Discussions By Condition: I cannot get a diagnosis.

Help me. Please.

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • July 16, 2011
  • 08:09 PM

I wrote on here months ago and didn't really get an answer, but now I am so desperate I don't know what to do. I cannot work. I cannot take care of myself.

A lot of it revolves around mental health issues that have no definitive diagnosis. I've been in the system since I was 17? I'm nearing 24 and nobody has any idea what is going on with me.

I also deal with narcolepsy, that started randomly when I was 21, quickly and seems to come and go, the cataplexy that is. The excessive sleepiness NEVER leaves. I cannot be treated for it, because every medication from concerta all the way up to xyrem causes serious mental health episodes.

Most of it goes around my periods. I know that sounds odd. But I didn't get my period for 8 months. I went to an endocrinologist because I am diagnosed with PCOS, and she put me on metformin. I got one. But I haven't got one since. This is usually what happens with my periods. With this one and the ones previous to the eight months. The week before I am moody typically, pretty much like any female. The week of I am the happiest person you will ever meet. And the week after. Is not good. Not at all. My most recent period, the week after I was labeled psychotic. I was paranoid, delusional, but had no hallucinations. I was put in the hospital. Where I had a doctor who was VERY willing to help me, but she was very undereducated. In general. And of course I didn't want to stay. Who does? This has happened before, but not this bad.

In general physically I deal with constant headaches, hot flashes, confusion that comes and goes, pure exhaustion, memory loss, a disconnected feeling, spacey I guess is the word. A large history of Serotonin syndrome, (3,4 times. One of the times it wasn't definitive). Slightly low androgen levels. But nothing out of control. I have no other symptoms of PCOS, minus the missed periods. I also, more so recently have lost a lot of my hair. And the cataplexy that seems to come and go without medication change. Weight gain, (like serious weight gain) it seems I've topped out at 230, and won't go any higher, but I graduated high school at 110 pounds and I swear on anything that I am one of the healthiest eaters I know. recent high blood pressure.

Mentally I deal with, startling easily, paranoia, delusions, (that both have since receded and seem to come and go randomly), hallucinations that I seem to understand are not real, (like music for example), although me and my doctor argue over whether voices in my head are hallucinations or just prominent thoughts. He says they're hallucinations. To be fair, since starting tegretol, they have ceased a lot. Severe depression that have lead to a few suicide attempts, occasional mania or mixed episodes. I can probably count on one hand how many times I've been through one though and they were always in response to extreme changes in my Effexor. Never experienced them prior. Dissociation or depersonalizing. Constant suicidal thoughts that never get better. Inability to concentrate for long periods of time. (I haven't watched TV in 3 years, because I can't stay there.) Severe anxiety that never ceases.

My current psychiatric diagnosis is PTSD. Although if I do have it, it's probably more so due to the fact that I have been restrained numerous amounts of times years ago in psychiatric wards and it's the contributing factor to it. Otherwise I have no diagnosis, except for major depressive disorder, it was a diagnosis given to me in the very first years of my illness and in any case I've been in a Major depressive episode for 7 years... is that even possible? I was told they lasted six months at max.


I've been in 15+ psychiatric wards. I've been in a ton of medical hospitals as well for things like CDiff, MRSA, Neurological issues, times I've hit my head from the cataplexy, etc. It's been awhile though. I've gone through years of serious therapy, and nothing works.

I've asked doctors to provide me with some information but I've gotten the "it's the narcolepsy excuse". And the "well all mental illnesses have physical causes". But nobody seems to really be helping me. I worry mostly about pushing a lot, because they will consider it "just another delusion". But this has been going on since long before I became delusional. Although I do have PTSD, my mental health diagnosis is completely up in the air at this point, otherwise.

These are all the meds I've been on, at least this many since I started with the mental health system and most of them do a poor job, if anything at all.

