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Dr. Bob is Robert Hsiung, MD,
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Posted by gromit on February 11, 2005, at 2:14:46
In reply to Re: rEEG System Helps Guide Prescribing » johnj, posted by Phillipa on February 10, 2005, at 17:27:19
Does anybody know how you would go about getting results from EEG's that were taken a long time ago. I had a ton of them when I was a kid and having seizures, maybe it could be useful to compare them to tests taken now.
Thanks
Rick
Posted by ravenstorm on February 14, 2005, at 11:55:15
In reply to Re: rEEG System Helps Guide Prescribing, posted by gromit on February 11, 2005, at 2:14:46
Do you have to be off your meds to get a true picture of what would work for you? (Like the brain scans that the Amen clinic uses). This is soooo much cheaper. Is there anywhere you can go and get one done?
Posted by Ritch on February 14, 2005, at 13:08:07
In reply to Re: rEEG System Helps Guide Prescribing, posted by ravenstorm on February 14, 2005, at 11:55:15
> Do you have to be off your meds to get a true picture of what would work for you? (Like the brain scans that the Amen clinic uses). This is soooo much cheaper. Is there anywhere you can go and get one done?
I would like to know as well (just echoing your question). When I had a standard EEG done I was on my meds. BUT, they wanted to schedule a followup ambulatory 24-hr. EEG (they wire you up with a portable recorder), and that test required no meds 24 hrs prior to the test, and I would have to stay up all night the night before I came into the office, so I would be sleep deprived. Then they would wire me up, I'd put a ball cap on and go home and write in a journal everything that I did all day long (and at what times so it would correspond with EEG tracings at the time). THEN, I was supposed to go to sleep that night and then after I got up the next morning, was supposed to return to the office for them to remove all the stuff and then analyze the data. The idea of sleep deprivation and being off meds was to "tease" out any abnormalities that otherwise might not get caught on the standard EEG. I didn't go for it because of the $$$$ incurred (that my insurance co.) didn't cough up much for from the std. test and was leery about how much more $$$$ I would be out later down the road. The neurologist I was seeing was charging a lot more than the "standard" fee and I was paying the difference. In hindsight, I wished I would have went on with it and coughed up the $$, just for the heck of it (even if nothing notable or helpful was found).
Anyhow, the article really doesn't mention anything about whether the EEG's they are comparing to the reference database (the rEEG) are *abnormal* or not. It leads me to think that you would *have* to have an abnormal EEG to compare to it in order for this method to work. What if you had lots of problems and needed meds, but your EEG was normal???? Can anybody clarify anything about this?
Posted by franco neuro on February 15, 2005, at 1:01:46
In reply to Re: rEEG System Helps Guide Prescribing » ravenstorm, posted by Ritch on February 14, 2005, at 13:08:07
Man I'm glad I saw this thread. I just had a QEEG (Quantitative EEG) done about 6 weeks ago by a doc in NYC. It was an eye opener to say the least. I decided to get off the medication merry-go-round about 2 years ago and become an informed patient. (And let me tell you, coming off of elavil after 5 years was a major bitch.)
Thank God for the internet! Started reading about neurotranmitters and amino acids and such. Learned about Dr. Amen and the various forms of brain imaging. As luck would have it, one of the books i read was by this doc in New York. I live right outside of the city so off i went.
So, to make a long story even longer, when i got to his office they had me taking personality tests (MBTI), an i.q. test, an ECG and an ultrasound of my heart, and they took 6 viles of blood. Last but not least they hooked me up to the much anticipated QEEG. Which he calls "brain mapping". Six hours and a couple of thousand dollars on my credit card later, i finally got to meet with His Holiness.
The QEEG came back showing that i have extremely low brain voltage. He told me my problem was dopamine. Rather the fact that i have so little of it left in my brain. This would explain why i feel like a walking coma. It would also explain why Paxil, Neurontin, BuSpar(candy), Trazadone, Xanax, etc. never seemed to be getting at the root of my problem. It would also explain why the tyrosine i started taking last summer has helped me a lot with my chronic pain. So there it is. Bring on the Wellbutrin! Hopefully in 6 months or a year my brain will be floating in dopamine. Man i hope this turns out to be what i've been praying for all these years. This feeling like crap stuff is getting real old...as am i...
