re: mental/physical healthcare

k-maps

Trying to figure out what to do in this junction of seeking of medical/mental care,,, was hoping maybe someone here had experience with similarly ambiguous and confounding symptoms met with even vaguer diagnoses,,,

Those of you who have read some of my recent threads might be aware that I've been struggling with some mysterious illness that has significantly messed with my sleep, energy, cognition, motivation, and some pain symptoms for at least more than a year. In addition, Since then I've been on a (mostly) fruitless quest to get to the root of the problem, be it situaional, physical, mental or some combination thereof.

Spoiled for long confusing medical saga.

I'm still following through with more differential diagnosis on the physical end, which showed various signs of inflammation (positive blood tests), but nothing so high or redundant yet to be conclusive, or to point to a specific disorder. On this front, I've been on several types of steroidal and non-steroidal anti-inflammatories which relieved some of my symptoms significantly for a while, but not consistently, and ultimately they became less effective. I still have some avenues to follow up regarding my sleep and inflammation, which I fully intend on doing, but I'm also growing pessimistic to find anything because so far the signals have been weak, and getting any sort of answer is starting to feel like a Sysiphean struggle (been at this for about two years+).

I've also made a lot of obvious lifestyle changes with consistent exercise, diet, and sleep (with the help of meds + supplements). At my best, the combination of meds (anti-anxiety for sleep and heavy anti-infalmmatories) + exercise changed the quality of my sleep drastically. I felt like I had deep REM sleep like I haven't had in years. And it felt like my brain was also making up for lost time, stitching 20-some dreams together in one session. At one point, I was even able to feel normal for a couple of days(!!!). But, alas, it was not sustained, and completely went to shit soon after I got a cold. The meds + lifestyle habits had to change drastically in that period, which threw everything out of whack. To the extent that I haven't been able to regain a semblance of the progress I made since I started on my meds/lifestyle regimen. But, even more disturbing, was that something so trivial as a cold can just completely destroy me at a moment's notice. There seems to be no homeostatic stability of any sort. How these variables varied over time is multidimensional and complex, but my gut feeling says something is really off when so many things have to be "just right" for me to feel normal. The relationship between the meds and the quality of sleep is also complex and not easily replicated. However, the experience of feeling "normal" for once solidified my view that there is a very clear demarcation between "normal" and "sick", and it can't just all be in my head (or it could, but in a mental illness sort of way).

In the period after I started feeling sick, I've also seen a therapist for over a year. We have a pretty good rapport, and I've obviously kept him up on all my symptoms, medical progress, and more specific mental idiosyncrasies I've been feeling. At some point in response to the things I was telling him he started throwing around a pretty scary diagnosis on me. One day he gave me a bunch of papers to read about schizophrenia, putting the idea that I was ultra-high-risk (UHR or "prodromal") for developing the illness on the table. My first reaction to that was, yeah fucking right, LOL. That's like hearing someone saying they have some non-specific symptoms and jumping to the conclusion they have cancer. Needless to say, that's a very serious disease to just throw out there, and I really didn't think it applied to me. But when I thought about it more, HE IS a PSYCH, and that is a very SERIOUS thing to just casually bring up.

A month or so after he first brought it up I had a pretty severe derealization episode. It lasted about 30 minutes, and was scary enough that I seriously considered going to the hospital. What's even weirder, it just struck me while I was having a conversation with a friend and was not particularly stressed or anything. Since then, I only experienced something approaching that episode once, but much shorter and not nearly as severe. Because schizophrenia and derealization are not directly linked (unlike delusions/hallucinations), I haven't really thought much about it. However, I was getting sick of him just throwing this pretty scary diagnosis on me. So I asked if there is a way to be more precise about it, so it doesn't seem like just a knee-jerk general appraisal of my symptoms. So he gave me a questionnaire to fill out, and sure enough, I "scored" highly on that as well. So, great, I guess I have some clustering of some symptoms that happen to align with some questionable degree of significance with some other clustering of symptoms of people that with a probability of about 40% go on to develop a very serious illness, What the fuck do I do with this information?

