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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 26. This is the beginning of the thread.
Posted by jclint on November 30, 2005, at 17:03:36
Over the half year or so I have been experimenting with many different medicines. I have tried many types - 2 SSNRIs, 1 MAOI, 1 RIMA, 1 mood stabilizer, 1 benzo, 1 beta blocker... and 3 antipsychotics.
I was quite optomistic about the antipsychotics for a while. My first was Seroquel, then Zyprexa, then Amisulpride. And although I coped with them and lived with them, in hindsight...
*I can't believe anyone can lead a normal life while on them!*
Now I'm not saying that people who take them don't lead normal lives, or shouldn't, only that the HUGE way they affected me made it so hard to lead a normal life. If you are taking them, and living normally, hats off to you - you have more strength than I had!
Out of everything I've taken, Seroquel and Zyprexa have been by *far* the worst in terms of side effects. I've never, ever felt so drugged as on Seroquel. I hated the fact that my sleep patterns were dictated by my nightly pill taking - it meant I could never be flexible with my sleeping hours, which sucks big time for a young person. I went on holiday in the summer, and the flight back was at night - I took my pill late, an hour or so before take off. I've never battled so hard to stay awake in my life. I leant against the window resisting sleep, as the attendants wouldn't let me sleep until the seatbelts sign was off! Sounds funny thinking about it, but it was hell at the time. To put it the other way around - it was like trying to go to sleep after taking a years worth of speed - hopeless.
I generally slept for 12/14 hours a night, and this was after I became 'tolerant' to the sledgehammer sleepiness. I had sexual side effects, and huge daytime drowsiness as I could never get my 12/14 hrs sleep the drug made me need. So I switched...
...To Zyprexa. I was assured that Zyprexa wasn't as sedating as Seroquel. Great, I thought, Seroquel without the sleepiness! And yes, she was right: it wasn't as sedating... but I wasn't expecting the one huge mother of a replacement: eternal hunger. In hindsight, I really don't know which was worse, endless sedation or endless hunger. It was so inhibative. I would salivate at the thought of food. I'd get huge meals, with crisps and chocolate on the side. It made me LOVE food. When I got pizza, I got the family size one to myself - the 2-4 people one. I always finished it, and 30mins later, was checking the cupboards for something else to nibble at. I used to eat crisps all day. I developed an addiction to fruit gums, and at the office I worked at, bought and consumed about 4/5 packs daily. Every morning at the canteen I bought 8 pieces of toast. I would have got double that, but was too embarressed to be seen with that much food. The motivation for my work was food - I'd do 30 mins typing, then get a snack, 30 mins typing, ect. I stayed on Zyprexa fo r about 6 weeks I think, waiting for the hunger to stop, but it didn't. It was such a bittersweet nightmare: it inspired a passion for food, but made me eat about 4 times as much as I normally did, literally. And to add insult to injury, my tiredness was still waayyyy to high - not the same horse-tranquiliser-seroquel feeling, more general sleepiness. I used to treat myself to a movie after work, but never made it past half way. I had to keep moving or I'd fall asleep.
The most unusual side effect of both Seroquel and Zyprexa, and you may be surprised to hear this, was movement problems. Even on the low dose of Seroquel I took, after a few weeks I began noticing 'muscle twitches' throughout my body. They were like little spasms, which increased in severity and quantity the higher the dose I took. This worried me greatly. They sometimes happened in my face, and became visible - the eyelid spasm was especially worrying, as I'd heard about that as a symptom of TD. The only thing that made me think it *wasn't* TD is that the spasms were never in the same place. They were quite embarrassing at times. If I wore a short sleeved t-shirt, you could occasionally see the muscles in my arms spasming under my skin for a second or two. It was very, very scary. Naturally, my doc was skeptical about this, me being on the lowest dose of the safest atypical AP, after only a few weeks. I can't explain why it happened, but I can assure you, it did, and was very real. The same continued on Zyprexa. Only this time, I noticed other problems, like hand tremor. Now, 4 or so months post-APs, I still have some residual symptoms. They still scare me sometimes. The spasms have mostly gone, but my hand is not as steady as it was before APs. You know when you get your leg in a certain position when sitting down, on the ball of your foot, so that it tremors automatically? Like when you've had too much coffee? Well that has increased dramatically for me. It is embarrassing sometimes, as it can happen walking down stairs, or when sitting cross legged supporting a newspaper. Generally 'Parkinsonian' tpye problems. Touchwood, they are fading away slowly.
