Title: VNS & TRD
Mew2you - August 7, 2008 12:35 AM (GMT)
Hi, I'm new to this forum and have been reading all the various posts. I have been diagnosed with TRD myself and am currently receiving ECT along with taking multiple medications. My doctor has recommended VNS and keeps pushing on me to get it done. He says that it will help me greatly. But from reading the various posts and studies on it, VNS doesn't always help and sometimes makes things worse.
I don't know what to do. I do know that I want this depression to end. I've even tried a couple times to commit suicide but it was obviously unsuccessful. I need some honest opinions on VNS. I need to make an informed decision. Your help would be greatly appreciated.
Thank you
Jules : cat :
gel61820 - August 7, 2008 01:12 AM (GMT)
Hi Jules,
First let me welcome you to the forum and give you a big :bigarmhug:
Many here have been in the same situation as you, so I will let those with TRD give you their input. I have VNS due to epilepsy but unfortunately it has not helped during the year since it was activated. But I remember what it was like to think should I or shouldn't I have the implant and after reading through this forum I felt it was worth the risk to try this alternative. That was my opinion at the time based on what information was available at that time. My suggestion to you is to do your research, then do more research, and when you are too tired to read another thread, be sure and read it. I know that seems daunting but you need to be informed of all that VNS can change your life, not just remove depression but also the side affects and health risks.
Another recommendation is to ask your doctor if he/she would have another patient of his/her's who has the VNS implanted contact you so you can talk to someone face-to-face who has gone through this surgery. That helped me, along with the very helpful people of this forum.
I just want you to know, through all of this, you are not alone. Regardless of whether you have the VNS implanted or not, there are many here who have traveled down the same path with depression, suicidal attempts, medications and ECTs. I applaud you for being so open and speaking so freely.
Hugs,
GEL
Mew2you - August 7, 2008 03:57 AM (GMT)
Gel, thank you so much for the warm welcome. That was a great idea to try to have another patient of my doctor contact me. And I will definitely keep reading those other threads. I just wish that this was an easier decision. I'm sorry to hear that your VNS didn't help. Can you get it removed? Or is there a chance still that it may help?
Thank you again!
Jules :Thanx:
gel61820 - August 7, 2008 02:27 PM (GMT)
Jules,
You are most welcome. I hope your doctor will be able to help you connect with another patient who has the VNS already.
I have a few upcoming appts with an epileptologist to see where we go from here. I am seriously thinking about having the VNS removed but it isn't that easy. It is just as expensive to remove as it is to implant, and unfortunately there are a lot of surgeons who implant who will not explant. However I would like to get it removed as soon as possible, for the longer you wait the less chance there is of getting all of it removed due to scar tissue. So all of those steps are ahead of me yet, but as for now it is still activated.
Hugs,
GEL
labrat - August 7, 2008 03:22 PM (GMT)
Jules,
I got my VNS October 19, 2005 for TRD. It took a while, but it has been nothing short of a miracle for me!! I now have no depression at all!!!
I know I am the exception to the rule, but it has helped me so much.
ECT's caused me to loose 30 years of memories and I still have short term memory problems.
Everyone has to choose for themselves, but I was at the point that I had taken all the medications and I was choosing death over living.
Best wishes whatever you decide. Keep us posted!
Dispatch - August 7, 2008 05:18 PM (GMT)
Hi Jules, and :Welcome: to the board!
I can understand your situation, wanting so bad to be healthy, happy, etc. I am glad you found this board before implant, I found this board after implant. Here you will find success stories, and horror stories. Please keep in mind everyone is different and responds differently to any treatment.
I was implanted for TRD. I have now been explanted because I should have never been implanted because I have a brain injury, and it is unapproved for use in a person with brain injury. The device created greater brain injury issues. There are also many other exclusions, so I want to direct you to the Physicians & Patients Manuals that you can read right here on this site. Please read both of them, ask as many questions as you'd like, and I know we all will do our best to answer.
I am in no way against VNS. I know it has been a blessing for many people with TRD & Epilepsy. What I am not happy with is the manufacturer. They do not give the patient the manual until after implant. They give limited information on side effects and adverse events. They do not provide the current statistics on these things either, what they provide is the study stats. In my case and many others, Cyberonics was finsished with us after implant. Many doctors think they are fully trained in the use of the device, but in my case, a serious error was done by my doctor not being completely trained, and Cyberonics knew I had a brain injury and still pushed to have me implanted.
