Posted by KaraS on March 12, 2005, at 18:36:53
In reply to RE: CES, Neurontin and selegiline » KaraS, posted by Elroy on March 12, 2005, at 17:16:17
Elroy,
Sounds like you're on the right path with all of this. Hope that your latest cortisol reading is really low.
The Lyrica does sound amazing. Hopefully it will be released in the US soon. I couldn't tolerate Neurontin at all but maybe I'd have better success with this one. I'd love to have another option for anxiety control. My fingers are crossed.
Take care,
Kara
> Kara,
>
> RE: "I think that you have been trying too many different things at once. It's too hard to know what is causing what and, in the long-term what is helping. Since your primary problems are anxiety and neuropathy (due to increased cortisol), then it makes sense to temporarily put the selegiline aside.... "
>
> And I think that you hit that nail square on the head! That is exactly whathas hit me just in the last couple of days. I have three primary problems (and some secondary ones that I believe were directly caused by those primary three). And I also know that the three primary problems are high cortisol, high anxiety, and severe neuropathy type pains. And I know that they "feed off of each other", so - in the case of those three - it IS imperative that I work on all three concurrently (i.e., if I just worked on getting the cortisol levels down, well, the anxiety and the pain is working just as hard at jacking the cortisol levels right back up, etc., etc.).
>
> So the simultaneous approach was correct... but I got too carried away with it. Because my psych doc (who is pretty good, BTW) kept looking for an AD to prescribe, I got caught up in feeling that I needed to do that too. And as I read what was going on, it seemed clearly more like a dopamine deficiency problem - if there was one - than a serotonin or norepinephrine problem. Therefore the search for
> something in that direction and the discovery of deprenyl (selegiline) and all the research in that direction.
>
> I am glad that I did that research as it may very well be something that I use further down the road as part of the "finishing touches" (and maybe that research has beeb helpful to people on this board maybe)... but the fact is that the depression that I have had came much later than the anxiety and has always been much less severe than the anxiety (by a factor of at least ten!) and that the depression was always orietned towards being depressed about my condition, not a generic depression.
>
> So why get caught up in addressing one of the secondary problems (that might go away on its own once the three primaries are corrected... or can be dealt with separately as the more minor issue if it doesn't go away after that)???
>
> Good question.
>
> Just got caught up in the "simultaneous approach strategy" I guess.
>
> But, yes, I have decided to shelve the deprenyl approach for now and force myself to focus strictly on The Big Three.
>
> I have cortisol results from tests done in late February coming back soon (should have been in Friday but my endo's secretary didn't call back), so I am interested in how those levels were. I have been successful in getting those levels moving downward since about October, so hopeful that trend continues. The first decreases occurred when my psych doc put me on Ativan (about a 10 - 15% drop) and then moved me to Xanax (about another 10 - 15% drop on top of that). That was like late Sept (Ativan) and early November (Xanax). That tells me that there's definitely a link between the anxiety and cortisol, but not sure which is the cart and which is the horse! Drops that have occurred since then have been even more drastic... and I believe afre due to the fact that I have researched, identified and been taking mega doses of identified anti-cortisol compounds.
>
> I have also just started the neurotin regimen... only since Wednesday. So far fairly dramatic results in the neuropathy and even with the anxiety. I think that due to higher cortisol levels that there was always some ongonig background anxiety present. So the Xanax was hitting about 75% of the anxiety (the Ativan was hitting about 50%). I thought I'd probably have to hit up the psych doc for stronger Xanax (XR version), but the neurotin has now covered about 20% of that background anxiety - often even the full 25%. I'd even consider weaning off of the Xanax completely, but it (Xanax) helps significantly with my tinnitus - YES, it is part-and-parcel of this whole problem... one of several symptoms that popped up out of nowehre within 2 - 3 weeks of the onset of the severe anxiety in mid June of 2004 (neuropathy pains, severely icy cold pains inside feet additional to surface neuropathy pains of hands and feet, prostatitis or severe UTI symptoms, complete loss of libido, complete erectile dysfunction, testosterone production plummeted to way below normal levels, tinnitus, extreme fatigue, lack of motivation, yet severe agitation from anxiety, panic attacks, sleeping problems.... ). I went from NONE of those problems in early/mid June to ALL of those problems by early July! And then the high cortisol problem finally discovered (only at my repeated urging by the way) in early September... but I'm sure it existed back in June - and maybe for a month or two before that if the cortisol has been causing this. Or did the severe anxiety also cause the ultra high cortisol (my levels in early Sept were almost SIX times the normal range max levels) and then the ultra high cortisol whacked those other systems???
