Tuesday, October 4, 2011

Schizophrenia Medications - My Experience with the Atypical Antipsychotics

Although the first time I ever took a neuroleptic antipsychotic was in 1971 at age 18, I was prescribed them regularly starting in 1978 until 1993. I have taken almost every one available and they were almost universally awful, mostly because of devastating side effects. If they were effective, it was difficult to know because of these side effects, which made me refuse to take any one of them for long.

When Clozaril came along, the first atypical antipsychotic drug, I was one of the first Medicaid patients in CT to be put on it. Alas, I have to admit that I am unable to evaluate its efficacy in my case, because I experienced once again such side effects that despite 3 or 4 serious trials on it, I was relieved when my white cell count dropped so low that I was forced to stop taking it. I know that other people said I "did better" on clozapine, but they'd said that about Haldol and Thorazine and Prolixin yada yada yada when I'd suffered the agonies of hell on those. So whatever they thought, that it was worth it for me to suffer such side effects, meant little to me in the end. They were not in my body, and it never seemed to matter to them ("them" being largely the psychiatrist and various mental health "officials" supervising me) that I was in exquisite pain on any of the drugs so long as I took them.

As a result, when they told me that it was worth the side effects to continue taking the clozapine, I finally told the doctor I was seeing to "go soak your head." At which point, she summarily dumped me! Fine, fine. That wasn't exactly copacetic, as they used to say, but I got another and finally I was able to stop taking the drug when agranulocytosis seemed imminent. Then it was back to Prolixin for a few years, which was bad, but frankly not as agonizing as the Clozaril had been.

But what side effects did I have? Well, it turns out that I would have those same side effects some years later on Seroquel: after taking the drug at night I would within a half hour have  unbearable feelings of impending doom, the sense that if I closed my eyes to sleep I would without a doubt die that very night. It sounds trivial but it was one of the most horrifying feelings I have ever had to deal with. Then I found I could not swallow my own saliva, which was copious and spilled out onto my pillow by the "pailful" -- when I did fall into that deathly sleep I was so terrorized by, I would wake with slimy sheets and pillowcase. Did I mention sedation all day long, and weight gain? No? Well, there were those as well. It isn't just Zyprexa that is guilty of causing obesity and diabetes. Long before I took Zyprexa I had already started to gain weight, and I believe that was because of taking Clozaril for so many trial runs for so many months.

But then, after waiting until 1996, Zyprexa, that miracle drug for me, that drug from hell as it turned out to be as well, came out and changed my life for good, and for ill. I loved it, and I still do. But I would never take it again. If you have not read about my journey with this medication scroll down to earlier posts and look for "Schizophrenia and My Conflict about Taking Medication" which tells the tale.

After Zyprexa came Seroquel, and then Risperdal which had all those side effects and then some, including sedation so extreme that a friend considered me nearly comatose. In fact, every time I agreed to another trial on it and I took it for longer than two weeks at any dose, even as little as a half milligram, I ended up catatonic. The last time led to a hospitalization so traumatic that was it for risperidone.

Have you guessed by now that I have tried most of the atypicals available in the U.S. if not all of them? I am now on Abilify and Geodon which I will tell you about at the end of this post, but first I need to give you the lowdown about how I did on 1) Saphris, 2) Fanapt and 3) Latuda.

Saphris was from the start one of the most deadening drugs I have ever taken. Yes, the voices were drugged up and deadened. But it seemed to exacerbate all possible negative symptoms I ever had. I simply had no drive to do a thing but watch television all day long, smoke and look out the window. I did nothing else, barely even bothered to eat. In fact, I am going to do something I rarely do here, which is to post a poem that I have not yet published, despite the fact that it might mean I cannot do so elsewhere in the future, because I wrote it about the experience of taking Saphris, and the dullness and negative symptoms it induced.


DISTEMPER


A new pill for distempered minds leaves me myself,

untempered. Not that being less prone to tantrums

is a bad thing. For instance, I no longer snap and seize

at the fluorescent shatterings of daily living.

But this placidity borders on clinical torpor

so that even daytime television

seems like a worthwhile invention,

as good a way to spend sixteen hours as any other.

I’m awake all day and all night, too conscious --

thinking, thinking, not bored, but not quite interested enough

to put my hands or mind to any enjoyable task

while a K2 of necessities goes undone:

dishes, laundry, cat litter—all insurmountable molehills.

The ancient cathode ray flickers and the talkies chatter on.

Deep in my chair, smoking away five years of sobriety,

my drugged eyes fix six hours on “America’s Top Model”

and then on a woman heavy with twins who smiles

on her "Nineteen Kids and Counting."

A dozen should-dos fog me into lumbering up.

and I aim myself towards too many goals to count on,

but quickly all recede into a cave of twilight.

Time for “Junkyard Wars” on channel 101.

I sit back down, light another cigarette

and press on the remote.
 
Fanapt? I scarcely recall why I did not like the drug, but I do know that I barely took it a week before i nixed it. I think I could tell it was making me eat too much, which was the kiss of death almost before I could see if it helped me . One of my biggest phobias now, after becoming obese on Zyprexa, is that I will never let that happen to me again. It was simply too hard to get the weight off again, and I will not repeat that struggle or go through what it took to do so. Not if I have any say in it, which I damn well intend to.


