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Dr. Bob is Robert Hsiung, MD,
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Posted by fenix on February 2, 2006, at 7:25:07
In reply to Re: Akathisia vs. Tardive dyskinesia » fenix, posted by ed_uk on January 30, 2006, at 12:08:58
> Hi Fenix
>
> Tell us about your akathisia. How long have you had it? Which medication was responsible? When did you stop the offending medication? Did you suffer from acute extra-pyramidal side effects when you were still taking the offending medication? What medication(s) are you on at the moment? Which meds have you tried for the akathisia so far?
>
> EdHi Ed, I would respond better but I am so worn and tired really so I will try my best to answer your questions.
1)I have had akathisia for 2 years, and have been diagnosed with Tardive Akathisia, the worst form of it. I have also not been on any psychiatric drugs for 2 years as well, ever since the TA happened, for you see, Tardive Akathisia lasts and lasts even when all causitive drugs have been stopped. Horrific pain.
2)The medication responsible was Geodon, I was also on other neuroleptics for three years or so before I got Tardive Akathisia, so Geodon was just another player in the long term effects these drugs were having on me. (I want to note here now that I was being treated for depression/anxiety, nothing psychotic in nature, and that I was also given Effexor on a number of occasions).
3)I was and still am suffering from extra-pyramidal side-effects. It was worse when I was on the causitive drug. Basically now, I tend to get twitchings mostly in the left leg once in a while and it happens every day.
4)The only medicine I am on now is clonazepam. We first tried propranolol but that didn't work, so we are now trying benzodiazepines (these are helping to an extent, albeit a small one, but still better than nothing).
Any other questions, feel free to ask. Thanks.
Posted by yxibow on February 2, 2006, at 12:13:02
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by fenix on February 2, 2006, at 7:25:07
You might try for a compassionate Prior Authorization from your insurance provider (I'm hoping you have insurance :/) or from Novartis (the current orphan drug manufacturer) for the atypical with the least D2, Clozaril. It costs $9,000 a year (when last checked -- costs are more for the testing than the drug I think) because they have to monitor you weekly for agranulocytosis (low white blood cell count in 2% of patients), but it has a) helped the worst schizophrenia cases and b) sometimes brought people out of Tardive conditions.
Your doctor would have to make a considerable letter/case for it but it might be an option.
If not trying another low on the totem pole atypical such as Seroquel or Zyprexa may and has caused a shift in things before in people.
Tidings
Jay
Posted by ed_uk on February 2, 2006, at 13:53:21
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by fenix on February 2, 2006, at 7:25:07
Hi Fenix
>I would respond better but I am so worn and tired
No problem :)
>Horrific pain
I can imagine. I've suffered severe neuroleptic-induced acute akathisia myself, it was awful. Thankfully it disappeared within 24 hours of stopping the antipsychotic......which I only took for a couple of days. Tardive akathisia must be absolutely dreadful.
>clonazepam....
So you've only tried propranolol and clonazepam?
The treatment of tardive akathisia is very poorly researched. There are many drugs you could try. A process of trial and error is ahead.
Regards
Ed
Posted by fenix on February 2, 2006, at 14:31:38
In reply to Re: Akathisia vs. Tardive dyskinesia » fenix, posted by yxibow on February 2, 2006, at 12:13:02
> You might try for a compassionate Prior Authorization from your insurance provider (I'm hoping you have insurance :/) or from Novartis (the current orphan drug manufacturer) for the atypical with the least D2, Clozaril. It costs $9,000 a year (when last checked -- costs are more for the testing than the drug I think) because they have to monitor you weekly for agranulocytosis (low white blood cell count in 2% of patients), but it has a) helped the worst schizophrenia cases and b) sometimes brought people out of Tardive conditions.
>
> Your doctor would have to make a considerable letter/case for it but it might be an option.
>
> If not trying another low on the totem pole atypical such as Seroquel or Zyprexa may and has caused a shift in things before in people.
>
> Tidings
>
> Jay
No way in hell am I going on SSRIs or neuroleptics again, they caused my pains, and I feel way better now without them. And... I am not schizo, never was, so... thanks for the post anyway.
Posted by fenix on February 2, 2006, at 14:34:15
In reply to Re: Akathisia vs. Tardive dyskinesia » fenix, posted by ed_uk on February 2, 2006, at 13:53:21
Yes... I wish there was more research done on this stuff. I talked to a doctor from Harvard University that did research on adverse drug side-effects from SSRIs, and in fact he wrote a book on it.
However, even he barely knows anything about Tardive Akathsisia.
Posted by yxibow on February 3, 2006, at 0:26:47
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by fenix on February 2, 2006, at 14:31:38
> No way in hell am I going on SSRIs or neuroleptics again, they caused my pains, and I feel way better now without them. And... I am not schizo, never was, so... thanks for the post anyway.It wasn't meant as an insult, I dont know your condition. Clozaril, which has some nasty but non TD side effects, is a treatment for Tardive conditions. That's all I was suggesting.
And yes, after you have exhausted other alternatives, there are numerous case reports where one neuroleptic has altered conditions completely. But I understand your reluctance definately. I can't imagine the pain, because I have experienced some of the worst akathisia on things like Compazine (not for schizophrenia.) It was just a suggestion.
Posted by fenix on February 3, 2006, at 3:52:07
In reply to Re: Akathisia vs. Tardive dyskinesia » fenix, posted by yxibow on February 3, 2006, at 0:26:47
Oh man, I had just typed this long post and then I closed the window by accident.
Basically I am just trying benzodiazepines and other things like resperine at the moment.
I am scared of neuroleptics, they hurt me.
Posted by yxibow on February 3, 2006, at 12:29:55
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by fenix on February 3, 2006, at 3:52:07
> Oh man, I had just typed this long post and then I closed the window by accident.
>
> Basically I am just trying benzodiazepines and other things like resperine at the moment.
>
> I am scared of neuroleptics, they hurt me.I understand. Reserpine is a neuroleptic, by the way, synthesized now from a natural Indian plant. Tetrabenazine, similar, is also a neuroleptic/dopamine depleter.
