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Posted by tealady on April 8, 2005, at 17:27:35
In reply to RE: DLPA (etc) » tealady, posted by Elroy on April 8, 2005, at 17:20:28
Sounds good in that case:-) I'll look at it
Thanks
Posted by world citizen on April 8, 2005, at 18:00:04
In reply to RE: DLPA (etc) » world citizen » KaraS, posted by tealady on April 8, 2005, at 17:08:59
Hey Tealady,How are you holding up with your anxiety? If your fear were a teacher what do you think it would be trying to teach you? That question was rather Christiane Northrup-ish, she's one of my favorite MD authors. There's a book she wrote called "Women's Bodies, Women's Wisdom" that utilizes the approach that many illnesses are a way for the inner self to communicate it's needs to the mind. In my case since,according to the Baha'i Writings, the liver is very adversely affected by anger it appears I need to work on forgiveness and acceptance when things "contrary to (my) wishes occur.
Thank you so much for your concern. Im happy to announce (if I haven't already, it's hard to keep track of all the posts) that my abdominal sonogram came back unbearably normal! YIPPEEEEE! Now that I know that there isn't any cancer currently residing in my liver I'm certain that I can avoid that uninvited guest! I agree with you also that the stress I was under was undermining my immunce system hence the increased viral load. I've "settled" and am curently sending money to the crediors that I've amassed in the last two years. I've decided that some of them will have to wait as I need to replace the car that I lost in my toxic mold travail.On a different note, I sure hope Elroy's symptoms are caused by that kidney lesion! What a blessing it would be to him not to have all that crap (that's a very technical medical term!) to deal with. My prayers are still with him!!!!!!
World Citizen!ps I would have done a spell-check on this but that Mirium Webster thing they have for this site takes WAYYYY too long to load! (apparently I need to also develop more patience! Sigh, one lifetime and SOOOO many virtues to aquire!)
Posted by tealady on April 8, 2005, at 19:19:23
In reply to RE: DLPA (etc), posted by world citizen on April 8, 2005, at 18:00:04
>
> Hey Tealady,
>
> How are you holding up with your anxiety?Ok I guess. I think I'll try to retrain my breathing..or something along those lines.. based on retraining any muscles after they have been weakened (as in most of my body:-)
Just reading this thread as a doc offered me segeline about 3 or 4 years ago...and I guess I could still get it. At the time I thought something was contradictory and others things indicated it would help. I thought I'd wait and see what others found on using it, as I'd been a guinea pig way too much. Now I'm still as confused as ever. It is something I may try though.
If your fear were a teacher what do you think it would be trying to teach you? That question was rather Christiane Northrup-ish, she's one of my favorite MD authors. There's a book she wrote called "Women's Bodies, Women's Wisdom" that utilizes the approach that many illnesses are a way for the inner self to communicate it's needs to the mind.
good point
In my case since,according to the Baha'i Writings, the liver is very adversely affected by anger it appears I need to work on forgiveness and acceptance when things "contrary to (my) wishes occur.
> Thank you so much for your concern. Im happy to announce (if I haven't already, it's hard to keep track of all the posts) that my abdominal sonogram came back unbearably normal! YIPPEEEEE! Now that I know that there isn't any cancer currently residing in my liver I'm certain that I can avoid that uninvited guest! I agree with you also that the stress I was under was undermining my immunce system hence the increased viral load. I've "settled" and am curently sending money to the crediors that I've amassed in the last two years. I've decided that some of them will have to wait as I need to replace the car that I lost in my toxic mold travail.
Glad to hear you've settled and even better the no cancer!
>
> On a different note, I sure hope Elroy's symptoms are caused by that kidney lesion! What a blessing it would be to him not to have all that crap (that's a very technical medical term!) to deal with. My prayers are still with him!!!!!!
> World Citizen!
>I sure hope they can fix him up too...was it a kidney lesion or adrenal lesion? ..I have a poor memory, and I've only been reading these threads today too! Either way ..hope it can be fixed..or even better goes away of its own accord!
> ps I would have done a spell-check on this but that Mirium Webster thing they have for this site takes WAYYYY too long to load! (apparently I need to also develop more patience! Sigh, one lifetime and SOOOO many virtues to aquire!)
nah patience with machine tools is not exactly a virtue :-) Just use the tool if it works, benefits and it's user friendly ..if not, forget it or whatever...it sure ain't going to worry the computer or the software. The main thing is not to get worked up about it (as I'm sure ya know...:-)). I haven't even tried it and can't be bothered at present anyway :-)
tea
Posted by tealady on April 8, 2005, at 21:08:52
In reply to RE: Segeline (Deprenyl) and phenyalanine » Larry Hoover, posted by Elroy on March 26, 2005, at 13:42:33
> Well, what I have found - with the Dr. Bib protocol or whatever - is that the DLPA or even LPA tends to make my anxiety and certain physical symptoms qute worse. Physical symptoms such as a UTI or semi-prostatitis type pain. My urologist thinks that I have an over-production of adrenaline (NE and so forth) and that it is not only causing the severe anxiety, but also the flare-ups of the UTI type symptoms and some other "evil effects"... and that any supplement that I take that greatly increases NE (etc.) just worsenes things.
>
> Interesting....
>
> And, yes, I caught those same errors on the Dr. Bib web site. With SAMe - and I also believe with TMG - is pretty necessary to take th B vites...
>
> Interestingly, the Deprenyl by itself (5 mg dose) did NOT have that same effect, only when I took it with the DLPA or even just the LPA... so then I wondered about just the "D" version? I wonder if it would have lessened effects on increasing NE, etc. as (I believe) it is mostly converting to PEA???
>
> Then I got to thinking....
>
> My primary problem is ANXIETY - not depression. And here I am getting caught up - like most pscyh docs - in looking at ADs to address an anxiety problem. I actually have very little depression - other than the ocasional depression at being ticked off at my continuing physical / emotional state!
>
> I had a somewhat "unique" situation occur where I had developed anxiety problems (after several years of stress related to work stress in a whistleblower environment and a subsequent whistleblower lawsuit) for about 18 months or so (July 2002 to early February 2004) and then everything cleared up. The anxiety was mostly on-again and off-again and mild to moderate with occasionals ever episode - but even then not extremely so.
>
> And then in June of 2004 the anxiety returned much, much worse and remained constant - and seemed to just worsen week by week. Within just 2 - 3 weeks I had the following physical symptoms quickly appear - and with severe ysmptoms almost immediately, no "build up": hypogonadism, UTI or prostatitis type pains (but no infection ever found), tinnitus, and peripheral neuropathy type pains in hands and (especially) feet - plus some other minor symptoms. No significant problems in any of those areas prior to then.
>
> No depression (other than the occasional normal depression at my continuing state of condition), but severe on-going anxiety.
>
> Last September I was found to have extremely high cortisol levels but anti-cortisol supplements have done a nice job in bringing those levels back down (still elevated, but now just above normal). In September my cortisol levels were almost SIX times the maximum end of the normal reference range! Unknown what they were in June (took a while to get an ENDO to do the desired testing, but I suspect was even much higher. Was some initial concerns as to having Cushing's, but that was eliminated with numerous advanced testings.
>
> Levels stayed high until late September when I was put on 1st anti-anxiety med (Ativan) when they came down a little bit. When I was switched over to Xanax XR they came down another noticeable chunk (but still prety high). The big ddecreases started after a regimen of taking strong anti-cortisol products (only after Cushing's was eliminated).