Then we have Latuda, of which I once sang praises. You should know that I have had second thoughts and changed my mind about this drug. Oh, it did stop the voices and such very quickly, but it too induced a kind of grayness to life, an indifference and colorlessness that was painful. I could do nothing, even if I wanted to. I felt like nothing interested me. The only difference between Latuda and Saphris was that on Latuda I understood what I was missing, I knew that I wanted to want more, whereas on Saphris I simply didn't feel like doing anything, and forgot that life could hold much more. The latter state was much worse, but luckily someone picked up on it, and the dangers it held, and I got off it before it became a pattern.


When I was in the hospital this past summer for 6 weeks I might have been ready for discharge earlier, had I been willing to take either Zyprexa or Latuda, but I refused, because I knew perfectly well that once discharged I would adamantly refuse to continue either drug,As I pointed out, what was the point of getting started on a drug only to cease taking it the minute I got out of the hospital? It made no sense, especially were I to leave below my baseline, with the assumption that thte drug, being administered on the outside, was what was going to help me recover from the on-going psychosis. It simply made no sense to get me started on a drug I would refuse to take. 


Luckily the attending doctor, a very nice older woman from Rumania, got the point and even agreed with it, so though the stay was rough, largely because we had to deal with a lot of my reaction to the trauma I had experienced at two other hospitals the previous year, I was able to stay on Geodon and Abiify without adding another drug I wouldn't continue taking.


Now, as to those drugs, the combination of A and G: I consider them to be my "output" drugs, compared to Zyprexa, which was an "intake" drug. On Zyprexa I take in and attend to everything: reading, learning, and also food. I gobble everything down and retain it. I learn a great deal and I also become obese. On Abilify and Geodon, I do a lot, get a lot of work done, for they are my "output" drugs. I can control my appetite and do not feel as driven to eat. On this combination I write and write like mad, and I do art like there is no tomorrow. In fact, sometimes I cannot let go of my pen, but must write until my hand hurts...But taking in is of less importance. In fact, though, I have to force myself to read or eat and to read a book becomes a chore of the first order. This not good, but I have had to make the choice and it has been acceptable to me. 


All my life I have not been productive, due to schizophrenia. I have been an unproductive, non-functioning citizen. Finally, I can produce art and writing, and I revel in it, even though due to the horrible financial strictures of Medicare,  Social Security and Medicaid, and my own needs for housing, medical coverage, I am unable to get off any of them. This forces me and most disabled people to remain poor, essentially non-productive. Maybe I produce, but uselessly as I cannot earn a living. So I produce ina vacuum. I produce,  but I give everything away. I donate my sculptures to good causes, not a bad thing, and I save my "flat" pieces until such a time as I may be able to sell them, or trade them for useful items I need for my art or apartment. What else can I do, since I cannot earn income? It is a terrible bind, once which President Obama wanted to repair, but will not be permitted to do,  due to the politics of our time.


So, here is where I am now. I take Abilify with Geodon to temper the over-activating effects, the temper and irritability Abilify alone tends to induce, plus Lamictal, a mood stabilizer that I frankly use only to control what I've been told are temporal lobe seizures in the form of olfactory hallucinations; Topomax to reduce the frequency of migraines; Ritalin and Xyrem to treat narcolepsy, the second to increase delta sleep in order to reduce the need for the first. And Zoloft, to which I suspect I am addicted and need less for major depression than because I cannot get off it without rebound depression and suicidality..


All in all, these seem to work fairly well, however. If I have relapses, mostly I have to live with them, and wait for them to burn themselves out, because I won't take any other meds to stop them, and because increasing any of these drugs only adds side effects without actually helping the psychosis.


If my readers have any further questions, feel free to comment and ask them in your comment. I will reply personally or in another post.




TTFN (tata or good bye for now)

35 comments:

Rossa Forbes said...

And they say that people who stop taking their medications lack "insight" into their condition. What a load of BS we are told. I appreciated your laying out the problem with each of the drugs. I think the best comparison for how effective the drugs are is with the fairy tale The Emperor's New Clothes. Certainly, my experience watching my son on various antipsychotics made me feel like I was the odd one out. I could never see improvement on some drugs when the doctors "clearly saw it", and when I thought I saw something that looked like improvement on a different drug, the doctors didn't see it. Made me distrust the whole lot of them (doctors and meds!) John McCarthy of Mad Pride Ireland said this very apt thing about the drugs: "The king was wearing no clothes and I bought his suit!" I bought a couple, too.

Anonymous said...

I feel very hopeless after reading this. I started off on xanax.. Then klonopin and lexapro, then lamictal geodon klonopin and abilify. All did nothing for me after many trials of different milligrams. I tried pristiq but do not have enough $ for the copay. I'm on lithium and klonopin now and my doctor just added latuda. I am only 17 and feel that every option Is a lost cause. I haven't taken the latuda yet but need to start. Maybe it'll help but I don't have schizophrenia and those aren't even all the medicines my doctor has put me on. I feel like she doesn't care sahe just hands me whatever I look like I need. I experienced the opposite on all those medicines. Geodon made me sweat like a pig and I felt like my brain was on fire. And thru all I became overly skinny. Don't know what to do..

Pamela Spiro Wagner said...