I know they hurt you alot and I am in no way advising you go down that road, but it is another last resort to these persistent disorders, especially clozaril, which to this date has nearly no provable TD caused directly by itself.
Posted by ed_uk on February 3, 2006, at 13:50:41
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by fenix on February 3, 2006, at 3:52:07
Hi Fenix
So what will you try next after clonazepam?
Some ideas.....
Clonidine
Biperiden
Cyproheptadine
GabapentinEd
Posted by Karla on February 3, 2006, at 23:22:06
In reply to 10mg Abilify.........Akathisia, posted by ace on January 29, 2006, at 9:34:11
I take 30 mg of abilify over last year. What is this Akathisia that you speak of? What are the symptoms? Thanks.
Posted by the kindling effect on February 8, 2006, at 12:49:42
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by fenix on February 3, 2006, at 3:52:07
Hi fenix,
Was diagnosed with TA about a year ago but a lot of difficulty with treatments(big surprise huh). Am in Canada but was told by movement disorer specialists(have seen 4 seperate movement neurologists here but none able to do on-going treatment) to go to US to seek treatment. You mentioned a doc a Harvard? studying/treating Tardive Akathisia. ANy info. you could pass along on docs would be immensly appreciated. You can Babblemail me or post.
Anyone else who knows a tardive specialist in the US please advise. 'Have heard the Wirshing's aren't active anymore?
THis is excruciatingly uncomfortable. Makes the disorders I was treating seem almost benign(although now untreated they obviously complicate things too).
I'd appreciate any help.
DAVE
Oh man, I had just typed this long post and then I closed the window by accident.
>
> Basically I am just trying benzodiazepines and other things like resperine at the moment.
>
> I am scared of neuroleptics, they hurt me.
Posted by the kindling effect on February 8, 2006, at 12:53:07
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by the kindling effect on February 8, 2006, at 12:49:42
,.....basicaly that or something like it was to be the title of above post. Not sure how to respond so person's name appears with those little arrows....
DAVE
Posted by ed_uk on February 8, 2006, at 13:25:03
In reply to ATTN: fenix., posted by the kindling effect on February 8, 2006, at 12:53:07
Hi Dave
I hope you don't mind me asking you the same questions I asked Fenix.......
Tell us about your akathisia. How long have you had it? Which medication was responsible? When did you stop the offending medication? Did you suffer from acute extra-pyramidal side effects when you were still taking the offending medication? What medication(s) are you on at the moment? Which meds have you tried for the akathisia so far?
Ed
Posted by the kindling effect on February 9, 2006, at 11:27:10
In reply to Re: Akathisia vs. Tardive dyskinesia » fenix, posted by yxibow on January 31, 2006, at 1:20:49
> > Akathisia is not short for tardive akathisia. Tardive akathisia is something different. Tardive is derived from the Latin word meaning late onset.
> >
> > Tardive akathisia differs from normal akathisia because it 1) lasts for a very long time (if not indefinitely) even when the drugs that caused it are stopped and 2) has a tendency to be extremely difficult to treat; drugs such as propranolol (which is very effective in temporary neuroleptic-induced akathisia, usually does nothing for tardive akathisia), benzodiazepines, opiates, dopamine depleters (such as reserpine), and divers other things have proven unsatisfactory results.
>
>
> You might look into wemove.org and other sites devoted to movement disorders. I can't discuss importation of drugs here, but people have imported Tetrabenazine (Nitoman in Canada) from Canada and England. It is considered a fast track orphan drug by the FDA currently. A company has filed a NDA recently to have it approved in the US for Huntingtons Chorea. It has been used in trials for TD in the same way reserpine has been used. It can cause pseudoparkinsonism, but one has to weight the benefits.
>
Depression and pseudoparkinsonism are the main two for Tetrabenazine. We have it here in Canada as you mentioned. Apparently it's not a nice drug if you already suffer depression ,anxiety etc. My rough understanding is reserpine is sort of irreversible DA depleter whereas tetrabenazine is reversible (think Moclobimide versus standard MAOIs perhaps). Dysphoria,anxiety,insomnia etc. are other side effects. This is my treatment option I've been given right now but I'm told I need to start in hospital due to possibility of becoming suicidal(more?) and due to side effects. I also believe you must request the drug from government under 'compassionate plea' request (something along those lines. I've been told I have mild chorea or (something that imitates it neurologists have differing opinions) but most say it is the akathisia when I'm under stress and staying still. Along with vatious tics. Huntington's isn't pretty o see. I've already been ruled out for Wilson's and Huntington's.
Nitoman.(always think of Bart Simpson; ie 'neat-o man!' 'not sure how it's supposed to help dysphoria when it can cause it. (rhetorical. No theories or suportive comments please.)
Posted by the kindling effect on February 9, 2006, at 11:59:26
In reply to Re: ATTN: fenix. » the kindling effect, posted by ed_uk on February 8, 2006, at 13:25:03
Hello Ed.
Very bizzare posting here. Have been watching (stalking sounds so unbearably creepy) this board for 5 years now and am very familar with the cases of many long time posters. Have learned a lot from here. Some of it really kept me going. Didn't post before because there were so few people who seemed to have similar symptoms. I kept coming back(this is heading way off on a tangent Ed; i tend to have a lot of verbal spewing now; be forewarned, often completely forget original topic)uummmm lost.
Anyways 40+ psychotropics over last five years. Dxs(which I consider from useless to dangerous if incorrect at times)have become a silly potpourri now. Originally I suppose dysthimia/MDD then anxiety showed up after a period on sertraline. This is going to become a medusa of an explanation.