Posted by Ritch on February 15, 2005, at 9:30:03
In reply to Re: rEEG System Helps Guide Prescribing, posted by franco neuro on February 15, 2005, at 1:01:46
...
> The QEEG came back showing that i have extremely low brain voltage. He told me my problem was dopamine. Rather the fact that i have so little of it left in my brain. This would explain why i feel like a walking coma. It would also explain why Paxil, Neurontin, BuSpar(candy), Trazadone, Xanax, etc. never seemed to be getting at the root of my problem. It would also explain why the tyrosine i started taking last summer has helped me a lot with my chronic pain. So there it is. Bring on the Wellbutrin! Hopefully in 6 months or a year my brain will be floating in dopamine. Man i hope this turns out to be what i've been praying for all these years. This feeling like crap stuff is getting real old...as am i...
Yes, I was told that the EEG's were part of a "brain mapping" thing as well. However, no "tailored" changes to any of my meds was proposed as a result of the "results". Maybe I'm a dyed-in-the-wool cynic, but it just all seemed a little "quacky" to me :) It was several years back. I'd be interested in whatever "debate" there is amongst neurology folks about all of this. I hope you do well with wherever it takes you. Just doesn't seem to be much info about this...
Posted by ravenstorm on February 15, 2005, at 11:53:39
In reply to Re: rEEG System Helps Guide Prescribing » franco neuro, posted by Ritch on February 15, 2005, at 9:30:03
I wish I would have had a scan at the amen clinic when I was off all meds last winter (and totally screwed up by it!) But I would have needed my husbands help to get there and he still wouldn't help me do anything to get back on medications. Now I'm on 15mg of remeron that has made me somewhat functional, but that is it. Am starting to wean of remeron, but would sure like to get some kind of test to at least better my odds with my next med choice. For me, its not just the time seeing if the drug works, its the long taper to get off afterward and the fact that I get worse than I was with every drug withdrawal. I'm going to have my husband start researching this for me. Maybe I can find somewhere to have this done.
Posted by Ritch on February 15, 2005, at 12:04:10
In reply to Re: rEEG System Helps Guide Prescribing, posted by ravenstorm on February 15, 2005, at 11:53:39
> I wish I would have had a scan at the amen clinic when I was off all meds last winter (and totally screwed up by it!) But I would have needed my husbands help to get there and he still wouldn't help me do anything to get back on medications. Now I'm on 15mg of remeron that has made me somewhat functional, but that is it. Am starting to wean of remeron, but would sure like to get some kind of test to at least better my odds with my next med choice. For me, its not just the time seeing if the drug works, its the long taper to get off afterward and the fact that I get worse than I was with every drug withdrawal. I'm going to have my husband start researching this for me. Maybe I can find somewhere to have this done.
Just a thought.. But you *might* schedule an appt. with your PCP and see if you can get them to refer you to a local neurologist. If you can swing that, then bring this up with the neuro at the appt. and pick their brains and tell us what's up with this.. :)
Posted by franco neuro on February 15, 2005, at 12:30:13
In reply to Re: rEEG System Helps Guide Prescribing » franco neuro, posted by Ritch on February 15, 2005, at 9:30:03
Oh believe me i understand your skepticism completely. The natural optimism i was born with was pummeled out of me by the medical community a long time ago. I debated for 6 months after i read this guy's book whether i should go see him or not. I've been to too many doctors who supposedly had all the answers to get my hopes up now. All they left me with was an empty bank account and a brain that was more fried than ever.
The thing is I can't just keep popping medications haphazardly with no method to the madness. I've had urine and blood neurotransmitter levels tested, but nobody seems to know how to interpret them.
I had a feeling that low dopamine and/or norepinephrine was at the root of my problem before i had the "brain mapping" done. So maybe the fact that it came back supporting my "theory" bolstered my confidence in it a little. But you are right...there is precious little info. out there about the efficacy of this type of testing. It makes sense in theory, but so do a lot of otherwise ridiculous ideas.
I guess the only way to find out is to start popping a dopamine friendly med. (Wellbutrin) and see if it helps.
