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Unbearable

Unbearable, Intractable Lifelong Depression

18 posts in this topic

Posted (edited)

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I have had unrelenting depression for the past 30-35 years. I do not have episodes; I am chronically incapable of enjoying anything. I have tried 40+ medications and decades of therapy. I cannot have ECT or DBS due to medical reasons, and VNS is not covered by my insurance.

What is most frustrating to me is that I cannot find anyone on the Web or any book in the library that suffers similarly. I am not saying my problems are worse than anyone else's. I simply cannot find anyone that I can feel empathizes with my persistent, pervasive anhedonia. At this point, I would simply like to find people on the Web that can understand what torture every minute of every day is. Where are they? One therapist suggested people in my situation aren't even on the Internet.

Edited by Unbearable

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Posted

We do have members with treatment resistent depression. Your tdoc is probably right about many not being on the Internet, especially if their depression is severe enough to totally disable them physically and mentally. You have been able to cope with your chronic depression and not let it defeat you. It is something that takes incredible inner strength.

VNS is still considered experimental by a majority of US insurance companies and won't pay for it. It also has mixed results with depression as does other treatments. You may be able to get a grant or find a neurosurgeon who will provide pro bono surgery. From what I've read, the device itself is around $7,000. The manufacturer may have a special program, like pharmaceutical companies do, to help low income people, It's worth a shot to look around for obtaining VNS help.

Sheepwoman

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Posted

I am here and I understand. How agonizing every moment can be and how persistent the disharmony is. Although I do not have constant depression, (I'm bipolar) my depressive states outlive my manic states and I've been that way most of my life. What was most devastating for me was lack of motivation to pursue any treatment or activity that could help. I found meds that worked somewhat for me, and I'm sorry that medicine gave no relief to you. We are here for support and though I cannot fully relate to the failure of treatment, I understand.

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Posted

Hi Unbearable:

I'm so sorry to hear that your experience with depression has been so intractable. It must be so hard to experience such daily suffering alone. I wish I had better words for you or knew who to connect you with who might share your experience.

I also wish for you some treatment hope. Clearly, you have tried so many things and know the range of possibilities.

I concur with Sheepwoman, your inner strength is incredible (even if it doesn't feel so).

Tim

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Posted

I feel the same way

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Posted

((((((((((((((((((Unbearable)))))))))

I DO know how you feel. I had unbearable depression and horrible anxiety for almost a year. For many years before that I had depression, just not as badly as last year, due to a string of stressful events. I am better now, but when I was in the worst of it, it was torture. I managed to keep my job during that time, which was a miracle. People who have never had depression can't really relate...I heard several people, even friends, who would say to me "just get over it". It was so painful to go through. I really do hope you can get some help, and I pray that it will be soon for you.

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Posted

You sound like a good candidate for ECT. If you don't mind sharing, why can't you have it?

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Posted

Hi Unbearable:

Just checking in to say "hello" today and hoping that some light, however small, has come your way today.

tim

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Posted

my medical problems are none of your business. but if you say i'm a good candidate for ECT, you obviously haven't done any research. The poorest outcomes for ECT are for lifelong depression. I have researched ECT extensively--as much as one can, as the FDA doesn't even require doctors to report that it's been done.

VNS has only a 20% success rate, from what I've been told. I can't find good data on the Internet. I do not have the energy to research VNS grants, if they exist. The one link someone gave me turned out to be false.

Tim52, thank you for your kind wishes.

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Posted

my medical problems are none of your business. but if you say i'm a good candidate for ECT, you obviously haven't done any research. The poorest outcomes for ECT are for lifelong depression. I have researched ECT extensively--as much as one can, as the FDA doesn't even require doctors to report that it's been done.

VNS has only a 20% success rate, from what I've been told. I can't find good data on the Internet. I do not have the energy to research VNS grants, if they exist. The one link someone gave me turned out to be false.

Tim52, thank you for your kind wishes.

Didn't mean to offend you, just trying to offer you alternatives and be supportive. I've had 12 ECT treatments and it helped significantly for me. However my depression has returned so I'm planning on more ECT this month. Kitty Dukakis regularly gets ECT treatments because it's the only thing that works for her depression. Unfortunately I think I'm falling into this category too and will probably need life-long treatments since meds don't work for me.

I do hope you can find some relief. I too looked at VNS and was very discouraged by both the low success rate and lack of insurance converage.

Take care and don't give up. We're here to support you.

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Posted (edited)

I'm sorry your depression has returned. I'm glad ECT has worked for you. I hope it continues to.

You might want to research the least damaging type, right unilateral ultra-brief ECT, if you have not already.

I have read Dukakis's book a long time ago. As I recall, Dukakis didn't get depressed until her 20s, and her depression seems very cyclical -- every 9 months.