Basically I've seen 2 or 3 people in 5 years on this board in a similar situation as I (similar causes as well) although my current situation is now further clouded by TA and other neurological dxs(tics(developed mostly on Seroquel/EFXR,) OCD apparently often go together.) Point- Marsha,4WD, is now in the same situation I was attempting to treat the last 5 years. Largest aggravating factor:time of day,same nearly every day. Morning intense,often fear terror drops to despair to dysphoria(anguish as the neuros call it, often unable to move) with energy building again towards evening but usually much better by some hours after darkness. THat's brief, spare you details. Past similarities with these other posters? Several years on SSRI alone(Prozac seems worst, I was on Zoloft) and often some intermittent C(believe you call it Charlie in UK) use with alcohol during that period;hence the kindling effect common in low dose sporadic users.Push it too far one time and don't recover from anxiety. become super-sensitive to SSRIs, including muscle stiffness(esp.Celexa),minor EPSs, anxiety,agitation and many psychotropics, try a plethora of mood stabilizers w/Ad, atypical APs /AD(my biggest help for a couple years) all generally at low dose because of strange(to psychiatrists) side effects....Every possible physical ailment, MRIs,SPECT, psych, neuro-psych testing
I think you asked my some straightforward questions I'm trying to cram 5 years of personal observations down your throat.
...will try again. Exit.
> Hi Dave
>
> I hope you don't mind me asking you the same questions I asked Fenix.......
>
> Tell us about your akathisia. How long have you had it? Which medication was responsible? When did you stop the offending medication? Did you suffer from acute extra-pyramidal side effects when you were still taking the offending medication? What medication(s) are you on at the moment? Which meds have you tried for the akathisia so far?
>
> Ed
>
Posted by the kindling effect on February 9, 2006, at 14:03:56
In reply to Re: ATTN: fenix. » the kindling effect, posted by ed_uk on February 8, 2006, at 13:25:03
> Hi Dave
>
> I hope you don't mind me asking you the same questions I asked Fenix.......
>
> Tell us about your akathisia.Indescribable.
It's probably easier if you ask someone more pointed questions like, where do you feel it, when, what makes it worse.What makes it better. Does walking/pacing help. You can really narrow it down quickly.And tehn even question based on the answers.
It can be difficult to concentrate with TA. I used to use the analogy of imagine you have to go to the bathroom really,really badly but there are 500 in front of you in line (que(sp?) for you) and your legs are clamped and you're squirming and a friend is trying to show you the details on a tacky new sweater they got....
that's not truly accurate though, that's probably a better description of anxiety. Anxiety doesn't make you want to jump out a window necessarily. And akathisia there's rarely an urge to urinate no matter how bad the 'anxiety'is. the squirming is accurate,as are at times mewling and crying, torso twists and stepping on the spot like a little kid.
I found the movement neuorlogists could quickly pinpoint if it was akathisia(Tardive or otherwise) they were dealing with or not with the correct questions. Some trademarks you can't get away from; and as you know several things can mimic akathisia.
TA; wha t a way to solve the first world's obesity epidemic.No matter how much you eat you keep losing weight! And if you exercise it only brings on excruciating akathisia in the following hours or next day.A lot of people with TA I would assume had previous psychiatric problems. This justs clouds the issues. Apparently there is a strong mental componement to TA as well. (was you Ed who felt a kind of bad ,insecure anxiety on Risperdal or a similar AP? That's part of it for me. Like you're a frightened,timid child? again it's difficult to explain but it's not your regular insecurity.
You really should differentiate between acute, chronic and Tardive akathisia. If recall correctly you yourself Ed have suffered a bout of acute akathisia. Tardive is the same but different. Basically, I'm sure you can understand that you likely couldn't survive a long-term attack of acute akathisia.
How long have you had it? Probably underlying since '99 or 2000. Tardive likely since....for 2 years maybe? Bad the last year. I have med/mood calendars since 2001. It's embarassing to be able to se the progression of it now. One neurologist sort of tracked his way along and just said "wow". Although they are always surprised at the low doses. In my opinion that's likely where the kindling effect/ revervse stimulant tolerance from past C/alcohol/ssri combo come in.
Which medication was responsible?Numerous. 5 years on sertraline. Had some akathisia(had no idea what it was), bruxism and broken back molar from jaw clencing.Pre- 2000 I couldn't have told you what the hell serotonin was. I felt good on the med and had a life so I ignored these things. Sporadic C use while bingeing alcohol on sertraline pre-2000. Dec.2000 first panic attack(what the hell was that!?!?) on-set of anxiety, akathisia from zoloft(still don't know what it is) put on high dose benzo (cloxazolam(sp.)-Brasilian) akathsia calms.Return to Canada, Can no longer tolerate sertraline,nor any other SSRI.Start lorazepam(until today)Tolerate low-dose EFXR up to 75mg. Eventually lowered to 18.75mg.due to side effects(dysphoria, akathisia(still didn't understand it) (special pharmacy in Toronto makes exact doses). Many other trials while on Efxr and before. Mood stabilizers horrible (mostly agitation). Hit on olanzapine with EFXR, doc insists on .625mg. to begin. Success. I insist on raising olanzapine (nope,drowsy, bad agitation, outburts)(Quick trial of Risperidone .25mg. after three days can't sleep due to aka., takes three days to wear off after stopping.Do well on Zyp./EFXR for nearly a year along with intermittent 100mg Wellbutrin (2x week?) but akathisia shows up again about 3 mos. in, throw more lorazepam on it. Switch to Seroquel 25mg, lower Efxr to 14mg. due to speedy chest, stiffness. Do well more or less (Daily flucuaions and mild dysphoria on/off entire 2001-present) second broken molar from jaw-clenching, more akathisia, begins showing up in daytime,along with mental akathisia(my term, I didn't realize it acually existed!)Add/Try several beta blockers, loraz creeps up a little more
Doc moves to B.C mess with meds(raise Seroquel to 50mg several times-can't sit still,tics,jaw clenching, sleep much worse after few days, lower dose again........f.f....hospitalized, psychiatrists diagnose everything nameable then chage their minds (they love that Bi-Polar as do some people on this board for a catch-all). Nix most dx's after getting me off meds and raising lorazepam. Just depression ,anxiety and something else they can't figure out. After over year of dizzying array and specialists 4 seperate movement neurologists dx TA plus, plus plus.(was stupidly still trying to get back on ADs etc. with a psychiatrist)When did you stop the offending medication?
see above.
Close to a year psychotropic free.Did you suffer from acute extra-pyramidal side effects when you were still taking the offending medication?
See above. Still have mild left side neck dystonia, lower back dystonia.
