Will I be on meds forever?

Since I was 15 I have been hospitalized 6 times and been given nearly every drug on the psychiatric market.
With that said, 6 years later I'm here trying to make something of my life. I'm about to turn 21...I missed out on the real teenage experience.
So I want to start my story and hope that someone can give me their opinion on what it is that I really should expect for the future.

Back in my first year of high school it was found out by my school psychologist that I was contemplating suicide...I surely was. (I had been struggling with depression for almost 2 years before things got serious) And so I was hospitalized, voluntarily. I would pray that someone help me, so the opportunity was one that I did not want to pass up. It was the start of a mess that changed my life forever. Their first round of action was an antidepressant drug called lexapro. (I can't understand how they could so quickly come to the decision to start drug therapy.) One week in and a target dose was still not achieved. I didn't know what to expect, I just wanted to feel better. And very soon they began to report that I appeared psychotic. (I recall some confused thinking, no bizarre delusions, no hallucinations, but started to feel as if I were two people, it's hard to understand.) The therapist assigned to me explained that a dissociation was beginning to happen due to some trauma as a child. I remember feeling glad to be understood. However, with more drugs, it started to become difficult to communicate, and I often tried to escape the hospital (I recall an intense anxiety)
I never had real hallucinations or delusions, but was treated as if. Then, I was as stoned as anyone could be. They put me on max for antipsychotics, and thorazine regularly because I was not willing to cooperate in there attempts to restrain me. It was a living hell for me and my family. And I had completely lost my right to some control, and my parents got less and less information about the reasons for this type of action.
And I was released, on a maximum dosage of a combination of drugs.

My parents attempted to negotiate with my school to let me back in. But, with my appearance, they denied me.
And I spent several weeks highly drugged at home, and due to attend a partial hospitalization program of which I spent the max amount of time because I did not participate. At that point, I began to see that I had changed. I was not a normal teenage girl anymore. I was living in a perpetual state of daze. With medications several times a day and no real explanation as to what exactly they were trying to treat. Though this may sound cliche, I wasn't alive anymore. To this day I feel as though I was dead for two years straight.

I was home schooled for a time. I made little progress in school, though I tried with everything I had to try to make it work. Before the ordeal I was considered intelligent and mature for my age. No longer was the case when trying to manage the drug regimen. A tutor I had recommended that I go to a state psych institute. Learned that they were conducting trials. (It meant free treatment, whether it was appropriate or not I simply wanted to be given some attention, wanted a chance to gain some more insight as to what was going on with me. ) And with a full psych eval, it was determined I was schizoaffective. Thinking back I can't help but think "How convenient for them." And I was eligible to participate in the first trials of ziprasidone (geodon) It was the start of another living nightmare. the more I was drugged the more I changed

I was completely given up on. Some student social workers set me up with an alternative high school and soon after begged my parents to take me out. Eventually was put in a more therapeutic setting and I met a therapist who went on to keep me as a client for the next four years. In the same time I met a doctor whom to this day gives me invaluable support.

So now I am a full time college student. I overcame the less than adequate high school education. Now I am at the point where I want to live a more normal life. Assuming I am truly schizoaffective ...I have never again had bizarre erratic behavior.
The diagnosis no longer seems appropriate. (as if it ever was)
It's unfair to live with that label, without understanding exactly what it is.

I've met other schizoaffectives in my life through the system. I can't relate to what they experience, or have experienced. When hospitals read my history see the diagnosis and look at me, they do a double take, don't believe it. However I have followed my doctor's recommendation to forget the label, that it means nothing, that we should just be treating symptoms.

I have begun to process my childhood trauma. I can't help but think that if I hadn't been medicated I may have gotten into medicating myself. I hate to admit that at some times when things got tough I was grateful for the meds. They numbed me (that in itself is abuse of the drugs.)

my life is changing now. I'm on a combination of four drugs.

Lastly, I asked my psychiatrist, "Do you think I will have to be on medication forever?" And she answered, "I don't intend to keep you on all of the medications forever, not all four. I think that you will have to stay on one or two, but not four! Someday when your life is smiling on you, we'll consider it."
I took those words to heart. I have struggled with anxiety and depression nearly all of my life. I never want to relive what it feels like to consider suicide. I imagine that the issue is my doctor's most pressing concern. I just want to be brave and try to get my life back.

