Re-evaluating and welcome input (very long with possible triggers)

I’ve been following the thread about treatment resistant folks and some of the posts in it really got me thinking. I think it might be time to really re-evaluate my treatment. I want to post a some of my background, what I’ve done for treatment and I’d love to hear any feedback you might have. This is long-- almost a life story and it may trigger some.

My current diagnoses is BP2 with GAD.

It’s time for change. And change is ahead. I’ve had my current pdoc since moving to my current location in Dec. Before that I had another one for a few years.

I’ve had issues since I was a small child. The first time I tried to kill myself I was 5. I had no idea how, and it was ridiculous, but the intent was there as well as the effort. My teen years were hell with lots of mutilation, drug abuse, terrible relationships, suicidal ideation and so on. When I drank I’d freak out and become violent and/or suicidal, so I tried to stick mainly to drugs.

In my late teens I went through a phase of cutting that I thought was suicide at the time, but looking back most of it was self mutilation. Not all of it though.

In my early 20’s I had a toddler and a baby. I went to re-hab, joined 12 step programs and became a recovery NAZI. I drank herbal tea and lived a clean life. I thought I was “better.”

While visiting family in another province, I met someone. When I went home we exchanged letters and developed a phone and letter romance. I went to visit him, decided on impulse to get married, went home and packed up and moved my two small children all the way across the country and through three time zones to be with him. I’m BP2 but I’ve wondered over the years if this period of time could have been mania. But I’ve never heard voices or anything like that, and I can't remember enough to know if I was very delusional. But I certainly behaved as though I was. I know the people back home who knew me were begging me not to do something so rash, but there was no way I was going to listen to them.

He was a horrible person. Absolutely nasty. The kind of guy who practised psychological abuse like it was a fine art. I ended up in the hospital maybe four times or so in the 5 months I was with him. Ended up in ICU after OD’ing and then a friend flew out to stay with me and bring me home.

Once there I was on a mission to destroy myself and my life got even messier. Promiscuous, drugs etc. I ended up hitting bottom and I went to a residential treatment facility for 5 months. It was absolute hell. There were 5 or more intensive sessions of therapy per week, plus a few that were more like group and conflict management. The whole place was trigger after trigger and they wanted it that way. If they saw a trigger they dug right in. The program has since changed as it was dangerous the way they ran it. I survived it and it made me stronger.

So I went from rocky teens, to wonderful early 20’s where I thought I was better, then went up, up, up and married a monster on a whim, plunged down to a very dark and dangerous place and that lasted for months.

After the residential treatment, I was doing a little better, started university as a mature student and thought my life was on track. I was better now. I’d done the treatment and now was better.

A couple years later I had met my husband and we were living together. Everything was stable. I was happy, and my life was great. But I couldn’t leave the house I was so depressed and the thought of seeing anyone made me panic. He would coax me out to the all night store in the middle of night just to get me out of the house even if it had to be under cover of darkness.

I went to see my doc and she finally acknowledged that I had a problem. It was because there was no turmoil at that point and she could see that it was physical. She put me on an anti-depressant (Luvox and then later switched to Effexor) and a couple of years later I happened to be talking about how I was cleaning and organizing my house and she started to question me about hypo. She was only a GP but the town I was in was under serviced and pdocs were in very short supply, even for people with serious psychosis. She diagnosed me as bipolar and added a mood stabilizer (Valproic Acid).

I immediately gained 30 lbs and stayed on those meds for years, but I still cycled.

All along I have also had these weird episodes. As I was going up or down, I would often have a crisis. I would panic, melt down, lash out and destroy things (often walls). I would also punch myself in the head, feel extremely violent (with myself or things only). I would hate myself, feel panic at the world, completely overwhelmed and become convinced that I HAD to die. My hubby has had to restrain me at these times. These episodes would happen in a major way once or twice a year, with multiple milder versions (throwing phones, glasses, yelling) in between.

So I was on these meds, still cycling and still having these episodes.

Then I got very sick from the meds (Valproic Acid and Effexor) and had to be taken off. My GI specialist told me not to take any psychiatric meds. My Dad had just died, then my beloved dog unexpectedly and I slipped into a depression that was the most severe one I’ve ever had.