>
> Interestingly, during the testing process, a small "lesion" (i.e., tumor) was found INSIDE my left adrenal gland. Cushing's can - of course - be caused by an adrenal gland tumor (though usually it is a pituitary gland tumor), but once Cushing's was eliminated the adrenal gland tumor was declared "incidental" and "probably not biologically active".
>
> Now a new PCP doc that I recently hooked up with has expressed some strong reservations about that adrenal gland tumor. He pointed out that being inside the gland that it is probably affecting the adrenaline secretion as that's where it occurs in the adrenal gland, in the medulla or inner layer. His suspicions - at this point - is that the adrenal gland tumor may have caused the severe anxiety and some of the physical symptoms and somewhere along the way the HPAT Axis obviously broke down and the lowered testosterone production and the the super high cortisol output was part of the body's reaction to that...
>
> So.....
>
> A whole new round of (different) testing coming up. My PCP seems to think that the adrenal gand needs to come out and that then the anxiety - and subsequently a lot of the physical symptoms - will clear up. Not as convinced that theHPAT Axis will then achieve a full "re-set" or not after that...
>
> ElroyHi Elroy again, good luck with all of this.
A book I have says this on pheochronocytomas, but I think you probably know all of this"PHEOCHROMOCYTOMA
These tumors make catecholamines, just like the normal medulla, except in an unregulated fashion. Patients with pheochromocytomas typically have a plethora of symptoms, as might be expected from such a wide-ranging hormonal system. Paroxysmal (sudden outburst) hypertension, tachycardia, headache, episodes of sweating, anxiousness, tremor, and glucose intolerance usually dominate the clinical findings. The key to the diagnosis of this disorder is a careful history, evidence on physical examination of excessive adrenergic tone, and laboratory detection of increased amounts of urinary catecholamines and their metabolites. When chemical evaluation of the urinary metabolites confirms the presence of a pheochromocytoma, it is often possible to localize the tumor to one or the other adrenal gland and resect the tumor. Rarely, both glands will be affected and necessitate bilateral adrenalectomy. Such patients must subsequently receive glucocorticoid and mineralocorticoid replacement. Interestingly, no therapy is routinely given to replace the adrenal medullary function. It is not clear whether these individuals react less well to external stimuli that might trigger the fight-or-flight response."also "catecholamines-dopa, dopamine, norepinephrine, and epinephrine-are all made in the adrenal medulla. Norepinephrine is found in many other somatic tissues in amounts that roughly parallel the extent of sympathetic innervation of the tissue. In other words, the norepinephrine in these other tissues is not made there but is derived from the sympathetic nerve endings in them. Epinephrine, the principal product of the adrenal medulla, is made only in the adrenal medulla. "
my understanding is that adrenaline=epinephrine, noradrenaline=norepinphrine,
(the latter terms being US terms and this text is a US book)Hope all goes as smoothly and as well as possible with all of this for you. The adrenals still seem to be a bit of a mystery to medicine as far as I can see unfortunately.
tea
Posted by tealady on April 8, 2005, at 23:08:12
In reply to RE: Segeline (Deprenyl) and phenyalanine » Larry Hoover, posted by Elroy on March 27, 2005, at 19:25:21
> Here's how this how package seemed to go down:
>
> 1. Realize something's terribly wrong - physically as well as emotionally.
> 2. Go to regular PCP (who sells nutritional supplements on side and has a rehab work-out center attached to his offices). He wants "full physical done" (which consists of just very basic blood work).
> 3. Regular PP comes back with diagnosis that I am just "getting older" (early 50s) and need to "eat better", "supplement my diet" and "exercise more" (note... I already was doing ALL three).
> 4. When I insisted on more testing, he checked again and found that I had "dismally low" testosterone levels (a month before all of this started - with the initial onslaught of bad anxiety which just kept getting more and more severe). Without checking any other particulars, I was put on a minimum level dosage of AndroGel.
> 5. Insisted on more testing and was referred to a (local) Endo. He wrote up a bunch of tests and I literally had to beg to get cortisol testing added to the work order (I actually thought that it might be adrenal fatigue). Instead it came back as extremely elevated cortisol levels. Local endo was ecstatic as he thought that it was Cushings for sure (based on ultra high levels and one older fashioned CRH Test).
> 6. Urologist that I was seeing was upset that no one was looking at adrenal glands (the local endo was just sure it was a pituitary tumor based Cushings). So local Endo had CT Scan done and found a 2.1 x 1.8 cm in left adrenal gland).
> 7. Urologist was convinced that adrenal gland lesion was responsible for Cushings but local endo remained convinced it was pituitary.
> 8. At that I transfered to a major medical clinic endo. He had more advanced testing conducted and results came back that it wasn't Cushings. So therefore there was no pit tumor OR adrenal tumor DIRECTLY causing the super high cortisol... so ruled that the adrenal lesion was just "incidental" and "not biologically active"...
> 9. Now new PCP has re-opened the question, basically saying, "hey, we know that the adrenal gland lesion isn't directly causing the cortisol elevation, and apparently isn't malignant... but we also know that it is inside the adrenal gland and obviously likely to be affecting the medulla of the gland - and the medulla is what controls the secretion of adrenaline which - in excess - can cause severe anxiety... so how about we look further into this possibility???"...
>
> And, BINGO, suddenly I'm getting new tests scheduled that are clearly designed to look at things like a more detailed CT Scan, more blood work, some other procedures... all designed to see if the adrenal gland (tumor) might be secreting abnormal levels of adrenaline (and related substances).
>
> On one hand I really, really hope that's the case and that - like with Cushing's - a surgical intervention can remove the anxiety and these various physical symptoms. On the other hand, I'll be ticked that this could have potentially happened as far back as late September and would have saved me further months of additional pains and agony....
>Hi again, just reading thru a few more posts. I thik you are fairly 'typical' in your treatment, although most probably don't get that far. Keep perservering. Hope they find something..but I tend to also think like your new doc..like most adrenal adenomas secrete something I thought. I recall reading somewhere that they even have differing histology depending on what they secrete..I think, but I also recall reading that that is not looked at much as yet. Pity, as you'd think they may be able to tell from an FNA?..But I don't know anything about this and my memory is poor.
The main concern for the medical estrablishment I guess was if it is was cancerous or not though.http://www.hormones.gr/pdf/1_2003/04linos.pdf
How did you lower your cortisol, and did that help relieve the anxiety at all..or increase it?
