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Dr. Bob is Robert Hsiung, MD,
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Posted by Hugh on February 21, 2014, at 18:53:06
In reply to TMS evaluation/ 40 years of meds 4 nonresp dep, posted by stargazer2 on February 19, 2014, at 19:56:32
Is this the clinical trial at Yale you were considering? If so, is it LFMS instead of TMS?
Posted by stargazer2 on February 22, 2014, at 12:36:44
In reply to Re: TMS evaluation/ 40 years of meds 4 nonresp dep, posted by Hugh on February 21, 2014, at 18:53:06
What is LFMS? It is the Neurostar TMS therapy.
How do I find out if it is the deep one?Yale backed out of the study or I was told it was being put on Hold, so I found a MD office that uses the Neurostar TMS therapy, not sure if deep or I believe it is Left frontal.
Besides the cost 12K I am nervous about lack of response since nothing has worked even ECT, which is considered the gold standard although I never have believed that as my experience with ECT made me worse with memory loss and confusion.
Who has had the Neuro star TMS therapy and with what results?
Please give me reasssurance that this is the right thing to do since I believe I have no other options. Thanks.
SG
Posted by Hugh on February 23, 2014, at 17:49:14
In reply to Re: TMS evaluation/ 40 years of meds 4 nonresp dep, posted by stargazer2 on February 22, 2014, at 12:36:44
> Please give me reasssurance that this is the right thing to do since I believe I have no other options. Thanks.
I'd suggest that you read the Psycho-Babble posts about TMS by Twinleaf and Zatar and Brynb. Twinleaf and Zatar responded quite well to TMS, and Bryn responded quite well initially, but the positive benefits she received soon faded. Neurostar TMS was approved by the FDA in 2006, I believe. Brainsway's Deep TMS was just approved by the FDA a year ago. Neurostar TMS penetrates 1.5 cm into the brain. Deep TMS penetrates 6 or 7 cm. Neurostar sessions usually go on for at least four weeks. Deep TMS is initially used for two weeks.
I know that you've tried many antidepressants and ECT, but please don't feel that TMS is your last option. Ketamine infusions are showing great promise as a treatment for depression. Brynb received these in Manhattan from Edward Fruitman, MD. I believe he charges $250 per session. He also has an office on Long Island.
http://psychiatristdowntownny.com/Welcome.html
Neurofeedback has helped some people with depression who hadn't responded to medication or ECT. I know you're somewhere in New England. Laurence Hirshberg is a leading neurofeedback clinician, and he has offices in Providence and Cambridge.
http://neurodevelopmentcenter.com
Rae Tattenbaum is a prominent neurofeedback clinician in West Hartford.
LFMS (Low Field Magnetic Stimulation) is the depression treatment that Yale is studying. Harvard is organizing the study at McLean Hospital. Here's an article about it, where it's called EP-MRSI:
http://www.news.harvard.edu/gazette/2004/01.22/01-depression.html
Posted by johnLA on February 23, 2014, at 22:24:54
In reply to Re: TMS evaluation/ 40 years of meds 4 nonresp dep » stargazer2, posted by Hugh on February 23, 2014, at 17:49:14
god bless you hugh
Posted by Hugh on February 25, 2014, at 18:08:10
In reply to hugh » Hugh, posted by johnLA on February 23, 2014, at 22:24:54
Thanks, John. I hope you're doing better.
Posted by Hugh on March 3, 2014, at 13:44:33
In reply to Re: TMS evaluation/ 40 years of meds 4 nonresp dep, posted by stargazer2 on February 22, 2014, at 12:36:44
They've just started using Deep TMS at Mclean Hospital.
Posted by Twinleaf on March 3, 2014, at 16:42:31
In reply to Re: TMS evaluation/ 40 years of meds 4 nonresp dep » stargazer2, posted by Hugh on March 3, 2014, at 13:44:33
Very interesting and encouraging! I hope many centers do the same.
Posted by stargazer2 on March 9, 2014, at 19:07:39
In reply to Deep TMS at Harvard/McLean, posted by Twinleaf on March 3, 2014, at 16:42:31
I need to know if TMS has a good chance of working
as the cost is 12K and I have exhausted most other treatments.