This comment is for Anonymous. If you do not have schizophrenia, why is your doctor putting you on antipsychotic drugs? Do you know that research (See ANATOMY OF AN EPIDEMIC by Robert Whitaker) suggests that these drugs often CAUSE more problems, cause more mental illness, than they actually resolve? Antidepressants can CAUSE bipolar illness. Antipsychotics cause any number of serious physical conditions that may severely shorten your lifespan. I do not know what your problems are, but I would suggest that at age 17 you should NOT jump into taking ANY meds immediately, esp if you do not have schizophrenia. You are so young, you should NOT be starting these powerful meds at an age when adolescent feelings may be responsible for what you are going through. You need talk therapy first of all, and to give yourself some time to figure out what is going on. I no longer trust medications to be the solution, not even for myself. In fact, my doctor and I are slowly working to get me off of EVERYTHING...if I can. If I can. I do not know whether this will be possible, but I do want the chance to try. So we are going extremely slowly and reducing my meds one by one, almost milligram by milligram.

Please do not feel that you need to keep the doctor you have just because...You can choose your doctor and can leave one if you do not believe you are being treated properly. I think teenagers should NOT be medicated up the wazoo, I believe that teenagers need time to grow up and feel their feelings in a safe environment and with safe people...But I have said enough. Likely everyone else will counsel you the opposite way. All I can say is: NONE of the drugs you mention are harmless, and many can be absolutely devastating. Even deadly. Unless you absolutely must take them, why do so???

Melissa said...

Hi, how long did it take for the color to come back into your world after stopping Latuda? I need to feel again. They trialed me on it for my recent diagnosis of Bipolar (possibly Schizoaffective) and I had the same experience. Thank you for posting this so I knew I was not the only one. At first it was just right after I took the med at night. I would sleep it off and be fine enough the next day, or so I thought. Otherwise, no problems. Then it gradually, but still quickly got worse. I also started getting really shaky and if I felt anything at all it was depression/anxiety/antisocial stuff. At first this made me cry because it was so strange and uncomfortable. Now I'm not even able to get upset really, but am disturbed to say the least. I thought it this was "normal" then I'd rather be "crazy". I have been on it about a month, but am stopping tonight after reducing the dose a few days to what is normally the lowest prescription ... no avail other than being a bit less shaky. I talked this over with my doc first, trying to be a good and patient patient.

Melissa said...

My brother is also schizophrenic and his first hospitalization was worse than mine, though we had a lot of similarities, including physical symptoms that went along with the delusions, paranoia, and psychosis. Anyway, I have typed and retyped tons to you as if you were my therapist, and then deleted. I wish you the best with your battle and med reduction hopes! I sincerely hope this apathy reverses. Somehow music and things do not elicit a reaction or touch me at all like the did, but having the background noise helps. I should probably keep the music on all the time. Maybe it can wake up something in there, though so far the triggers I used to have are gone from everything ... even music. It is terrible to be this way. If this is normal, and I sincerely doubt it is, I would almost rather be crazy as long as I am not dangerous to others.

Pamela Spiro Wagner said...

Melissa, IN Whitaker's ANATOMY of AN EPIDEMIC, he warns that coming off an antipsychotic drug too quickly can often induce the psychotic symptoms that the drug is designed to treat, whether or not they would have been there or not if the drug were withdrawn slowly. So my advice is to stop it very very slowly, despite your desperation to feel something, ANYthing. I know how desperate you must feel, and how great the temptation is to drop it to nothing quickly. But you might be courting disaster...You really might. Dunno how much you were taking, nor do I remember the usual doses of the drug at a therapeutic level, but if it is in the 10s' say 20-80 mg then I wouldn't go more than -5mg a week or two. And if in the 100s of mg then no more than -25mg or less every week. THat is how slowly we are reducing the Zoloft, trust me, just in order to avoid rebound depression. I think also that if you do qithdraw the drug very very slowly, you will also see a concomitant increase in your feelings as the drug is lowered. SO that when you are finally at 0mg you may have 0 symptoms (one could hope) AND also feel very good at the same time.

Note this is not to say that I endorse what you doing. I am not your therapist or doctor and cannot possibly give you medical advice. I am only telling you the safety precautions I know about and the ones that simply make sense to me.

Pamela Spiro Wagner said...

Dear Melissa,

More to say, which is this: I have decided that for now I really do benefit from Abilify and Geodon, and that any side effects I experience are instead of harmful are clearly helpful. I have much better concentration and 'stick to it" abilities. I finish projects, and am not completely scattered in conversation or in my working at art and writing. I feel better too in general. It may be that I will go off them in the future, but for now as I am under a huge amount of stress I will continue to take them as I tolerate them very well, and see no great NEED to stop them.

Melissa said...

Pam, thanks for your helpful reply. I will never misconstrue your advice as that of a doctor. I was just interested since you had such a similar experience on Latuda and are on Abilify like my brother. I'm so lost on what to do ... to medicate or not ... then I think about my episode. In some ways it wasn't a bad one but thinking about how far off the norm it still was and how I also had some physical symptoms, too ... definitely gives me pause for thought. Could I talk myself through the next time to avoid some pitfalls? Will it be worse next time? Will there even be a next time? If so, how often. I have always leaned more towards the depressed to normal range. This was my first manic episode. Will I have another such episode or not? Obviously we can't predict and right now I am hyperparanoid about it. They told me not to be alone this weekend or at least have someone ready to answer the phone. I know the one time when my brother went off his meds it became very obvious very quickly from what I heard. Looking back I think I must have already had low dopamine issues, probably for well over a decade and maybe my whole life, and then this just blocked it all up. I am not sure we did the right thing on stopping it soon, either, though I wasn't on it terribly long so hopefully that makes a difference. I think she just wanted to wash it out to make the way to try something else or see if it was actually the med vs depression. They seem to be leaning towards antidepressant/mood stabilizer combo as the next try. She said to take St. John's Wort to help it leave my system, and not drink any grape fruit juice since it is one of those drugs that is increased in strength that way. I started at 40 mg which is the normal starting point. If you do well on it, they often move you right to 80 mg. It is never dosed higher than 120 mg as that is about the cutoff for side effects outweighing benefits. It is so new and expensive. It only comes in those increments and the sample pills do not split all that well. Desperation to escape anhedonia was definitely a factor. For many years I have had trouble finding motivation for my hobbies or getting tasks completed. This Latuda trial was far beyond that, though. I could watch a movie and have absolutely no reaction to it. I was getting really spacey, too. This is scary and I am new to it. Thanks for sharing so much!