Also know that Medicare and many other insurance companies do not cover VNS for TRD since the Center for Medicare & Medicaid Services decided in May 2007 that TRD is vaguely defined, and VNS was not appropriate in the treatment of depression. Cyberonics will tell you insurance will cover this, but please make sure you check with your insurance yourself. Before you know it, you may be thousands, maybe 100 thousands of dollars in debt. VNS does not cost $25,000 if you have been told that. I call that the VNS special of the week-it costs almost double what Cyberonics says it does just for implant.
You can also go to the FDA website and read the MAUDE reports on adverse events/side effects. They are very enlightening. All you will read is bad things, but they are credible accounts of what has happened to TRD & Epilepsy patients who received VNS.
Please look thru the board, and maybe you will find a treatment option for depression you'd like to try before VNS.
I wish you the best in trying to make the best decision for you. Please come back and keep us updated.
Dispatch B)
oreo - August 7, 2008 08:44 PM (GMT)
Hi Mew2you,
I had my VNS implanted for depression in May 2006. I had not found this message board...I didn't do a lot of research because I trust my doctor and this had been recommended for me years ago when I was a patient at the National Institute of Health.
I have received some good benefits in the areas of suicidal thinking and anxiety. I still take low doses of several meds...and I really didn't get much relief from the depression until the last few months when I started a medication for arthritis that just seems to have made a huge difference so far with my depression.
There seems to be no way to know whether a person will respond until after the implant...even then it may takes months up to two years to determine if VNS is helpful.
Sounds like you've tried all the meds, ect, therapy, etc. If you go into this knowing there could be major problems...but you feel it is the only option left...you're taking a calculated risk for a hoped for benefit. Sometimes we just have to do that for ourselves.
There is one major thing I would do differently...if you cannot afford this out of pocket ($65,000+ initially, hundreds of $$ over the years to pay the doc for adjustments...and then an additional $65,000+ every 3-8 years when the battery goes dead)...and you're depending on insurance --- you MUST INSIST that your insurance company provide you with an individualized letter specifically itemizing all the charges they will be responsible for paying and the length of time they will continue to pay for any necessary medical care resulting from the implant.
You can't depend on any typical "form letter" approving the surgery...or even saying there is no need to get prior approval or authorization for outpatient surgery. The insurance company is not obligated to pay even when they have sent you that type of confirmation.
My thoughts are with you...many of us have been right where you are now. Take all the time you need now and only go forward if all your ducks are in a row.
:Welcome: We're so glad you found us!
Mew2you - August 8, 2008 05:29 AM (GMT)
: th_idea : Thank you so much everyone for your replies. All your ideas and experiences are good to know. The more info I have the better off I'll be....at least I think that right now. :huh:
I stress out so easy and this is just putting me over the edge at the moment. I admire all of you for the experiences that you have gone through. You all kept going and trying to work out the issues you were facing. And now you guys are trying to help out others by sharing your experiences. I just happen to be one of those!
Honestly I have no idea how I found this web site. I was just doing a lot of looking and got lucky. I'm so sorry to hear of some of your bad experiences. It's sad that things like that have to happen. Then there are those with the good experiences from VNS. I guess you can never really know how you will respond. It's a total gamble. Positive or negative.
I need to look at that manual type thing that someone mentioned. Sorry, my memory is shot from the ECT. I'm actually doing pretty good right now but sometimes my memory is really bad.
I just wanted to thank all of you again who responded to my question. It is very much appreciated and will go to good consideration. Thank you so much again. You guys are very helpful and kind. I hope that all goes well for you.
: cat : Jules
Dispatch - August 10, 2008 02:55 AM (GMT)
:D HI Jules!
Hope all goes well for you as well, and you are welcome! Please do read the manuals, they are very beneficial. Hope to hear from you again soon!
Dispatch B)
Mew2you - August 11, 2008 08:12 PM (GMT)
I know this is probably a stupid question, but where is the Physician and Patient manual? I found a link in one post but when I tried linking to it, it was no longer good. Thanks
Jules : cat :
Birdbomb - August 11, 2008 08:19 PM (GMT)
Right here
Sometimes they change the urls.
