![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by Cseagraves on March 7, 2009, at 18:49:54
Hey to all!
Well, finally after a year and a half a living hell, I finally got a real diagnosis (after several misdiagnosis). I have Post Traumatic Stress Disorder. Unfortunately all the meds they use to treat this I cannot take.
I know it has been awhile since I posted, and I missed everyone terribly, but I had to do some soul searching to try to figure this one out.
What it has come down to is this:
The only med I can take that I don't seem to have a bad reaction to is zanax and I can only take low doses of those. (Have tried literally everything at this point. Ssri's and all others are just out) My pdoc said that only about 60% of people respond to any kinds of meds so we'll have to find a different approach. (Have put Marplan on the backburner for now, but will not completely rule it out if all else fails.
Have to find a psychologist who specializes in PTSD for some intense therapy. Also trying homeopathic approach. Anyone here with experience with therapeutic doses of St. Johns Wort? Read that it works like a mild maoi.
Am also in the process of being treated for adrenal fatigue syndrome. So hopefully, that will straighten itself out soon.
Hope everyone else is doing well.
Courtney
Posted by bleauberry on March 8, 2009, at 8:54:42
In reply to FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Cseagraves on March 7, 2009, at 18:49:54
> Have to find a psychologist who specializes in PTSD for some intense therapy. Also trying homeopathic approach. Anyone here with experience with therapeutic doses of St. Johns Wort? Read that it works like a mild maoi.
>
> Am also in the process of being treated for adrenal fatigue syndrome. So hopefully, that will straighten itself out soon.
>A few things jumped off the page at me and I just wanted to offer possible comments.
St Johns Wort is worth a try. Start low, go slow, find your own personal therapeutic window. The instructions are wrong. People vary in their response to SJW with some doing great at 150mg and worse at higher doses, others needing the full 900mg (300mg X 3 per day), and many people find the 600mg range just right.
Different brands are like different drugs. Similar, but different. Some people respond better to the inexpensive RiteAid or WalMart brands, and some people respond better to the clinical brands (Kira or Perika). Some people get worse on one and better on another.
I've been dealing with adrenal fatigue for a few years and I have spent hundreds of hours at forums that specialize in cortisol and thyroid issues. I can tell you the vast majority of people get minimal help from common things such as herbs, adrenal cortex extract, Isocort, or licorice. Licorice is sometimes helpful in combination with other things, and of course there are people that do ok with something like an Isocort+Licorice combination. But the point I want to make is that the great majority of people do not get better until they do the real stuff...prescription oral dosing of Hydrocortisone in daily doses of 1.25mg to 20mg per day. Those are physiological replacement doses, just replacing what is missing.
Many people find that after a year of HC they can carefully slowly wean off and be fine. Many never got anywhere with any other treatments. If your doctor is taking you down the road of herbs and extracts and such, the odds are poor. That's just based on real people experiences, which is different than doctors' hopes and imaginations.
By the way, Xanax will in its own way make the treatment more difficult. When it is working, it squashes down cortisol. Yours is already down to begin with. When the last dose of Xanax begins to wear off, there is a cortisol rebound, where large spikes of cortisol increase and it puts a heavy demand on the adrenal glands. That is part of the rebound anxiety felt when a dose wears off. Xanax may be be helpful in other ways to you, but is not going to complicate the adrenal fatigue thing.
One other point. It is usually assumed that if you have low cortisol your adrenal glands are worn out. What is often overlooked is that the adrenal glands might be just fine, but that they are getting faulty instructions from the headquarters...the pituitary gland. Common things that mess up the pituitary instructions sent out is heavy metals from amalgam fillings and hidden chronic bacterial infections that have been unsuspected.
