Tardive Dystonia: news to me

[erikjms]

This may be short, as I just took my evening Clonazepam dose which seems to be the only thing that relaxes my neck muscles (eventually) so that I can stay asleep. It often takes effect by giving me thirty or so seconds of warning that I am about to drop off. So I apologize if I accidentally post gibberish; I don't always get enough notice to put the iThingy down and the random key presses that result might post or just erase all my hard work.

 

But I found this website this evening:

Dystonia Medical Research Foundation

 

I wanted to share it because it is a very useful resource so far as I have made use of it.

 

But also because reading the info there seems revelatory and I am too hyper to go to sleep without shouting from some rooftop or another first.

 

I could go into great detail--and I might--but in essence the descriptions of many of the typical symptoms of secondary/tardive dystonia are reading like the solution to this giant puzzle I have been trying to solve for a year and a half and I am at once relieved and angered by the possibility that this could be what is going on with my face, eyes, jaw, neck, shoulders, and the occasional twitchy muscle lower to the ground than chest level.

 

Jaw wants to clamp shut day and night: yes that could be dystonia!

Eyes sensitive to light when eye and other muscles freaking out: yes that could be dystonia!

Painful spasms that follow cyclical but still unpredictable patterns almost exclusively from the neck up: yes! That could be... Etc.

 

Oh and the Inexplicable fatigue: involuntary muscle contractions are just as energy intensive as voluntary ones. Dystonia may make me feel as though I were working out 18-24 hours a day every single day!

It would even explain my voracious appetite for protein, which is much like it was when I did work out regularly. The nausea that interferes with my current efforts to stay fed is still a mystery I guess, although I do want to investigate any relation between constant muscle activity and dehydration since it gets worse if I am without water for long and that aggravates any nausea trying to crop up at the time.

 

The question nobody can answer is why a psychiatrist who took his patient off olanzapine after more than twelve years because that patient was beginning to twitch in a Tardive Dyskinesia sort of way would continue to insist that muscle spasms, pain, and fatigue that have not remitted since the drug was discontinued were "not the Zyprexa".

 

I will concede that I may be fixated on this single etiology to the exclusion of other possibilities, but I still find it appalling that he suggested I get checked for mono when I mentioned fatigue (again) this last time around.

 

So anyway. Please bear with the enthusiasm; it is true that there is no cure for tardive dystonia, but for once in what seems like a lifetime of trying to claim appropriate names for myself, I am very keen to find out if this is indeed a socially-recognizable one for the bulk of what currently ails me.

 

I am vacationing in Seattle right now, but will be looking for a neurologist and/or movement disorder specialist when I return to San Francisco. In the meantime I will text this and a few other links to my MD and my therapist to see if they see me in these symptoms as well as I do. I am also going to take my shiny new Medicare card and go shopping for a different psychiatrist.

 

Tardive Dystonia. I understand why I had never heard if it, but prescribing neuroleptics without having heard of it? I know: the propaganda is no respecter of educative rank, but it took only two google searches as to the current knowledge of tardive dyskinesia for me to come across it.

 

Ok I think I might be sleepy enough to ignore the perpetual shrug that my shoulders find themselves fixed in. I hope that the link is helpful to someone else too.

[UnfoldingSky]

Well, just when you think you are on top of your problems you get a light bulb moment...Thanks for posting this.  Though it's awful that you developed this.

 

I have what likely is TD, and I never thought to link it to the fatigue I developed.  I have also done some things which appear to have helped it.  I only rarely get a twitch now, though for a few months a few months back I had some serious issues going on with my jaw. I am hesitant to post what helped since I can't be sure it wasn't a bunch of coincidences and am overall terrified I could suggest something that might make it worse.  But to give you some hope, I read of a case that was serious, where it spontaneously cleared up after the person had it for over a year.  They'd even apparently tried to take their life because of it.  So don't give up hope, you never know what might happen, it could go away, or you may find something that helps too.  They certainly haven't thoroughly explored every conceivable remedy for it.

 

Also your doctor should be ashamed, they really should know that Zyprexa causes it. 

[UnfoldingSky]

Having said the above re not posting remedies, it probably can't hurt to say though that eating salmon/tuna for its omega 3 content in theory should be helpful, since it helps the brain.  I have eaten more than my share of salmon (I can't tolerate fish oil; also I know it's generally said not to do this as the toxin burden in salmon is said to be high, but I've both read that canned salmon has a negligible amount but also a friend of my family's has been consuming large amounts of salmon for the past few decades and he is in good health , even though he smokes and his siblings all have had heart attacks or major health problems.  He's in great shape and he's not young either.  I am convinced because of him that there might be some overkill going on then with the toxin warning.)

