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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 13 to 37 of 58. Go back in thread:
Posted by Elroy on September 22, 2005, at 20:55:12
In reply to Re: Anxiety, Ocinaplon and clinical trials » glenn, posted by Elroy on June 3, 2005, at 22:13:07
I started my personal Remeron protocol on June 7th. My Endo has been content to just let things "run their course" (i.e., it is either Cushing's and the source will be identified - or is pseudo cushings in which case it is someone else's concern). I researched the Remeron and approached my PCP doc about it and he initially prescribed it. My Psych doc was also advised and not only approved, but took over issuing follow-up prescriptions.
To summarize: I have had this strong hypercortisolism problem since the onset of severe anxiety around last June (possibly late May). The various involved docs (endo ,psych doc, PCP, etc.) have concluded - once they determined that it was not "regular" Cushing's (the endo says that it is Pseudo Cushings) - that a few years of strong stress and mild anxiety led to eventual dysfunction of the HPA Axis which then led to malfunctioning of the HPA Axis and hypercortisolism... which caused the severe anxiety (along with a number of other symptoms including things like hypogonadism and tinnitus, etc., etc.).
While this is an anti-depressent med our primary purpose in utilizing Remeron was due to its reported anti-cortisol effects... we were also of course hoping for some anti-depressent effects as I also had some mild depression, but the primary problem has been severe anxiety, severe insomnia and some other physical effects (like peripheral neuropathy type pains, hypogonadal state, tinnitus, painfully icy cold sensations in feet and lower legs, etc.),
I started 15 mg for first week - was supposed to be two weeks but had to move up earlier as sedation was just too great. I was sleeping like 14 - 16 hours a day! On one hand that was really great, as in good... You have to understand that I had insomnia, severe insomnia since this whole mess started and suddenly being able to sleep so deeply and long was just amazing. Anyway, went to 30 mg for a week, and then 45 mg for a week. I have been on 60 mg since then.
For me sedation has been greatest side effect. At 30 mg I was sleeping like 12 - 14 hrs (occasionally more), and at 45 mg about the same. At 60 mg I started out with sleeping at like 10 - 12 hours but that has gradually reduced to around 9 - 10 hrs minimum - sometimes more. I have put on about 15 lbs of weight since starting it but most seems related to slowed down metabolism rather than any type of food cravings).
Anyway, Remeron also has an anti-histamine effect which is more noticeable at lower levels, so one has to be cautious about dismissing it as being too sedative if they only experienced the 15 mg level..
Energy levels were low also early on, kind of like just being fatigued mildly, but that too has been lessening. I had an initial pick up of energy for a couple weeks after going to the 60 mg dosage but that seems to have subsided.
The key here is that (IMHO), I don't believe that Remeron is necessarily a good choice for a med if you do NOT have elevated cortisol. Maybe I'm wrong, but I don't think so. If it wasn't lowering my cortisol don't know if I would want to stay on it.
So to the key question.... Did it lower cortisol levels? Yes, it did. My 24-hr UFC test showed my cortisol levels in April were 241 (in a reference range of 20 - 100). Not surprising... ALL of my 24-hr UFC tests have shown highly elevated levels since I started testing last September. Most of them have been in the range of mid 200s to low 300s (reference range 20 - 100).... I then had one done on July 19th. The test result from that one came back Friday and I was a 93.9 - just barely inside the "normal range", but a huge improvement for me with my prior one at 241!
As to how I feel, the anxiety is much lessened from where it was three months ago. The depression is still slightly noticeable but not anywhere near as bad as it was three months ago (again the depression was always much lesser than the anxiety). Aside from indirect action via lowering the cortisol, the Remeron also has some reported direct anti-anxiety actions. Note that the anxiety nor the depression has completely gone away, just noticeably improved at this point. Some of my physical symptoms have also lessened quite a bit. Again, none have disappeared, just improved noticceably.
My belief is that the cortisol needs to continue to be driven downward yet more. There's a "normal range" and then there's an "optimal range". I believe that optimal range is like around 40 - 65, but obviously varies between individuals. At this point, I might be just barely inside in the "normal range", but my belief is that for the HPA Axis to be able to re-set it is going to need levels reduced quite a bit more and to be reduced for some time period so the HPA Axis can hopefully correct its dysfunctional aspect and "re-set" so that cortisol production will normalize.
My current goal is simply to continue my Remeron protocol until the next scheduled round of cortisol testing (mid October) and see what my levels are at that time. However I also must look at the prospect of cortisol levels drifting back to elevated levels in which case I'll know that the Remeron was a temporary fix. And also obviously that the HPA Axis has not re-set.
I am tentatively scheduled into a study at NIH in regards to Adrenal Gland Tumors in early December. I have a small benign tumor located in my left adrenal gland. From the tests that my Endo has run, it is - according to him - not only benign but also "biologically inactive" and not responsible for anything that's going on. That said, he did write a letter of referral to NIH and I got into the study (some of my suppression test numebrs were very borderline and others were opposite of what other tests showed so I think that they're somewhat intrigued.
Anyway, I will probably stay on the Remeron until two weeks before I go to NIH. That will give me the opportunity to see what the levels are at being off of the Remeron. If levels start climbing back up, then have to wonder if Remeron simply isn't the long-term solution I'm looking for or if it simply needs more time (a lot more maybe?) on the Remeron???
Elroy
P.S. Has anyone actually used the "Compassionate Use" protocol via the Feminist Majority organization for FDA approval to actually obtain and use RU486 for psychological disorder situations? My interpretation of the tests that have been done is that the RU486 protocol is strictly a "short-term" (i.e., 4 - 7 days) protocol. Is that the same interpretation most people are getting also? I know that people with inoperable Cushings who go onto RU486 long term have the prospect of some significant side effects, but it's my understanding that those side effects are avoided with the short-term protocol (and which my Endo can't seem tog rasp as being the main difference... every time I make a suggestion in that direction he immediately assumes a long-term protocol and starts bringing up serious side effect issues....
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> OK, here goes:
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> My situation started with a severe bout of anxiety in June of 2004. Prior to that I had been treated for anxiety (milder) from July 2002 until February of 2004. Prior to that I had extended time period of very high stress from around 1996 until 2002. I believe that the high levels of stress from 1996 through 2002 caused a steady increase in cortisol levels. That increase in the cortisol was then elevated in the time period of 2002 through 2004. There was then a "momentary break in the action" (2/04 until 6/04, though cortisol secretions probably continued at high levels). Then in June of 2004 the bottom fell out when extremely severe anxiety started up.
>
> My main physical symptoms didn't start up until the severe anxiety hit in June of 2004. Then the symptoms of prostatitis (burning urethra primary pain - not just when urinating but always, varies in intensity), complete loss of libido, complete erectile dysfunction, extremely cold feet, somewhat cold hands, symptoms of tingling/stinging sensations in hands/lower arms and feet/lower legs, tinnitus, insomnia - and several other more "minor" symptoms (*)... and all came about within about 2 - 3 weeks of the severe anxiety. The major symptoms were very strong right from the start. The “minor” symptoms were generally present early on, but fluctuate in occurrence and intensity.
>
> I have been through numerous rounds of advanced testing since then. I was found to have sub-normal levels of testosterone and was put on testosterone replacement therapy (August 2004). I was found to have very high levels of cortisol (Sept 2004) and was at one point diagnosed with Cushing's Disease (more advanced testing ruled that out). A tumor was found on my left adrenal gland and concern was raised that it was either Cushing's Syndrome or was a Pheo tumor. More advanced testing ruled both of those out.