After realising there was no way I could possibly live like this, I dropped them all. My doc tried to switch me to Risperdal, but I slapped myself round the face before collecting the prescription - I can't function on antipsychotics. I never collected the Risperdal. I started lowest dose Amisulpride (which isn't like the other APs), which was much milder. The only problem there was complete sexual dysfunction - although that faded after some weeks. But ultimately, like the previous two, it didn't have any positive effects.
I don't mean to discourage anyone who's on antipsychotics, not discourage anyone who is interested in trying them. I would never imagine that my experience is the 'normal' response. But goodness, even if you Seroquel/Zyprexa takers have half as many side effects as I had, I salute you :) You are clearly more hardcore than me! Now, on Lamictal and Cymbalta, I can't ever imagine going back to those days. You guys on APs, good luck to you all, but I wont be joining you! :D
I realised I've blabbed on a bit, but I rarely talk about my med experiences on here, and wanted to tell you all about my strange and wonderful encounters. Now, I'll do what I could never do a few months back - its 11pm, time to enjoy a late night movie... and be up bright and early at 9!
Bye! John :)
Posted by jclint on November 30, 2005, at 17:22:07
In reply to Living on antipsychotics - a retrospective, posted by jclint on November 30, 2005, at 17:03:36
I should add that I realise many of you have no choice in taking APs. I feel lucky that I am not 'psychotic', and therefore do not need to be on APs - for those of you who do... are you as grumpy about the side effects as I am?
:)
Posted by willyee on November 30, 2005, at 18:41:56
In reply to Living on antipsychotics - a retrospective, posted by jclint on November 30, 2005, at 17:03:36
Great post........i tried seraqueal these past few days due to a postive post which was also a good one.
Well i just slept on and on and on and on for hrs,my brother is soooo mad at me cause i let the phone ring,i promised him i was gonna look at his chrashed pc and he even took off work early,now hell come here very P.O.D at me,also i feel so weak,my goodness i cant gain my strentgh back.
Im curious,u mentioned maoi,how are ur feelings towards those.?
Posted by med_empowered on November 30, 2005, at 19:57:34
In reply to Re: Living on antipsychotics - a retrospective, posted by willyee on November 30, 2005, at 18:41:56
i seriously dislike antipsychotics. I was on abilify for a while--which is supposed to represent a major breakthrough in antipsychotic therapy, possibly even a "3rd generation" antipsychotic and...I hated it. Ticks, tremors, dysphoria, general unhappiness...I really hope that treatment for schizophrenia moves away from the D2 blockade concept onto something that will actually work *with* the brain, instead of just manipulating it into an odd sort of "tranquility". (i took abilify for bipolar, btw)
Posted by jclint on November 30, 2005, at 20:54:01
In reply to Re: Living on antipsychotics - a retrospective, posted by willyee on November 30, 2005, at 18:41:56
Yes a lot of people *really really* like Seroquel, and Zyprexa. I guess, when it works, it really works for some people. I'd hate to put you off with my experience... the tiredness can reside after a while, but it never really did for me. But they were both just too hardcore for me. Like hitting my brain with a sledgehammer when it really needed some fine retweaking. My mate is on lowish dose Zyprexa however and seems to be having a much milder experience than I did - swings and roundabouts. At first APs sounded exciting, now I'm slightly angry at how reckless the drug companies are being, trying to get such hardcore drugs promoted for much 'milder' psych problems than psychosis - I think med_empowered pointed this view out before I started, and I know what he meant now. As I said, I'm still dealing with the effects some months after quitting. But I'm not bitter, it was worth a go.
You ask about MAOIs - hmm, I never really got far, I took nardil for about 6 weeks but got the fear and gave up. But I'd rather be on Nardil than an antipsychotic, anyday. The side effects weren't too bad, some sexual, not much else... didn't feel too different from normal ADs. Although I remember feeling less emotionally blunted than on Effexor and Cymbalta. I never ran into a problem with the restrictions - drank quite a bit, stuck to bottled beer and vodka, ate pizza from Domino's... there's not much that's really dangerous; if you've got willpower it would be very easy to live by. I just got lazy - I wasn't feeling the effects and wanted some strong cheddar! There are some excellent revised food charts that give up to date info about whats *really* dangerous, I would be able to send them had I not broken my harddrive! But I'm sure someone else has them. The drug restrictions are more inhibiting in some ways. You cant do most recreational drugs. Decongestants are out. Some painkillers too. Its just a hassle if you have a headache, or sinus problems like I do. But I'd definately not sway you away from MAOIs if you have a chance to get them, if you've failed some other things - I think I'd rather be on an MAOI than a TCA, side effects wise. I didn't feel drugged or tired. I'm afraid I didn't take it long enough to give you any real info about its effects - although most people who've tried it here say its an extremely potent AD, and effective for symptoms that other ADs don't work on, ie social anxiety, which was one of the things I was trying to treat. I don't know if it would have had an effect on me though, seeing as I've responded well to Lamictal - makes me wonder whether I needed an AD in the first place, or just a stabilizer - its not important though.
