LIFE WITH TD

A place for those affected by tardive dyskinesia (TD) to learn, share, and find inspiration together.

One in four peo­ple tak­ing men­tal health med­ica­tions may be affect­ed by the uncon­trol­lable move­ments of TD.1

Read about the real-life expe­ri­ences of tar­dive dysk­i­ne­sia patients and carepart­ners, from rec­og­niz­ing uncon­trol­lable move­ments, to the dai­ly impact of TD, and the moment they decid­ed to talk to their doc­tors about man­ag­ing the movements.

Click Here to Explore Their Stories

Tar­dive dysk­i­ne­sia (TD) is a move­ment dis­or­der that caus­es a range of repet­i­tive mus­cle move­ments in the face, neck, arms and legs. TD symp­toms are beyond a person’s con­trol. These symp­toms can make rou­tine phys­i­cal func­tion­ing dif­fi­cult, sig­nif­i­cant­ly affect­ing qual­i­ty of life.

Although some­times asso­ci­at­ed with con­di­tions such as schiz­o­phre­nia, TD pri­mar­i­ly occurs as a side effect of long-term use of cer­tain med­ica­tions. It can become a per­ma­nent con­di­tion even after a per­son stops tak­ing the medication.

Symp­toms of TD can include:

  • Jerk­ing hand and leg movements
  • Neck twist­ing
  • Dif­fi­cul­ty swallowing
  • Eye blink­ing and grimacing
  • Lip smack­ing and invol­un­tary tongue movements

TD symp­toms typ­i­cal­ly occur after sev­er­al years of tak­ing antipsy­chot­ic med­ica­tions, although they can emerge with­in just a few months. TD is also relat­ed to pro­longed use of med­ica­tions for nau­sea, and med­ica­tions that treat neu­ro­log­i­cal dis­or­ders, such as Parkinson’s disease.

Any­one tak­ing an antipsy­chot­ic may devel­op TD, but the risk of TD can be high­er for cer­tain people:

  • Old­er adults
  • Females
  • Those with a fam­i­ly his­to­ry of TD
  • Hav­ing neg­a­tive symp­toms of schizophrenia
  • Peo­ple of African descent

While these risk fac­tors are out of our con­trol, there are oth­er fac­tors that increase the risk of devel­op­ing TD that can be managed.

How Can I Manage The Risk Of Tardive Dyskinesia?

You can help man­age the risk by address­ing lifestyle fac­tors that increase the poten­tial to devel­op TD. The risk of devel­op­ing TD ris­es with:

  • Smok­ing
  • Sub­stance use
  • Uncon­trolled diabetes

Proac­tive­ly tak­ing care of your health by quit­ting smok­ing, avoid­ing sub­stance use and man­ag­ing blood sug­ar lev­els can be pro­tec­tive and reduce the risk of symp­tom onset.

Oth­er steps you can take to help man­age the risk include ask­ing your health care provider for rou­tine screen­ing of move­ment symp­toms. Rec­og­niz­ing the symp­toms of TD ear­ly can help lessen their sever­i­ty, so these screen­ings should occur every three months.

You can also ask your provider to review your cur­rent med­ica­tions and dis­cuss options. Although it can still occur, rates of TD appear to be low­er with sec­ond-gen­er­a­tion antipsy­chot­ic med­ica­tions. Long-term use of antipsy­chot­ic med­ica­tion to treat a chron­ic men­tal health con­di­tion is usu­al­ly still nec­es­sary, but safe­ly adjust­ing or chang­ing med­ica­tion may be an effec­tive option.

Exam­ples of antipsy­chot­ic medications:

First-gen­er­a­tion or old­er antipsychotics: Sec­ond-gen­er­a­tion or new­er atyp­i­cal antipsychotics:
  • Chlor­pro­mazine (Tho­razine)
  • Fluphenazine (Pro­lix­in)
  • Haloperi­dol (Hal­dol)
  • Mesori­dazine besy­late (Ser­en­til)
  • Molin­done (Moban)
  • Per­phenazine (Tri­la­fon)
  • Pimozide (Orap)
  • Thior­i­dazine (Mel­lar­il)
  • Tri­flu­op­er­azine (Ste­lazine)
  • Arip­ipra­zole (Abil­i­fy)
  • Cloza­p­ine (Clozaril)
  • Lurasi­done (Latu­da)
  • Olan­za­p­ine (Zyprexa)
  • Paliperi­done (Inve­ga)
  • Meto­clo­pramide (Reglan)
  • Risperi­done (Risperdal)
  • Ziprasi­done (Geodon)

 

It’s impor­tant to work with your treat­ment team to make informed choic­es about med­ica­tions and the best way to man­age all your health conditions.

