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Magnate
Member Since Apr 2009
Posts: 2,933
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#1
Hi All,
I went back on meds about a year ago to address symptoms that were making it hard to work. I am extremely med sensitive and about 7 years ago I finished up a course of ECT so I could get off meds. I was med free for 6 years but last year decided I needed a little support to make sure I can keep working. I got off disability and don’t want to have to get back on. Anyway, I went through trials of a few meds, had my usual array of side effects and finally landed on Latuda in August. I take only 40mg, and have noticed over the last three days what felt like jaw stiffness. I have been noticing that I also find that my tongue seems to get stiff inside my mouth and the front of my throat, or the space underneath my tongue gets stiff, and I feel like my jaw, tongue and mouth occasionally make very subtle movements. I can relax everything when I notice it happening, but it has increased to many times per hour. I don’t know if it is just stress, or the beginning of TD. I see my p-doc on Monday morning. Thoughts? |
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bizi, Fuzzybear, RoxanneToto
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bizi
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Legendary
Member Since Sep 2019
Location: Portland
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#2
You should report this to the pdoc forthwith. Today. After hours. Whatever it takes. She needs to know.
__________________ When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield |
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*Beth*
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Silver Swan
Member Since Jan 2008
Location: USA
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#3
Yes, I agree: it's good you have an appointment for Monday but I think they'll want to know about this before that as it might become permanant the longer you take it.
__________________ Wellbutrin XL 300 mg Loxapine 50mg Ingrezza 80 mg Ativan .5 mg 2x/day Propranolol 20 mg 2x/day Mania (December 2023) Mixed episode/Hypomania (September 2023) Depression, Anxiety and Intrusive thoughts (September 2021) Depression & Psychosis (July/August 2021) Mania (April/May 2019) |
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bpcyclist
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*Beth*, bpcyclist
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Magnate
Member Since Apr 2009
Posts: 2,933
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#4
I can text her tomorrow, but if I am just reacting to stress, I would feel really bad about bugging her on a weekend.
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bpcyclist
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bpcyclist
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Silver Swan
Member Since Jan 2008
Location: USA
Posts: 16,481
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#5
I've never had anything like what you describe because of stress.
__________________ Wellbutrin XL 300 mg Loxapine 50mg Ingrezza 80 mg Ativan .5 mg 2x/day Propranolol 20 mg 2x/day Mania (December 2023) Mixed episode/Hypomania (September 2023) Depression, Anxiety and Intrusive thoughts (September 2021) Depression & Psychosis (July/August 2021) Mania (April/May 2019) |
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bpcyclist
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*Beth*, bpcyclist
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Legendary Wise Elder
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Location: Tennessee
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#6
I'd call/ text first thing in the am. This isn't anything you should put off at all. You would not be bothering her.
__________________ Helping others gets me out of my own head ~ |
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bpcyclist
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*Beth*, bpcyclist
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Legendary
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#7
__________________ When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield |
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*Beth*
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catches the flowers
Member Since Jul 2019
Location: Downtown Vibes, California
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#8
I agree with everyone else. What you've described sounds like TD. I mean, it sounds exactly like TD.
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bpcyclist
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bpcyclist
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Neurodivergent
Member Since Mar 2012
Location: Western US
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#9
I have TD. I developed it after being on double antipsychotics for a number of years. It's annoying as hell when I can't stop tapping my feet and spreading my toes out, or my eyelids start twitching, which looks really weird in a magnified mirror. But I live with it--I don't want more meds, and it's not so bad that I feel I absolutely MUST take them. I also have hand tremors that make eating soup really interesting.
__________________ DX: Bipolar 1 Anxiety Tardive dyskinesia Mild cognitive impairment RX: Celexa 20 mg Gabapentin 1200 mg Geodon 40 mg AM, 60 mg PM Klonopin 0.5 mg PRN Lamictal 500 mg Levothyroxine 125 mcg (rx'd for depression) Trazodone 150 mg Zyprexa 7.5 mg Please come visit me @ http://bpnurse.com |
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*Beth*, bizi, bpcyclist
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bpcyclist
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Legendary
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Location: Portland
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#10
Quote:
After 12 years of Abilify, I finally developed dystonia, arms and legs shaking. Stopped it rt away and it fortunately has not reappeared. These medicines are powerful but they are not without neurologic risks. __________________ When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield |
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Magnate
Member Since Apr 2009
Posts: 2,933
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#11
It seems better today...
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bpcyclist
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bpcyclist
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Monster on the Hill
Member Since Sep 2020
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#12
I'd still call asap even if it's better today. You don't want to mess around with possible TD.
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bpcyclist
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*Beth*, bpcyclist
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Magnate
Member Since Apr 2009
Posts: 2,933
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#13
P-doc says it’s not TD but is is a dystonic side effect that could develop into TD. She is taking me off Latuda and going to try Abilify to address that and my severe lack of motivation.
If that doesn’t work she wants to do gene testing to help determine what meds may be good for me. I feel like I have tried sooo many meds snd get side effects on such low doses. I am frustrated. |
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*Beth*, bizi, bpcyclist, ~Christina
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*Beth*, bizi, bpcyclist, ~Christina
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catches the flowers
Member Since Jul 2019
Location: Downtown Vibes, California
Posts: 15,701
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#14
I've had dystonic reactions to both Latuda and (especially) Abilify. From what I've read here, it's common to have dystonic reactions and especially akathesia from those 2 meds. Medication is so difficult when you're sensitive to side effects, even at low doses. I am, too. It seems that the best way to handle it is to creep up slowly on the dose. Some pdoc prescribe these huge doses right off the bat and of course, the side effects are daunting.
Anyway, I hope the Abilify works for you. Might be interesting to do the gene testing, either way. __________________ |
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bizi
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bizi
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Magnate
Member Since Apr 2009
Posts: 2,933
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#15
I have not had a “therapeutic” dose of anything I have tried so far. I only got to 40mg of Latuda and will start with 2mg of Abilify.
It seems that after a few weeks of low doses, I develop side effects. That’s why the last time I was on meds, I finally scrapped the whole thing and got ECT. I did so well afterwards that my old P-doc began to question my diagnosis and for a few years, I walked around thinking I didn’t have bipolar. My new T has helped me figure out that I actually do have it and that I was fortunate to have experienced stability for a good while. I do not ever want ECT again so I am trying meds with a new p-doc who I have been with for about a year and so far she has been very conservative about dose, using one med at a time and seems to really listen to my needs. |
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bizi
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Moose72
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catches the flowers
Member Since Jul 2019
Location: Downtown Vibes, California
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#16
I really hope Abilify works out for you. It sure helps a lot of people.
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bizi
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Bizi is bizi
Member Since Nov 2005
Location: cajun country
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#17
Abilify was so expensive when I was on it a few years ago. It eventually caused me to get hypomanic almost immediately. There was a discount card that was accepted so I was able to get the med for $20 instead of $1,400.
But my insurance company thought I was paying out of pocket for it, so my deductible was met quickly that year. So I could have therapy weekly at the time. WE are in the same situation because I was inpatient We have met our deductible, so I should take advantage of weekly tdoc sessions. anyway good luck with abilify! bizi __________________ 150mg of lamictal 2x a day haldol 5mg 2x a day 1mg of cogentin 2x a day klonipin , 1mg at night, 4-5 peri-colace for chronic constipation multi vit,, vit c, at noon, tumeric, caffeine at noon PRN Remeron 15mg at night, zyprexa10mg under tongue, requip2mg. |
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