As for the diagnosis itself, I am in the minority when I say I do not believe in labels like that. Call it whatever you want...depression, anxiety, bipolar I, bipolar II, schizophrenia, fibromyalgia, chronic fatigue syndrome...all these things are mysteries. That is, no one knows what causes them and no one knows how to cure them. All they know is that some medications might, maybe, help you feel better and maybe could make you worse instead. Each cluster of mysterious symptoms gets a name, just so we can call it something. In the real world, outside of clinical settings, labs, and pinhead researchers, real people respond to things that have no relation to the so-called diagnosis. For example, Gabapentin for depression, when nothing else worked. Lithium for anxiety when nothing else worked. Provigil for depression when nothing else worked. Tramadol for treatment resistent depression discovered by accident when someone was prescribed it for post-op pain. Ya know? This stuff happens.
Posted by seldomseen on March 8, 2009, at 9:57:02
In reply to FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Cseagraves on March 7, 2009, at 18:49:54
You might want to talk to your doctor about propranolol.
Posted by Phillipa on March 8, 2009, at 11:13:06
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO? » Cseagraves, posted by seldomseen on March 8, 2009, at 9:57:02
Glad you got a diagnosis weren't you going on an MAOI? Phillipa
Posted by Extreme on March 8, 2009, at 11:37:35
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by bleauberry on March 8, 2009, at 8:54:42
> By the way, Xanax will in its own way make the treatment more difficult. When it is working, it squashes down cortisol. Yours is already down to begin with. When the last dose of Xanax begins to wear off, there is a cortisol rebound, where large spikes of cortisol increase and it puts a heavy demand on the adrenal glands. That is part of the rebound anxiety felt when a dose wears off. Xanax may be be helpful in other ways to you, but is not going to complicate the adrenal fatigue thing.
bleauberry:
Thanx for sharing and confirming what I have experienced the last years on bensos! However, I myself believe that I have sky-rocket of amounts of cortisol within me. I recently actually tried propranolol as seldomseen suggested but with bad results. It seemed like the prop gave rise to a similar problem as with bensos... a sort of "build-up" in the high-energy/high-alertness occured AFTER a short time of relaxation and finally manifsted itself as a WORSE attack of high energy than usual. That is often what happens on benso even after very limited use.
Let me add to this what I myself believe is maybe a crusial part in this. I dont have a diganose of ptsd but I have reason to believe that could be happening to me. Anyway... on high dosage of benso the "histamine turnover" occurs.. I got this explained from a girl in here at some time what it actually meant. The way I understood it is that high doses of benso lowers the histamine in the nervous system... which would make complete sense in my case because when I have allergi (which started in february here... pollen) I have to use TRIPLE doses or even higher on bensos to get SOME effect whatsoever. AND more to that... I am also insensitive to any kind of gaba-agonist (like kava kava or L-theanine) when I have allergy suggesting that my system is totally poisoned by histamine when it occurs AND that my histamine-system it totally freaked out in "normal" mode too... because I get SO different effects from benso when ON allergy and OFF it so to speak. When I have allergy there is NO "build up" of bad energy within me AND NO paradoxal effects even on the high doses. This is really complex :S
I felt very lucky when I two weeks ago (!) discovered that a company in my part of the world (sweden and nordic countries) have released a supplment containing Amine oxidase (brand name is "camucin" btw), one of the enzymes that break down histamine!! This I believed would never ever reach some open market other than maybe the medical market.. but here it is, approved in this part of the world in 2006 (though seems limited to only some EU-countries)! I have just now recently begun with it. It is formally for food-allergy (I have IBS btw) but some doctors recommend it for several "atypical" or severe allergies. I can only hope that this can better my stomach (which is one of the main problems in my life specially when the damn allergy makes it worse!)... and I hope it gives a real good chance to affect the other stuff (the "super-high-energy" that makes relaxation a work of art for me). Would be nice if it would do anything with my fibromyalgi too.
