Antipsychotics? Car accedent???

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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RLS Ouch
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Antipsychotics? Car accedent???

Postby RLS Ouch » Wed Sep 12, 2018 12:58 am

Hello friends,

6 months ago I was transitioning from Abilify to Vraylar (both antipsychotics) when I began to experience RLS. My psychiatrist suggested the Vraylar molecule is stuck in the dopamine receptor site and it just needs time to release. Anyway my second hypothesis is my spine was injured in an auto accedent that occurred 3 months before I developed RLS. I thought it would be a good idea to let you guys know what happend in hopes of finding out what has worked for you. The guy from the health food store recommended apple cider vinegar to detox the brain. Perhaps that's what I need to do. Any suggestions there? Definitely chime in if your story sounds similar because if nothing else I can gain hope by hearing how it's going for you and your discoveries recovering from this thing. Thank you.

ViewsAskew
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Re: Antipsychotics? Car accedent???

Postby ViewsAskew » Wed Sep 12, 2018 5:24 pm

Either could be the reason.

Not sure my story will help at all. I have primary, inherited RLS. It was made much worse, however, by taking a dopamine agonist. In my case, I was able to decrease the RLS some when I stopped taking it, and over years it has slowly decreased a bit at a time, but never close to original levels. If I were stronger emotionally and didn't have any responsibilities, I'd stop all medication for several months and see what would happen. It sounds terrifying, however!

Given what we know about how some substances can radically alter the brain long term, I have no doubt the same applies here. Everything we take for RLS has the ability to change our brain in ways we do not understand (as well as ways we do understand). There is a lot of info from the addiction researchers related to dopamine - I'd guess it would apply. Exercise might be a good place to start. Diet and meditation also might help, but meditation can be tough if you have RLS.

I know very little about what the current science say, but am skeptical that apple cider vinegar will be of much help...but that is just a guess. I cannot see how it could affect the brain given it cannot get into the brain. But, again, I have no real knowledge about it. Limiting sugar (or eliminating it) as well as eating more cleanly and not doing things that can further throw off the balance are things suggested by some, including doctors, but I don't have enough knowledge of the actual research to know how much they help.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

RLS Ouch
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Joined: Mon Sep 10, 2018 12:52 am

Re: Antipsychotics? Car accedent???

Postby RLS Ouch » Thu Sep 13, 2018 7:51 am

Thank you for the thoughtful reply. I am really having a bad RLS night. Feels like being beat to sh** by Mohammad Ali. Usually I take a half of Meripex and last night I decided to take a whole one because I began to feel I was short changing myself and could use some relief so I ended up having a pleasant night. What I dont like is I'm tired during the day, increased labedo, and I'm compelled to shop on Amazon. So tonight I'm trying to work my way down back to a half and it is hard. The other tool I've been using is acupuncture. However I believe the number one reason why I had been able to be on such low dose is because I quit smoking. The more meripex I take the more RLS I have during the day. Wich my doctor's response is to take more Meripex. Do you know the science behind this? Why Meripex makes RLS worse? I just want this to go away and what I'm discovering is the very drug used to relieve RLS makes it worse so I feel like I'd be going backwards if I take more. Anyhow thanks for your reply.

Rustsmith
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Re: Antipsychotics? Car accedent???

Postby Rustsmith » Thu Sep 13, 2018 6:03 pm

Two very important points in your last note that are major indications that you need to be completely off of mirapex:

1. Your compulsive shopping and increased libido are indications that you are experiencing dopamine agonist triggered compulsive behaviors. This type of side effect needs to be brought to your doctor's attention immediately because you need to switch meds NOW! If your doctor keeps on with the suggestion of increasing the dose, find a new doctor. Do not delay. These compulsive behaviors can destroy marriages, finances, families, etc. But kudos for recognizing this in yourself. Many who experience this are not aware of the changes that have occurred.
2. Your statement that taking more mirapex is increasing your symptoms during the day is an indication that you are probably experiencing augmentation. This is a side effect of dopamine agonist meds that is specific to RLS and a huge number of doctors do not know anything about it. Take a look through our Augmentation forum, watch the Foundation's augmentation video, read through any literature on augmentation that you can find. Educate yourself so that you can try to educate your doctor. If he/she persists with the idea of increasing your dose, once again, find a new doctor and this time it should be one who is familiar with treating RLS patients with augmentation. That can be a problem since even a large number of neurologists do not have this type of experience.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

RLS Ouch
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Joined: Mon Sep 10, 2018 12:52 am

Re: Antipsychotics? Car accedent???

Postby RLS Ouch » Fri Sep 14, 2018 9:31 am

Thanks for your concern Rustsmith. I love people like you who look out for people's best interests, so I opened up the lines of communication with my doctor after reading your post, and she suggested I make an appointment to go see her so I did. Now my question is what else is there outside a dopamine agonist? Also I'm not interested in opiates for obvious reasons. One more question floating in my mind is what I can take for energy during the day? Today I'm committing to no caffeine and we'll see how I sleep tonight. In the end I'm hoping the RLS goes away. Perhaps the dopamine channels were clogged by the antipsychotic? That's my physicians theory. So of course what comes to mind is diet and exercise. Know of any good diet plans? Any suggestions on what to ask my doctor? So if I want RLS to go away would taking a dopamine agonist be the thing to do? If it makes it worse then that doesn't make sense. And by worse is I get it during the day. Everything seems to be dose dependent so I've been keeping the meripex dose very low. If anybody out there has any suggestions please chime in. Thanks for all your help. And I'll be praying for everyone out there for relief from this condition.

Rustsmith
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Re: Antipsychotics? Car accedent???