Personally I find adding cortisol helps relieve anxiety and stress with me, probably as I may produce the adranaline/noradrenaline etc when under stress ..but not enough cortisol to counter it. Or perhaps my CBG is just too low.. much too confusing:-)
tea
Posted by tealady on April 8, 2005, at 23:26:50
In reply to RE: PEA » Larry Hoover, posted by Elroy on March 28, 2005, at 16:47:48
>> http://www.vitaminmen.com/cgi-bin/search.cgi?action=display&ID=1002
> Pure D-Phenylalanine - (FTH Nutraceuticals) 500mg, 50 caps - $34.95
>
> http://www.iherb.com/dphenylalanine1.html
> Best D-Phenylalanine, Doctor's Best, 500 mg, 60 Veggie Caps - $10.00
>
> Anyone know of any other sources or have any experience with either of those two manufacturers (Doctor's Best or FTH Nutraceuticals)?
haven't tried it..but its easy to open a capsule up and onlyt take 1/3 cap usually (fishing for any repilies as well as stating the obvious) ..you wouldn't have to be too precise
Posted by tealady on April 9, 2005, at 5:19:55
In reply to Re: FYI, that's another Dr. Bob (nm), posted by Dr. Bob on March 29, 2005, at 7:02:01
That's reassuring as he's dead http://www.restoreunity.org/life_partner.htm
BTW I like the new piccie of you
Posted by Larry Hoover on April 9, 2005, at 14:04:24
In reply to RE: Segeline (Deprenyl) and phenyalanine » Larry Hoover, posted by Elroy on March 28, 2005, at 17:27:25
> Isn't that strange... that one would so desperately want a physical disorder to be identified even if it is something as serious as a tumor causing Cushings or a tumor causing something else such as Pheochromocytoma (back when it was still thought to be Cushing's, I desperately hoped that they'd find a pit or adrenal tumor that was causing the Cushing's... and was almost ecstatic when the adrenal gland tumor was then found, thinking, aha!, this is it... and then crushed when further tests indicated that it wasn't even Cushing's... high cortisol, yes, ultra high cortisol, yep, but not being caused by the adrenal gland tumor putting out too much ACTH which then caused excessive cortisol secretions)....
Sorry, I got busy preparing for a hearing (which I won).
Anyway, it's the way of the medical system. They have this flow. You present with symptoms (SX). The try to diagnose (DX). Only from DX can you get treatment (TX). No DX, no TX. It totally SuX, when you still have major SX.
Lar
Posted by Larry Hoover on April 9, 2005, at 14:22:10
In reply to RE: PEA, posted by gromit on March 28, 2005, at 22:10:19
> > I wouldn't hazard to guess how you'd feel on this stuff, other than buzzy and activated.
>
> Yeah but there is activated like too much caffeine or activated like a reasonable dose of methamphetamine. It's cheap enough to experiment with chocamine though.Remember, that is always the only way to find out, to "do the experiment". Just take observations along the way.
> > If you're after PEA, I don't think you can beat D-phenylalanine. It's the direct precursor, and the enzyme that makes it is readily available. Supply of precursor + active enzyme --> high yield of product.
>
> Ok I can be a little slow sometimes. When taking DLPA you get the precursor and the enzyme, or the enzyme should be abundant in the body already?The enzyme is abundant. It's a form of decarboxylase....it takes the acid part of of the amino acid, leaving it simply an amine.
Phenylalanine could be called phenylethyalaminecarboxylase. When it's "neutered" by the decarboxylase enzyme, it can't turn into dopamine, but it's active in its own right, as phenylethylamine (PEA).
> Maybe this mechanism is broken for me and I can't, ummm, make much PEA. Or maybe this isn't a problem I have at all.
Another experiment.
> Will you take a crack at this next thing if you have time/energy?
>
> Things that make me feel better.
>
> 1. Methamphetamine - I actually used this pretty responsibly after taking too much once.
> 2. Marijuana - I was ridiculous with this for years, helps focus short term after a restart. Always makes me wired.
> 3. Vicodin - Doesn't really help with pain much anymore, helps with focus and AD properties. Always makes me wired.
> 4. Provigil - It was like each bottle I got had a random number of sugar tablets, when it worked it was great.You sound like me, sort of. Pretty close, anyway. I haven't used meth or pot for years and years, though. Provigil did the same to me. Some days, really potent. Other days, nothing.
> Ok it sounds kinda bad, ummm duh, that's why it's called getting high. Still normally people aren't up all night from opiates or bong hits. What could be out of whack here?
>
> Can you think of a supplement combo probably including meds that makes sense for me?You're going to have to experiment in the realm of stuff that works for anxiety.
That's niacinamide (make very sure it's the amide).
Kara takes 250 mg, and that's the right dose for her. You can take 500 mg, up to four times a day, but you will have to find your own dose thresholds.
Magnesium. It can give you diarrhea, so if that happens, lower the dose for a while. Your body will adjust, and then you can increase the dose. You want to take 500 to 1000 mg/day, but you'll probably have to build up to that level (diarrhea).
Fish oil. You gotta have those long chain omega-3s, or all the signalling in your brain is excitatory (via omega-6 arichidonic acid cascade). 5,000 grams/day is a good target for levelling brain hum. You can go much higher, though. And, if you're chronically deficient, you have to take it for close to a year to complete the replenishment of your brain phospholipids. Gradual effect, but very good effect.
Taurine. Has an immediate effect, as it crosses the blood/brain barrier readily. Very similar in both structure and effect to GABA. 1-2 grams, for an acute episode. Some just take 500 mg/day.Siberian ginseng. Very tonic.
St. John's wort. It's an option, if you get good stuff.
Ashwagandha. (Withania somnifera). Also tonic, comes from Ayurvedic medicine.
Korean (red) ginseng. Often adulterated, though. You need to find a reputable source.
Kava kava, for short-term effects.
> I was sorry to hear about your elbow, pain sucks! If I remember you were already dealing with chronic pain from another injury too.
I did physical labour for many years, and I'm paying the price. I was, quite seriously, Hoover the Mover.
Thanks for the concern. Gabapentin has helped dramatically with the nerve pain, although it's making me stupid as hell. Still no surgery date (over 15 months after I broke it).
Lar
Posted by Larry Hoover on April 9, 2005, at 15:35:43
In reply to RE: PEA » gromit, posted by Elroy on March 29, 2005, at 6:44:45
> In primary anxiety states, there is too much "brain circuit transmitting" going on (which is why Xanax, a GABA enhancer, is so effective as GABA tends to calm down that neurotransmitting activity). Also, persons with primary anxiety states tend to have excessive levels of "Catecholamines" (the inter-related neurotransmitters of dopamine, noradrenalin, and adrenalin) in the system already. Therefore (as I quickly came to find out through trial), the selegiline - and especially as combined with DLPA - is not a good protocol for primary anxiety states.
>
> XTrue. Enhancing GABA-ergic function is one of the Holy Grails of pharmaceutical research. However, there is an option. Taurine.
It's already (supposed to be) the most abundant free amino acid in your body, but its synthesis requires pyridoxal-5'-phosphate (P5P), the activated form of B6. Some people have trouble converting B6 to P5P, and some people are just short on B6 altogether. In any case, taking taurine isn't going to hurt you.
Contrary to my earlier assertions that GABA and taurine are virtually identical in structure, save for the acid moiety, I find I have made a mistake.
Taurine is NH2-CH2-CH2-SO3H
GABA is NH2-CH2-CH2-CH2-CO2H
Still, they act very much alike, in the brain. Except taurine does a hell of a lot more.
http://www.thorne.com/altmedrev/fulltext/taurine3-2.html
Now, this review article doesn't reflect more recent research which shows a neuromodulatory effect from taurine.