>
> My cortisol levels were extremely high - almost six times normal ranges - in Sept/Oct of 2004 and then dropped slightly through the end of the year, then dropped significantly for a couple of months (but still well above normal ranges) and then recently climbed back up again to twice normal ranges. Also my urinary creatinine levels have been elevated above normal ranges on every 24-hour urine test that I have taken since last September (probably 10 - 12).
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> Most recent test (one serum test) has also shown that my epinephrine levels are in low normal ranges and that my norepinephrine levels are in the well below normal ranges.
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> I have been involved in psychiatric therapy (both talk therapy also with EMDR and prescription medication to include my current Xanax for severely high anxiety) since last September. Just started the EMDR as few weeks ago.
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> Note: In February of 2004 my weight had climbed - over 2 years - from around 230 lbs to around 295 lbs. After initial round of anxiety cleared up in Feb 2004, I started back working out and dropped weight down to 245 lbs by July of 2004. Since then weight has fluctuated back and forth (250 - 270) regardless of diet or exercise. Also have lost an inch of height in the last 2 years.
>
> (*) Other symptoms: moderate fatigue, short term memory problems (mild), occasional very strong tightness in the neck and shoulders, poor sleep, tightness in chest, white coated tongue, periodic frequent urination, periodic headaches, occasional visual blurring, milder sensitivity to bright light, moderate depression (primarily anxiety problem), irritability, panic attacks (primarily earlier), personality changes, mood swings, chills - cold intolerance, periodic night sweats, occasional shortness of breath, occasional lightheadedness, occasional balance problems, sensitivity to cold, irregular heartbeat, some constipation, generally sluggish bowels, abdominal bloating after eating, periodic abdominal tenderness, (mild) low body temperature, tingling/stinging sensations in feet/lower legs and hands/lower arms, also itching sensation across torso and face, mild "burning mouth" symptoms, mild difficulty swallowing, rashes (mainly on upper chest, but periodic flushing of upper torso and itchiness that comes and goes on several body areas), etc. (some more minor things)....
Posted by SLS on September 22, 2005, at 21:47:02
In reply to Re: Remeron and Cortisol » Elroy, posted by Elroy on September 22, 2005, at 20:55:12
Hi.
Another alternative to consider would be to employ a short course of dexamethasone: 3-4mg per day for 4 days. This might help reset the HPA axis. I am looking into this treatment for bipolar depression. I would be doing this while continuing with my current drug regime. If it works, I predict that I would need periodic maintenance treatments. Hopefully, the frequency of these treatments would decrease over time. One study suggested that this procedure was preferentially successful to those who were hypercortisolemic.
Just an idea.
- Scott
--------------------------------------Acta Psychiatr Scand. 1997 Jan;95(1):58-61. Related Articles, Links
Dexamethasone augmentation in treatment-resistant depression.Dinan TG, Lavelle E, Cooney J, Burnett F, Scott L, Dash A, Thakore J, Berti C.
Department of Psychological Medicine, St Bartholomew's Hospital, London, UK.
A total of 10 patients who fulfilled DSM-III-R criteria for major depression were recruited to the study, each of whom had failed to respond to a 6-week course of treatment with either sertraline or fluoxetine. Each subject had baseline serum cortisol measurements together with a Hamilton depression (HAMD) score. All patients were started on dexamethasone (3 mg daily) for 4 days, while remaining on their antidepressant treatment. Further Hamilton ratings were made on days 5 and 21. Six patients showed a significant improvement, whilst two showed a minimal response. A good clinical response was associated with a high baseline cortisol level.
PMID: 9051162 [PubMed - indexed for MEDLINE]
Posted by Tenifer on September 22, 2005, at 22:24:36
In reply to Re: Remeron and Cortisol » Elroy, posted by Elroy on September 22, 2005, at 20:55:12
Hi Leroy,
Yes, all of a sudden. But looking back I should have seen it coming. I had been under tons of stress since,well, for a long time. I was a paratrooper in the 82nd Airborne Division back in the late 70's, early 80s and never got used to the anxiety of jumping out of airplanes. But the anxiety was gone after the jump.
Jump forward a few years and now I'm a police officer and have a constant state of tension when I'm out on patrol, punctuated by extreme moments of terror and adrenaline surges.
in 1990 I started an inside job that turned into more stress than the street work. This is all due to damn computers. Anyway, this set the stage. Add to that going back to college and getting my 4.0 GPA-first in the class (but at what cost) and other stressors and the stage was set.
My parents were not in good health and my father had major heart surgery. A few months later I experienced a panic attack in work when I got trapped inside a locked vestibule and couldn't get out. That was a complete surprise to me! I managed to pull myself together and found a way out. Immediately thereafter my anxiety dropped off, like its supposed to do, and I joked about it to my cooworkers when they came into work later in the day.
Now jump forward a couple of more months to May 2004. I get a bad case of poison ivy and start a 6 day course of Medrol. Coincidentally, I mention to my doctor the day I saw him about the poison ivy that I've been feeling anxious lately, mostly in work. It never interfered with my sleep and always improved when I got home and later in the evening. He handed me Lexapro along with the Medrol. I didn't take it, because I didn't think it was that bad. It didn't interfere with my life in any way.
Well, 2 days after completing the Medrol I literally thought I was going insane. It felt like my brain were tearing itself to pieces! It was the most horrific experience I had ever had. That was the first week in June 2004. At first I thought it was Medrol withdrawal.
I got a little better a couple of days after that and only had a "baloon" head - lightheaded. That came about pretty quickly when, after not having eaten for about a week, I forced myself to eat a soft pretzel. Within a few minutes I was feeling much better (wish I knew why).
But it didn't last, 2 weeks later I had another crash, on Monday, when back at work. I went to the doctor and he started me on Paxil which was a nightmare and made me MUCH worse. Then we added Ambien for sleep, then Desyrel for sleep, then Buspar to augment. I couldn't titrate the Paxil cause it made my anxiety worse and caused such a sharp mood swing into depression, all I could do is cry and wait for the effects to lessen.
We quit the Paxil and tried Effexor. No good.
Got off everything and actually felt better for a while - not good, but better than I had ever been on the meds. But, a couple of weeks later, my sleep went back to hell and I struggled to find something natural since the doctors had given me poison - my confidence in MD's, needless to say, is shot.
The only thing that helped me was St. John's Wort (Metagenics brand - 900mg day which I raised to 1125) I was able to sleep. Sometimes I would need a benadryl but I could get 5-7 hours of sleep. Stresors would always upset this fine balancing act though. I never got to full remission, things just got to a level where I could manage better.
The I started L-tryptophan. 6 days after starting the TRP I had one of the best nights I have had in over a year. I felt completely normal! That was Sunday night and I was really encouraged that, if I could contain the stressors in my life, that I would be on the road to recovery.
On Monday night, the next day, Labor Day, my father passed away. He had been in a nursing home and was slowing fading. My sister and I were at his bedside.
Ever since then I have lost my grip on the tightrope and am struggling to reliably sleep. I'm back to resorting to Ambien, benadryl, vistaril, ativan, klonopin, and beer to get myself 5 hours of poor sleep. I'm having intense anxiety that is easily provoked by a song, traffic, someone talking to me, etc. I'm crying uncontrollably for no reason and am now, for the first time, experiencing some significant anger and hostility. Could this be grief? Maybe so, but with my fractured nervous system its worse than anyone living has experienced I'll bet.
