Last week I shared that my pdoc has on my file that I have schizoaffective disorder. It was a surprise to me and I haven’t talked with him about it because he’s out sick. It was the doctor on call who mentioned it. After this news, I discussed it with my therapist, who was equally surprised by this diagnosis. I decided to do a little research. Based on what I learned, I am fully confident I do not have schizoaffective disorder and will need to ask him about it. While I was researching, I read some things that made me to wonder if I really have bipolar. Yep, I have gone to that dangerous place called self-diagnosis. I am questioning my bipolar diagnosis.
Lots of Questions
Why have I self-diagnosed? Well, things just weren’t adding up. I’ve mentioned it before that I have only been told that I have bipolar disorder, yet I’ve never been told whether I have BP I or BP II. My pdoc told me it’s not important since the meds are working. At first I agreed with him, but when I thought about it later, that answer wasn’t enough for me, so I drilled deeper into my research. I read quite a few articles that compared the differences between schizoaffective and bipolar, and based on what I read is why I’m questioning things.
I found a handy article on the Bipolar Village website that simply breaks down the two. The first paragraph of the site does warn,
Please do not use the following article for self-diagnosis or the diagnosis of others. We cannot diagnose ourselves. It is intended instead for information and to provide useful subject matter to discuss with a psychiatrist or therapist.
Don’t worry, I’m well aware that I cannot diagnose myself. I’m simply trying to understand my current diagnosis and have questions to ask my pdoc when I see him next month.
Do I have Bipolar I
I feel confident that I do not have schizoaffective disorder, so lets get to bipolar I. At one time I was certain I had Bipolar I because I had hallucinations. Hallucinations is one of the symptoms that a BP I patient may have, but not a BP II patient. Let’s talk about the donkey. He used to show up regularly. I found it funny and fun that he kept showing up in my living room. Since hallucinations are a possible symptom for those who have BP I, I was fully confident that I must be BP I. However, I had a discussion with my husband Maurice, and he said the hallucinations didn’t start until after I was on medication. Apparently it was a negative reaction to one of the drugs I was trying. Friends of ours confirmed this for me as well. Okay, so no hallucinations. (I do wish the donkey would come back though.) I can’t rule out bipolar I altogether, because hallucinations are not something that BP I definitely have, it’s just a possible symptom.
A more clear distinction between BP I and BP II is hospitalization. Bipolar I patients typically wind up hospitalized at some point because of severe manic episodes – bipolar II patients do not. It’s not uncommon for a Bipolar II patient to be hospitalized, but it’s for depression, not mania, and is usually linked with suicidal tendencies. I have been taken to the emergency room three times due to depression, but never for mania.
There are other symptoms that distinguish bipolar I and bipolar II, but that seems to be the biggy. Based on that alone, I feel fairly confident saying that I do not have bipolar I.
Do I have Bipolar II
So, do I think I have bipolar II? The National Institute of Mental Health defines BP II as,
a pattern of depressive episodes and hypomanic episodes, but not the full-blown manic episodes
It’s pretty clear that I don’t experience full mania, but what about hypomania? For that I looked a little deeper and checked the Harvard Medical School website to see what they have to say:
The formal DSM-IV diagnostic criteria for hypomania require at least three of the following symptoms for at least four days: inflated self-esteem or grandiosity; decreased need for sleep; increased talkativeness; racing thoughts or ideas; marked distractibility; agitation or increased activity; excessive participation in activities that are pleasurable but invite personal or fiscal harm (shopping sprees, sexual indiscretions, impulsive business investments, and the like).
Let me do a checklist here:
Inflated self-esteem or grandiosity – I don’t think so. Others may disagree with my assessment
Decreased need for sleep – Check
Increased talkativeness – Check
Racing Thoughts or ideas – That’s for sure
Marked distractibility – Squirrel!
Agitation or increased activity – Yep
Excessive participation in activities that are pleasurable but invite personal of fiscal harm – Oh yeah
Do I Have It?
What was the criteria? I believe it was three of the symptoms. I just scored six. Based on my depressive episodes and the hypomania, I think it’s safe to say, at the very least, that I do have bipolar disorder and more specifically, Bipolar II.
