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Posted by ravenstorm on June 15, 2005, at 10:45:10
In reply to Re: rEEG intake session - follow-up » KaraS, posted by ed_uk on June 15, 2005, at 9:09:14
Could you please tell us what doctor/clinic you are seeing, so others could benefit from this treatment? I am very interested. Thanks.
Posted by KaraS on June 15, 2005, at 17:03:26
In reply to Re: rEEG intake session - follow-up, posted by ravenstorm on June 15, 2005, at 10:45:10
> Could you please tell us what doctor/clinic you are seeing, so others could benefit from this treatment? I am very interested. Thanks.
Hi,I sent you a babblemail with the details.
If all goes really well for me and there's enough interest on the board, then I'll post all of the details here as well.
Kara
Posted by Cairo on June 16, 2005, at 19:43:36
In reply to Re: Great news! Let us know how it goes., posted by Phillipa on June 11, 2005, at 17:17:30
Here's the thread:
http://www.dr-bob.org/babble/20050322/msgs/473939.html
Cairo
> Kara, That Thread you mention is well worth finding. There's a doctor who has a clinic which uses all the various scans who contributes to the Thread. It is through and extremely interesting. Google it. Fondly, Phillipa
Posted by Cairo on June 16, 2005, at 19:59:19
In reply to Re: what clinic/doctor are you seeing? » iforgotmypassword, posted by KaraS on June 13, 2005, at 2:01:14
I would greatly appreciate the name of the doctor/clinic also. Thank you.
Cairo
> I'll send you a babblemail with the details.
>
> K
Posted by Phillipa on June 16, 2005, at 20:23:14
In reply to Re: what clinic/doctor are you seeing? » KaraS, posted by Cairo on June 16, 2005, at 19:59:19
That's it! That's the one. I thought it was a great Thread. It's so nice when a doctor takes the time don't you think? Fondly, Phillipa
Posted by KaraS on June 17, 2005, at 1:17:35
In reply to Re: what clinic/doctor are you seeing? » KaraS, posted by Cairo on June 16, 2005, at 19:59:19
I had wanted to see how things turned out before posting the name the name of the doctor/clinic but I think enough people are interested so I'll just post that information here now.
There are 3 doctors who are fully versed in how to use rEEG though there are also quite a few others who use it with outside help in interpreting results and advising treatment. The doctor who was posting here on Babble and answered a lot of our questions is one of the 3. He isn't the one I am going to however.
The doctor I saw is Hamlin Emory. He's located around Los Angeles (an office in Beverly Hills and another one in Thousand Oaks). He's one of the two doctors who devised the whole rEEG process. I believe the brain scans existed already but they devised a way to compare them to similar brain scans of others to see what medications worked for those others. They created a database with the results of many scans that is used to help prescribe for new patients. Anyway, here's his website:
and here's the website for the company he founded that created the database:
By following links on these websites you should be able to find out if there are any doctors near where you live who use this system.
I was impressed at my first visit but it is very early in the process for me. I don't know yet what he is going to prescribe for me or what kind of result I will have. I'll continue to post about my experience as it plays out. I've heard of people that he has been able to help very quickly but I've also heard of at least one person who had a prolonged period of testing things out and retaking the brain scans. She is the person who recommended him so highly to me. My fingers are crossed that it works out well for me and that I'm able to recommend this to help many others.
Kara
Posted by 4WD on June 17, 2005, at 22:00:47
In reply to Re: the clinic/doctor I'm going to, posted by KaraS on June 17, 2005, at 1:17:35
Kara, thanks for posting all of this. Many of us here are holding our breaths for you (and for us, too).
Marsha
Posted by KaraS on June 17, 2005, at 22:40:39
In reply to Re: the clinic/doctor I'm going to » KaraS, posted by 4WD on June 17, 2005, at 22:00:47
> Kara, thanks for posting all of this. Many of us here are holding our breaths for you (and for us, too).
