Tardive Diskenesia , should I stay on the med?

[Reza23]

Greetings,

 

long story short, I have developed mild tardive diskenisia. Mild to moderate, but not severe, over the span of a year or so. 

 

I'm very treatment resistant and only 2 meds have worked for me, seroquel and tegretol. Seroquel is where I got the TD from and am still on seroquel. 

 

My question is, can TD increase or does it 'cap' off? I ask this because I need to stay on seroquel. On tegretol, the foggyness is so bad, I can't work or go to school. On seroquel, I can work, but it has caused me TD, and I'm worried that it could get worst, though I feel like it's 'capped' off.  I can deal with a mild amount of TD, but severe I can't. I'm wondering if it's worth the risk...

 

because I can't bare myself to not be able to work or go to school and go on tegretol. I'm a man, i'm 23, I'm young, I need to be able to work... it's part of my identity... besides, what girl wants to date a guy that can't work?

 

What are peoples experiences with TD? Has it 'capped' of, or has it continued to get worst?

 

I was on 450xr of seroquel, i'm on 250 xr now, with 20mg vyvanse. Even without stimulants, the tics are still there, so they are definitely from the seroquel. I have my tongue moving left and right without me controllling it. 

[Velvet Elvis]

Why do you think it's TD?  It's almost impossible to get from sequel.

 

There are many forms of EPS and TD is one of the rarest ones.

[december_brigette]

Have you discussed this with your pdoc?

 

I agree with VE's statement.

 

For me, the problem was when I was on 30mgs of abilify and I got the uncontrollable eye blinking, tongue movements, and the rabbit face making. I wanted off that shit as fast as possible. Once I was completely off abilify, all the TD symptoms stopped.

 

BTW, there are a lot of women who will date guys who don't work - for whatever reason. Work does not have to be your identity.

 

Also you might want to question what is the risk of continuing to harm yourself with these side effects or TD? That's something you may have to discuss with your pdoc.

 

db

[San]

This is something you have to discuss with your pdoc because TD is extremely rare and it's unlikely to get from Seroquel. A self diagnosis of TD isn't going to get you anywhere, and many things can be mistaken for TD.

[mellifluous]

I don't have tardive dyskinesia, but I do have other eps issues that are persistent and a number of thoughts on the subject. before going on some lengthy post, though, when were you diagnosed and by whom and why are you being kept on the medication that caused it, even at a lower dosage? have you been put on any medications to stave it off/slow the progress? 23 is an *incredibly* young age to have developed it and IF it is "self diagnosed" based on the tongue movement, you really are, fortunately, likely in need of a good doctor consult telling him/her all of what you've written here and suspect.

If it has been formally diagnosed, again, what steps are being taken to address it by your prescribing physician? I'm happy to say what steps are taken with my eps issues (which are not currently tardive dyskinesia but that is a major concern of mine die to the number of injections I've had and because I grew up with someone who developed it) but as I said, your first step should be a doctor and I'm concerned that it seems like it hasn't been. Please correct me if I'm wrong.

[dilemma]

I was on Geodon for 10 years when I developed TD.  My pdoc recommended I go on Clozaril because it affects dopamine via a different manner than other AAPs and therefore doesn't contribute to TD  He told me about all of the possible side effects and the fact that you have to get a blood test every week for the first 6 months, then less frequently, which gave me second thoughts.  I hemmed and hawed for a few months before the TD was starting to get even worse and I finally switched.

 

I was so worried about whether or not the Clozaril would treat my symptoms as well as Geodon as it was my go-to drug for those 10 years and really worked well.  It is a real hassle, but the Clozaril works as well if not better than the Geodon did.

[madmax15]

Why do you think it's TD? It's almost impossible to get from sequel.

Seroquel is the weakest antipsychotic. This is a quote from a drug book:

"Seoquel: Adverse affects: ...tardive dyskinesia(very rare)"

Seroquel barely touches dopamine.

[Reza23]

Hey guys, 

 

So, it's been formally diagnosed, just yesterday. The whole tongue movement is the main sign, but I have uncontrollable twitches all across my body. In fact, I tweaked my back pretty badly 3 months ago playing sports, and it still hasn't fully healed due to my body twitches so much and reaggravating it. 

