Friday, November 11, 2005

ptsd and meds

[2/2010: one reader asked for people to share what has and has not worked for them concerning meds. If you have had good or bad experience with any particular prescribed meds, share it in the comments please.]

I've been some sort of human guinea pig for the better part of a decade. After one trip to the mental hospital I went on Prozac when that first came out. I didn't like it and quit after a few months. At the time I had no insurance to speak of and didn't trust the mental health profession at all. A few years later, I was trying to get things under control and got diagnosed with Obsessive Compulsive Disorder (OCD). They put me on a clinical trial for a drug that was used for something else altogether. I got markedly suicidal, and when I reported that, the doctor would interpret his questionaire number scores and say I was improving, completely ignoring what I was saying! I discontued the drug and the trial. A year or so later, I went to a shrink. The shrink sent me to a psychiatrist, who was this guy who smoked in his office. He barely even met with me and put me on Zoloft. I took it and got suicidal. He upped the dosage, things got worse, so he upped the dosage again and things got worse again. He wanted to up it some more. At this point I quit...He wasn't paying any attention to what was going on with me, just following some formula with the drug being pitched by the pharmaceutical companies that week.

A few years later, right before the ptsd got really bad I decided to go back into therapy, this time with a psychiatrist so he would actually listen to what I was saying. The guy wanted to put me on Celexa and pulled out this tinker toy model of a neurotransmitter reaction (serotonin reuptake inhibition, to be exact) that was right out of the Parke Davis sales kit. It was like Amway or a tupperware party or something. He turned out to be a real jackass and I cursed him out and left mid-session after he did something really unethical concerning my privacy.

After that the ptsd kicked in with the flashbacks and all the other stuff I described yesterday. I didn't want to take any drugs at this point, but we were desperate. My wife did some research and found out some stuff about picking psychiatrists and psychologists and called around, interviewing some people. We finally found a good psychiatrist and therapist. The psychiatrist actually listened to what I said about the previous drugs and tried one that acts on something other than serotonin. So we started with effexor. No side effects from this, but not much in the way of front effects either. I had done some research and suggested we try Naltrexone, a drug used to stop cravings in addicts, thinking that some of my problems (picking and ripping out skin, compulsive masturbation) were maybe related to addiction problems) It helped with those things a little, but not with the main problems.

Then I went to the treatment center I mentioned yesterday, and there they slowly got me on a total cocktail: Effexor, Naltrexone, Wellbutrin, Trazadone to sleep, and zyprexa, an anti-psychotic that finally helped with the flashbacks. Later, we switched the zyprexa to geodon, a related anti-psychotic without some of the side effects. Then a year or so ago, we added seroquel to the mix at night and I worked my way off the trazadone. That helped with the intrusive thinking. So until recently my drug cocktail looked like this: 450mg Welbutrin, 300mg Effexor , 100mg Naltrexone, 140mg Geodon, and 100mg Seroquel. I finally started to get some stability.

My favorite discussion of the drugs is the two anti-psychotics, because the doctors always said it like one word: It is an anti-psychoticbutyournotpsychotic. The flyers for these (the seroquel and the geodon) are kinda scary, because the FDA hasn't approved them for anything but schizophrenia, so that is all they talk about. A little searching around on the web showed anti-psychotics were being tried for ptsd as a "second line" if serotonin-reuptake inhibitors like Prozac and Zoloft didn't work.

Lately I have been trying to cut down some of the dosages. We started with the Geodon, because that made me dopey and gave me a real flat affect. Got that down to 20mg, but the ptsd, depression, and anxiety started to come back so the dose went back up to 40mg. That seems ok. Now We are trying reducing the Seroquel, the other real powerful one. I am down to 50mg on that and so far so good.

[update...Feb. 2010. I am off the Seroquel, but had to reintroduce the Trazodon...I know split the lowest dosage pill (5MG?) in half and take one of those to sleep. Just can't seem to sleep otherwise. I take Seroquel about once every three months or so if I have a really bad day and I'm having intrusive thoughts that won't stop through non-chemical means. Most recently, I phased out the Naltrexone, which seemed to make no difference. Earlier, when I tried to get off Effexor, it was a disaster, so that is staying for the foreseeable future. You should read the two posts on Effexor (Battle of the Effexor and Joy of Meds: Effexor withdrawal) BEFORE going on it, though, so you know what you are in for. So now the cocktail is 40mg Geodon, 150mg Effexor, 300mg Wellbutrin, and 2.5mg Trazodone.] Mazeltof!

