Hi Vic,
I truly hope your days are going better. I was wondering if this is the tablet you were talking about?

http://60minutes.yahoo.com/segment/21/memory_drug

[Vicc]

Hi Roz,

You are an expert detective indeed.

As a former psychiatric social worker, I am all too aware of the hazards of self-experimentation; especially when I'm planning to remain deliberately unaware of the details of the research involved (so as not to contaminate my expectations). I have decided to ask my daughter, who is about to start grad school in social work, to review the research and alert me to anything she believes I should know.

I wish I could include my neuro in my plans, but I feel he would just do the common-sense thing and tell me to stop. Why not just stop?

First, 60 minutes would not have discussed it, opening the door to such self-experimentation, if there were any known dangers. More important, I think I am clearly suffering from a PTSD that is destroying my quality of life to the point that I can't work and see suicide as the only release from the emotional pain I'm going through.

I haven't found any words to describe the Hell my life has become except to say I believe that the PTSD is already killing me; my continuing weight loss is approaching a dangerous level despite every effort to reverse or at least stop it.

I mentioned quality of life: I am bed confined; too weak to transfer without assistance or perform any of my ADLs. At some point I will reach the point where I cannot live at home, which would mean a nursing home. Many people can accept this alternative, but I am not willing to surrender my autonomy to the next CNA on shift. I manage my meds better than anyone else could, and besides, nursing home food would only aggravate my weight loss.

I know that suicide is almost universally rejected, but while I believe most suicides should be prevented, I don't believe it is always wrong: Depression is the leading cause of depression; depression is treatable and suicide would almost always be a mistake. Those in terminal stages of a disease, however, should, I believe, have the right to choose to avoid needless suffering.

Quality of life is important to me, and while PTSD is not a terminal disease, it has, in 3 years, brought me from an active (mentally) and passionate advocate of what I consider the only realistic hope of helping people achieve significant remission and an opportunity to live again; to a lethargic, wasted man unable to even summon the energy to talk to others, much less argue my position. My life has become meaningless to me; all that remains is the constant battle against the most terribly painful thoughts and memories. Today, I have no desire to live another day. I think the only thing that can restore that desire is the ability to work again; I have made so many attempts but all have failed.

At any rate, I have no plans to take my life in the next year. I think life is impossible without hope, so I must still have hope (even if this self experiment fails).

On the other hand, besides weight loss and quality of life, I have been taking pain meds of increasing potency (and destructiveness), every day for 27 years. I can't expect my liver to last forever.

I think few would understand why I haven't left my wife, after all, it is her behavior that led to this PTSD; I don't understand myself. But I haven't left and probably won't. Even fewer would understand my concerns to avoid leaving her penniless, but they exist. In April, 2008, my disability from employment with the state will end, as will $69.000.00 of life insurance. Before then, I will have to make a decision. If I am still alive and losing to PTSD, I am sure of what I will do.

All is not hopeless, however: For years I have been getting retirement benefit statements from the state, each telling me I have none. Then two months ago I got a statement that I had now been vested and at age 65 will receive a significant lump-sum option and a couple hundred a month in benefits; enough to survive on. If I can find a way to write again, a way to find meaning for my life, I will have enough work to last me for years; this fight against the medical establishment will not be quick or easy, but so long as I can affect one life, mine would be blessed.

This is why I am willing to take a minor risk in experimenting with this drug. It is safe and effective, the risk of overdosage minimal and its potential, in my life, great.

I think anyone else reading this article and thinking of trying this therapy needs to know that it is not going to relieve the depression caused by RSD or other factors. It is intended, as I understand it, to combine a maximum concentration of the negative thoughts, feelings and memories of a traumatic event with a drug that will minimize the emotional affect of these things; hopefully permanently. It is not a panacea for depression.

Do you suffer from PTSD? How do you know? Self-diagnosis is unreliable; in fact, though I have used the word and have training and experience in diagnosis and treatment of mental health disorders, my self diagnosis is tentative at best. It is only the terribly dramatic effect these thoughts, memories and feelings have had on my life in such a short space of time that lead me to this self diagnosis.