Mew2you - August 12, 2008 07:14 PM (GMT)
I'm still unable to link to the manual. I've also tried under multiple different areas and I am still unable to link to it/them. I have been looking under the "manuals" discussion section and haven't been able to link up from those either.
I'm trying to read as much as I can to make my decision. The more I read the more scared of VNS I get. At the same time I am so tired of depression. I want my life back. I don't know what to do. I am pretty hopeless.
Sorry.
Jules : cat :
*Edited for content*
oreo - August 12, 2008 08:11 PM (GMT)
Hi Jules...
I've been where you are now...please just keep taking a minute at a time. There is nothing like the suffering of depression. Since you are feeling suicidal, perhaps you need to get yourself admitted. I know that's miserable too, but if you need someone to help you stay safe for a bit...then do it.
In BirdBomb's post where she says "here" and it is underlined...when you click on that - nothing happens? When I click on it a page comes up and you can click on the manuals. If that's not happening, you need someone with some computer smarts to work on it with you.
Don't let a pesky computer problem become more than a pesky problem. If you email or pm Birdbomb or Bernard or Dispatch I'm sure they will get you hooked up with a manual.
Even though the VNS has helped somewhat in my depression/suicidal thinking...it has certainly not been the "life saver" Cyberonics promised. I've had to continue to do a lot of work with my psychiatrist, therapist, and friends and family to keep my head above water.
It's tempting to think of VNS as your "last chance" and think that if you can't get it you won't survive. If you had never heard of it, you would continue to look for alternatives and help. Please let your doc or therapist know how much you are struggling.
You are in my thoughts and prayers! Anne
Dispatch - August 12, 2008 09:19 PM (GMT)
Hi Jules!
I clicked on the link too, and it didn't bring the manuals up-which is wierd because it should take you right to them. I will get with Birdbomb and see what the problem is and get back with you. If we can't get it resolved for you really quick, you can call Cyberonics and ask them to send you a manual. I know of one person on this board who got the manual before implant by calling them, but we will hopefully get it resolved for you before then.
I, and many others on the board (even those with epilepsy), understand your deep desire to get well. Please know that VNS is not a quick fix, and it is adjuctive therapy, meaning you will need to follow thru with counselling and meds as seen appropriate by your treating physicians. Some people have had positive response to VNS and been able to decrease meds, some have discontinued meds. Some people have had negative response to VNS-everyone is different. Your response to VNS may be totally different than others because we all respond differently.
Since you are at a really low point right now, maybe some extra intervention may be helpful for you so you can stay safe.
My good thoughts are being sent your way. :bigarmhug:
Dispatch B)
Birdbomb - August 13, 2008 12:59 AM (GMT)
I have no idea why the link isn't working for you unless your security settings are set high/cookies disabled/or fire wall not allowing it.
Bernard, any other ideas?
gel61820 - August 13, 2008 01:06 AM (GMT)
Try clicking here for Patient ManualTry clicking here for Physician's Manual page.Note: You will need Adobe Acrobat Reader to view and download these manuals. If you do not have it, you can download it off the first link shown above. I was able to open Birdbomb's link from the above message, but sometimes computers hiccup, so reposted for you.
Hope this helps out!
Hugs,
Cindy
Bonnie - August 16, 2008 01:06 PM (GMT)
Hello Jules & :Welcome: ,
Just read everything you can here. It is a very personal decision to have the VNS put in. I have depression and had a VNS put in last Oct. '07, I think it is making a big difference in my depression. My depression has been over 20+ years, and I'm disabled now and could no longer work or get any job out there.
I am only taking one anti-depressant and that's all, which is nice. In the past I have been on many drugs at the same time. Everyone here has given good advice, I cannot add much more. Read, read, and read everything you can on the VNS.
Sincerely,
Bonnie
Bernard - August 16, 2008 04:36 PM (GMT)
The manuals are Adobe Acrobat (.PDF) files. depending upon your browser settings, you can either view them in the browser (with a plug-in if you have security settings enabled) or download them as a file (again, assuming your security settings allow you to download files).
Mew2you - August 26, 2008 10:01 PM (GMT)
Still can't link to the manuals. I guess I'll have to call them and see if I can get a manual sent to me. I am currently living with ECT. That really helps but I can't extend the treatments. Fun fun! Thank you for all the advice. You guys are very sweet.