 

I remember how I was like before the seroquel, and I know how I am now. It's 100% from the seroquel. Also, I was diganosed with very very mild tourrets before seroquel, so I had some RARE twitches that would ONLY occur in very very very stressful situations. My whole family have told me that I wasn't like 'this' before. Restless leg syndrome, facial tics, some motor tics, body restlessness, body movements/girations, and best of all, tongue moving left and right uncontrolabbly, that it self is a sign of TD. Also my brain is EXTRMELY sensitive to meds, child doses of medications can have side effects that are a shit ton for me. So I'm sured my brain sensitivity, coupled with the fact I had mild tourrets before (I read that's an indicator of increased chance getting TD), and the fact my dad just genetically got Dystonia a couple years ago, I'm sure I was in a higher likelyhood of getting it. 

 

Since I've been diagnosed bi polar 3 years ago, 80% of that time I have been on seroquel ranging from 150 xr to 450xr. So, unless it's the gabapentin, it's the seroquel. I will add though that during the past year and a half, I have been taking a small dose of stimulants for my ADD, 20xr vyvanse mostly. Perhaps that gave me more tics? But either way, vyvanse doesn't cause 'someone's tongue to be going left and right uncontrollably' ...

 

So, I've just been diagnosed recently. We're going to try clozapine in a couple days. My goal has been to get off seroquel either way, due to another side effect of anxiety it gives me. So I want to get off seroquel anyways.  But, if my only choice is seroquel,  what chance does the TD have to get worst? I mean, right now, as crappy as it is, it's only at a mild to moderate level. Obviously if it gets Severe, then that's no good. What's people's experience with TD? Does it continue to get worst once spotted? Has anyone stayed on a medication that gave them TD?  

 

So I spoke with my PDOC last night, he thinks it's best to get off it asap, and says it'll most likely continue to get worst, even though i'm on a super low dose, of 250xr.  I have an appointment with a neurologist on Friday, so I will discuss it with him.

 

The whole things unfortunate... I was seeing another PDOC for almost 2 years before, and the previous PDOC didn't test me every 1 or 2 months for TD. Piece of shit, I feel like killing the guy... (I'm not going to actually), I'm just really angry, because this could of been avoided, as my twitches, tics, body girations, irregular movement, facial tics, motor tics, etc. ALL started like 1 or 2 years ago. This could of been avoided and I could of been on tegretol... where as I wouldn't of been able to work, but at least I wouldn't be having TD... Fuck I'm pissed at this guy. 

[madmax15]

We are talking like 1 in a million. And the dose of seroquel isn't that high.

I've been taking high doses of antipsychotics for over 10 years and I have no TD.

[KateBeckett]

I took Haldol to control my Tourette's, but was having so many symptoms of TD that I desperately wanted to go off of it.  The TD didn't necessarily get worse, it just got to the point where I was tired of my legs shaking all the time.  I stopped Haldol yesterday after several weeks of tapering off of it.  My Tourette's is not at all as bad I was expecting, so I am not going on another anti-tic med.  The TD seems to not be there anymore.

[dilemma]

My TD kept getting worse.  At first I didn't think it was so bad, but people started noticing and asking me what the problem was.  That was when I started taking it seriously and switched to Clozaril.

 

It took over a year for most of the symptoms to go away.  I was worried for awhile that they never would.

[madmax15]

I met someone whose been on antipsychotics for over 40 years and he has NO Td.

[mellifluous]

 

So I spoke with my PDOC last night, he thinks it's best to get off it asap, and says it'll most likely continue to get worst, even though i'm on a super low dose, of 250xr.  I have an appointment with a neurologist on Friday, so I will discuss it with him.

 

 

i'm sorry to hear this is a formal diagnosis for you. as i said above, i don't have tardive dyskinesia, but other eps issues, so unsure how helpful my input would be as it's just not the same thing. i DO continue to take medication that causes eps, because of treatment resistence and the amount of antipsychotics i've gone through and the few that work, MUST work to the extent they can, BUT i take a lot of other medication to combat the side effects. and that's where i am because me unmedicated=public/legal concern situation or doing things that could or sometimes that i quite specifically intend to result in my corporeal demise.