>
> Marsha
Thanks so much! I'm a little discouraged right now because I have to wait another couple of weeks for the rEEG test. I've been having the worst time getting prior blood test results faxed over to Dr. Emory's office. Because of that I won't be able to get the rEEG done before the technician goes on vacation. Oh well, what's another couple of weeks when you've suffered for years already, right?k
Posted by 4WD on June 17, 2005, at 22:48:15
In reply to Re: the clinic/doctor I'm going to » 4WD, posted by KaraS on June 17, 2005, at 22:40:39
> Thanks so much! I'm a little discouraged right now because I have to wait another couple of weeks for the rEEG test. I've been having the worst time getting prior blood test results faxed over to Dr. Emory's office. Because of that I won't be able to get the rEEG done before the technician goes on vacation. Oh well, what's another couple of weeks when you've suffered for years already, right?Uhh, hell?
Marsha
>
> k
Posted by KaraS on June 18, 2005, at 2:20:35
In reply to Re: the clinic/doctor I'm going to » KaraS, posted by 4WD on June 17, 2005, at 22:48:15
Posted by Cairo on June 18, 2005, at 12:06:11
In reply to Re: the clinic/doctor I'm going to » 4WD, posted by KaraS on June 17, 2005, at 22:40:39
Dr. Emory's site lists links to only Drs. Schiller and Hoffman. Any idea who else can do the rEEG on the east coast or in the South, but works with CNS Response?
Cairo
Posted by 4WD on June 18, 2005, at 15:19:42
In reply to Re: Other rEEG locations?, posted by Cairo on June 18, 2005, at 12:06:11
> Dr. Emory's site lists links to only Drs. Schiller and Hoffman. Any idea who else can do the rEEG on the east coast or in the South, but works with CNS Response?
>
> Cairo
Hi Cairo,There's a place on that site where you can contact them by email. You tell them where you live and someone will email you back and tell you if there is a clinic or doctor near you who does it. I emailed them, two days later got back a nice response telling me that unfortunately there was no doctor in my area.
Hope this helps.
Marsha
Posted by ravenstorm on June 21, 2005, at 14:06:06
In reply to Re: Other rEEG locations? » Cairo, posted by 4WD on June 18, 2005, at 15:19:42
Thanks for the babble mail. I haven't been well enough to be on the computer for a few days.
I am a bit concerned about the person who had to keep trying out different meds even after the rEEG. I mean, I thought that is what the rEEG was suppossed to eliminate: the trial and error process. What went wrong with her tests. Or could she not stand the side effects of the meds. That is my concern. A medication might "match" to fix my symptoms, but what if I am so sick on it I can't take it? (I get severe stomach problems, nausea from almost everything!)
Thanks! Keep us posted
Posted by KaraS on June 21, 2005, at 17:37:43
In reply to Re: KaraS, posted by ravenstorm on June 21, 2005, at 14:06:06
> Thanks for the babble mail. I haven't been well enough to be on the computer for a few days.
>
> I am a bit concerned about the person who had to keep trying out different meds even after the rEEG. I mean, I thought that is what the rEEG was suppossed to eliminate: the trial and error process. What went wrong with her tests. Or could she not stand the side effects of the meds. That is my concern. A medication might "match" to fix my symptoms, but what if I am so sick on it I can't take it? (I get severe stomach problems, nausea from almost everything!)
>
> Thanks! Keep us posted
Hi,
Unfortunately, not being able to physically tolerate medication(s) that will probably work for you (based on the rEEG) is always a concern. The rEEG will only tell you what it thinks will work for your brain, nothing else.The reason I was given that it took so long for this particular person to get results was that she had several other issues going on that weren't yet addressed by the time she started the rEEG. It turned out that once she started working with a holistically oriented MD and she got tested and treated for many other things that were throwing her system off, that she started to respond to the rEEG recommendations. (I don't remember all of her issues but I know that she had hormonal problems, thyroid issues that hadn't been recognized and a problem breaking down or utilizing one of the B vitamins (B6 I think?) along with allergy issues). Dr. Emory does have you test for thyroid problems when you start out with him or you can give him prior results. She used tests from a previous doctor or lab that weren't all that accurate. In her case, she ended up having her new MD and Dr. Emory working closely together and coming up with solutions for her. She now takes Parnate, amino acids, hormones, Armour thyroid, vitamins and supplements, B12 shots, enzymes and uses a lightbox. Her "cure" involved a lot of other things besides what Dr. Emory deals with because her situation warranted it. She now considers herself 100% better though.
