Seroquel - Restless Feet

[Bear13]

So one of the reasons I wanted to stop taking Seroquel before and try something else, is that I sometimes have this feeling in the bottom of my feet, that make me constantly need to rub them on something or walk to get rid of the sensation.  Oddly enough, if I think about it, it usually occurs, but sometimes it will wake me up in the middle of the night, and I have to walk around.  I'm on a relatively low dose, 200mg, at bedtime, but it can be quite frustrating....  I also notice that I'll wake up with my nose stuffy and can't breathe, so it sets off a mini panic attack.  At 2am, that can be a bit disruptive.....  any suggestions or ideas?

[ILADVOCATE]

Yes they would be concerned if you asked to go off medications because they would know symptoms would return. Its a matter of knowing why you need medications as well as just taking them. Actually I'm not in a study. My psychopharmocologist supervises me taking the glycine and is writing up the results as a standard case study. I wouldn't advise someone going into an actual drug study because its a fixed dose with no adjustment and you may get a placebo or no medication. As I said my psychopharmocologist spoke to a provider agency and they may make further reccomendations for psychiatrists to use this compound as an adjunct (in addition) to a standard antipsychotic, the reason being that I'm the first person to recover with it by itself. Once a public reccommendation is made by a provider agency then things may change. I can't post more until then but by then it will be public knowledge.
   As for the Seroquel as I said 300 mg. is a standard effective dose. 200 mg. really won't work as well for you but if it is keep it there. Have them prescribe you a side effect pill to help the restless legs syndrome. And I'll detail more on what is going on with this new compound in study when there are some officially stated reccomendations. For everyone. My word does not mean much by myself and I'd rather a provider agency make the statements and psychiatrists as a whole come to an understanding about it but you will hear more then.

[Bear13]

thanks for your words, it's helpful.. i wish i too could be part of a study, but it's tough finding a pdoc that would even recommend something like that... it always seems that when i tell them i don't want multiple meds and would like to eventually get off meds altogether, they get a little weird.... it's frustrating.  the best pdoc i ever had left the state so i was stuck with a new guy who (gotta give him credit) tried the Geodon because I was complaining about the weight gain, skin problems, and the RLS... after that particular experience he recommended me on an increased Seroquel dosage (about 300 vs. the 200 i currently take), and I was resistant...  the 200 treats the symptoms, but it goes against the feeling I have of the "less is more" mentality.  I just hope the new pdoc is more understanding and willing to work with me on lowering the dose to see if it's just as effective..... sigh.....

[ILADVOCATE]

That's true. That's what they thought at the time. For myself as well. But people can experience akathesia for all of them except for Clozaril (the fact that I experienced e.p.s. from that is incredibly rare). That will be the advantage of the next generation antipsychotics, that's one thing among many they do not cause. As for what you experienced on Geodon actually I would never reccomend that medication. I remember at the time it was almost not approved because it caused abnormal heart rhythms but after putting a boxed warning about it, it was with this restriction. I got heart palpatations from it and got off it right away. I'm not sure if a speeded up heart rate is part of catatonia. But abnormal heart rhythms are a potential effect of Geodon. That's the only anti-psychotic with this particular warning. But it was used because it was less likely to cause weight gain. But now Abilify is used instead because the same thing applies and that is perfectly safe. But you've tried that. If you want an antipsychotic without e.p.s. Clozaril is the only one that almost always doesn't cause it. But the side effect profile is relatively unfavorable and it requires weekly bloodtests but for some people its an option.
   So you are in the same position I was as regards e.p.s. back then. And what I take is now extremely effective. But again its still in Phase II study so its not an approved medication but a compound. But when public statements are made about its usage as adjunct I'll post that because than psychiatrists as a whole will have made a more concrete decision about its incorporation into the treatment regime as it is available. I wouldn't post where until then. In the meantime the study drug LY2140023 is showing favorable results but that is years off. But when that is approved (and any other glutamate antagonist like it) you won't have to experience this again. Look it up if you want (the New York Times article explains it easy to understand terms). All I can say for sure is treatment will improve. I can't guarantee my recovery rate but I know no cases of e.p.s. were found. I sent people the link to the actual study. Its a whole new mode of treatment. Stay on what you are on and hang in there. Better things are in the works.