What is it like taking so many drugs? My sex drive changed a lot...It kind of went to hell for the most part, but the compulsive parts stopped too, so its a mixed bag. It takes me a year to pee -- no water pressure, -- and I am constantly mildly constipated (sorry for the details). People have noticed I am a lot livelier since cutting down on the geodon, so that is good. Ultimately I'd love to be off them all, but that might not work, and at this point I am willing to face that rather than facing a return to the worst of the ptsd symptoms.

It kind of sucks to have gotten sober for so long and then be reliant on drugs to be able to function, but that is the way it goes. Anyway, any 12-stepper who actually reads the literature knows that if a doctor tells you to take a medicine that you take it, as directed, which is what I do. Some 12 step folks think it is cheating or a cop out, but they don't have to scrape me up off the floor after a flashback either so they can go s....well never mind.

For me, the point of all this is that it paid off to be persistent in finding good people to help me and to have some really supportive people around. I have been really lucky that way. 12 step people talked about being there, but weren't. I was sober for a long time and it freaked people out that I was having problems. Some of them were nice and understanding, but the people that took care of me for real had nothing to do with 12 step programs. They just talked the talk with me and seldom came through. I don't want to get too down on the program, because it did save my life earlier, but it also really screwed me up in terms of trauma and recovery from it. Maybe I'll go into that some other time.

Also, I am privileged. I am at a point in life where not only do I have people that care about me enough to give me the support I need (a lot less these days), but I have insurance to cover the therapy and the real expensive drugs, and found the financial wherewithal to go to treatment even when it wasn't covered by insurance (even though we went into lots of credit card and family debt...my wife's family...my family wouldn't acknowledge that there was a problem). If I hadn't gotten those things, I'd probably be dead, locked up, or homeless. So I am pretty privileged to be walking around and functioning like a regular human being, and I think about that when I see people who are homeless or down and out. That's something I'll have more to say on at some point.

Anyway, if you have read this far, thanks! Let me know that you read it, ok?

13 comments:

jackie said...

My hear breaks for you but I am glad you have some help now. I have PTSD among other things after the death of my son and nobody will help me.It was helpful to read your life and I wish you the best. I only wish someone cared enough about me to help me a little. I am also a drunk and self-medicating seems to be the course of treatment even though I get 1x weekly therapy it is not enough. I can't afford any more then that.

Anonymous said...

I just found you through a google search. Congratulations on doing so well. I also have friends and insurance and appreciate that I have the resources to maintain. Keep being thankful and hang in there. You are worth it.

Ann

RayJoha said...

Hi everybody. I in in my fourt week of a trial with daytime use of the alpha blocker called Prozanin. It has almost stopped flashbacks and my startle responses. Intrusive thougths and trauma memories are down too. I cannot describe how this has changed my life. From several times a day pseudo-seizures, (30 minutes or longer), to once maybe twice a week of. They are even shorter in length than before. Today I`m at 3 mg 3 times a day.

GettingBetter said...

Glad to hear meds are helping. Life with fewer flashbacks is such a relief. I hope they continue to recede!

Lisa said...

Hi :)
I am a complex PTSD'r myself as well as a brand new therapist. I am finding your posts brilliant, warm, informative and honest. You have a way of expressing that is both comforting me and educating me. Helping me help myself and my current and prospective clients. Thank you! I need to constantly be educated and enlightened. Thank you for doing this for all of our sakes.
Lisa

GettingBetter said...

Well you are welcome! The feedback I have gotten for posts I originally wondered about whether anyone would relate has been a great reward of this blog.

RayJoha said...
This comment has been removed by a blog administrator.
Curt said...

How do you choose between a zombie with no feelings or the ptsd symptoms. what do you do when meds seem to cause there own issues. lost and confused in this mad world.

