Off topic but desperately need HELP!!!

[supermum_ms]

Hi Guys and Dolls,

I posted this on the anxiety forum, but never got any reaction, this is happening to the young man my daughter is living with, he is a beautiful young man, no dx of anything other than GAD (general anxiety disorder) back in his teens, he is in trouble right now this minute and we/I need help.

I would like some guidance from anyone who has taken Seroquel. A young family member with a history of anxiety with episodes of paranoia (sp) resently returned to the psychiatrist that treated him when he was younger because of feeling his anxiety was starting to affect his sleep and rear its head to unmanageble levels again. Nothing of any significance had happened but he did not want a repeat of depression etc that happened prior, he has been unmedicated for a number of years without any major incident.

He was prescribed seroquel 100mg and pristique ?? mg with instruction to increase the seroguel as he needed, no instructions on how, when etc to do this. He has been experiencing gastric reflux and vomiting, forgetful but overall he was feeling less anxious on the meds. Problem, the other day he was dilusional, talking none sense, giddy and having a grand time, whilst being unable to walk unaided, and memory loss, nothing like his usual self at all!!. He has never before experienced or displayed any of these behaviours as part of his anxiety, it was very dramatic and alarming behavior.

Immediate concern was an adverse reaction to the drug, he was also unable to remember how many he was taking so an emergency appt with his treating Psychiatrist was arranged. He has now been perscribed 900mg of seroquel and is to continue with the same pristique dose, we dont understand why he is 1) still being perscribed the drug thats induced dilusional behavior etc so a major red flat if newly acquired sx and 2) why such a high dosage for someone with mild general anxiety. 3) why would a higher dose not be thought to affect him even more adversly?

I have been asked to do some reseach on seroquel and from what i am discovering, this drug does have all his newly experienced issues as side affects of the drug and the dose perscribed is above the recommended highest dose of 800mg, though it seems it has been perscribed in even higher doses for psychotic behavior seen in scitzofenia (sp). He has never been on zoloft, endep, or tofranil etc that our other family members have and are on for their anxiety and are becoming concerned at the choice of medication and now the high dose.

We would be deeply greatful of anyone's imput, please if you have any experience with seroquel, good or bad it would be helpful to working out what to do. My gut is telling me to find another dr, get him onto a medication that is not going to cause more problems than the anxiety he experiences because his current behavior looks like its going to end in disaster. I understand you may not have the medical training but someone must have some experience or insight.

Thank you in advance!!!!!

UPDATE SINCE ABOVE WRITTEN:

The situation is now dire!!

No exaduration, he is on 24 hour momotoring and awaiting placement in a psychiatric unit. How the heck can this happen to a wonderful young man who was only concerned his anxiety was starting up again.

After his psychiatrist put his dosage upto 900mg of seroquel without incrimental increases he was taken to see another dr. Told sometimes it takes time to get the right dosage worked out and to give it time. The dilusional behavior is now out of control!! But this was recognised as a notable reaction and the higher dose maybe the correct one.

He is basically at the mercy of those around him, he is in another world, he has never ever been like this before, his girlfriend is calm and trying to keep him safe but will not give him another pill. Too scared to give him more of what could be the cause and too scared to not give him what has been perscribed. He wakes up calm and then after his meds he becomes incoherant, dilusional rants, hysterical laughter with any electronic gadget talking to him, getting worse and worse.

Some one please please help!

Cheers.......JJ

[supermum_ms]

HEAR! HEAR!

I couldn't of said it any better. :-)

Cheers.....JJ

[HVAC]

The greatest thing that ever happened to me was when my psych file got permanently lost. I kinda helped it a long. Even my PCP looked at me like I would bite when I filled out on the intake I was Bipolar. Later she said you are the most together person I know. She admitted she did not want me for a patient. My Neurologists love to pin things on MENTAL.

I HATE LABELS. People are far more intricate. In the future when they understand brain mechanics they will laugh at what is done in the name of medicine today.

Eastern philosophy and trying to live in the moment has been the best medicine for anxiety, depression, and pain for me. I am loving self-hypnosis. When it looks like something scary is happening I try to stay in the moment.