Now, as far as cortisol goes, the interesting thing is that when this whole debacle started I had serum testing done. This was while I was on the Paxil. Instead of lowing it, the cortisol went up while taking the Paxil (no wonder it wasn't friendly to me!).
Note, these are all serum cortisol (AM) with a reference range of 4.0 - 22.0
6/29/04 : 17.4
11/23/04 : 22.1
2/1/05 : 24.6
8/26/05 : 23.9 (and this was BEFORE my father's passing. I can't imagine what the corticol levels are now. :(Have you ever had serum cortisol levels checked? I'm curious what my levels might translate into if converted to UFC (if thats even possible to guess).
I'm more than convinced that there has been a breakdown on my HPA Axis regulation. The sudden onset of these severe symptoms and their response to St. John's Wort, which helps modulate HPA function, just lend more evidence to it. The question is, how do I get it back down where it belongs and get it to stay there without taking neurotoxic meds the rest of my life?
I'm about ready to give up and give some meds a try but the side effects and withdrawal effects worry me...especially the insomnia. I'm considering the following:
Neurontin
Doxepin
Remeron
InderalAnd even "beetle dung" if it will help slow me down so I can relax and sleep. ;)
I have benzo's but am very reluctant to take them because of the addiction potential. And SSRI's and anything even mildly activating are not options for me. Too sensitive.
Anyway, thats the redacted version of my tale. I've read alot of your posts and will try to see if I can get a UFC and a late nifghr salivary cortisol test done. I mentioned it to my holistic doc once and she said it wasn't very reproducible. I don't care. Its another piece of information; a piece of the puzzle so to speak. We'll see what she suggests tomorrow. Whatever happens, I need to get stabilized before this thing turns into an even bigger monster down the line.
Great to know I'm not alone out there Elroy. Its a shame we can't chat online anytime soon. I find typing and email to be a frustrating pain in the ark. :]
Hope to hear from you soon and that improvement continues. May God be with you,
David
Posted by Elroy on September 23, 2005, at 13:05:53
In reply to Re: Remeron and Cortisol - Dexamethasone, posted by SLS on September 22, 2005, at 21:47:02
Scott,
Very interesting study - and alternative option. I have wondered the same thing with the short-term RU486 therapy - i.e., will it require periodic maintenance applications with some individuals. My prediction would be that some people will clear up with one short-term application, and that others will need several applications over a period of time. Like you said, probably of a dwindling nature as the HPA Axis strengthens.
I noted this quote: "A good clinical response was associated with a high baseline cortisol level." That would only tend to make sense, right? Whether it was dex or RU486 or Remeron, etc. The benefit is only going to work with those meds with patients who in fact have highly elevated cortisol. I think that is why some people have no response to Remeron (for example). As it's main "claim to fame" seems to be that it is one of the few "standard" psych drugs that has some record of controlling cortisol, it seems to me that the primary benefit it would have to a patient without high cortisol is that it can most surely cure insomnia (as long as you keep taking it!).
Thanks for the info....
Leroy
P.S. As some corroboration, I noted that each time my Endo had me do one of those Dex suppression tests (especially the couple that I did that were spread out over two days), I did in fact feel quite a bit beter for the day on the dex and a few days thereafter.
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X> Hi.
>
> Another alternative to consider would be to employ a short course of dexamethasone: 3-4mg per day for 4 days. This might help reset the HPA axis. I am looking into this treatment for bipolar depression. I would be doing this while continuing with my current drug regime. If it works, I predict that I would need periodic maintenance treatments. Hopefully, the frequency of these treatments would decrease over time. One study suggested that this procedure was preferentially successful to those who were hypercortisolemic.
>
> Just an idea.
>
>
> - Scott
>
>
> --------------------------------------
>
>
>
> Acta Psychiatr Scand. 1997 Jan;95(1):58-61. Related Articles, Links
>
>
> Dexamethasone augmentation in treatment-resistant depression.
>
> Dinan TG, Lavelle E, Cooney J, Burnett F, Scott L, Dash A, Thakore J, Berti C.
>
> Department of Psychological Medicine, St Bartholomew's Hospital, London, UK.
>
> A total of 10 patients who fulfilled DSM-III-R criteria for major depression were recruited to the study, each of whom had failed to respond to a 6-week course of treatment with either sertraline or fluoxetine. Each subject had baseline serum cortisol measurements together with a Hamilton depression (HAMD) score. All patients were started on dexamethasone (3 mg daily) for 4 days, while remaining on their antidepressant treatment. Further Hamilton ratings were made on days 5 and 21. Six patients showed a significant improvement, whilst two showed a minimal response. A good clinical response was associated with a high baseline cortisol level.
>
> PMID: 9051162 [PubMed - indexed for MEDLINE]
>
>
>
Posted by Elroy on September 23, 2005, at 13:16:57
In reply to Re: Remeron and Cortisol, posted by Tenifer on September 22, 2005, at 22:24:36
David...
Some more amazing coincidences there. Can you Babblemail me? Just click on my name where it is highlighted on the post and it should take you to the Babblemail feature.
Just to hit some the high points.
Former Marine (late 60s / early 70s) - Also former police officer (also a police union leader who became aware of administrative corruptions and began "whistleblowing" - Former SWAT member / supervisor (17 years - interestingly, I thrived on the "street stress" - kind of like in the Marines and being out in the field - but suffered from considerable "administrative stress" from constantly being screwed with once the whistleblowing started) - Likewise pulled off the street (as a Patrol & SWAT lieutenant at this point) and put into a "make work" admin job (how many paperclips are there in TODAY's inventory?) - then the family loss / grief situation triggering strong anxiety reaction that wouldn't "clear up"...
Anyway, could go on. Give me a Babblemail if you can...
BTW... have you had your cortisol levels checked? If not, do so ASAP. Ask doctor to have you run a "24-hour Urinary Free Cortisol Test"... actually should do like three of those over a two week time period... Not a cortisol blood test and not a cortisol saliva test, but a 24-hr UFC...
Elroy
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Posted by Elroy on September 23, 2005, at 13:36:04
In reply to Re: Remeron and Cortisol, posted by Tenifer on September 22, 2005, at 22:24:36
Dave,
Should have mentioned that I noted your serum cortisol levels and that they clearly show a trend towards cortisol levels elevating - which can be a definite sign of HPA Axis becoming dysfunctional.
Unfortunately the serum testing or cortisol just gives a "snapshot" of what your cortisol levels are at the precise moment, and cortisol secretion has a "rollercoaster" like "ups and downs" of secretion during the day... so an hour after your last listed cortisol test, you may have had a serum reading of 35 or 50. The 24-hr urinary test is better in that it shows a daily total and whether there's a total elevation or not.
Also, have your doctor run Late Night Salivary Cortisol Tests on the same nights that you do the 24-hr UFC. Cortisol is what wakes us up in the mornings (as it rises) and puts us to sleep at night (as it falls), so your night time levels should be really low (you do the test between 11 PM and Midnight). Prior to Remeron my levels rans in the low 30s to mid 40s (range is "less than 100" - people who have full-blown regular Cushing's will be up close to 100 or often WAY over 100). Afetr going on the Remeron, I am getting levels like 7, 11, 13, 17 (the highest I've had on Remeron), etc.
If your late night levels are higher (into 30s, 40s, and above), then you will know why you are having problems with the sleep...
If this is all foreign to your doctor, check with psych doc and see if they are familiar with the concepts of elevated cortisol, dysfunctional HPA Axis and psychological disorders.
