![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 10 to 34 of 37. Go back in thread:
Posted by katekite on July 31, 2002, at 17:52:22
In reply to Re: Please don't give up on hope. » janejj, posted by rjk on July 31, 2002, at 16:43:41
I've felt a bit like that. I haven't had a job in 8 months, body feels like its deteriorating quickly... then one day I took the right hormone combo and felt around 80%, up from maybe 10%. More importantly it pointed me in a direction for diagnosis. The hormone is just a stop-gap measure. And lastly, it showed me that almost over-night I could be returned to the self I used to know. A self I was worried might no longer exist.
Under-neath how you feel now is probably still the old you. It's hard to remember, but that man would not want you to give up, even knowing what you're going through.
If you had to tolerate 5 years of this it would be worth it if you only could know that the rest would be 100%. It is the not knowing that kills more than the day to day pain, well at least for me.
It helped me to set a reasonable time limit. For me that was 5 years to find some way to improve life, and it had to be 5 years from the time I actively started trying. It has taken one year (a whole year) to get to 80%. If the five years had passed with no solution (and still if it turns out I have some inoperable tumor or something) I would not stay around to suffer. Along the way I have been told such horrible things as "you were born this way". Those things are not to be believed. It's time for looking for help and answers, not time to allow wayward docs to brand you as something you know you are not.
I don't believe that people should have to suffer and be uncomfortable all the time and be expected to just live with it if the condition is expected to last for life. A reasonable time period is how long it would take for the medical world to diagnose and treat a rare condition, at least a few years, and then for good measure add a couple years in case the first round of specialists are uninterested or hopelessly dumb or get on the wrong track.
If you were diabetic you would most likely not rather die than take insulin. It is hard to accept a condition that requires diagnosis and treatment when we used to be just normal healthy people. But diabetics do eventually accept that. Just like that, we need to get appropriate help. Diabetes is an "easy" disease to diagnose but it can take a year or two for most people to really figure it out because that is just the way it is. Rarer or more subtle problems take longer. Psychiatric issues take longer. Combined medical and psychiatric issues or multiple problems take even longer. If the doctors you've seen have blown you off, find a doctor you can work with. Find one who agrees you should not have to live like this forever.
Even when you feel terrible I've seen you give good advice to people and your words are rational. There is more to your 10% than in many people's 100%s. I know that 10% is not acceptable -- it's just not. But you don't seem beyond hope in any way. No more so than the people I see here that suddenly one day get a solution. It is worth it to stick it out.
I'm sorry you are suffering.
Have you been able to follow-up at all with the finding of the slow EEG? That seems to me like something to gather about 10 unrelated expert opinions on before tossing it aside as irrelevant. It's evidence of a true problem.
Lastly, if you don't have one, get a therapist just to bounce ideas off of and who can get you through the roughest spots. Therapy most likely can't itself change your brain chemistry, but a kind word never hurts the day to day living.
Kate
Posted by cybercafe on August 1, 2002, at 2:52:19
In reply to Re: Please don't give up on hope. » janejj, posted by rjk on July 31, 2002, at 16:43:41
rjk >> if you are going to kill yourself anyway, you don't have anything to lose by heading to the hospital and trying ECT do you? .. it is very likely that you will feel 100% better -- can you even imagine what that would be like?
Posted by shar on August 1, 2002, at 3:03:13
In reply to Re: I'm finished » Phil, posted by rjk on July 31, 2002, at 14:26:05
What do you think about researching natural supplements, as opposed to psych meds. I'm becoming more interested in that area. Not bandwagon interested, but finding out what herbs might be helpful, regardless of whether they are the latest and greatest.
I have this idea that recipes now lost to us (from olden days) might be a dang good starting point. Also, I am planning a trip to an apothecary (Chinese) where they know about herbs, and get some help there.
I just don't want to rule anything out because it's not used in western medicine. Plus, my AD experiences have not been that good.
There are actually some good, controlled studies coming out reporting the use and efficacy of some herbs and supplements. That's a big help.