In the last few days I found out I had PPMS and the drugs are useless and the university announced they are consolidating libraries on campus and my husband's job may turn out to be a redundancy. I can either freak out or take a deep breath and continue with today.

Alex

[supermum_ms]

You are right about so much, I actually had your story in my mind as i was watching this unfold, not going to happen again if i could help it.

The first big thing wrong this tiddly winks of a dr did, was give the kid seroquel 100mg and told him to take them as he needed, he was eating them like lollies because he didn't know which way was up. Disfunctional doesn't even describe how bad he got, after the first few days on prestique that made him high as well as the seroquel that turned him dilusional, he couldn't even open a simple door. So why not give him some more to really gonk him out (logic of a wood duck, quack quack), at least he wasn't worrying about being inadequet anymore, please note i'm being very very sarcastic!!

Sad to think this kid who is a natural musician, passion for music that is his chocolate and safe place lost it all and the psych's comment when told was "well some people think they are talking to god and some people think they are talking to god!" My understanding of that pearl of #*$^$ was that he only thinks he's a musician not that he really is one, his intuitive ability to play what he heard was in this psych's thinking, sign's of dilusions so its ok if he cant play anymore he couldn't really before. grrrrrr

DD needs some TLC, cracks are forming and for her she's on the down side of a slide, her slides are long and hard, she's already had an episode of shutting down. When that happens she cant see or hear, locked inside herself as she deals with the overwhelming feeling, Asperger moment, they dont happen much anymore, so when they do she's not coping. tick tick tick time to heal and gather my little chicks home.

Cheers and thanks

JJ

[HVAC]

JJ,
   I am on Seroquel for anxiety and love the drug however I never take more than 75mg, usually 25mg. When I was a teenager I started my nightmare with Psychiatry. What I found is the prevailing notion that more is better with drugs does not work for my body. Psychiatrists are worse than Neurologists as far as bristly egos.

They used to keep me so gorked up on so much stuff life was not worth living. The worse I got the higher the doses and added drugs. Pharmacists had to call the Doctor to fill my scripts because it what was prescribed was a lethal overdose. I trusted these guys and went on for years.

I finally found a world class Psychiatrist who realizes no two people are the same or react to medication the same. It took me over fifty Psychiatrists and swearing off the Specialty. I had to go to this guy privately and pay cash. He is worth every penny.

  It took years to get a good combination of drugs for me and talk therapy every week
helps. Diet and sleep are very important. Most of my problems came from bad sleeping habits and not adhering to a balanced diet.

Alex

  

  

[supermum_ms]

Thanks for the support, admitt my mummy radar has been on over drive with worry lol

Just had the 'kids' over for dinner, its been 4 days since he's taken a seroquel, he did take 1 Zyprexa last night but had already desided he needed to understand what he was taking and was not going to take anything else. Dr appt monday, to monitor his withdrawls and advice him of who to see, i've advised a phychologist to help him understand himself, thinking behavioral therapy might help too.

THANKFULLY he's coming back to normal, still not there yet but he's not psychotic anymore, he's now dealing with the horror of what he's remembering he's been doing. He's a good lad, sensitive and this is going to hurt him, we talked for hours about it, made sure he got that we care for him and will support him no matter what. I fought back tears telling him how much we cared about him and what we think needs to happen to save their relationship. DD has oven burns up and down her arms from not coping, her focus on him and not on her own safety, big sign she' s loosing it, that and the tears close to the surface and easily spilling.

He didn't get upset about moving out for a few weeks whilst the drugs get sorted out, he'd already noticed dd was frightened, worked out for himself she needed a break and he's going to his best mates house, seeing a new dr and not taking the meds with medical supervision, few!!

Quix: i was on the same wave length as you, he says he was on pristique (sp) for the worry that was starting to pick up (life is good but i dont deserve it thoughts, self esteem), nothing out of control, pananoid thoughts started and he started getting hyperactive so told the psych at his scheduled appt. Psych talked to him about needing something to bring him down and put him seroquel as well, he only has skattered memories from then to now. He remembers being told to watch out for bipolar or skitzaphrenia but didn't know what he ment, i'm not sure i do either, is this adequet information on the side effects?

