How to cope with the treatment?

MuddyBoots · 03:29 PM

I'm especially dealing with some trouble some akathisia right now. I have taken everything for akathisia I can and even some meds I can't (took valium which is supposed to be my go to but 10mg didn't touch it so I took .5mg cogentin which is for emergencies only because it makes me stop peeing then I got desperate and took 2mg klonopin which I'm really really not supposed to do).
I'm on haldol injections so it's not like I can just stop taking the pill I'm stuck with this along with painful dystonia and tremors for a few more weeks then I'll probably have withdrawals.
I talk to my NP tomomrrow but she's not much of a help usually. She's pretty incompetent but it's all my insurance will get me for now.
How do I cope with this? Am I supposed to go back to the hospital? because this was the original reason I was feeling suicidal I now realize and idk if I can take weeks of this but if someone has some tips for getting through the next few weeks or ideas for meds that I could mention to my NP tomorrow to help I sure would love to hear them.
I can't take propranolol because it also makes me stop peeing and I am allergic to amantadine

Edit: Hallie says requip helps her with risperdal-induced akathisia and on youtube Dr. Tracy Marks says clonidine could help (and I've been on clonidine in the past for ADHD type stuff so I know it shouldn't do anything nasty right off the bat).

*Beth* · Jan 20, 2022, 02:51 PM

I feel so bad for you, Sapien, and I really wish I had some great advice to share. It's unfortunate that you have a crappy NP. My first thought is that if returning to the hospital will expedite getting help for the akethesia, maybe that's the route you should take.

HALLIEBETH87 · Jan 20, 2022, 11:49 PM

I really hate this for you. I know how miserable and horrible it is

MuddyBoots · Jan 21, 2022, 12:36 PM

UGH! My NP made no med changes, just said she'd talk to her supervisor and to call back and make an appointment in 3 weeks.

*Beth* · Jan 21, 2022, 02:57 PM

Well, that seriously SUCKS.

Rose76 · Jan 27, 2022, 02:54 AM

I've experienced akathisia several times. It's horrible. The last time I had it, it was due to anemia. Pramipexol helped. I think that's actually an anti-Parkinson drug.

I see your dilemna. You can't undo a shot.

You would have every right to go inpatient with this kind of distress, if there's an inpatient psych facility near you. Then they could monitor you, whille they treat the akathsia.

I'm so sorry you're suffering with this. Maybe the Haldol has done you some good, but you have to ask yourself if it's really worth it.

MuddyBoots · Jan 27, 2022, 01:13 PM

Yeah, it's definitely not worth it. I usually get manic and january and while I did not this year I was still hospitalized because of the side effects causing suicidality, and that IP visit wasn't really productive as I'm still in the exact same spot. My next NP appointment is the 18th but I'm scheduled for my next injection next Friday. I'm not going to get the injection, to say the least.

Rose76 · Jan 27, 2022, 06:16 PM

Good for you, Sapien. It would not be worth it to me. Haldol is a very old drug. There are newer ones with less awful side effects. IMHO no drug is worth akathisia, or tardive dyskinesia, or dystonia. Your brain could be damaged permanently by drugs with those side effects.

IMO your provider is in over her head. I'm sorry you're not being treated by a real psychiatrist. I believe nurse practitioners should only manage stable patients, which you are not.

You need and deserve treatment to relieve these awful side effects - now.

sarahsweets · Jan 28, 2022, 03:15 AM

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Quote:

Originally Posted by Sapien

I'm especially dealing with some trouble some akathisia right now.

Is this similar to Tardidtive Dythskenisia (SP)?

MuddyBoots · Jan 28, 2022, 11:13 AM

Quote:

Originally Posted by sarahsweets

[FONT="Georgia"][SIZE="5"][B]
Is this similar to Tardidtive Dythskenisia (SP)?

Kinda, in that they both fall under hte category of EPS (Extrapyramidal symptoms) and count as movement disorders. TD (Tardive Dyskinesia) is more involuntary movements though and akathisia is essentially RLS (Restless Leg Syndrome) but your whole body and all day. They're both caused by lack of dopamine, I believe.

Rose76 · Jan 29, 2022, 06:12 PM

Quote:

Originally Posted by Sapien

Kinda, in that they both fall under hte category of EPS (Extrapyramidal symptoms) and count as movement disorders. TD (Tardive Dyskinesia) is more involuntary movements though and akathisia is essentially RLS (Restless Leg Syndrome) but your whole body and all day. They're both caused by lack of dopamine, I believe.