I would try to learn a diagnosis if that were possible, but it isn't; I'm bed confined and while our "victory" over the mental health center offered some hope when hope was needed, it provided no real help. My "therapist" was much more concerned with regaling me with stories of his experiences as an NSA linguist than he was in talking about what I needed to discuss. There is, of course, no hope for any further in-home assistance.

I must choose between self-experimentation and continuing as I am. For me, this is a no-brainer...Vic

[LisaM]

Vicc, you are a very intelligent man, and one with a degree in social work. I'm sure it's a "no brainer" to you also that if you can find a reason for your deteriorating weight loss, then you will also, more than likely, gain some of your strength back. And, it's also a "no brainer" that the way to go about tackling several issues at once is to take them one at a time. So...focusing just on the weight loss:

What has your doctor said about your weight loss?

What have YOU done about your weight loss?

Is your weight loss because you aren't eating more calories than you need to maintain your current weight?

Is your weight loss because of a medication you are taking?

As for your depression...again, being a social worker, you know why you are depressed. And you also know that people with depression cannot just "snap out of it." You know you have ptsd, and you also know you have an abusive wife that you are not willing to leave. You also know that I run a website (in my signature line) that if you go to, has a section on "domestic abuse" with some very good articles and websites. There are also other resources all over the web. You also know, being a social worker, that you "fit" into the classic "victim" category for domestic abuse. You also know why you stay. perhaps there is the hope that things will change, perhap you remember how she "used" to be, whatever. You have the degree, and most likely you studied this issue in your quest for that degree.

Additionally, "doctors make their own worst patients" and being so, so do social workers and/or counselors. You need to get your OWN counselor...someone to help you work thru these issues in your own mind. Let me ask you....

If you, as a social worker, had a client come in who was saying the things you are saying, what would you advise him or her to do? What treatment plan would you give him or her? And, the big question:

Why are YOU not as important as that patient?

I thought about this all weekend, and wondered what your answer to that would be, so could you answer it for me, so I don't have to "guess" anymore?

[Vicc]

Hi Lisa,

I had to think about replying to your post; people who don't know me have no idea of what I've posted about this over the past couple of years, others simply couldn't care less, but from replies since I've returned, a few people are genuinely and seriously concerned about me; I have shared many things with them and having gone this far it wouldn't be right to just ignore their feelings about me. Anyway, this is a support forum and you (and my children) are my only supports.

My doc is a neurosurgeon and admits he knows nothing about nutrition. He has, however, arranged phone conferences with two medical nutritionists. My weight loss comes from not eating enough, so for the past year I have concentrated on eating constantly and until I feel uncomfortably overfull almost all the time. This has resulted in a change in loss from 4 to 5 pounds per month to 1 pound, but I can't seem to break that barrier.

There are good reasons for saying I have been depressed my entire life, primarily a teen age mother living near Hollywood during the midst of WWII, who simply ignored me in favor of partying. I was severely malnourashed when my grandparents took custody of me at 10 months old.

It took years before I began to address this depression and my life history clearly reflects this; I dropped out of h.s. with the 2nd lowest GPA in the history of the school (which graduated 1,000 students a year), and joined the Marines with the singular goal of being killed in combat. Since we weren't at war with anyone, I entered a monastery after being discharged; I would simply hide from the world.

I began dealing with my depression when I was 30, and have sought counselling several times when I feel I need help. It is totally impossible to get therapy today, I couldn't endure the pain of traveling to the MHC once a week and can't sit upright for an hour without severe pain, and the MHC has made it clear they will no longer provide any further in-home counseling. My "therapist" is totally incompetent anyway and was no help at all.

While my wife has tried to assault me several times in the past, the last time was 1983, but was always easily restrained and "never laid a glove on me". Physical abuse is not an issue and today she devotes herself to my welfare in every way she can.

My problem is the she began having sex with other men soon after we married, while I did everything I could to pretend nothing was going on, or after she began openly having multiple affairs, pretending it was "just sex" while repressing my true feelings. Three years ago my defenses collapsed and after connecting the dots could no longer pretend her explanations for many things right from the start of our marriage were anything but lies to hide her infidelity. I wish I could just leave her, but I can't. I still care about her.