He draws a blank at the emergency appt where he was put on the 900mg seroquel, he'd had a few days drug free by the time they went back for the second emergency appt so he was starting to see and hear more clearly, he says he was worried by the psych's attack on dd, couldn't understand why he was being defensive. Get this, the psych out of the blue started telling dd i cant make him do anything, kept on saying the text book this the text book that, said something about not suing which shocked and made them all feel more uncomfortable.

So, it seems he is a young man with bagage, nothing much but being smart he didn't want a repeat of his teen depression, psych gave him prestique that hypered everything, and then gave him a drug to bring him down to earth, didn't work, sent him more off the planet. Psych still didn't recognise it was the drugs in the first instance, or the second and gave him more which sent him out of orbit. After all this his mum asked the psych what is his dx and the psych said i havent been able to pin it down.

As he said tonight, if i had any idea this could happen i wouldn't of even touched it, "i was feeling inadequet because j is so successful, couldn't understand why she picked me, i didn't feel worthy of her love" Yep he's worth the effort!! Yep he needs a bit of help with his self esteem but i think he'll get it under control, if only he could see him self as we see him, give it time and i think he will!

Back to cheery JJ

[Quixotic1]

This is far out of my expertise.  He needs a new doctor who can re-evaluate the problem.  It sounds like the first psych felt that he was beginning to show the signs of schizophrenia and began the meds for it.  

One scenario is that this young man was sliding into schizophrenia - right age for it - and has continued to slide despite meds.

Another is the one that you are worried about - that all the symptoms are a result of the wrong meds being used.  I agree that the use of these meds seems ill-thought-out and not well monitored.

The two situations can look alike.  A newly schizophrenic may appear just anxious to those around him, but the interview may demonstrate psychotic and disorganized thinking or delusions.

Since you have no confidence in the doctor you need to find someone who will take him and sort this out.  He will need to be taken off all the meds and it may take some time for his brain to come back to normal if it is the meds that are doing this.

My dad went through a similar thing.  His  dodo of a GP put him on Zyprexa thinking it was an anti-depressant.  It through him into a vegetative depression, and his memory decline started then.  He felt it was a full year after stopping it that he felt he could think normally again.

This is all sad and very terrifying.  But, my advice is to find someone or some clinic who is willing to start over with him.

Quix

[melissabarnett]

if all he had to begine with was (GAD) then check out Paxil cause im takeing it iv had GAD sence i was a kid but didnt know that was what i had  cause it was only showing up in hives and sever nervness till i hit the year of my late 20's  i couldnt sleep sometimes  for 2 or 3 days with only a hour or two of sleep i would hyperventalate or just freak out and i felt like i could fight with the little voice in my head ((any one that P***ed me off that day))

and tell them what i realy thought of that  cause im not a vilent person i just smile and go on  but boy i would tell u off in my head that night while i was trying to sleep  and sometimes i would just  pass out   i thought i was going crazy so i went to dr told her everything that was going on and at first she put me on Effxer CR but that just made me foggy in the head

and realy didnt do mush to releave me  of anything so we tried paxil and boy o boy did that help i take it every night  and sleep very well wake up with no GAD or that little head arguing i would do every time something went wrong i jst found the right way to express my feelings sorry to go in great detell on this but he needs to find the right dr and get back on track  cause those meds dont seem to be helping him only makeing him worse ill keep you all in my prayers and thoughts hope this helped some.

[supermum_ms]

This is an update, i wish i could say its all good but alas its just worse!!

His mother and my dd took him back to the perscribing psych and instead of the dr being equally alarmed at the sudden deterioration of his patient, he wasn't surprised. He became angry and defensive at their medling, annoid they researched the drug even stating "you can't believe everything you read on the web!"

The long long list of behaviors he was displaying was handed over and all the psych did was hand it back, uninterested (WTF?) threatened to throw my dd out of the room and she stresses all she did was ask questions. His mum let her deal with the psych because she was overwhelmed by it all (she's as proud of my dd as i am, for sticking up not only for herself but mainly her son!) mum wants him off all drugs but dd is walking her through how unlikely that is going to be.

OK, so here we had a functioning young man, employed, studying to be a music teacher, madly in love, active social life, independant, sensitive and not ever aggressive, intelligent and thoughtfull etc one of the good ones any mother would be happy to have him as a son-in-law even with his occassional bouts of low self esteem, anxiety and mild parranoia (sp).