[jjnz]

can anyone with Td confirm that "involuntary movement" means happens all by its self as opposed to a habitual movement.

I suck my cheeks and lightly bite my tongue, move it around my mouth (a lot in the night) and I catch myself doing it in the day, especially when I am anxious.

I can stop it easily but if I focus on something else, reading especially then I'll find myself doing it again.

I hope this is called paranoia.

[WiggleIt]

Anybody here recover from tardive dystonia?  

[WiggleIt]

Nobody has come back to this thread? Please, I am so desperate and all I keep finding is that most cases of tardive dystonia are permanent.

 

Please, God, help me.

[Faithbarelysurviving]

I have that too and is very severe... I don t know what todo .... takes away all the energy in me i am weak and wably like jello

God help us i ll try to find a diff dr if something helps i ll tell you

[Faithbarelysurviving]

Can i ask do you also get head tightness , tongue glued to the teeth then muving it around against the lower teeth?

If you vould describe your symptoms please, only if you can

[oskcajga]

I have that too and is very severe... I don t know what todo .... takes away all the energy in me i am weak and wably like jello

God help us i ll try to find a diff dr if something helps i ll tell you

 

Well that's probably because you're on like 10 different medications.  Anyone on that many meds is going to experience a WIDE RANGE of unpleasant side effects.

[InvisibleUnless]

can anyone with Td confirm that "involuntary movement" means happens all by its self as opposed to a habitual movement.

I suck my cheeks and lightly bite my tongue, move it around my mouth (a lot in the night) and I catch myself doing it in the day, especially when I am anxious.

I can stop it easily but if I focus on something else, reading especially then I'll find myself doing it again.

I hope this is called paranoia.

dyskinesias are, to my somewhat limited knowledge, both about involuntary/uninitiated movements AND/or the inclination towards those movements in absentminded contexts. i have been able to try to resist withdrawal dyskinesias sometimes, so its not quite the same as a reflex. i can minimize them sometimes, through intense mindfulness or distraction, but they are not ultimately under my conscious control, even if i can try to dissuade them. its like trying to hold down a rancid puke, or trying not to give in to seizure activity...not always possible, and not always productive, but sometimes helpful.

 

the dyskinesias caused by psychotropics usually center around archaic, evolutionarily ingrained motor activities that are essential to survival, such as suckling. they manifest as unconscious movements and inclinations occurring outside of the usual idea of optioning something in your head (ie "should i sit, or stand?") i dont think its paranoid to wonder at your ability to influence these things that are not consciously initiated. also to note, though, conditions like anxiety-triggered bruxism and are not dyskinesias in the same sense as damage caused by psychotropics, though the underlying neurological architecture may have similarities. this means that treatment can differ between the different causal factors, and you might get some relief through stress reduction techniques in addition to the normal healing process of withdrawal.  

Nobody has come back to this thread? Please, I am so desperate and all I keep finding is that most cases of tardive dystonia are permanent.

 

Please, God, help me.

ive experienced tardive/acute dystonias and dyskinesias in withdrawal, and though i have not 'recovered' in the sense of their being absent, they are not always as bad for me as they have been in the past. i am in a state of avoiding most physical locomotion/exercise, as that can create a rather problematic dystonic reaction, but keeping activities and expression rather light helps me avoid some of the severity when im not in a cycle of higher extrapyramidal symptom intensity.

 

though many non-withdrawal reports of tardive EPS issues reference patients that never recover, i think us withdrawing individuals have a decent chance at a full or almost full recovery in time. if i understand your sig correctly, you are still within your first year of 100% clean withdrawal, and also experienced these problems before dropping all your final meds...this, to me, implies that you might have a while yet to deal with these elements, but i dont think it should discourage you about hopefully eventually experiencing a freedom from their imposition. i understand that is a tall order, of course, but i do empathize, and am fighting that battle myself.

[WiggleIt]

 

can anyone with Td confirm that "involuntary movement" means happens all by its self as opposed to a habitual movement.

I suck my cheeks and lightly bite my tongue, move it around my mouth (a lot in the night) and I catch myself doing it in the day, especially when I am anxious.

I can stop it easily but if I focus on something else, reading especially then I'll find myself doing it again.

I hope this is called paranoia.

dyskinesias are, to my somewhat limited knowledge, both about involuntary/uninitiated movements AND/or the inclination towards those movements in absentminded contexts. i have been able to try to resist withdrawal dyskinesias sometimes, so its not quite the same as a reflex. i can minimize them sometimes, through intense mindfulness or distraction, but they are not ultimately under my conscious control, even if i can try to dissuade them. its like trying to hold down a rancid puke, or trying not to give in to seizure activity...not always possible, and not always productive, but sometimes helpful.