I have already said there are good reasons for some people decide to end their lives, so if a patient were able to show me such reasons exist I hope I would respect his/her decision. My "therapist", my neuro and some friends here know I plan to end my life before my 65th birthday. It is not my first choice and I continue to look for an alternative, but if I don't find one, the end will come as a blessing.

There are many other issues involved in my decision, but if I can find a way to return to writing about RSD I would find the reason to want to remain alive. Continuing weight loss means I can't meet that goal; I am perceptably weaker today than a month ago.

I certainly would not consider going into huge debt if I find a more serious condition exists, nor would I consider a nursing home. Why do either to try to continue a hopeless and unhappy life. And despite everything my wife has done, it is my reaction that is the real problem; I should get out or get over it, but can't seem to do either.

Things are not quite a bleak as the picture I painted here and in other posts, but I hope to talk about that in a reply to Jose's post on FWs thread about rude people...Vic

[LisaM]

Vicc, I hope you didn't think my reply to you was rude...because I did always hate that sometimes my words come across that way when they weren't meant to be. I admit that I DON'T know you that well, because on the old board, though I was registered there for a long time, there was a time I took a much needed "sabbatical" from all the medical crap. After going undiagnosed for 5 years, running from doctor, to specialist, to PT, to test after test, I just wanted to LIVE for a while PRETENDING my life was normal and took a break from it all. My doctor got mad at me for it, but obviously he hadn't been a victim of chronic pain, so he couldn't understand the need I had to "take a break" from the crap it all involved. I was tired of my life revolving around trying to get a diagnosis. So, during that break, I also left the boards for a while, and I've a feeling it's when you began to open up about some of your more personal issues. BUT...the Vicc I remember always wrote about RSD from the medical standpoint, and was very technical, and I recall I always had to ask you "okay...now can you please tell me what this means in words that I can understand?" LOL! cuz admittedly, I can't comprehend all of the medical mumbo jumbo as well as your brilliant mind can (which, of course, leads me to wonder how the heck you could have graduated so low in your class, since you have such a BRILLIANT mind!).

Anyway...I know that NOBODY can stop you from being depressed. And I know you can just "snap out of it." I have a girlfriend who has been married for years to a man who JUST found out he's probably been depressed his entire life. He's actually GLAD he found that out, because he realizes there's a "whole world out there he's never seen." He's getting treatment thru anti-d's as well as counseling. This guy isn't social, cannot make his own decisions, and my girlfriend has wanted for a very very long time to get a divorce as their marriage hasn't really been a marriage, but more of a friendship (they are complete opposites as they've grown in different directions...she's very outgoing, he's very shy....she has gotten her masters degree, he's a mechanic at a chain store and has no desire to get any other certificates...she likes traveling to europe, he likes camping, etc). But, she doesn't feel she CAN divorce, cuz he'd be totally lost. She says he's such a good man, there's nothing bad she can say about him...they've just grown in different directions. So she's very stuck.

Anyway, my reason for that story was to tell you that I understand the "being deprssed your whole life." But the difference is that I see my gf's husband as looking FORWARD to the rest of his life, and you NOT. BUT...otoh, I see WHY you don't. Your future is chronic pain...his is pleasure, and seeing things in a way he has't seen them before. There's a huge difference.

My point in the other post in this thread was't to be rude. I just read such UTTER DISMAY in your posts that I didn't see you "breaking it down into smaller pieces" and trying to see how they all tie in together, and how solving ONE could help solve another. And I'm the type of person who likes to try to "fix things" for people. And I wanted to try to help "fix you." But...i realize I can't. The only one who can is YOU.

In my state, we have resources for homebound individuals. I know you spoke of a "useless counselor" who came to see you...but that was just ONE. Do you think, perhaps, that a different counselor, one who is well versed in the depression caused by chronic pain, would help more? Sometimes you have to go thru quite a few before you find one that you "gel" with. At one of my PT's I had to go thru a counseling session with their therapist, who did counsel me in that way...how CP and mental health all tied together. And you know all that...but you also know that when your thinking hurts, you hurt worse. So I'm sure that's ALSO partof it. When your MIND feels a bit better, so does your body. Not COMPLETELY, BUT MAYBE A LITTLE. So, perhaps a different counselor would help.

