Am I in a prodrome? I need help (or at least some wise words)

Dear fellows,

First, let me tell you how much I admire the resilience, the solidarity and the humor that exudes from this forum. I have discovered among you so many truly wonderful people this is the place I turn to to relieve my anguish and despair.

Second, this is not an emergency in the strict sense (I don’t want you to worry too much because of the title). I have plenty of assistance in terms of family, docs, I’m in a safe place, no intention to harm myself and/or others etc.

Still, I’m more than distressed and you are perhaps the only ones who can understand me.

Here is the problem.

I’ve always been kind of a peculiar guy but my life went on rather normally, even wonderfully at moments. At some point five months ago I suddenly endured a very intense emotional trauma and I felt completely different since then. In the short term, I could not sleep for four nights - not even a minute, four nights in a row - and was calmed only through a pill of Seroquel.

Then I resumed my life more or less normally - except for doing much less and eliminating/preventing most stress - and I could kind of manage it but things still felt changed.

Some examples from small to bigger things: objects I focus on seem to stand out from the background unusually (I noticed it when I was showering and the hand shower looked like protruding intimidatingly). I basically have no focus: I cannot shift “in” and “out” of what I’m doing, all activities feel like flat, on the same plane. I do have a hard time feeling pleasure and emotions seem to have blunted at the very moment of the shock, and barely come back since then if at all.

As you might bet, I started trying making sense of all that was happening. Initially I hope it was some PSTD. Five months later with most of these symptoms having not changed the least, and as I experience them all the time or most the time, I’m basically persuaded I’m in SZ prodrome. As far as my relatives told me, we have no familiarity (their words) BUT my cousin (the daughter to my mum’s SIBLING) did start hearing voices in high school (!!! I’ve no idea if it’s sz and cannot inquire, but imagine my relatives telling me “we don’t have it in the family” and me making this counterexample…)

Of course I’ve seen doctors and psychiatrists. Most of them shrugged it off as anxiety and hypochondria. I’m currently diagnosed as PTSD and they have mentioned anxiety, depression, even obsessive thoughts (meaning that my fear of being SZ would be an obsession…). Still, they took me somewhat seriously as I have been prescribed Seroquel, Olanzapine, and Thorazine (I haven not taken the third).

But overall they insist I’m “normal” and even my psychologist (I started weekly therapy) basically interrupts me whenever I raise the topic of SZ and says it is my defense or excuse not to discuss deeper issues (…).

I would be very happy to believe them, but cognitively I feel impaired (I was extremely high-functioning before: speak about four languages, are a professional with a Ph.D etc.) and I guess this hides the problems I do have. But I struggle making sense of simple things such as forms and organizing even daily tasks. This was not the case before the accident AT ALL.

Again I hope I’m wrong, but my impression is that it is only rational to assume I’m developing SZ. Indeed I’m reading a lot on the topic (this forum included) and the more I do the more I find correspondences. In a page of Torrey’s Surviving Schizophrenia I actually found a great many real stories of people self-diagnosing in a way similar to myself (contrary to the urban legend “if you think you have it you don’t”). Having read a lot I’m of course aware that if really have SZ I might loose insight partially or totally any time soon. Another problem is that if it is a prodrome that I’m into, it can last anything from weeks to years (honestly my impression is that it won’t take long for problems to become more apparent but I’ve never been there, so who knows).

Of course I told my family, including my in-laws and my fiancée, and quite similarly to my psychologist and psychiatrist they change the topic whenever I hint to it (my girl actually shouts and gets frustrated, like “you’re not ill, don’t act as if”). I can only understand them, better, if I said what I feel for putting them in this situation I think I would be put on self-harm watch.

I know there is probably nothing that can be done in my situation. I have plenty of APs, am 15 minutes afoot from the hospital, are with relatives at the moment.

Still any words from you would be extremely valuable, even “stop bothering us! We do REALLY have the illness” would be significant and adds up to the psychs’ and my close relatives views.

The problem is, every single second there is more than something in my mind and experience, even perception, reminding me things are not normal anymore.

Best wishes and thanks to whom will be so kind to reply,

Oishi

Welcome to the forum. Are you saying you’ve never had psychosis? As in no hallucinations and no delusions?

That’s an interesting paragraph.

These are all antipsychotics used to treat psychotic disorders. Why would they put you on those if it was just anxiety/ptsd/etc.

Hi! Welcome to the forum! I would give the preset mod welcome but my phone is acting up.

We don’t diagnose anyone in this site, but the symptoms you are describing do line up almost perfectly with PTSD symptoms.