 

the dyskinesias caused by psychotropics usually center around archaic, evolutionarily ingrained motor activities that are essential to survival, such as suckling. they manifest as unconscious movements and inclinations occurring outside of the usual idea of optioning something in your head (ie "should i sit, or stand?") i dont think its paranoid to wonder at your ability to influence these things that are not consciously initiated. also to note, though, conditions like anxiety-triggered bruxism and are not dyskinesias in the same sense as damage caused by psychotropics, though the underlying neurological architecture may have similarities. this means that treatment can differ between the different causal factors, and you might get some relief through stress reduction techniques in addition to the normal healing process of withdrawal.  

Nobody has come back to this thread? Please, I am so desperate and all I keep finding is that most cases of tardive dystonia are permanent.

 

Please, God, help me.

ive experienced tardive/acute dystonias and dyskinesias in withdrawal, and though i have not 'recovered' in the sense of their being absent, they are not always as bad for me as they have been in the past. i am in a state of avoiding most physical locomotion/exercise, as that can create a rather problematic dystonic reaction, but keeping activities and expression rather light helps me avoid some of the severity when im not in a cycle of higher extrapyramidal symptom intensity.

 

though many non-withdrawal reports of tardive EPS issues reference patients that never recover, i think us withdrawing individuals have a decent chance at a full or almost full recovery in time. if i understand your sig correctly, you are still within your first year of 100% clean withdrawal, and also experienced these problems before dropping all your final meds...this, to me, implies that you might have a while yet to deal with these elements, but i dont think it should discourage you about hopefully eventually experiencing a freedom from their imposition. i understand that is a tall order, of course, but i do empathize, and am fighting that battle myself.

 

Lately, the worst trigger for my dystonic storms is the act of trying to fall asleep.  The next-to-worst trigger is waking up, in the event that I've actually managed to fall asleep, which is hardly ever.

 

I guess I don't really feel like living a life where my activities and expression are light, because that's not who I am as a person.  I resent being forced to be someone I'm not.    

 

 

[InvisibleUnless]

that is interesting timing---when the brain is making a state switch between operating modes.  lots of symptoms can crop up for people more at those times than others, with withdrawal or other neurological conditions.  it makes me wonder what dystonias you are experiencing, as it might give some context.

 

i completely understand the notion of being really upset and hosed at having to hold back...i was an exceptionally active and athletic person, and now i cant even take a walk around the block most days without serious consequences (or even simply being unable altogether).  before meds, i was sprinting, jumping off houses and over staircases, capable of doing hundreds of situps/pushups, etc...and now my body eats my muscles in my sleep because of the antipsychotics, so the bits i do gain back from before meds often get recycled before too long.  i lost like 40 pounds of muscle right off the bat when i began meds, and probably lost another 20-30 to fat replacing my lean tissue after that, in addition to the huge amount of weight and fat i put on while taking the meds.

 

and its not just being physically active that i miss and feel dehumanized without, its the mental activeness...breezing through tasks, thinking useful things, creating art.

[erikjms]

Posting this as an update on how I am doing with apparent TD primarily in my neck, shoulders, jaw, eyes, and other facial muscles. Much of it is pulled from a personal message I just sent, but it says pretty much all I have to offer at the moment.

 

I am getting a little tiny bit better very very slowly. The attacks/dystonic storms happen a little less often. But they do tend to cluster: I might go a week or two without much pain, and then have several days in a row where I cannot do much but sit in the dark.

I have been on Klonopin/Clonazepem for anxiety for many years, and so I decided to increase my dose slightly and it does help a bit with the dystonia. I take my largest dose at bedtime, which helps a great deal in relaxing my neck and shoulders enough so that I can fall asleep. I try not to reach for it during the day unless I am having a really bad day. I have been able to keep my tolerance steady this way, but I don’t know if this can last forever. One day at a time, I guess!

It is crucial to make sure I am hydrated and that I do not let myself get extremely hungry before eating. These two things are a bit of a balancing act: if I don’t drink a lot of water (at least 750 ml--about 25 oz) after a large meal, I risk a dystonic storm that hits my eyes, cheeks, and nose the hardest. It does still help to drink as much water as I can if I am already in pain. I try to stay hydrated throughout the day but I can get distracted pretty easily and forget to keep sipping. I also sweat excessively, so physical activity demands extra water while moving and after I have stopped. Again, a balance, as I can become ravenously hungry very quickly after a moderate walk, and so food and water have to happen very quickly sometimes. I eat a lot of peanut butter.