I'm so glad your wife treats you better now. But, hon...you are still holding on to the past SO TIGHTLY that it's still affecting you today. It was a LONG time ago that she treated you badly. It's time to let that go. You said she is devoted to taking care of you now...so she IS a source of support, just like we are, right? Or is she????

I just want you better, Vicc. Nobody wants to be in a nursing home, or be broke, or be waiting to off themselves. That's not a good thing to "look forward to." I don't like hearing ppl talk like that because I know first hand what it will do to your family. They will NEVER be the same. No matter what, no matter HOW you try to make them understand, they won't. That's why I told you the story of how my ex's father's suicide affected not only his CHILDREN, but his grandchildren, and even the "extended family" such as the daughter in laws for years and years. And I know you don't want that for your kids, your wife, or your grandkids. And I know you don't want to be known for the man who "gave up" because he couldn't take it anymore. And truly, that's how it will be. Cuz as I said...no matter what, no matter HOW HARD YOU TRY to tell them what you feel, it will still come down to what THEY think, not what you SAID. For YEARS after my ex's father killed himself, nobody would listen to the words in the letter he left. Nobody cared about the reasons in that letter. Instead, they all went off on their own tangents, and blamed each other for his suicide...and the whole family fell apart. It's a terrible thing. it truly is. And the love I hear in your "voice"when you speak of your son and your grandkids is just truly amazing....and I sit here and imagine them "afterwards." And I can't stand it. Cuz I imagine them like I see my ex's family now. And I don't want that to happen to them.

I know I have no "right" to care about how your family feels, or no right to really predict how they may react or anything like that. It's possible it will be completely different, that they WILL understand, and that it won't be like I "see" in my mind. But "personal experience" just gets in the way of my rational thinking here, and overtakes me. And I place that into your situation and it just...well, I don't know. But I don't want that for your family. So instead, I try to help. and I guess I should just shut up, cuz I CAN'T help. And I know that. So I'm just beating my head against the wall.

So....I'm sorry Vicc. I'll just keep my mouth shut. It isn't fair of me to interject my personal experience into this. It isn't fair of me to try to pull you out of this cuz I've also learned from personal experience that a depressed person cannot just "snap out of it" and that they have to want the help and actively seek it out themselves. Nothing anyone says or does is going to change your mind. It's going to be something that you come to yourself. No matter how many bazillion words I type, it still is going to come down to YOU. So...I'll drop it. Just make some promises to yourself, please....to NEVER stop trying to get better. Don't just "give up" on yoruself. At least use this time to TRY to save yourself, and don't jsut sit there and wait until you're 65th bday or whatever date you've chosen. You're too brilliant and kind a man to waste those days. Don't promise me that...but promise YOURSELF that...k?

Again...I'm sorry. You'll still be in my thoughts and prayers

Hi Again Vicc,
I hope these lines find your day full of hope. I am certainly no detective. Just a good guesser.

What wonderful news about your daughter. You must be very proud of her.

I haven't had couseling yet. I have a dear friend from high school that is in the field. I would't mind going to couseling if I could find one very competant.

I had some trauma when I was 16, from a stranger. It took several years to get over it. I considered myself a onion and just needed layers of inner healing done. I had to forgive him so it would't hurt me.

I also had to forgive a drunk driver that killed my sister while she was walking. It was his third DUI. But I realize he was just sick.

Vicc, I really would't know if I suffered from PTSD. I am in 100% agreement this drug needs to be very researched. My life hasn't been violets and roses all the time, but before RSD hit me I loved life. I hope down the road some I can go back to work, if it's only 10 hours a week. I also realize I could not work under anyone's scheldule.

I was able to drive my youngest son to the bus stop this morning. I have to not despise small beginnings.