From a fairly quick review of Pubmed, I've determined that taurine:
a) acts as an agonist at glycine and GABA(A) receptors;
b) induces hippocampal synaptic plasticity and long-term potentiation;
c) is synthesized by dedicated glial and Perkinje cells in specific brain structures, and is released directly into synapses;
d) is taken into neurons by not one by two dedicated taurine transporters;
e) is actively tranpsorted across the blood/brain barrier by dedicatied transporters;
f) can totally inhibit glutamate-induced calcium efflux (effectively cancelling the glutamate excitatory signal);
g) upregulates the gene responsible for GABA synthesis;
h) induces long-term potentiation in cortical tissue via activation of GABA(A) and glycine RS receptors.Taurine does a whole whack of things. They think there might be a taurine receptor (dedicated signal transduction) buried somewhere in all of this. They don't really know what it does, but it's everywhere. It's neuroprotective against oxidative stress. It promotes growth of new brain connections, and strengthens existing ones. It's neuromodulatory, reducing all known excitatory signals.
I wonder what it really does. <Spock eyebrow>
Lar
Posted by Elroy on April 9, 2005, at 21:24:58
In reply to RE: Segeline (Deprenyl) and phenyalanine » Elroy, posted by tealady on April 8, 2005, at 21:08:52
Tea,
Thanks for the info. Pretty much what I had found so far with my research, but still good to know.
I have still not heard anything back from the Endo who is running the specialized Pheo oriented testing. Most of those tests were done not this last week, but the week before that. This last week I had a follow-up contrasting CT Scan done. The previous contrasting CT Scan that found the adrenal tumor was done last September, maybe early October. The tumor at that time was 2.1 x 1.8 cm. No results back - at least as have been relayed to me!
QUOTE:
These tumors make catecholamines, just like the normal medulla, except in an unregulated fashion. Patients with pheochromocytomas typically have a plethora of symptoms, as might be expected from such a wide-ranging hormonal system. Paroxysmal (sudden outburst) hypertension, tachycardia, headache, episodes of sweating, anxiousness, tremor, and glucose intolerance usually dominate the clinical findings...
END QUOTEWell, I have fluctuating BP and heart rate, headaches, "anxiousness" (ha-ha... severe anxiety), termors, and my blood sugar has increased to some degree....
I find that Pheos are a lot like tumors that cause Cushing's... there are actually a LOT more symptoms than are generally recognized my doctors since they only read about the top handful of symptoms....
Study from Italy (1999): Data on 284 patients with pheochromocytoma observed between 1978 and 1997 were collected from 18 Italian Centers through a questionnaire reporting epidemiological, clinical, laboratory, radiological and surgical data - Results: Patients were 53.6% females and 46.4% males. 32 tumors were discovered as incidental adrenal masses. The most frequent referred symptoms were palpitations (58.1%), headache (51.9%), sweating (48.8%) and anxiety (35.3%). Their association was present only in 15.5%. Paroxysmal symptoms were reported in 67.1% and hypertensive in 59.7%. Normal blood pressure (systolic and diastolic) was present both in supine and upright position in 21.1%...
END QUOTENote the last sentence.
Most docs (endos and otherwise) will tell you - quite confidently - that if you are not experiencing severe BP problems that you do NOT have a Pheo tumor. And yet this study of patients with POSITIVE pheo tumors showed that over 1 in 5 had NORMAL blood pressure levels!
Argghhh....
x
x
x
x
>
> Hi Elroy again, good luck with all of this.
> A book I have says this on pheochronocytomas, but I think you probably know all of this
>
> "PHEOCHROMOCYTOMA
> These tumors make catecholamines, just like the normal medulla, except in an unregulated fashion. Patients with pheochromocytomas typically have a plethora of symptoms, as might be expected from such a wide-ranging hormonal system. Paroxysmal (sudden outburst) hypertension, tachycardia, headache, episodes of sweating, anxiousness, tremor, and glucose intolerance usually dominate the clinical findings. The key to the diagnosis of this disorder is a careful history, evidence on physical examination of excessive adrenergic tone, and laboratory detection of increased amounts of urinary catecholamines and their metabolites. When chemical evaluation of the urinary metabolites confirms the presence of a pheochromocytoma, it is often possible to localize the tumor to one or the other adrenal gland and resect the tumor. Rarely, both glands will be affected and necessitate bilateral adrenalectomy. Such patients must subsequently receive glucocorticoid and mineralocorticoid replacement. Interestingly, no therapy is routinely given to replace the adrenal medullary function. It is not clear whether these individuals react less well to external stimuli that might trigger the fight-or-flight response."
>
> also "catecholamines-dopa, dopamine, norepinephrine, and epinephrine-are all made in the adrenal medulla. Norepinephrine is found in many other somatic tissues in amounts that roughly parallel the extent of sympathetic innervation of the tissue. In other words, the norepinephrine in these other tissues is not made there but is derived from the sympathetic nerve endings in them. Epinephrine, the principal product of the adrenal medulla, is made only in the adrenal medulla. "
>
> my understanding is that adrenaline=epinephrine, noradrenaline=norepinphrine,
> (the latter terms being US terms and this text is a US book)
>
> Hope all goes as smoothly and as well as possible with all of this for you. The adrenals still seem to be a bit of a mystery to medicine as far as I can see unfortunately.
>
> tea
>
>
>
>
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>
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>
Posted by Elroy on April 9, 2005, at 21:31:11
In reply to RE: Segeline (Deprenyl) and phenyalanine » Elroy, posted by tealady on April 8, 2005, at 21:08:52
Tea,
More info to previous answer.... info on Pheos and Pheo symptoms from 5 other sites:
QUOTE:
Primary Symptoms for Pheo: Many clinical signs can be present, including paroxysms of hypertension (80%), diaphoresis (71%), palpitation with or without tachycardia (64%), pallor (40%), nausea with or without vomiting (42%), tremor (31%), weakness or exhaustion (28%), nervousness or anxiety (22%), epigastric pain (22%), chest pain (19%), dyspnea (19%), flushing or warmth (18%), numbness or paresthesia (11%), blurred vision (11%), tightness of throat, dizziness, convulsion, neck or shoulder pain, extremities pain, flank pain, tinnitus, dysarthria, and unsteadiness. END QUOTE
http://www.emedicine.com/ped/topic1788.htmQUOTE: Some doctors feel that the most common symptoms of Pheochromocytoma are headache, palpitations, and excessive and inappropriate perspiration. I feel that in this case, the doctors are ignoring the anxiety part of the illness which I personally feel is the most frightening one. Along with the anxiety, I experience tremors and uncontrollable shaking, nausea, weakness, chest pain like angina, and abdominal pain. Sometime I am flushed, other times I am extremely pale. I generally find myself looking at my hands, because they feel numb, and my palms are usually strangely mottled and sweaty... I have been told that these symptoms of nervousness and anxiety, nausea and chest pain, et cetera are rare. Yet every "Pheochromocytoma" friend I have talked with has these symptoms. END QUOTE
(Amen brother!)