Posted by SLS on March 18, 2014, at 20:44:31
In reply to Would you do TMS? Who has had success?, posted by stargazer2 on March 9, 2014, at 19:07:39
> I need to know if TMS has a good chance of working
> as the cost is 12K and I have exhausted most other treatments.I don't think anyone feels comfortable speculating in order to answer your question. I certainly would not want to talk you out of choosing a treatment that would give you your life back. I also don't want to convince you to throw away 12K.
I still have rTMS and deep TMS on my list of possible treatments. However, I am waiting to see how people respond to Brintellix (vortioxetine) before making a decision on what to do next. This drug is different enough from other antidepressants such that I feel it is worth considering.
- Scott
Posted by stargazer2 on March 18, 2014, at 22:28:15
In reply to Re: Would you do TMS? Who has had success? » stargazer2, posted by SLS on March 18, 2014, at 20:44:31
I thought I would hear from those who have had the TMS treatment. I guess not too many have from the lack of responses. I would rather try something like this than stay on the med merry go round which has had limited success for over 30 years. I have no other alternatives or at least that is my impression of what else there is to try.
Thanks Scott for at least responding. It's nice to know I am not alone on th planet 'Depression'.
Posted by SLS on March 19, 2014, at 7:27:42
In reply to Re: Would you do TMS? Who has had success?, posted by stargazer2 on March 18, 2014, at 22:28:15
> I thought I would hear from those who have had the TMS treatment. I guess not too many have from the lack of responses. I would rather try something like this than stay on the med merry go round which has had limited success for over 30 years. I have no other alternatives or at least that is my impression of what else there is to try.
>
> Thanks Scott for at least responding. It's nice to know I am not alone on th planet 'Depression'.You are not alone. Not at all. It's hard to account for why someone's post should not garner a reply. It happens to me all of the time. It can be upsetting.
I am considering going for either the original Neurostar rTMS or the newer Brainsway deep TMS. As I get closer to making a decision, I will try to consult with a few experts in the field. I intend to remain on medication.
- Scott
Posted by stargazer2 on March 19, 2014, at 23:41:29
In reply to Re: Would you do TMS? Who has had success? » stargazer2, posted by SLS on March 19, 2014, at 7:27:42
Thanks for responding.
I have started the "shallow"as opposed to the newly defined "deep" rTMS and am in the second week. No change in my mood so far. My rating on the depression scale is 27 out of 27 so I have a long way to go to get in the single digits. I'm still on Latuda 60, Nardil 15 (restarted just a few days ago due to increase in SI) and Lithium 300.
My doc called tonight to say he reviewed my records(20+ years, right?)and sees that I did best on Celexa, Wellbutrin and Adderall back in 2000. I had told him that multiple times in the last 10 years and he didn't say much about it and since then I have been on the merry go round. He thinks maybe we should try that combo again.
Scott, BTW do you live in New England? I thought I may have seem that somewhere. I'm in CT. Thanks for all the input of your posts if I'm able to understand them, many times my brain is too distracted/unfocused to read much of anything.
SG
Posted by stargazer2 on March 22, 2014, at 22:49:56
In reply to Re: Would you do TMS? Who has had success?, posted by stargazer2 on March 19, 2014, at 23:41:29
No time to wait for others to give me their opinion on TMS. It is my last resort so I have started it and have already had 10 treatments so far. Too early to say what it is doing but I am somewhat optimistic. I spoke with the author of the book "3,000 Pulses" Martha Rhodes who had TMS 3 years ago and is now a TMS advcoate. She has offered to support me eotionally during my course of TMS (6 weeks)and help me appeal the expected denial by my insuror, Medicare Advantage under Connecticare. Anthem is covering it without question as are many other insurors, so why some approve and some deny should not legitimately be a reason to deny.
Posted by babbler20 on March 25, 2014, at 17:53:51
In reply to Re: Would you do TMS? Doing it anyway, posted by stargazer2 on March 22, 2014, at 22:49:56
Hi, I've done 6 treatments of TMS so f*rt without any benefit. I'll keep you posted on my status. Where are you at with your treatment?