GettingBetter said...

hey Curt,
The takeaway point from my experience was to find a doctor who actually listened to me. once I got one, we adjusted dosages and tried combinations until I got relief from the symptoms without being zombified. I really did not want to be on meds. Once I got a combination that helped and reduced the dosage as mucb as I could along with the psychiatrist's guidance I got a reasonable balance between relief from symptoms and not too much side effects. it took a long time to get right. the process is painfully slow but if yr doc listens you can get it right eventually. if you are zombified, tell your doc and if she or he does not listen and try to solve the problem, get another doc.

Anonymous said...

Dolores here, I have almost been killed by medication and/or side effects. There are so many medications, especially the antipsychotic class that are used in ptsd as an off label. It is hoped to help with the depression, since major depression is a diagnosis given. I wish talking to a psychiatrist did not mean automatic add on medication or increase in current dose.
I also understand and sympathise with what happens when health insurance is an issue. somehow i feel people who suffer from ptsd are in a cast that is hard to treat and results in a shot gun approach to medical managenment. diseases like diabetes, heart disease are easy to physiologically understand but not so with ptsd. the brain is the last frontier, i just hope it is settled before this disease takes me, medicine and all.

workingthrough said...

I have been taking meds since I was 11. I have tried every anti depressant out there and none have helped. I tried Celexa last and it really messed with my body. I not only didn't want to eat I couldn't make myself eat. I got horrible hearaches which I got everyday but seemed worse after I started the med. I looked online and it had happened to a lot of people. I do take Geodon because something when I'm at a very bad part of my PTSD I can see hear things. It has done wonders for that and I have never noticed any side effects.

Anonymous said...

Hi, I just want to thank you for this blog and congratulate you for working so hard to cope and get through your PTSD. I am in a long-distance relationship with my long-time boyfriend who has ptsd from watching one of his best friends get killed in a car accident. The information in your blog has helped us both cope immensely. Also, as an art student, I have been working on some pieces about his and our shared experience with it and your blog has been very informative with filly in the gaps in my knowledge about ptsd.
Again, thanks and I hope everything is continuing to go well. :)

Petra Karenza said...

I recently discovered this blog and wanted to thank you. It's helping me to see the possibility of integrating the fact of PTSD into the normal world, rather than the two always being mutually exclusive. I wonder if that makes sense? I need to find a way of living in a new world that allows the two, because it feels like the PTSD is my child self and the normal world is my adult self... When I am in one of them, the other has gone. I also spent over three years trying to get better through AA and NLP, and took myself to the brink of suicide in the process. The posts here about AA fit my experience exactly. I left last summer and believed I was going to die as a result, but had to take that risk to try and get my integrity back. Since then the world is at least little bit less extreme and black and white. At the moment I'm trying to learn how to separate trauma from myself, and to make decisions based on reality rather than the past... This currently seems like an impossible task because as soon as I'm in a flashback I forget even the word 'flashback' because it's wall to wall. I had thought the trauma was all about abandonment, but have recently realised that intimacy is just as powerful a trigger. I'm at a crossroads: try to live alone or move in with a friend and her daughter. When I commit to one direction it triggers that side of the trauma, and when I panic and commit to the other, it triggers the other side. I am terrified of making the wrong decision, as if my life depends on the right one. When I'm in relationship I lose any sense of an outside, go into extreme flight response, can't see an escape and then go into the endless terror and powerlessness of the freeze response. I return to the child I was: unbearable shame, avoidance, and hypervigilance about making a single mistake, as if my life is in danger by virtue of existing. When I'm alone I avoid this, but go into the terror of dissolving, like I literally do not exist without someone to reflect me. One way is like being buried alive and the other is like being ejected from a rocket into space, alone, without anything there. I'd like to choose the option of living with my friend and accepting love, but I'm scared I won't survive it. I have to decide this in the next week or so, so if this site is still in use I may update my progress if possible. I've just started Somatic Experiencing so I'm hoping that will help. But I'm also looking for places I can chat to other people who understand, because I think the relationship with a therapist also sends me into my authority figure fears and will take time... Thanks for providing a place I could write this.