Hope you have a beautiful day. Hugs, Roz

[Vicc]

Hi again Lisa,

I really am too tired to try to reply right now, but this seems to be my day for saying things wrong, otherwise you would not have thought I was offended by what you wrote.

I will say that I know I will never overcome depression, but feel I can manage it with medications. My problem is that I do still cling to the pain from her infidelities; despite trying everything I can think of to release it.

I spent time trying to really understand what forgiveness is, and know that I need it more the she does. At one point I thought I had achieved it, but it was just another way of pretending. I want to learn how. I have forgiven others, but this has been too big for me.

As a trained psychotherapist, I don't believe psychotherapy can help with PTSD, all of the evidence points away from that.

There is a therapy called cognitive-behavioral therapy (CBT), which uses desensitization (if you are terrified of snakes, take slow steps in overcoming that fear until you can finally at least be close to one behind a glass window; whatever the problem, if it is seriously affecting you, keep taking small steps toward solving it enough to live with it.

I tried CBT, but even the first tiny step filled me with such immense pain I couldn't continue. It is my problem and I have to find a way to live with it; thus far I haven't.

Anyway, as I said, if I could find a way to write something before the thoughts and feelings could interrupt it, I would have my reason to want to live. Thus far, that too has been impossible for me.

Finally, even though I would not mind dying today, some jerk said you can't be killed until you fulfill your purpose in life. My only purpose is to write abou RSD and help you and others learn there is real hope, so if he's right, I have to do something to overcome my PROBLEM, before I can die. If I can do that, and barring some terminal disease or a nursing home, I won't have a reason to want to die. Not now and not in Jan of 2008...Vic

PS: My GPA during my last two years of college (after I was injured in '79), was 3,915. Two "B's" can kill you when you only have 60 hours left. I wasn't dumb, I was a very badly damaged kid...

[fmichael]

Dear Vicc -

I just want to say that I agree with everything you have said regarding personal autonomy in this matter. fn.

That said, know that you're loved.

Mike

fn: It's what Sartre referred to as the only legitimate question.

[Goodn'Plenty]

Interesting thread

Roz- I think getting a life changing illness is enough to give you PTSD.
It can be one event - a culmination of things- but that one event is enough.
It HAS changed everything!
I think all of us could benefit from counselling of one kind or another .

As I am an alternative junkie - I went o see some alternative counselours .
Some who believe that pain is encoded at the celluar level, and through certain exercises/treatment one can actually erase those events which cause emotional pain(which in turn can cause and or /add to physical pain) from true physical pain- ergo you are left with just the physical.

I can say it was truly a fascinating experience-intense heat(not the RSD kind ) when emotional pain left my physical being .

There is another "traditional" therapy geared specifically towards PTSD. It is called MDR....I believe - not 100% sure.
It is not one of the ones mentioned above.It does have a much higher success rate as I know many people who have used it as their primary therapy tool with much success.Many therapists are trained in this technique accross the country.
I think in one way you can look at any trauma which causes you seek therapy as PTSD.It is all a matter of degree.
We all have them - Ozzie and Harriet home life exists only in TV land.


There are also counselours trained specifically for patients with Pain Issues.
If you have a good Pain Management doctor they should probably insist that you see one and would know the name of a good pain psychologist.
Again , this has changed everything!


Vicc - you keep saying you want to start your writings .
If I may be so bold to say that your contribution lately to this webpage has been nothing short of brave in content , and articulate and consistent in quality and quantity of writing.
Your thoughts are clear and well formed and you have responded to new people's questions on RSD with informed writings.
I'd say your writing is taking form and is more than a beginning
You are just about there , my friend!!!!
Hope is alive !
Maybe it is hard to see from that side- but you are well on your way.

Having said that, a little gear shift here - I am with Michael.

There is a clear distinction IMHO between euthanasia and suicide.

I am a firm believer in the first and I have no say in the second.Not my call.

All of us here cannot predict our futures and /or anothers tolerance to pain ,or anything for that matter.
As with anything what works for one may not work for another.

I try to live my life by never walking a mile in another's shoes' .It is NOT going to happen.