Jules
Dispatch - August 27, 2008 12:50 AM (GMT)
:D HI Jules!
Glad you visited us again.
I'm sorry you can't pull up the manuals here, that is wierd. It may be your computer settings not allowing you to do that. I think you can get on the Cyberonics VNS depression site and read the manuals there. Maybe calling them would be a good idea, too.
I am glad you are doing ok with ECT. I am anxious to hear what your future plans are and how you are doing. Please keep us updated.
Dispatch B)
EmptyLife - November 11, 2008 02:08 AM (GMT)
I am researching ECT, VNS and TMS (magnets) for TRD, too. I have been severely depressed almost all my life. I am facing suicide — there is simply no alternative to suffering without relief.
Unfortunately, from what I read on the boards, neither ECT nor VNS seems very effective. I would do them in a heartbeat if I thought they would help, but it seems very few have success for them.
Dispatch - November 11, 2008 02:58 PM (GMT)
HI EmptyLife and :Welcome: to the VNS Message Board! I am glad you joined us, and hope you keep visiting with us. We are here for you no matter what for support and guidance. We aren't Physicians and can not give medical advice, but we will do to the best of our abilities to offer suggestions and guidance that you can talk over with your Physician(s).
PLEASE don't think the alternative is suicide. When you are having these thoughts, please contact your Doctor and go to your local emergency facility to give yourself a break and get yourself in a different way of thinking. Your safety is important. There are alternatives that can help.
VNS has worked for some people. There are members right here on this board who I know will jump in and tell you their success with VNS. Some of us have had a rough go at it, had bad experiences with the manufacturer, etc., but there are some who have gotten some relief from their depression, and others who have had complete relief. Don't throw out all your options. Please read the maunuals, you can access them right here from the main page. Consider with your Physician(s) your medical history, and are you a proper candidate for VNS or any other medication, or device currently being used.
I understand completely the depths of depression as I myself have suffered with depression since I can remember being a child. I think VNS may have worked for me if my medical history did not hinder the process. I did get short term relief from the device, but again, it was my medical history that had been overlooked and problems with side effects & adverse events were spiraling out of control. I won't try and fool you that VNS is a magic cure. As with any form of treatment, it takes time.
Also, please understand that alot of people who have had success with devices or other forms of treatment just simply go on with life and don't share their experiences. So, with that in mind, alot of the stuff you read on message boards is negative because people are reaching out for help. All of us here wish we had more success stories participating so others would be able to read that this device may work for them.
I hope after reading this message to you, you'll find hope that there is some sort of treatment option that you will look into. Please contact your Physician(s) and talk about all treatment options. I can't offer any information about ECT or TMS, DBS (Deep Brain Stimulation), or Neurofeedback as I never had those, but those are options if you are a proper candidate, VNS (if you are a proper candidate), as well as talk therapy, medications, change of diet & exercise, change of environment such as home life or job, etc. From the little you wrote, I don't know your personal circumstances, but the suggestions I am offering are certainly worth pursuing information about and talking over with your Physician(s).
I don't have to be a Doctor to tell you to please be dilligent, persistant, hopeful, and give yourself positive affirmations that you are worth everything not just to those who care about you, but also to yourself. Gather all the information about all treatment options & talk to your Physician(s). Please stick with us. We are in it for the long haul with ya!
Dispatch B)
Birdbomb - November 11, 2008 05:25 PM (GMT)
Never give up hope.
Welcome :Welcome:
There is something that will work for you, you just haven't found it yet. please be patient and do more research.
I have sent a pm to Bernard. He has excellent information on neruofeedback and diets that work
Mew2you - November 11, 2008 07:31 PM (GMT)
Dear EmptyLife,
I wish I had something I could tell you that would make it all better. Just please know that you are not alone. The people here care and understand what you are going through.
labrat - November 11, 2008 11:21 PM (GMT)
I got the VNS for TRD October 19, 2005 and I am now depression free. It didn't happen over night, but it happened. I spiraled out just like I spiraled in. ECT........ the memory loss is too much to pay to have it. I had over 40 treatments and have a 30 year memory loss!
Don't give up!
gel61820 - November 12, 2008 04:19 AM (GMT)
Hi and Welcome to the Forum, Empty!
Please know that there are those that VNS has been very beneficial for, and yes those who it has not been. I am having mine removed this month due to it not working for my seizures but I do not regret trying VNS to see if it would give me relief.