 

i would suggest three things:

 

1.  if your psychiatrist says get off it and it'll get worse: listen to him. switch to clozaril, or give it a try. i have NEVER heard of it resolving with continued use of the medication that caused it. that's not to say it's impossible, but if your medical practicioner is saying it'll worsen and to get off the mediation, i cannot see a reason to disregard that, especially given you have options still. 2. get a second opinion on the tardive dyskinesia. that's a significant thing and if i got diagnosed with it, i would absolutely seek a second, and possibly a third, medical opinion on the matter. it sounds like you're seeing a neurologist and that's definitely something i think is a good idea. 3. you might want to get a second opinion on your meds if you have lost faith in your prescribing psychiatrist. and maybe get a second opinion from a neurologist. but i think if there's a plan to get you onto a different medication, you shouldn't disregard it.

[San]

happy2byoung: This isn't the place to say that the others don't have TD and to try and argue that it doesn't happen. So please stop posting unhelpful comments on this thread.

 

Reza: I hope the med changes help. Doctors don't really have a "test" for TD that they do, it's kinda (not blaming you!) up to you to report what's going on. They should ask, though, and that sucks your doc didn't. 

 

I hope the effects go away as you discontinue Seroquel. You're like me: The one in a million that gets an extremely rare side effect. It's rare, but it happens. I'm glad you have a neurologist on your case, and have some good care. Keep up with the neurologist for sure, that's more their area than the pdoc's, and the pdoc seemed kinda useless with your issues about tic's anyways.

 

Hoping for the best with the clozaril for you.

[Velvet Elvis]

Can we have a definition of TD please so we all agree on the terms we're using?

 

Most of the time when people say they have TD they don't really have TD because they don't know what words mean.

 

A lot of the time people refer to all forms of EPS as TD which is just wrong.

 

Even on Haldol you have only a 1% chance per year of developing TD.  As far as I know, with AAPs like Seroquel, only a handful of people have ever gotten TD from them.  If you got TD from Seroquel, you have probably had  a journal article written about you because you're a freak of nature.  

[San]

 

 

If you got TD from Seroquel, you have probably had  a journal article written about you because you're a freak of nature.  

 

Yup.

However, I'm not arguing with OP about the diagnosis they received from a doctor. The doctor could be wrong, but we don't know the OP or their doctor... 

 

EPS is far more likely. TD is incredibly rare. I thought I had TD on Thorazine (tongue uncontrolled movements, tics, etc) but it was EPS and went away upon stopping the med, where had it been TD, I don't believe it would have stopped.

 

I've had worse EPS on Abilify than I ever had on any other med, and this includes Haldol, Thorazine, and a typical antipsychotic injection called Piportil (not used in the US), for example.

[madmax15]

Even on Haldol you have only a 1% chance per year of developing TD.

It's actually 5% per year on the typicals.

[dilemma]

I don't know what you guys are trying to prove, but I was on Geodon for 10 years fine.  I had some akathesia initially, for which i took cogentin, but that went away. I was fine and then after 10 years I developed the classic lip and tongue problems of TD.  My pdoc said that he had about a dozen people in his practice that have developed TD over the years, and he put all of us on Clozaril.

 

It took almost a year for most of the symptoms to subside, and I still have some movement, but I don't think it's that noticable because people don't bring it up anymore.

[madmax15]

Well, my doctor said he never had anyone who got TD from the atypicals...

[Velvet Elvis]

Classic TD is supposed to be next to impossible with most AAPs, at least the kind that doesn't go away once the medication is discontinued.  

 

If one pdoc had multiple cases, I really hope he wrote them all up for journal articles because something in the water in his area is might be a contributing factor.   

[madmax15]

Classic TD is supposed to be next to impossible with most AAPs, at least the kind that doesn't go away once the medication is discontinued.

There was the argument that the atypicals haven't been around long enough since TD is a long term thing.

[Velvet Elvis]

 

Classic TD is supposed to be next to impossible with most AAPs, at least the kind that doesn't go away once the medication is discontinued.

There was the argument that the atypicals haven't been around long enough since TD is a long term thing.

 

 

Except the mechanism via which typical APs cause TD is well understood as are the reasons why AAPs should not.  They are simple enough that I'll try and explain them after I'm caught up on sleep if anyone really wants to hear it.  

TD is not a mystery symptom.  Why it happens because of what meds is very well understood.

[Reza23]

Hey guys,  thanks for the replies. 

