Dr. Hive - Jaw Tremors?

[Jenny in Florida]

The medical fun just never stops around here.

Several weeks ago, shortly after my psychiatrist put me on a new med (Abilify/aripipazole), I noticed I started having what I can only describe as tremors in my jaw, which got worse the more and the longer I talked. I discussed the issue with the doctor, who told me to stop taking the med, wait a week or two and then start taking something else (Zyprexa/olanzapine). While I was off the first med, the symptom lessened but never completely went away. At a follow-up appointment last week, the doctor strongly encouraged me to start the new med. 

It may be a coincidence, of course, but within two days the symptoms were back and worsening. On Thursday, I was having tremors in my hands as well as my jaw and was unable to stammer out enough sentences to schedule an appointment for a scan my radiation oncologist requested. My husband decided I needed to go to the ER, but I passed out/fell down in the bathroom while trying to collect my prescription bottles. I recovered and was walking to the car when I blacked out completely. I came to flat on my back on the driveway, unable to move much or even speak above a whisper.

Neighbors called 911, and I apparently seized in the ambulance on the way to the hospital.

After three nights in the hospital and more tests than you can list, we have no actual answers. I have been off the suspect med since the incident and, again, the symptoms have lessened but not gone away. 

I was released from the hospital last night and have spent all morning making phone calls and sending messages to all of my various doctors. I have appointments with my neurologist, primary, orthopedist (to check on the arm I broke last time I fell) and psychiatrist in the next few days.

So, Dr. Hive: What the actual heck? What should I be following up on/asking about/researching that would cause these issues?

[hippiemamato3]

Oh no! Have they mentioned Tardive Dyskinesia to you? Or maybe Neuroleptic Malignant Syndrome? I hope you are able to get some answers soon. That sounds really scary and stressful. 

 

[Jenny in Florida]

3 minutes ago, hippiemamato3 said:

Oh no! Have they mentioned Tardive Dyskinesia to you? Or maybe Neuroleptic Malignant Syndrome? I hope you are able to get some answers soon. That sounds really scary and stressful. 

 

 

No one has mentioned either of those things, but I turned up Tardive Dyskinesia is my own Googling. 

[PeterPan]

I'm not an expert, but yes some of the meds have pretty serious side effects. My dad has been on them for years, including olanzapine. Is this something you need *permanently* or treatment for a temporary stage? Obviously if you're having tremors, you need to discuss with your doc and get more options. However, just in general, the thing they'll say is if the problem is not grave enough to make you not care about the side effects, maybe you're not ready for the med yet. If it's a temporary condition, maybe you have some more options. 

And then just as a personal comment, is it possible your expectations are unrealistic? It seems like you're trying to do a LOT for a woman who just had such a serious break. I don't know, all I did was strain the tendons in my fingers/wrist and I was fatigued and napping a lot more. There's just a lot of strain and healing going on.

Could they set up bi-weekly counseling sessions to do some CBT and get you through some of this? Maybe try a psychiatric nurse practitioner if the main psych is too busy.

[stephanier.1765]

OMG, Tardive Dyskinesia explains what I've been going through for several years. I've been so worried about my symptoms! I've discussed them with my doctor but got no where with it. Now I can go in with this ammunition of knowledge.

@Jenny in Florida Thank you so much for sharing your symptoms! By sharing, I think you have saved me so much worry. Thank you! I am so, so sorry you've been going through this.

[Jenny in Florida]

2 hours ago, PeterPan said:

I'm not an expert, but yes some of the meds have pretty serious side effects. My dad has been on them for years, including olanzapine. Is this something you need *permanently* or treatment for a temporary stage? Obviously if you're having tremors, you need to discuss with your doc and get more options. However, just in general, the thing they'll say is if the problem is not grave enough to make you not care about the side effects, maybe you're not ready for the med yet. If it's a temporary condition, maybe you have some more options. 

And then just as a personal comment, is it possible your expectations are unrealistic? It seems like you're trying to do a LOT for a woman who just had such a serious break. I don't know, all I did was strain the tendons in my fingers/wrist and I was fatigued and napping a lot more. There's just a lot of strain and healing going on.

Could they set up bi-weekly counseling sessions to do some CBT and get you through some of this? Maybe try a psychiatric nurse practitioner if the main psych is too busy.

 

I don't really think I'm doing a lot, honestly. I've taken time off work to rest, make doctor phone calls (like today), etc. My boss has been amazingly patient and understanding about me needing to pace myself. And we've been doing a lot of take-out and convenience food meals. My husband has been great about taking on dog chores and driving me all over town for appointments and errands.

This definitely makes me question whether the drugs are worth the side effects, though. 

[Selkie]

IIRC, you're vegan, right? Are you getting enough B12? I'm sure that you and your doctors already have that covered, but I just wanted to throw it out there just in case. I remember that you've talked about neuropathy and coordination problems, and those can be symptoms of a B12 deficiency.

[PeterPan]

1 hour ago, Jenny in Florida said:

This definitely makes me question whether the drugs are worth the side effects, though. 

Let's just say those are some of the meds they would consider with my ds and I'm doing EVERYTHING I CAN before we get to that point. 

Psychiatrists are a funny thing. You would think it's pat, like oh just get a good one, but you can get a *wide range* of advice. If the advice you're getting from one is not meshing, try another. Try three more. Or ditch them and do something totally different. 

[Jenny in Florida]

36 minutes ago, Selkie said:

IIRC, you're vegan, right? Are you getting enough B12? I'm sure that you and your doctors already have that covered, but I just wanted to throw it out there just in case. I remember that you've talked about neuropathy and coordination problems, and those can be symptoms of a B12 deficiency.

 

Yep, got that covered. 

[PeterPan]

38 minutes ago, Selkie said:

B12 deficiency.

@Jenny in Florida can run the labs herself through healthcheckusa.com Not too expensive. I've done it. Or run them through the psych.

The type you need can depend on your genetics. If she has her genetics, she can run them through knowyourgenetics.com and find the right type to take for her.

[ktgrok]

Do the people investigating this also know about your neuropathy, etc?

Are you seeing a good neurologist?

[Jenny in Florida]

7 minutes ago, Ktgrok said:

Do the people investigating this also know about your neuropathy, etc?

Are you seeing a good neurologist?

 

Yes, everyone is aware of the assorted issues (and the wide variety of medications I'm taking to manage them).

In terms of a "good" neurologist, I haven't a clue how to answer that. I'm on my third one, having ditched the first two after getting frustrated with rude/incompetent staff and inattentive doctors. When I actually get to see either of them, I like the doctor and the MA. 

Interestingly, I saw a different neurologist while in the hospital and decided to look him up. He has a good number of reviews online with comments almost identical to the things I don't like about my current doctor and an identical star rating. (Among other tests, I had an EEG in the hospital on Saturday and am still waiting for results.)

So, I'm doing the best I can.