What does all this mean to me? Does it mean I’ll stop or start taking certain meds? Hell no. Does it mean I’m going to stop taking my meds altogether? Hell no. Does it mean I’m going to tell my pdoc that he doesn’t know what he’s talking about? Hell no. What it means is I have enough info to talk intelligently to my pdoc and see if he’ll help me to get a fuller understanding. It’s been around ten years since I was first diagnosed, it’s about time I take ownership of my mental health.
Welcome to bipolar 2! That’s what I have, with a side order of anxiety disorder. Fun-fun-fun (till Daddy takes the T-bird away).
I always thought I was bipolar II, but was confused about the donkey (and the dog and cat too.) My memory is so blurry from that time. Thank you for welcoming me to the club.
I believe the anxiety is what I have too. It seems to be what holds me bac. It’s hard to function when you’re regularly having panic attacks.
I commend you for researching so well and for connecting the dots! I’m proud of you for taking ownership of your mental health!
Thank you. I never would have guessed I wasn’t taking ownership until I started my little research.
I’m about as clearly Bipolar II as they come, but I still have the occasional hallucination. Like, super mild shit like hearing things that aren’t there for a few seconds every one in a grand while, but never anything visual. Heck, never got much in the way of visual on LSD either. Hrmph. (not that I actually want to deal with visual hallucinations, but it amuses me to be mock grumpy about it at this exact second).
I have slight hallucinations also, but nothing like my animal friends who used to stop by. Always good to hear from you, Raeyn
I think there is a sort of comfort that comes along with knowing exactly what is wrong. It certainly makes the goal of getting things under control more attainable. If you don’t like how your doc answers you when asking him about his diagnosis, just know it IS ok to find a new doc. Albeit a pain in the ass, it is OK. We have to remember that the doctor is supposed to be there FOR US, we are not there for THEM.
Putting a name on it does make a big difference, which is something he doesn’t seem to understand. It’s not so easy for me to change doctors. He is head of the department of the country med facility where I go. Besides, I like him otherwise. I just need his help in possibly changing my meds which are keeping me too low. Maurice said that if the pdoc still refuses on my next visit, that he’ll come with me to the appointment after that. The doc seems to listen to him more than me.
That would be good to have Maurice there. I understand how difficult it can be to change doctors.
My official diagnosis is Bipolar Disorder NOS, which replaced Anxiety Disorder NOS. But I wonder what the real diagnosis is sometimes since I didn’t get stable until they put me on two a-typical antipsychotics. I don’t ask too many questions however, since the current cocktail seems to be working. But I too have given second thoughts to my diagnosis primarily because of the hallucinations. They’re usually just shadowy things that lurk in the corner of my vision. I have been told that this can be a product of childhood trauma, so aside from that I am pretty textbook with my Bipolar symptoms. But good on you for researching what you’re experiencing. It sometimes helps to put things in perspective, along with opening up dialog with your dr and therapist.
Most of the times when I was hallucinating, they appeared out of the corner of my eye also. Especially the cat and the dog. They’d vanish as soon as I turned to look at them. This would usually happen with the donkey too, but occasionally he’d stay for awhile.
Not so sure about the diagnostic criteria you quoted. BP 1 does not necessarily involve hallucinations, though schizoaffective disorder does. I agree with the pdoc that it doesn’t matter whether you’re diagnosed BP1 or BP2. Mental illnesses are almost all on some sort of spectrum. There is more we do not know about the brain than we know.
I see I was mistaken by writing that it was a clear sign of BP, rather than a possible symptom. My bad. I’ll see if I can clear it up. Good catch, Kitt.
My pdoc would agree with you that mental illnesses do fall under a spectrum, which is why he thinks it’s so funny that I want to know specifically what I have. My frustration, and Maurice’s, and my therapist all believe I am kept too low. When I try to talk to him about letting up a little, he refers to an episode I had 3 or more years ago where I walked in to his office and told him how great I was feeling. I was very animated. As I responded to someone earlier, my pdoc usually won’t listen to me regarding meds, but will listen to Maurice, so I’ll have to take him a long if my doc won’t listen to me.