Having your perception of objects altered is consistent with the sympathetic nervous system being stuck in an active state. It causes your vision to become much clearer right in front of you, a bit blurrier on the edges, and causes motion to stand out intensely.

Having low focus is consistent with your brain diverting energy/oxygen to muscles in case you need to fight or flee.

It can be incredibly frustrating to start out with an abnormally high baseline intelligence, and then suffer an accident. To doctors, you appear undamaged because your new level is the average baseline. I dealt with this following a head injury. It was a challenge to get insurance to cover my treatment because my new intellectual level was what they would consider fully recovered.

One thing i have seen in my time as a mod here: there are folks with PTSD symptoms who do not fully understand how debilitating PTSD can be, or how badly misrepresented it is in media. Their experience does not line up with what they think PTSD is, so they don’t believe that is their issue. Or, sometimes, they do not believe that their experience was bad enough to cause PTSD, because they are diminishing the impact it had on them (which is another symptom of PTSD).

That said, the label really doesn’t matter so much. All psych diagnoses are classified based on how the illness appears to an outside observer. The science isn’t there to determine conclusively if someone has bipolar vs schizophrenia vs borderline vs PTSD, and so on. A lot of treatment is centered around minimizing the symptoms that interfere with your life.

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You can’t really know if you’re in prodrome sz, if it was possible patients would be on meds before their first psychosis which is not the case. Although after your 1st psychosis and after being stabilized on meds I think we get a better feeling of when prodrome was. Studies say lots of prodrome sz resemble depression and sometimes both are mistakenly diagnosed.

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I will say, using antipsychotics to treat cognitive fog seems a bit like putting a cast on a stiff joint. Casts are important, and help broken bones. But they also cause increased joint stiffness, so they should only be used in cases with actual broken bones. A stiff joint is more accurately treated with physical therapy and stretches.

Similarly, antipsychotics are extremely useful at stopping psychotic symptoms. But one of the primary side effects is feeling sedated, which makes people have trouble focusing. If your main issue is your intellectual capacity, and you don’t have any psychotic symptoms, you might be dealing with the exact opposite problem and need the exact opposite treatment.

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I can’t diagnose you as that’s your doctor’s job. I would go with what he/she is telling you. It is also best to take your meds as directed - don’t skip on any or you’ll miss out on the benefit. Trust in your treatment providers.

Welcome to the community.

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I will say I think it’s incredibly irresponsible of your doctors to hand out such extreme medications like antipsychotics, and then say you don’t need them. These meds have extreme side effects. If you don’t need them, you should not take them. These could very well be why you’re experiencing a decline in cognitive function.

A lot of people on here who are on these meds suffer from the negative symptoms the meds don’t treat, and often times make worse. The negative symptoms mimic depression, and impact cognitive function.

If you aren’t experiencing the positive symptoms of sz, such as hallucinations or delusions, I’d consider talking to your Dr about dropping the meds until there is clear evidence you have the positive symptoms, or full blown psychosis. That’s what the meds treat, not negatives.

Of course, I’m not a Dr, but you’re taking medication for something you admitted you don’t have. I don’t mean to invalidate you either. It might very well be prodrome, but there’s really no telling until psychosis sets in.

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You seem to no have experienced your mind altering b4. Do you drink no alcohol and take no drugs with the exception being the antipsychotics? I came to terms with the following. My mental state and myself will not stay the same and go through natural and induced changes.

Thank you very much, really.
You have been very kind in replying so quickly, I read every single line and they are all sound advice from different angles.

Let me clarify I wasn’t looking for a diagnosis (I’ve had many :sweat_smile:) so my title is very misleading. Initially I wrote “I need help” but then that was too general and sounded like an emergency (it’s not, as I said, I’ve a wonderful backup network and am in the safest place with no intention to do anything stupid). I did not want readers to be concerned or not to understand what the topic was.

Really, I just wanted considerations and sympathy. Thanks for the welcome!

To add something:

  • my situation is very paradoxical. Exactly, they firmly ruled out sz but then gave me three different APs at times. This is because without APs, I barely sleep. I have taken Quietapine only a few times and Olanzapine for a month. Now I just stopped the latter (IN AGREEMENT AND UNDER THE SUPERVISION OF THE PSDOC). I feel so much better: back in my body, able to move and to exercise, less drowsy etc. But also more agitated and can barely sleep. Another paradox is, they all say: “you are clearly not psychotic” but if I’m a sane and rational, shouldn’t my insight into my own situation be considered seriously?

