h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Hi JEllen!

I was just getting ready to have a bath and head off to bed, but I wanted to say hello and thank you for sending me your Cathedral. It was *so* gorgeous, and you are one hell of a talented artist.

I really enjoyed talking with you on Sunday, I hope you came away feeling a bit better, or at least less lonely. You know that I support your decision to try the Alify, and while I know I've not been around much and have been kind of lax in attention and supportiveness, I am going to be behind you and here for you. I'm grateful to have a good friend like you, and it makes me really happy that you might have found a med that will allow you to sleep more normally and focus better, espceially on your painting which means so very much you to. I'll be praying and will keep a candle lit for you.

Thanks PC! *waves*

I'm on for the first time in more than 24 hours and I have s**tloads of backlog that I won't be able to go thru at this time. But I did want to let you know I saw your post. I know I'd told you I would ask my friend who took Abilify what the outcome was. I was just talking to her and was intending to ask her about it again but she just told me that she just found a lump. and I was distracted. She no longer takes it but as I recall she found it helpful and never said anything about side effects.

JEllen, thanks for sending me the Cathedral, Rainbow Descending Staircase, and Pyramid of the Sun paintings! I love them all. The Hot Petals I've already seen, but it's worth seeing another time! Anyways keep it up.

I have a few things I'd like to say about medications and such, but right now it's a bit busy over here ... it's my dad's sixtieth birthday party! I'll write something as soon as I have time. Meanwhile good luck and I hope all goes well.

I won't actually be starting the Abilify for another month yet. I will definitely post here pretty often letting folks know how I am feeling. I don't think it will be practical keeping a scale though, because if I am doing poorly, I most likely will not be on the computer. When I get depressed, I get very very tired, and sleep most of the time. When I am manic, I "reference", which means that I think conversations, etc are about me when they are not. The only way to fight mania, besides the meds, is to try and cut down on the overstimulation. So when I am manic I try not to read anything or watch TV. But hopefully I won't have any mania at all, and I can keep on hooting like I usually do.

*kinda tonight* JEllen

I'm too.

I know this will be a long process going off one and on another so it maybe like not weighing yourself daily.
You know yourself best.

It is bound to be a bit of a roller coaster Ellen.
I am looking forward to it working so I can enjoy more of your artwork in the future

I did ask my friend about Abilify yesterday. She said the only side effect she noticed was some indigestion. She didn't stay on it for very long though. She'd gone on it to try to control compulsive thoughts and at first she thought it helped but the effect didn't seem to last. The thought the improvement was more likely due to a change in her situation. She went of it after a couple of months.

It is good you have family support while you are changing meds.

I'm sorry to hear the two of you are tonight. s for both of you!

Good to see you Abbi!

I'm sorry to hear that those photos in the news are triggering you. And sorry to hear your other doggie is not doing well - but you know, he couldn't have a more caring owner, so in that respect he is a lucky dog.

I've been reading Bels' entries tonight. He said something about fatigue that struck me as being so true of depression also -- I am going to have a read back over, and see if I can find that quote and post it here.

Hi Hellbound, good to see you too.

I have *some* family support for the med change, but *some* family opposition too! Even though I am an adult, I still feel like I am "being a bad girl" for going against parental wishes. Thank goodness I have a therapist and a shrink who are terrific, and behind me 100%.

Hello everyone, I never really knew the gentleman named Bels who was fighting cancer, but his death has obviously touched A LOT of people on h2g2, and I have been drawn into reading his entries. I was quite struck by his description of the FATIGUE felt during CHEMOTHERAPY - it sounds so similar to the type of fatigue I have from depression. I hope he won't mind my quoting him here:

>>Fatigue is the side effect that most people find the most difficult to cope with. It isn't just feeling sleepy, it's a sort of lethargy and weariness on both a physical and mental level, so that things are physically much more of an effort while at the same time your attention span is reduced and you can find it very hard to concentrate. Extra sleep doesn't necessarily help, and in any case you might not be able to get it so easily because of another possible side effect - insomnia!<<

You live with a parent, right? That would make it more difficult to do something they don't approve of. My parents have *pretty much* given up trying to get me to do things. Med changes for me have been very hard when I've been living alone. Prozac for instance, really disagreed with me. I shouldn't have been alone when I was having that reaction, but at the time I had no idea what was happening to me. I just thought it was me. It was scary to be alone and not understand what was going on with me chemically.