Problems are always more severe/ show up more on left side; weakness,facial twitches, my famous ankle dip, stiffness.What medication(s) are you on at the moment?
lorazepam 5 mgs. (told to go as high as ten), several attempts wit propranolol.hich meds have you tried for the akathisia so far?
For some reason clonazepam causes muscle tightness/stiffness, and insomnia in the past.Lorazepam is one of the few GABA meds I don't seem to have problems with. Gabapentin caused horrible insomnia and anxiety.Haven't tried Tetrabenazine or opiates.Was prescribed Nabilone by a doc but I filled the script and didn't take it and he changed his mind. It was a long shot.Pot never used to do anything but make me flat and sad.
-haven't tried Clozapine, surpringsly only one psych/neurologist suggested it.
-perhaps pergolide?(due to partial DA agonism/antgonism?)Clonidine worked physically somewhat(didn't stop daily fluctuation);my body lay flat for the first time in ages. pulled off it (it was a fairly low dose) because it made my sensitivity to background sounds and light much worse, and my hyper-vision worse, bit of an E-bay buying binge,very speedy mentally, freezing,BP up again(i know i know it's a BP med;also told I know have an 'autonomus system dysregulation',whatever) anxiety,chest pain(a constant mostly for 5 years which I learned to deal with. and anxiety is often a good thing-pay attention to how you look, mind actually worries/thinks about other things rather than wrapped up in this horrible inner turmoil/restless/impatient/vibrating/squirming feeling. don't know, I usually ignore side efxs for most part.
Apparently pulse-dosing your psychotropics (especially APs) can hasten/put you more a risk of contracting TD syndromes.
Apparently DA agonists can worsen TA in long run. Was on pramipexole a few times (totally killed the akathisia back in the Zyprexa days but couldn't handle the med).
Apparently beta-blockers are often of little use in TA. TA is not well understood but éxtremly difficult to treat(tired of reading/hearing this)
Apparently different cases may respond differrently to different treatments.Hands are freezing, gotta stop.OK Dr. Ed I'm up off the couch now, our time is up.
excuse the incoherrent mess. Makes H.S.T. look slow and poetic.DAVE
Posted by ed_uk on February 9, 2006, at 15:16:53
In reply to Re: TA etc., posted by the kindling effect on February 9, 2006, at 14:03:56
Hi Dave
>.......was you Ed who felt a kind of bad ,insecure anxiety on Risperdal or a similar AP?
I've only ever taken two APs, chlorpromazine (Largactil, Thorazine) and prochlorperazine (Stemetil, Compazine). I've never taken an atypical AP. I suffered severe acute akathisia on chlorpromazine. I didn't have any side effects on prochlorperazine because the dose was too low, I only took one dose anyway. Chlorpromazine caused considerable anxiety as well as akathisia. It created a feeling of helplessness.
>For some reason clonazepam causes muscle tightness/stiffness, and insomnia in the past.Lorazepam is one of the few GABA meds I don't seem to have problems with.
Have you tried diazepam (Valium)? I think it might be useful, at an adequate dose - which would need to be pretty high to substitute for 5mg lorazepam.
>Haven't tried Tetrabenazine or opiates.Was prescribed Nabilone by a doc but I filled the script and didn't take it and he changed his mind. It was a long shot.
Have you ever tried an anticholinergic drug or a serotonin antagonist such as cyproheptadine?
There's an interesting case report of a patient with tardive akathisia being successfully treated with moclobemide.
>Close to a year psychotropic free.
So you're just on lorazepam at the moment, nothing else?
Regards
Ed
Posted by the kindling effect on February 9, 2006, at 18:21:18
In reply to Re: Akathisia vs. Tardive dyskinesia, posted by the kindling effect on February 9, 2006, at 11:27:10
> > > Akathisia is not short for tardive akathisia. Tardive akathisia is something different. Tardive is derived from the Latin word meaning late onset.
> > >
> > > Tardive akathisia differs from normal akathisia because it 1) lasts for a very long time (if not indefinitely) even when the drugs that caused it are stopped and 2) has a tendency to be extremely difficult to treat; drugs such as propranolol (which is very effective in temporary neuroleptic-induced akathisia, usually does nothing for tardive akathisia), benzodiazepines, opiates, dopamine depleters (such as reserpine), and divers other things have proven unsatisfactory results.
> >
> >
> > You might look into wemove.org and other sites devoted to movement disorders. I can't discuss importation of drugs here, but people have imported Tetrabenazine (Nitoman in Canada) from Canada and England. It is considered a fast track orphan drug by the FDA currently. A company has filed a NDA recently to have it approved in the US for Huntingtons Chorea. It has been used in trials for TD in the same way reserpine has been used. It can cause pseudoparkinsonism, but one has to weight the benefits.
> >
> Depression and pseudoparkinsonism are the main two for Tetrabenazine. We have it here in Canada as you mentioned. Apparently it's not a nice drug if you already suffer depression ,anxiety etc. My rough understanding is reserpine is sort of irreversible DA depleter whereas tetrabenazine is reversible (think Moclobimide versus standard MAOIs perhaps). Dysphoria,anxiety,insomnia etc. are other side effects. This is my treatment option I've been given right now but I'm told I need to start in hospital due to possibility of becoming suicidal(more?) and due to side effects. I also believe you must request the drug from government under 'compassionate plea' request (something along those lines. I've been told I have mild chorea or (something that imitates it neurologists have differing opinions) but most say it is the akathisia when I'm under stress and staying still. Along with vatious tics. Huntington's isn't pretty o see. I've already been ruled out for Wilson's and Huntington's.
> Nitoman.(always think of Bart Simpson; ie 'neat-o man!' 'not sure how it's supposed to help dysphoria when it can cause it. (rhetorical. No theories or suportive comments please.)
>Scratch above comparison of Moclobimide to satndard mAOIs for Tetrabenazine & Reserpine. Remember reading somewhere that Reserpine actually does some type of possibly permanent damage to DA recptors,vesicles or something, whereas Tetratbenazine is reversible. Just to unclearly clarify. DAVE
Posted by the kindling effect on February 9, 2006, at 19:35:21
In reply to Re: TA etc. » the kindling effect, posted by ed_uk on February 9, 2006, at 15:16:53
> Hi Dave
>
> >.......was you Ed who felt a kind of bad ,insecure anxiety on Risperdal or a similar AP?
