[Wayfarer25]

i'm so aggravated right now i can hardly stand it. a little background:

i was on risperdal for several months. during the transition time i wound up in the hospital because my paranoia was so bad i was afraid of my own wife and kids. after that brief stay i leveled out somewhat for a while, but wound up with 3 mg of risperdal. in a short time at that dose, i gained about a dozen pounds and told my pdoc this. the paranoia was still kind of bad, but the hallucinations had pretty much disappeared. i also still couldn't seem to get out of my own head because i spent so much time listening to what was going on in there. so the pdoc decided to switch me to abilify.

now i'm all crappy again. i'm agitated beyond belief. still can't get out of my head. the hallucinations are returning (i'm seeing the shadows again, the same ones that watch me and put stupid thoughts in my head). i feel like i'm being pulled in ten different directions by something unseen and unknown and my mind is completely shattered like glass. i also price-checked the abilify through my insurance, and even if at a higher dose (i take 4 mg samples now) it works, it's still going to cost me $300 a month which i can't afford.

i've told my pdoc before that i cannot afford brand name APs. i also told him i don't want to gain weight or wind up diabetic. i gained 70 lbs on zyprexa before and my cholesterol was out of whack. i don't want to go through that again.

but now i feel like he's trying to shove something down my throat that i can't afford (which in the end will be a waste of time if i can't pay for it), and i'm not a very assertive person. when i get backed into a corner, i get violent both physically and verbally, and i'm at the point where i just want to spit all kinds of nastiness at the pdoc. i know this won't help.

i'm willing to try the 1st generation APs. i know they have nasty side-effects like TD, akathisia, etc. but to be honest, i'd rather have some disfiguring movement disorder than be a fat diabetic with potential heart problems. i just want a med that works, a med i can afford to take. i want some friggin' peace in my brain instead of all this chaos.

what's the best way to approach my pdoc without looking like a complete jerk? what should i say? i always feel rushed, intimidated, and insignificant when i talk to him which i know stems from me and not him. ugh, i don't know what to do.

sorry this was so long.

That sounds like a pretty crappy situation Wayfarer I hope that venting helped. As for advice: I'm not very assertive myself, so I find that when I have to say something difficult to my pdoc it helps to write it down and just give them the letter. Maybe that would work for you?

I got pretty agitated or mixed or whatever on Abilify/aripiprazole, but I found that it went away after a week or two at the same dose. I know you can't afford it (which totally sucks that you have to pay so much for your meds) so that probably doesn't make much difference to you, but it's worth bearing in mind while you wait to see pdoc.

I hope that you can find something soon that works, doesn't cost much and doesn't have bad side effects (a wonder drug!) as the med merry-go-round is no fun!

*Willow*

[Wayfarer25]

Thanks, Willow. I've always been a better writer than speaker so maybe I'll try that letter you mentioned. And yes a wonder drug would be nice but I'll settle for something that takes most of my issues away and has tolerable side effects.

I was also on abilify for a while and so was my brother. There is a high risk of suicidal desire and accomplishment with abilify. I had two suicidal attempts and ended up in the hospital for eight days while on abilify. My brother did kill himself while on abilify, in 2009. I do not have a high opinion of abilify.

I wish I had some advice but all I have is experience. I hope you find the answers you are looking for my friend. If you need someone to listen and understand, we are here and you are free to message me in a time of need if you feel that you cannot trust others at the time.

I know what you are going through and I can tell you from experience that there is good in life and things get better. Your friend, Glinda

[costello]

Originally Posted by Wayfarer25

when i get backed into a corner, i get violent both physically and verbally, and i'm at the point where i just want to spit all kinds of nastiness at the pdoc. i know this won't help.

My son is the same way. He acts out when he's feeling overwhelmed and doesn't know how to handle a situation. I think just being aware of that fact is a great first step. I know it doesn't sound like a big deal, but being able to see through ourselves is a huge help.

Btw, if your pdoc wanted a career where he could avoid people being nasty to him, he shouldn't have become a pdoc. People who don't feel well are sometimes less than pleasant to be around. I'm not saying that justifies being nasty to him, but I'm sure he must have a fairly thick skin. Or he'll need one if he wants to stay in this line of work.

i'm willing to try the 1st generation APs. i know they have nasty side-effects like TD, akathisia, etc.

As the atypicals have been on the market longer, they're coming to realize that they also have these side effects. My son had akathisia on a higher dose of Zyprexa.

what's the best way to approach my pdoc without looking like a complete jerk?

Write it down before you go to the appointment? My son's pdoc has an email address. A couple of times I've emailed him with issues and concerns. If there's no email address, write it out - maybe use bullet points.

You've tried several atypicals without success now. Just say you'd like to try Haldol or Thorazine or one of the older drugs.