If they're not familiar with that concept (too many immediately assume you have a serotonin deficiency and try to push an SSRI which often is the worse thing that you can take for anxiety - and especially even more so with elevated cortisol situations as many SSRIs - as you found out - actually INCREASE cortisol levels!), find yourself an Endo... You are looking for a Adrenal - Pituitary specialist... the vast majority seem to be diabetes specialists so watch who you get hooked up with... and have the testing done through the Endo (tell them that you suspect a Pseudo Cushing's situation based on HPA dysfunction via severe anxiety).
Elroy
Posted by Elroy on September 23, 2005, at 17:18:14
In reply to Re: Remeron and Cortisol, posted by Tenifer on September 22, 2005, at 22:24:36
Dave,
I keep coming across so many similarities in our situations that it's spooky.
You mention that situation with getting locked in a vault at work. I too had never had any type of problem with claustraphobia until after my stress problems started at work. I had some work to do under the house at our old place (no prob, had done similar before several times) and suddenly had severe claustraphobic feelings. Likewise, had two MRIs done in 1996, no problem. But then in 1998 went to have another one (had neck surgeries from on-duty injuries in 1996 and 1998) and had extreme claustraphobia.
Oh yeah, and I keep forgetting to mention that right in the middle of all my initial stressors (the work-related stuff) that my father passed away in mid 1999! And then the family loss (and not even direct family) situation in June of 2004. But even it was like BAM!, suddenly I have this "inner unrest" and "jitteryness" that quickly (within a couple weeks) turned in to outright anxiety. And then I get all of these other physical symptoms (from the elevated cortisol which is now running rampant due to the severe anxiety busting up the HPA Axis)... but I keep analyzing back to the severe anxiety... and that's when it hit me what was happening, that I had this sudden fear of dying, of my wife dying, of things changing in an ultimate sense, of no longer existing... and with it came a concurrent fear of being elderly in a frail and broken down sense... and my very fears were increasing my anxieties which was fueling the cortisol fire which was going to insure that my fears came true!
That (probably late September by this point) was when I realized that I was going to need some serious help in getting things fixed. Not just medically, but psychologically as well. That was when I sat down with my psych doc and wanted to be put on something that would be a low-dose solution to taking the hard edge off of the anxiety (first we tried Ativan but she then decided Xanax XR would be better as far as easier to withdraw from, etc. - in fact she mentioned something about a study that showed that at doses below 4 mg a day at least 50% of users can quit cold turkey with no withdrawal). We also discussed some options for the severe insomnia (cause nothing else was going to help unless I got the severe anxiety and the insomnia under some moderate control anyway). We started with 10 mg Ambien and then even 20 mg Ambien but it has a short half-life and I would wake up - wide awake - after 4 hours, so then we went to Restoril (again, low dose at 7.5 mg). It was better, but still not full sleep (5 - 6 hours). I had also done a little bit of prior work with my initial therapist with EMDR therapy and wanted to give it a prolonged try but she was moving to Arizona and we only got a few sessions in and then she had to find me another good local one (fortunately I actually had two real good ones to choose from). So I have done about five sessions now with the second therapist - and we have yet to address the primary trauma in the form of the fear of dying, fear of aging in a non-robust fashion, etc. We have been working on clearing out a lot of older, buried traumas so that things are cleared out for when we knuckle down to addressing the main issue....
Of course it is a total package. You can't (IMHO) work strictly on the psychological problems and totally ignore the cortisol. Well, maybe you can and the cortisol levels will gradually correct themselves as the HPA Axis re-sets, but I figure that addressing both as necessary items is the better way to go. Or work on the cortisol problem / HPA Axis problem without also addressing the psychological issues!
Are you having any other physical symptoms associated with your situation? I had the following physical symptoms manifest within 4 - 6 weeks of the onset of the severe anxiety:
1. Abrupt serious hypogonadal status (libido and erectile functioning went from like a 9.5 on a 10 scale to a zero - tests showed Total Testosterone in the range of 140s with normal range being 240 - 1000 and optimum range being 700 - 1000).
2. Severe insomnia
3. Severely icy cold sensations in feet (primarily) and hands (less so).
4. Peripheral neuropathy type pains in feet (mainly) and hands (less so)
5. Periodic waves of an itchy/stinging type sensation, like a widespread rash or hives across upper torso. Will generally not be visible though at times will manifest as a visibile rash across upper chest.
6. A sensation of a burning urethra type pain (not simply when urinating like one might have with a prostate disorder, but ALL of the time), and
7. Severe tinnitus.Aside from cortisl testing, have had numerous other related tests to check out these various physical disodders. For example, neurological testing on both the tinnitus problem and the peripheral neuropathy type pains. Both checked out clear. So it's pains similar to PN but isn't PN! Also ENT doc checked clear as to any known physical cause for the tinnitus. Etc., etc., etc.
Interestingly, working on the anxiety (i.e., Xanax XR), the insomnia (i.e., Restoril), the cortisol (i.e., initially several strong anti-cortisol OTC supps and now the Remeron - and getting on TRT for the hypogonadal status - have all helped minimize these symptoms quite a bit. For example, the Xanax XR not only helped with 90% of the sever anxiety but also reduced the tinnotus to subside by about 70 - 80%. TRT tremendously helped with the loss of libido and ED problems. The insomnia is completely gone with the Remeron. Etc., etc.
Well, gotta' run as it's dinner time.
May God be with you, too....
Elroy
Some links to review:
http://www.nih.gov/news/pr/sep2002/nichd-09.htm
http://www.nature.com/npp/journal/v23/n5/full/1395567a.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9709931
http://www.annals.org/cgi/content/full/138/12/980
http://dr-john.ca/depression_article13.php
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> Yes, all of a sudden. But looking back I should have seen it coming. I had been under tons of stress since,well, for a long time. I was a paratrooper in the 82nd Airborne Division back in the late 70's, early 80s and never got used to the anxiety of jumping out of airplanes. But the anxiety was gone after the jump.
>
> Jump forward a few years and now I'm a police officer and have a constant state of tension when I'm out on patrol, punctuated by extreme moments of terror and adrenaline surges.
>
> in 1990 I started an inside job that turned into more stress than the street work. This is all due to damn computers. Anyway, this set the stage. Add to that going back to college and getting my 4.0 GPA-first in the class (but at what cost) and other stressors and the stage was set.
>
> My parents were not in good health and my father had major heart surgery. A few months later I experienced a panic attack in work when I got trapped inside a locked vestibule and couldn't get out. That was a complete surprise to me! I managed to pull myself together and found a way out. Immediately thereafter my anxiety dropped off, like its supposed to do, and I joked about it to my cooworkers when they came into work later in the day.
>
> Now jump forward a couple of more months to May 2004. I get a bad case of poison ivy and start a 6 day course of Medrol. Coincidentally, I mention to my doctor the day I saw him about the poison ivy that I've been feeling anxious lately, mostly in work. It never interfered with my sleep and always improved when I got home and later in the evening. He handed me Lexapro along with the Medrol. I didn't take it, because I didn't think it was that bad. It didn't interfere with my life in any way.
>
> Well, 2 days after completing the Medrol I literally thought I was going insane. It felt like my brain were tearing itself to pieces! It was the most horrific experience I had ever had. That was the first week in June 2004. At first I thought it was Medrol withdrawal.
>
> I got a little better a couple of days after that and only had a "baloon" head - lightheaded. That came about pretty quickly when, after not having eaten for about a week, I forced myself to eat a soft pretzel. Within a few minutes I was feeling much better (wish I knew why).