Who is now, totally dependant on others, unemployed, dilusional, exstreemly paranoid, displaying skizafrenia (sp) at its exstreem disfunctional level, hyperactive, aggressive towards himself, memory lapses, talking to himself and the appliances that are talking to him, a danger to himself and others (eg driving down the wrong side of the road, no more driving!), inpotent, no longer musical, unable to study. No exaduration he's a mess!

Apparently this is fine and dandy for the psych, turn a functioning young man into an unfunctioning dependant one is not a problem. He increased the seroquel to 900 because he was displaying hyper behavior when they had the last (emergency) appt, i dont get this psych's logic at all. DD told the psych he had a moral obligation to inform his family of the possible behavioral changes so he would be kept safe, psych said "no i dont!" OMG!

He did accept the patient wanted to get off seroquel, changed the meds to ZEPREXA and told them to expect the same behaviors, tapering off seroquel means he will be for the next week taking both these meds and the pristique. The psych now believes he has Bipolar 1, i believe he is ONLY psychotic and dilusional on seroquel, drug induced NOT bipolar 1 or even fitting bipolar 2 when unmedicated!!!!

I've just googled ZEPREXA and get a million hits of law suits because of the excessive weight gain (app 66 pounds in a year thats 30 kilos) and diabeties, patients harmed by this drug with current pay out of 2.4 billion and more law suits still pending all over the world. Nothing said about this 1 in 5 possibility to the patient or the family, no blood test or monotoring and to top it off i cant even find any of his adverse reaction on seroquel even mentioned with zeprexa, so its not the same at all.

More worried than ever, would you risk adding diabeties for life on top of still having your mental health issue? Not going to even mention the peadiatric deaths associated with zeprexa, he's only just out of his teens. These are last resort drugs, skitzaphrenia (sp) and drug resistant bipolar 1 patients, even if he was bipolar 1 he's not drug resistant because the psych has not even bothered to try him on ANY antidepressants to see if they would help him.

I fear for this young man, my dd is now grieving the loss of the love of her life, her mental health is cracking she will never cope being his jailer, the last month has already taken its toll on her. Its fine and dandy for this idiot dr to tell her its not about her but who is the one that is giving up her life to keep him safe. She is risking her career, future, finacially supporting him as well as the emotional support. She loves him and it is pure but even she admitts she would of been to scared of him if she had met him as he is today, everyday she is terrified she cant get him through it and something will happen to him.

At 23 she has become his mother and jailer, not his lover and sole mate, he is now the man she fears for and of! I have to get him away from her whilst he works out the drugs hes needs or she will loose everything that she has worked so damb hard to acheive, it may not be about her (idiot dr) but he sure made it that way!!

Sad.........JJ  

[Karen99]

This is a very difficult situation.  Not only could he become a danger to himself, he could become a danger to your daughter if he is not in touch with reality.  Are his parents able to take a more active role?  THEY SHOULD BE THERE WITH HIM.  If he has become worse since beginning the medications, and I believe you have described it as such, discontinuing the Seroquel might be the correct choice.  Get the name of the other medication he is taking too.  

Many of these psych drugs can have the opposite of the desired effect.  It would not be the first time I have witnessed a person made worse by a particular med, then have the dosage increased with the same drug that is causing the problem.  The psychiatrist do not always recognize adverse effects.

[supermum_ms]

It just gets worse, and worse and i'm 100% sure its the drug causing this. My daughter and I sat down and ticked off all the things that she knows is happening that did not happen ever before in there relationship and from what his mum has said.

In order for her to relate to the medical jargon, she would retell something that he has done eg. "talking about needing an alias and catch the plane to get away from them" Telling her he wants to butt out his cigarett on his head but knows thats not something he is suppose to do etc.

If he was and is a young man with psychotic dilusions thats one thing but to have him become one when he isn't is shocking to the extreem. WHy would uping the meds make things better, for heavens sake. They saw another dr who was very simpathetic to the situation, adviced trying the higher dose to see if it helps but was willing to imediately change the meds to Luxapro (i think).