Melissa said...

What are your side effects on Abilify? I naturally shake a bit anyway and my family seems to have that sort of false Parkinson's. After the extreme shakiness and muscle rigidity/aches on Latuda, I am reluctant to try something else that is likely to do the same.

Pamela Spiro Wagner said...

Dear Melissa,

I dunno about Abilify if you are worried about a MANIC episode. It is very activatingm one, and two, without taking Geodon with it, I would NEVER ever take it again as it makes me very very irritable and angry without the Geodon to temper it. Most people I know with any tendency towards a mood disorder find Abilify problematic, especially because most psychiatrists insist that one antipsychotic drug is enough to cover all bases and will not consider the prescribing of 2. Luckily my doctor was a forward thinker and decided that instead of taking me off Abilify a second time, she would try adding Geodon. And lo and behold, it not only cleared up my anhedonia and imparted a huge amount of stamina and all that, but it cut down all the irritability etc that I had been experiencing on the Abilify alone. Now, if your doctor would try the two, perhaps it might be worth a trial, but I would worry that a manic episode might be triggered. I just do not know enough about the drug to recommend it, though I have sometimes been diagnosed with schizo-affective, bipolar type, and no one has tried to stop me from taking Abilify...SO you could look into it. But I really would counsel you never to take it as your sole antipsychotic. What is more, I found that no other antipsychotic drug when combined worked anywhere near as effectively as Geodon. But remember we are all different and what works for me might be a bust for you.

Good luck and best wishes! Feel free to write and let me know how things are going at any time.

Melissa said...

The more I read up on all this and my symptoms, and the fact that it should be almost out of my system, I think it may be drug-induced Parkinsonism. I can't easily make facial expressions without thinking about it. Food tasted better today and I seemed to smell more, and I didn't shake as bad, so hopefully in my case it will reverse with dopamine agonists and time. It's kind of awkward to fake smiles when you have to think first about controlling your facial muscles ... and fake laughs I haven't mastered yet. Thanks again for this blog. I may have fought through trying it longer and made things worse! Still the drugs to reverse the problems may make me hallucinate. Oh ... what ... fun. I was never one to drink or drug myself and yet I still manage to go trippy all on my own!

Melissa said...

Thanks! I wonder if Abilify would be too strong (and expensive) like Latuda or the right balance with something else. I don't think I'll try it yet, but I am trying to learn before I am offered the next options. My brother is schizo/bipolar/OCD and I have a similar, but so far weaker flavor of that same mix I think. He uses Abilify with Luvox and does well. Want to say Geodon wasn't his friend, but we are all indeed different. OCD I eventually got mind-over-matter with after reading an article at age 12 and realizing I had it. Eventually I stopped any truly distressing aspects. In fact for a while I just channeled into making my projects and studies that much better rather than excessive hand-washing and lock-checking. OCD still kicks up now and then under stress, but never like it was if I just pause and ask if I'm being reasonable or not.

Melissa said...

On Latuda or shortly after stopping it do you ever remember not being able to laugh or smile? It's like my involuntary reactions to normal stimuli and sense of humor are totally gone. Food is tasting a bit better after getting off the stuff, but I have to be eating it to get anything out of it. I can't really anticipate it tasting good and "want" it or anything else.

Pamela Spiro Wagner said...

Hi Melissa,

I was only on Latuda twice, and then for less than 2 weeks, so I really cannot say anything at all about the sorts of side effects that you are experiencing However, if they are new, I expect that they will go away in time. Just do not panic. I would give them at least as much time to dissipate as you were taking the drug...And then I might go back to the doc and tell her that something is wrong, if the effects have not yet gone away (ie in a month). But I wager that they will have.

Abilify and Luvox? Well then no one must be worried about tipping your brother into man ia much, it seems to me. Otherwise I cannot understand the liberal use of an antidepressant AND a very activating antipsycotic! But there you have it. as you say he is doing well. Good for him. We are indeed all different!

Take a look at Anatomy of an Epidemic sometime, it is truly an eyeopener vis a vis the issue of medication. If I were not nearly 60 and with a life history of medication behind me, I would definitely want to find a way to come off them. I still do. But I am not so much needing to as I used to be so long as I have good periods of functioning well on them. And why rock the boat at this point?

Anyhow good luck and best wishes to you. If ever you feel like it, check out my other blog, in which I am much more active and where you can read more up to date posts, at http://wagblog.wordpress.com/

Thanks again,

Pam W

Melissa said...

Thanks again and I am afraid you are right, but here we go. All I have been able to feel and process if anything is horrible anxiety, frustration, worry, etc. Have lost the ability to cry even and I so wish I could get the emotional release. She wants to try Abilify for various reasons, starting lowish. I am ready to give up with the anhedonia and lack of real emotions, but hopefully I am enough like you and my brother that it'll work out OK and not send me into a mania. Also going to crank up the Lithium again for stabilization. Every moment is frustrating and I haven't been able to sleep without Ambien, which isn't working so well right now so I am getting less of a break from it ... tired but unable to take a nap unmedicated. She was going to give me a script for Trazadone for sleep on top of the Ambien since lack of sleep can trigger mania, but somehow I managed to make it home before I realized I didn't have it. :/ I take my first dose of Abilify in the morning. She claims she's had luck with it even in catatonic patients. Wish me luck ...