-There are obviously very good reasons why the psdoc chose PSTD as a diagnosis. I would love to be convinced by it. I know PSTD is terrible and I’ve read in a paper that in the severest cases it causes an impairment comparable to SZ. However, with PSTD there would be at least the hope that it might not be chronic. Other problems are, I feel odd sensations in my body - especially my left hand, kind of feeling like it is lighter or less present or anyway, a greater difference between my right and left side - and other things that I struggle to make fit with a PSTD or depression diagnosis. For the moment the only thing I’m taking - again in agreement and under supervision - is an antidepressant (combined for a month with Olanzapine for the anxiety, so the psdoc said), but I struggle to sleep.

  • it is true that no one can tell with certainty if I’m in prodrome or not. Again, sorry I was misleading, I’m not looking for diagnosis but the question was just to give an idea of the situation. I wanted to know from wise and experienced guys what you would do in such a situation and you already told me a lot of intelligent things.

  • no, even if do have most if not all the “negative” symptoms, and some quite severely, I do not have any positive one. No hallucination, no voice, not even the doubt, never had one. I know this is the main reason they would not discuss sz. However I see in scientific papers and in experiences of people here that some people do have only the negatives (online I read that some 15-30% of szs do not have hallucinations)

  • I feel less organized than before both in thinking and language, but as you can see (hopefully!) this is far from apparent. The weirdest feeling is a sort of “blob” of thoughts I have when I let my mind wander. I feel like my first-person experience gets mixed up with my work or things I hear on television. Sometimes I feel like a clot of thoughts in my head and I basically don’t know what I’m thinking. The only time I managed to verbalize one such thought it was “Derek’s love for the son amounts to a circumference” which I know to be nonsensical.

  • I had my fair share of alcohol and got drunk sometimes. Never any drugs. I always felt very vulnerable mentally due to being a loner and being told a was strange so many time, I did not want to expose myself to any risk.

  • It’s horrible how I feel for myself and my fiancée. I have drawn her in this nightmare, cannot refrain from doing it unless I lie about how I feel, am able to do nothing at the moment - not to work, nothing gives me pleasure, I cannot follow movies, they kinda break down in separate scenes or bites and I struggle to get the plot. I know she will eventually leave me and perhaps I’m relieved for her, but I do feel worse than miserable as I see a life that could have been wonderful being torn to pieces.

Thank you very much again, I will come to read anything you wished to share in reply attentively and will post with updates if any.

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Thanks ZmaGal, as I said below in the long reply, no positive symptoms (so far) but most if not all the negative

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Thanks everhopeful, they do use it off-label but I also find it paradoxical. As well I find concerning that without them I struggle to sleep. Benzo and antidepressants help little if at all.

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Thank you ninjastar, yes I do hope it’s PTSD even if it’s horrible as it could be not chronic, but there are some things that don’t match (I have most if not all PSTD plus something else…)

Thank you velociraptor, yes I do follow the docs’ advice even if engaging with them critically.

I know the side effects, having read about them and having experienced some horrible ones already (one dystonic reaction treated at the urgencies)… Still when I was sleepless since 4 nights, I doubt anything else would have calmed me… Olanzapine is given to me offlabel for the anxiety by a very good psichiatrist, and we agreed to stop it (only 2,5 mg for a month). Yet as the fog of the Olanzapine dissolved my worries and sensations came back in the matter of a day, here’s why I decided to post.

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Then this percentage probably suffered with delusions. Often they’re present together, but some people will experience one or the other. In order to be diagnosed with sz, you’d have to have at least one of these present for over six months. I’ve never heard of a sz who never hallucinated or had delusions, but was diagnosed based solely on negative symptoms.

Thanks Aziz, that is true. In an early-action approach (I think it’s called RAISE?) I think they would give aps to someone with my symptoms (I’ve read such stories), but in my country they also keep them for full-blown psychosis in theory. The psichiatrist decided to use them off-label as I wrote below, here’s why it was minimal dose and we discontinued as I preferred to. I’m really, really scared that I might lose insight at some point. I’m especially afraid I might make people around me suffer or put them in danger. They did not want me to stop driving, for instance, and I do it rather fine, but the constantly lowered attention worries me especially if I have them as passengers.

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Thanks fractaled, I read someone saying he has only negatives on this forum but perhaps he is not diagnosed… If I could have only the negatives it would be awesome honestly, I would pay for that. Even if I could feel like this - not very well, as you can imagine - for all my life I would call myself lucky, even if my dear ones say I’m making them live in hell and I have almost zero drive, zero pleasure, zero will. My main concern is to get worse. As I said I do not look for a diagnosis, just needed somewhere to share and this is probably the best place. Thanks again.

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thanks halozination, as I said never did drugs but had a normal experience with alcohol including getting drunk especially when younger (I’m 32).

There have been a couple over the decades I’ve been here, but they’re pretty rare.

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