again in the next couple of months. I've been seeing her since the death of my husband in July of 2006.

I need to discuss with her that, for the first time in my life I actually believe myself to be severely clinically depressed. I recognize that this is a medical condition, but do not tell just anyone. I wonder if they will see my illness as a product of my depression rather than the other way around. The depression is, to me, clearly due to having ATN, the medications and complications/side-effects which come with them at the time in my life when I should be a strong, bread-winning, career woman for the future of myself and my children! Yet, I get up in the morning, and it seems as if I should be showering and getting ready for a commute to go earn money. I am unable. It's eating at me BIG TIME! I am clinically depressed. Ok . . .I digress. I intend to ask my psychiatrist about the therapies you mention below upon my next visit.

====================

My thought: if the subject comes up, I would recommend calm and gentle confrontation of your psychiatrist: there is no body of medical evidence which demonstrates the legitimacy of the axis in the Diagnostic and Statistical Manual of the APA which pertains to conversion disorder or complex somatiform pain disorder. NONE. Likewise, the medical advisory board of the TN Association has recently re-classified "atypical face pain" as a NON psychosomatic complex of symptoms of obscure (unknown) origins.

We know that pain and clinical depression are co-morbid disorders. Increasing evidence is emerging from functional MRI and blood genetics studies that chronic pain causes mutations to genes which influence mood. But there is presently no evidence other than anecdotal or financially self-interested claims of certain psychiatrists and psychiatrists, for the opposite relationship: depression does not "cause" pain, even though it can render us more vulnerable to an attitude of suffering.

Let me know how your psychiatrist appointment comes out.

Go in Peace and Power

Red

Well the pain's back now just different areas now. Blah.... and on the other side to boot!!! Don't have to worry bout the forked tongue anymore.... HAH!!

Stef;

You cannot forget, it won't let you.... at least you don't tell him Everything ( that is what I tell my hubby when he get's frustrated with me) and you have us to vent to. And don't be so hard on yourself, look at how far you have come through all of this crap. How many excruciating days of this with raising your girls and putting up with this. Come on. I can't even imagine how hard it has been for you. You deserve a medal or somethin for how far you've come. Seriously!!! Be proud of yourself Stef. You've come a long way baby!

Peace, Min xoxox

I understand what you’re saying Stef. I’ve found Cymbalta to be very helpful, but can’t afford it, even with the medical insurance lower cost. It’s been necessary to white-knuckle through it, but since depression is the least of my problems, I also can’t afford to spend too much time thinking about it.



I was very surprised when my pain management doctor ((( HE has a forked tongue and cloven hooves ))) told me that my depression was a psychiatric problem. Thanks pal!..make me feel like I’m being lumped in there with the worst of the worst. I appreciate that. Whether it’s true or just symantics - give me more to be depressed about!!! Just dealing with my doctors is enough to push me right over the edge!!!



Yes, it’s great to have tricks and methods to re-focus, but when you are in the grips of a major pain flare and trying to stay out of the ER (because the IV pain stuff they give me doesn’t help) it’s difficult to “go to my happy-place”…especially when the condition is beating you to your knees.



One thing I do use to help keep me on an even keel is - adjusting my expectations. I heard before that “Your Stress Level Is The Difference Between Your Expectations And Reality”. Makes sense. Now, if I don’t “expect” things to be a certain way, I’m not all bent out of shape when they’re not. It keeps me sane. Some might consider this as having a negative attitude and accuse me of creating negative things to happen. I just think of it as being realistic.





Stef said:

Stef:

You wrote in part –

Red, I only see my Psychiatrist every 6 months (the price keeps me from being there much more often). I am due to see her again in the next couple of months. I’ve been seeing her since the death of my husband in July of 2006.

I need to discuss with her that, for the first time in my life I actually believe myself to be severely clinically depressed. I recognize that this is a medical condition, but do not tell just anyone. I wonder if they will see my illness as a product of my depression rather than the other way around. The depression is, to me, clearly due to having ATN, the medications and complications/side-effects which come with them at the time in my life when I should be a strong, bread-winning, career woman for the future of myself and my children! Yet, I get up in the morning, and it seems as if I should be showering and getting ready for a commute to go earn money. I am unable. It’s eating at me BIG TIME! I am clinically depressed. Ok . . .I digress. I intend to ask my psychiatrist about the therapies you mention below upon my next visit.

====================

My thought: if the subject comes up, I would recommend calm and gentle confrontation of your psychiatrist: there is no body of medical evidence which demonstrates the legitimacy of the axis in the Diagnostic and Statistical Manual of the APA which pertains to conversion disorder or complex somatiform pain disorder. NONE. Likewise, the medical advisory board of the TN Association has recently re-classified “atypical face pain” as a NON psychosomatic complex of symptoms of obscure (unknown) origins.

We know that pain and clinical depression are co-morbid disorders. Increasing evidence is emerging from functional MRI and blood genetics studies that chronic pain causes mutations to genes which influence mood. But there is presently no evidence other than anecdotal or financially self-interested claims of certain psychiatrists and psychiatrists, for the opposite relationship: depression does not “cause” pain, even though it can render us more vulnerable to an attitude of suffering.

Let me know how your psychiatrist appointment comes out.

Go in Peace and Power

Red

Amen Sister. I second that notion. No expectations. No stress......... Yess ma'am. Take life as it comes.

Gloria, Min I can only agree with you. Expecting too much can lead to much disappointment.We need to have certain factors met i.e. mutual respect etc. But the consequences of high expectation can be devastating for some. My heart is in my throat when a member in a bad way writes " but I see my Dr on Wednesday........."

as if that will make all better in the world. As we know well that often is not the case, then more depression sets in and well, the downwards spiral into pain induced misery. We have all read it and grieved for them.

Set the bar a little lower and we may find some peace with all this. Maybe.