>
> I've only ever taken two APs, chlorpromazine (Largactil, Thorazine) and prochlorperazine (Stemetil, Compazine). I've never taken an atypical AP. I suffered severe acute akathisia on chlorpromazine. I didn't have any side effects on prochlorperazine because the dose was too low, I only took one dose anyway. Chlorpromazine caused considerable anxiety as well as akathisia. It created a feeling of helplessness.Helplessness.OK. Knew you'd suffered acute akathisia at some point.
>
> >For some reason clonazepam causes muscle tightness/stiffness, and insomnia in the past.Lorazepam is one of the few GABA meds I don't seem to have problems with.
>
> Have you tried diazepam (Valium)? I think it might be useful, at an adequate dose - which would need to be pretty high to substitute for 5mg lorazepam.Tried diazepam while on EFXR/Seroquel/lorezepam combo couple? years ago to attempt to replace the loraz. Definitely not as depressing as other benzos but was having panic attacks on it so I insisted on raising dose and frequency and seemed like akathisia. I said that was impossible
but was using lorazepam sub-linguals to pull out of it. Eventually doc pulled me off and I took a dose or too of Wellbutrin to get back on track.
Xanax a doc wanted to experiment last May? along with loraz. Akathisia increased anxiety.
i understand now that Xanax,Librium and sometimes Valium can all aggravate akathisia.I was totally confused and unbelieving at the time. Librium was suggested to me along with Doxepin by movement-neuro.I would try Librium even though Valium is a metabolite. Haven't done well with trycyclics. After a sleep study found I was getting 0 stage 4 sleep and almost no stage 3 I was tried on Amitriptyline(april?) at 5mg. for sleep. Lasted a week. Would wake for 2-3 hours in night with coldness,emptiness and my hands felt sore and creaky.Stiffnes eventually passed into the day as usual, lower back,hands wrists, and left arm just hung there(it was weird, like a manequins arm or something attached.) Many facial mini-spasms,twitches,breathless. Pretty stiff on it but I wanted to stay on it cause I could see a little into the future and felt a little more +? Cam't remember if it helped dysphoria. Was still impatient and restless inside but didn't move around so much. Think was too wired to read too;usually akathisia sign.chorea began shortly after coming off it along with mouth stuck opening during mid afternoon(like a frozen yawn)Not a nice feeling.Lorazepam doesn't help a lot. Mostly I try and hang on till mid afternoon. THere isn't supposed to be depression with TA. But it's been pointed out to me I'm often pushed into depression by meds; even ADs.
>
> >Haven't tried Tetrabenazine or opiates.Was prescribed Nabilone by a doc but I filled the script and didn't take it and he changed his mind. It was a long shot.
>
> Have you ever tried an anticholinergic drug or a serotonin antagonist such as cyproheptadine?Anti-cholinergic are apparently a big no-no with TA and can worsen it quite a bit(even if it masks it at first.) No doc has suggested them.
Cypro I tried to get but couldn't find it anymore herer in Canada. Docs seem to shy from it unless it's for very short term use. Personally I agree with you and would like to look into more. I don't have a doctor here anymore and the situation has come to a head. I've been told to go to Boston. I'm trying to find this doc that fenix has and get there asap(everything is a rush with TA patients right.)I don't understand the suicidal stuff although one neurologist said it's not uncommon with TA. You want to kill yourself but you don't want to die. Time is so intense it becomes your biggest enemy.
>
> There's an interesting case report of a patient with tardive akathisia being successfully treated with moclobemide.This i have not heard. Do you have the report?
When I tried Moclobimide about 5 years ago, pre-Efxr and pre-APs I was slow and shaky and drowsy with a bad startle response and weird anxiety/insecurity. I was so-out-of it but jumpy.Stiffness wasn't that bad.(besides usual serotonin side efxs which I don't count. Had similar problem on buspirone(but with agitation too).Some sedating meds seem to be bad news.Pdocs kept saying I had anxiety(every type) yet sedating meds made it worse and I finally tolerated EFXR (but not standard release very well) and Wellbutrin seemed alright. Always would help me sleep well for first couple nights.I know, sounds like Bi.P meds.>Close to a year psychotropic free.
This is incorrrect.Several meds since last October hospitalization(Lamictal in hospital and 3 weeks after. They tried prescription tryptophan for sleep but said I was more agitated and waking several times swearing at the nurses. Trileptal is probably what did me in. that was some of the most intense akathisia I've had along with muscle pain and stifnes and timeless destroyed sleep. Probably not that Trileptal is so bad for aka. per se just that the TA had been aggravated so much by that time. I didn't know there was a Tardive form of akathisia until it was too late(or didn't want to believe it). Several short, low dose trials trying meds like Luvox.
My sense of time is a little weird nowadays. June tried to go back on EXFR 14mg. for suicidal stuff. pdoc wanted to start a lot lot lower. Stayed on it for nearly a month. Jaw clenching, teeth grinding, vibrating,curled in a ball a lot holding legs toes wiggling,some weird anxiety,tons of akathisia, pacing,squirming up 2-3 hours middle of night again, eventually mind too spun too read.Was so cold on it. It was apparently a hot summer but couldn't feel the heat. I would sweat a little but couldn't feel(thought I'd pissed myself sometimes). Muscle stiffness,pain and coldness did it in the most.
Black empty mind.Sounds worse and shudders but these things I have all the time now. This is a constant problem now. I can't seem to visualize anything in my head off my own accord.Neuro-psych testing came up with visual-spatial abnormalities and some other stuff. Communication above average, that was the only normal thing I think.But I used to be a lawyer's assistant and an English teacher in several Latin American coutries and speak a few languages so it's probably just vestiges of that. Dementia been mentioned a couple times; nice huh?!So you're just on lorazepam at the moment, nothing else? 4.5-5 of lorazepam plus sub-linguals. Doesn't help a lot, especially mentally. Can't shut-up and sometimes swear I'm more scattered restless with racing mind.