Posted by franco neuro on February 15, 2005, at 13:02:40
In reply to Re: rEEG System Helps Guide Prescribing, posted by ravenstorm on February 15, 2005, at 11:53:39
> I wish I would have had a scan at the amen clinic when I was off all meds last winter (and totally screwed up by it!) But I would have needed my husbands help to get there and he still wouldn't help me do anything to get back on medications. Now I'm on 15mg of remeron that has made me somewhat functional, but that is it. Am starting to wean of remeron, but would sure like to get some kind of test to at least better my odds with my next med choice. For me, its not just the time seeing if the drug works, its the long taper to get off afterward and the fact that I get worse than I was with every drug withdrawal. I'm going to have my husband start researching this for me. Maybe I can find somewhere to have this done.
I feel your pain. Believe me we're all in the same boat. (And apparently it's sinking fast.) The problem is, we actually would like to know what the problem is and why we're being prescribed certain meds. The doctors on the other hand just want us to be good little patients and take our pills and stop complaining. It's not that they're all bad people...it's just that the brain happens to be the most complicated object in the universe. They don't know any more about how it works than most of the posters on this website. Actually, they probably know less because they're not on the internet 24/7 researching this stuff like a lot of the people here are. I'm sure there are some nutty professor types in some lab in Princeton or Harvard that are up on this stuff and could help us out a little. But i'll be damned if i know how to get in touch with them. The best we could do is surf the web and read and spend a lot of money on unproven medical tests that may or may not point us in the right direction. I mean there are so many medications and possible combinations that you could spend your whole life trying to hit on the right formula that works for you. You have to titrate up and than take it for a while and if it doesn't work you have to wean off of it so you don't freak out and than start the process all over again with a new one. Meanwhile we're losing the one thing we can't make more of...time...
Posted by Phillipa on February 15, 2005, at 17:02:32
In reply to Re: rEEG System Helps Guide Prescribing, posted by franco neuro on February 15, 2005, at 13:02:40
How come I've had numerous MRI's of the brain, and had neurologists read them. They say my brain has nothing wrong with it. What do you have to have a dx of to get an rEEG done, or even just an EEG? Fondly, Phillipa
Posted by ravenstorm on February 15, 2005, at 17:33:04
In reply to Re: rEEG System Helps Guide Prescribing, posted by Phillipa on February 15, 2005, at 17:02:32
I wish you luck with the wellbutrin. I know I am dopamine depleted from SSRI's, but I couldn't tolerate the severe anxiety and agitation that began about five weeks in to my WB trial. Tried to stay on it another couple months augmenting for anxiety. . .but no dice.
Posted by franco neuro on February 15, 2005, at 20:31:01
In reply to Re: rEEG System Helps Guide Prescribing, posted by Phillipa on February 15, 2005, at 17:02:32
I've had an MRI done too and it came up negative. But MRI's are designed to detect structural problems in the brain. Things like aneurysms and such. An EEG is totally different. It's measuring electrical patterns generated within the brain by neurotransmitter activity. By looking at the patterns and comparing them to a standard that represents an "optimally functioning" brain they can tell what is out of balance. At least that's the idea. It's all pretty new and cutting edge stuff and may be a complete crock. But i figured what the heck it's worth a shot.
As far as the dx is concerned that wasn't really a problem because i paid out of pocket. And if you're willing to do that they'll pretty much give you any test you want. Things may be different on your part of the planet though :-)
Posted by franco neuro on February 15, 2005, at 20:43:33
In reply to Re: rEEG System Helps Guide Prescribing, posted by ravenstorm on February 15, 2005, at 17:33:04
> I wish you luck with the wellbutrin. I know I am dopamine depleted from SSRI's, but I couldn't tolerate the severe anxiety and agitation that began about five weeks in to my WB trial. Tried to stay on it another couple months augmenting for anxiety. . .but no dice.
Thanks. I'm a little worried about that myself. But my main problem right now is utter lack of motivation. I used to think feeling bad and angry was the worse thing in the world. Now i know that feeling nothing is even worse than being sad or pissed off. It really hit me when i stopped the elavil. But after 5 years on it and having to up the does over time the side effects really started doing a number on me. I figure i'll take the anxiety if it gets me engaged in life again. I can always take the zoloft or klonopin along with it. Actually they say that the wellbutrin/zoloft combo. has become so popular they're starting to refer to it as well-oft! Whether it'll leave me feeling "well off" remains to be seen...