I, on the other hand, have depression that started much younger.

I have also put in a request at the library for another book, one by a Rolling Stone editor who had ECT and who was irreparably damaged by it.

One problem is there is no correlation between outcome of ECT and types of depression. There is little data on ECT and my medical problems. What data I have is very disturbing.

And doctors simply do not do their research and do not care. I had an argument with the chief of a local hospital's psychiatric unit. He said he was certified to do ECT -- though he did not do it -- and he claimed the unilateral ultra-brief was done on the left side. He got very mad at me when I said it was done on the right hemisphere. He ended up escorting me into the crowded lobby and yelling, "You need ECT! I will see you after the ECT!"

Another local doctor who does practice ECT said he didn't do the ultra-brief because he had been to a conference and there was no proof it was better. But, that's not the point. If it's just as efficacious and less harmful, then wouldn't you go for the less harmful?

I find these doctors' ignorance very disturbing.

ECT is still an option, since I obviously can't get up the guts to **** myself. But I don't understand how ECT would help me start to love a world that I hate.

Edited by Unbearable

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Posted

My God what a horrible experience for you! I'm so sorry. Yes, you're correct about Kitty and her cyclical depression. I can completely understand why you feel the way you do about ECT.

This ECT time for me, I'm going to request the unilateral treatment if it's offered. I did suffer memory problems last time so there's no doubt there's a price to pay. I've heard the horror stories about people forgetting their kids, marriage, etc...

I agree that ECT isn't the controlled policed procedure like it ought to be. There should be tons of research and records kept like with some of the other meds. I too had a very arrogant ECT doctor that thought he knew everything. I'm never going back to him. It does seem more black arts than science.

I'm sorry your depression has never lifted for you. I can't imagine what that's like. I've had about 5 major episodes, my current one lasting two years. But at least I can try to remember what it felt like to not be depressed. You don't even have that.

You'll be in my prayers. Maybe someday they'll invent a new treatment that can give you some relief.

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Posted

I understand your depression and empathize. You would be surprised that most of us feel that discontent most of our lives--ebbing and flowing..If you could see behind the smiles and faces that pass you by, you might not feel so alone...I take effexor and don't know if it does much for me but tone down the anger in my head. It makes me sluggish and I never exercise anymore.....I still feel depressed a lot too...I lost my mom last year and can't seem to move on. In the meantime, I eat chocolate, play chacarron on utube (so bad it's funny), pet all my animals, watch funny shows, enjoy seafood once in a while, try my damndest. I hope you realize you are not alone in your feelings...I don't enjoy a lot but I'm trying and you can be ok. A soft, beautiful pet helps too. Hang in there. Jenny

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Posted (edited)

Unbearable,

I happened upon your forum post while researching the web

for other information.

Very quickly by way of background I am a very, very

long-time support person and health care advocate to my spouse of more than 4

decades and reasonably educated in terms of MDD (Major Depressive Disorder). I was also a former DBSA board member,

president and facilitator. By way of training I try never to give advice but rather

share experiences and knowledge garnered through my research and collaborations

through the years.

I am very familiar with VNS Therapy for MDD but as someone

previously mentioned while the therapy is FDA approved CMS (Centers for

Medicare and Medicaid Services) ruled they would not pay and in turn the health

insurance industry followed suit although one might battle the insurance

companies as the ruling has been overturned in a number of instances. But it is a lengthy battle and understandably

difficult for someone who is well let alone suffering from depression.

The other point I would make is the fact and I'm sure you

and others know well by now there are no guarantees of efficacy from most all

these treatments and worse yet are the potential serious side-effects one might

encounter.

You ruled out ECT and DBS so I won't address these subjects

other than to point out to you and the readers there are 3 options for ECT to

my knowledge; right unilateral, bi-frontal and bilateral. The least potential for cognitive or memory

side-effects being RUL and most being that of bilateral.

You did mention VNS having a "20% success rate". I on the other hand refer to these

percentages as responders. Success is a

term open for discussion. There is current

long-term data indicating the response rate was higher but even more interesting

to me was the longer-term response and remission rates not normally seen from

medications.

I noted your mentioning difficulty researching grants. I would suggest calling directly to

Cyberonics at (800) 332-1375 to see if anyone in the company could lend a hand and/or

provide more up-to-date information.

I noted no one mentioned another recently FDA approved neuro-modulation

therapy, TMS (Transcranial Magnetic Stimulation). While it has been FDA approved it has not yet

crossed CMS for their okay which means one may have to pay out of pocket and it

is a costly therapy. I would also point

out that there are often studies being run on these various therapies

throughout the country as a possible means to obtain the therapy at no cost as

a research study subject. I've listed a link below

to the clinical trials. Enter the word "Anhedonia"

or "depression" or anything that suits you and you'll come up with the various

trials being offered:

http://www.clinicaltrials.gov/ct2/search

One patient friend who I've collaborated with for a number

of years suffered from Dysthymia which can be a kissing cousin to Anhedonia and

he opted for VNS. VNS did not achieve

for him the response or remission he sought.