Take care, John :)
Posted by jclint on November 30, 2005, at 20:55:52
In reply to Re: Living on antipsychotics - a retrospective, posted by med_empowered on November 30, 2005, at 19:57:34
Posted by Phillipa on November 30, 2005, at 22:42:31
In reply to Re: Living on antipsychotics - a retrospective » willyee, posted by jclint on November 30, 2005, at 20:54:01
If you are psychotic they work. But as an antidepressant or antianxiety med they are the pits! Fondly, Phillipa
Posted by xbunny on December 1, 2005, at 7:44:36
In reply to Living on antipsychotics - a retrospective, posted by jclint on November 30, 2005, at 17:03:36
> *I can't believe anyone can lead a normal life while on them!*
>
> Now I'm not saying that people who take them don't lead normal lives, or shouldn't, only that the HUGE way they affected me made it so hard to lead a normal life. If you are taking them, and living normally, hats off to you - you have more strength than I had!I havent taken seroquel but I have taken zyprexa, amisulpride, risperdal, sulpride, thioridazine, chlorpromazine, stelazine and currently take flupenthixol and pericyazine.
Im sorry to hear you had such a bad time with antipsychotics I certainly agree that they arent for everyone and many people have severe side effects from them.
For me they are godsend. I guess I fall into that category of people who must take antipsychotics and I am quite happy to do so. For me the benefits far out weigh the down sides. I think I am very lucky in this regard however, I have an illness which responds best to antipsychotics and I can take antipsychotics without too much difficulty.
I'll take yer hat though ;-)
Buns
Posted by jclint on December 1, 2005, at 13:29:53
In reply to Re: Living on antipsychotics - a retrospective, posted by xbunny on December 1, 2005, at 7:44:36
I duly hand over my hat!
Yes, I imagine that if I had a great, life changing response to the APs, like you undoubtedly had, then I would complain rather less about the side effects - surely there would be no contest which I would prefer. But then again I think my response was far from typical. I am very glad that they work for you though. Good luck to you. :)
Posted by MichaelJr on December 1, 2005, at 22:56:01
In reply to Re: Living on antipsychotics - a retrospective, posted by jclint on December 1, 2005, at 13:29:53
I have mixed feelings on anti psychotics.
I have been on geodon for about a year. It has really helped my depression a lot of and I am more social on it.
But the side effects are pretty bad. It takes me a long time to wake up the the morning, sometimes close to 3 hours. My sleep schedule also has to be the same every night or else I feel like sh*t. And if I get less than 8 hours in a night, I am dead tired.
The worst part is the sexual side effects. It takes me forever to finish and sometimes I cant get aroused at all.
I do feel better on them so I am not sure what do to do. I am on winter break right now from school so I Think it might be a good chance for me to try and get off them. I was just so miserable before I started the drug that I am worried I will go back to that. So...feel a little better, or pretty much have a horrible sex life?
It is a very hard decision.
Posted by ed_uk on December 3, 2005, at 13:37:02
In reply to Re: Living on antipsychotics - a retrospective, posted by xbunny on December 1, 2005, at 7:44:36
Hi Buns
Are you still having the involuntary facial movements?
Kind regards
ed
Posted by xbunny on December 5, 2005, at 5:45:15
In reply to Re: Living on antipsychotics - a retrospective » xbunny, posted by ed_uk on December 3, 2005, at 13:37:02
Hiya Ed, how are you doing?
>
> Are you still having the involuntary facial movements?
>I think either they have lessened or Im not noticing them so much either way they are bothering me less. This whole TD thing has me a bit freaked though when Im at rest I have been noticing that my tongue seems to be moving on its own. Its worse at night when it makes a slight clicking noise because its compressing and releasing the spit at the top of my mouth. I dont know if these things are real or just because TD is playing on my mind, Im that kind of person if someone else has an itch I get one also but its not a real itch if you know what I mean. Overall I would say its probably not of much importantance I mean my arms arent flailing about or anything like that so I just need to put it out of my mind.