Postby Rustsmith » Fri Sep 14, 2018 11:47 am

These days, the RLS experts are starting to recommend that the alpha-2-delta ligand meds (gabapentin, Horizant and Lyrica) should be the first line of treatment of RLS rather than the dopamine agonists like Mirapex. These meds do not work for everyone, but they function very differently from the dopamine agonists and the two antipsychotics that you mentioned.

As for diet, if you type diet into our search function (upper righthand corner of this page) you will find many discussions on the topic. Most point to diets that are based on some type diet that restricts carbohydrates. They come by many names, such as caveman diet or keto. Some find these help their RLS, others don't. But either way, moderate exercise and a low carb diet should help to some degree.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
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Re: Antipsychotics? Car accedent???

Postby legsbestill » Sat Sep 15, 2018 10:32 pm

There is some suggestion that the alpha-2-delta ligands work less well for those who have been through augmentation (although they do work for many). They are well worth trying however.

I have seen some people report that weight lifting can be helpful for rls and many, many variations of diet recommendations including fodmap, low oxalic acid, keto, vegan, reduced sugar, carbs, dairy etc etc. It is definitely worth experimenting with diet.

For daytime well being, I have found a huge improvement since I started taking dipyridamole (125mg daily) although this is very much off label for rls. I also found ldn (I titrated up to 4mg over a few months) helped me feel much better during the day.

QyX
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Re: Antipsychotics? Car accedent???

Postby QyX » Wed Sep 19, 2018 4:37 pm

Antipsychotics can cause RLS (as a side effect) or worsen a pre-existing RLS.

Based on my experience with antipsychotics (have taken them for 8+ years) and my own RLS disorder I must say that antipsychotics are EXTREMELY bad for RLS and I would look talk to your doctor if there is any possibility to stop taking antipsychotics at all and look for other drugs who do not cause RLS symptoms or do not worsen a maybe pre-existing RLS that is now beginning to manifest itself.

In my opinion antipsychotics are a real poison when you have RLS and only should be taken when you have absolutely no other choice.

In my experience super low doses of stimulants (Methylphenidat 1 mg, Dextro-Amfetamin, 0,25 to 1 mg) can suppress RLS symptoms caused by antipsychotics. Unfortunately most patients don't have access to those stimulants and you need a little bit of tolerance to them before you can use stimulants as a suppressor for antipsychotics RLS side effects.

I wrote about that in great detail in my pharma diary. Also potent antiepileptics can suppress RLS side effects caused by antipsychotics but in my case they did not work as good as stimulants. In the end I used a combination of both but it was a tricky game. In the end antipsychotic side effects got so bad that I had no choice but to withdraw from the antipsychotics.

badnights
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Re: Antipsychotics? Car accedent???

Postby badnights » Mon Sep 24, 2018 7:13 pm

@RLS ouch
You might have more energy after stopping the pramipexole - it caused extreme daytime sluggishness in me., I hope your goal is to stop the pramipexole.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

QyX
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Re: Antipsychotics? Car accedent???

Postby QyX » Tue Sep 25, 2018 9:45 am

badnights wrote:@RLS ouch
You might have more energy after stopping the pramipexole - it caused extreme daytime sluggishness in me., I hope your goal is to stop the pramipexole.



Yes, I can only agree on that. Even with only medium RLS, I view dopamine agonists more like emergency drugs, just like Benzodiazepines when you simply can't sleep.

Just yesterday I read a study that longterm about 90% of the patients experience augmentation on dopamine agonists.

Considering this, it is simply no question, at least for me, that daily use of dopamine agonists is a no go and only should be considered if you tolerate them extremely well.

badnights
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Re: Antipsychotics? Car accedent???

Postby badnights » Wed Sep 26, 2018 4:19 pm

QyX can you please tell me the reference for that study? tx
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Re: Antipsychotics? Car accedent???

Postby Rustsmith » Wed Sep 26, 2018 4:49 pm

Beth, this probably isn't the paper that QyX referred to, but it indicates a augmentation rate of 7% per year for pramipexole that continued throughout the 10 year study.

https://www.sciencedirect.com/science/article/pii/S1389945710003710
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Antipsychotics? Car accedent???

Postby badnights » Fri Sep 28, 2018 3:26 am

Thanks Steve. I've got that one, and it's useful. QyX's reference seems to indicate a more dramatic augmentation rate. It would be a good paper to wave in the faces of recalcitrant doctors.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

RLS Ouch
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Joined: Mon Sep 10, 2018 12:52 am

Re: Antipsychotics? Car accedent???

Postby RLS Ouch » Sat Sep 29, 2018 6:48 am

Believe it or not antipsychotics are supposed to balance out the brain chemicals for people with psychosis. In some cases blocking dopamine can lead to dysfunction in the way those chemicals are released even after the medication is discontinued. RLS and other neurological disorders can result. What needs to happen for my brain to function properly is the dopamine receptors needs to realeace the antipsychotic. It's been 6 months sense I stopped the antipsychotic and still left with rls every night. I take a half of a .125 maripex and 1500mg of gabapentin at night. Any ideas from the group as to how to get my brain to balance back out. I can see there are some very educated people around here and I feel super lucky to be able to pull from that group wisdom so thank you from the bottom if my heart in advance. I want to point out I'm not a doctor and definently not here to discourage anyone from taking antipsychotics because they are definently life saving.

ViewsAskew
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Re: Antipsychotics? Car accedent???

Postby ViewsAskew » Tue Oct 02, 2018 9:19 am

RLS Ouch - am much too tired to answer tonight, but wanted to say I saw the post and will answer soon.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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