[Bear13]

I should also add that the reason for the switch was the RLS feeling I was having.  Geodon was thought to not have those side effects.....  At that point I would have traded that for anything...

[Bear13]

No, I'm pretty sure about the catatonic state.  I couldn't move, I couldn't get out of bed to save my life, pretty much was out of it for two days... didn't hear the phone ring, and couldn't pick it up anyway... and when I did get up, the world went white... heart beat accelerated to the point where I thought it was going to explode in my chest.  I literally laid in bed for two full days before I could even think of getting up... going to the bathroom was a nightmare, it took forever for the room to stop spinning enough for me to move, and when I did start walking, lurching is the best way to describe, I was running into walls.... only when I was laying in bed did I feel any sort of relief.... and then the vision went.  the walls would "pulse"... the pictures looked like some strange Salvador Dali painting, as they were all melting....  I stopped taking the Geodon after that...I was terrified... when I went back to my pdoc, it has been about three days, so I has NOTHING in my system.. I was having rolling panic attacks, was attached to an ice pack which I would lay on my chest just to feel the coldness or had my head stuck in the freezer to breath in the cold air.....he immediately put me back on Seroquel and gave me klonopin to help with the anxiety... it took about a week before I had some semblance to normal... it was horrible.

[ILADVOCATE]

  So stay on the Seroquel then. Geodon has a difficult side effect profile. Its less used for that reason. Are you sure Seroquel put you in a literal catatonic state? Do you mean more you had stiffness and trouble walking which is akathesia because that happenned to me at higher doses of Seroquel such as 400 mg. That is temporary and not of concern. Make sure you know what the terminology you are using means. If you are coping with that dose of Seroquel (200 mg.) fine. Leave it there. 300 mg. is a standard clinical dose. The lower you go the less effectiveness you'll get.
   If you have encountered experienced extreme akathesia on multiple anti-psychotics or have any unusual or abnormal motions then discuss this with your psychiatrist as that might warrant a consult to a movement disorders specialist. But let's take take things one step at a time. If you had experienced actual catatonia your psychiatrist probably would have changed you to Clozaril. If you had akathesia which is more likely and is temporary and it comes and goes throughout the day then that's standard. The phase II FDA study antipsychotic agent I am on glycine may be incoporated into psychiatric treatment as an adjunct and does not cause this and when this is officially documented I'll post that. In the meantime for your reference google "Dr. Javitt, glycine".
  As for insurance issues if your new psychiatrist is appropriate for you that's fine. If you have difficulty with health coverage issues you could ask for more information at your local independent living center. There's one in every county of every state. Here's a list:
http://www.ilru.org/html/publications/directory/index.html

[LeftCoastChick]

Good idea, if I think about it, it magically appears.. I also do some streches before I go to bed most nights, dunno seems to help.

[Bear13]

The RLS (if that's what it is) only started about three months into the Seroquel treatment.  The doctor had me on varying doses (all the way up to 400mg, which put me into a literal catatonic state), so I've been able to manage the symptoms of bi-polar with the 200mg.  I'd like to take it down to 100mg, as I'm of the mind to eventually cut out the meds entirely (I know, I know, meds are probably in my lifelong future), but we have tried a combination of other medications, such as Lamictal, Abilify, Geodon, but I seem to be VERY sensitive to side effects of everything, and after my experience with Geodon, I am seriously afraid of switching to a new medication. The Geodon was such a nightmare of an exeperience (blurred vision, dizziness, etc), that I am reluctant to even have him switch out the meds.....  I have to see a new pdoc in January as my insurance has changed and the doctor I'm seeing now, of course, doesn't take Aetna....  The RLS only seems to happen when I start thinking about it, I'll be laying on the couch and thinking, gee, I hope my feet don't get restless again, and then boom, there it is... so I try not to think too much about it LOL!.....