Whatever you do, good luck.
Shar
Posted by denise528 on August 1, 2002, at 4:01:28
In reply to Re: I'm finished » Phil, posted by rjk on July 31, 2002, at 14:26:05
> > Promising post from pharmrep. Stick around and hope will come back, there's no doubt.
> >
> >
> >
> >
> >
> > I am a Celexa rep, and will be marketing Lexapro once the FDA gives final approval (sometime in August is what we've been told). I have gone to extra training to know the differences between Celexa and Lexapro, and when the samples go to the Dr's, so will the studies (very impressive.)
> > As far as efficacy...yes it will be more effective than Celexa or any antidepressant available...it will also be more tolerable with "side-effects and discontinuation due to adverse events comparable to placebo." That last quote is being allowed by the FDA...awesome. And most importantly...Lexapro is replacing Celexa because the technology to separate the isomers is just now available...so Ritch, you are partially right, but re-patent? Wrong...Celexa will still be available for 3 years before going generic. Dont lump Forest in with some other unethical pharm companies who get FDA approval years in advance, and then don't offer the new drug til the old one goes generic. Forest is moving to Lexapro because studies show Lexapro is better, and all our efforts will be in promoting the better drug. Hard to believe a company is giving up over $5 billion over the next 3 years...I guess the message Forest is sending is that it that sure Lexapro is that good.
> >
>
> Phil, thanks for your message.
>
> I am sure this new drug will be very good, but there is no way that I can take any meds whatsoever. The problem is that I had a reaction to a combo of A/Ds, which has left my brain so sensitive to meds that I dare not take any more.
>
> It seems that I am between a rock and a hard place. I feel absolutely terrible, but taking more meds will only make things worse. Its a no win situation.
>
> Richard
>
>
Richard, what about ECT or this VNS Stimulator that may help depression, have you considered that?Denise
Posted by rjk on August 1, 2002, at 7:59:15
In reply to Re: Please don't give up on hope., posted by cybercafe on August 1, 2002, at 2:52:19
>
> rjk >> if you are going to kill yourself anyway, you don't have anything to lose by heading to the hospital and trying ECT do you? .. it is very likely that you will feel 100% better -- can you even imagine what that would be like?
>
I have been told that I can't even have ect.I suppose that if I told them that I was going to kill myself unless they did it, then they might give it to me.
The outcome of all my medical experts is that I receive psychotherapy, which I find a waste of time. Not least because every time I see her she tells me it is a medical matter and asks me whether or not I think it is worth seeing her again.
It is all a waste of time. My head is fucked and I can't ever see it getting better.
Posted by rjk on August 1, 2002, at 8:27:54
In reply to Re: Richard, what about ect or VNS?, posted by denise528 on August 1, 2002, at 4:01:28
> > > Promising post from pharmrep. Stick around and hope will come back, there's no doubt.
> > >
> > >
> > >
> > >
> > >
> > > I am a Celexa rep, and will be marketing Lexapro once the FDA gives final approval (sometime in August is what we've been told). I have gone to extra training to know the differences between Celexa and Lexapro, and when the samples go to the Dr's, so will the studies (very impressive.)
> > > As far as efficacy...yes it will be more effective than Celexa or any antidepressant available...it will also be more tolerable with "side-effects and discontinuation due to adverse events comparable to placebo." That last quote is being allowed by the FDA...awesome. And most importantly...Lexapro is replacing Celexa because the technology to separate the isomers is just now available...so Ritch, you are partially right, but re-patent? Wrong...Celexa will still be available for 3 years before going generic. Dont lump Forest in with some other unethical pharm companies who get FDA approval years in advance, and then don't offer the new drug til the old one goes generic. Forest is moving to Lexapro because studies show Lexapro is better, and all our efforts will be in promoting the better drug. Hard to believe a company is giving up over $5 billion over the next 3 years...I guess the message Forest is sending is that it that sure Lexapro is that good.
> > >
> >
> > Phil, thanks for your message.