Good idea. Our partners are good guideposts as they observe us on a daily basis.
I think I’ve cleared it up, Kitt. Let me know if you have any more concerns.
I was once given a surprise diagnosis of schizoaffective disorder, too. My current diagnosis is unspecified Bipolar.
Good to see I’m not alone. Did your doctor change the diagnosis?
Once I saw another doctor, they did.
My original diagnosis (in 2009) was bipolar Not Otherwise Specified. I was cycling several times a week and sometimes several times a day. I didn’t fit neatly into any of the DSM IV criteria. About 1 1/2 years ago my Pdoc told me that he thinks I’m more of a bipolar II. It hasn’t changed anything but it’s what I suspected. It makes me feel more grounded knowing that instead of always questioning whether or not we really have a right diagnosis. I understand where you are coming from. If we are to be partners with our doctors in our getting well it helps to know with certainty what we are dealing with so we can learn enough to ask the right questions and take the appropriate actions. The doctors are there to help us but we have to do the work–we need to know what we are dealing with. I’m with you on this Bradley.
Thank you, Journey. I can accept and respect if my doc tells me otherwise, but I will expect him to explain why.
Hey Bradley, I have done the self diagnosis thing too. I have been at various times in my life diagnosed as Borderline, Narcissictic, Bipolar II, and Bipolar I with psychotic tendencies. I never paid any attention to the first two since after a little research, I determined they were way off. Then came the Bipolar II diagnosis, and that rapidly became Bipolar I with Psychotic Tendencies. Now that one, I didn’t care for too well. However, after some extensive research including building a small library of my own reference books including a used DSM III, I determined that I did indeed line up pretty well with that diagnosis.
I was a frequent flyer at the hospital, however, it was most often for depression and suicidal ideation not mania. So, then I questioned the Bipolar I diagnosis. Until I learned that my medications are very strong anti-manics; that’s why I never got manic. And the Adderall they use to treat the weight gain caused by my meds and the ADHD has anti-depressant properties. No wonder I feel so “good.” They’ve got all my symptoms tamped down. After all this research, I have concluded that three psychiatrists and one psychologist are probably not wrong. I went off my meds at one point too just to prove to myself that they weren’t wrong. Guess what? I turned back into my old incredibly Bipolar self. Within 2-3 weeks, I was cycling like there was no tomorrow, and I cycle rapidly to begin with. Fully convinced, I went back on my meds,
I said all that to say this: Doing research is not self-diagnosis. It is arming yourself to do battle against a very sneaky little mood disorder called Bipolar Spectrum Disorder (that’s the new name). It is also arming yourself with knowledge that can be useful when the doctors say something odd or want to try a different medication, etc. All research can lead to is knowledge, and that is soooo helpful when dealing with the mental health folks. You cannot fight that which you know nothing about (I think SunTzu said something about that in The Art Of War; something about knowing one’s enemy better than they know themselves).
You’re right, research and educating yourself is not self diagnosis. I think I was just looking for a catchy headline and it may have backfired. I think a patients should study all they can so they aren’t completely ignorant when they talk with their pdoc. But, some go overboard and diagnosis themselves for a million disorders. My former pdoc said that when they cover the different disorders in med school, suddenly half the class thinks they have it. LOL
Thanks for stopping by. Hope you’ll keep coming back
It’s good to be informed! I think you should talk to you Doc and ask him why he would assign you schizoaffective.
I know with me I started as BP II and with age have progressed to BP I. Things change with age.
I will see him next month and will definitely be asking.
It sounds like you’ve really done your research. Sometimes I think its good to question things. Doctors arent always correct. XX
I agree, many
Hi Bradley! Be sure to check out my new post…you might recognize the blogger I mysteriously refer to towards the end! 😉
It is Dyane! Not anonymous!
Thank you for the plug, Dyan. I’m going to look it over this weekend and likely sign up. Together we can do this!
“Taking ownership of your mental health” – I love that. As human beings we’re curious. As bipolars we’re intelligent. I see self-diagnosis as an intelligent curiosity to understand ourselves. Its natural to want to know why or what. I’m pleased for you that you’ve found some of the answers you’ve been looking for