How Is Tardive Dyskinesia Treated?

If symp­toms of TD devel­op, your health care provider will eval­u­ate your treat­ment plan and med­ica­tion. Your provider may choose to change your med­ica­tion, or add one specif­i­cal­ly designed to improve move­ment symp­toms. It’s impor­tant that you don’t abrupt­ly stop tak­ing a med­ica­tion with­out talk­ing to your health care provider.

Each per­son responds to treat­ment dif­fer­ent­ly, but effec­tive options have emerged over the past sev­er­al years that help relieve symp­toms of TD.

The first lev­el of treat­ment options include spe­cif­ic move­ment dis­or­der med­ica­tions, such as val­be­nazine and deutetra­benazine. These med­ica­tions are thought to help by adjust­ing dopamine recep­tion in areas of the brain respon­si­ble for motor control.

Sec­ond-lev­el treat­ment options include clon­azepam, which is some­times giv­en as a short-term med­ica­tion for mus­cle rigid­i­ty. Peo­ple have also found relief from the herbal sup­ple­ment gingko biloba.

For symp­toms that are less respon­sive to these treat­ments, your clin­i­cian may pre­scribe a drug used to treat move­ment symp­toms in Parkinson’s dis­ease called aman­ta­dine. Addi­tion­al­ly, there is some evi­dence that deep brain stim­u­la­tion (DBS) may be effec­tive when oth­er options have not reduced your symptoms.

Be sure to talk to your provider about poten­tial drug inter­ac­tions. Of note, a class of med­ica­tions called anti­cholin­er­gics have been pre­scribed in the past with the belief that they improved move­ment symp­toms. How­ev­er, we now know these med­ica­tions do not improve symp­toms — and may even wors­en TD, as well as oth­er cog­ni­tive symp­toms, par­tic­u­lar­ly when tak­en with an antipsychotic.

Even mild TD symp­toms should be assessed and treat­ed to lessen these symp­toms and pre­vent fur­ther impact on dai­ly func­tion and qual­i­ty of life. If your provider rec­om­mends a med­ica­tion, but you are con­cerned about its cost, Pre­scrip­tion Assis­tance Pro­grams (PAP) may be able to help. PAPs can some­times sub­stan­tial­ly reduce med­ica­tion costs.

It is impor­tant to work with your pre­scriber and have hon­est con­ver­sa­tions about your symp­toms, treat­ment and any changes you feel are affect­ing your health.

How Else Can I Manage Tardive Dyskinesia?

Your health care provider will con­tin­ue to mon­i­tor your symp­toms and treat­ment plan, but you can also take an active role in your care to help man­age TD:

  • Make sure you have a rou­tine symp­tom assess­ment every three months
  • Keep track of your symp­toms and let your provider know about any new ones
  • Talk to your provider about your dai­ly func­tion­ing and qual­i­ty of life
  • Prac­tice self-care that includes phys­i­cal activity

Exer­cise can help relieve move­ment symp­toms, includ­ing tremors and those relat­ed to bal­ance, gait and flex­i­bil­i­ty. It also helps bal­ance blood sug­ar lev­els and improve hor­mon­al bal­ance for bet­ter man­age­ment of type 2 diabetes.

It’s par­tic­u­lar­ly notable that exer­cise improves cog­ni­tive func­tion and reduces the neg­a­tive symp­toms of schiz­o­phre­nia and response to chem­i­cal sig­nals. These are impor­tant fac­tors that affect both the risk for TD and the abil­i­ty to man­age it.

TD can be very trou­bling, for those who expe­ri­ence it as well as for their fam­i­lies. Although this con­di­tion can have a neg­a­tive impact on qual­i­ty of life, an informed treat­ment plan com­bined with proac­tive self-care can help effec­tive­ly man­age TD.

*Information from NAMI.org

Tar­dive Dysk­i­ne­sia Infor­ma­tion­al References

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