Rose-colored sunglasses are very helpful with my eyes. They become extremely sensitive to light in addition to spasming. I keep bright sunlight out of my room where I spend most of the day. In the middle of a dystonic storm, I will often sit with my eyes half closed with no lights on at all, keeping them unfocused, and meditating. I meditate most every day anyhow, and it can help me weather the pain and frustration to concentrate on breathing naturally, and to relax my eyes as much as I can, and sit for however long it takes. Sometimes I fall asleep for a while, which is usually ok with me.

Ibuprofen can help sometimes, although I get a lot of headaches anyway and it is not clear to me always where they are coming from. My jaw can get very stiff and sore, and ibuprofen can ease that up a bit. Also chewing on a toothpick both keeps me distracted from the pain and keeps me from grinding my teeth 24/7. I use these tea tree oil chewing sticks because I like them, but I would think a regular round toothpick would work just as well. Lately I have one in my mouth most of the time--perhaps a little oral fixation has developed? At least it isn't a cigarette!

I will be going to see a neurologist in about a month. I have continued to twitch on and off since stopping the Zyprexa almost three years ago--I was showing signs of tardive dyskinesia--and the twitches tend to foretell spasms if they occur anywhere from my chest up. My legs do twitch occasionally, but I am lucky in that they have not begun spasming--at least so far.

 

I will try to remember to update here if I find out anything from that appointment. I did finally get to see a psychiatrist who freely confirmed that yes, it is certainly possible that I have developed TD . My old psychiatrist no longer works at the clinic I go to, which is more than fine by me!

[InvisibleUnless]

those are some really helpful examples of how to deal with dystonia/dyskinesia that i hope people pay attention to.  you deprived yourself of overstressing stimuli where you could (like keeping things darker, or keeping your eyes covered in lighter places) and also gave your body proximal ways of dealing with the neurological expressions that can manifest in dyskinesias, with the toothpick.  youve paid attention to your bodys signals and patterns and adapted your routine to take care of the biological side of activities better, like drinking enough water, eating good foods, meditating.

[erikjms]

So I saw the neurologist yesterday: a very agreeable young fellow wearing a bow tie. The resemblance to Doogie Houser (US TV character played by a young Neil Patrick Harris) was remarkable. Dunno if he was trying for that; I did not ask because I did not think of it until later.

Basically he said, yeah: it looks to me exactly like a tardive movement disorder secondary to more than a decade of neuroleptic treatment. He went back and forth between calling it dyskinesia and dystonia--probably because parts of it manifest as relatively short twitches while other parts manifest as long, aching spasms. His boss agreed. This was at San Francisco General Hospital, where often one will see an intern working under a faculty member or senior MD.

That was pretty much it. He did recommend taking up to 1200mg of Vitamin B6 (Pyridoxine HCl) a day, as it has been shown effective for dyskinesias in clinical trials (recent? I don't know; I had not read about it before myself though). He mentioned Botox injections but said try the B6 first before we start injecting your face with toxins. I thought that was reasonable enough. Although I really really really am tired of the eye spasms I am also wary of Botox. I go back in six months to see if anything has changed.

The trip there and back wore me out too much for me to go looking for vitamins today. In fact and of course I had to consume a bunch of salty-minerally protein, water, and a sliver of Klonopin as soon as I got home because my face was beginning to seize up. I took a little nap and felt quite a lot better. The sea breeze is back here in San Francisco and my window faces West and I have to say the wind over my hot sweaty body was almost too sensual for family entertainment!

So I feel vindicated even if there is no guarantee that this condition will pass. Bittersweet, yes, but still affirming of my intuition all along that "it's not the Zyprexa" was a knee-jerk ass-covering move by a psychiatrist I used to respect but not so much anymore.

Doctor bow-tie also pointed out that my finger tremors were probably an effect of the Prozac: "everyone" he has seen on an SS/NRI has similar tremors. I have cut back to 40mg at this point--in 2012, when we discontinued the Zyprexa, I was at 80mg of Prozac. Much too high a dose but it is a little too easy to be lulled into complacency when one of your meds takes away all your energy to give a **** about much of anything.

 

InvisibleUnless, I appreciate the comment. Learning to listen to my body has been indispensable for dealing with this, and it has happened to me also to be part of a long and arduous process in learning to live with Complex PTSD. If I believed in reincarnation I would be wondering what on earth I could have done to deserve this sort of karma, but I don't think that is how karma works anyway. Life is a mess and bewildering and miraculous and in order to live one has to be ok with each of those. Or at least ok enough, I guess.

[oskcajga]

So I saw the neurologist yesterday: a very agreeable young fellow wearing a bow tie. The resemblance to Doogie Houser (US TV character played by a young Neil Patrick Harris) was remarkable. Dunno if he was trying for that; I did not ask because I did not think of it until later.