10mg propran. a day. i go higher and run into problems.Stopping seems to be a problem now too but the neurologists here insisted on it again. The beta blockers have always been stimulating )mostly physically) for me and can cause some psychiatric problems. No one's figured this out yet execpt that I did come across a paper saying that by blocking beta receptors you may be leaving alpha receptors picking up the extra NE.I depise quick dx doctors in 20 minute consults who suddenly know exactly what it is you have and how to fix it ( i was told TA patients often developed a distrust of doctors and just laughed and nodded), but I can't seem to get past ADs or APs, like I can forget them or give up on them. They can help mentally and physically so much, so quickly (at least they used to.)I just want to get treatment before I end up trying EFXR or Seroquel or something again and making things worse (again).
Any suggestions welcome, including vitamin suggestions.Took vit. B complex last 15 years or so and can't tolerate it now, drowsy,calmer=akathisia,agitation. Iron was supplemented couple years ago but didn't do much for akathisia and dystonias showed up sometime after that, so who knows.Yet another run-on post. Thanks for listening.
DAVE.
> Regards
>
> Ed
>
>
Posted by ed_uk on February 10, 2006, at 15:57:57
In reply to Re: TA etc., posted by the kindling effect on February 9, 2006, at 19:35:21
Hi Dave
>......years ago to attempt to replace the loraz.......was having panic attacks on it so I insisted on raising dose and frequency and seemed like akathisia......
Perhaps you felt worse due to decreasing your dose of lorazepam, rather that due to the diazepam itself?
>I would try Librium even though Valium is a metabolite.
Chlordiazepoxide (Librium) is not metabolised to diazepam (Valium). Chlordiazepoxide and diazepam are both metabolised to desmethyldiazepam however - their most important metabolite.
>Haven't done well with trycyclics.
What about other ADs? Have you tried low-dose mirtazapine (Remeron)?
>Anti-cholinergic are apparently a big no-no with TA and can worsen it quite a bit(even if it masks it at first.) No doc has suggested them.
I wouldn't say there are any definite no-no's in TA because its treatment has been so poorly researched. Some patients may benefit from anticholinergics whereas other may find them detrimental. Pro-cholinergic drugs (such as donepezil, Aricept) might be useful for some, particularly for those who find that anticholinergics aggravate their symptoms.
A patient with TA responded to benztropine (Cogentin), an anticholinergic.......
>Cypro I tried to get but couldn't find it anymore here in Canada.
Cyproheptadine 4mg tablets are available without a prescription in Canada. I doubt many pharmacies will stock it but I imagine they could order it in for you if you ask. Tell them you find it a good antihistamine for your allergies. Cyproheptadine is inexpensive.
Cyproheptadine is an OTC (over-the-counter) drug in Canada......
http://www.hc-sc.gc.ca/drug2/product/p40420.html
>This i have not heard (RE moclobemide). Do you have the report?
Only the abstract.....
>
When I tried Moclobimide about 5 years ago, pre-Efxr and pre-APs I was slow and shaky and drowsy with a bad startle response and weird anxiety/insecurity. I was so-out-of it but jumpy.Stiffness wasn't that bad.(besides usual serotonin side efxs which I don't count.
:(
>10mg propran. a day. i go higher and run into problems
What sort of problems?
I wonder what the combined alpha/beta blocker carvedilol might do for you?
>Any suggestions welcome, including vitamin suggestions.
Have you tried vitamin B6 (pyridoxine)? It seems helpful in acute akathisia at least........
B6 in TD.......
Regards
Ed
Posted by the kindling effect on February 12, 2006, at 11:21:47
In reply to Re: TA etc. » the kindling effect, posted by ed_uk on February 10, 2006, at 15:57:57
> Hi Ed
>
> >......years ago to attempt to replace the loraz.......was having panic attacks on it so I insisted on raising dose and frequency and seemed like akathisia......
>
> Perhaps you felt worse due to decreasing your dose of lorazepam, rather that due to the diazepam itself?I wish that were the case. Weren't panic attacks per se but that speedy chest feeking and intensity of time know all too well. We did 4 or 5 trials with diazepam. It's definitely a different benzo. I liked it but was miffed at the strange side effects. I had pulled muscles on it after exercising similar to clonazepam. I don't understand that, it having muscle relaxant properties, but my Pdoc of the time said it wasn't that usual. Although I'm sure the lack of lorazepam had some effect even though they're supposed to be cross tolerant.
>
> >I would try Librium even though Valium is a metabolite.
>
> Chlordiazepoxide (Librium) is not metabolised to diazepam (Valium). Chlordiazepoxide and diazepam are both metabolised to desmethyldiazepam however - their most important metabolite.Thank you for the clarification. My laziness and over-generalization again.
>
> >Haven't done well with trycyclics.
I don't understand why?!! Amitrip. was the worst.
>
> What about other ADs? Have you tried low-dose mirtazapine (Remeron)?Yeah. 7.5mg. back pre-EFXR and atypical APs.Was only only on it 2 days before pdoc pulled me off;he was worried about aggression with the over-sedation,something he'd read. It's a whole new game now however and mirtazapine was one of the meds I wanted to re-trial, possibly even a lower dose. If I recall it has 5HT2 antagonism and also benefits sleep architecutre.I'd probably try even lower perhaps. I know the higher doses NE kicks in and akathisia can be an issue. When I asked doctors to re-rial they just look at me like I'm nuts or say 'ýou've already tried it.' But 2 days!?! It was sedating and found just sat it your stomch even though i hardly ate anything in 2 days.(similar to olanzapine in the in this regard; less appetite,more weight).Besides that I don't re-call any-many problems with it. Currently I have no doctor except a GP who will only refill my current meds.
How do Parkinson's patients handle mirtazapine?>
> >Anti-cholinergic are apparently a big no-no with TA and can worsen it quite a bit(even if it masks it at first.) No doc has suggested them.
>
> I wouldn't say there are any definite no-no's in TA because its treatment has been so poorly researched.