There is always hope, my friend. Depression is such a terrible road (I have dealt with it and suicidal actions myself in the past) but it is something you can find relief from, but diligence is required. I know all too well how difficult it is to find the right help however it is out there for you!
Each and every one of us has or will have a time in our life where we may think that suicide is the best way to remove our problems. From someone who has been there, please seek treatment to deal with those thoughts. You are a valuable and cherished person on this earth and you do have a reason to be here!
I am putting here one of my favorite inspirational readings:
Desiderata.
Go placidly amid the noise and the haste,
and remember what peace there may be in silence.
As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly, and listen to others,
even to the dull and ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.
If you compare yourself with others,
you may become vain or bitter,
for always there will be
greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career
however humble;
it is a real possession in the
changing fortunes of time.
Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you
to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself.
Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.
Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit
to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore, be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.
With all its sham,
drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.
by Max Ehrmann
©1927 (renewed) Bell & Son Publishing, LLC
Reprinted with permission.
I underlined the passage which was most beneficial for me during my darkest of times. You are in my prayers and I hope to see you online soon.
Hugs,
Cindy
Bernard - November 12, 2008 02:55 PM (GMT)
Hi EmptyLife, there may be other options available to you yet to explore. Have a look:
EEG neurofeedback for depression
oreo - November 12, 2008 03:50 PM (GMT)
Dear EmptyLife,
I support the thoughts and suggestions made by all who have posted.
I wanted to let you know that depression/suicidal thinking have been a huge challenge for over 17 years. I made one serious attempt years ago...and though I'm so happy it was unsuccessful, it didn't keep the thoughts from returning.
At various times different treatments were of some help for short periods of time. Individual meds, multiple meds, therapy, ECT, life style changes and most recently (2 1/2 years ago) VNS.
ECT was helpful for short periods of time, but I mistakenly kept accepting that treatment option and have unfortunately lost huge chunks of long term memory and have some challenges with short term memory. Looking back, I would have tried to make better use of the short term benefit ECT provided to search for a long term treatment option and not gone on to have over 70 ECT treatments.
VNS has provided some significant benefits with some significant side effects. So far, the benefits are well worth putting up with the side effects.
If you thoroughly research VNS here, and don't find any conditions that would rule you out as a good candidate, you can consider it as an option. Others have posted other options.
One thing that helped me get thru the worst times was knowing there was something else to try. There was a two year period when there was nothing else to try and I saw my psychiatrist and/or my therapist 1-2 times each week to help carry me thru.
Our thoughts and prayers are with you...please stay connected with us and with anyone (health care professional, family, friend, neighbor) who will remind you daily of your value and of the promise of recovery.
Oreo
MissJennie - November 13, 2008 12:46 AM (GMT)
Hi EmptyLife,
Therapy is my way of coping. I have suffered from depression (bipolar) for most of my
life. ( I am almost 55)
I have had no luck with the antidepressants or the VNS.
I really think my therapist helps!! She is a nice, kind, caring, gentle lady.
My Shrink, is not my cup of tea! Ha! All he wants to do is write prescriptions.
I wish I had the nerve to tell him "write me a prescription for enough money to pay the bills, a stress free life, my son to be well, my grandchild to behave etc!"
I think some people cope with all that life deals them, better than other do.
(I don't handle stress well at all)
Take it one step at a time. Try not to look back. Be kind to yourself! You deserve it!
You are not alone, we are here for you!
I feel my life up, with caring for my son and grand child!! There isn't much left over
for me, but it keeps me going and keeps me from giving up.
EmptyLife - January 13, 2009 02:00 AM (GMT)
Thank you all for your kind messages.
I haven't been at the site for a while.
The neurofeedback was something I hadn't heard of, as is deep brain stimulation, so thank you for the input.
labrat - January 13, 2009 06:03 PM (GMT)
Dispatch - January 14, 2009 01:17 AM (GMT)
| QUOTE (EmptyLife @ Jan 12 2009, 08:00 PM) |
Thank you all for your kind messages. I haven't been at the site for a while. The neurofeedback was something I hadn't heard of, as is deep brain stimulation, so thank you for the input. |
:D HI EmtyLife!
Nice to hear from you again! I hope your new year started off good! Please keep checking in with us and let us know how you are!