I hope that my situation is less complicated and that the rEEG alone will be enough for me. I personally feel that for a lot of us who are treatment resistant, that there probably are other factors invovled for us, however, so I wouldn't be surprised if I need to have some other things in my system checked out.
Kara
Posted by Cairo on June 21, 2005, at 21:12:12
In reply to Re: KaraS » ravenstorm, posted by KaraS on June 21, 2005, at 17:37:43
I'm having a very difficult time bringing up studies regarding the use of rEEG and medication response/prescribing. Most point back to Dr. Emory or the other listed on his website.
Other than UCLA, is there anyone/place doing studies on the effectiveness of rEEG? I've raised the issue of it for my daughter who is a very tough case, but my husband wants to see institutional studies.
Help, anyone? Thanks.
Cairo
Posted by KaraS on June 22, 2005, at 3:14:09
In reply to Re: rEEG validation, posted by Cairo on June 21, 2005, at 21:12:12
> I'm having a very difficult time bringing up studies regarding the use of rEEG and medication response/prescribing. Most point back to Dr. Emory or the other listed on his website.
>
> Other than UCLA, is there anyone/place doing studies on the effectiveness of rEEG? I've raised the issue of it for my daughter who is a very tough case, but my husband wants to see institutional studies.
>
> Help, anyone? Thanks.
>
> Cairo
Unfortunately I can't help you. I couldn't find much info on this either. Dr. Emory told me that UCLA has its own version of rEEG now. I don't know what that's called but maybe they have more test results on their version. (Then again, even if they did, you might wonder about their subjectivity.) The problem is who is going to pay for a study of the efficacy of rEEG. Certainly not the drug companies who are only interested in promoting their own medications.I decided to try it based on the little I read, the posts here from Dr. Hoffman and the anecdotal reports from someone who has gone through it (she also told me about 2 people she knows who got great results). The process makes sense to me intuitively and I'm so tired of just trying different things randomly. I decided that all of these things together were enough for me.
Kara
Posted by ravenstorm on June 23, 2005, at 21:43:39
In reply to Re: rEEG validation » Cairo, posted by KaraS on June 22, 2005, at 3:14:09
Kara-I remember from past posts you being very oppossed to SSRIs (which I can certainly understand!). Will you take an SSRI if the rEEG recommends it?
Posted by KaraS on June 24, 2005, at 3:52:09
In reply to Re: rEEG validation, posted by ravenstorm on June 23, 2005, at 21:43:39
> Kara-I remember from past posts you being very oppossed to SSRIs (which I can certainly understand!). Will you take an SSRI if the rEEG recommends it?
Gee, was it that obvious? I guess I have come across as very opposed to SSRIs. I suppose it's because I have always felt flat and apathetic on them. I think I harbor some anger at all of the time I've wasted trying one after another of them without much luck. Then after I came here, I read so many stories of people with the SSRI apathy and my anger grew.Back to your question, which was a good one. I have thought about the possibility of the rEEG showing an SSRI for me. I think that looking back, the SSRIs gave me incomplete responses. Maybe I needed a mood stabilizer and/or a stimulant and/or something else in addition to them. Maybe if I had been able to tolerate Wellbutrin, the combination would have been good and I wouldn't have such little respect for the SSRIs now. So I guess the answer to your question is that yes I would be willing to try an SSRI again but only if some other medications are recommended in combination with it. If only an SSRI is indicated for me, then I wouldn't bother and I'd have lost all respect for the rEEG process.
Kara
Posted by ravenstorm on June 24, 2005, at 8:21:30
In reply to Re: rEEG validation » ravenstorm, posted by KaraS on June 24, 2005, at 3:52:09
Keep us posted. I have my fingers crossed for you. When are you getting the rEEG done?
Posted by KaraS on June 24, 2005, at 19:22:17
In reply to Re: rEEG validation, posted by ravenstorm on June 24, 2005, at 8:21:30
> Keep us posted. I have my fingers crossed for you. When are you getting the rEEG done?
I'm still trying to get my blood test results transferred over to Dr. Emory's office. The clinic I went to previously has been negligent in sending out my results. Once Dr. E's office has this info, then they'll schedule the rEEG for me. I might have to get the tests redone because of the noncooperative clinic but that would mean paying $500 out of pocket that I don't have. GRRRRRRR! I'm very frustrated right now.