>
> But it didn't last, 2 weeks later I had another crash, on Monday, when back at work. I went to the doctor and he started me on Paxil which was a nightmare and made me MUCH worse. Then we added Ambien for sleep, then Desyrel for sleep, then Buspar to augment. I couldn't titrate the Paxil cause it made my anxiety worse and caused such a sharp mood swing into depression, all I could do is cry and wait for the effects to lessen.
>
> We quit the Paxil and tried Effexor. No good.
>
> Got off everything and actually felt better for a while - not good, but better than I had ever been on the meds. But, a couple of weeks later, my sleep went back to hell and I struggled to find something natural since the doctors had given me poison - my confidence in MD's, needless to say, is shot.
>
> The only thing that helped me was St. John's Wort (Metagenics brand - 900mg day which I raised to 1125) I was able to sleep. Sometimes I would need a benadryl but I could get 5-7 hours of sleep. Stresors would always upset this fine balancing act though. I never got to full remission, things just got to a level where I could manage better.
>
> The I started L-tryptophan. 6 days after starting the TRP I had one of the best nights I have had in over a year. I felt completely normal! That was Sunday night and I was really encouraged that, if I could contain the stressors in my life, that I would be on the road to recovery.
>
> On Monday night, the next day, Labor Day, my father passed away. He had been in a nursing home and was slowing fading. My sister and I were at his bedside.
>
> Ever since then I have lost my grip on the tightrope and am struggling to reliably sleep. I'm back to resorting to Ambien, benadryl, vistaril, ativan, klonopin, and beer to get myself 5 hours of poor sleep. I'm having intense anxiety that is easily provoked by a song, traffic, someone talking to me, etc. I'm crying uncontrollably for no reason and am now, for the first time, experiencing some significant anger and hostility. Could this be grief? Maybe so, but with my fractured nervous system its worse than anyone living has experienced I'll bet.
>
> Now, as far as cortisol goes, the interesting thing is that when this whole debacle started I had serum testing done. This was while I was on the Paxil. Instead of lowing it, the cortisol went up while taking the Paxil (no wonder it wasn't friendly to me!).
>
> Note, these are all serum cortisol (AM) with a reference range of 4.0 - 22.0
>
> 6/29/04 : 17.4
> 11/23/04 : 22.1
> 2/1/05 : 24.6
> 8/26/05 : 23.9 (and this was BEFORE my father's passing. I can't imagine what the corticol levels are now. :(
>
> Have you ever had serum cortisol levels checked? I'm curious what my levels might translate into if converted to UFC (if thats even possible to guess).
>
> I'm more than convinced that there has been a breakdown on my HPA Axis regulation. The sudden onset of these severe symptoms and their response to St. John's Wort, which helps modulate HPA function, just lend more evidence to it. The question is, how do I get it back down where it belongs and get it to stay there without taking neurotoxic meds the rest of my life?
>
> I'm about ready to give up and give some meds a try but the side effects and withdrawal effects worry me...especially the insomnia. I'm considering the following:
>
> Neurontin
> Doxepin
> Remeron
> Inderal
>
> And even "beetle dung" if it will help slow me down so I can relax and sleep. ;)
>
> I have benzo's but am very reluctant to take them because of the addiction potential. And SSRI's and anything even mildly activating are not options for me. Too sensitive.
>
> Anyway, thats the redacted version of my tale. I've read alot of your posts and will try to see if I can get a UFC and a late nifghr salivary cortisol test done. I mentioned it to my holistic doc once and she said it wasn't very reproducible. I don't care. Its another piece of information; a piece of the puzzle so to speak. We'll see what she suggests tomorrow. Whatever happens, I need to get stabilized before this thing turns into an even bigger monster down the line.
>
> Great to know I'm not alone out there Elroy. Its a shame we can't chat online anytime soon. I find typing and email to be a frustrating pain in the ark. :]
>
> Hope to hear from you soon and that improvement continues. May God be with you,
>
> David
>
>
>
>
Posted by Elroy on October 14, 2005, at 21:40:58
In reply to remeron and cortisol, posted by glenn on October 21, 2002, at 14:42:04
> Remeron , cortisol and the hpa axis.
>
> I have my doubts about remeron as an effective anti cortisol med, I may be wrong but consider the following:
>
> I know I have very high cortisol levels both from urinary and salivary tests yet Remeron did nothing for me.
> It was very tolerable and good for sleep but did not affect my mood at all. ( 3 months)
>
> In theory remeron sounds like an almost ideal medication, it affects both serotonin and noradrenaline and it seems lowers cortisol. It sounds like a mixture of celexa, reboxetine and anticort yet it has a pretty miserable reputation as an anti depressant, most of the reports I have seen suggest it as good for sleep and non sexually dysfunctionalising but certainly no more effective than any other ssri / ssnri.
>
> As opposed to RU 486 and holy basil it does not have a reputation for acting particularly quickly which would be surprising if it were that active against cortisol as both the aforementioned substances are.
>
> However I may be totally wrong here and maybe I have missed something, so please feel free to put me straight.
>
> This bit is mainly for pfinstegg. I am not sure about something you said in your response to NikkiT2.
> If I got this right you were explaining that successful dexamethasone suppression indicates that the hpa axis is working ok. I am not sure about this for a number of reasons:
>
> Firstly the test is I believe to distinguish between a tumor caused increase in cortisol and “ other causes”
> If the dexamethasone fails it is because it’s anti cortisol action does not affect tumor-produced cortisol.
> Whilst it clearly can cause cortisol suppression if there is no tumor, I am not sure that this indicates that the hpa axis is working ok. In my case for example dexamethasone causes a temporary drop in cortisol but it goes back after the 24 hours.
>
> Secondly if the hpa axis is ok (as evidenced by the dexamethasone working) how do the cortisol levels get so high in the first place and stay that way. I know stress is the original cause but if one was still ok hpa axis wise, cortisol levels should eventually return to within the norm on their own without dexamethasone suppression.
>
> I am not too sure about all of this and its making my poor brain hurt trying to express it so ill stop now and maybe you could let me know your thoughts.
>
> Glenn
Glenn (etc.), If still following this thread, you might want to check out the link message at:http://www.dr-bob.org/babble/20050803/msgs/537274.html
Tests in April of 2005:
24-hr UFC cortisol levels: 214 (range 20 - 100)
Late night salivary cortisol: 42 (range "less than 100" - lower than 20 is VG)Started Remeron June 7, 2005.
Tests in mid July of 2005:
24-hr UFC cortisol levels: 97 (range 20 - 100)
Late night salivary cortisol: 17 (range "less than 100" - lower than 20 is VG)Tests in early October 2005:
24-hr UFC cortisol levels: 52 (range 20 - 100)
Late night salivary cortisol: 4 (range "less than 100" - lower than 20 is VG)And my levels prior to April were in the range of 150 to 222 (reference range of 20 - 100).
My highest levels were in September of 2004 with a 287 and a 221 - but that was with a different Lab that had a reference range of 4 - 50, so the actual levels were really much higher than my current Labs show (just muktiply those first two test by two to get a truer idea of how high those initial levels were).
Seems studies showing anti cortisol effectiveness of Remeron clearly have "some" merit.
Elroy
Posted by glenn on October 15, 2005, at 14:07:41
In reply to Re: remeron and cortisol » glenn, posted by Elroy on October 14, 2005, at 21:40:58
I am pleased that the remeron seems to have done the trick for you.