Yes, I live with both my parents. My mom is very ill with Parkinson's, so my Dad is very immersed in taking care of her, which is why he feels he can't support me if something goes wrong. Understandable. But I so understand what you mean, not wanting to go through a med change alone! I WISH I could just move in with my therapist for a few weeks, wouldn't that be terrific! At least having my parents here, if I get seriously whacked out, they will notice and alert my siblings.

JE

Off to bed.

Hmm. Sorry I didn't know about your mom. Sorry to hear about that. I was fortunate not to have any trouble going on my current medication (except GI problems but that's another story) How have other med changes been for you?

*stays up long enough to answer*

Previous med changes have always come about because of crisis. I had to get off lithium because it was affecting my thyroid gland. I had to get off tegretol because it made all my joints hurt. I had to get off seroquel because it made me cough uncontrollably. And I was put on Zyprexa during a hospital stay for mania. So in the past I have only changed medicines because I was forced to. No nice history of smooth transitions to fall back on, LOL!! I don't want to make too much of an issue of all this; it is just a medication change.

"it is just a medication change." right ,and it shouldn't be a big deal especially if you aren't in a crisis to begin with.

Having been used as rather a guinea pig myself by s; i am rather biased against psychotropic meds, & can't have them anyway now, it would wipe me out physically.

So, HAVE to cope, but i had bad stuff in the past with Prozac, so i'm glad you are getting off that. Also Xanax is made out to be "oochy-coochy dear little tranxy-wanxy" NOT SO! The combination of the two gets you off society's back, stops you complaining & in my case just kept all the (pretty justified) nonsense bottled up until it exploded big style.

Let's hope this one is the one that helps you, without any nasties. I think the test of a good psychotropic drug is if you feel YOU are trying to sort your life out, not that the drug is doing so. Maybe an illusion, maybe a dream, but better than sitting back zonked i hope.

*off to having self-medicated on *



zdt

Hello again everybody! Today I have a bit more time so I'll say a few things here and, I hope, give you a bit of support, Ellen.

First of all I think the support of your doctor matters most! The psychiatrist after all is the one who really knows about medications and their pros and cons.

I think you are totally justified in *wanting* to do even better. You have every right in the world to try something that could work better than what has worked fairly well up till now. The side effects you mention *are* bothersome. The ideal is to have the ability to have some sort of actual 'life' ... I mean, to be able to sleep well each night, wake up rested and with energy and feeling up to doing something useful that day, and without your mood or other sorts of sensations in your body, or uncontrollable thoughts in your head, preventing you from having a good and productive day.

That's not such an impossible ideal, is it? To have energy and alertness each day, *not* to be in physical or mental pain or distress, and each day to want to be able to do something fun, something interesting, something valuable. Like art! Being creative is a great thing ... I think our creativity is one of the important parts of our humanity. It's a great goal, wanting to be more energetic so as to be more creative. I share this goal with you! I certainly want to produce a heck of a lot more art than I actually do.

But I'm still struggling with this after many years. I've gone through a number of different medications: Largactil, Fluanxol, Seroquel and now Leponex. It's still a struggle to 'do' every day.

That stuff you quoted from Bels about the fatigue ... I'm certain I don't have it nearly as people who undergo chemotherapy for cancer ... but that is similar to how I experience it: a deep-into-the-bones kind of tiredness and weariness, also of the mind ... every second of every day feels like an enormous battle. In my case this turns into a metaphor that I experience when I dream, and *very* frequently ... where I have to move to some place, but every single step takes an incredible effort. My legs won't move ... it's like, every step of the way, I have to bend down and grab my legs with my arms and *pull* it forwards with all my strength and to have to do that on *every single step* ... or having to exert the absolute maximum force of will and mindpower to persuade my legs to move ... and having to do that for an entire journey-of-a-thousand-miles that I simply *have to* complete, and often with absolutely terrifying enemies at my back. It's like I'm trying to force my upstream against a river of heavy sludge. Or even worse ... as if I'm fighting a battle against everybody and everything in the world ... even worse, people (and things) that I don't *want* to fight against! But I hafta fight no matter how much I hate it.

But anyways, that is what 'fatigue' is to me. And the thing is, I know it *doesn't* have to be that way! I don't feel like that all the time. Thank Heavens there are many days that I feel OK and can get something done. But still, I don't like that sort of fatigue, when it hits me. And it does seem to have something to do with my medication. When I wasn't on medication, I didn't experience this sort of fatigue. In fact I was very 'manic' for almost the whole time! I could get by with very little sleep ... sometimes I went for a couple of days without sleeping. But in the process I became delusional and paranoid. I also hit occasional lows of deep terror, horror and misery. In fact I was often in states where I was simultaneously high and low! That may seem weird but it can happen in my case because in my own mind I'm not a single individual, a single person ... my 'personality' is in fact several different threads of awareness that are most of the time only loosely connected to each other. One 'thread' can be high while another 'thread' is low. Maybe this complicating factor is why I'm diagnosed as schizophrenic rather than bipolar ... because there aren't clearly-recognisable cycles of my entire person being high, or low.

