Cogentin?!?

[LisztLover]

Hello!!

I haven’t had any Mirapex in 4 days!! Yay!! I have just recently been placed on Cogentin...it’s absolutely helping so much with my RLS! No narcotics either! I’m so very grateful!

[involuntarydancer]

WOW! You are off it! Well done that’s fantastic.

Cogentin is an entirely new one on me. I have never heard of it before and certainly not come across it in a rls context. I googled it and it comes up as a Parkinson’s drug but definitely isn’t a dopamine agonist. I will follow your experiences with it with interest. I hope you keep posting.

[Eryl]

The active ingredient in Cognetin is Benzatropine, which has antihistamine qualities, so won't suit everyone. It is also a dopamine reuptake inhibitor.

[LanaCSR in reply to Eryl]

Does that mean it can augment like Requip does?

[Parminter in reply to LanaCSR]

Probably not. It keeps your own endogenous dopamine from disappearing too fast, Perhaps it would work like an SSRI, except replace serotonin with dopamine, and possibly in the same way as Wellbutrin.

Whereas a dopamine agonist hammers the brain into producing more dopamine, and thereby wrecks our already-fragile dopamine receptors, ending with augmentation.

[dontsleepmuch in reply to Parminter]

Does anyone have an idea how it compares to Wellbutrin then?

[nightdancer in reply to dontsleepmuch]

It does not compare to wellbutrin at all.

[Hidden]

Yipee!!!!! That's awesome!!!! (and then in the words of my husband: "cartwheels for all").

I'm SO happy for you!

[LisztLover in reply to Hidden]

Thank you!

[Gonzo123]

How do I get hold of Cogentin

[LisztLover in reply to Gonzo123]

Requires a prescription.

[Wonko_TheSane]

That's fascinating! I, like involuntarydancer, haven't heard of it before - and I'm scanning all scholarly articles about RLS treatment on a weekly basis! Since I'm also having a tremor which might be early Parkinson's, I might be able to kill two birds with one stone, and hopefully I can get a prescription.

I like that it seems to act similar to a reuptake inhibitor, hence enabling the brain to retain some regulation of the dopamine available in the brain instead of just flooding it.

How did it come to your attention? Did you research it yourself, or did your doctor come up with it?

Thanks for letting us know about this, and yay a hundred times for being off DAs and having found help with your symptoms!!

[LisztLover in reply to Wonko_TheSane]

I’m bipolar and had an “episode” last week. Psychiatrist started me on Vraylar. My general concern with an antipsychotic is extra pyramidal symptoms,so I started taking Benztropine also. It’s feeling like a much-needed miracle and break! This symptom-Free ride was unexpected!

[LisztLover in reply to LisztLover]

I’m taking 0.5mg at night

[Wonko_TheSane in reply to LisztLover]

Well, then at least something good came out of the episode for you! Knowing a little bit about bipolar disorder (I have a masters in psychology), I'm really sorry to hear you've got to deal with this on top of the RLS. Maybe there's a joke to be made about, with sleep deprivation being effective for depression, RLS and affective disorders are a pretty optimal combo, but.. no. Since I seem to slowly lose my newfound kratom effects, I'm not in the mood for jokes about it.

Props to you for fighting both conditions and taking charge of your situation, which has led to you finding this! Have you had extrapyramidal effects before? I notice movement changes in myself which remind me of those, even though I never took something suspected to cause them. Maybe another indication I have Parkinson, or an indication for how my/our RLS may work similarly to antipsychotic side effects?!

I hope benzatropine will stay effective for you, please keep us posted!

[LisztLover in reply to Wonko_TheSane]

No, never had EPS, thank God! Those are crazy because they probably don’t go away, from what I understand. Yes! I can’t just get up and go to work, I have to manage my mental side with meds and keeping a good attitude, manage my physical side as with diabetes, eating, RLS, shortness of breath, and manage my spiritual side by doing daily devotional ...etc. It’s a lot of work! Seriously! I appreciate your observations and response!

[involuntarydancer in reply to Wonko_TheSane]

Wonko, I have my fingers crossed that it isn’t Parkinson’s. It must be quite daunting even to suspect you might have it. Are you consulting a doctor about it?