You are more than welcome for the input! Please stick around so we know how you are!
Take great care!
B)
EmptyLife - January 19, 2009 02:50 AM (GMT)
well, i am so depressed, that i am going to have to initiate the process for starting a VNS consult. it's the only thing i have to try before my final suicide attempt. but i am not sanguine about the prospects. even the company website gives it only a one out of three success rate. the experiences on this board point overwhelmingly against success, with the exception of two or three people.
and no one bothers to research what kind of people are successful with it -- how they differ by activity level, anger, sadness, social activity level, alienation...
it's a total crap shoot, like ECT.
we think we're so advanced, yet i think we're in the Dark Ages as far as treating any of my medical problems.
life is an absolute nightmare, and always has been.
thanks for letting me vent. i'll start making calls to doctors tomorrow. or i guess tuesday because of the holiday.
adventurer06 - January 19, 2009 05:24 AM (GMT)
EmptyLife,
I am so sorry you are struggling with your depression right now. I know how it feels because I dealt with it for almost 20 years. I took dozens of medicines that either didn't work at all, or only worked temporarily. I decided to try VNS before ECT. I was implanted with the VNS for my depression on 8-14-06 and activated 2 weeks later.
At first my family noticed positive changes in my mood (even before I did) a few months into treatment. My depression went into full remission around 7 or 8 months after I had the device activated. I can't say I never have bad days (I do & everyone does) but I don't fall in the depths of horrible despair and hopelessness like I did when I was severely depressed.
Prior to the VNS, I tried to committ suicide multiple times, and was admitted to various psych hospitals 18 times, starting when I was just 12 years old. I am so happy now that I didn't succeed. The VNS may or may not help you, I know for a fact it has helped some (and also know several other people from another website it has helped too),but there really are no guarantees with anything in life. Its a decision only you can make for yourself.
I know things seem so very very black to you right now, but please don't give up, don't let this horrible illness win. Also, sometimes it is a good idea to go to the hospital and at least get a break and have supportive people to talk too if you are so depressed you consider suicide.I am so glad you found this website, it really is an awsome place with awesome caring people.
Mary
labrat - January 19, 2009 05:53 PM (GMT)
Emptylife,
I had TRD for 11 years before I got the VNS. I had nothing left. I feel that for TRD the VNS works for the worst of the worst in depression. I've had my VNS since October 19, 2005. As my aviatar says VNS saved my life.
Most people come to this site to complain about the VNS. People that have had good results go on their merry way. I am the exception.
If it is your last hope GIVE IT A TRY. It takes time for it to work. You will spiral out just as you spiraled into depression. Mine was so bad that it took a year to work completely. I was getting better along the way.
Let us hear from you, we care! :rolleyes:
EmptyLife - January 19, 2009 06:27 PM (GMT)
I agree that this site is more likely to have dissenters. If the VNS is successful, why waste time on a message board?
But I am also skeptical of the results on the company website.
Anyhow, I did leave messages with two doctors, so I will get the ball rolling.
Thanks for your support.
I am concerned that my depression is too wrapped up in my personality somehow, and that nothing will help. That's the original reason they wouldn't medicate me. What if my personality is just too traumatized, and nothing physical can reprogram it?
Did the doctors explain why it takes so long to work?
Dispatch - January 19, 2009 11:20 PM (GMT)
:D HI EmptyLife!
I can definately read the pain you are experiencing by what your posts say. I can relate, and I want you to know I am so glad you've been back to update us. We are here for you and will do our best to answer your questions and direct you to who can answer your questions if we can't.
As posted above, these 2 people have had success with VNS and there is no telling why it may take so long to work. That is a question that no one even doctors or the manufacturer can answer. Everyone responds differently to any form of treatment. Another member (Oreo) has also had success although she has experienced undesireable side effects. She has weighed the benefit versus the side effects, and the benefit has been greater for her. I think VNS may have been successful for me had my medical history and current condition not hindered the process. If you are unsure about VNS, please look into other treatment options such as Neurofeedback. There is also deep brain stimulation and rTMS for depression. I have no experience with any of those, so please research these options and talk to your doctor. Please don't give up hope. You are worth every attempt to help yourself and allow others to help you.