Melissa said...

She is going to have me come in every couple of days to check on things, too.

Pamela Spiro Wagner said...

HI Melissa,

As I have said, I love Abilify, but I must take Geodon with it or I cannot tolerate the irritability...Good luck and keep me posted. Hang in there in any event. THings will get better.

Pam

Melissa said...

Still feeling numb and dumb. She thinks because things didn't clear up off the Latuda, that it wasn't the medication ... but just a result of my bipolar illness. Who knows. Also, she thinks it was because we were trying to get me off lithium and maybe I wasn't on enough Latuda. Not sure. She's going to do Abilify for a bit, but may later move back to the lithium, risperdone, cogentin cocktail I was on originally. They're just trying to stabilize things after some time off from meds. This has been tough. I also just tried trazadone + ambien for sleep and while I did sleep a little longer I passed out last night with the only warning being some nausea. Blood pressure got too low and the timing would point to the traz so I'll take less next time. My digestive system went crazy and my husband had to help me get to the bathroom after picking me up off the floor.

Melissa said...

You are tough to have been living with this stuff for so long. I am glad the Abilify works for you and my brother. He actually gets to start trying to lower his dose soon. He reminded me meds are only part of it. We also have to work to focus on reality and sort some things out ourselves if we can. I know that's true. I'd just love to have my emotions and personality back.

Pamela Spiro Wagner said...

Melissa,

My (personal) sense is that if you had feelings and emotions initially, it is often the meds themselves that take them away, and that a longer wash-out period is better than immediately switching to another med...Still, one chooses one's own path. Nevertheless I would beware of doctors who are overly eager to medicate non-emergency situations without a wait and see attitude. After all, many things clear up with time, and unless there is some true desperation involved, ie suicidality, you might be well advised to TRY to sit some of this out and see what happens with a longer time off...rather than going right onto more meds. Multiple meds can have bad side effects and lithium in particular can have devastating consequences down the road. I hope you are aware of that. But remember I speak only as a consumer, not as a doctor, though I am highly educated and also experienced...Nevertheless, as I said, you have to choose your own path. Good luck whatever way you go!

Melissa said...

Yes, I know about lithium. It consumes my mind. I'm not in love with lithium. I really don't think it does anything for me, though we've had trouble getting the dosing right. I also don't want to have to get blood tests all the time. Lab work is expensive and lithium is picky about timing and all. She wants to try Lamictal because we might be able to get patient assist and there isn't so much lab work. I'm terrified of the rash, though she tells me if we go slow it's highly unlikely. My cousin has been on it for her rare seizure disorder I think, not that it means I will do well on it. If I don't get some kind of assistance and our finances don't look up, I will tell them they can treat me when I'm manic. Otherwise, no meds.

Melissa said...

Yes, some true desperation was involved, but they also were just not comfortable with a long washout. I have been reading and reading. There are no good options. They are working on getting ABS-103 to market, and I hope it works like they think it will ... and I hope it works for me, or they find something else. We really need better options.

wagblog said...

Hi Melissa,

How many episodes have you actually had? If only one, why are they so certain that you permanently need treatment? Are you certain that you want to be on meds for life? Why? ALL meds have side effects and no one can be certain that your present symptoms are not drug-related nor that any symptoms down the pike will not be drug-related if you start taking meds regularly from now on. My advice is, since you have such side effects, wait and see, don't jump into taking just anything and hope that you can tolerate the side effects. Quality of life is so very important. I assure you that were I not lucky enough that I experience virtually NO side effects but beneficial ones from my meds, I would not take them. I TAKE NOTHING that affects me badly. NOTHING. When occasionally I take PRN HAldol, I stop it the second I feel any bad side effects, which means within 2 days. And I take a tiny dose. But I am lucky, and I repeat that. I am very lucky. Most people do have side effects. I would NEVER tolerate taking a med ever again that made me feel like crap. What is the point? What is the point? You choose your poison I suppose, but I do not prefer to feel physically ill all of the time, just to avoid the possibility of intermittent psychosis. I am sorry, but that is just how I feel. Perhaps you feel differently. That is your choice. But I like living most of the time, and my LIFE is worth living to me well, and I will not take a drug that makes it only a half-life just to prevent a hospitalization some time down the road that may never happen.

What do you think? Am I crazy to think this way? IN any event, I forget how horrible psychosis is as soon as I am home and back in life...Which is a blessing in it s own way.

Good luck and feel free to write and tell me I am full of it...I might be, who knows. But we each have to choose our own path. And that is mine.

Yours,
Pam

Melissa said...