[LeftCoastChick]

It may go away, so I wouldn't fret, 200mgs at night isn't really a low dose per se. Have you thought about switching a drug so you can drop the level of seroquel, I am on trazadone for sleep. It took me 4-5 days not to be terribly sleepy, but I sleep like a rock normally. When I hit a depression all gloves are off when it comes to sleep, so I add ativan. Ativan will help with the legs at night, and I like it, I only use it when needed. My pdoc said the drugs that are specifically for restless leg syndrome don't always have the nicest side effects, so she wouldn't put me on them. Have you had the RLS since starting the Seroquel, or did it just start when your doses went up?

[ILADVOCATE]

As for side effect pills for temporary movement disorders (extra-pyramidal side effects or e.p.s. as they are called) such as akathesia or dystonia or what you describe as restless legs syndrome, there are generally three classes of medications. And all of them work on slightly different movements as well. The most commonly used are the anti-cholinergics such as Cogentin and Artane. They are effective and the side effects are the usual blurred vision and dry mouth. Beta blockers such as Inderal and Atenolol are highly effective but of course they are blood pressure pills so you tend to feel a bit weak. Benzodiazepenes such as Klonopin are also good but they have a potential for a person to build up a tolerance long term although I've been on Klonopin for 10 years now without a problem, although the dosage had to be raised twice. Benadryl of course is effective and chewable Benadryl is good to bring along if a person needs a maintenance dose of medications for extra pyramidal side effects and runs out of them or doesn't have water to swallow the pills. I always did when I was on standard anti-psychotics.

[LeftCoastChick]

I had restless legs for about 3 weeks, was driving me mad, I was having to take some ativan at night. After reading this thread, I realized I haven't had it in about 2 weeks, so I'm thinking it's just temporary with this drug.  I mentioned if to my pdoc and she said it did happen sometimes when going to a slightly higher dosage, but will subside, so don't fret too much! this too shall pass!

[bernie40]

I had something similar when I was on seroquel - I'm one of these who is sensitive to meds.  It was a bit like restless legs.  The Drs suggested an anti-parkinsons med to alleviate it but like you I wasn't keen on taking yet another medication.

Has your psychiatrist suggested any other medication you could try other than the Geodon or Abilify?

[ILADVOCATE]

If it is not akathesia then it might be worth obtaining a consult to a movement disorders specialist to understand it further and if needed Clozaril could be considered as an option which is highly unlikely to cause any movement disorders temporary or permanent. Be aware that there are new classes of antipsychotics in development that won't cause any of those side effects. A very promising class are the glutamate antagonists. I am on glycine, a glutamate antagonist in Phase II FDA study (for more information google "Dr. Javitt, glycine"). The specific case study on me will be published in a psychiatric journal and I will make the results available then as well as any conclusions they reach from it. For a complete list of new medications in development google "psychmeds123".

[Bear13]

The akathesia is what the pdoc thought it could be originally and said it was not common, but not entirely uncommon in prolonged use of the class of drug I'm on.  We tried switching to Geodon, which was an absolutely miserable experience.  As far as the stuffiness goes, I notice that it happens within a few hours of taking the seroquel... it just sometimes gets really bad in the middle of the night.... I've tried Abilify before and it wasn't effective, especially since I am an insomniac, so the Seroquel has been the only medication that I've tried that has the added sedative benefit without the need for a sleep aid....  it's tough trying to find the right combination of medication, and of course, I'm of the mind that the least amount of medication to treat the symptoms is the best route to go.  I don't like the idea of the multi drug therapy, as the potential for increased side effects is much more likely......  sometimes it seems really, really hopeless.

[ILADVOCATE]

That's hard to understand. If you have the general desire to remain in motion constantly that can be akathesia, a temporary movement disorder and would be treated with a side effect pill. That can be caused by all current antipsychotics although Abilify is less likely to cause it. But what you described sounded somewhat different. As for the other effect you described that doesn't sound like a side effect of Seroquel. I would say that you should obtain a referral to a neurologist and ask about sleep apnea which can be diagnosed during a sleep study. As to what changes would be made in medication afterwards if any, you could discuss that with your psychiatrist.