As you say bleauberry , no one knows the truth about this stuff or what happens in our bodies... one is LUCKY if running into something that actually helps. The only thing that kicked everything to compelete oblivion wihtout side-effects was melatonin the few times it actually worked in the past... I have my hopes on Valdoxan due to that :)
I do hope that my post here can help someone out there in some similar complex situation. If there is a link between primary histamine and cortisol and then into everything else... maybe in my case. I even thought of this type of connection too:
http://en.wikipedia.org/wiki/Histamine_H3_receptor
Now, that is an intersting histamine-receptor...
Posted by Cseagraves on March 8, 2009, at 13:41:49
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Phillipa on March 8, 2009, at 11:13:06
Hi Phillipa!
Tried to start me out on Marplan, but dose must have been to high because within 4 days I was extremely ill (10mg daily).
I've gotten to the point where I am to afraid to try anything because I have such awful side effects, but will look further into the propranolol.Courtney:-)
Posted by Cseagraves on March 8, 2009, at 13:50:20
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Extreme on March 8, 2009, at 11:37:35
Bleau and Extreme,
I''m abit confused by your post concerning zanax and cortisol. My cortisol levels are high, not low due to high stress levels. (had them tested).
As far as zanax, my dosage is .5 during the day and 1.5 at night for sleep. Have tried everything else for sleep and nothing works that I don't have bad side effects.
Are you saying that at the dosage of zanax could be causing a problem, like making anxiety worse?
Courtey
Posted by Extreme on March 8, 2009, at 14:43:04
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Cseagraves on March 8, 2009, at 13:50:20
> Bleau and Extreme,
>
> I''m abit confused by your post concerning zanax and cortisol. My cortisol levels are high, not low due to high stress levels. (had them tested).Yea... its kind of messed up and complicated with this stuff. Ah, intersting! Never had mine tested. Though I am kind of surtain they are really high too OR that they fluctuate between different levels very fast.
> As far as zanax, my dosage is .5 during the day and 1.5 at night for sleep. Have tried everything else for sleep and nothing works that I don't have bad side effects.
> Are you saying that at the dosage of zanax could be causing a problem, like making anxiety worse?
>
> CourteyYea... COULD. Benso (xanax/valium/etc) does lower the cortisol-levels which then rises/spikes when the drug leaves the system. However... as you are taking it daily.. hm... maybe bleauberry could fill in here what happens then? I mostly take benso for a short period then holds up and so on.. so my thinking is limited to those parameters.
I consider my histamine-theory being kinda isolated to a "case of myself" due to the apparant connection with pollen-allergy.
Posted by Extreme on March 8, 2009, at 14:54:11
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Cseagraves on March 8, 2009, at 13:50:20
Cseagraves:
Even though I think something serious is wrong with my inner chemistry THE only diagnosis that would fit my personality and my behavior (and my history in this life) is the same one you got.. Post Traumatic Stress Disorder.
Just wanted you to know it.
Posted by Cseagraves on March 8, 2009, at 18:07:09
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Extreme on March 8, 2009, at 14:54:11
Extreme,
Thanks for the info and input.
We've probably got alot in common. Yes, mental, physical and emotional abuse as a child and as a teenager. Highly stressful life as a child and as a teenager. Also more highly stressful situations as an adult. Went to several pdocs, all putting me on their usual regime of crap.
Some things worked for awhile about 7 years ago, but everything started to poop out. Anxieties would override pretty much every med. Stronger stuff would make me really ill. I finally stepped back and started to analyze what the hell was going on.
Went to a different doc who basically put it all together. He told me after listening to my history that I have been in "Fight or Flight" mode for most of my life. Physically and emotionally I was worn out. WOW!! I had never looked at it that way, but then a light went on in my head as I started to back track all of my lifes events. When my new therapist said PTSD everything seemed to make sense. Especially when he went down the list of what causes women to have PTSD.
I had never learned coping skills.
I had major anger issues because as a child, thats how I was taught to deal with things.
I now live in a constant state of fear that I can't seem to get rid of. (fight or flight)I have been diagnosed with just about everything. Depression, anxiety, bi-polar (fought the doctor on that one). So yeah, I've had some issues but I believe, for me, if I had realized I had these issues 20 years ago, then I would have addressed my situation totally different.