Look, there's clearly something wrong. I had to take time off school. My apartment is starting to look like that of a crazy person. My social life deteriorated. I keep making new friends, but nothing ever sticks. People find me amusing and invite me to things, but I never form a group of friends. I seem to alienate and weird some people out of liking me. I feel the need to provoke people, and make all social situations funny to the point of absurd. I'm fairly successful at that last part, but it doesn't really make me feel very connected to the people around me. A close friend of mine told me she found my jokes funny, but getting a bit on the weird side at the last party she invited me to. Now I think she's not talking to me anymore. I lost some very important relationships to me in the past year. Going to sleep is a bizarre adventure every time. I'm back in school, but my performance is jagged and inconsistent. One month I'll be on top of my shit, get A's on the assignments, and be able to complete all the lecturer's points. The next it's like I need to carefully monitor myself from just random shit from coming out of my mouth, and TAs are baffled by some of the stuff I turn in. Sometimes what my psych says makes perfect sense, and I go down this rabbit-hole of fatalistic symptom matching. Sometimes I feel very strongly that it's all bullshit. I'm too (haha) "well-adjusted" to be someone who's truly suffering from a major mental illness, and that cheapens the severity of those illnesses.

Anyone here with schizotypical or biploar disorder? Is prodromal diagnosis bullshit, or is there any real veracity to it? Even if I take it seriously, what am I supposed to do about it? How do I explain my employers/advisor what the fuck is going on with me if it's true? Should it change where I invest my energy in terms of further healthcare? I fluctuate from being extremely ambivalent about this, to taking it very seriously and freaking out.

ceres

Are you seeing a psychologist or a psychiatrist? A psychologist might feel confident enough in the diagnosis (or at least that there's something there that needs to be medicated) that he would refer you to a psychiatrist, and if he's a psychiatrist he may be able to prescribe you something himself.

I know someone with paranoid schizophrenia who was misdiagnosed years ago as BPD ( I have NO idea how, she was textbook-symptomatic and I remember being surprised at her diagnosis when I was in HIGH SCHOOL PSYCHOLOGY.. oh well, anyway). Her diagnosis has since been corrected, but even with the correct diagnosis medication is.. a struggle. It's constantly being adjusted, and without it she is non-functional. She has also gotten worse as she's gotten older, and I think that might not be that uncommon with schizophrenia.

This is going to sound really stupid, but have you been tested for STDs recently? Not saying that you have one, but if you haven't been tested it's something to try.

k-maps

ceres wrote: »

Are you seeing a psychologist or a psychiatrist? A psychologist might feel confident enough in the diagnosis (or at least that there's something there that needs to be medicated) that he would refer you to a psychiatrist, and if he's a psychiatrist he may be able to prescribe you something himself.

I know someone with paranoid schizophrenia who was misdiagnosed years ago as BPD ( I have NO idea how, she was textbook-symptomatic and I remember being surprised at her diagnosis when I was in HIGH SCHOOL PSYCHOLOGY.. oh well, anyway). Her diagnosis has since been corrected, but even with the correct diagnosis medication is.. a struggle. It's constantly being adjusted, and without it she is non-functional. She has also gotten worse as she's gotten older, and I think that might not be that uncommon with schizophrenia.

This is going to sound really stupid, but have you been tested for STDs recently? Not saying that you have one, but if you haven't been tested it's something to try.

Haha, thanks, it's not stupid; and yeah, I'm so far down the differential diagnosis path that STDs have been ruled out already (and unfortunately, there's no reason for me to get retested :P). A feature of my quasi-social isolation.

Let me be clear. I do not think I'm even remotely schizophrenic or bipolar. I mean, make all the jokes you want, but I've had no hallucinations, delusions, or manic episodes. What's being discussed is this idea of an insidious onset of symptoms that starts with increasingly worsening negative/cognitive deficits that eventually may or may not culminate with a severe mental illness. I'm interested in people who may have also met these clustering of symptoms, and what was their outcome. Be it, they decided it was bullshit and got better with some stress management, ended up having a brain tumor, or actually went on to have a psychotic episode.

Oh, he is a psychologist. He referred me to a psychiatrist who said I was Bipolar II, but we both agreed that was bullshit. Going to see another psychiatrist in a week or so.

Invisible

I think I've spoke to you via PM before (I also think once when I was on ambien, sorry about that).

I'm still waiting to find out a diagnosis. One doctor seems convinced of bipolar despite not having any incidence of mania (apparently irritability to replace it). I'm supposed to take another 3 hour test on Monday that is supposed to give better results. Who knows? I've had one doctor put delusions down because I said I understood a belief was irrational. I know I have anxiety and depression and dropped out of school for a year because of it and almost dropped out a second time.

I'm not sure what to tell you. Psychological issues are hard to diagnose. There are some serious ones that due start to manifest later.

ceres

@Invisible Go look up "hypomania". It replaces mania in Bipolar (type II) Disorder, which is what I have.

No one ever used that word for me in a therapy context even when I was diagnosed years ago, and I'm not sure why; I discovered it recently on my own, and when I started with my most recent therapist I used the word out of the gate and there wasn't any "well, is the irritability like this or this or this?" I just said "I have hypomanic episodes" and she was like "ah yes okay."