Pam, I think you are right, honestly. I wish you were on my medical team, but I know you aren't a doc. I have only had one manic episode and I'm 31. I have been dealing with this all my life. I had a few moments of hallucinations at other times, but I was VERY sick or a medication caused it. It wasn't just at random. If I can't get some financial help or feel stable and good enough to get a job, I can't afford meds anyway. Depression I have had plenty to varying degrees. Anhedonia is worse and I still feel it now some despite doing better. I may end up being wrong, but I still keep thinking maybe I should just have some meds on hand in case of emergency ... if it ever happens again. They said they have people that do that. My sister-in-law functions well and had an episode of some sort when she was younger and worked through it herself. She's on no meds and does fine. That doesn't mean I can, and mania is scary, but I still feel like I'm being punished for something that may never happen again if I am more careful and trust others to tell me when I'm off if I can't tell. I think the thought of life of dangerous medication is stressing me to the point I will have more problems. I'm obsessing over it and can't stop. It's an OCD/Hyperfocus thing. I also keep having these weird hot flashes ... at least once a month. I tested myself last night during one and my temperature is low to normal. I feel like I am on fire. It seems to go along with my moods some if I feel anything, and I am not sure if it's anxiety or if the tests just aren't picking up a thyroid problem. I need to see an endocrinologist. My Dr. in the hospital also asked if I'd ever had a brain scan, but he didn't order one for me. They all seemed shocked I came out of the mania so fast. Really, I'd been getting better before I went. It's just the physical symptoms finally got to me. I feel better in the morning before I take my meds. They aren't that horrible-feeling all the time, but you've read the books and you know what I'm worried about. I keep thinking if I'd just taken better care of myself I'd have been OK. My doc says not to think that, and it would have happened some time anyway. Otherwise I try to keep using it as a lesson that I need to take care of myself. Speaking of which, how did you lose all that weight? I am trying to take better care of myself, the weight has been awfully stubborn about going up again, just when I thought I was making a dent in it.

Thanks again! You're a gem.
Melissa

Pamela Spiro Wagner said...

Dear Melissa,

What do you do all day, if you don't work? Do you do anything you might enjoy? Do you get out of the house if you do not or cannot work? Have you taken a Myers Briggs test to find out what sorts of things your personality lends itself to, in case you do not actually know? I am wondering if you even know what you might want to do...The docs tend to medicalize EVERYTHING. But your comment about not taking care of yourself says a lot. If you were not sleeping enough, that may well have triggered a manic episode that would NOT have happened otherwise. Also, taking antidepressants can trigger manic episodes and CAUSE mania, not uncover bipolar illness that was always there...It is really important to get 7-8 hours sleep, not a great deal more or less. As for eating properly, DO NOT NOT NOT junk food, I cannot stress that enough. I never ever eat junk food, i cannot stand the way it makes me feel. If I eat a plate of french fries when out at a restaurant, one, that is ALL i eat, and two, I do so once or twice a year, that is it. Otherwise I eat whole foods and veggies and fruit almost exclusively. WHy? Because they taste good and I love them, period. I would go crazy if I had to eat white breads and pasta and greasy oily packaged foods. It is so easy to eat healthily when you taste real food and get full for the first time on vegetables and and it sticks to your ribs.

It doesn't take very long to pack a casserole dish full of raw vegetables cut up, then add a little water and cover and microwave for a while or bake for 40 minutes,,,But that is all it takes to make a great dish. Add some rice to the liquid and cook again for 20 minutes, and you have a complete meal.... (to be continued)

Pamela Spiro Wagner said...

Continuing:

Maybe in fact, you can keep a relapse from happening. Who knows, but worrying about it won't help anything. Anxiety could be worsening everything. You need to STOP looking at your symptoms, stop thinking about symptoms, stop talking about symptoms and get back into life if it is still possible...and it is always possible. STOP asking your docs what is wrong with you. Find out what is right with you! Look at the positive things in your life and emphasize them. A doctor is trained to look for illness. THat is how she makes her living! If they couldn't call you ill, they couldn't take your money, remember that! But if you are only 31, do you really want to stay ill and in their clutches for the REST OF YOUR LIFE? You are so young, you have so many years ahead of you. You don't need a future of institutions and medications if you can possibly avoid it. Dump some of those docs and tell them you will see them if and when you NEED them. Meanwhile, find some friends, and ask them how they cope, how they work, watch how they live and enjoy life. You can do it. Find a way to find a life that is YOURS and yours alone. You are a unique person. Just because your brother has schizophrenia doesn't condemn you to the same problem, or even to life-long bipolar. If it happens it happens but NO ONE has the right to condemn you to life-long anything! Remember that. Find your bliss, as Joseph Campbell famously said, Live your life. It is the only one you will have, at least so far as I know.

Keep writing me if you want to, let me know how things are going.

Pam

PS THe weight thing is very hard, esp once you have it on you. All I can say is go the whole foods, no fat way if you can, and completely cut out junk food and all WHITE food. It is amazing what that can do both for your health and your waist line. It also improves mood and some "symptoms"...Don't worry about "protein" we get way too much of it as it is, and a good vegan or vegetarian whole foods diet still is full of amino acids, the building blocks of protein, so your body will build protein from those no matter what. (Read "Diet for a Small Planet" -- it is a terrific book that talks about this and has some great recipes too)

Melissa said...

Pam,
Thanks! What do I do to "live" and in my spare time when I'm not bothering you? Good question because right now I am not feeling that I am doing that much. Ya know, I could write lots, but I keep losing my posts. Realistically, I still haven't recovered my abilities to enjoy things or appreciate beauty the way I did. I am in a really beautiful area, too, that I have loved since I moved here. The bad thoughts don't just nag, they scream, louder than anything else I try to think about or do. I still try mind you. My creative juices are no longer flowing. Wish I could get into art like before all this ever started (when I was much younger honestly). I like outdoor stuff like hobby farming, but most of the day it's too bright and hot considering the meds I'm on. I used to like exercising, but now I walk/jog and other things more for my health. My diet's not perfect, but it's definitely decent and I usually eat less now. I have lost some weight, but seems like I will lose it and it jumps up despite my not really changing anything. Oh well. Right now I am more concerned with sanity than weight. Still don't want to be fat, though, as I don't think it's helping matters.