Posted by sabre on February 16, 2005, at 3:34:26
In reply to Re: rEEG System Helps Guide Prescribing » ravenstorm, posted by franco neuro on February 15, 2005, at 20:43:33
The EEG price tag sounds unappealing.
Have you ever tested the effect of amino acids on your symptoms to give you a hint about your problems, e.g.
-Tryptophan for serotonin (SSRIs, SNRIs)
-Phenylalanine or Tyrosine for dopamine and NA (Wellbutrin, Noradrenaline)
-St Johns Wort -Serotonin, DA, NA and GABA - (MAOI, Moclobemide)
-Vitex Agnus - Dopamine (Wellbutrin)I don't think they will cure you but perhaps they can help narrow the search at a lower price.
sabre
Posted by dove on February 16, 2005, at 9:06:29
In reply to Re: rEEG System Helps Guide Prescribing, posted by sabre on February 16, 2005, at 3:34:26
Quick question for those in the know.... Even if I have EEG records, who would I contact to get them interpreted using this system?
I've had a number of EEGs done (sleep deprived and otherwise), so there are plenty of records, and they have been reviewed by more than one neurologist in the past. However, I wouldn't know where to begin looking for someone who is knowledgeable regarding this new prescribing regimen.
So, besides the cost of getting an EEG done, you'd have to pay for a Neuro specialist who is hopefully versed in this. Is there a company website or anything where one can search for a trained doc, or even a doc who'd take records through mail for a nominal fee?
dove
Posted by franco neuro on February 16, 2005, at 13:35:59
In reply to Re: rEEG System Helps Guide Prescribing, posted by sabre on February 16, 2005, at 3:34:26
> The EEG price tag sounds unappealing.
>
> Have you ever tested the effect of amino acids on your symptoms to give you a hint about your problems, e.g.
>
> -Tryptophan for serotonin (SSRIs, SNRIs)
> -Phenylalanine or Tyrosine for dopamine and NA (Wellbutrin, Noradrenaline)
> -St Johns Wort -Serotonin, DA, NA and GABA - (MAOI, Moclobemide)
> -Vitex Agnus - Dopamine (Wellbutrin)
>
> I don't think they will cure you but perhaps they can help narrow the search at a lower price.
>
> sabre
Paying for my QEEG was indeed very unappealing. But i'm getting desperate to find the right med or combo. that'll get the job done. I'm just trying to compile enough data so i can come to my own "educated" conclusion about what meds i should be taking.One of the things i found was that taking tyrosine does help me. So you're definitely right about using aminos/herbs/supplements to help point one in the right direction. So here's where i'm at:
-tyrosine helps
-SSRI's do very little for me
-my father takes Sinemet for Parkinsonism (I may have a genetic predisposition toward low dopamine. Actually, i was thinking of popping one of them just to see what it would do for me.)
-the QEEG came back showing i have very low dopamineAt this point i'd say i'm ready to go the pro-dopamine/norepinephrine route. I'm going with Wellbutrin first and if that doesn't work i'll check out desiprimine or reboxetine or selegiline etc. Whether it's the right path remains to be seen. I'm cautiously optimistic...
Posted by franco neuro on February 16, 2005, at 14:00:29
In reply to Re: rEEG System Helps Guide Prescribing, posted by dove on February 16, 2005, at 9:06:29
>
>
> Quick question for those in the know.... Even if I have EEG records, who would I contact to get them interpreted using this system?
>
> I've had a number of EEGs done (sleep deprived and otherwise), so there are plenty of records, and they have been reviewed by more than one neurologist in the past. However, I wouldn't know where to begin looking for someone who is knowledgeable regarding this new prescribing regimen.
>
> So, besides the cost of getting an EEG done, you'd have to pay for a Neuro specialist who is hopefully versed in this. Is there a company website or anything where one can search for a trained doc, or even a doc who'd take records through mail for a nominal fee?