 

Basically he said, yeah: it looks to me exactly like a tardive movement disorder secondary to more than a decade of neuroleptic treatment. He went back and forth between calling it dyskinesia and dystonia--probably because parts of it manifest as relatively short twitches while other parts manifest as long, aching spasms. His boss agreed. This was at San Francisco General Hospital, where often one will see an intern working under a faculty member or senior MD.

 

That was pretty much it. He did recommend taking up to 1200mg of Vitamin B6 (Pyridoxine HCl) a day, as it has been shown effective for dyskinesias in clinical trials (recent? I don't know; I had not read about it before myself though). He mentioned Botox injections but said try the B6 first before we start injecting your face with toxins. I thought that was reasonable enough. Although I really really really am tired of the eye spasms I am also wary of Botox. I go back in six months to see if anything has changed.

 

The trip there and back wore me out too much for me to go looking for vitamins today. In fact and of course I had to consume a bunch of salty-minerally protein, water, and a sliver of Klonopin as soon as I got home because my face was beginning to seize up. I took a little nap and felt quite a lot better. The sea breeze is back here in San Francisco and my window faces West and I have to say the wind over my hot sweaty body was almost too sensual for family entertainment!

 

So I feel vindicated even if there is no guarantee that this condition will pass. Bittersweet, yes, but still affirming of my intuition all along that "it's not the Zyprexa" was a knee-jerk ass-covering move by a psychiatrist I used to respect but not so much anymore.

 

Doctor bow-tie also pointed out that my finger tremors were probably an effect of the Prozac: "everyone" he has seen on an SS/NRI has similar tremors. I have cut back to 40mg at this point--in 2012, when we discontinued the Zyprexa, I was at 80mg of Prozac. Much too high a dose but it is a little too easy to be lulled into complacency when one of your meds takes away all your energy to give a **** about much of anything.

 

InvisibleUnless, I appreciate the comment. Learning to listen to my body has been indispensable for dealing with this, and it has happened to me also to be part of a long and arduous process in learning to live with Complex PTSD. If I believed in reincarnation I would be wondering what on earth I could have done to deserve this sort of karma, but I don't think that is how karma works anyway. Life is a mess and bewildering and miraculous and in order to live one has to be ok with each of those. Or at least ok enough, I guess.

 

Interesting report. 

 

I would have to agree that getting off the SSRI is a fantastic idea.  It's hard to tell what's a side effect from zyprexa and what's a side effect from the medication your currently taking.  Moreover, it's possible that zyprexa caused damage and now the prozac is exacrbating it.  You're on a very high dose of prozac - I had severe reactions at 10 and 20mg - I have no doubt in my mind that all of your symptoms could be coming from the SSRI you're currently taking.

 

Honestly - in my opinion, unless you cut down on the prozac your symptoms may not improve.  This is just my personal opinion based on years of experience taking meds and dealing with their side effects. Your doctor was at least skilled enough to point out that the prozac is a problem - but from my experience with doctors, they don't really understand the way these medications work on the CNS and are very leery about adjusting your doses and ascribing side effects to something as well known as prozac.  They are even more leery about suggesting you stop taking a medication - although it seems clear to me that that's the only way you'll ever know if these symptoms will go away completely. 

 

So if I were in your shoes, I'd be tapering that prozac asap and have a plan in mind for how fast your going to taper and how long you wish to be on the "medication".

 

It might give you some peace of mind having gone to the doctor and be told that the symptoms are mostly from the zyprexa- but I hope I get the point across to you that unless you get prozac out of your system eventually, you may not get any relief.

 

I hope I'm wrong - but I don't think I am.

 

Let us know how you do in the future.

[Faithbarelysurviving]

 

I have that too and is very severe... I don t know what todo .... takes away all the energy in me i am weak and wably like jello

God help us i ll try to find a diff dr if something helps i ll tell you

 

 

Well that's probably because you're on like 10 different medications.  Anyone on that many meds is going to experience a WIDE RANGE of unpleasant side effects.

The littlest change in my meds makes the dystonia and everything else 1000 times worse. Reducing the Buspirone so fast as I did made me a million times worse.....I might still have withdrswals since July I think when I stopped decreasing....I haven t been on the site because I am feeling much worse and just...very very disturbed and in bed, i am like a vegetable with mental states changing from one moment to another...i wish i could explain it better but cognitively and psychologically impossible...I am still breathing though

[SuperRyu]

I wonder what happened to your story erikjms.... seems an interesting one... hope it gets a nice ending. Does your B-6 doses give you racing thoughts or accelerate your thinking too much?