 

So first off, 'happy to be young', chill the hell out. Just because it never happened to you or any of your doctor's patients, not only doesn't mean other's don't get it, but also it doesn't mean you or your doctor's patients couldn't get it. Everyone's brain is different and there are anomalies. It may be rare, but when it comes to how many people are on these meds, it can add up to quite a number of people.   For all we know you might be writing up a thread on this same subject tomorrow or in a year. So try and be a bit more compassionate... 

 

That being said, I have an update on the situation... so it turns out that the medication that is causing the more severe body movements/ tics/ uncontrolled tongue movements, etc.   is the gabapentin. It's the only med I've consistently been on for the past 2 and 1/2 years. Even when I was on tegretol I was on gabapentin, where as my TD lessened a little, but was still there. When I lowered gabapentin the the other day, everything decreased. It was amazing. My tongue decreased left/right, and everything felt better. I still had restless leg, facial/motor tics, but less overall 'trunk/body' abnormal movements. So I'm very happy. I'm looking forward to seeing how much my abnormal movement overall decreases. I'm so happy it's not the seroquel. However, it's a bittersweet happiness...

 

The only reason I started gabapentin was to take away the 'inner feeling of somethings wrong' side effect that seroquel manifested in me. It got so bad one time I was at a club, and started to have like a mini panic attack(I used to be a dating coach, I don't get panic attacks at the club) , and I had the worst stomach ache ever. And as soon as I left, I felt fine. That was my body telling me I'm anxious. That's what the seroquel does to me without the gabapentin. So, I sort of need it. And given how treatment resistant I am, I'm worried that I won't find something to replace the gabapentin. Because it really does make a huge difference all the time, as I feel the 'anxiety' side effect from seroquel all the time. We just started to try amatadine 100 mg 3x day, but for whatever reason, it makes me feel horrible when I take it with the gabapentin. I know this because I've given it 30 min before I took the gabapentin, and as soon I take the gabapentin, I can feel myself not being able to leave where I am, like I physically weight 1000000 pounds. Don't ask me how and why I'm so sensitive, I just am.  So now I have to give it a couple more days to ween off the gabapentin, then start the amantadine fresh.  

 

And my neurologist said it wasn't TD. So perhaps it's not... but I was worried that it was early signs of TD. And in general, I didn't have any tics or body movement issues until I began medication about 3 years ago. But movement disorders are in my family, my dad has dystonia, and I had a 'light' amount of tourrets, by light I mean it never showed up unless it was in a super stressful situation, and extremely minor, before meds. After meds, I'm twitching all the time. And like I said, my back hasn't had a chance to fully heal from an injury because I'm constantly aggrivating it. TD or not, this isn't good. Good news is it's getting WAY better when I decrease the gabapentin. As for the neurologist, I need a new one, this guys an idiot. He doesn't listen at all. He actually referred me to the movement disorder clinic, and I'm going to go there, and be monitored by them every 3 months or so. 

 

But quite honestly, I'm just exhausted of this all. I don't feel like going into full detail, but I'm extremely treatment resistant, extremely sensitive (child doses can be too much), have both severe ADHD+ Manic/depressive 2, and literally can't be off bi polar meds, not because I go too high or too low, I'm more in the middle with mixed episodes, but because it feels extremely extremely extremely painful when I'm off meds.  Like literally, all the time. It's like i'm constantly cycling. Sometimes it's better or worst, but generally as a default, it's extremely painful all the time. The bi polar and ADHD combine into something that causes pain all the time, when I'm off meds, since when the bi polar came out the closet 3 years ago. I've just had trouble finding a combo that works because I'm so sensitive and treatment resistant to the meds and aslo, the side effects hit me A LOT harder then most people because I'm so sensitive. And everytime I find something, then I have to find something else to counter one of it's side effects... and I'm freaking 23...  Sometimes it feels good to just give up. 

 

That's how I feel like right now. I'm afraid I won't find anything to replace the gabapentin... Anyone got any suggestions to take away that feeling from seroquel? I suppose I still have clozaril to try if I can't replace the gabapentin. 

 

Also, Like anyone have severe add and bi polar and come off meds? It's like I can't even be off it for a day or two. My brains cycling all the time extremely fast. The worst agitation ever. I guess I'm like in a mixed cycle all the time, and I know severe add impacts mood on a daily basis. Anyone have that experience?

 

But yeah, I just feel exhausted.