>
> dove
God do I wish I was "in the know". For both of our sakes. I've been at this stuff for ten years and my own brain is still a complete mystery to me. I happened to get lucky finding the doc who did my QEEG. I read his book "The Edge Effect" and it turned out he has an office in NYC. I doubt if the QEEG in and of itself can give a complete diagnosis. I'm just using it as another clue to help me solve the mystery that is my brain. (See my previous post for some of the other "clues" i've compiled.)Stupid question but have you done a "QEEG" search on google? I just did and a whole mess of interesting sites came up. Whether any offer the type of service you're looking for is anybody's guess. If I come across anything that looks promising I'll be sure to post it back up on this thread.
Posted by sabre on February 16, 2005, at 16:01:24
In reply to Re: rEEG System Helps Guide Prescribing » sabre, posted by franco neuro on February 16, 2005, at 13:35:59
Hi Franco neuro
I'm very interested to see how you find Wellbutrin. It think it is only prescribed for smokers wishing to give up cigarettes in Australia as Zyban. I might be wrong?
I was wary of it because so many people seem to have anxiety problems using it.
We do have Reboxetine, so I'm keen to try it. I was holding out though to see what I could achieve using supplements first. But I suspect I will need something stronger soon.
Look forward to following your pathway!
sabre
Posted by franco neuro on February 16, 2005, at 20:11:51
In reply to Re: rEEG System Helps Guide Prescribing, posted by sabre on February 16, 2005, at 16:01:24
I'll be sure to keep you posted. Wellbutrin (bupropion) is also sold as Zyban here in the U.S. for people who are trying to quit smoking. As far as I know they are the exact same drug. The only difference is that Wellbutrin is sold in an extended release SR version and a once a day XL version. I'll discuss with my doc next week which one would be the best choice for me to start with. You might want to check out this site: www.preskorn.com That guy really knows his medications. Sometimes the regular (non-timed release) versions are better because you can fine tune your dose by cutting them in half. That's something you should never ever do with an SR or XL pill.
I really wish I had learned more about amino acids and their role in neurotransmitter synthesis a long time ago. Maybe I could have avoided getting so burned out. But you live and learn. I plan on continuing with the tyrosine even after I start the Wellbutrin. Just to be sure there's enough raw material for my brain to work with. Unless I find out that it interferes with the medication. Which I highly doubt because the medication is working at the NE and DA reuptake pumps well beyond the point at which tyrosine is synthesized into L-dopa. And don't forget those co-factors, especially Vit. B6. As a matter of fact all the B vitamins are important as well as Vit. C.
By the way feel free to call me franco, franc, fn or whatever's easiest for you to type :-)
Posted by sabre on February 18, 2005, at 2:19:30
In reply to Re: rEEG System Helps Guide Prescribing » sabre, posted by franco neuro on February 16, 2005, at 20:11:51
Posted by BobS, on February 19, 2005, at 12:28:08
In reply to Re: ok franco! (nm) » franco neuro, posted by sabre on February 18, 2005, at 2:19:30
Everyone,
I have had three, two with an advanced version of the QEEG to help determine what internal structures in the brain are emitting abnormal waves relative to a control database. The process seems to have "confirmed" OCD (mild to moderate) and a depression which became less severe from the first to the second.At the first QEEG, while already on meds (Paxil 37.5 mg Xanax 2.5 to 3.0 and coming off Remeron 15 mg) a reading was done. Then the doctor administered TRH (Thyroid Stim Hormone) and did another reading. The TRH showed improved (not normal but improved) activity at several key areas. Based on that test we changed my regimen to Cytomel 20 mcg, Cymbalta 40 mg and Paxil 17.5).
The above seemed to help, but I did not have remission. Then a second was done several months later which showed improvement in depression, but not the OCD. The regimen was changed again to Cytomel 35 mcg, Cymbalta 80 mg and Paxil 15 mg (because I was on Paxil previously and it did not work as well the second time around) but need additional serotonin for OCD. BTW, I can only tolerate Paxil as meds like Zoloft and Lexapro send me through the roof with agitation and akathisia.
So the bottom line is I am improved, but not remitted and still have a long way to go.
My dx is harm avoidant OCD, atypical depression with some MDD now. My symptoms are moderate to severe anxiety with some of the melancholic features of MDD.
I hope that helps.
Regards,
BobS.