You present a very good explanation above. I've read a lot about it. Seems to me your brain works pretty good. The drug I mentioned above treats Parkinson's by stimulating dopamine. It was ordered for me to treat nightime RLS from anemia. It helped.

I worked as an aid in nursing homes back when many patients had tardive dyskinesia from having been kept quiet with antipsychotics - Haldol, Thorazine or Mellaril. That's not allowed as much any longer. I think TD is horrid. I'm shocked to see those TV commercials touting new drugs claiming to treat TD, so psych patients can go right on taking their "important" psych medication. I think this specific class of drugs - antipsychotics - is way, way overused. Several were ordered for me to treat my basic depression. They were useless for me.

Prescribing antipsychotics is what keeps a lot of psychiatrists and their stand-ins employed. They are ordered to a degree that is utterly ridiculous. I know this first hand, as a patient and as a nurse. Twice I refused to administer antipsychotics for situations that I readily handled through some appropriate TLC. Has anyone told you that long term use of antipsychotics can cause you to someday develop Parkinskn's Disease? Someone dear to me has taken antipsychotics for decades and now has Parkinson's. It may not have been caused by the drugs, but it may have been. No one can tell. Google it for yourself.

The psychiatric professions have done a thorough job of convincing distressed people that they can not hope to learn to control their behavior without dangerous drugs because they have damaged brains. IMO, often it is not the brain that's been damaged . . . but the soul. I am not religious. I use "soul" as a metaphor for one's personhood. Neither am I a big believer in the effectiveness of weekly visits to a therapist that go on for years and years. At some point, becoming mature means recognizing that I may have an approach to life that isn't working for me. I may need to figure out a different approach to living in this world that is a tough place. I may have to stop being mad that life is as it is. That's what I'm working on. It is hard, I'll admit. Life can be painful and unfair. I haven't found any med that fixes that. I take an antidepressant that I find helpful, but it doesn't "undepress" me. It gives me more energy to keep striving, which is what life is all about. Eventually, enough effort tends to pay off.

BTW - I agree with you about going inpatient. Often it's just confinement to prevent self-harm, which is all it is intended to be in our system. On the other hand, it can be restorative once in a while, especially when you find yourself among supportive peers. You've tried it all. Depend mostly on yourself and your own strength, which is greater than you realize. I think most psych problems are problems of socialization. (True in my case.) Look for ways to interact usefully with other people. That is the only thing that makes life worthwhile.

MuddyBoots · Jan 29, 2022, 06:43 PM

Quote:

Originally Posted by Rose76

IMO your provider is in over her head. I'm sorry you're not being treated by a real psychiatrist. I believe nurse practitioners should only manage stable patients, which you are not.

Going off of this, its a shame there seem to only be actual psychiatrists in hospitals around here. My entire community mental health center is just nurse practitioners, which is unfortunate because most patients at my community mental health center are severely mentally ill (if we were higher functioning we'd probably go elsewhere, I wish I had a better way of wording that).
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My NP hasn't done jack for me in the year I've seen her other than hospitalize me when I needed a med change. She put me on vraylar to try and prevent a hospitalization, but that gave me akathisia too and didn't do anything (and I was hospitalized anyways). At least Haldol stops the paranoia/hallucinations/mania. I'll take Haldol over vraylar any day. But there are other options. I think I'm going to try med free for a bit. I'm sick of being poisoned.
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I'm angry that I didn't just agree to take the pill before the injection. That was a bad manic episode and they were giving me IM Haldol 3x a day because nothing else worked. I've tried all the atypicals (except the new new ones that my insurance won't cover) and the only one that worked for more than a year was Clozaril and there's too much red tape for me to navigate and be able to actually get my prescription on time regularly, and boy do the withdrawals suck. Not a fan of the weight gain and sleeping 12-14 hours a day either.

Idk. I'm just venting at this point. Nothing's going to make me feel comfortable until this med is out of my system and I've dealt with the withdrawals.

Rose76 · Jan 29, 2022, 09:59 PM

I'm sorry you're suffering these physical symptoms, which I know are hard to endure.

It's getting hard to connect with an actual psychiatrist all over the country. It's getting so they basically just supervise (sort of) the PAs and NPs. Basically they let them order whatever they want. Ordering meds makes them feel like real doctors. They're just throwing everything against the wall to see what sticks. Not a lot of great science behind it. Even with bodily medical issues, you get a "provider," and only see an actual MD when you are acutely ill and need a specialist. I think it's insurance driven - cost containment.

Your issues sound pretty severe. I'm sorry life is so hard a struggle for you.