Posted by stargazer2 on March 26, 2014, at 14:03:07
In reply to Re: Would you do TMS? Doing it anyway, posted by babbler20 on March 25, 2014, at 17:53:51
Babbler,
Just had my #13 treatment today. I really don't notice anything either. One woman, the author of the book " 3,000 Pulses" said it wasn't until the 19th treatment that she started to see things in a lighter way. It seems as though most everyone in the office I go to improved to some degree.Are you in a desparate situation like I feel I am, i.e. suicidal? Is your treatment being covered by insurance. Mine isn't and I will appeal the denial but it still is nerve racking to have to put out that much money. I continue to have hope for improvement although after 2 weeks it still seems like an eternity waiting for something to happen.
P.S. We can babblemail if you would like at sometime. I think it would help to have another person going through this to be able to connect
with. It is such an isolating illness.Stargazer
Posted by SLS on March 26, 2014, at 14:41:10
In reply to Re: Would you do TMS? Doing it anyway, posted by stargazer2 on March 26, 2014, at 14:03:07
> It is such an isolating illness.
That's a perfect description.
Do you feel any less isolated when you connect with people on Psycho-Babble?
- Scott
Posted by stargazer2 on March 26, 2014, at 14:45:50
In reply to Re: Would you do TMS? Doing it anyway » stargazer2, posted by SLS on March 26, 2014, at 14:41:10
Yes, I suppose I do in some way. I still wish sometimes I could meet others who I have connected with and with whom I feel knowing them would help me better deal with this illness. I think if I could talk on the phone with a few other posters going through similar situations would be beneficial with my feeling so alone.
How about you? How do you deal with feeling so alone with an illness so many say they have but I know they don't exactly know what I'm dealing with.
Stargazer
Posted by babbler20 on March 26, 2014, at 18:08:15
In reply to Re: Would you do TMS? Doing it anyway, posted by stargazer2 on March 26, 2014, at 14:03:07
> Babbler,
> Just had my #13 treatment today. I really don't notice anything either. One woman, the author of the book " 3,000 Pulses" said it wasn't until the 19th treatment that she started to see things in a lighter way. It seems as though most everyone in the office I go to improved to some degree.
>
> Are you in a desparate situation like I feel I am, i.e. suicidal? Is your treatment being covered by insurance. Mine isn't and I will appeal the denial but it still is nerve racking to have to put out that much money. I continue to have hope for improvement although after 2 weeks it still seems like an eternity waiting for something to happen.
>
> P.S. We can babblemail if you would like at sometime. I think it would help to have another person going through this to be able to connect
> with. It is such an isolating illness.
>
> Stargazer
>
>Hi Stargazer,
Most of the studies I read about say that it takes 4 to 6 weeks to work, so It's not unusual that we haven't experienced improvement yet. I'm in a pretty desperate situation as well. I was laid off from work about 6 months ago, and due to the sleep deprivation, depression, and anxiety I've been experiencing, I have been unable to find another job. I've been suicidal since I was 8, so I'm not as concerned about it as I once was. Suicidal thoughts are just a part of life for me and I've learned to accept them. How long have you been depressed for? Do you have bipolar or unipolar depression. Do you have major insomnia problems as well. If TMS just helps my insomnia, I'll be glad I went through the process. At a bare minimum, I need to sleep more than 5 hours a night to function. I have Blue Shield Of California Platinum PPO insurance and they do cover it. There is another form of TMS called Deep TMS that is supposed to be much more effective than the Neurostar TMS we are getting. Hopefully, our insurance companies will eventually cover Deep TMS and we can get that done if this doesn't work. Have you had any success with SSRI's? I've tried all of them as well as a few tricyclics and I haven't had any relief. The only drug that helped me was Parnate, but it really started to wear me down after a year on it, so I had to stop. I'll keep you updated on my progress and best of luck to you over the next couple weeks.
Posted by SLS on March 26, 2014, at 18:13:26
In reply to Re: Would you do TMS? Doing it anyway, posted by stargazer2 on March 26, 2014, at 14:45:50
> How about you? How do you deal with feeling so alone with an illness so many say they have but I know they don't exactly know what I'm dealing with.