 

I am currently having almost the same problem as yours only that this might have come from more than 7 years of taking seoquel. Also my spasms are in the jaw and most troubling is in my digestive tract that gives me the worst pain because I dont know if the enzyems/acid I produce is being affected by the spasms. My small intestines hurt a lot every now and then and I feel like it is irritated most of the time. At the same time (or after?) the symptoms on my digestive tract my jaw start to cramp from the inside and all the smooth muscle around it... sometimes affecting my inner nostrils!

 

I'm currently doing accupuncture for this for almost more than 6 months to a year and there seems to be minor improvements. I've recently coupled this with qigong (chinese slow movement meditation) and seems to be more effective at these dystonic reactions. I've also switched accupuncturist recently and she has been targeting to relax my stomach and to release more mucus and it has been working good although it is not totally eliminated yet. I am aslo precribed 1000 mg of non acidic vitamin C, fish oil and probiotics by her in a holistic (integrative) clinic.

 

I would tend to agree to osckajga to withdraw your anti depressant little by little. I was able to withdraw from all my psych meds although it was really hard and had a lot to go through (even breaking my relationship to my gf by then - hope this does not happen to anyone else). I have withdrawn from them after having the opportunity when my previous company shutdown.

 

I am now on my 4th year coming off all my psych meds including anti-depressants, antipsychotics, and small amounts of benzos thaf I have taken for almost 14 years of my life since 1995.

 

I hope everybody gets healed through time.

 

Cheers!!

[lanah]

I'm scared I might have developed TD too. Very desperate and in doubt if I should rapid taper my seroquel or not. I know I wll probably get severe insomnia/psychoses if I do

[InvisibleUnless]

i read through your thread and drug history.  people are already helping you there with this.

 

i will just add that withdrawing from antipsychotics can provoke or worsen your TD.  it already looks, to me, like your TD might be due to withdrawing rather than pure longer term use, but they sort of add together in stressing the brain.

 

i have also noticed that mental state and choice of physical activity can sometimes affect how bad my movement disorders are expressing at a particular moment in time (TD, parkinsonian tremors, etc).  the severe dystonias and dyskinesias you were mentioning in your thread are very much associated with tapering off antipsychotics, though i am not able to tell you exactly what is being caused for what reasons or how long it might last.  i can say that changing how i go about my daily activities has helped reduce some of them, but sometimes things worsen significantly even if i have been taking the best care of myself, avoiding exercise, and so on.

 

cold turkeying risperdal and going through other significant fluctuations may have made TD and other neurological symptoms more likely to happen, but overall i think this is likely to be withdrawal-related and you will heal over time.  definitely listen to alto in handling your symptoms, doctors, and tapering.  perhaps look back to your cold turkey experience with risperdal to see if there are any similarities to your present experience (though not having benzos to soften the edges might make it harder to read).

 

personally, tapering entirely off antipsychotics was harder the second time, because i had several more years of polydrugging under my belt.  i do not recommend drastic reductions in your seroquel, especially after your responding really badly to several rapid tapers in the past few years.  chronic stress and anxiety over your TD situation may cause more wear on your brain, so finding a way to feel more calm about it might help you stay afloat better.  meditative techniques and imaginings, distractions, and positive conversations about things are a few ideas for restoring a bit of peace.  other members on here would have a wide variety of constructive suggestions, and there are threads here and there covering that sort of thing.  i hope that doesnt sound like ******* advice, because i know these situations can be quite alarming and i dont want to sound like the person that says "just calm down!"

 

a rapid taper of seroquel could definitely provoke severe insomnia, psychotic reactions, and worsening EPS/movement disorder spectrum symptoms.  im not sure how you would react, and dont feel comfortable making suggestions---only offering perspectives based on my own recovery processes and those of a few other antipsychotic taperers.  you will probably also deal with a prolonged period of healing from seroquel even after you have completely tapered off it.  but i have faith you can recover, and that you may be completely without TD at some point.

[lanah]

This is actually very helpfull. Thank you. I've been very stressed lately. Obessing over the seroquel (a bit ironic) 
My risperdal cold turkey was: muscle stiffness (extreme) muscle weakness, GI problems, swallowing problems and psychoses/dp/dr. Also a lot of anxiety (which I have again) ocasional insomnia (mild)
But no movements; 

Now: dryness, muscle stiffness, the movements, anxiety, insomnia, obsessive thoughts, coordination problems, dropping stuff all the time, eye problems, cognitive fog. 

But benzo's and trazodone also play a part. 

