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.
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> 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.
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> 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.
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> 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.
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> (*) 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)....
poster:Elroy
thread:124535
URL: http://www.dr-bob.org/babble/20050921/msgs/558306.html