http://members.aol.com/threepeb/QUOTE: Pheochromocytomas are a rare cause of hypertension, being the underlying cause of only about .01% of cases of high blood pressure. The manifestations of pheochromocytoma are varied and often not particularly specific and it is easy to understand why such a rare tumor may not be diagnosed immediately by even the most astute physician. Headache, perspiration or palpitation are symptoms found in 90% of such patients. Anxiety, tremor, high blood sugar, nausea, thoracic or abdominal pains, weakness, weight loss, shortness of breath, visual disturbances and heat/cold intolerance are other occasional symptoms. Patients can also sometimes present with confusion or psychosis, constipation, tingling sensations (in hands/feet), seizures, or high blood counts as well as Raynaud's phenomenon. Ironically, patients can also have a slow heart beat (bradycardia) or hypotension, particularly when standing up suddenly. END QUOTE
http://www.fitzgeraldmd.com/news/archives/000046.htmlQUOTE: Pheochromocytomas are usually benign. They may occur in or near the adrenal glands, or anywhere along the sympathetic nervous system roughly from the base of the skull to the bladder. The most apparent symptom, caused by the increased secretion of epinephrine and norepinephrine, is hypertension, or high blood pressure. This hypertension may be constant or intermittent. Attacks may occur every few months or several times daily, and typically last less than five minutes. Physical and emotional stresses can initiate an attack. During severe attacks, patients may experience headache, sweating, anxiety/apprehension, palpation, tremor, pallor or flushing of the face, nausea and vomiting, pain in the chest and abdomen. There may be a tingling, burning, or crawling sensation on the skin of arms and/or legs and/or presence of urinary difficulties. END QUOTE
http://www.vhl.org/newsletter/vhl1999/99dapheo.htmQUOTE: Different people can tolerate different amounts of stress before becoming ill. Some people are more sensitive to stress and are more likely to develop anxiety disorders. This can be caused either by genetic predispositions to anxiety, or by previous (particularly early childhood) exposure to certain stressful circumstances. Certain tumors of the adrenal gland (pheochromocytoma), may cause anxiety and tension by causing the release of cortisol, a stress hormone (this condition is rare). END QUOTE
http://www.pnt-200.com/anxiety.htmlWon't even bother listing the symptoms shown here: http://www.pheochromocytoma.org/sys-tmpl/frequentquestions/
So I don't have the "severe blood pressure" problems, but I go through these lists and find the following listed symptoms are ones that I do have:
- Headaches (Increasing intensity, sporadic, may last couple minutes to half an hour)
- Nausea (Waves of nausea – worse in evenings)
- Weight loss or gain (Initial significant weight loss and then fluctuates)
- Hypertension (fluctuates - from very good to moderately bad)
- Hyperglycemia (fluctuates – mild levels)
- Palpitations (occasional)
- Vision disturbance (very, very occasional “blurring)
- Orthostatic hypotension (Occasional – mild)
- Bradycardia (occasional, mild)
- Clammy skin / Cold skin (More primarily cold skin, cold intolerance – icy cold feet) / Raynaud's phenomenon symptoms
- Paresthesia - tingling, prickling, numbness or burning sensations(Hands/feet, constant - often very strong - Neurontin helps quite a bit)
- Extremities pain
- Nervousness - Anxiety (severe if not on Xanax) - Panic - Feeling of impending doom
- Tremor (occasional)
- Rapid pulse (fluctuates)
- Flushing
- Highly elevated cortisol levels
- Abdominal pain (more generally a tenderness- sometimes pain)
- Flank pain (more recent symptom, often severe)
- Constipation (Moderate, occasional - more like sluggish bowels)
- Presence of urinary difficultiesAnd all of these came on within a 2 - 3 week period immediately following the onset of severe anxiety that came on in June of 2004.
The only symptom that I have that does NOT have a direct link to a Pheop tumor is the hypogonadism... and highly elevated cortisol can often cause that.
http://www.endocrinology.med.ucla.edu/cushing%27s_syndrome.htm
http://www.gsdl.com/home/assessments/malehormone/appguide/index3.html
http://www.google.com/answers/threadview?id=450553Soooo......
Still waiting on test results.
And hoping that it IS a Pheo... just so something can start getting done with this problem!
Posted by Elroy on April 9, 2005, at 21:37:25
In reply to RE: Segeline (Deprenyl) and phenyalanine » Elroy, posted by Larry Hoover on April 9, 2005, at 14:04:24
Yes, SUX... I like that. It most surely does!!!
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>
> Sorry, I got busy preparing for a hearing (which I won).
>
> Anyway, it's the way of the medical system. They have this flow. You present with symptoms (SX). The try to diagnose (DX). Only from DX can you get treatment (TX). No DX, no TX. It totally SuX, when you still have major SX.
>
> Lar
Posted by Elroy on April 9, 2005, at 21:51:41
In reply to RE: PEA » gromit, posted by Larry Hoover on April 9, 2005, at 14:22:10
Some good info here.
Noticed that you did NOT include Rhodiola Roscea here. Good move. I think that it is an excellent adaptogen/tonic... but is NOT good for anxiety cases (causes mild increase with dopamine / NE levels apparently???).
I am currently on Xanax XR for anxiety, Restoril for a sleep aid and Neurontin for PN type pains.
All of this believed (now) to be somehow related to a possible Pheo tumor (the tumor is known to exist in left adrenal gland, question is whether or not it's Pheo or not)....
I'm wondering if these supps can be used to replace some of the current meds that I'm on. Maybe like the Xanax and maybe Restoril (add in melatonin maybe? valerian?)....
Well, 1st hope is that it is a Pheo and that surgical removal will clear up most of these problems...
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> >
> > Can you think of a supplement combo probably including meds that makes sense for me?
>
> You're going to have to experiment in the realm of stuff that works for anxiety.
>
> That's niacinamide (make very sure it's the amide).
>
> Kara takes 250 mg, and that's the right dose for her. You can take 500 mg, up to four times a day, but you will have to find your own dose thresholds.
>
> Magnesium. It can give you diarrhea, so if that happens, lower the dose for a while. Your body will adjust, and then you can increase the dose. You want to take 500 to 1000 mg/day, but you'll probably have to build up to that level (diarrhea).
>
> Fish oil. You gotta have those long chain omega-3s, or all the signalling in your brain is excitatory (via omega-6 arichidonic acid cascade). 5,000 grams/day is a good target for levelling brain hum. You can go much higher, though. And, if you're chronically deficient, you have to take it for close to a year to complete the replenishment of your brain phospholipids. Gradual effect, but very good effect.
>
> Taurine. Has an immediate effect, as it crosses the blood/brain barrier readily. Very similar in both structure and effect to GABA. 1-2 grams, for an acute episode. Some just take 500 mg/day.
>
> Siberian ginseng. Very tonic.
>
> St. John's wort. It's an option, if you get good stuff.
>
> Ashwagandha. (Withania somnifera). Also tonic, comes from Ayurvedic medicine.
>
> Korean (red) ginseng. Often adulterated, though. You need to find a reputable source.
>
> Kava kava, for short-term effects.
>
> > I was sorry to hear about your elbow, pain sucks! If I remember you were already dealing with chronic pain from another injury too.
>
> I did physical labour for many years, and I'm paying the price. I was, quite seriously, Hoover the Mover.
>
> Thanks for the concern. Gabapentin has helped dramatically with the nerve pain, although it's making me stupid as hell. Still no surgery date (over 15 months after I broke it).
>
> Lar
>
Posted by Elroy on April 9, 2005, at 21:56:05
In reply to RE: PEA » Elroy, posted by Larry Hoover on April 9, 2005, at 15:35:43
Some excellent info there.
Can easily see where Taurine would help with anxiety. Wonder how it would work with peripheral neuropathy type pains like Neurontin does?
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> True. Enhancing GABA-ergic function is one of the Holy Grails of pharmaceutical research. However, there is an option. Taurine.