Very well put. I'd have to agree 101%. It's 2 different things discussing it however and haveing a doc who'll prescribe. THis is why I'm trying to find out who this Harvard doctor is so urgently(researching/treating TA). Do you have any idea how long Fenix is blocked for?Some patients may benefit from anticholinergics whereas other may find them detrimental. Pro-cholinergic drugs (such as donepezil, Aricept) might be useful for some, particularly for those who find that anticholinergics aggravate their symptoms.
Makes sense. My question is noalways, how long did they respond for. It looks like all I/we were doing was pften masking the TA unti it started coming through again. This could take weeks to months. Personally I still don't(can't) accept/believe that it's TA. It's so ^%$^% uncomfortable but some things don't fit, especially my reactions to beta blockers. Although there are an awful lot of things that are trademark TA and don't appear in anything else. Or as the ADD/OCD/Tics?tourettes neuro put it when they ruled tha out(except for OCD)'for seperate movement disorder nerologists have told you you've got TA in the past year(?). You'd better start accepting it. Now raise the dose of your propranolol'. Basically they seem to believe in Canada the only two possible treatments for TA are propranolol and Tetrabenazine. And I've been told if I can't handle the prop. I certainly won't handle the Nitoman.
There is more to it Ed. I don't know where your knowledge lies and if you have a good understanding of neurologoy or not(I sure don't, psychitric sure,neurology no) but I can try ,eventually to run down some of my more common symptoms for you. I understand you respond to many people on this board and only have so much time. All neurologists have also said more than TA obviously; depression , anxiety NOS(prob.definitely), mood disorder(this think is realated to the TA. I could even feel some of what I feel and act in the way fenix wrote.) This chages your whole being Ed. It scary sh*t. I remember the de-realization etc. from panic attacks years ago and they are a joke compared to this.
>
> A patient with TA responded to benztropine (Cogentin), an anticholinergic.......
>
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=1979500&query_hl=1&itool=pubmed_docsum
>
> >Cypro I tried to get but couldn't find it anymore here in Canada.
>
> Cyproheptadine 4mg tablets are available without a prescription in Canada. I doubt many pharmacies will stock it but I imagine they could order it in for you if you ask. Tell them you find it a good antihistamine for your allergies. Cyproheptadine is inexpensive.
>
> Cyproheptadine is an OTC (over-the-counter) drug in Canada......
>
> http://www.hc-sc.gc.ca/drug2/product/p40420.htmlYeah, I didn't look too hard. Actually someone else checked for me. I don't get out much. It makes tics movements worse and car rides seem to really aggravate the aka. couple hours post, sounds and movement can become overwhelming.A plane I had no problem with(only the delays before and after, trying to stand in lines without walking in circles and becoming agitated.Blah blah. I just want out of this hell.
I need a neuro on a regular basis, preferably who understands movement disorders anyone readng this.ASAP. Here in Canada our public system is bogged down. I'm on a year waiting list for a 20min. consultation with movement neuro in Toronto, who has already seen a videotape of me
and diagnosed TA and tardive tics.
>
> >This i have not heard (RE moclobemide). Do you have the report?
>
> Only the abstract.....
> Again, how long was the response? I say who cares, it's temp. relief but always look stupid and regret when the Aka. comes through again.
I know I'm being cynical. But I actually searched for my moclobimide notes and would try it again in a second.
The head of psychopharmacology for Mood Disrders Unit at Toronto Western told me my 'filter was broken and only Nardil would fix it'. And that's why background sounds and movements and urges were happening. He mentioned things I hadn't told anyone as well.So I hang on to this hope. Although he wasn't impressed when I told him my moclobimide reaction and dose. 'not enough to tickle your throat'as he put it. No doc will prescribe Nardil when I mention his take on it; even though they're all like "wow, you saw Roger Macintyre'. THat spooks me more. When I asy I saw so and so, whom I've never heard of, and doctors are like wow, but these big rep docs. haven't helped any, i don't know. It also seems to intimidate the other docs and sometimes I think they simply confirm a dx casue so-and so said so. I'm getting worked up, stop there.
This was at a follow up consult after he dxed 'some weird bipolar' and tried my on Trileptal which made aka, and movements/stiffness worse and I stupidly stayed on and even raised the dose and ended up with suicide attempts trying to stop the horrible restlessness but I was so tired at same time . I didn't have suicide attempts until about a year ago.I can't believe i 'm talking about this sh*t; after stalking here for 5 years.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=1687486&query_hl=7&itool=pubmed_docsum
>
> >
>
> When I tried Moclobimide about 5 years ago, pre-Efxr and pre-APs I was slow and shaky and drowsy with a bad startle response and weird anxiety/insecurity. I was so-out-of it but jumpy.Stiffness wasn't that bad.(besides usual serotonin side efxs which I don't count.
>
> :(
>
> >10mg propran. a day. i go higher and run into problems
>
> What sort of problems? Next e-mail.
>
> I wonder what the combined alpha/beta blocker carvedilol might do for you?Yes, I wondered too and have mentioned it when I had a doctor. Quetiapine has alpha 1&2 antagonism according to Stephen Stahl and it reaaly used to wipe out some of the huffing and hyperness, and accusations from Atenolol(only med to bring me close to paranoia, but I was aware of how I was acting so not true para. correct?)Atenolol in combo with EFXR and loraz too. Although I start seeing some similarities at higher doses of propranolo but way less serious. More just mean and sloppy, bad drunk like. Nadolol didnit do this. just slow profound, greyness, sadness, hopeless. Pindolol was very different. Every trial it made me so mentally wired and time so intense.
>
> >Any suggestions welcome, including vitamin suggestions.
>
> Have you tried vitamin B6 (pyridoxine)? It seems helpful in acute akathisia at least........No my B6 was just tested and I would try it but preferably with a doctor, esp. since B-complex seems to agrravate the situation now. A naturopath had me on HIGH dose B5 in the summer for 'anxiety' and it become a bad situation. She also had me on CU after the Wilson's testing showed low blood CU and abnormal ceruloplasmin.and her hair testing showed very low coppper but normal zinc and even higher iron.