> >
> > I am sure this new drug will be very good, but there is no way that I can take any meds whatsoever. The problem is that I had a reaction to a combo of A/Ds, which has left my brain so sensitive to meds that I dare not take any more.
> >
> > It seems that I am between a rock and a hard place. I feel absolutely terrible, but taking more meds will only make things worse. Its a no win situation.
> >
> > Richard
> >
> >
> Richard, what about ECT or this VNS Stimulator that may help depression, have you considered that?
>
> Denise
>Thanks Denise, but I have never heard of VNS. What is it?
Richard
Posted by Mashogr8 on August 1, 2002, at 10:57:20
In reply to Re: Richard, what about ect or VNS? » denise528, posted by rjk on August 1, 2002, at 8:27:54
VNS is a procedure with a device implanted in your chest with electrical (I think) pulses. The device is attached to the vagus nerve. Originally it was designed for controlling epilepsy. Some epileptics who were also depressed noted improvement in their depression, I believe. A research project was designed. Sixty people wwere recruited for the first study. The current study involving 232 or 322 subjects is now closed. I would love to know if anyone knows of any other research projects involving VNS.
You can get further info on www.cyberonics.com
MA
Posted by rjk on August 1, 2002, at 11:57:16
In reply to Re: Richard, VNS?, posted by Mashogr8 on August 1, 2002, at 10:57:20
> VNS is a procedure with a device implanted in your chest with electrical (I think) pulses. The device is attached to the vagus nerve. Originally it was designed for controlling epilepsy. Some epileptics who were also depressed noted improvement in their depression, I believe. A research project was designed. Sixty people wwere recruited for the first study. The current study involving 232 or 322 subjects is now closed. I would love to know if anyone knows of any other research projects involving VNS.
>
> You can get further info on www.cyberonics.com
>
> MAThanks. I did see something about it on TV a while ago and the results did seem quite good. I will check it out at the web site you mention.
Richard
Posted by rjk on August 1, 2002, at 12:08:24
In reply to Re: Richard, VNS?, posted by Mashogr8 on August 1, 2002, at 10:57:20
I have checked out their web site. It sounds interesting. I have sent them an email and asked them to let me have some more info. They also have an office in Europe, which is good because I am in England.
I am surprised that nobody has previously mentioned this on the message board.
Thanks again.
Richard
Posted by janejj on August 1, 2002, at 12:41:15
In reply to Re: Please don't give up on hope. » janejj, posted by rjk on July 31, 2002, at 16:43:41
Hi Richard,
I was thinking about your problem last night and it occured to me that you could possibly try de-sensitisation therapy. If there is a drug that you have responded well to, you could try taking the minutest bit and try to build it up very slowly. It sounds like you are very sensitive,so I mean like a dose thats so low its not medicinally beneficial at first.
I know they do this for people with allergies, inject them with the pollen until they become more or less immune to negative effect.
Just a thought, good luck,
Janejj
Posted by jaby on August 1, 2002, at 12:55:28
In reply to Re: Richard, what about ect or VNS? » denise528, posted by rjk on August 1, 2002, at 8:27:54
I have gone through a silimar experience to you with the med sensitivity thing. I always used to push the upper envelope of trying to get meds to work, but then became sensitive to smallest doses of things. The only thing I can think of (which you may have already tried) is something more "natural" like lithium. I have found it to be very benign and a decent mood booster
Posted by Sea on August 1, 2002, at 19:18:17
In reply to Re: Richard, VNS? » Mashogr8, posted by rjk on August 1, 2002, at 12:08:24
Richard,
You can find additional information on VNS at Mark George's site at the Medical University of South Carolina:
http://www.musc.edu/psychiatry/fnrd/tms.htm
Dr. George was involved in the first VNS trial in treatment-resistant depression and is currently doing research in VNS and other forms of brain stimulation.
Keep hope, keep looking, we all have to have faith that there is something out there that will help us.