[Wayfarer25]

Originally Posted by lightbulb7

I was also on abilify for a while and so was my brother. There is a high risk of suicidal desire and accomplishment with abilify. I had two suicidal attempts and ended up in the hospital for eight days while on abilify.

this is good to know, and explains why my mood has fallen into a pit and doesnt seem to want to climb back out. a couple days i was ready to die, but i've never had a plan. and even then, in my current mind set, i'm meant to suffer anyway, so dying isn't really an option.

either way, i'm sorry this happened to you and that your brother met an unfortunate end. thanks for shedding some light on this. i'll have to be careful then.

[Wayfarer25]

Originally Posted by costello

I think just being aware of that fact is a great first step. I know it doesn't sound like a big deal, but being able to see through ourselves is a huge help.

this is true, and thanks. the therapists i've always worked with said i had good insight. sometimes i think it's a curse, and that i would rather not know i'm ill, but i see the blessing as well.

Originally Posted by costello

Write it down before you go to the appointment? My son's pdoc has an email address. A couple of times I've emailed him with issues and concerns. If there's no email address, write it out - maybe use bullet points.

You've tried several atypicals without success now. Just say you'd like to try Haldol or Thorazine or one of the older drugs.

Yeah, I used to write stuff down before going to my general practitioner, so you're right. Why would this situation be any different. I wish he had an email address. I had a therapist once that was accessible like that. I guess the root of my problem is my insecurity in the face of authority, as I view the pdoc as an authority figure. I've always said that I'll never be a passive passenger in healthcare decisions, and now here I am, meekly accepting whatever drug he gives me instead of asserting myself. Thanks, Costello. Maybe I should stop worrying about what the pdoc will think and just make my wishes known without regret or fear of some kind of reprimand.

I wonder if Provigil (modafinil) would be helpful to you. I was taking it for two years. It gives you a brighter perspective and a clearer thought process. I took 200 m.g. per day once in the morning with or without food.

Also, Paxil was helpful to me. I did experience a decrease in appetite for about thirty days or so, but I did not miss it lol. There are also some sexual side effects, inability to orgasm etc. but that also subsides with time. This combination did not have the suicidal tendancies manifest, perhaps a combination like this could work for you. It wouldn't hurt to bring it up at your next appointment, what do you have to lose, besides your sanity lol.

I know how you say you feel with your doctor. That is how I feel to. Just a number etc. It decreases our confidence in asking for what we need or "complaining" about what our meds. are doing adversely. This does not help.

There will always be rushed medical staff. This is the nature of their occupation. We have to choose to take the first step and speak up. Take courage~ This has been very hard for me to overcome, because of a fear of rejection etc. The old saying is true, the squeaky wheel gets more oil. Get your oil my friend. I hope you feel better soon. Sincerely, Glinda Gail

[eskielover]

I don't have schizophrenia.....but was major depressant recurrant & very suicidal for many years......my pdoc thought that my stress level before having my neck fusion that was supposed to help my migraines would be helped with throzine....& I was taking compozine for the migraine nausea........I really don't have a good time line of my life during that period but I ended up having problems walking myself into the bathroom, couldn't even feed myself by by hand let alone with utensils. It scared me so bad.....ended up going to urgent care & they recognized that the compozine could cause problems like that....so they took me off that med....but a month later & the symptoms hadn't gone away.....my husband would take me to the bathroom before he left for work in the morning....1 hour drive 9 hours at work & 1 hour drive home.....I couldn't even get out of bed to take care of myself.....I was desperate for the bathroom by the time he got home 11 hours later. I was so embarrassed about not being able to walk by myself, I wouldn't even leave the house. Went back to the ungent care & they sent me back to the neurologist that I was originally seeing for my migraines.....turned out that he caught that the thorozine was probably the cause of my TD......it took another month for all the symptoms to end up going away....it was the worst time of my life honestly.....I am sure that there are worse horrible things, but for me, it kept me house bound just as bad as anything else could have. After that & all the other horrible side effects that I have experienced.....meds are not my friend.....but I understand that there are some aspects of mental illnesses where meds are desperately necessary. I do hope that you can find something that really works that you won't have those kind of horrible side effects with & will bring you back to a more stable life.

[Wayfarer25]

Thank you lightbulb and eskielover. I really appreciate your support. God knows I'd rather not take any meds at all but it's taken me years to realize I need them to gain some kind of stability. I'll ask about the provigil and see what my pdoc says. Finding something to make my thoughts clearer, hallucinations go away would be a big help. I know if I don't find something soon I'll wind up back at the hospital and I'd rather avoid that. Hopefully I can get an appointment soon. Thanks again for everyone's stories and advice. I'll put them to good use.

[costello]

Are you sure your pdoc doesn't have an email address? Can you call the office and see if he has one?