Posted by franco neuro on February 20, 2005, at 12:02:24
In reply to My doc uses QEEG - Long, posted by BobS, on February 19, 2005, at 12:28:08
Thanks Bob,
I figure there isn't really one test that can give us all the answers, but every little bit of info. helps. My QEEG showed very low brain voltage. Which, according to the doc who gave it to me, is indicative of very low dopamine.
Since my main problems right now are depression, lack of motivation and unfortunately chronic pain, I think he may be onto something. Also, my father takes Sinemet for parkinsonism. I want to start acting on it now before I get to a state of overt parkinsonism. We're trying to decide on the right dopaminergic med. We may go with Wellbutrin to start. I go back to see the doc. this week.
Posted by KaraS on February 21, 2005, at 2:36:24
In reply to rEEG System Helps Guide Prescribing, posted by johnj on February 10, 2005, at 8:41:54
How do you locate doctors who use this system?
Also, is rEEG the same as QEEG?
Posted by franco neuro on February 21, 2005, at 23:09:01
In reply to Re: rEEG System Helps Guide Prescribing, posted by KaraS on February 21, 2005, at 2:36:24
Hi,
I just happened to get lucky. (I hope it turns out to be good luck.) I read a book called "The Edge Effect" and it turned out the dr. who wrote it is located in New York City. I live right across the river in New Jersey so I went. I don't know if this stuff works or not. I just had it done recently and haven't started on the med/meds to correct the "problem" it detected yet. I have read a lot about it though and it does seem to have some scientific merit. As far as I can tell when some docs use the EEG or QEEG(Quantitative EEG) for diagnostic purposes they refer to it as rEEG (Referernce EEG). My doc uses a QEEG and calls it "brain mapping". I think it's pretty much the same thing. Here are some links that may be helpful. Just do a google search for QEEG and put your state or province etc. Good luck...
http://www.snr-jnt.org/topics/qeeg/eegbiofeedback.htm
http://www.crossroadsinstitute.org/brainmap.html
http://www.brooksideinstitute.com/research-news-archive/research-emory-eeg.html
http://www.drmarkschiller.com/note.htm
http://www.passagesmalibu.com/rehab.cfm?Display=Neuropsychiatry
http://www.nyacadtbi.org/members.htm
http://www.qeeg.com/
http://home.iprimus.com.au/rboon/QuantitativeElectroencephalographQEEG.htm
http://www.q-metrx.com/qeeg.htm
Posted by KaraS on February 22, 2005, at 3:24:17
In reply to Re: rEEG System Helps Guide Prescribing » KaraS, posted by franco neuro on February 21, 2005, at 23:09:01
> Hi,
>
> I just happened to get lucky. (I hope it turns out to be good luck.) I read a book called "The Edge Effect" and it turned out the dr. who wrote it is located in New York City. I live right across the river in New Jersey so I went. I don't know if this stuff works or not. I just had it done recently and haven't started on the med/meds to correct the "problem" it detected yet. I have read a lot about it though and it does seem to have some scientific merit. As far as I can tell when some docs use the EEG or QEEG(Quantitative EEG) for diagnostic purposes they refer to it as rEEG (Referernce EEG). My doc uses a QEEG and calls it "brain mapping". I think it's pretty much the same thing. Here are some links that may be helpful. Just do a google search for QEEG and put your state or province etc. Good luck...
>
> http://www.snr-jnt.org/topics/qeeg/eegbiofeedback.htm
> http://www.crossroadsinstitute.org/brainmap.html
> http://www.brooksideinstitute.com/research-news-archive/research-emory-eeg.html
> http://www.drmarkschiller.com/note.htm
> http://www.passagesmalibu.com/rehab.cfm?Display=Neuropsychiatry
> http://www.nyacadtbi.org/members.htm
> http://www.qeeg.com/
> http://home.iprimus.com.au/rboon/QuantitativeElectroencephalographQEEG.htm
> http://www.q-metrx.com/qeeg.htm
Thanks. I've been following this thread and I recently requested Dr. Braverman's book from the library. I also went to his website. I like that he has a such a complete way of dealing with depression - both holistic and traditional. I'm fascinated by the QEEG testing as well. I'm very curious to see how you make it.Take care,
Kara
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