Sorry also to hear the Kratom is losing effect. I stopped taking it a few months ago as it just wasn’t cutting the mustard for me or was requiring quantities I wasn’t really comfortable with. I am having a good patch with my rls at the moment but am not sure if it is my current very complicated treatment regime or the fact that I am going through extremely difficult life events and have large quantities of unpleasant adrenaline surging though me at all hours of the day and night. Seems like the rls just knows when something else is preventing sleep and takes a back seat.

I have tried using nicotine gum to treat emerging symptoms during the night (a tip I picked up on here) and so far have found that symptoms recede within about 20 mins of chewing the gum. Maybe coincidence - or could even be the effect of the chewing motion. It’s too early to say but if you need a boost to the Kratom maybe it’s be worth your trying it.

[Jumpey]

Please keep posting.Your experience with this drug could help us all. So pleased you are getting relief.Wishing you good luck.x

[LisztLover in reply to Jumpey]

Thanks so much!!

[rls_optimist]

That's good news. I hope you continue to get RLS relief with this medication. Apparently, it is no longer sold under the cogentin brand name, but may be available as a generic benzatropine. (Maybe that's only relevant to th USA). Also, here's a precaution from MedlinePlus:

"talk to your doctor about the risks and benefits of taking benztropine if you are 65 years of age or older. Older adults should not usually take benztropine because it is not as safe or effective as other medications that can be used to treat the same condition"

So proceed with some caution. But keep us posted!

[LisztLover in reply to rls_optimist]

Thanks for the warning! I have been able to stop taking Kratom since starting Benztropine. I will explore this with my doctor next visit. I’ve got a good 8 years before being 65, so, if I get relief, I’m going to go with it...I feel like I’ve suffered enough, right? This has made coming off Mirapex feel like a piece of cake! What’s not to like?

[Higgi73]

Excellent news congratulations

[LisztLover in reply to Higgi73]

Thank you!

[Oscarsaurus]

I am so happy for you ...such good news. I have just had a read about this wonderful drug but unfortunately it was banned in the UK in 1212 so back to the drawing board for me . Once again i would like to say goodluck !!!

[LisztLover in reply to Oscarsaurus]

Why was it banned?

[nightdancer in reply to LisztLover]

It was banned because it is an ergot derived alkaloid, and can cause heart problems, as in hardening of the heart wall, and in the US, there is a med that is similar called Permax, which is not recommended any RLS experts at all now. I think the only country left that would use the Permax is Australia, and they may have banned that over there by now. I was on an ergot derived drug first for RLS, and it was permax. Then me and my doctor found out about the heart issues, and it did not help my RLS one bit, so we stopped it. Also, one of the major side effects of ANY ergot derived drug can give you wicked sinus congestion, in case you get that. Just want you to know ALL about it. rxlist.com is the BEST web site for looking up meds, with detailed drug interactions, side effects, how the drug works, and so on. It can get VERY detailed, so if you are not used to reading about meds, drugs.com is better for the lay person. And, anyone reading this and trying to find info on how this would help RLS, you are not going to find it, because with the Cogentin, it actually might make RLS worse, as someone here mentioned, it would have a lot of the same mechanisms as an SSRI antidepressant. So, if someone told that this one drug alone was great for treating RLS all by itself, I would have to say it cannot, and I am 99% sure of that. I am glad your RLS has been quiet. Would love to know your RLS symptoms when it is bothering you, and the rest of the meds that you take. I studied psychiatric nursing in school, and have had a LOT of experience with bipolar because my father had it, may he RIP. I took care of him for 10 years after I moved back home, plus he had Parkinson's so we dealt with every kind of parkinson's drugs, and what was available for treating bipolar when he was alive. the med that worked his bipolar was Lithium, and every time a doctor would think that it was a good idea to change his meds, we would go thru huge episodes and we had to hospitalize him 13 times for extended stays in whatever state we were in at the time. So, I am VERY glad things are going well right now for you, and that you seem to work very hard on yourself with a good attitude. And, you have diabetes, too! WOW I give you a lot of credit, for sure. I really would like to know how long you were on mirapex, and what dose, and did you stop it cold, or did you wean off of it. You seem to realize that getting off a dopamine med is usually pretty difficult. You have an interesting situation. It also would help to know what other meds you are on, since I just think that something else you are taking MIGHT be helping the Cogentin to work for your RLS. It is not common at all these days to use an ergot derived medication for RLS, it is rather old fashioned for RLS, and we learned a couple of decades ago that it was not preferable, mainly because of side effects, and the heart issues. But as we ALL know, there are no rules to RLS, and what works for one does not help the next 100 people. RLS is a thing we always are looking for more answers. so, DO keep us informed, because your entire situation, as a whole, fascinates me. I can literally say in almost 30 years that I have NEVER heard of this med for RLS. So, if one CAN take it safely, then that is great!