[Wayfarer25]

I'm sure he has one. Him giving it to me was a different story. He told me he doesn't communicate with patients via email. Which is unfortunate for me as I'm infinitely more comfortable with the written word. When I talk it all comes out jumbled or not at all.

[costello]

Originally Posted by Wayfarer25

He told me he doesn't communicate with patients via email.

That's too bad. You're not really asking him to 'communicate' via email - just to listen to what you have to say. Why wouldn't he want to give you a chance to use a form of communication that makes you the most comfortable?

Originally Posted by Wayfarer25

I'm sure he has one. Him giving it to me was a different story. He told me he doesn't communicate with patients via email. Which is unfortunate for me as I'm infinitely more comfortable with the written word. When I talk it all comes out jumbled or not at all.

I think that you should definitely write something down to take with you to pdoc then. I'm seeing a pdoc tomorrow and I've spent the weekend preparing my bits of paper of what I want to say/show him. You could read it out or just give the pdoc the paper to read: I've done both in the past.

All the best,

*Willow*

[cybermember]

Wayfarer25, my T doesn't communicate through email either; just by cellphone but I usually get her voicemail and she calls me back in a fairly reasonable amount of time.

Like Willow, what I have found to work for me in the past is that I wrote down what I needed to say and read from that when I called anybody. It helps get the initial concern across without sounding jumbled. I've also brought my journal in for my T to read particular entries to discuss because sometimes my head is not in the same exact place as I was when I was writing the entries. Also my memory can be a sieve in remembering things sometimes so writing things down really helps.

[Wayfarer25]

Originally Posted by costello

That's too bad. You're not really asking him to 'communicate' via email - just to listen to what you have to say. Why wouldn't he want to give you a chance to use a form of communication that makes you the most comfortable?

I really have no idea. It could be my perception related to insecurity but he's always come across as unapproachable. I mean, I even feel guilty leaving the guy voice mails addressing my concerns. Maybe I should just find someone I'm more comfortable with. I don't know.

[Wayfarer25]

Originally Posted by cybermember

Wayfarer25, my T doesn't communicate through email either; just by cellphone but I usually get her voicemail and she calls me back in a fairly reasonable amount of time.

Like Willow, what I have found to work for me in the past is that I wrote down what I needed to say and read from that when I called anybody. It helps get the initial concern across without sounding jumbled. I've also brought my journal in for my T to read particular entries to discuss because sometimes my head is not in the same exact place as I was when I was writing the entries. Also my memory can be a sieve in remembering things sometimes so writing things down really helps.

You know, that's a really good idea. I didn't think to bring in my journal. That would probably make a world of difference. My memory is my worst enemy sometimes, too. Having my journal handy would be a good tool to get conversation going. Usually she asks how I'm doing, I say not so well, and then the whole therapy session feels out of control. Maybe my journal will give it some semblance of order.

As far as my pdoc goes. Everyone's given the same advice, "write it down," so that's what I'll do. It seems like it works for everyone else. I have every intention of going off the Abilify as it's really screwing with my sleep, among other things. My only generic options left are seroquel and geodon, both of which I've no desire to take. So it's off to first generation stuff for me. I've got a supply of loxapine in my cabinet which I've wanted to try. So I'll ask the pdoc if I can give it a whirl.

I want to thank everyone for their help and stories and advice. I really appreciate it. I'm terrible at asking for help, but I'm glad I did.

[Wayfarer25]

Well, I did what you all said, and it worked like a charm. I was able to organize my thoughts so well after writing them down that I didn't even need the notes when I phone my pdoc. I told him I hated the Abilify and why, then asked to try the Loxapine I've had sitting in my cabinet for the last 4 months (never opened). 4 hours later, he called back and said it was fine. Success!

[costello]

Originally Posted by Wayfarer25

Well, I did what you all said, and it worked like a charm. I was able to organize my thoughts so well after writing them down that I didn't even need the notes when I phone my pdoc. I told him I hated the Abilify and why, then asked to try the Loxapine I've had sitting in my cabinet for the last 4 months (never opened). 4 hours later, he called back and said it was fine. Success!

That's fabulous! Success!

Thanks for sharing this. I needed to hear some good news right now.

[Wayfarer25]

so my whole plan backfired. the Loxapine left me so doped up i couldn't even go to work yesterday. i couldn't even drive. it was the equivalent of being drunk without the booze. so i'm back to the Abilify with the hopes that it a) works, b) i can find a way to fight the insomnia, and c) figure out a way to afford it.

so even though my plan backfired, everyone here gave me a way to effectively talk to my pdoc which is much appreciated.

[costello]

Originally Posted by Wayfarer25

so my whole plan backfired.

But you gave it a try. Now you know it's not right for you.

[Wayfarer25]

True enough.