>
> It's already (supposed to be) the most abundant free amino acid in your body, but its synthesis requires pyridoxal-5'-phosphate (P5P), the activated form of B6. Some people have trouble converting B6 to P5P, and some people are just short on B6 altogether. In any case, taking taurine isn't going to hurt you.
>
> Contrary to my earlier assertions that GABA and taurine are virtually identical in structure, save for the acid moiety, I find I have made a mistake.
>
> Taurine is NH2-CH2-CH2-SO3H
>
> GABA is NH2-CH2-CH2-CH2-CO2H
>
> Still, they act very much alike, in the brain. Except taurine does a hell of a lot more.
>
> http://www.thorne.com/altmedrev/fulltext/taurine3-2.html
>
> Now, this review article doesn't reflect more recent research which shows a neuromodulatory effect from taurine.
>
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11140356
>
> From a fairly quick review of Pubmed, I've determined that taurine:
> a) acts as an agonist at glycine and GABA(A) receptors;
> b) induces hippocampal synaptic plasticity and long-term potentiation;
> c) is synthesized by dedicated glial and Perkinje cells in specific brain structures, and is released directly into synapses;
> d) is taken into neurons by not one by two dedicated taurine transporters;
> e) is actively tranpsorted across the blood/brain barrier by dedicatied transporters;
> f) can totally inhibit glutamate-induced calcium efflux (effectively cancelling the glutamate excitatory signal);
> g) upregulates the gene responsible for GABA synthesis;
> h) induces long-term potentiation in cortical tissue via activation of GABA(A) and glycine RS receptors.
>
> Taurine does a whole whack of things. They think there might be a taurine receptor (dedicated signal transduction) buried somewhere in all of this. They don't really know what it does, but it's everywhere. It's neuroprotective against oxidative stress. It promotes growth of new brain connections, and strengthens existing ones. It's neuromodulatory, reducing all known excitatory signals.
>
> I wonder what it really does. <Spock eyebrow>
>
> Lar
Posted by gromit on April 10, 2005, at 1:13:58
In reply to RE: PEA » gromit, posted by Larry Hoover on April 9, 2005, at 14:22:10
Larry,
Thanks for the explanation of PEA, maybe I'm starting to get a hint of a clue now.
> > 1. Methamphetamine - I actually used this pretty responsibly after taking too much once.
> > 2. Marijuana - I was ridiculous with this for years, helps focus short term after a restart. Always makes me wired.
> > 3. Vicodin - Doesn't really help with pain much anymore, helps with focus and AD properties. Always makes me wired.
> > 4. Provigil - It was like each bottle I got had a random number of sugar tablets, when it worked it was great.
>
> You sound like me, sort of. Pretty close, anyway. I haven't used meth or pot for years and years, though. Provigil did the same to me. Some days, really potent. Other days, nothing.It's been 20 years since I've used anything but pot, I quit that around 13 years ago but have backslid several times. I definately get something more out of it than a buzz, I feel almost normal and the "high" is more like a side effect I don't enjoy anymore. I remember you saying that you are fatigued in the daytime but can't sleep, this is exactly what is going on with me too.
> You're going to have to experiment in the realm of stuff that works for anxiety.
Well I don't think of myself as being anxious, in social situations yes but not usually otherwise. Maybe I'm blocking it out somehow, when I do get nervous about something it's guaranteed that I will fail. When I say "wired" for me this is usually a good thing.
I'm already taking some of the stuff you mentioned, I do read your posts and if you say something is worth trying that's good enough for me. Taurine I haven't tried or Ashwagandha, niacinamide makes me more fatigued, maybe trying it at night with the magnesium would be better. Something calming might actually be good but I'm already so damned tired I try to avoid anything that makes it worse.
When you mentioned "brain hum" you really got my attention, I've always had this sound or feeling like I was standing near electrical lines on a humid night. This is pretty much gone now but I didn't attribute it to fish oil, I've been taking 8000-10000 mg of cheap Costco brand for quite a while now.
I guess what I meant to ask is what do those drugs do besides mess with dopamine? I have a strange intuitation it has something to do with endorphins but I just can't get my head around this stuff no matter how hard I try. The selegiline/DLPA combo is helping but it's not as effective as I was sure it would be. Still, I'm feeling better than I have for years.
> Thanks for the concern. Gabapentin has helped dramatically with the nerve pain, although it's making me stupid as hell. Still no surgery date (over 15 months after I broke it).
Well I'm glad you found something to relieve the pain, you sure don't sound stupid but I know what you mean.
Thanks
Rick
Posted by Larry Hoover on April 14, 2005, at 8:40:18
In reply to RE: PEA » Larry Hoover, posted by Elroy on April 9, 2005, at 21:56:05
> Some excellent info there.
Thanks.
> Can easily see where Taurine would help with anxiety.
It works for me. At least I can say that with 100% assurance.
> Wonder how it would work with peripheral neuropathy type pains like Neurontin does?
>Gabapentin's role in suppressing pain associated with peripheral neuropathy has finally been sorted out. It hits a very specific spinal cord receptor, the alpha2-adrenoceptor (with specific subunits that I forget).
The spinal cord used to be thought of as something analogous to a telephone trunk line; nothing more than a bundle of parallel cables, and distribution network to the various peripheral tissues.
We now know that the spinal cord processes signals all by itself. It then makes a decision (a threshold is crossed or not) to notify the brain. Spinal processing is completely independent of the brain. There can be what are essentially feed-back loops that hyper-sensitize the peripheral nerves to pain stimuli.
You know what happens when you get a live microphone too near the speakers (or the volume is set too high)......you get that feedback screech. That's what happens to peripheral nerves, they go into spinal feedback overload.
Gabapentin breaks the feedback loop.
Lar
Posted by Larry Hoover on April 14, 2005, at 9:11:35
In reply to RE: PEA » Larry Hoover, posted by gromit on April 10, 2005, at 1:13:58
> Larry,
>
> Thanks for the explanation of PEA, maybe I'm starting to get a hint of a clue now.I love questions. Don't worry about going over stuff again. That's how learning works. I am a teacher.
> > You sound like me, sort of. Pretty close, anyway. I haven't used meth or pot for years and years, though. Provigil did the same to me. Some days, really potent. Other days, nothing.
>
> It's been 20 years since I've used anything but pot, I quit that around 13 years ago but have backslid several times. I definately get something more out of it than a buzz, I feel almost normal and the "high" is more like a side effect I don't enjoy anymore. I remember you saying that you are fatigued in the daytime but can't sleep, this is exactly what is going on with me too.I'm still struggling to define this syndrome....to conceptualize within my understanding or normal biochemistry.
Whatever is happening, it is normal for us. What I mean is, it is a natural consequence of our prior experiences, the life that we have lived. We are here now, in this way, because.....but I don't know the because.
Gabapentin was prescribed to me for neuropathic pain, and it worked. It worked absolutely well. And right away, too.
Gabapentin has psychoactive effects, such that it is sometimes used in psychiatry. I looked at that, and thought, bonus! I take a neuropathy drug, and I get to do the psych experiment at the same time! It was always on my list of experiments....and now I'm doing it.
It is a bizarre drug. It gives me hope, and yet, it reduces my functionality. It's too soon to say, as I am not yet stable under its influence. But it may be part of my recovery. When I say recovery, I'm talking in terms of major determinants of functionality. I may be able now (or soon, anyway), to return to work. To leave my disability pension behind.