I was almost catatonic. I could only sit and stare. I couldn’t concentrate enough to read, or watch TV or play video games which were my usual coping strategies for depression. I literally sat and stared for hours and hours on end for months, barely able to speak. I was locked in my head with a suicide fantasy playing over and over in a loop that wouldn’t stop. At first I recognized it as suicidal ideation and dismissed it, but it persisted and I began to notice it more and pay attention. It started to crystalize into a plan and I was afraid. I told my hubby. Ironically, while I’ve been suicidal at various points, I really don’t want to die.

There was some talk of me being hospitalized (this smug little prick of an intake worker even insinuated that it might be done against my will) but it was a small town and my hubby is a cop so I didn’t feel like that was an option, and my hubby felt like a contract would be enough. I had been told that I couldn’t get a pdoc because the waiting lists were too long but one was obtained and I started going.

I disliked him and I think he was sexist and I was never comfortable with him, but he put me on meds. Seroquel and Lamotrigine were starting to be used as treatments for bipolar and he had just read about that combo in a psychiatry magazine. They seemed to work for the most part.

I still cycled, and I still had my episodes (we replace a lot of phones and I’ve attained some skill in patching drywall), but I didn’t sink as low as I’d been, so I felt that he’d saved my life. I was still debilitated for some months of the year, but I had my hypo states to catch up on what I’d missed, and compared to what I’d been like, I felt like I was functioning okay. Each time I had a melt down I felt like killing myself for a few days, but then I’d usually swing up after the initial crash down and each time I thought it was a one-off. I didn’t recognize these episodes as being part of a pattern. I saw them as events caused by external factors.

When I moved and got another pdoc I told him that I was doing fine. I was cycling between hypomania and severe depression, but as the depression was not the nightmare I previously experienced, I dismissed it as part of my cycle and as normal. I accepted it.

My depressions would last for weeks (5 or 6 maybe) but not months and I wasn’t always rock bottom. I might isolate in my house, but I could get out of bed and leave my bedroom. I would play video games, watch TV and hide as a means of coping. When it got too deep, I would lie in bed and stare, but I wasn’t like that for months on end and I could endure it.

I thought this was as good as it would get and I was content with it. I had my coping strategies. I could do whatever I do when I felt good. When I was starting to get depressed I would "put on my seatbelt" and settle in. I would do things to pass the time until I felt better and then when I'd swing up, I'd cook and clean, write, draw or take pictures. Call all the people I'd been avoiding and tell them I was back.

My pdoc told me he didn’t think I had very good quality of life. He wanted to treat my hypo and said it could make my depression go away. He put me on Lithium.

Looking back over the past two years I can see that my life has changed. I no longer cycle much. I am depressed much more often and there is hardly any hypo to relieve it. I stay depressed for longer periods. It's as though now that I don't have the hypo to pull me out, I stay locked in the depression for the time I would have been up. I have been depressed for probably 10 months out of the year since I’ve been on it.

I have blamed it for taking away any passion I have but I don't know if I only feel that way now because I’m depressed. I know I've felt that way, then changed my mind when I've felt okay. What I do know is that I haven’t been creative or felt joy or passion since I’ve been on it. I have also been depressed so much more. But....I also noticed that my outburst episodes had disappeared along with the hypomania as well, and thought that since the lithium was treating them it was okay after all.

Until a month and a half ago when I had a doozy. I destroyed a wall, broke an iphone and a laptop and my hubby had to restrain me. I felt like going to the hospital. I have Zyprexa as a PRN for these episodes but while I took it as soon as I felt myself start to escalate, it didn’t kick in fast enough. After it hit me I slept for a day and wanted to die. It makes me soooooo depressed when I take it.

My current doc put me on Welbutrin after that. I was having a hard time at first with side effects as I’m very sensitive to drugs. I was determined to ride it out and give them a fair try so I did but at my last visit he asked and I told him I didn’t feel any less depressed. So he suggested ECT. I’ve been on meds for 19 years and they aren’t working :-(

In preparation for my ECT he is taking me off of Lamotrigine and he will be taking me off of Lithium as well. I’ve been having some trouble coming off the Lamotrigine, but the last day or two has been better.

I was really intrigued by a few posts from a couple of people who use meds only when they need it and not all the time. Since I cycle anyway, I’m wondering if I should look at that.

