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4:01am July 28, 2014

karalianne:

I want to write a quick (I hope) post about my mental health.

When I was a teenager, I believe I was dysthymic. Basically, my “normal” was mildly depressed compared to everyone else, and my “happy” wasn’t as happy as other people’s. I was never diagnosed or treated for this.

In my twenties, I became clinically depressed more than once. I was not diagnosed or treated, largely because my self-esteem was so low that I didn’t believe I deserved help. And I was suicidal. I never actually got as far as planning or attempting it, mostly because my cousin killed herself when I was 16 and that had a huge impact on me.

In my mid-twenties, I started exploring the internet more and I found out about Avoidant Personality Disorder. It seemed to fit me pretty well based on the description, but as I read the stories of people who’d been diagnosed with it I realized that it wasn’t quite right. I’m introverted and I have some social anxiety, but I’m not avoidant.

At about the same time, I got involved with usenet and the autistic people I met there (including youneedacat) were really friendly and accepting. I started to think maybe I was autistic, mostly likely Asperger’s.

And then I started reading about ADHD, and everything fell into place. I saw my life in the case studies and anecdotes. It felt like coming home when I read these things. I knew these people’s experiences, because I’d had them too.

So I started looking for a way to get assessed. And eventually I was diagnosed with severe ADHD - Combined Type. I was 28 years old when that happened. (I believe the type is incorrect; I identify much more strongly with Inattentive Type.)

Two years later, I was talking with my psychologist about my ADHD treatment and she noted that I had a flat affect so she had me fill out a depression screening questionnaire. She diagnosed me with moderate depressive disorder and asked my GP to prescribe me an antidepressant. I took it for a year and a half.

Since then, I have noticed that I seem to cycle between hypomania and depression. Usually it takes a month or two to complete the cycle, and I do have a lot of days with a “normal” mood as well. I’m pretty sure I have cyclothymia, but I don’t see the point in seeking diagnosis and treatment right now since it’s not actually interfering with my life.

I also have tinnitus, visual snow, and misophonia. None of these have been formally diagnosed. I don’t feel that they impact my life enough to require treatment, so I don’t need a formal diagnosis. There isn’t really treatment for misophonia beyond anxiety medication (to my knowledge) and I don’t think there’s much to be done about tinnitus or visual snow, either, so what’s the point anyhow?

I don’t have an anxiety disorder, but I do have anxiety attacks sometimes and I was well on my way to developing one when I was diagnosed with ADHD. Goodness knows what my mental health would be like if I hadn’t had my ADHD recognized and treated when I did.

Here’s the thing: I have all of these self-diagnosed conditions and one formally diagnosed condition, and in all cases I use the label to find information that might help me manage my symptoms and cope with whatever difficulties these disorders might throw at me.

(I lied, I have other formally diagnosed conditions. I have tendinitis in both arms and pinched nerves throughout my upper body and plantar fasciitis in my left foot. Those have all been diagnosed by either a doctor or a physiotherapist. I was also diagnosed with patellafemoral syndrome, but I don’t think I have that. I do think I have sciatica, but I haven’t been diagnosed with it. Oh, and I have astigmatism in both eyes and wear glasses.)

The point of this post is, I wouldn’t have gotten diagnosed with ADHD if I hadn’t explored the possibilities and self-diagnosed ahead of time, and I wouldn’t know how to help myself when I’m in a depressive phase or when I have an anxiety attack if I didn’t know where to look for ideas for those. Self-diagnosis is important. And I don’t hold myself up as an expert on anything but ADHD, because it’s the one I know the most about and the one I am formally diagnosed as having, but I am still able to relate to people who have these other things because of our shared experiences. If I ever feel that something has gotten too big for me to handle on my own, I will talk to my doctor about getting assessed and treated. But until then, I don’t believe it hurts anyone for me to have self-diagnosed any of these conditions.

I know this may be information you already have.  But regarding visual snow, one of my neurologists thinks it may be status migraine aura.  Meaning, that I’ve possibly had a constant migraine aura my entire life that mostly consists of visual snow and other weird visual phenomena that sometimes change around a little bit but never, ever entirely disappear.  This would also explain some highly atypical reactions I had to certain street drugs that are connected to a certain class of migraine drugs.  (Although there are other possible explanations for that, up to and including that I’m just wired in a strange way.)  I think that sounds like a real possibility, and I know one other autistic person who’s gotten that as a provisionary diagnosis for visual things that overlap with some of mine but aren’t identical.  (You know him too, but I won’t name him here for confidentiality reasons.  I have no idea how public he is about this.)

And in case you’ve never had a migraine headache in your whole life, you don’t technically have to have had one in order to have had migraines or migraine auras.  There are migraines that are the auras without the headache.  And there are migraines that are specifically ocular aspects of migraines without any headache connected to them.  