Up until now, I needed that safety net. It was inconceivable for me to exert myself towards work, without that safety net. I find myself not worrying about that net. We shall see.
> > You're going to have to experiment in the realm of stuff that works for anxiety.
>
> Well I don't think of myself as being anxious, in social situations yes but not usually otherwise. Maybe I'm blocking it out somehow, when I do get nervous about something it's guaranteed that I will fail. When I say "wired" for me this is usually a good thing.Anxiety and activation.....try considering them as synomyms, at least with respect to your mental state. How you experience this activation is not really the issue.....it's the effect on your energy budget that matters.
Sometimes my activation is emotionally charged, and I would then characterize it more as an anxious state, but that's a semantic distinction. In the end, the activation level is the issue for me.
> I'm already taking some of the stuff you mentioned, I do read your posts and if you say something is worth trying that's good enough for me. Taurine I haven't tried or Ashwagandha, niacinamide makes me more fatigued, maybe trying it at night with the magnesium would be better.
Try lowering the dose. When I say 500 mg, four times a day, that's the *maximum* safe dose (with respect to liver damage, safety factor included). Try 100 mg, and see how that is. Break your pills.
What got me interested in niacin metabolism led to my trial of Enada NADH, and niacinamide (a precursor of NADH), both essential for mitochondrial formation of ATP, the universal cellular energy source. Mitochondrial dysfunction is proven in chronic fatigue syndrome, fibromyalgia, and in some depressives.
The spring I did that trial, I did not collapse into fatigue after a gruelling work cycle. Moreover, my pollen allergies and resultant asthma almost didn't exist that spring. I have had disabling (not an exaggeration) pollen allergies ever since puberty (thirty odd years now). I have never had a season without absolute need for heavy intervention. Not only prescription antihistamines, but heavy topical steroids..... Not that year.
Other stressors have kept me from developing on that discovery. I still have to figure out some details.....but this pain thing from the arm injury has been totally distracting. Maybe now I can get back to that other process of discovery and integration.
> Something calming might actually be good but I'm already so damned tired I try to avoid anything that makes it worse.
Dose. Timing. There are always variables to consider.
> When you mentioned "brain hum" you really got my attention, I've always had this sound or feeling like I was standing near electrical lines on a humid night. This is pretty much gone now but I didn't attribute it to fish oil, I've been taking 8000-10000 mg of cheap Costco brand for quite a while now.
I actually associate my brain hum with a restoration of functionality. I tend to get it when other measures of recovery are on the upswing. It is an imbalance in restorative processes, but not adverse in and of itself.
For example, if I take selegiline after noon, I will have brain hum at bedtime. Selegiline at 7 a.m. tends to have worn off by then.
If I take B-complex at 4 p.m., I will not sleep due to brain hum. If it take it in the a.m., I'll generally be okay.
It does get complex, but the alternative......being in that bad place......no, I'll take the complex management thing, any day.
> I guess what I meant to ask is what do those drugs do besides mess with dopamine? I have a strange intuitation it has something to do with endorphins but I just can't get my head around this stuff no matter how hard I try. The selegiline/DLPA combo is helping but it's not as effective as I was sure it would be. Still, I'm feeling better than I have for years.Repeat that last sentence, until it is engraved in your perception.
I can't give you a mechanism that leads from selegiline to endorphins, but I believe there is one.
> > Thanks for the concern. Gabapentin has helped dramatically with the nerve pain, although it's making me stupid as hell. Still no surgery date (over 15 months after I broke it).
>
> Well I'm glad you found something to relieve the pain, you sure don't sound stupid but I know what you mean.Stupid as in acting erroneously, as if without thinking, while simultaneously knowing I'm messing up. Simple example...I was cooking yesterday, and went to turn off the stove. My meal was ready. Instead of turning off that burner, I turned on another one. Now two burners are on, and the other one had a plate sitting on it. Just Homer Simpson moments like that. Forgetting how to spell simple words. It's a bizarre drug. I hope I get used to it, i.e. the adverse cognitive elements can be accomodated.
>
> Thanks
> RickAny time. And thanks for the validation.
Lar
Posted by world citizen on April 14, 2005, at 11:13:02
In reply to RE: PEA » Elroy, posted by Larry Hoover on April 14, 2005, at 8:40:18
Hey guys,I would caution anyone taking Gabapentin to take some variation of liver protective herbs (milk thistle, dandelion root,curcumin etc) as this drug if fairly liver toxic. There are estimated to be millions of undiagnosed cases of Hepatits C out there, I know that taking the Neurontin (which I found to be totally unpredictictable in its efficaciousness) injured my liver further. Source Naturals makes a very good supplement called Liver Guard. We can be pain/anxiety free (relatively, anyway) and still protect our overall health.
World Citizen
Posted by Sarah T. on April 16, 2005, at 22:54:40
In reply to RE: PHEOCHROMOCYTOMA » tealady, posted by Elroy on April 9, 2005, at 21:24:58
Hi Elroy,
I'm entering this thread in the middle, without having read many of the posts. If you don't mind discussing it, I was wondering whether you've had any pain or aching from the adrenal tumor. I'm assuming that the doctors still haven't told you what kind of adrenal tumor it is? Or, are they assuming that it is a pheochromocytoma?
Posted by Elroy on April 18, 2005, at 16:13:18
In reply to RE: PEA » Elroy, posted by Larry Hoover on April 14, 2005, at 8:40:18
Excellent info.
Am in process of ordering Taurine. Since GABA does not readily pass thru the BBB, can GABA be taken concuurent with Taurine? I find it interesting that there are numerous GABA receptor sites in other locations of the body that correspond with anxiety symptoms (stomach, lungs, etc.).
I have found that the Neurontin has helped quite a bit with my "peripheral neuropathy type" pains. I state it in those terms as they still have no idea what is going on (with hormones and neurotransmitters, physical symptoms, etc.). The major metropolitan medical center that I have been seeing for tests now has me scheduled next month for neurologiccal department testing...
Anyway, back to the Neurontin. Have you any personal infor concerning "Lyrica". Supposedly is like a "Super Neurontin" (lower doses, fewer side effects, much better effects???).... Apparently it was approved by the FDA last September but has still not been released on to the US market (though apparently has been available in many European countries for at least several months now)...
Elroy
x
x
x
x
> > Some excellent info there.
>
> Thanks.
>
> > Can easily see where Taurine would help with anxiety.
>
> It works for me. At least I can say that with 100% assurance.
>
> > Wonder how it would work with peripheral neuropathy type pains like Neurontin does?
> >
>
> Gabapentin's role in suppressing pain associated with peripheral neuropathy has finally been sorted out. It hits a very specific spinal cord receptor, the alpha2-adrenoceptor (with specific subunits that I forget).
>
> The spinal cord used to be thought of as something analogous to a telephone trunk line; nothing more than a bundle of parallel cables, and distribution network to the various peripheral tissues.
>
> We now know that the spinal cord processes signals all by itself. It then makes a decision (a threshold is crossed or not) to notify the brain. Spinal processing is completely independent of the brain. There can be what are essentially feed-back loops that hyper-sensitize the peripheral nerves to pain stimuli.
>
> You know what happens when you get a live microphone too near the speakers (or the volume is set too high)......you get that feedback screech. That's what happens to peripheral nerves, they go into spinal feedback overload.