You know, to me it seems there is a considerable overlap between different mental 'conditions'. Even though I am diagnosed as schizophrenic, my problem is much like bipolar disorder. And on the other end I have a friend who started out being considered to be bipolar, but he ended up with a diagnosis of schizophrenia. He also became very delusional at the end, hearing voices and thinking people were speaking about him.

Sometimes it seems to me that trying to deal with this sort of complex condition by using chemicals is like throwing rocks in random directions in an effort to hit an invisible enemy. But the medications are becoming more sophisticated. In my own case, I've found that the transitions to different medications become easier and that the newer medications *do* seem to work better than the older. These days the fatigue is the only major remaining problem with my current medicine. I don't suffer from insomnia, thank Heaven ... in fact I sleep about 10 hours each night ... but still I feel that deep fatigue sometime. But I'm fighting it and it's getting better. I am trying something new, just recently started ... a magnesium supplement, because magnesium supposedly works for fatigue and muscle pains (which I get as well). If this works I'll be very happy!

I've said this before but I think in my own case my medicine really *works* in the suppression of delusions, because it makes me sleep well each night. Getting some good, deep sleep each night seems to 'break' obsessive chains of thought in my case. My medication doesn't seem to interfere the *quality* of my sleep. I still dream a lot, and my sleep does seem to be quite restful. But anyways I still want to do even better ... I still want to feel less fatigue during the day. For now though I'm not changing medications ... just trying out the magnesium supplement.

Anyways I just want to say I hope that this transition is, for you, a step in the right direction. It could be! And emphasize that I think you are justified in wanting to try out this change. And pledge my support to you during the time of risk, if it is of any value to you!

I'm not too keen on meds myself, but that's merely because I have had very bad personal experiences with them in the past- lithium and Trazodone especially. I certainly can't compare myself and my own "conditions", which can be weathered decently without meds, to people like JEllen and Willem, who have medical conditions which require being properly treated, much like a diabetic needs insulin. I think it is a very brave actio to be able to be proactive and involved in one's treatment, and to be able to speak up and ask for soemthing different when it becomes necessary.

When the meds you are on are making it difficult to function, to sleep properly, or to do the things which enrich your life and make it enjoyable, then it is definitely time to consider switching meds. But that must surely be frightening, wondering what the side effects will be, changing the status quo. It's much easier to deal with familiar and predictable stuff, even if that stuff is undesirable. I'm proud of JEllen for wanting to take this step, and have been doing a bit of research into Abilify and what it is and does, so I will be better able to offer my support.

I, too, have a tendency to self-medicate with , which may or may not be good for me. I know I am sensitive to sulfites, so it's a bit of a gamble. And if it weren't for Xanax, I'd have had a nervous breakdown several weeks ago. I am terribly prone to anxiety and overwhelming fear and guilt when things I feel a part of don't go as they should, or as planned.

I also understand that fatigue which comes from deep within your body tissues, I get that myself with my fibro, too, Willem. Funny how the fatigue makes it impossible to sleep... which only serves to further exascerbate the pain! Argh! And the things I do to myself- like drinking diet soda and stuff when I know I am phenyketeneuric... So I actually have to really pay a lot of respect and admiration to people like JEllen who have the cojones to do what they need to do to take care of themselves in the best way they see possible.

JEllen, I will be thinking of you, praying for you, and watching as you keep us all posted once you shift yourself from your present meds to the Abilify. And if during the transition time, when you are coming off of your present meds, you feel scared or vulnerable, don't hesitate to ask me to call or IM or anything. It's what friends are for, and I am so very grateful for friends like you.

Wow, PC, you're actually reading up on Abilify? I'm touched! Most of what I have read about it is positive. I know you are so pressed for time, so I am pleased you were able to come by and post.

This weekend it the anniversary of my breakdown in 1993, so that is always kinda hard.


Hi Willem, and Terri, and everyone who has posted - it's great having your support.

One week to go, and I can start going down on the Prozac. (By the way, except for the insomnia, Prozac worked well for me. But I know some people do not react well to it.)

Willem, in bipolar terminology, being up and down at the same time is called "mixed state depression". My friend S is struggling with that right now.



JEllen