Thanks for your support. I'll definitely keep you posted.
K
Posted by ravenstorm on July 18, 2005, at 20:55:45
In reply to Re: rEEG validation » ravenstorm, posted by KaraS on June 24, 2005, at 19:22:17
Well, I got an rEEG and got the results today. Feel like I wasted a lot of money and time and am now off all my meds.
I contacted CNS response and they put me in touch with this guy in Chicago who has just been a horrendous pain in the *ss. I assumed he was a psychiatrist or neurologist or someone who does EEGS. Nope. But thats another story. He just made everything horrible and difficult.
I finally got the rEEG done no thanks to him. I actually was off all medications for nearly a month because I didn't want a lot of withdrawal effects showing up on the rEEG. Unfortunately, I started having about seven hour long panic attacks everynight about two weeks out from stopping meds and so started taking Kava Kava. At first that was like a God send, but after the first week, I was so tired I could barely function. I also reallize in retrospect it made me really depressed but I kept taking it until two days before the test (thats how long they said I could take it until) because I was still so traumatized by what had happened the previous week. Well the day of the test I was still totallly out of it from the Kava. I really think it affected my results, but they don't seem to think herbs do much and weren't concerned when I indicated I felt like I was nearly falling asleep during the test.
Anyway, my results are a total bust. Lots of medications recommended that have not worked for me or that make me worse or that are intolerable. Worse yet, the doctor who then consulted with my pdoc (Dr. Hamlin Emory--I believe this is who you are seeing Kara)came up with some recommendations even though they were not indicated by matching anything in the data base. AND for him to do that when he hadn't even talked to me about my med history just stuns me. I don't know why CNS response referred me to the guy I went to in Chicago who I told my history to and had to pay a consult fee to when they had already decided that DR. Emory would consult with my pdoc WITHOUT EVER TAKING MY HISTORY.
So, despite the fact that I didn't rate an "S" for any of the mood stabilizers, he said based on what my rEEG looked like I should take neurontin and trileptal(Again, even though they don't match anything in the data base which I thought was the whole point of this freakin' test) and then add an activating AD like WB or desipramine.
Uhh, yeah. This is where a med history might have come in real handy for him. 1)took neurontin, made me real depressed and literally so tired could not get off the coach. Tried to say something about this during the conference call. He wasn't really listening
2)WB made me insane with anxiety. It took two freakin' months to get anywhere close to back to my normal level of horrible anxiety after that little trip to hell. Oh and did I mention that I was put on the neurontin to try to cope with the WB anxiety. So, I've already been on two of the three meds he would like me to take and it was a total bust.
3)Anything with norepenephrine makes me anxious, irritable and angry: remeron, WB etc etc but that is pretty much what was recommended for me in terms of ADs.
4)recommended both lorazapam and Klonopin, both of which I have paradoxical reactions to.
THIS WAS MY LAST RESORT. I CAN'T PLAY RUSSIAN ROULETTE WITH THESE MEDS ANY LONGER.
I AM CRUSHED.
Posted by 4WD on July 18, 2005, at 22:29:16
In reply to Re: got an rEEG, posted by ravenstorm on July 18, 2005, at 20:55:45
> Well, I got an rEEG and got the results today. Feel like I wasted a lot of money and time and am now off all my meds.
>
> I contacted CNS response and they put me in touch with this guy in Chicago who has just been a horrendous pain in the *ss. I assumed he was a psychiatrist or neurologist or someone who does EEGS. Nope. But thats another story. He just made everything horrible and difficult.
>
> I finally got the rEEG done no thanks to him. I actually was off all medications for nearly a month because I didn't want a lot of withdrawal effects showing up on the rEEG. Unfortunately, I started having about seven hour long panic attacks everynight about two weeks out from stopping meds and so started taking Kava Kava. At first that was like a God send, but after the first week, I was so tired I could barely function. I also reallize in retrospect it made me really depressed but I kept taking it until two days before the test (thats how long they said I could take it until) because I was still so traumatized by what had happened the previous week. Well the day of the test I was still totallly out of it from the Kava. I really think it affected my results, but they don't seem to think herbs do much and weren't concerned when I indicated I felt like I was nearly falling asleep during the test.