If I understood my pdoc correctly, it sounded like I might be able to go all the way off some (if not all meds).

I’m excited about the ECT and I really hope it works. Whether it does or doesn’t, I really feel like I need to look at what I’m doing.

My questions:

When I married that guy, would that have been hypomania or could it have been mania? Would a person do something that extreme while hypo? If it was mania, is it possible to have mania but not hear voices, or have any noticeable psychoses?

Could my outbursts be mixed episodes? They usually take place in the company of a lot of anxiety and depression. I feel crappy, and then agitated and that becomes a sort of panicky rage. I will say whatever I'm thinking at this point no matter to whom and no matter what. I would not trust myself in public like this. What I say is always the truth (or how I feel at the time), but it cuts and my delivery is usually scathing and brutal. I don't feel in control of myself.

I lifted this from a journal entry I did: The most frightening type of suicidal episode for me has been there from the beginning and remains with me still in some form or another. It is frightening because unlike the deliberative and self-indulgent episodes I describe above, I do not feel in control when this takes place. When this takes over, my emotional state escalates to a level where I feel very little control, and when thoughts of shame, guilt and self hatred are present, I feel a compulsion to act instantly and violently and I shake and cry silently and frozen with the effort to stay still and wait long enough to get a fast acting medication which has saved me (and my loved ones) a lot of grief. In these episodes I feel like I could murder myself quickly, decisively and it a fit of rage.

Finally...any suggestions?

I was going to apologize for this being so long, but I warned about at that up front, so I assume anyone who got to this point chose to do so because they were interested. Since that is you, thank you for reading :-)

I'm so sorry for all you have been through. Aside from the self mutilation, our stories have MANY eerie similarities.

I can answer a few questions for you. Bipolar mania does not always involve delusions.

Yes, you could have been hypomanic, or very possibly full blown manic when you got married. No way to know for sure. Do you usually make decisions like that so quickly? Probably not. Was it "Out of character" for you to make such a quick decision? Some people probably make decisions like that while only Hypo. For me, that would be a full blown manic thing to do.

I am also thinking about doing the med thing, only while in a episode. I don't know how this will work long term, as I just decided to try it and I still need to discuss it with my doctor.

Yes, the anger you describe sounds like it could be a mixed episode.

I have no experience with ECT and therefore cannot offer advise or wisdom unfortunately. I'm sorry. Some people here do have experience with it, and hopefully they will be by to offer thoughts on that part.

Thank you for sharing your story.

I wish I could be more helpful.

Let me preface this by saying I am unmedicated, but smoke pot daily sometimes and sometimes not at all. I have gotten anger like you describe and self-harm a couple times a year. Mostly I just have longstanding depression. Recently, I had my first manic (not hypomanic) episode. I have discovered that kratom helps lift me out of a depressive funk, but it may also exacerbate mania.
I don't know what kind of meds can be given for while you are in episode. That is what I have always wanted, something to kick the high down a notch when I can't concentrate and something to snap me out of the lows. It would be great if I could get prescription opiates because they sure do make me feel better when I am down. The anxiety meds seem to cool the ups for me a bit. Anyway, I was under the impression that drs. won't handle bp in this manner, which is why I rely on self-medication. I'd love to know if you find differently. I am really not interested in getting fat or dealing with other side effects of daily meds.

Hi,

Thanks for sharing. How does you recovery from addiction look these days? For me, an addict w Bipolar 2 and GAD, my addiction and recovery are so much more important than anything else. So much of my life is shaped by my addict brain, even several years into rock solid recovery and sobriety.

Instead of wondering about behavior and patterns as they relate to bipolar states, I look to what I might have been drinking and using at the time.

I hope you find relief.

moogs

Thank you Elsa, you've been a great help.

As for that episode being mania or hypo, I can be impulsive, but not on such a massive level. The only reason I think it might matter is that if it was mania I might be a little more wary of any hypomanic episodes. I had asked my old doc once why I needed lithium, and why I just couldn't be hypo. It did no harm, I got a lot done and I felt great. Sometimes it would get to be too much, but for the most part I was able to re-enter my life after a debilitating depression.

He told me that hypomania can slip into mania and that it's too dangerous to allow hypomania.