Seasonal greetings, Bunny
Posted by xbunny on December 5, 2005, at 6:00:38
In reply to Re: Living on antipsychotics - a retrospective » xbunny, posted by ed_uk on December 3, 2005, at 13:37:02
Me again, despite my waffling I realized I didnt actually answer your question!
> Are you still having the involuntary facial movements?
yes!
Buns
Posted by ed_uk on December 5, 2005, at 16:12:32
In reply to Re: Living on antipsychotics - a retrospective » ed_uk, posted by xbunny on December 5, 2005, at 5:45:15
Hi Bunny
Did you try a dose of procyclidine to see what effect it had on your movements?
Seasonal greetings :-)
Ed
Posted by xbunny on December 5, 2005, at 18:08:54
In reply to Re: Living on antipsychotics - a retrospective » xbunny, posted by ed_uk on December 5, 2005, at 16:12:32
Hiya Ed,
> Did you try a dose of procyclidine to see what effect it had on your movements?
It does seem to help some, I would say it reduces it about 50%, but Im kinda loath to start taking procyclidine regularly again. Its a weird drug it gives the feeling for several hours after I take that I have just stepped out of a warm bath. Its quite pleasurable but weird too I can certainly see how it might be a drug of abuse I find it very relaxing! For the month I took it the feeling didnt abate. So anyways Im kinda reluctant to take it again since my legs havent been vibrating anymore! Actually thinking about it maybe I will try taking some at night before bed maybe then it will stop my tongue waggling when Im trying to get off to sleep and the warm sensation will have worn off by morning, does that sound like a plan? What would be really neat would be something like procyclidine sustained release so you could take one dose but the initial spike wasnt so obvious.
Buns
Posted by GeishaGirl on December 5, 2005, at 22:43:05
In reply to Re: Living on antipsychotics - a retrospective, posted by xbunny on December 5, 2005, at 18:08:54
To me, the worst antipsychotic side-effects by far was from Clozaril. I especially hated the drooling.
Geisha Girl
Posted by GeishaGirl on December 5, 2005, at 22:49:48
In reply to Re: Living on antipsychotics - a retrospective, posted by xbunny on December 5, 2005, at 18:08:54
I understand that Vitamin E supplements (natural E, not synthetic) may help TD symptoms. It was presribed to me by my then psychiatrist for TD, but was unable to take it (my insurance wouldn't cover it.) Don't remember the suggested dosage.
Geisha Girl
> Hiya Ed,
>
> > Did you try a dose of procyclidine to see what effect it had on your movements?
>
> It does seem to help some, I would say it reduces it about 50%, but Im kinda loath to start taking procyclidine regularly again. Its a weird drug it gives the feeling for several hours after I take that I have just stepped out of a warm bath. Its quite pleasurable but weird too I can certainly see how it might be a drug of abuse I find it very relaxing! For the month I took it the feeling didnt abate. So anyways Im kinda reluctant to take it again since my legs havent been vibrating anymore! Actually thinking about it maybe I will try taking some at night before bed maybe then it will stop my tongue waggling when Im trying to get off to sleep and the warm sensation will have worn off by morning, does that sound like a plan? What would be really neat would be something like procyclidine sustained release so you could take one dose but the initial spike wasnt so obvious.
>
> Buns
Posted by xbunny on December 6, 2005, at 5:23:36
In reply to Re: Living on antipsychotics - a retrospective » xbunny, posted by GeishaGirl on December 5, 2005, at 22:49:48
Hiya
> I understand that Vitamin E supplements (natural E, not synthetic) may help TD symptoms. It was presribed to me by my then psychiatrist for TD, but was unable to take it (my insurance wouldn't cover it.) Don't remember the suggested dosage.
Ed suggested vitamin E in a previous thread too, I will have to do some research on it to find the dose and best supplement.
Buns
Posted by ed_uk on December 6, 2005, at 14:05:57
In reply to Re: Living on antipsychotics - a retrospective, posted by GeishaGirl on December 5, 2005, at 22:43:05
Hi
What was your experience with other antipsychotics?
Ed
Posted by ed_uk on December 6, 2005, at 14:24:41
In reply to Re: Living on antipsychotics - a retrospective, posted by xbunny on December 5, 2005, at 18:08:54
Hi Buns!
>Actually thinking about it maybe I will try taking some at night before bed maybe then it will stop my tongue waggling when Im trying to get off to sleep and the warm sensation will have worn off by morning, does that sound like a plan?
So procyclidine reduces the tongue waggling? If so, it sounds like a good plan to me :-)
>What would be really neat would be something like procyclidine sustained release so you could take one dose but the initial spike wasnt so obvious.