THe CU supplements made me so cold in the summer and really nostalgic/crying but I sort of liked them because I tolerated music and could visualize things somewhat when I read. Akathisa got worse as well as tics and OCD stuff.Muscles spasms and cramping when try and go in pool. But i could remeber more recent thingsand feelings(ie.Latin America) Plus I was impatient and snapping at people apparently.I'm getting lost and rambling. THat time of day. Can feeel it building more in my legs. they are always crossed so tight now. Would love to be able to just sit with them sprawled and relaxed.
>
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15554771&query_hl=14&itool=pubmed_docsum
>
> B6 in TD.......
hose are massive B6 doses. Might be the way to go. Don't here much about the mega vit-E doses for TD anymore.
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10442256&query_hl=14&itool=pubmed_docsum
>
> This whole thing is so insane I kept expecting to hear conversion disorder. But no one has said that yet but me. And I just seem to keep getting myself in deeper.
What happens to biPolars etc. who end up with TA/TD and can't take their meds? Wha he hell do they do!?(ie. woman in Philly who got it from 4 or 6 mg. Risperidone and successfully sued ....don't recall company). So she has TD and flaming BPi now? So much TA/TD info is on schizophrenics and geriatrics.
I'd like to see an organization for people with TA, and reasearch and docs specifically for those people. WE MOVE seems to have everything except resources for TA. I've never even seen another person with TA (although I;ve seen just about every other movement disorder(except Wilson's) in clinics etc.
t hanks DAVE
Posted by ed_uk on February 12, 2006, at 15:42:45
In reply to Re: Tardive Akathisia. Any help please ASAP, posted by the kindling effect on February 12, 2006, at 11:21:47
Hi Dave
It must be very difficult for you to post here. Thinking back to my brief experience with acute akathisia I couldn't even be still for a second. Everything was impossible, I wouldn't have been able to make a 20 second phone call never mind write a post on babble. Acute akathisia was an experience of complete helplessness, torture really. Every minute felt like an hour. I thought it would never stop. Textbook descriptions of akathisia are usually very poor. They're just not vivid enough. They make it sound so trivial.
>If I recall it has 5HT2 antagonism and also benefits sleep architecutre.I'd probably try even lower perhaps. I know the higher doses NE kicks in and akathisia can be an issue.
That's right. Low doses may be beneficial for acute AP-induced akathisia.
Which med will you try next Dave?
Regards
Ed
Posted by the kindling effect on February 12, 2006, at 17:00:26
In reply to Akathisia » the kindling effect, posted by ed_uk on February 12, 2006, at 15:42:45
> Hi Dave
>
> It must be very difficult for you to post here. Thinking back to my brief experience with acute akathisia I couldn't even be still for a second. Everything was impossible, I wouldn't have been able to make a 20 second phone call never mind write a post on babble. Acute akathisia was an experience of complete helplessness, torture really. Every minute felt like an hour. I thought it would never stop. Textbook descriptions of akathisia are usually very poor. They're just not vivid enough. They make it sound so trivial.It's just nice to have someone who even understands. So many people have never heard of it or just don't get it. It's so difficult to explain. There are times when I can't move (curled in ball) fromthe intensity and other times when I can hardly move and am so s-lo-w and think how can I possibly have akathisia? during the afternoon dip wiht or without dysphoria. Sometimes I can't get up out of a carseat if it's mid afternoon. It;s like Parkinson's without the stiffness? The message from my brain to body doesn't compute,body's too lazy. After light exercise is similar drop to dyshphoria, seconds hours, can't move, flatness and by next day you pay severly agiatated constant pacing/fast walking around the house with legs AND arms vibrating, that buzzing at the base of spine and buttocks. Helpess yeah. You're too busy in hell to notice.
>
> >If I recall it has 5HT2 antagonism and also benefits sleep architecutre.I'd probably try even lower perhaps. I know the higher doses NE kicks in and akathisia can be an issue.
>
> That's right. Low doses may be beneficial for acute AP-induced akathisia.
I'll try anything, especially if it's not so depression inducing as some of these meds.
>
> Which med will you try next Dave?-I'd ideally like to see this doctor at Harvard, let him/her review my notes/med trials and go from there. Fenix if you're out there please provide me with contact info. My babblemail is on.well I desperately need a doctor to prescribe first. Ontario,Canada has a shortage and the last two gave up and said go to Boston. Family doc will only fill my lorazepam and propranolol. Funny reading about benzo-phobe docs here; docs I meet say don't worry, up to 10 mgs is okay. How muchdo you need? Here's 6 months,good luck. You want tons of sub-linguals too? I'm sorry I can't help more. Try Boston.
Any suggestions for doctors are welcome. My parents are even urging me to return to Brasil where I still have some contacts and the private system is more affordable than the US. It;s so difficult to think straight with this rushed ,restlessness inside. It's like the outside world doesn't exist, just too wrapped up in this feeling to notice. You've gotta b*llshit yourself a lot to keep going.
thank you for your time and patience Ed. Please keep me updated of anything you come acrross.
I feel so selfish. Like the type of person who only talk s about themself. It's become difficult to concentrate and have an actual physical concentration at times. It's hard to care anymore. Docs warned my parents about caregiver burnout. It's like i'm just spewing energy at times but you can;t harness it. I can't get away from myself. And fighting it can be worse still.
thanks again. DAVE
Posted by the kindling effect on February 12, 2006, at 17:03:29
In reply to Re: Akathisia, posted by the kindling effect on February 12, 2006, at 17:00:26
Please see some of my other posts for details.
I urgently need a doctor for Tardive Akathisia and you'd mentioned someone at McLean's/Harvard researching /treating.
Any info. would be greatly appreciated.You can POst or babblemail me.
DAVE
Posted by fenix on February 13, 2006, at 11:09:32
In reply to ATTN: fenix, posted by the kindling effect on February 12, 2006, at 17:03:29
>
> Please see some of my other posts for details.
> I urgently need a doctor for Tardive Akathisia and you'd mentioned someone at McLean's/Harvard researching /treating.
> Any info. would be greatly appreciated.
>
> You can POst or babblemail me.
> DAVEHarvard? Are you near massachusetts?
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