Melissa said...

PS - Since all this, I have also noticed I will jerk in a weird way pretty often. It's not the chills on the spine type of jerk. It's just a weird random jerk. I'd almost describe it as maybe a light seizure??? It's another reason I don't sleep well. I keep forgetting to mention it, but not sure they'd even say anything.

Pamela Spiro Wagner said...

Melissa,

ALL writing counts, even these notes to me, at least that is my motto. If you are losing posts, write them out in a word processing program and save them first. Then try to post them. That way you won't permanently lose them if they don't post the first time. I know how terribly frustrating that is. (By the way, if you prefer, we could correspond privately by email, if you would like. Just go to Wagblog.wordpress.com and to the Contact me page. Otherwise, continue to write me here, I do not mind.

What meds are you on now anyway? Have you considered that these jerks are side effects? It seems probable to me that they are. They are definitely NOT part of depression or schizoaffective or bipolar and I would not trust ANY doctor who told you they were. Have you ever had a real NON-psychiatric medical work-up just to relieve your worries about medical problems, and also to rule out medical causes for your psychiatric issues? Also, perhaps you are experiencing ALL these problems BECAUSE of your meds??? It is entirely possible. A good second opinion might be warranted as well, from someone completely separate and not connected to your present doctors. NOT recommended by them either...

As I keep saying, I am not a psychiatrist, but I am acutely aware that these days psychiatrists tend to put people on lifetime meds even after one BRIEF episode, and you yourself said that it was brief and that it ended surprisingly quickly, surprising even them. Are you even certain that it was medication that helped or maybe just time? Perhaps your own system overcame the mania? That is possible too. Were you not sleeping at the time? If not, that could have brought on mania, and then a good night's sleep for a while would have "cured" it...Or if your physical problems were resolved the psychiatric issues could have resolved quickly too...

I really urge you to consider these things. And to think about the value of being or more to the point NOT allowing the doctors or the medications to make you a career mental patient. It really is critically important at age 31 to find yourself, your life and your path. More important than ANYTHING else at this point. You named a few things that you enjoy, and then you know what you did? You told me that you were unable to do them BECAUSE OF SIDE EFFECTS OF THE MEDS! Why do you tolerate meds that 1) do not seem to be helping you a great deal, 2) prevent you from actually doing the things that you once enjoyed or at least from finding out whether you can still enjoy them?

THe pleasures are still there. The talents and interests are still there. But the meds LOWER dopamine, the rewards neurotransmitter, or at least that is the theory. So i keep wondering why anyone expects you to feel better or to have ANY interest in anything (if the complaint is anhedonia) when they are lowering your dopamine levels. Now I know it is more complicated than that, but still, this is still using a shotgun approach not a surgical laser in directing treatment. (Not that ANYONE actually knows what levels of neurotransmitters are normal, nor that such "imbalances" are really the cause of "mental illness" at all!)

That said, I also will reiterate that I believe Geodon and Abilify are helpful to me. It could also be that I would do fine without them. I do not know. I really do not know. I believe I need them, I believe it. So I do take them. Why? Because, and ONLY because I experience no bad side effects from them that I know of and I believe they help. (Possibly they increase my appetite, but I take topomax and Xyrem, which seem to balance this out a bit...in any event I have not had too much problem with my appetite, though it remains a concern...). (to be continued)

Pamela Spiro Wagner said...

(continued...

As long as I FEEL that they assist me in writing and doing art, I will take them, but as soon as I feel that they hinder me in any way, out the window they go!

Note that my psychiatrist has no problem with helpful "polypharmacy" so I also take Zoloft, which I think is wholly unnecessary but which I have trouble stopping except extremely slowly ( we are lowering it by 12.5mg a month . I am now taking 75mg down from 125mg). I am also on Lamictal, largely for olfactory hallucinations (temporal lobe epilepsy), topomax for Migraine prevention, and some Ritalin and Xyrem for narcolepsy. Xyrem regularizes my sleep so I need much less Ritalin to stay awake than I ever have, Hurrah!

Keep writing Melissa, if it helps you and gives you some feeling of accomplishment. THat's no problem for me...We can only do our best each day, and if writing a comment here is your best and makes you feel good, well, Bravo for that! Remember, ALL WRITING COUNTS! Many the time all I did in the past was write one letter, or a journal entry but I made sure I let it count as an accomplishment for the day. Otherwise I would have driven myself into the grave for lack of meaning in my life.

Pamela Spiro Wagner said...

It could indeed be a kind of seizure, induced by the meds, a myoclonal jerk...I would not tolerate it myself. very unpleasant, and the meds definitely lower the seizure threshold. THe docs would likely just add an antiseizure med to your cocktail rather than take you off the meds you are on...so more side effects to deal with! (Lamictal is an antiseizure med...) But again, why take a drug that isn't helping you feel a huge amount better to begin with? I know, they will say most drugs don't make you feel hugely better...but say what? If an antibiotic didn't cure my infection completely I would say, what use is it? I want to get better, not just limp along! Since they don't know what a psychiatric illness is, nor what causes it, they cannot even treat it well, let alone promise any sort of recovery...It is all such a load of crap, frankly, and I would not take any drugs at all, if I thought I could get away with it....

Melissa said...