However the ONLY med that did it for me was xanax, strange as it does not have as far as I am aware a particular anti cortisol effect, but then my ilness was rather strange anyway , ie no panic attacks for example.
Still strange though as I said years ago , that if remeron is so wide acting that it does not have a better reputation ?!Glenn
Posted by Elroy on October 15, 2005, at 19:49:01
In reply to Re: remeron and cortisol - The immortal thread ?!, posted by glenn on October 15, 2005, at 14:07:41
> I am pleased that the remeron seems to have done the trick for you.
> However the ONLY med that did it for me was xanax, strange as it does not have as far as I am aware a particular anti cortisol effect, but then my ilness was rather strange anyway , ie no panic attacks for example.
> Still strange though as I said years ago , that if remeron is so wide acting that it does not have a better reputation ?!
>
> GlennWell, many psych docs don't even know about the connection between cortisol (hypercortisolism) and many types of anxiety and / or depression. So why / how would they know about the few studies that show the anti cortisol benefits of Remeron? And if they did know about those studies they would probably think "so what"? Since they don't know about the "cortisol connection" to start with!
As to your Xanax (and mine too as it was the only med that I could initially find that would put the brakes on the raging anxiety)???
Well, it turns out that it too has anti-cortisol benefits. Did you know that, or was your doc aware of actual studies showing that benefit? Want to bet on how many psych docs are completely unaware of that?
Check out:
http://www.anthropogeny.com/A%20Hypothetical%20Explanation%20of%20Panic%20Disorder.htm
In that study it refers to a previous study -
Kroboth, P., Salek, F., Stone, R., Bertz, R., and Kroboth, F. 3rd. Alprazolam increases dehydroepiandrosterone concentrations. J Clin Psychopharmacol. 1999; 19: 114-24.
QUOTE:
Alprazolam increases dehydroepiandrosterone concentrationsKroboth PD, Salek FS, Stone RA, Bertz RJ, Kroboth FJ 3rd. Department of Pharmaceutical Sciences, School of Pharmacy, University of Pittsburgh, Pennsylvania 15261, USA.
The gamma-aminobutyric acid (GABA) agonist alprazolam is known to decrease adrenocorticotropic hormone and cortisol concentrations. Dehydroepiandrosterone (DHEA) is secreted synchronously with cortisol by the adrenal glands and demonstrates diurnal variation.
The major objective of this study was to determine whether alprazolam affects concentrations of DHEA and DHEA-S, the sulfated metabolite. In vitro studies have demonstrated that DHEA-S, and perhaps DHEA, have GABA antagonistic activity. Another objective was to determine whether DHEA-S and/or DHEA concentrations are related to psychomotor impairment after alprazolam. Thirty-eight healthy volunteers (25 young men, aged 22-35, and 13 elderly men, aged 65-75) received a single intravenous dose of alprazolam 2 mg/2 min (part 1).
Fifteen young and 13 elderly men responded to alprazolam and agreed to participate in part 2 of the study, which was a crossover of placebo and alprazolam infusion to plateau for 9 hours. Plasma samples at 0, 1, 4, and 7 hours were assayed for steroid concentrations.
Alprazolam produced:
(1) significant increases in DHEA concentrations at 7 hours in both young and elderly men;
(2) significant decreases in cortisol concentrations; and
(3) no change in DHEA-S concentrations.The relationship between psychomotor decrement and DHEA concentrations at 7 hours after alprazolam 2 mg/2 min was described by a u-shaped curve (p < 0.0047). Both the linear and quadratic components of the equations for the tests were significant (p < 0.002). These results suggest that alprazolam modulates peripheral concentrations of DHEA and that DHEA and/or DHEA-S may have an in vivo role in modulating GABA receptor-mediated responses.
PMID: 10211912 [PubMed - indexed for MEDLINE]
END QUOTESo Xanax too has a track record of being an effective cortisol reducer (note: I personally do not believe that neither Remeron nor Xanax or even both will effectively reduce cortisol in situations where medical Cushing's conditions exist).
Interestingly I too had no real "panic attacks". I would have times when my anxiety levels would "spike" at higher levels, but even then did not experience the classical symptoms of panic attacks... just stronger levels of anxiety.
Also it seems to me that the cortisol reduction ability of Remeron only seems to come into play at doses of 30 mg or higher.
Elroy
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Posted by Pfinstegg on October 15, 2005, at 22:20:02
In reply to Re: remeron and cortisol » glenn, posted by Elroy on October 14, 2005, at 21:40:58
Elroy, those cortisol results are very strong and clear-cut. Did you improve a lot clinically, as far as depression/anxiety?
Glenn (hi!), I think that if you are known not to have some kind of adrenal tumor, but still have either high levels of 24-hour cortisol, a high evening salivary cortisol, or DSM non-suppression, these things point towards HPA over-activity. If you suppress totally or partly on the DSM, I think that's supposed to mean that you have not had HPA overactivity long enough, or severely enough, to have enlarged, permanently over-active adrenal glands. That's good, but the overly high levels of 24-hour cortisol could mean you might be moving in that direction- assuming, always, that there is not another cause, like a pheochromocytoma, or one of the other rare adrenal tumors like carcinoid.
Successful TMS is associated with the return of DSM suppression and low evening salivary cortisols. The TMS is very successful for me- but only for about 6-8 weeks, when I need to return for boosters. i haven't had these values checked during my depression-free periods, but I should do it!
I'm wondering, too, why, if Remeron has such a good effect on cortisol, it doesn't have a better reputation as an AD. Maybe cortisol abnormalities are not the only or most important factors, but things we don't know as much about yet, such as glutamate and calcium channel changes, which may be equally, or more, important. I think the HPA axis plays a role in these, too, but I wish I knew much more than I do.
Posted by Elroy on October 15, 2005, at 22:35:50
In reply to Re: remeron and cortisol, posted by Pfinstegg on October 15, 2005, at 22:20:02
RE: I'm wondering, too, why, if Remeron has such a good effect on cortisol, it doesn't have a better reputation as an AD. Maybe cortisol abnormalities are not the only or most important factors....
Personally, I think that is it exactly. We tend to naturally want to wrap things up into neat little compartments. If the latest med being pushed on the doc by a sales rep is an SSRI then every problem that the doc sees suddenly has to do with serotonin deficiencies. It's the old story... if the only tool you have s a hammer, then suddenly every problem starts looking like a nail.I believe that Remeron has such a poor (fair at best) record as an AD simply because of just what you said. Many depressions and anxieties are NOT related to hypercortisol problems (heck, some depressions are caused by cortisol levels that are on the LOW side). Also, often the elevated cortisol can be as a result of the anxiety or depression and not necessarily the cause of it.
So while lowering cortisol levels would be healthy overall (as excess cortisol does a lot of nasty health things way far and beyond what it does to screw us up psychologically), the lowering of those cortisol levels - if that is the case - would likely not "cure" the anxiety and / or depression.
So, like with so many other aspects, Remeron can be the right tool for the right condition(s) at the right time. Otherwise it might be of some help (simply in lowering unhealthy cortisol levels), and in other cases, be of no help whatsoever.
Personally, I find that in situations where hypercortisolism is not a problem, that I wouldbclassify Remeron as a poor AD at nest. I found that it had some slight anti anxiety effects and that it did very little towards boosting any levels of depression.
Posted by Pfinstegg on October 15, 2005, at 22:42:10
In reply to Re: Remeron and Cortisol - Dexamethasone » SLS, posted by Elroy on September 23, 2005, at 13:05:53
Oh, OK. I jumped in and answered without reading much of the thread. Now I realize that some version of PTSD is what everyone is struggling with. Elroy, I'm assuming that you got accepted into a study at NIH because of the slim chance that you might have some kind of benign adrenal tumor?