Prozac (did nothing)
Zoloft (did nothing)
Effexor (2) (on it too long, stopped working, can't get off, have terrible withdrawal symptoms)
Wellbutrin (nothing)
Ritalin (worked fine up to 20mg, but clunked out)
Provigil (increased paranoia)
Nuvigil (increased paranoia).
Concerta (2) (increased paranoia 2nd time. First psychiatric drug.)
Abilify (2) (did nothing)
Xanax (fine in very small amounts)
buspar (is like a sugar pill)
Klonopin (multiple times) (sedates me)
Valium (reduces anxiety in very small amounts)
Lexapro (never worked)
Lovux (for only 6 days, no side effects noticed)
Ativan (multiple times) (sedates me)
Risperdal (2) (weight gain)
Tegretol (on currently, makes me aggressive, like haldol, but not nearly as bad)
Lamictal (weight gain)
Lithium (3) (stopped working, was good though)
Seroquel (2)(sedates me)
Topamax (2) (stopped working)
Geodon (did nothing)
Celexa (did nothing)
Cymbalta (did nothing)
Remeron (sedated me)
Paxil ( I don't remember, it all blends together).
Ambien (made me confused and never put me to sleep)
Sodium Oxibate (seriously increased paranoia, but did put me to sleep)
Trazodone (sedated me)
Visteril (sedates me, but doesn't help anxiety)
Haldol (sedates me, makes me aggressive)
Thorazine (seriously sedates me, gave me the shakes)

I need answers. I am tired of sleeping 16-20 hours a day and not being able to take care of myself. From showers to getting proper groceries. To all the bills. I want to function. I live alone, but I really fight for that on a constant basis. Some people feel I shouldn't.

These are my current medications. Effexor 150mg, (but I've been up to as much as 600mg), Tegretol 300mg (because the uneducated doctor put everyone on a mood stabilizer and I have yet to see my outpatient psychiatrist), meformin 1000, spironolactone 50 (for androgen levels) and that's it.

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3 Replies:

  • Oh, sweetheart.Has any doctor checked, and I mean extensively checked, your glands that are responsible for the secretion of hormones? If so and if this has proved fruitless, I know this sounds crazy, but I have heard of a lady who had similar symptoms that ended up having something wrong with her pituitary gland in her brain that was treatable. Or maybe there could be a small tumor somewhere that is in just the right spot to mess up everything and cause your symptoms? Either way, I think an MRI would show any abnormalities. I'm not trying to scare you, I'm just kinda at a loss here and I know what it's like to be sick for years and have no one be able to help. After awile you WANT to hear a diagnosis, anything, so you can finally try to treat it......Best of wishes, good luck, and don't give up.
    Anonymous 42789 Replies Flag this Response
  • Many of your symptoms are normal when you get chance to mix with a winder range of effected people.People do not like to talk about the "hassles" like you have (for many reasons), so all those who are effected feel alone and unusual, this is why many people join support groups and why support groups can be so good.Glands and chemical balances make a lot of difference to EVERY ONE !You probably will not be happy with the next comment, because you already have enough on your plate.Many times, when someone who has a lot of problems, often they end up knowing more than their Doctor.I know this is a lot of hassle too you.BUT at least you know what is "real" and probably will be able to speed up diagnosis.Best of wishes to youTerry
    Anonymous 42789 Replies Flag this Response
  • There's other things other then PCOS which could cause lack of periods. I wonder about your PCOS diagnoses as you didnt mention excessive hair growth or that PCOS showed up on ovary ultrasounds.Maybe you should get a second opinion on the PCOS and see a gynocologist (ive found them great when it comes to female hormones and female hormonal issues). IF you do in fact have PCOS.. there is a very likely chance you have insulin resistance or hyperinsulinemia... anyone who is very familiar with PCOS will be on the look out for these issues which lead to diabetes (90-95% of women who have PCOS have these issues by the time they are 40 years). I myself have PCOS and was getting severe mental health issues (hospitalised many times due to them) due to having hyperinsulinemia (which then also can give hypogycemia which also can cause mood and mental health issues). It was horrific.. year by year.. mentally I was getting worst and no drugs were helping it. Then early this year I found someone who specialises in that and he was certain I had insulin issues (due to the PCOS and my health issues) so FINALLY after many years of severe mood issues etc I had a 2 hr glucose tollerance test done with the insulin levels and found out he was right. I did have abnormally high insulin levels. My mental health is now good due to an EXTREMELY STRICT low carb diet (far stricter then normal diabetes one). So if you do have PCOS.. be aware that some are sensitive to having high insulin levels and hence then get mental health issues .. and you should have your insulin tested. (Insulin problems also can cause other symptoms eg tiredness and headaches). More doctors need to be aware of just how badly abnormal insulin levels can affect some of us and both me and my boyfriend think there must be many in mental hospitals or jails due to this (I can mood swing so badly that I can smashing things when Ive taken too many carbs.. unfortuantely before doctors realised my issues and what was causing them.. they didnt believe that i couldnt always control my behaviour).
    taniaaust1 2267 Replies Flag this Response
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