My parents get ocular migraines, which in their cases consist of visual auras combined with a feeling of unpleasantness and confusion so strong they have to pull over, if driving, and wait for it to pass before they can safely drive again.  But they’ve never had the actual headaches until very recently in old age (and that could be related to strokes or TIAs for all we know).  And you don’t even need the feeling of confusion and stuff to get an ocular migraine or a migraine aura, that’s just one possible way they can feel.

I have a strong suspicion that at least some of my visual stuff is status migraine aura.  I didn’t get the headaches to my knowledge until adolescence.  But it’s possible I had them before that, because I still remember the time period when I started being able to identify a headache, and I was sixteen.  Before that I could have had a headache and not been able to recognize it for what it was.  I still have headaches where I don’t recognize the pain as head pain or even as “real pain”.  I just start holding my head and sometimes groaning, and then I realize from that that I must be in pain, and that if I take an ibuprofen the holding my head and groaning stops.  But it’s very hard for me to connect some of the accompanying sensations to a concept of ‘pain’ or to localize them to my head, even now.  

(I have very severe issues with understanding pain.  I feel it just as much as anyone, but understanding that each type of pain falls into the category of 'pain’ despite how different they are, and localizing them to a part of my body, are very hard for me.  One time someone asked me what hurt and I said “my keyboard”.  Fortunately the person knew me well enough not to WTF at me too hard, but they did explain to me that they were sure I was in pain but they were also sure that my keyboard was not a place on my body that pain could be located.  We eventually figured out it was intestinal pain, I think.  Headaches and intestinal pain are two types of pain that can to this day really confuse me as to where they’re located and that they’re pain at all.  So as a child, I can’t say whether I had headaches, because I still vividly remember learning to recognize headaches and before that age I would have never known.  I know that I had at least ocular migraines my whole life that I can remember, though.  In retrospect.  So the status migraine aura thing is quite plausible.)

I thought you might like to know that visual snow (among other visual disturbances) can come from a constant migraine aura, according to at least my neurologist, and the doctor of someone else we both know.  'Status’ just means it’s constantly happening, like 'status migraine’ or 'status epilepticus’.  And 'migraine aura’ means that what’s constant isn’t the entire migraine attack itself, but just the visual aura without necessarily any other migraine symptoms at the time.  And it’s definitely possible to have migraines that are entirely or almost entirely visual, so it’s also possible to have constant migraine auras that are entirely visual.  Migraines run in my family but we each experience them very differently.  My parents never got headaches with theirs until recent years, my brother and I have had the headaches dating back to childhood, and I have also had the purely ocular type, and possibly this aura thing.  And obviously, unlike my brother, mine can be affected by my menstrual cycle…. and when my periods stopped, my migraines got a lot better, so I’m hoping the adrenal insufficiency treatment doesn’t bring my periods back.

So that’s why I’ve hijacked your post – to let you know that you might have a constant migraine aura if you have visual snow or other weird visual experiences.  Even if a migraine aura is constant, it can change form.  One thing that the other person we know and I have in common is one aura that looks exactly like light rainfall.  I remember getting ridiculed in high school and accused of being on drugs because I’d see rain in the air that wasn’t there.  And then I can get these visual blobs that range from see-through to opaque and they sometimes flicker.  And I can get a flickering effect that covers my entire visual field.  And my neurologist thinks all of these things and more are migraine auras that just happen to always have at least one of them happening.  I’m not sure if he’s right but it’s an interesting possibility that raises questions about many aspects of my past.  Sooooo much of this was stuff that got considered 'visual hallucination’ that was then used as justification for considering me psychotic, even though it’s… not the sort of hallucination that is caused by psychosis, and can barely be called a hallucination at all.  I mean I guess it’s seeing things that aren’t there, but generally when I think of a real visual hallucination associated with psychosis, I don’t think of what’s essentially a scotoma or anything even vaguely related to one.   I think of these things as visual “noise”, like white noise only visual.

Anyway, if any of this might apply to you, you might want to learn more about migraines.  (The stereotype of the kind of migraine that involves a headache so severe that all you can do is lie in the dark and cry, is not the only type or severity of migraine.  'Migraine’ is a term as broad as 'epilepsy’ in terms of the number and diversity of types of things that can fall under each category, and not all migraines involve headaches.  And to make matters more confusing, some people say that migraines can be a seizure trigger.)  Or you might already know about migraines because you might have them without me knowing, but still I’d be surprised if you knew much about status migraine aura, because I only know two people who’ve been even provisionally diagnosed with it, me included.  So I wanted to pass the information along in case you or anyone else could use it.