No one knew what the right thing to do was, stop one drug with out tapering off doesn't even sound right but to change it imediately for another when he WAS ok-ish without anything before all this crappppppppola could make it all so much worse. He needs and is getting 24hour monotoring, fat lot of good that is, the only thing keeping him in the house is there is only one door and he is incapable of working out how to open it so he can escape.

They have been instructed to wait until his next appt with the psyciatrist, hold off until then but if he gets to hard to manage, call the mental health unit and they will admitt him though the dr adviced against doing so.

I have said if he was my child, i would be arriving at the psyciatrists office, my checked current behavior list (since taking the meds) with a comparitive analysis of his prior behavior (ever) and demand they admit him so that he can be helped whilst he is coming off the poison thats caused this to happen. I also told them i understand why they do not want him to take anything but under no sucumstances should he be taken off meds without instruction from a dr. He is not himself, psychotic and dilusional and by that definition he is dangerous and he needs medical intervention to get through this.

Stuff and non sense, this isn't suppose to happen. DO NO HARM year right!

Cheers i think JJ

[The_Lorelei]

I agree that he should get a second opinion.  I have very limited experience with Seroquel, only one or two friends on it, but they have VERY bad anxiety/bi-polar disorder.  I've not noticed any side effects with them but drugs are different for everyone.  It's true that your body does need to get used to a new mood disorder medication before it works properly but that's more for something like nauseau and headaches.  If the medication is causing such an extreme change in behavior than it's, in my opinion, not the right medication for the person.  If the doctor is unwilling to make a change to a new medication, it's time to see a new doctor.  Of course, this is all just my own opinion I really have no medical background other than my own experiences to go on.  Stopping the medication cold turkey is not a good idea without the doctor's advice so, if it were me, I'd see a new doctor.  

I hope that things turn out better for your daughter's young man.  

[twopack]

The thing that struck me most here (besides the entire horrendous situation) was when you mentioned your gut instinct is to get another doctor for this young man.  I think I would go with the gut on this one.  There seem to be just too many weird aspects.

Can he be treated in a regular ER?  They might at least be able to safely monitor discontinuing of the drug.  It doesn't sound like he's been on it very long.  Maybe there wouldn't be any real problems coming off it if he just started?  If he wakes up calm I would sure be tempted to leave him alone.

I hate to see him shuffled off to a psych ward.  In general, I trust psychiatrists even less than neuros.  Yeah, I know they perform a very necessary medical service and the medications they prescribe are often life savers.  BUT, if Australia is anything like the USA, they tend to drug first and ask questions later (when their patients are too zonked to answer).

Hope this gets a speedy and safe resolution.

Mary

[supermum_ms]

I'm scared for him even more now, he is talking about hurting himself, what a nightmare, he is not this person, i mean that totally!

This seems to be a heavy hitting drug, generally perscribed for psychotic behavior seen in scritzafrenia (sp) bipolar 1 and i've found it off label used as a sleep aid for chronic insomnia. The boards are a mixed bag of horror and redemption stories, why this drug was given to him in the first place is wrong and now that the dose is so high it's even more wrong.

Everything, and i mean everything that is happening to him is listed in the medical research as being serious adverse reactions to the drug. He wanted something to help him sleep because if he gets a good night sleep his general anxiety during the day is managable. Instead he is not on this planet, and i'm worried, for me that is saying something, not one to become alarmed unnecessarily but he is becoming a danger to himself as he fluctuates between reality and dilusions.

My daughter is a trooper, how she is coping through this is beyond my comprehension, his parents are helping with the 24hour monotoring but they are trusting her to keep him safe. I couldn't be more proud of her love for him, she will not let him down but i fear it will be too difficult for her own mental health issues. Lordy give me strength to help them get through this, i do so want this young man to stay on this planet with us, he is worth helping.

i'm worried!

JJ

[Lulu54]

Oh JJ, what a nightmare.  He must be suffering terribly and all of you who care for him too.

I know nothing about seroquel  Does this drug need to be titrated up or down in dosages?

When my DH had his open heart surgery, they took him offf the xanax the dr. rx'd for anxiety COLD TURKEY    It took a few days for the drug to leave his system and the it put him into a near psychotic event.

Could something like this have  happened?

I am so sorry all of you are suffering right now.

feel better,
LUlu