>
> Anyway, the neurontin has suddenly become a Big Player in my simultaneous strategy approach... and I cannot wait for Lyrica to be released on the market. If you get a chance, check out the user ratings for it at RemedyFind.com (and the first set oflistings are actually from Fibro patients as there isn;t a separate neuropathy category - these are listings from non USA citizens as still not released onto market here even though approved by FDA last Sept and used in Europe for several months at least)
>
> http://www.remedyfind.com/rem.asp?ID=7887
> http://www.remedyfind.com/rem.asp?ID=7893
>
> Also postings on this board can be located.
>
> Might want to give it a try when it get released??? Supposed to be more potent at lower doses with less tolerance effect and much more minimal side effects (BTW, I have had some moderate sedation effect from the neurontin as the only side effect and that frequently goes away after the first week or two).....
>
>
>
> > Hi Elroy,
> >
> > Thanks for explaining further about the CES. I understand better now. If it can, in fact, balance neurotransmitters as Dr. Braverman claims, then it would seem to be a good investment. I would really like to hear how Franco Neuro is doing on Dr. Braverman's program. Hopefully he'll post his progress in the near future.
> >
> > I think that you have been trying too many different things at once. It's too hard to know what is causing what and, in the long-term what is helping. Since your primary problems are anxiety and neuropathy (due to increased cortisol), then it makes sense to temporarily put the selegiline aside. You can then figure out what the Neurontin is doing on its own. As you know, medications change in their side effects as your body adjusts to them so the response you get to Neurontin could be very different a month from now than the first couple of days on it.
> >
> > I tried Neurontin many years ago to help with sleep. I don't remember it all that well except that it made me feel really sick. I only took a small amount for a night or two and never tried it again.
> >
> > At any rate, it sounds like you're on the right path since your cortisol levels have gone down.
> >
> > Take care,
> > Kara
> >
> >
> > > No, just to make sure that there's no misunderstanding, what the sales rep advised me - and the online literature has confirmed - is that the lower setting is for therapeutic response to anxiety (and insomnia) and that the higher setting is for depression and balancing the brain's neurotransmitters.
> > >
> > > What I have found with my limited use so far (like three days with trying to hit twice a day w/ higher setting for 30 minutes each and one 30 minute session with lower setting at bedtime) is as follows:
> > >
> > > My frustration is with the lower setting in that even with this second unit they sent that I don't feel it working. I put it on my wife and turned it up slightly and she felt it immediately. We did several runs with it and she couldn't see when I was turning it up or not and shje clearly felt it every time. I also put the electrodes on my tongue and at full power could then very, very faintly make out pulses! I don't know if my nerves have become really desensitized from my very high cortisol levels? Or, I should say formerly very high levels as I have been successful to getting those levels down to where they are just above the maximum end of the "normal reference range". Back in September my levels were almost SIX times the max of that range!
> > >
> > > Anyway, so far (three days?) I have noticed that the higher range of the CES does seem to basically have a calming effect, a smoothing out effect. Now I am using it while also on Xanax and Neutrontin so it's not like there's a major anxiety crisis for it to address at this point. As to what the lower range might be doing, I'm just not sure it's having that much of an effect with me or not.
> > >
> > > What I do look at as being possibly beneficial - and worth it no matter what may turn out in the other areas - is that if it does have the positive effect Dr. Braverman talks about in balancing the brain's neurotransmitters (???).
> > >
> > > Also....
> > >
> > > At this point, not really sure what I'm going to do with the Selegiline. I had a less than optimal day with the neurontin today - after having a couple of great days. On those "great days" I had almost no neuropathy type pain that I could notice, my feet - which are usally icy cold to the point of being painful - actually felt okay, and even felt warm at times! And, even more amazing, there was like no anxiety at all.. all day long! And slept great.
> > >
> > > Then today I had like some background jitteriness type anxiety for most of the day. And it seemed like once it started that I began noticing some slight return of the neuropathy symptoms and some coldness to my feet again.
> > >
> > > Hmmm.... what was the deal, what was going on differently?
> > >
> > > And my wife then made an interesting observation.
> > >
> > > She pointed out that from the start of all this (which has only been since June of 2004), that my PRIMARY problems have been elevated cortisol (and the physical/emotional/mental problems caused by same), the neuropathy type pains (more and more believed to have been developed by the high cortisol and "kept alive" by the anxiety), and the severely severe anxiety.... and that any depression has always been much milder and seems to simply exist from being depressed at all the crap I'm going through!
