I have made it a point to not talk about medications on my blog and social media. It is actually a rule in my Facebook group Advocates for People with Mental Illnesses not to talk about medications. My reason is everyone is different and most of us are not medical professionals.
I won’t be talking about specific medications and certainly would never encourage anyone to go off their medications. However, I do feel a responsibility to caution you about taking psychiatric medications ( and other medications) without doing research about side effects and become familiar with the signs of tardive dyskenisia.
Tardive dyskenisia (TD) is characterized by involuntary and abnormal movements of the jaw, lips and tongue. Typical symptoms include facial grimacing, sticking out the tongue, sucking or fish-like movements of the mouth. Ref1
It can also can cause involuntary movement in other parts of your body, and cause problems with swallowing and breathing. In some of these cases it is called tardive dystonia.
Everyone is different and some may never get symptoms from a medicine and others experience life-altering changes. For those who do experience tardive dyskenisia, it can be debilitating. I can attest to it being life-altering as I have been struggling with it for about two years. Some people are lucky enough to have it go away, but it usually is permanent and has no cure.
There are currently two medications to treat it, but they are really expensive and I have heard from many people that the medications have made their symptoms worse and caused other problems like depression. Some people have success with natural treatment, but they come with risks and in my experience and hearing from others, most of them don’t help.
In order to be aware of the signs, you first need to know what medications can cause it. Remember, everyone is different and I highly recommend talking to your doctor before changing your medications in any way.
One thing that is REALLY important is that if you and your mental health professional decide you need to go off a causation drug, you taper off VERY slowly. Many doctors lack the knowledge of how to deal with TD. They are not aware that ppl should taper off so slowly that they will need to cut pills in quarters or less towards the end. The chances of it being permanent rises if you taper too quickly.
List of Causation Medications for Tardive Dyskenisia
Taking these medications can be the cause, but TD can also be caused by going off a medication. Symptoms also don’t always appear right away so it is often very difficult to determine what caused the tardive dyskenisia.
As you can see, the list is extensive and does not just include psychiatric medications.
It frustrates me..no angers me that pharmaceutical companies can put a black box warning on medication and they are covered and doctors don’t have to warn their patients about this horrific side effect. In my opinion, they should be required by law to let their patients know what signs to look for because if caught early and the patient is taken off the medication, there is a better chance of recovery.
If you know anything about me and have been following my blog, you know I am a strong advocate and don’t stop fighting. This will be my next thing on my agenda because if I can stop anyone from suffering the way so many of us are, I will do my best to change it.
I know going up against Big Pharma and the medical field is pretty much an uphill battle, but I’m not one to back away from a fight. If you are interested in helping, please contact your legislators (Find your Representative) , media and/or sign petition.
There have been cases won in regards to this, but it is really hard to prove and not too many people have been successful.
My fight will be to make it a requirement that in order to graduate from medical school, you must watch videos of people displaying TD symptoms, learn the early signs and how to treat it. I also want it to be mandatory that before a doctor prescribes a medicine that cam cause TD, that they show a video and explain the symptoms to look out for.
Not a lot is known about tardive dyskenisia. I have heard horror stories where psychiatrists, neurologists and other doctors won’t even acknowledge or someone with TD because either their lack of knowledge, ignorance, or they don’t want to admit they essentially caused it.
Videos of People with Tardive Dyskinesia
( Read and listen to his stories)
Doctor Describing symptoms with examples. Video
Symptoms you should look out for are
- Stick out your tongue without trying
- Blink your eyes fast
- Chew
- Smack or pucker your lips
- Puff out your cheeks
- Frown
- Grunt
- Wiggle your fingers
- Tap your feet
- Flap your arms
- Thrust out your pelvis
- Sway from side to side
These movements can be fast or slow
There is a lot more to share about tardive dyskenisia, my story with it and the incompetence and dishonesty related to the medications.
I will write more in the future and you have my word I will do what I can to fight this.
I hope you take this seriously and let everyone you know about it. I don’t want anyone to go thru the hell I have been living with. It is not just the movements that can drive you crazy, but the embarrassment and humiliation that comes with it. There is also pain involved including sores on my mouth and tongue and muscle aches and pains in my legs, jaw, and ears.
If you struggle with tardive dyskenisia and want to find support and learn more about TD, I highly suggest you join the Facebook group Tardive Dyskenisia Bully Free Support Group and other ones like it. There are a lot of very knowledgeable and supportive people. One thing I’ve learned from being in the group is the lack of empathy and knowledge of doctors. The personal stories of dealing with doctors are upsetting and endless and why I want to fight.
In conclusion, I want to once again say do not adjust your medications in any way without the help of a medical professional. Also, at the first sign of symptoms get help. Often, others will see it first so listen to them. One important thing I want you to take away is you need to educate yourself and be an advocate. If one doctor dismisses you, find another doctor or educate the one you do have. Lastly, taper slowly!
I hope you or someone you know never have to experience this. However, there are more and more cases being reported recently. I hope that by reading this article you are at least aware of what to look for and know how awful it can get and seek medical attention asap.
PLEASE sign the Petition that will help raise awareness and educate mental health professionals and their patients.