I'm waiting for my doctor to return my phone call. so I will definitely ask, but I awake since 2 am and panicking/hypomanic. 
I have a hard time balancing from going slow to OMG I NEED TO GET OFF THIS MED NOW 
Either way I lose (that's the feeling I'm having right now) 

[SuperRyu]

Hi lanah, your last paragraph was exactly as i felt when i was tapering.

 

Do it slowly... I know it's like like having super human strength to undergo this.

 

Hang in there

 

Cheers!

[SuperRyu]

Hi lanah,

 

I've browsed your history a little... But seems your Seroquel dosage was too low for it to have an antipsychotic effect or something...

 

I've read this from some article some time ago for seroquel.

 

I'm not sure though because tardive dystonia / dyskinesia should be more apparent from using antipsychotics

 

Cheers!

 

SuperRyu

[lanah]

Yes but you have to look at my total history. Which does not fit in my signature. 
10 years of risperidone, cold turkey

Then 1 year of high dosage of primperan cold turkey
then benzo's cold turkey
Then seroquel

[lanah]

Ow yes it's possible it does not have an antipsychotic effect. (did not read your sentence well, brain fooooog)
But I do get rebound psychoses from cold turkeying risperidone. 
And every little cut I feel I lose a little bit of reality. That's why I know if I go too fast it will be much much worse. 

[InvisibleUnless]

having differing affinities at various doses is not a very good predictor for longer term polydrugging side effects, and whether or not a particular drug was at a sufficient dose to cause them, in my limited opinion.  this is especially true because binding affinities do not say much about personal susceptibility and reactions, much less to additional or subsequent drugs and drug-induced changes.

 

when i was first tapering off all my drugs, i was in the biggest hurry to drop the risperidone---none of the other classes of medications seemed to fry my brain nearly as badly as the antipsychotics.  i definitely empathize with your concern.  i am not sure if i tapered too quickly or if my symptoms would have been this bad no matter how many months i took, but i can most confidently support a slow and purposed taper.

 

jumping down in your taper can provoke the same symptoms you are hoping to avoid.  i find it interesting that your side effects seem quite different from the other antipsychotic, and do not know enough about the drugs or peoples experiences to know if that is about your own reactions, or particular multi-drug effects, or what.  maybe someone will chime in, because id find it potentially relevant towards understanding my own side effect trends, having always used antipsychotics in tandem with other medication classes.

 

both your risperdal withdrawal symptoms and your current symptoms are very familiar to me, and i tended to have both sets simultaneously for the past 5 years.  what sort of side effects are covered under that "eye symptoms" category?

[lanah]

Eye pain, bad eye sight (not easy to describe I cannot see when it's a bit dark or a bit too bright, I cannot see how far something is from another point) , eye dryness, my eye twitch luckily subsided for now

[Craig]

that is interesting timing---when the brain is making a state switch between operating modes.  lots of symptoms can crop up for people more at those times than others, with withdrawal or other neurological conditions.  it makes me wonder what dystonias you are experiencing, as it might give some context.

 

i completely understand the notion of being really upset and hosed at having to hold back...i was an exceptionally active and athletic person, and now i cant even take a walk around the block most days without serious consequences (or even simply being unable altogether).  before meds, i was sprinting, jumping off houses and over staircases, capable of doing hundreds of situps/pushups, etc...and now my body eats my muscles in my sleep because of the antipsychotics, so the bits i do gain back from before meds often get recycled before too long.  i lost like 40 pounds of muscle right off the bat when i began meds, and probably lost another 20-30 to fat replacing my lean tissue after that, in addition to the huge amount of weight and fat i put on while taking the meds.

 

and its not just being physically active that i miss and feel dehumanized without, its the mental activeness...breezing through tasks, thinking useful things, creating art.

 

 

I can't believe I'm finding other people with this problem too.  I went from specialist to specialist trying to find out why I had what looked like Parkinson's in my 30s.  No doctor ever suggested this may be caused by my SSRI....and one laughed in my face when I requested an MRI.  Last December I found a book called  Prozac Backlash that describes these symptoms as being unknown by most GPs and psychiatrists.  When I found the book I knew I had to begin tapering Prozac and I did....and the dystonia seems to be improving.  The examples described in the book said that most people's dystonia completely disappeared after 6 weeks after their last dose...so I am praying will be the case with me.  In the mean time I have been training and exercising like a dog even though I would look and feel like I had a bad hangover at its worst.  It has been very difficult because it has changed the way I look.  It locked my neck, shoulders jaw together as well as twisted my torso.  People who did not see me for a little while were  like "what the hell happened to you???"  I had no explanation and even felt disdain from people like I had really let myself go or something,  I have received the most insensitive comments from friends and strangers because I was very fit before I started taking the drugs so I did not know what to make of this but it hurt a lot.  Has anyone else had this related to the dystonia?  I felt like a major freak of nature but now  I am getting better with less Prozac every day!!!  I can see the dystonia in my jaw has decreased and my face looks much thinner already?????  I'm tracking my  progress with video and photos to see the transformation.  It is VERY dramatic as I was jogging up the hill that usually kills me I felt like I was on an escalator!!!! 