Pam, I am not sure if I can or can't get away with not taking drugs. Again, I am glad you have found what works for you. I know it took a while, too. I am getting low on options, though, from the sound of it. I guess if nothing works, I can always go off the meds. They've had some that did that, though I think most had another episode and came back.

Yes, I think these are myoclonic jerks. I used to get them occasionally, but they seem to happen more when I'm down. I used to just get them while trying to sleep or while half asleep in the morning. Now I have them while awake sometimes, too. I wonder if the anxiety is causing them more ... or if something is up with my system causing both. She's thinking of moving me to Lamictal anyway. Some people theorize that many bipolar people are really having tiny seizures all over the brain, and that's why the seizure meds help. As you said, though, nobody knows. The jerks aren't that horrible, just annoying when they won't let me sleep just as I'm about to get there. I also have something where its like my skin is on fire, but my temp is like 96-99 any time I take it, usually 97. I also do not sweat despite feeling very hot. I PMed you on your yahoo, so check your spam box.

Melissa said...

Your olfactory hallucinations comment reminded me. I kept smelling natural gas in and around my home. It can make me quite sick and I wonder if it was a hallucination or if it helped trigger the mania or made it worse. Nobody else seemed to smell it, but I know my husband had been working on our gas dryer around then, too. I don't think I would have smelled it outside, though, which I did. Also, there was a call from the gas company that said, "Sorry for the gas." I still don't know what that was about ... whether they were apologizing for a break or if it was just part of the mania. I would have maybe journaled the mania if I'd known what was happening. It was a strange trip and I don't remember it as well now.

Rachel Smith said...

Dear Pamela and Melissa,
I have gotten so much out of reading this post, and in particular, all these comments! Thank you both for being so open here.

I found this blog after googling Pamela's name, which I did after finding the book "Divided Minds" on Amazon. Earlier today I read the sample of the Spiro sisters' book on my Kindle, and will order the print copy.

We are nearly the same age, Pamela. With my 60th birthday coming up in a few months, and my first great-grandchild now on the way, I am finally taking an in-depth look back at a part of my life that I have kept mostly hidden: in 1967 I was diagnosed with schizophrenia, and then committed by my mother to a state insane asylum, where I remained until I was 16.

I stopped all psychiatric meds and therapy when I left the institution in 1969, and have had almost no symptoms of psychosis since. But beginning at age 39, I have experienced numerous deep, sometimes suicidal depressions, along with frequently overwhelming attacks of anxiety. At around the age of 40 I was diagnosed with bipolar disorder and put on lithium, and then Depakote, etc., for a total of nearly 10 years. The biggest effect I noticed from the various “mood stabilizers” I was prescribed, was that I had no emotions whatsoever, very little energy, my thinking was confused, my memory was badly compromised, and I went from my normal slender size to approx. 30 overweight.

These unbecoming changes in me eventually led to my last, and most painful, divorce. This took place a little over 10 years ago, shortly before my 50th birthday. At that time, I was in so much emotional agony that I took my divorce settlement money and, instead of paying cash for a modest house as I'd intended to do, I checked myself into a renowned private psychiatric clinic. I paid cash, having lost both my medical insurance and my monthly support in the divorce. But I was happy to do it; that's how desperate I was for help! After a full battery of physical and psychological tests, I was diagnosed with chronic and severe Post Traumatic Stress Disorder, going back to my earliest childhood trauma memories. I was not found to be bipolar, nor to have any of the personality disorders. My psychiatrist, the head of the clinic, and the author or co-author of over 80 books, told me that I could never have been schizophrenic. I wanted to believe him, but deep down in my heart I have always known that I truly WAS schizophrenic between the ages of 14 to 16.

My life has been a struggle in many ways, leading to multiple failed marriages, and my 3 adult children, and their own children in turn, have all suffered greatly for it, as these learned "dysfunctions" seem to be handed down through the generations. This is why, on behalf of my unborn great-grandson, I am now embarking on a quest to learn all I can about my family's "curse," in hopes of finding some sort of understanding and, hopefully, a resolution that has so far eluded me, which I can write about in my own book, and pass down to my off-spring. At my age, with too many of my loved ones and acquaintances already gone from this world, a number of whom were younger than me when they passed, I want to tell my story, ALL of my story, before it is forever too late. My greatest fear is that I will take all my “secrets” with me to the grave.

I am looking forward to reading your book in its entirety, Pamela, and also reading more of your blogs. I see that your wordpress blog is more current, and I will go through the posts you have there, as well as read through your older posts here. I probably won't comment on most of them, but I just had to stop and comment about how much I have been helped from reading this in-depth comment thread. I don't feel so alone with my “crazies” anymore! Thank you!

Rachel

Pamela Spiro Wagner said...

Hi Rachel,

Wow, what a story. You certainly would have a lot to say to many people, including your children and grandchildren, and probably many others as well. If you feel like sharing any more with this blog's comment section or at Wagblog, please feel free to comment at any time. I -- and others I am certain -- would appreciate hearing from you. But if you prefer just to read, that is fine too. Thanks, by the way, for all the "likes" at Wagblog. Those never go unappreciated!

By the way, you can also read my very earliest blog posts -- from the early 2000s --at www.schizophrenia.com (look for wagblog there). That "wagblog" blog is inactive, alas, but the archives are still available. Ever since the site went back online, I've wanted to reactivate it, but cannot seem to get hold of anyone at the site to do so...


Anyhow, thanks a million for your lengthy comment, and good luck.

Pam