@zepchic: If pot works for you that's great. Would it not also work for you when you have your blow-outs? I run and take a sublingual Zyprexa but I'm sure that pot would do much the same thing if you were able to take it early enough... I hope you find something that works well for you.

@Moogieotter: I've done a lot of thinking about this over the years, and a lot of soul searching around this. I don't believe I ever had a problem with addiction. I believe that my BP was overlooked when I was younger and I was "misdiagnosed" and sent into rehab. All of my problems in the mess that was my life were from it. My drug use was for two reasons.

The first was that I was very much a follower. If the people I was around did drugs, I would too. And I would do the drugs they liked, even if I hated them and they made me feel like crap. I gravitated to people who were unhealthy and "dangerous." The second reason was that I'd do drugs while in an episode (either up and wanting danger, or down and wanting death) with the intent to destroy myself. They were more of a Russian Roulette sort of thing than me getting high or enjoying it.

It's been 20 years since any of this and I often forget that was me. It seems a life time ago and it feels like it all happened to a different person. As for drugs.... I have absolutely no desire to use them. None at all. Never. I can have them in the house and I don't care.

I was however, starting to get a little concerned with alcohol. After not drinking for many years I started drinking small amounts. Over time, that increased to a point where I just looked at it one day and thought, this is becoming a problem. Other "normal" people around me were drinking the same amount, but I just had alarm bells and decided that it wasn't worth the risk. So I quit. Just like that and haven't looked back. It wasn't difficult and I don't miss it. What I do miss is feeling like I belong when I'm around people who are drinking socially.

Because of the alcoholism in my family, I know I'm at risk, and I didn't want to take any chances. The main reason I'd wanted to drink was to be social, and to be like everyone else. To be a normal person. But I'm not.

I'm still in touch with a few people from the programs and I've thought about going back, mainly because I miss the companionship and the spirituality. But I don't relate to the addiction, and I don't feel like I belong. That is why I came here instead. Here, I relate to people and I finally feel like I've found a place where I belong.

>Instead of wondering about behavior and patterns as they relate to bipolar states, I look to what I might have been drinking and using at the time.

For the vast majority of the past 20 years, my BP has had no competition for the spotlight. It stands on it's own, running my life with no help from any substances. When I look back, what I've been drinking and using at the time is.... Nothing. For me, it's critical that I DO look at my behaviour and patterns as they relate to bipolar states since that is the absolute crux of the problem.

Lisa

I relate to your last sentence. every word.

Best of luck to you.

[COLOR="Blue"]"I don't believe I ever had a problem with addiction." That was me, Lisa. I drank enough alcohol to float the Queen Mary, and snorted enough white powder to sink it. When I crashed in 2011 after being mis-diagnosed for 30yrs, I received the correct diagnosis and med combo (Lamotrigine 150mg & Lithium 600mg) I'm still taking, and all the substance abuse issues just kind of dissolved into the blue. All through the decades I thought the drinking/drugging/hypersexuality/spending/**** decisions were the problem...but they were only a symptom.

I had other symptoms too: I was a Union crane operator, and if some superintendent would look at me more than 5 seconds I told him to go get my money...literally over a dozen times in the early 80's. One year I bought 7 brand spanking new cars. The sexual revolution still had legs, and times were grand in that respect. In conversation with other 60somethings I'm asked what my favorite drug was back in the day. I don't even hesitate...it would be the birth control pill. When the substance abuse started to wane, I uncovered the terrible truth that spending was the worst of all my addictions by a country mile.

I knew something was up. I knew it since I was 13, but didn't know what to do with it. At 26 I went to rehab. At 29 reached out for help in the form of therapy. During those years, I learned to shy away from telling psychs and therapists the whole truth. Once you were framed as a substance abuser, the therapy took a hard left and got away from the root cause: bipolar. But all has been stable around here since 2011. Sure, my creativity has taken a hit...but the alternative of going off meds is NOT an option. I spent mid 6 figures of my inheritance in two years before I crashed. I guarantee unmedicated I could spend the rest of what we've got before Thanksgiving.

Your husband sounds awesome! Good Luck, Lisa!

/COLOR]

Thanks Chickenkicker :-) My hubby is awesome, and I don't know what I'd do without him. Probably be a lot less stable, that's for sure.

I'm glad you found the right meds and things are better but I'm very sorry about your creativity. I understand having to choose the lesser of two evils though...