New medical technologies have allowed people to live way past their expiration dates without any dignity and ...hope.

I would suggest a living will for everyone so that their thoughts on the matter are well known- whichever side of the coin their views may fall.

I have no intentions of doing anything of the sort right now -
However If I feel like this at my age give me a call in 30 years .
I have no idea where my "I've had enough"threshold may lie- how many more surgeries /injuries /meds etc I want to put me-mind/body and soul through before I have had enough .
I may just head to Oregon and have a talk with Compassionate Club.

It is my call.

On that note

Happy Holidays
I wish all much peace

Hope is very much alive

(Mike - no buddhist philosophical discussion on that one OK )

GnP

[Vicc]

Hi guys,

The doc's office called yesterday to announce the scrip for propranalol had been phoned in to my pharmacy, later my wife came in in a lot of pain and told me she had fallen next to the car and laid on the wet ground for some time before a neighbor heard her cries for help. Among more serious things is the fact that she won't be picking them up for a while,

(Few of you know anything about her except the negatives I've discussed in such detail; she suffered a stroke during a 1980 surgery, has had two unsuccessful abdominal surgeries to repair incisional hernias and is on the verge of developing a probable herniated disk in her lower back, lots of back and leg pain. She is also diabetic and very overweight

(Despite this, she has done all she could to ease my life since my last injury. I guess I'm trying to say that she isn't the totally self centered person I've described to you, that her promiscuous sex was not intended to hurt me, that I understand that intellectually but I seem totally unable to deal with my emotional response to her behavior and what I can only describe as my deliberate attempts to pretend that nothing was going on -- or touching me -- despite undenialbe evidence I simply refused to think about

(I keep talking this way because I know no one can really understand how I can be so overwhelmed; she had affairs, get over it or get out. It aint that easy, not for me at least).

Anyway, the pills are here. Now the hard part: focus upon the incident(s) that upset you then write down everything you remember about the incident(s), focusing on your thoughts and feelings at the time and since the incident(s) occured.

I have gone through nearly three years trying to avoid thinking about the incidents(s), yet obsessing over them, and diverting my attention every time they have come to mind; especially the part about my thoughts and feelings. Basically, step I is to do the one thing I want to do least.

When/if I begin this "miracle cure", I'm far from certain I will even be able to complete a small part of step I.

GnP, leaving aside your suggestions about possible alternative therapies, which are physically impossible for a bed confined patient to access, and focusing (still) only on me, it did take courage to write my original post about this.

I thought about it for a long time, finally concluding that there are a wide range of forum members, some of whom don't like me; most of whom are just plain bored with people who air their personal problems, and; some people who might see how serious this for me and who would help if they could.

At any rate, I had no choice. I would either ask the only people I know for their help or I would try to follow through with my deranged fantasy of returning to a place that had the most positive significant impact on my life and find a way to pretend I would somehow be ok.

One of the first replies shattered any hope of that fantasy (I still remember it well, Jose). No one who dislikes me has ever used my posts as a foundation for a cheap shot (I didn't think you would). I can't imagine lasting this long without the help I've gotten whenever I've asked.

I can write at this forum, either about RSD or poor me, because it is conversational, but anyone with only an undergrad degree who thinks of writing for even a minor medical journal has to take into account that they face a much higher standard. I am unable to maintain the tight, structured writing necessary because my mind is constantly interrupted by things I don't want to think about.

Thank you for your comments about my writing skill. A year ago (or so) I finally re-reread my first article on RSD as an ischemia-reperfusion injury, and can only say that I hope every last vestige of it has finally disappeared from the Internet.

It was awful. I had made A's without any serious effort on every paper I wrote in college, but I hadn't been competing against Harvard students. Since that first article, I have learned much about writing and editing, but that doesn't help much if you can't think.

That is the gist of why I have posted so often about my PROBLEM; my friends here may not understand why this has been so destructive in my life, but they know it has been. They know because when I'm not hiding, I'm talking about it.

So, to my friends: I do ask you to pray for me as I make yet another attempt to find a reason to want to live. It really is that serious, life has so little joy when you no longer want to live...Vic