These other possibilities- short courses of mefipristone or dexamethasone- would really put us at the edge of safe treatment, because we would likely need repeated courses of treatment- and side effects really do become serious there. I had to take dexamethasone for 10 days last year after lumbar disc surgery (to prevent nerve swelling), and it did have a wonderful anti-depressant effect. I was sorry to stop it, but knew I had to!
Posted by Elroy on October 16, 2005, at 18:37:29
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 15, 2005, at 22:42:10
> Oh, OK. I jumped in and answered without reading much of the thread. Now I realize that some version of PTSD is what everyone is struggling with. Elroy, I'm assuming that you got accepted into a study at NIH because of the slim chance that you might have some kind of benign adrenal tumor?
>
> These other possibilities- short courses of mefipristone or dexamethasone- would really put us at the edge of safe treatment, because we would likely need repeated courses of treatment- and side effects really do become serious there. I had to take dexamethasone for 10 days last year after lumbar disc surgery (to prevent nerve swelling), and it did have a wonderful anti-depressant effect. I was sorry to stop it, but knew I had to!
X
X
X
XActually, no, my original therapist thought that I might be suffering from a form of PTSD but it has since been changed to just GAD. While I had times of higher anxiety levels, I never really had panic attacks either (once I looked into the actual definition of panic atacks, I realized I was just having time periods - anywhere from a couple hours to a full day - of higher anxiety).
Also, elevated cortisol levels (actual hypercortisolism) are frequently found in cases of depression. In fact, I'll go out on a limb here and state that probably more frequently in cases of depression than in cases of anxiety! Almost all of the testing being done with RU-486 (with the purpose of lowering cortisol while "re-setting" the HPA Axis) has so far been done with depression patients.
As to the "repeated courses" of the short-term treatments, I have no doubt that would be necessary for some treatment resistant patients, I have yet to come across study data that indicates that is a necessity for most patients treated with RU-486 anyway. In fact, there's some inference that in many patients a single short-term protocol has resulted in the re-setting of the HPA Axis which then allowed the depression (and one assumes also anxiety) to go into remission.
Obviously most of this study info is so new that follow-ups to ascertain how long the remission lasts, what follow-up protocols are necessary, etc. simply haven't come to pass yet.
Elroy
Posted by 4wd on October 16, 2005, at 22:37:12
In reply to Re: remeron and cortisol - and Xanax.... » glenn, posted by Elroy on October 15, 2005, at 19:49:01
Do you think other benzos such as Klonopin might have the same effect?
Is it possible that just reducing the anxiety (by taking the benzo) itself lowers the cortisol, since cortisol production is a result of increased anxiety? So when you lower the anxiety, the cortisol drops as well?
Marsha
Posted by 4wd on October 16, 2005, at 22:41:59
In reply to Re: remeron and cortisol » glenn, posted by Elroy on October 14, 2005, at 21:40:58
, you might want to check out the link message at:
>
> http://www.dr-bob.org/babble/20050803/msgs/537274.htmlHi Elroy,.
After reading this article, I wonder whether taking DHEA supplements would help anxiety - if the problem is connected with an imbalance in the ratio between cortisol and DHEA?
Marsha
Posted by Elroy on October 17, 2005, at 12:50:27
In reply to Re: remeron and cortisol - and Xanax...., posted by 4wd on October 16, 2005, at 22:37:12
I am not aware of any studies showing that specific effect with Klonopin.
While I am sure that to some extent lowering anxiety levels will help moderate cortisol levels at least partially, it is clear - from this study - that Xanax has a specific anti cortisol effect beyond just its anti anxiety effect.
That is because the clinical study used healthy individuals (a combination of young adults and elderly persons as I recall), and tested their cortisol levels and DHEA levels following administration of the Xanax.
What was interesting was that DHEA-S levels remained unchanged while DHEA levels increased and cortisol levels decreased. That would clearly indicate that the Xanax was performing some type of process of converting the cortisol to DHEA (as otherwise an increase of DHEA-S would be needed to account for the increased DHEA).
Elroy
Posted by Elroy on October 17, 2005, at 13:03:59
In reply to Re: remeron and cortisol, posted by 4wd on October 16, 2005, at 22:41:59
I am not totally sure, but I don't believe so. I think that taking DHEA supplements can help promote a better DHEA-to-Cortisol ration... but doesn't necessarily LOWER existing cortisol levels... (also with the understanding of DHEA supplementation being within reasonable dosage ranges - DHEA can promote androgenic side effects in women and raise estrogen levels in males if taken at higher doses - like 50 - 100 mg daily).
Again, we're also talking about situations here where the patient doesn't simply have high normal cortisol levels from general day-to-day stress, etc., but situation where one's HPA Axis is dysfunctional and creating a hypercortisolism condition. If your cortisol levels were (let's say) twice the normal maximum of the reference range, what would the object of supplementation be? To get one's DHEA levels over twice the maximum of its reference range?
Generally DHEA-to-Cortisol ratio levels become an important issue when one has normal range cortisol but abnormally low DHEA. In those cases supplementation of DHEA (again, done very reasonably) would help re-establish the proper ratio, but whether that would aid in lowering anxiety levels, I couldn't say.
I know that often warnings are given with DHEA supplementation as far as taking it in the mornings as it can be "stimulating" and interfere with sleep. I know that sounds like Tyrosine to me. And I know that taking Tyrosine (in anything above 125 mg doses) increased my anxiety.
I am currently taking DHEA at the rate of 25 mg a day (12.5 mg in the morning and another 12.5 mg in early afternoon). At those levels it has not worsened my anxiety... but it has not improved it either.
Elroy
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X> , you might want to check out the link message at:
> >
> > http://www.dr-bob.org/babble/20050803/msgs/537274.html
>
> Hi Elroy,.
>
> After reading this article, I wonder whether taking DHEA supplements would help anxiety - if the problem is connected with an imbalance in the ratio between cortisol and DHEA?
>
> Marsha
>
Posted by Elroy on October 17, 2005, at 13:24:44
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 15, 2005, at 22:42:10
First of all, a correction....
See: http://www.dr-bob.org/babble/20051017/msgs/568145.html
There was a change in reference range used by Lab and results should read:
Tests in early October 2005:
24-hr UFC cortisol levels: 52 (range 4 - 60)
Late night salivary cortisol: 4 (range "less than 100" - lower than 20 is VG)
As to NIH, well, I got accepted not because of a "slim chance" of an adrenal gland tumor, but because there DEFINITELY is a an adrenal gland tumor present!
It was located by CT Scan in September of 2004 and confirmed by follow-up CT Scan in April of 2005. It was initially assumed that the highly elevated cortisol must be Cushing's from said adrenal gland tumor... but advanced tests didn't corroborate that. My first round of testing (say September thru November of 2004) showed results that were all over the place. Most tended to indicate that it was pseudo cushing's versus medical cushing's... but the couple results that were borderline tended to indicate more likely being cushing's disease rather than cushing's syndrome (i.e., caused by a pituitary tumor rather than an adrenal tumor).
My one endocrinologist is convinced that the adrenal gland tumor is simply an "incidental, fatty-tissue lesion that is not only benign but is biologically inactive".
Anyway, the study at NIH is for all types of adrenal gland tumors. Why are some benign and others malignant. Why do some develop cushing's syndrome while others don't. Why do some develop into pheo tumors while others don't. Why are some simply "incidental, fatty-tissue lesion that are not only benign but is biologically inactive".