I don't know.
Survival instinct?
I held on to hope that I would one day be treated successfully.
I truly believe that life is worth living when one is not imprisoned and suffocated by a crushing depression. I decided to take the gamble. I have gambled that my illness would be cured or brought into remission soon enough so that I could enjoy life in my remaining years. My remaining years are passing by all too quickly. Perhaps I have already lost the bet? I don't know.
I lived through my 30s in solitude. The only people I spoke to were my parents. No friends. No enemies. I was very fortunate that my parents believed that my illness was neurobiological, so I didn't have to be completely alone in life. My suffering was acknowledged, even if it wasn't well understood.
I take 7 drugs. I am perhaps 35% improved. It is worth it. I am improved enough to venture out of the house and maintain a few relationships. Still, I am reliant on hope to choose life over death. This is made easier by my being improved enough not to be plagued by neurobiological suicidal states.
- Scott
Posted by Dr. Bob on March 27, 2014, at 3:31:07
In reply to Re: Would you do TMS? Doing it anyway, posted by stargazer2 on March 26, 2014, at 14:45:50
> I still wish sometimes I could meet others who I have connected with and with whom I feel knowing them would help me better deal with this illness.
In case you haven't been to Social lately, Babblers might be meeting at various times in various places:
http://www.dr-bob.org/babble/social/20140129/msgs/1061912.html
Bob
Posted by stargazer2 on March 31, 2014, at 18:09:55
In reply to Re: Would you do TMS? Doing it anyway » stargazer2, posted by SLS on March 26, 2014, at 18:13:26
SLS< I guess you are lucky to want to still live...that thought becomes farther and farther away the longer I am plagued with this illness. You can't explain something you don't even understand to those who do not suffer from it. They simply look at you and the confusion in their eyes tells the whole story .
My family are the least to try and understand or offer me any hope..they simply do not get it.
I am so alone. I welcome death everyday. I wish there was a way I could fulfill that wish to die especially as I do not see any improvement with TMS.
SG
Posted by SLS on March 31, 2014, at 21:25:11
In reply to Re: Would you do TMS? SLS, posted by stargazer2 on March 31, 2014, at 18:09:55
> SLS< I guess you are lucky to want to still live...
I guess I was blessed with optimism and resilience. Still, every man has his limits and breaking points.
I'm glad that you continue to connect with people by posting here. I think you will find support, understanding, and draw positive energy from others.
- Scott
Posted by babbler20 on April 3, 2014, at 20:36:31
In reply to Re: Would you do TMS? SLS, posted by stargazer2 on March 31, 2014, at 18:09:55
> SLS< I guess you are lucky to want to still live...that thought becomes farther and farther away the longer I am plagued with this illness. You can't explain something you don't even understand to those who do not suffer from it. They simply look at you and the confusion in their eyes tells the whole story .
>
> My family are the least to try and understand or offer me any hope..they simply do not get it.
>
> I am so alone. I welcome death everyday. I wish there was a way I could fulfill that wish to die especially as I do not see any improvement with TMS.
>
> SGHi, my family doesn't get it at all either. My mom is convinced that I can just think my way out of it and my father says things like "go for a walk around the block and you will feel better" and "Take a nice,hot shower." Are you noticing any improvement yet? Talk to you soon.
Posted by stargazer2 on April 3, 2014, at 21:17:12
In reply to Re: Would you do TMS? SLS, posted by babbler20 on April 3, 2014, at 20:36:31
At least someone talks to you that tries to understand even thou to you they are clueless. I wish severe depression, not the garden variety type, was everyone's affliction. Then they would get it. It has to be impacting their life to get it. Its as selfish as that
Posted by babbler20 on April 4, 2014, at 23:00:34
In reply to Re: Would you do TMS? babbler20, posted by stargazer2 on April 3, 2014, at 21:17:12
> At least someone talks to you that tries to understand even thou to you they are clueless. I wish severe depression, not the garden variety type, was everyone's affliction. Then they would get it. It has to be impacting their life to get it. Its as selfish as that
I agree with you. I'm 3 weeks into TMS and so far I haven't experienced any relief. How about you?
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