A long acting anticholinergic called benztropine (Cogentin) used to be available in the UK. The tablets were discontinued though - it's only available as an injection now. Procyclidine, orphenadrine (Disipal) and benzhexol (also called trihexyphenidyl) are the only anticholinergics still available as tablets.
Warm regards
Ed
Posted by GeishaGirl on December 6, 2005, at 20:32:48
In reply to Re: Living on antipsychotics - a retrospective » GeishaGirl, posted by ed_uk on December 6, 2005, at 14:05:57
Hi Ed,
Not very good ones. None of them did what I was told they would do (stop "hallucinations/ delusions").
I started taking Zyprexa about 3 months after it came out. The others I took were the older antipsychotics, with the exception of Risperadol. The one I was on the longest, with the exception of the Zyprexa, was Moban.
Had a really rough time. I so completely freaked on taking Resperadol that I was switched soon after taking it, mostly agitation/ speedy kind of stuff.
Across the board side-effects from the others: hypothyroidism, sleeping way too much (then later, when I had akathesia from it, I didn't sleep enough), constantly moving from the akathesia, feeling like I was coming out of from skin (so intense that I almost killed myself) from the akathesia, weight gain, couldn't focus or concentrate (couldn't read even simple things), memory loss, unable to complete thoughts/ sentences (would keep mentally searching for words I couldn't find), zoned-out "personality", loss of passion, loss of self, slight case of td, shaking/ trembling, dry mouth, blurry vision (had to get glasses ), constipation and hemorrhoids...I think there's more, but I think you get the picture.
I will add that I never took antipsychotics by themselves. After my first few months on meds, I was always on between 3 and 6 meds at a time. I was always at least taking one antidepressant and one mood stabilizer with it. Also, my understanding is that the hypothyroidism was caused by lithium. However, it was not able to reverse itself until I was off all meds. So, I feel like it must have influenced something someway.
However, I also need to add that most of the side-effects went away after I discontinued the antipsychotics altogether (at the time, Zyprexa).
The only ones that still stay with me are some of the brain damage side effects - problems with word retrieval and some cognitive processing and I can't read as fast. Also, I used to be able to learn from any learning style. This is now limited to a couple. My memory is not what it used to be. However, all of this had been slowly improving over the past three years.
My thyroid and eyesight has gone back to normal (no thyroid meds and am donating my glasses.) My td went away. I am really happy and grateful about this.
Sorry, long answer to a short question :0
Geisha Girl
> Hi
>
> What was your experience with other antipsychotics?
>
> Ed
Posted by yxibow on December 7, 2005, at 1:00:42
In reply to Re: Living on antipsychotics - a retrospective » xbunny, posted by ed_uk on December 6, 2005, at 14:24:41
> A long acting anticholinergic called benztropine (Cogentin) used to be available in the UK. The tablets were discontinued though - it's only available as an injection now. Procyclidine, orphenadrine (Disipal) and benzhexol (also called trihexyphenidyl) are the only anticholinergics still available as tablets.
>
> Warm regards
>
> EdIts unfortunate that Cogentin was discontinued although it is on the mind numbing side. Does (what I think works better in my opinion) Akineton (Biperiden) still exist -- it is an old line anticholinergic but without some of the heavily atropine conditions of the others. Its available here, in the US, by special order at pharmacies.
- J
Posted by denise1966 on December 7, 2005, at 15:30:35
In reply to Living on antipsychotics - a retrospective, posted by jclint on November 30, 2005, at 17:03:36
I take Zyprexa only now and again but it has been a life saver for me.
If I had to choose between depression/anxiety or wanting to eat all the time or depression/anxiety and muscle twitches, I'd go for the latter every time.
As far as I'm concerned there is nothing worse than depression and anxiety but then maybe I've not suffered enough to know.
Denise
Posted by jclint on December 7, 2005, at 19:11:07
In reply to Re: Living on antipsychotics - a retrospective, posted by denise1966 on December 7, 2005, at 15:30:35
I agree very much. But I didn't really get any effect from it, apart from maybe slight dampening of anxiety probably due to the sedation... but yes I imagine if I had had a huge improvement I wouldn't be complaining about such trivial side effects :)
Posted by denise1966 on December 18, 2005, at 13:13:59
In reply to Re: Living on antipsychotics - a retrospective » denise1966, posted by jclint on December 7, 2005, at 19:11:07
Hi jclint,
Sorry I just assumed that Zyprexa or any of the anti-psychotics had helped you. I hope you have found something that does help you??
Denise
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