[InvisibleUnless]

hey, welcome man.  yeah, youve come to the right place.

 

i was diagnosed with tremor (basically parkinsonian tremor/parkinsons) by the neurologist himself.  i am very familiar with the spasms and muscle issues you are mentioning.  some days i have been so wretched and contorted into static positions that i could not even get out of bed, or sit or stand straight up.  ive spent some days walking around like quasimodo, trying to be functional to some degree while my form is twisted and my muscles are clenched or uncoordinated.

 

there are lot of other issues ive had which are related, as well.  things like dyskinesias (compulsive movements, chewing and suckling, neck-rolling, etc), problems with coordinated movements (dropping and breaking things, cutting and burning myself, constantly biting myself while i try to eat, etc), dystonias that are so painful and debilitating in my body that i cannot exercise (which can itself be brought on by exercise, even just walking), and plenty of other issues.  i was diagnosed with carpal tunnel as well, after quitting everything and degenerating into all the muscle problems.

 

for me, it has all been part of the healing process, but some weeks or months i am pretty restricted.  i know what you mean, about people looking down on you, or thinking youve become some lazy or disheveled shell of a person.  it takes a toll.  i always felt even more uncomfortable going out in public after the meds caused me to gain like 80 pounds.  a lot of people claimed it looked good---better, even---which was almost as insulting.

 

SSRIs, other antidepressants, antipsychotics, and other psychiatric medications can definitely cause everything you have mentioned.  it lists so in the prescribing information released by the manufacturers themselves.  patients are almost always more informed about their own side effects and discontinuation symptoms than the doctors, which is backwards, scary, and sometimes quite dangerous when we are seeking treatment.

 

your seeing fast results with your taper is a wonderful sign, and should be considered encouraging inandof itself, as many people here feel frustrated at how long some symptoms take to resolve.  keep us posted about your progress, i will return to your thread sometime in the future to see if there are updates.

[WiggleIt]

If you are in the US, there IS a class action lawsuit being built against psych meds that cause movement problems.  If this has happened to you, please read the blurb below and call these lawyers!!!  I already did, and I'm definitely moving forward to get some small piece of justice.  NOTHING will make up for what was done to me, but AT LEAST I will get to face my attackers.

Please read this and please call:

"Have you come down with a movement disorder from psych meds, whether they were prescribed to you on-label OR off-label? Did you come down with permanent or temporary dystonia or dyskinesia or akathisia or myoclonus from psych meds?
 

Please join me and others who are working with a law firm to hold the pharma companies accountable.
 

Call Grisham and Barnhardt at 434-293-2939. Ask to speak with partner attorneys Tyler or Addison, or with their assistant/paralegal Bethany.
 

Please, we need ALL the victims to come forward, no matter how long ago this happened to you!"

[Prohealer]

I had this (really bad) back in around 2014 when i was put on Abilify for a short time but it was acute. I then had it again mildly when I cold turkey-ed Fluoxetine & Risperdal in April-May time this year. It went away but is now back again slightly worse. It's pretty much the same as back in 2014 although i can actually manage to lift my head this time.

 

I'm hoping it's just a wave like last time but I can't get a chance to rest up due to current stress. I find that avoiding really stimulating activities helps a lot.

[WiggleIt]

My face TD and tongue protrusions are way worse and I'm devastated.  How do you guys live like this?  I've been off meds for two years.  I slowly improved for a while, but worsened at 20 months off.

Now, face and tongue TD worsened again at 22 months off.

Tongue is sticking out of my stupid head as I write this.

[WiggleIt]

There don't seem to be very many of us… Maybe that's why nobody cares that our lives got ruined.  Because as long as the pharma companies and doctors can say that we're in the minority, we don't matter.  

Face it: we are an acceptable casualty of war.

[Prohealer]

Ill have to agree with you on that one wiggleit. I pray that wer'e both just experiencing particularly bad waves at the moment. Im taking extra care of myself right now i suggest you do the same.

[Prohealer]

The joke of it is, i recently had a drs appointment for something unrelated and my wd came into conversation. He told me that "the ADs and APs are likely to be out of my system by now".. Does he not understand what withdrawal even is? Lol

[WiggleIt]

No, he doesn't, and he should be drawn and quartered.