As far as personality goes, my opinion is once you are able to get out of such a deep depression, you will see a whole new you, a whole new world, and it will promote a positive personality change. I have learned in my years of depression that if I love me and who I see in the mirror, my personality shines thru. This does not mean I don't have bad days and I don't get my down moments. I am not invincible or immortal, and it is almost impossible to have everything perfect all the time. BUT, depression destroys and I totally understand what you are feeling. I really encourage you to please give yourself the chance to look into all your options for treatment including VNS.
I will be the first to admit when I was feeling great, I was so busy going on with life and being productive, etc., that I had no time for learning how to use the internet let alone a message board. When I took my big crash & burn with VNS, I convinced myself to reach out to others for help and guidance with what I was enduring. Amazingly, I learned how to use search and found this board. I have had incredible challenges over my VNS days and not being on any meds to deal with my depression. Reaching out to the members of this board was a big step for me and here I am today and dealing pretty good with depression-better than I ever have in the past. I will say this board has given me a new chance and a positive way to deal with my depression. The support I have received and been given the chance to provide for others has really helped me in a remarkable way. You made a great step in reaching out to us and I applaud you. Don't give up hope. You are worth every opportunity to get well.
I look forward to visiting with you again. Take good care!
B)
***EDITED BY DISPATCH to add now that you have read some of the side effects of VNS Therapy, you have an idea what can happen. That doesn't mean it will happen to you, everyone is different. If you do decide to have VNS and you have undesireable effects, you will know to have them turn the device off and see if you get better. With any treatment option, always question if your medical history or current medical conditions will hinder your improvement.***
labrat - January 20, 2009 05:17 PM (GMT)
Nice to see you back! Keep us posted on how you are doing.
EmptyLife - January 20, 2009 10:44 PM (GMT)
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There is also deep brain stimulation and rTMS for depression.
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those are only available in clinical studies. i have asked to be put on the TMS list, but I have not heard anything, and i am not aware of any deep brain stimulation list.
i haven't met anyone who can identify with my lifelong depression.
oreo - January 21, 2009 01:25 AM (GMT)
Hi EmptyLife,
Dispatch told you about me...some really good benefits...several crummy permanent side effects. The good far outweighs the bad.
I am sad for you that you've been suffering with this since you were just a kid. My depression didn't get severe enough until I was in my late 30's to even be diagnosed. Unfortunately, once I started decompensating...I just went down the tubes into suicidal thinking 24/7 for years.
I tried everything - meds, multiple meds, off label meds, over 75 ECT treatments, an 8 month inpatient stay at the National Institute of Health, and counseling 1-2 times a week just to keep me alive for years.
I had asked my husband and children several times to "give me permission" to end my life - I told them I knew I would finally be at peace and that then they could grieve and heal. I felt like I was ruining their lives.
It is possible to come back from Hell, even after being there for years. Life now includes interest, pleasure, joy...concepts that were not present in depression.
Like Dispatch, I still have some ups & downs...there are occasional scary "drops"; but my head tells me this is temporary and the few I've had have not lasted longer than a day.
A few thoughts - the manual does not find a patient a suitable candidate if they are presently suicidal....so, although I'm sure there are docs who will go forward...it's not in your best interest to start the process in that state. If you are obsessed with suicide, and have a plan, etc. - you need to be admitted and "buffed up". VNS is no quick fix...although a few patients experience slight benefits within weeks...for most it is months even up to 2 years before significant benefits are felt.
Also, when I was an inpatient at NIH, one of the treatments they were testing was the rTMS. It was not part of my protocol, but I lived with patients who received it. None of them derived permanent benefit. Of course they've been testing it now for over ten years, and perhaps they have "tweeked" things and may be getting better results.
I know when people told me to hang in there when I was in Hell, it just didn't mean anything to me. I guess I did have a very tiny inner voice of hope that kept me hanging on until the VNS became available. I think you must have something like that....you are still searching and that means something!
I still take very low doses of several meds. One that made a difference for me years ago...and was added again and is really helpful is Ultram (tramadol). It's an off label use. Some docs won't use it because it has some potential for addiction. But I started with 50 mg. a day, was increased to 100, then 150 mg. I've stayed at that level for six months. The maximum daily dose is 400 mg. - so I am far below that.
There's a lot of anecdotal info about it online...if you're interested, do some research - show your doc the info you get and see if this may be a possibility for you.
My thoughts are with you! Oreo