And instead of ever putting that first anti-depressant in my mouth 10 years ago, I would have sought out behavior therapy. At that time, I was in total denial that anything was wrong with my behavior. I started on the anti depressant to pacify my husband.
Unfortunately, thats when the viscious cycle started. Zoloft worked well for a couple of years, but as more stressful sitations came along, I had to switch around to other ones. I had awful side effects with the several ones I tried. Switched pdocs. New pdoc said "bi-polar". I laughed at him. Tried Geoden and Seroquel just to pacify him. Both made me both severly ill and just plain crazy. Thought I was losing it. Never went back to see him.
Even tried Marplan. After 4 days had to come off. Violent reaction.
I also got sick trying remeron, trazadone and valium. The only thing I can seem to tolerate at low dosages is xanax.
So I started thinking. Maybe the reason I don't tolerate any of these meds well is because I might not have a chemical imbalance and I don't need these meds. I came off of everything except my xanax. Would take .5 during the day if needed and 1.5 at night to sleep. (Because nothing else seemed to work for me as far as sleep.) I didn't understand why I would wake in the morning anxietal.
Now after reading some of the post here on xanax, maybe thats why I haven't been able to get rid of some of these anxietal feelings that I have during the day. Didn't ever think that my xanax could be causing these effects. So I guess I'll start weening off of it now.
I decided after the Marplan incident about 4 weeks ago, that I was done. Tired of feeling like crap all the time and I was also just physically and mentally worn out from all the meds. I just don't feel for me that it is a chemical imbalance, but more of a mental core imbalance that just needs conditioning.
I found a great therapist whose specialty is PTSD, am using homeopathic approach to meds, started reiki therapy, and I stopped smoking two weeks ago after over 30 years of smoking which can increase anxiety. (Allen Carrs - Stop SMoking Now book) if you know someone who wants to stop. Great Book!!!!
Also, reconnected with my spirituality. Had to be reminded that its all about Mind, Body and Spirit. Everything needs to be balanced.
Anyway, that's my approach for now and I am hoping this will work. I just want my life back as I am sure many of us here do.
I hope you are in a good place or at least are heading there.
Everyone here has always been very helpful to me and I appreciate you taking the time to post.
Take Care,Courtney
Posted by Extreme on March 8, 2009, at 19:37:00
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Cseagraves on March 8, 2009, at 18:07:09
Cseagraves:
You have been through a lot...
Well. To make a long story short. Tough childhood and all of that. I gained the upper hand in my life through different ways... the end justified the means and I have many times used very radical ways in handling this life. Many times with great success in the way my life actually turned out. If I had NOT walked my own way in this life and instead followed some "advices" from some people on the road... it would not be that great I can tell. And without some people this life wouldnt be worth living.
The scary part is that I do not know how much I can do in this life... I can do a lot... but will it be enough.. I imagine and feel that its worth every try... whatever the outcome. If you have done your best.. well.. then there was nothing more you could have done. Yea... the part of "accepting"... its the hard part isnt it.. it sure is for me!
<Anyway, that's my approach for now and I am hoping this will work.
And it sounds great.
<I hope you are in a good place or at least are heading there.
Thanx. I sure am.
Posted by desolationrower on March 9, 2009, at 2:39:54
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by Extreme on March 8, 2009, at 19:37:00
hm...
usually PTSD is low-cortisol state...was DHEA level tested as well?
histamine in the brain and body are part of very different systems-d/r
Posted by Extreme on March 9, 2009, at 3:18:15
In reply to Re: FINALLY GOT A DIAGNOSIS - NOW WHAT TO DO?, posted by desolationrower on March 9, 2009, at 2:39:54
> histamine in the brain and body are part of very different systems
>
> -d/rYea.. they are... thats the strange part of my allergy..
This is the end of the thread.
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.