Sea
(who hasn't posted in a very long time)
Posted by cybercafe on August 2, 2002, at 2:31:56
In reply to Re: Please don't give up on hope. » cybercafe, posted by rjk on August 1, 2002, at 7:59:15
> I have been told that I can't even have ect.I suppose that if I told them that I was going to kill myself unless they did it, then they might give it to me.
actually i dunno... when my father had ECT they shocked him before the anaesthetic had time to take effect .. and while not being fun... i'm sure the result was (no more depression!)... between benzos, opiates, etc there must be something you can take no?
... did your doc even come up with a name/description of what is wrong with you?
... you should at least be able to have rTMS no? ..
> It is all a waste of time. My head is fucked and I can't ever see it getting better.
i felt the same way -- and then i got better!!
Posted by denise528 on August 2, 2002, at 3:39:06
In reply to Re: Please don't give up on hope. » cybercafe, posted by rjk on August 1, 2002, at 7:59:15
> >
> >Richard,Why are they saying you can't have ECT?
Denise
Posted by rjk on August 2, 2002, at 15:56:42
In reply to Please don't give up on hope.What about this ?rjk, posted by janejj on August 1, 2002, at 12:41:15
> Hi Richard,
>
> I was thinking about your problem last night and it occured to me that you could possibly try de-sensitisation therapy. If there is a drug that you have responded well to, you could try taking the minutest bit and try to build it up very slowly. It sounds like you are very sensitive,so I mean like a dose thats so low its not medicinally beneficial at first.
>
> I know they do this for people with allergies, inject them with the pollen until they become more or less immune to negative effect.
>
> Just a thought, good luck,
>
> JanejjThanks Janejj and thanks for thinking about me.
The problem that I have is this. Since I combined Remeron and Effexor, I have had extreme immediate reactions to any meds that I have taken and the more that I have taken, the more sensitive my brain has become. I am sure that it is not an allergy type thing. I am convinced that that combination of drugs was far too strong for my brain to accept and they have damaged whatever mechanism the brain normally has that mean A/Ds normally take weeks to work. Even if I did start something at a minute dose, I would just be making my brain even more sensitive than it already is. I suppose by now it probably doesn't matter. It will never recover to what it was anyway, so it could be worth a try. The problem is going to be trying to divide a tablet small enough so that it doesn't give me a blinding headache the following day.
Thanks again for your thoughts.
Richard
Posted by rjk on August 2, 2002, at 16:07:57
In reply to Re: Please don't give up on hope., posted by cybercafe on August 2, 2002, at 2:31:56
> > I have been told that I can't even have ect.I suppose that if I told them that I was going to kill myself unless they did it, then they might give it to me.
>
> actually i dunno... when my father had ECT they shocked him before the anaesthetic had time to take effect .. and while not being fun... i'm sure the result was (no more depression!)... between benzos, opiates, etc there must be something you can take no?
>
> ... did your doc even come up with a name/description of what is wrong with you?
>
> ... you should at least be able to have rTMS no? ..
>
> > It is all a waste of time. My head is fucked and I can't ever see it getting better.
>
> i felt the same way -- and then i got better!!
>
Thanks SEA,
I live in England and I am fairly sure that rTMS is not generally available. I looked into it a short while ago. Is it generally available in The States?
Richard
Posted by rjk on August 2, 2002, at 16:14:26
In reply to Re: Why won't they give you ECT?, posted by denise528 on August 2, 2002, at 3:39:06
> > >
> > >Richard,
>
> Why are they saying you can't have ECT?
>
> DeniseHi Denise,
Mainly because there is obviously something wrong physiologically and they think that it could make me worse. It is also because I cannot take the anaesthetic or muscle relaxant, although that would be the least of my worries.
Richard
Posted by rjk on August 2, 2002, at 16:27:44
In reply to I'm finished, posted by rjk on July 31, 2002, at 6:30:08
Thank you everyone who has left me a message.
The real problem is that, whilst I feel completely hopeless at the moment, if I do take any treatment that ultimately leaves me in a worse state than I am now, I will definately end up killing myself. Its an impossible situation. I want to feel better, but am afraid to try anything that ultimately makes me feel worse.