Is this wishful thinking. Having been medicated for so many years I believe every day that I WILL get my life back. That this medicated living is not for me and I deserve the chance to take the risk and hopefully benefit from learning to handle my own emotions and work through life's problems like everyone else has to do.

I'm considering exercising my right to accept or refuse treatment. I'm considering discussing with my doctor that my parents are totally on board with me getting off of the meds.
If a plan is put in place to keep close watch on my condition is the request reasonable?

If anyone's read this far...any opinions?

Hi Loose_Ends,

First let me welcome you to psych central. I hope you find it a helpful and supportive place.

I'm sorry you had to endure what you did as a teenager - it's sounds awful and just plain wrong to me. There are unfortunately some really bad psychiatrists out there who just want to keep throwing drugs at things.

That being said, it sounds like you're doing well now, on a combination of meds that seems to be working with a Dr. that you seem to get along with.

I can completely understand why you'd want to get off your meds, but in my opinion be cautious. Work with your Dr. Ask her to explain exactly what med is for, and why she thinks you need to be on it right now. Make an informed decision. I'd also add that college is typically a time of high stress for most students and you don't really want to be messing around with your meds when you're in a high stress situation.

If you're determined to come off meds, do it the smart way. Taper off them slowly, one at a time, with your Dr's supervision. DO NOT quit them all cold turkey - that would put you through a withdrawal hell you do not want to experience and who knows what it would do to your mood. By tapering off slowly one med at a time, you can minimize the withdrawal effects and assess the impact of the lower dose on your mood.

I'll give you an example. I too am on 4 meds. I've been on psych meds for over a decade now. I too would like to get off meds some day. My psychiatrist has said he'll consider it once I've been sober a year, depression free for 2 years, and completely asymptomatic of the PTSD for 2 years. But he was ok with trying to reduce the dose of one of the meds I'm on, because I don't like the side effects. I wanted to try dropping by 1 mg - he said no way go down by .5 mg. I lasted about 10 days on the lower dose. After about three days my mood started to dip and it kept sliding. I finally called him and told him I was going back to my original dose. I found out that I definitely wasn't ready to come off that med, and that it was definitely working positively on my brain.

Please do yourself a favour and be smart and work with your Dr.

splitimage

What a terribly sad story. I really feel for you, deeply. I am bipolar and will be on meds forever. I have accepted that. But, I respect what you are trying to do. For you, you may not need meds for a dx you may or may not have. It's ok to experiment with your choices provided you have the right support on board. Including your T and pdoc and family is a really good idea. Also, timing the reduction of meds when you are stable is best. Remember, you have been on meds for years so it may take a long time to get off of it. Good luck with your process and try to be proud of your accomplishments. You're certainly a really strong person

From what you have said, your doctor sounds like a wonderful, helpful, intelligent and sensible person. I say continue listening to your doctor and her recommendations about when to reduce medications. Considering your experiences of the past and that you are still only 20-21 years old, I think it would be unreasonable to request going off all of your medications. Being brave isn't about living life without medications, bravery is realizing you have a disorder and taking care of it in appropriate and healthy ways for as long as needed. Just because something is called a "mental" illness, doesn't mean that all it takes is some mental strength to overcome it. There can be physiological defects in a person's central nervous system that will always require medication to correct. This is one of the reasons why medical school is required in order to be a practicing psychiatrist.

It is probably very hopeful and likely that in time you'll be able to reduce the amount of medications you take, but it's also possible you'll need to continue to take one or two medications for a very long time or for life. There is no shame in this. There are lots of medical conditions that require a daily pill for life. Having to take medication everyday can become very tiresome, I know. When this happens I have to remember that there used to be a time, in the not too distant past, when there were no medications available and a person lived in complete misery, died young, and/or was completely shunned by society. (Actually, this still happens today with some people and in some places that don't have access to care.) Often times, it is the medication that gives you your life back once it has been struck with an illness.

You seem to be at a pretty good place in your life right now. In college full-time, working with an excellent doctor, seem to be making good process in dealing with your difficult past, and your mood appears to be quite good. Don't mess with what is working. Be patient. Work with your psych to know when the best time is to reduce a medication and right now she doesn't recommend it. Go with that.