>
> Gabapentin breaks the feedback loop.
>
> Lar
Posted by Elroy on April 18, 2005, at 17:06:57
In reply to RE: PHEOCHROMOCYTOMA » Elroy, posted by Sarah T. on April 16, 2005, at 22:54:40
Sorry that I haven't posted in a few days. Additional testing going on plus some home front activities....
Anyway, the testing revealed that it is NOT a pheo.
On one hand felt that was pretty good news... on the other hand I was sorely disappointed as I've been looking desperately for "The Answer" and really felt that this was it (had so many of the symptoms that it was unreal... except for the "malignant hypertension" whereas my BP fluctuated all over the place).
Yes, one of my symptoms was (is) what they call "flank pain"(lower left, just above and behind the left hipbone - the adrenal tumor is in the left adrenal gland). Comes and goes. Used to be very minor - more like an ache, but now is often a sharper pain. Endos insist that it is not only benign, but is NOT biologically active, so is not secreting anything or causing anything to be secreted.
What was amazing is that my adrenaline hormones came back as low normal to even BELOW normal. With a pheo those levels would have been greatly elevated. My dopamine levels were low normal, my epiniphrine levels were low normal and my norepinphrine levels were way BELOW normal!!! Yet my cortisol levels - while slowly coming down over the last four months - have been very elevated... back last September they were almost SIX times the normal maximum range. Testosterone levels were very low back last September also and have impproved only slightly even with testosterone replacement therapy.
That seems extremely peculiar. One would think that if the problem was related somehow to the adrenal problem, that you wouldn't see this type of variance (i.e., cortisol levels should have been depressed also).
I'm just getting more and more puzzled (as are the various specialists). With low ranges in these dopamine related hormones, I am planning on speaking with my psych doc about going onto low-dose selegiline (along with tyrosine and DLPA) in an effort to get those hormones back up to par.
I currently am not taking my anti-cortisol regimen as I have cortisol testing again next week, but will resume that regimen right afterwards.
Addressing individual aspects of "The Problem" is all that I (and the specialists) can think to do right now - while testing continues to see if a root cause problem can be identified....
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> Hi Elroy,
>
> I'm entering this thread in the middle, without having read many of the posts. If you don't mind discussing it, I was wondering whether you've had any pain or aching from the adrenal tumor. I'm assuming that the doctors still haven't told you what kind of adrenal tumor it is? Or, are they assuming that it is a pheochromocytoma?
Posted by gromit on April 19, 2005, at 15:53:36
In reply to RE: PHEOCHROMOCYTOMA » Sarah T., posted by Elroy on April 18, 2005, at 17:06:57
> I'm just getting more and more puzzled (as are the various specialists). With low ranges in these dopamine related hormones, I am planning on speaking with my psych doc about going onto low-dose selegiline (along with tyrosine and DLPA) in an effort to get those hormones back up to par.
The combination of selegiline/DLPA and testosterone patches has been working well for me. For me the patches work much better than the gel, plus I was always worried about transfer to my wife or son. The shots work but it's a hassle going in every few weeks and I prefer a steady level anyway. I had been using the gel for 4-5 (guessing) months before starting selegiline and it was nothing like what I'm feeling now. Since switching to the patches it's even better.
So 10 mg of selegiline + 5 mg T patch daily is the best thing I've tried, my mood has not really improved but I do feel more focused and much better physically.
I hope your doctors can figure out what is going on. I can relate to how you're feeling, it's a strange thing to visit a doctor *hoping* they will find something physically wrong then being disappointed when they don't.
Rick
Posted by gromit on April 20, 2005, at 18:09:17
In reply to RE: PHEOCHROMOCYTOMA, posted by gromit on April 19, 2005, at 15:53:36
> So 10 mg of selegiline + 5 mg T patch daily is the best thing I've tried, my mood has not really improved but I do feel more focused and much better physically.
Gee, maybe I shouldn't have said anything. Today my doctor decided that it was unsafe to add anything to even 5 mg selegiline. He wanted to put me on prozac + zyprexa, like I need to be any more sleepy! We settled on 60 mg cymbalta and possibly adding an amphetamine later. This is supposed to be a less dangerous route than selegiline + whatever else? I feel like I'm the sane one and my doctors are nuts...
Rick
Posted by Elroy on April 21, 2005, at 20:59:30
In reply to Arghhh, posted by gromit on April 20, 2005, at 18:09:17
I think that you should print off some of the studies done on LOW DOSE selegiline and how it is NOT dangerous and how it is NOT an MOA-A inihibitor at those low levels (really anything below 15-20 mg daily).
QUOTE: "L-deprenyl is what good pharmaceuticals are all about. First it is exceptionally safe, second it protects and enhances mental function, mood and even libido, thirdly, it may even extend life. Imagine a safe agent that enhances both the quality and length of life." - Julian Whitaker M.D. - Health and Healing Newsletter, Whitaker Wellness Institute, Newport Beach, California. END QUOTE
QUOTE: Similarly, Birkmayer et al. reported benefit in an uncontrolled study in 102 outpatients and 53 inpatients with unipolar depression who received selegiline hydrochloride 5 to 10 mg daily in association with phenylalanine 250 mg daily- about 70% of these patients, in whom conventional antidepressants were not effective, were reported as having complete remission. END QUOTE
It sounds to me like he is listening primarily to a Big Pharm sales rep.
Maybe challenge him to provide the documentation / reviews / studies that shows selegiline to be dangerous at those levels LOW DOSE levels... combined with ANYTHING...
http://www.deprenyl.net/
http://qualitycounts.com/fpdeprenyl.html
http://smart-drugs.net/ias-deprenylJS.htm
http://www.deprenyl.info/
http://www.selegiline.com/
http://www.smart-drugs.com/ias-Info/ias-deprenyl.htm
http://www.selegiline.com/pea.html
http://www.selegiline.com/depplus.html
http://www.restoreunity.org/improving_deprenyl.htmEven higher doses used in Parkinson cases are quite safe:
http://my.webmd.com/content/article/92/101837.htm
Heck, if it is dangerous - provably dangerous - at low dose levels - then I'd sure like to know the criteria showing that BEFORE my psych docv starts me on that. She's concerned that my levels of NE are so low and is looking at selegiline - along with either tyrosine or DLPA - to very gradually boost those levels back up. But if he's got documentation as to it's safety levels, well, I'd sure as heck like to know about them!
Anyway, would caution with Cymbalta (or Effexor) as both are known to create urinary tract inflammation or prostatitis type sensation problems. I had severe immediate reaction in that regard with Effexor and then with Cymbalta had similar reactions - just that Cymbalta took about ten days to manifest instead of just a couple days like with Effexor.
I'd compare this symptom list - for Cymbalta - with LOW DOSE selegiline....
http://www.prozactruth.com/cymbalta.htm#common
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X> > So 10 mg of selegiline + 5 mg T patch daily is the best thing I've tried, my mood has not really improved but I do feel more focused and much better physically.
>
> Gee, maybe I shouldn't have said anything. Today my doctor decided that it was unsafe to add anything to even 5 mg selegiline. He wanted to put me on prozac + zyprexa, like I need to be any more sleepy! We settled on 60 mg cymbalta and possibly adding an amphetamine later. This is supposed to be a less dangerous route than selegiline + whatever else? I feel like I'm the sane one and my doctors are nuts...
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> Rick
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