[sarahsweets]

Hi everyone and apologies for the ghosting you all. I have been taking geodon, an antipsychotic for 15 years and my old psychiatrist never assessed or even told me about tarditive dyskinesia. In fact I didn’t know that for me, the AP should have been a short term thing getting me stable. They put me on it in the hospital and I never stopped. Over time I developed odd movements and fidgets that even my adderall couldn’t control. Well that went from mild to severe over time and in the last three months has prevented me sleeping in bed with my husband or even driving safely. Officially it’s TD and I hope it’s not permanent. There is a new medication that treats this condition that of course required a fight with my insurance company.(ingrezza) and in the Meantime I was prescribed Klonopin and Ativan while I weaned off the AP. I didn’t like feeling like a zombie.

On top of that I didn’t realize that Geodon had been treating my insomnia for years and I hadn’t taken any medicine for sleep in about 10 years. Once I was weaned off Of it I experienced the most horrible insomnia I’ve ever experienced in my life. Seriously I was riding the crazy train. I was really questioning reality. I say that not to offend anyone but because it’s the only way I can think of to describe how I was feeling.
Uncontrollable, tears and crying, horrible moods and no sense of day or night. And it went on for days.

My psychiatrist told me the Geodon was sedating and probably treating my sleep issues so she prescribed restoril after I tried ambien. I was terrified of the Ambien because I already sleep walk and talk. The restoril worked OK but my psychiatrist decided it was too many benzodiazepines( I also was done with the Ativan)prescribed trazodone for sleep.

I have a sleep study scheduled for tomorrow at 8 PM. It was originally scheduled due to the sleepwalking and me wanting to take an anti-smoking medicine called Chantix. The sleep doctor already told me that was a crazy idea no way should anyone bipolar take it but he agreed I needed a sleep tudy anyway. Now I’m worried because the insomnia is more of an issue than the sleepwalking and I haven’t consulted with him since the first time although I tried to tell the office and asked them to relay the message.

The good news is the $6000 medication ingrezza was approved and I got the starter pack for zero dollars and I just took the first dose tonight. The side effects in particular are insomnia so I didn’t want to take anything else for sleep with it hence I am updating everyone here at 110am. I just want to apologize because I’m usually an active member and try to be responsive to most people. I don’t like ghosting or ignoring private messages or not participating. I thought I would update everyone not to vilify geodon but just to make others aware of antipsychotics and their long-term effects.
I’m doing so much better now. I have high hopes for the Ingrezza.

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[eskielover]

I sure understand the rough time you are going through. That TD can be horrible. My PDOC prescribed Thorzine back in 1999 before my neck fusion surgery to "calm me down". At the same time, my MD was prescribing me compozine for how sick I was getting from the continuous migraines I was having (my diagnosis was major depression at the time). Like you, I just kept being prescribed the meds & taking them. That time period was kind of a black Hole for me & not sure how long after my surgery it hit (guessing 6 months) but suddenly I couldn't get food from my plate to my mouth & I couldn't even walk from my bed to the bathroom without help. It seemed like this lasted forever before I went to urgent care about it but probably not very long. They recognized that the thorzine caused TD like this (I was actually wondering if I had Parkinson's when I went). I stopped the Thorzine & after a month I was still the same. Finally went back to the neurologist who diagnosed my neck problem & he caught the compozine was still keeping the TD happening. He prescribed a different med but it took months after that for me to be able to walk without help again. It was definitely a very scary time of my life. Glad I don't remember much about it honestly.

Hope your sleep study goes well & you find some good answers that will help you get back to more normal sleep & that the TD does go away with time like mine did.

[divine1966]

Sara! I was thinking about you. I hope they get this under control very soon. It sounds stressful but I am glad you are working on getting help

[unaluna]

Sarah, im sorry you've been going thru all this. Hope the new meds help.

Sending hugs your way Sarah. I'm sorry you're having a rough time.

[TishaBuv]

It’s good to see you back, and I hope the sleep study helps, and you will be alright soon.

[downandlonely]

Welcome back Sarah. I hope the tardive dyskinesia goes away. I believe it is usually temporary.

[*Beth*]

Welcome back! My pdoc suspects that I have TD from long-term use of AP's. I'm scheduled to see a neurologist.

I took Geodon at one point and found it to be a weird med. It made me tired all day, then gave me insomnia at night. I didn't like it.

[Soupe du jour]

I'm so sorry you got TD and hope it will disappear quickly with your medication changes. Geodon gave me evil akathisia which I lived with too long. I don't know how it was or still is for you, but Geodon was the hardest medication I was ever weaned off of, but I managed. I had been taking 160 mg per day for seven years.

[sarahsweets]

Originally Posted by Soupe du jour

I'm so sorry you got TD and hope it will disappear quickly with your medication changes. Geodon gave me evil akathisia which I lived with too long. I don't know how it was or still is for you, but Geodon was the hardest medication I was ever weaned off of, but I managed. I had been taking 160 mg per day for seven years.

Oh my goodness thank you thank you thank you for sharing that! That’s nearly exactly what was going on with me. 15 to 17 years of this medication when really it was meant to stabilize me in the hospital. It was harder to come off than of any medication including benzo‘s that I’ve ever tried. And I withdrew from alcohol on my own like an idiot but I was a heavy drinker and an alcoholic all day long and this was harder even than that.

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