>
> Anyway, my results are a total bust. Lots of medications recommended that have not worked for me or that make me worse or that are intolerable. Worse yet, the doctor who then consulted with my pdoc (Dr. Hamlin Emory--I believe this is who you are seeing Kara)came up with some recommendations even though they were not indicated by matching anything in the data base. AND for him to do that when he hadn't even talked to me about my med history just stuns me. I don't know why CNS response referred me to the guy I went to in Chicago who I told my history to and had to pay a consult fee to when they had already decided that DR. Emory would consult with my pdoc WITHOUT EVER TAKING MY HISTORY.
>
> So, despite the fact that I didn't rate an "S" for any of the mood stabilizers, he said based on what my rEEG looked like I should take neurontin and trileptal(Again, even though they don't match anything in the data base which I thought was the whole point of this freakin' test) and then add an activating AD like WB or desipramine.
>
> Uhh, yeah. This is where a med history might have come in real handy for him. 1)took neurontin, made me real depressed and literally so tired could not get off the coach. Tried to say something about this during the conference call. He wasn't really listening
>
> 2)WB made me insane with anxiety. It took two freakin' months to get anywhere close to back to my normal level of horrible anxiety after that little trip to hell. Oh and did I mention that I was put on the neurontin to try to cope with the WB anxiety. So, I've already been on two of the three meds he would like me to take and it was a total bust.
>
> 3)Anything with norepenephrine makes me anxious, irritable and angry: remeron, WB etc etc but that is pretty much what was recommended for me in terms of ADs.
>
> 4)recommended both lorazapam and Klonopin, both of which I have paradoxical reactions to.
>
> THIS WAS MY LAST RESORT. I CAN'T PLAY RUSSIAN ROULETTE WITH THESE MEDS ANY LONGER.
>
> I AM CRUSHED.
>Ravenstorm
I am so sorry. I know how it is to get your hopes up so high and then have them crushed. And I understand exactly how you feel about the Russian Roulette thing. It really is a crapshoot.
I wish there was something I could say that would make you feel better but I can't think of anything. I can tell you to hang in there and all that but I'm sure you've heard it before. Just know that we all out here care about you and feel for you. If nothing else, you've given your brain a break from meds. Maybe now it might respond better to something that worked fairly well in the past?
I think I must have a similar chemistry to you. Wellbutrin made me more anxious as did nortriptyline. And I had paradoxical reaction to ATivan as well. Right now I'm limping along on Celexa 10mg which works a bit for depression but not for anxiety. So I take Klonopin, as little as I can get by with.
Please do try to hang on. We care about you.
Marsha
Posted by Phillipa on July 18, 2005, at 23:01:39
In reply to Re: got an rEEG » ravenstorm, posted by 4WD on July 18, 2005, at 22:29:16
Oh Great! I have a consult at the Washington DC Taste and Smell Center next month. Means a lot of travel and money. Supposed to be the best. I t seems that the more specialized the doctor the worse results. I'm so sorry about your tests. I hope this doesn't happen to me but I've already been to Wake Forrest Taste and Smell and I'm afraid the same thing will happen here. Chemist said not to go. Fondly, Phillipa
Posted by KaraS on July 19, 2005, at 1:56:59
In reply to Re: got an rEEG, posted by ravenstorm on July 18, 2005, at 20:55:45
Hi ravenstorm,
I'm so sorry to hear that this didn't work out for you. I do know that the rEEG is supposed to show what would be good for your brain - but that it can't say how your body will react to the medication. Because of that, it's not surprising that it would recommend medications that you coudn't tolerate.
Ironically, I had the rEEG last Friday and will be meeting with Dr. Emory tomorrow morning. I know that Dr. Emory hadn't wanted to talk about my history of medications before the test. I'm assuming that tomorrow we'll discuss that as it relates to my results.
My eyes are really tired from an exam today so I don't have the focus to thoroughly reply to your post tonight.
I'll talk to you more about it tomorrow after my appointment. I'm feeling less hopeful though, I can tell you that...
Kara
Posted by Phillipa on July 19, 2005, at 17:16:33
In reply to Re: got an rEEG, posted by Phillipa on July 18, 2005, at 23:01:39
Kara Good luck! Please let us know how it goes. I'm starting to wonder about all these sophisticated tests and specialty centers. Fondly, Phillipa
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