> > >
> > > When she mentioned that it hit me that the first day on the neurontin I had not only the pain relief but also the complete lack of anxiety... and that there was ZERO depression. Now I can't claim that first day to any effect of the Selegiline / DLPA combo as that was the day before I started it.
> > >
> > > Now after having been on the Selegiline / DLPA a couple of days I have a "down day". Granted absolutely NO depression, but a naggling return of a touch of anxiety - AND the touch of neuropathy pains....
> > >
> > > Hmmm.....
> > >
> > > Coincidence?
> > >
> > > Or is the Selegiline combo creating just enough extra energy (which to someone that is sensitive in that direction then turns into anxiety)? And that extra "chemically induced" anxiety just enough to slightly overpower the neurontin effects?
> > >
> > > Boy, I don't know. Was today just coincidentally a "down day". After all, I have been on neither the neurontin or the selegiline combo long enough to have their primary effects build up fully.
> > >
> > > But then if the selegiline IS somehow being counter-effective to the neurontin - especially as experienced in the initial couple days - well, maybe continuing the selegiline experiment at this point is being counterproductive.
> > >
> > > As my wife pointed out, my primary problem has always been severe anxiety as versus depression. In fact, from June '04 until about late October of '04 it was strictly anxiety with depression gradually entering the picture as it seemed more and more like the med docs and the psy docs just didn't know for sure what was going on....
> > >
> > >
> > >
> > > > Hi Elroy,
> > > >
> > > > Thanks for the update. If I'm understanding you correctly, you're saying that the CES device was very helpful for depression as well as anxiety at the higher setting. (I'm not sure why you would want to use the lower setting if it only works on anxiety?)
> > > >
> > > > I'm glad to hear that you're doing well on selegiline. There have been many posters here who have had fantastic results with it. I wanted to try it myself but my anxiety has been so severe and I've been afraid that would make it worse. I haven't been able to tolerate Neurontin so that's not a solution for me. I am currently taking 25 mg. of doxepin which is helping immensely but I probably shouldn't mix it with selegiline. OTOH, Ktemene, who posts here periodically, uses selegiline + DLPA along with Remeron. If that's safe, then maybe the doxepin would be as well.
> > > >
> > > > I'll be curious to see if you decide to keep the CES machine. I wonder if it would work well enough on its own (for both anxiety and depression) if used regularly over a significant period of time. I have the Braverman book at home now. I've only skimmed it so far. Haven't taken the tests yet.
> > > >
> > > > Good luck tapering off of the Xanax. Please keep up posted.
> > > >
> > > > K
> > > >
> > > >
> > > > > Kara,
> > > > >
> > > > > Had to send the first unit back as it wasn't working in the lower frequency setting. Have had the replacement unit for just a couple days. I note that the higher freq range seems to work fairly effectively for depression... also had (usually) a calming effect. My problem with the lower freq range is that I simply don't actually "feel" the pulses (apparently nerves have become that desensitized at those loer ranges??). So I tend to develop a mentality that it's not doing anything (that lower freq range is for anxiety and insomnia).
> > > > >
> > > > > Good news is that I fonally weas able to get started on the Selegiline and DPLA / B6 regimen... and also on neurotin for my neuropathy type pains.
> > > > >
> > > > > It has been one day and the difference has been simply amazing. I believe that the Neurontin is also having a tremendously positive effect on my anxiety and that I will probably end up weaning off of the Xanax soon....
> > > > >
> > > > > I am now debating whether or not I will keep the CES device or not (I can turn it end up to 30 days with the loss of a 15% re0sticking fee)... But then it supposedly is also very good at balancing one's brain neurotransmitters so I might end up keeping it just for that aspect. Am going to use it for another couple weeks just to see if it seems to be making a difference with my combination of Segeline (etc) and the neurontin.
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > I would say that this is definitely a technology where the effects have to "accumulate" over a period of time.
> > > > >
> > > > > > Elroy,
> > > > > >
> > > > > > Sorry to change the subject again but I'm really curious to find out how you've been doing with the CES device. Any luck or is it too early to tell?
> > > > > >
> > > > > > Kara
> > > > >
> > > > >
> > > >
> > > >
> > >
> > >
> >
> >
>
>
poster:KaraS
thread:452259
URL: http://www.dr-bob.org/babble/alter/20050225/msgs/470198.html