The truth, ------------- yes

Make a plan with your doctor that outlines your end goal. Maybe going off all the medications is not right, but tapering and seeing what you can drop and what you need to keep may help you.

Remember that taking medication does NOTHING to impede your life or your goals. Yes, you may have to alter them, and you may have to give some things up but it doesn't stop you from having a good life. Even on medication, it cannot stop you from feeling a host of emotions. If you are feeling blunted and numb from what is prescribed you may want to talk to your doctor about reducing medication. Basically, medication will not prevent you from losing your virginity, it won't prevent you from getting married, it won't prevent you from graduating college and it won't prevent you from doing some work. (Be it volunteer, temp jobs, or real jobs...) There are plenty of people on medication who go through and get their Masters/PH.D. There are people who experience abusive relationships, there are people who experience loving relationships. You can still make friends and it shouldn't damage too much of your cognitive functioning. (If it is -- talk to your doctor)

You will ultimately make the important decisions in your life and you will ultimately decide how much help you would like. You have the power to change the outcome in your life. You're not hopeless nor are you powerless.

Hi Loose Ends,

As an FYI, I completely got off of a 4 med psych cocktail in 2010 after being on meds for 15 years including tapering time. The key to my success and many people in similar situations is a very slow taper. With the exception of one med, I tapered everything at 10% of current dose every 4 week.

My advice to you when you are ready to taper is to be cautious and do it very slowly, particularly since you have been meds several years and on a multi cocktail.

By the way, my former psychiatrist thought I needed to be on meds for life and that just wasn't true. I am very confident that once I get some treatment adjusted for a medical condition I have, I am going to do great.

Just so you know, I only glanced at your post so forgive me if I am missing anything. I did notice at one point, you were treated brutally by the mental health system you were in and I am so sorry. I can't imagine that horror.

Hope this helps.

Printer

As someone who began taking meds at age 14 and am still taking them at 29, I can relate to you.

You ask why the decision was made to put you on Lexapro so quickly. That's because when you have suicidal depression, the protocol is to start you on an anti-depressant immediately. For by then your depression is too severe for any kind of therapy alone. Lexapro was actually a good choice, this SSRI works for a lot of people with minimum side-effects.
However what confuses me was the decision to hospitalize you when all you had was depression! This seems severe. Even when I was 15 and had psychotic depression (meaning full-blown psychosis with hallucinations, delusions, etc. caused by underlying depression) my psychiatrist felt it was better to treat me from home using oral anti-psychotics rather than hospitalize me, because he felt my anxiety would cause me to freak out. At the time they thought it even might be schizophrenia. It worked however, anti-psychotics stopped my psychotic symptoms and we tried a few anti-depressants until we found the right one . Then the anti-psychotics were stopped.

Believe me if you had hallucinations you would have known it. Though it can be hard to remember as the brain erases memories that are too traumatic.
What kind of meds did they have you on, Geodon for example is one of the newer "second-generation anti-psychotics. These are powerful meds that take a few weeks to start working and have a lot of side-effects. They are really only meant for the long term management of schizophrenia, though shrinks tend to over prescribe them for everything from bipolar syndrome to severe depression, they should be a last resort unless you are psychotic. Other meds similar to Geodon are: Zyprexa (olanzepine), Risperdal (risperidone), Abilify (aripiprazole) and Seroquel (quitepine).

Do they have you on the above drugs? What are the 4 drugs you are taking?

The good news is that you're in college and are therefor functional.
Are you functioning well in college?
I definitely wouldn't just stop everything, listen to what AnnD said.
Also, as you are an adult, your parents being " on board with your decision has nothing to do with anything, you're not a minor anymore.

Best of luck.

-Tom

I'm sorry that you had such a traumatic experience with meds/hospitalisation especially at such a young age I can understand the push-pull of needing meds vs wanting to be off meds. The only way to work out if you will need meds forever or not is to try coming off them (under medical supervision!) and see what happens. However it sounds like your pdoc is willing to work with you on the med-thing, which is actually a really good sign Loose_Ends.

I'm confused about why you would be labelled schizoaffective if you've never had hallucinations or delusions though You said "I never had real hallucinations or delusions.." and so I just want to clarify - do you mean you've never had anything that could possibly be considered a hallucination/delusion, or you've never had anything you consider a 'real' hallucination/delusion but that doctors may consider as hallucinations/delusions??

*Willow*