He then went ahead after our further discussions and tried TMS or what

is referred to as rTMS at the University of Pennsylvania under Dr. Charles O'Reardon. From our discussions my patient friend has

done considerably better with the TMS treatment.

Other potential therapies not mentioned in this topic are tDCS

(Transcranial Direct Current Stimulation) and MST (Magnetic Seizure Therapy). I shall also presume over these many years you've

also tested for and evaluated your thyroid and testosterone levels.

After some 36 years and a number of suicide attempts my

spouse was one of the earliest study subjects for VNS Therapy for Depression

and has done reasonably well and has been almost continuously depression free

these past 10 years.

From my vantage point all that I can do is endorse others to

educate themselves as to the numerous therapies available and in collaboration

with one's trusted, caring, knowledgeable and licensed health care professional(s)

to make un-coerced medical decisions while I also encourage hope and

persistence.

I wish all those reading my thoughts good luck and most

importantly, wellness.

Edited by Lifetime

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Posted

Awesome post, Lifetime. Thank you! It's great to hear that your wife responded to the VNS. Thank you for the excellent detailed information on the alternatives. I plan on having my spouse read your post because she's been so frustrated by my depression over the years. The clinic I'm going to for ECT also does VNS.

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Posted (edited)

Herb,

Thank you for all your recommendations. I certainly appreciate them, rather than the very condescending -- and totally incorrect, in more ways than one -- "I understand your depression and empathize. You would be surprised that most of us feel that discontent most of our lives--ebbing and flowing." If I were mentally healthy, I could brush things like that off. Unfortunately, I can't.

I will reiterate: Every time I look up clinical studies, I cannot participate. I did it again, entering your suggested "anhedonia." I have MS, and I do not qualify. If I did, I would go straight for DBS.

I also have terrible tinnitus, which is a horrendous ailment that no one seems to care about. I've read of five cases in which ECT made it worse. But, of course, no one studies it because it is unregulated and no one cares.

I also already have severe memory problems. I cannot risk worse ones. I would have to be in a nursing home.

VNS is very tricky, has a low success rate, and is not covered by insurance. In addition, I have a neck injury with years of pain that only recently subsided that I am worried would be exacerbated by the implant. Plus, I could no longer have MRIs for my neurological disease. It is all very upsetting.

I contacted the Cyberonics number. Thanks. I would have to find a surgeon and hospital to donate their services for free, then have my psychiatrist apply to have the device for free. My guess is they would take all my savings, which is all I have to live on. For a device of dubious success, the risks are enormous, and trying to find a dr. and hospital donating services? To someone who is not on welfare?

TMS is very expensive and not covered by insurance. I cannot find anything good on DBS, VNS or TMS success rates, frankly. Even the DBS, which seemed miraculous when it came out, has proven to have less than sanguine results. Why isn't there better data available? You notice that the success stories on the VNS site are now several years old.

I find that suspicious. Do you know where I can find more solid results for these devices?

Thanks for your post and your help.

I am reading Jonathan Cott's book, On the Sea of Memory. Cott had ECT in 1999, and it both wiped out much of his long-term memory and dramatically impaired his short-term memory and cognitive skills. People might want to balance his experience with Kitty Dukakis's. He decided to use the experience to write a book on memory.

So, the results with ECT can be both excellent and devastating. What bothers me is that it is unregulated, so no one can do studies making correlations between symptoms and success rates.

Edited by Unbearable

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Posted

I have had unrelenting depression for the past 30-35 years. I do not have episodes; I am chronically incapable of enjoying anything. I have tried 40+ medications and decades of therapy. I cannot have ECT or DBS due to medical reasons, and VNS is not covered by my insurance.

What is most frustrating to me is that I cannot find anyone on the Web or any book in the library that suffers similarly. I am not saying my problems are worse than anyone else's. I simply cannot find anyone that I can feel empathizes with my persistent, pervasive anhedonia. At this point, I would simply like to find people on the Web that can understand what torture every minute of every day is. Where are they? One therapist suggested people in my situation aren't even on the Internet.

[/quot

If you still feel isolated, write back to me. There is no easy answer and there is no therapy that does not have consequences. I am facing similar decisions after a long journey. I am very tired, but every morning I put my feet on the floor and walk -- one foot after the other. One day will be a better day. Joe "I get by with a little help from my friends" -- sometimes.

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Posted

Hi Unbearable

You may want to have a look in Posting, Asking and Sharing, there are various topics in there on DBS, VNS, TMS and the likes.

Trace

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