Elroy
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> Oh, OK. I jumped in and answered without reading much of the thread. Now I realize that some version of PTSD is what everyone is struggling with. Elroy, I'm assuming that you got accepted into a study at NIH because of the slim chance that you might have some kind of benign adrenal tumor?
>
> These other possibilities- short courses of mefipristone or dexamethasone- would really put us at the edge of safe treatment, because we would likely need repeated courses of treatment- and side effects really do become serious there. I had to take dexamethasone for 10 days last year after lumbar disc surgery (to prevent nerve swelling), and it did have a wonderful anti-depressant effect. I was sorry to stop it, but knew I had to!
Posted by Pfinstegg on October 17, 2005, at 15:53:31
In reply to Re: Remeron and Cortisol » Pfinstegg, posted by Elroy on October 17, 2005, at 13:24:44
Because your situation is a little uncertain, as to whether there may be a physical cause for your hypercortisolism, I think it's great that you will get a really thorough work-up at NIH. My endocrinologist made some inquiries about my doing the same, but I didn't qualify, as everything (physical and psychological) pointed towards PTSD and trauma from csa. Will you be going soon?
It would be so wonderful if Mefipristone just required one treatment course to reset the HPA axis. Since it is "fast-tracked", we should be hearing more information about it soon.
Posted by glenn on October 18, 2005, at 6:44:23
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 17, 2005, at 15:53:31
Just as an interesting addition to this thread, I use xanax in what Dr Shipko calls the "anti biotic method" which sounds a bit like the previous descriptions of steroid use.
That is I take a short course when needed.
Short course means 3-4 days only.
The effect of this can last as long as 3-4 months or as little as 2 weeks, and I actually feel even better on the day I stop the Xanax.
Could it be that the xanax is (temporarily) resetting something, ie the HPA axis.
In my case it must be permanently weakened as a resetting is needed every so often, but xanax has never failed yet, and at a low dose ( 0.375- 0.5 mg)
It is massively more effective for me than remeron, but then again I guess my symptoms were rather strange and not particulary depressive.Glenn
Posted by Elroy on October 18, 2005, at 13:57:07
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 17, 2005, at 15:53:31
Will be going in December.
Yes, would be exceptional if most patients would require not much more than one or two short-term treatments with RU486.
Is your endocrinologist continuing testing for cortisol? At a minimum, every two to three months you should have a 24-hr UFC and a late night salivary cortisol (done on the same night that you are doing the UFC), just to see where you're at and to see if a Cushing's condition might be devceloping.
Also, if your endo is convinced that it is a pseudo cushing's situation (i.e., hypercortisolism due to a psychological disorder) has he considered applying for a compassionate use waiver from the FDA through the Feminist Majority? I have all of the contact info if you think that he / she might be convinced to give that therapy a try....
Elroy
P.S. I take it that an adrenal gland tumor has definitely been ruled out in your case?
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X> Because your situation is a little uncertain, as to whether there may be a physical cause for your hypercortisolism, I think it's great that you will get a really thorough work-up at NIH. My endocrinologist made some inquiries about my doing the same, but I didn't qualify, as everything (physical and psychological) pointed towards PTSD and trauma from csa. Will you be going soon?
>
> It would be so wonderful if Mefipristone just required one treatment course to reset the HPA axis. Since it is "fast-tracked", we should be hearing more information about it soon.
Posted by Elroy on October 18, 2005, at 15:08:37
In reply to Re: Remeron and Cortisol- XANAX treatment, posted by glenn on October 18, 2005, at 6:44:23
Really couldn't say. I have been on Xanax XR (1mg x 2 daily) constantly for about a year now and can only note that if Xanax did have any controlling effect on my elevated cortisol that the effect was quite minimal.
I think that unless one is consistently tracking their cortisol level that the reality is that they don't really know if they have a cortisol problem or not.
And if they do have hypercortisolism then advanced testing is imperative to see if the problem is primarily medical or primarily psychological.
It is my belief that if the problem is primarily medical (i.e., caused by a tumor, etc.), then neither Xanax or Remeron is going to provide a salvation. Something like RU486 "might", but then only with long-term usage which opens the door for lots of nasty side effects.
If primarily psychological, then I believe that ultimately medications such as RU-486 (and some other interesting ones on the horizon) might very well be a God send for those conditions that are indeed related to hypercortisolism conditions.
Elroy
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X> Just as an interesting addition to this thread, I use xanax in what Dr Shipko calls the "anti biotic method" which sounds a bit like the previous descriptions of steroid use.
> That is I take a short course when needed.
> Short course means 3-4 days only.
> The effect of this can last as long as 3-4 months or as little as 2 weeks, and I actually feel even better on the day I stop the Xanax.
> Could it be that the xanax is (temporarily) resetting something, ie the HPA axis.
> In my case it must be permanently weakened as a resetting is needed every so often, but xanax has never failed yet, and at a low dose ( 0.375- 0.5 mg)
> It is massively more effective for me than remeron, but then again I guess my symptoms were rather strange and not particulary depressive.
>
> Glenn
Posted by Pfinstegg on October 19, 2005, at 7:55:58
In reply to Re: Remeron and Cortisol » Pfinstegg, posted by Elroy on October 18, 2005, at 13:57:07
Yes. I did have a negative MRI. Also, I have OK 24-hour cortisols (40), but have DST non-suppression and high evening salivary cortisols. But you are right - TMS has been an excellent treatment for me; with remissions of 6-8 weeks every time I receive it. I should be going back for DST suppression tests and salivary cortisol checks to see if it has changed those back towards normal during the time I am feeling depression-free. It has been reported to do that when it is successful- and I would like to know.
I wish you the very best during your December work-up at NIH. I hope they rule out all those rare tumors, and also help you develop the best treatment plan for yourself. I wonder whether they will point you towards Mefipristone. Please keep us informed.
Posted by Elroy on October 19, 2005, at 18:00:51
In reply to Re: Remeron and Cortisol » Elroy, posted by Pfinstegg on October 19, 2005, at 7:55:58
To tell the truth, I am about at the stage where I hope that they (NIH) declare that the tumor that's already known to be there (left adrenal gland) is responsible for what's causing the hypercortisolism (and thereby the anxiety and other physical symptoms) and recommend surgical intervention. As part of the study, if surgical intervention is recommended they will do it there for free.
Right now that seems to be the simplest solution to a very complex problem. Otherwise I don't really know what the "game plan" would be. Continuing on Remeron long-term isn't a reasonable option (too many negative SEs). A trial of RU486 would be interesting but the chances of getting one of my several doctors to actually go that route seems pretty remote for now (seeing as it's still in the testing process for psychological disorders)... unless NIH would come up with a recommended protocol - in writing - to try for RU486, something that I could bring back to my docs....
Anyway, it sounds like your problem isn't so much with a dysfunctional HPA Axis that is causing a condition of hypercortisolism (since your 24 hr UFCs have been normal), but more that of an HPA Axis that has caused your normal secretion cycle to go haywire (as in causing your nighttime levels to be high, which means that at some points during the day your secretion levels are much lower than they should be).
I am the opposite whereby my total cortisol levels are quite high but nighttime salivary cortisol tests are low, well within the lower third of the normal range (not in general, but specifically for late night levels).
Well, we will see.
Will be interesting when the Remeron gets stopped here in a couple of weeks. I imagine that insomnia will revert back to being a problem.
Elroy
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