The other problem is that I am getting absolutely no constructive advice from any of the docs that I have seen.
Posted by rjk on August 2, 2002, at 16:38:13
In reply to Re: Richard, what about ect or VNS?RJK, posted by jaby on August 1, 2002, at 12:55:28
> I have gone through a silimar experience to you with the med sensitivity thing. I always used to push the upper envelope of trying to get meds to work, but then became sensitive to smallest doses of things. The only thing I can think of (which you may have already tried) is something more "natural" like lithium. I have found it to be very benign and a decent mood booster.
Thanks Jaby,
what sort of dose of lithium did you take? And did you get any side effects frm it?
Richard
Posted by Gabbi on August 2, 2002, at 17:35:15
In reply to Re: Richard, what about ect or VNS?RJK » jaby, posted by rjk on August 2, 2002, at 16:38:13
Hey I know what you mean about the Afganistan thing. I find it easier to fight things I know the cause of rather than this depression crap. And I think it triggers the same emotional "neurons" as would be triggered if you actually were in more tangible horror.
In a way I feel like a hypocrite saying hang in there, having unsuccessfully "given up" a few times. Its practically impossible to pursue different options medications, doctors when you are battling the depression, but THERE IS HOPE
you just can't feel it right now.
I finally found the right Doctor after 10 years, job loss, relationship destruction loss of friends. and I'd forgotten all the reasons I'd wanted to live, they are creeping back, I could enjoy a book, a cup of tea. In the words of Andrew Solomon "depression doesn't mean your life isn't a mess but the feelings of helplessness and hopelessness are the depression".. please try and remember that.
Posted by susan C on August 2, 2002, at 19:40:38
In reply to Re: Richard, what about ect or VNS?RJK, posted by Gabbi on August 2, 2002, at 17:35:15
vagal nerve stimulation, has been discussed here, there was/is someone who is in a study, reporting on his progress. At the time it was recommended as a possibility for me, 10,000 people were using it world wide for epilepsy. Do a search for VNS , that should get you the posts.
mouse
Posted by cybercafe on August 3, 2002, at 5:25:20
In reply to Re: Please don't give up on hope. » cybercafe, posted by rjk on August 2, 2002, at 16:07:57
> I live in England and I am fairly sure that rTMS is not generally available. I looked into it
... if you are really sensitive to meds, i think you would qualify as not being the general case
take care
Posted by rjk on August 3, 2002, at 11:21:28
In reply to Re: Please don't give up on hope. » cybercafe, posted by cybercafe on August 3, 2002, at 5:25:20
> > I live in England and I am fairly sure that rTMS is not generally available. I looked into it
>
> ... if you are really sensitive to meds, i think you would qualify as not being the general case
>
> take careI will look into it again. Does it work? I have not seen any reports about it on this site.
Posted by cybercafe on August 4, 2002, at 6:50:00
In reply to Re: Please don't give up on hope. » cybercafe » cybercafe, posted by rjk on August 3, 2002, at 11:21:28
> I will look into it again. Does it work? I have not seen any reports about it on this site.
it probably won't be as good as ECT, but i believe it is effective...
considering there are probably zero side effects, i can't come up with a reason not to go for it...maybe you can even get the NHS to send you on a vacation to have it done ?
do you get disability pensions in the UK ?
Posted by rjk on August 4, 2002, at 9:47:54
In reply to Re: Please don't give up on hope., posted by cybercafe on August 4, 2002, at 6:50:00
> > I will look into it again. Does it work? I have not seen any reports about it on this site.
>
> it probably won't be as good as ECT, but i believe it is effective...
> considering there are probably zero side effects, i can't come up with a reason not to go for it...
>
> maybe you can even get the NHS to send you on a vacation to have it done ?The NHS is broke! The only way that I would be able to get it is privately, which I don't mind if it works. Finding somewhere that does it will be the difficult part.
>
> do you get disability pensions in the UK ?Yes, it is called Incapacity Benefit, which is probably $100/week.
Go forward in thread:
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.