It makes a BPD (even type II) diagnosis make a ton more sense for me, now that I know that word, and just having that definition I feel like I can manage it better.

UncleChet

@ceres‌ Until a recent (Sept. past) med change, my normal state of being was about 2" under hypomanic, and varied by amounts of coffee. I too had never heard that term until I got with the Dr that I have now, and it is so much better.

ceres

UncleChet wrote: »

@ceres‌ Until a recent (Sept. past) med change, my normal state of being was about 2" under hypomanic, and varied by amounts of coffee. I too had never heard that term until I got with the Dr that I have now, and it is so much better.

That's pretty much how I am unmedicated, and then sometimes I just cross the line into an episode and like.. stop sleeping at all for a period of days. I'm usually pretty cranky anyway, but it's really easy to tell the difference between being an irritable person and having a hypomanic episode.

@k-maps I kind of think that maybe you should go into your therapist and tell him you want to stop hashing out hypotheticals and picking apart minutia and start trying medications. I don't know if he will be on board with that or resistant without having an exact diagnosis, but you still have symptoms you can treat and things you can try, and I can tell from talking to you that you don't want to watch your life go down the shitter while you pick out this or that exact thing that might match. It feels like you have enough to work with that a psych could make some educated guesses for meds you can try. Even if the first few don't help and you have to try a bunch of them, instead of sitting on your hands and watching this ruin you you would be taking control to try to right it, and that might help your outlook a whole lot.

You might be surprised at how the decision alone to take action can start to change the way you feel.

k-maps

ceres wrote: »

UncleChet wrote: »

@ceres‌ Until a recent (Sept. past) med change, my normal state of being was about 2" under hypomanic, and varied by amounts of coffee. I too had never heard that term until I got with the Dr that I have now, and it is so much better.

That's pretty much how I am unmedicated, and then sometimes I just cross the line into an episode and like.. stop sleeping at all for a period of days. I'm usually pretty cranky anyway, but it's really easy to tell the difference between being an irritable person and having a hypomanic episode.

@k-maps I kind of think that maybe you should go into your therapist and tell him you want to stop hashing out hypotheticals and picking apart minutia and start trying medications. I don't know if he will be on board with that or resistant without having an exact diagnosis, but you still have symptoms you can treat and things you can try, and I can tell from talking to you that you don't want to watch your life go down the shitter while you pick out this or that exact thing that might match. It feels like you have enough to work with that a psych could make some educated guesses for meds you can try. Even if the first few don't help and you have to try a bunch of them, instead of sitting on your hands and watching this ruin you you would be taking control to try to right it, and that might help your outlook a whole lot.

You might be surprised at how the decision alone to take action can start to change the way you feel.

Yeah, you're right. I haven't tried out many different things mostly because *I* have been resistant. I believed I could pull myself by the bootstraps with a heroic diet/exercise/sleep regimen. When that fell on its face, I started introducing some meds into the mix. I've gained a lot of traction with a low-dose course of prednisone and anti-anxiety pills, subscribing to the theory that psychiatric conditions can be mediated by the complex interaction of auto-immunological inflammatory processes and sleep a lot of the time. After a week or so of aggressively treating inflammation, getting better sleep, and some healthy lifestyle heuristics, I managed to feel normal...justifying, I felt, my belief that the core problem is immunological and sleep-related (I have many other reasons to believe this as I also developed alcohol intolerance and have adverse reaction to vaccines and even worse adverse reactions to the actual cold/flu [I am NOT an anti-vaxxer!]). Since a mere cold was enough to topple the stronghold of health fortitude I constructed, I think I'm ready now to try something else.

Spoiled for somewhat tangential philosophical point.

This touches on the larger confusing physiological vs. psychiatric debate, and the way I feel psychiatry has been slowly and insidiously "de-medicalized". I see why that statement may be jarring at first, since there is such a strong pharmacological push to overdiagnose and overtreat psychiatric conditions. But, what I mean is that psychiatrists will rarely try to really tease out any underlying medical issues. If I talk to a psych about inflammation they'll tell me that they don't know anything about that. If I talk to an GP/MD about derealization, they'll tell me it's a psychiatric issue --- WUT??? We collectively buy into this neo-Dualism that our brains/mind are on this metaphysical pedestal separate from our bodies, immune system, digestive system...yet, they evolved naturally with these more basic functions. The body doesn't have clean hermetic layers of abstraction between the mind and the rest of our biology. As such, many times, depression, anxiety, mania, are not primary conditions, but are like fevers indicating something is wrong in the body, be it developmental, degenerative, or entirely borne out of some external insult from the environment.