[Wonko_TheSane in reply to nightdancer]

Nightdancer, what makes you say that benzatropine is an ergot alkaloid? There are some which were used for RLS in the past, I agree. I see no reference anywhere, however, for benzatropine being an ergot alkaloid and it seems to be quite different in terms of molecule structure.

[nightdancer in reply to Wonko_TheSane]

rxlist.com I did a lot of reading on it. BUT, I have not slept in 6 nights from pure insomnia, but that is where I got the detailed info. But, I could be wrong. LOL

[Wonko_TheSane in reply to nightdancer]

Well, that may explain it!

Rxlist shows no such reference either. I think you confused it with pergolide and the like which carry those risks.

May you sleep again soon!

[Wonko_TheSane in reply to LisztLover]

Just to let you know, it seems like nightdancer confused it with the old, ergot derived RLS meds. There's no reference to be found in reputable sources that benzatropine is ergot-derived anywhere. It doesn't seem to be too risky unless you are exposed to a lot of heat (it suppresses sweating} or urine retention which it makes worse.

[LisztLover in reply to Wonko_TheSane]

Just got home from work having taken over 6,700 steps and so far, so good. I’m ecstatic about being off Mirapex without any suffering...so far! I know how tricky and under-handed RLS truly can be!! I’m just so pleased! Thanks! 🙂🦚🙂

[kelirock]

I tried Cogentin a while ago, didn't do anything for me, it is actually meant to treat side effects from anti psychotic medications such as tardive dyskinesia. Please keep posting results as I would be interested to hear your progress

[LisztLover in reply to kelirock]

It’s also used for Bipolar Disorder. If it helps control EPS, which I believe is a neurological thing, why not the legs/arms in RLS? It’s all weird, neuro-type movements as is Parkinson’s. Just making an observation...thanks so much for responding! It just sounds a little too easy!!

[nightdancer in reply to LisztLover]

To try and explain and answer your question, bipolar is an imbalance of chemicals in your brain. With RLS we actually have enough dopamine, BUT, it gets blocked on it's way to the brain, especially the D1 and D3 receptors. In Parkinson's, it is actually a shortage of naturally produced dopamine. Cogentin is listed for treating tardive dyskinesia, which is a condition that happens from taking antipsychotics. I learned about that in depth, because my nephew is Schizophrenic, and when he had his initial horrible episodes with voices , etc we had to hospitalize him several times. he developed wicked dyskinesia while they were trying our different meds for him. he got to the point that he could take no psychotics except one. His dyskinesia was mainly in his neck, which caused him to be constantly banging his head on things, and he would bite his lips to the point we had to constantly watch him, even in the hospital because the nurses had such a hard time with him. So, when you say it does sound "too easy" it really DOES sound waaaaay too easy on your end. That is why I am so interested in your entire med list, if you don't mind, because something is missing from what you are describing to us. xx

[kelirock in reply to LisztLover]

I have never seen Cogentin used for RLS and I was a registered psychiatric nurse for 35 years (recently retired). It is used to treat side effects of the major tranquilizsers/antipsychotic medications. It is great you are experiencing some relief from RLS but please, research the drug as it has some nasty side effects of its own. Good luck with it and keep us all posted as anyone who is experiencing success is of great interest to the group.

[nightdancer]

In 29 years of managing RLS groups. and suffering myself, while I have heard of this drug, NEVER have I seen it used for RLS. And, how long were you on Mirapex, because I would not want anyone that it is a good idea EVER to stop Mirapex or any dopamine agonist COLD. The withdrawal 99% of the time is horrible. I have not read down thru the comments, so will do that before I ask more questions. I have several.

[LisztLover in reply to nightdancer]

Thanks so much for responding! The Benzatropine isn’t being prescribed for RLS, but to prevent any extrapyramidal effects of starting Vraylar for Bipolar, which is an antipsychotic. These 2 drugs are the only additions to my drugs. I have been on Lithium for 30 years and no one will go there when managing my meds. I also take Cymbalta, Carvedilol, Lisinopril, Levothyroxine, Nexium, Insulin (Humalog and Lantus) and the 2 new meds of Vraylar and Cogentin.

I took Mirapex for a few years with the last year being almost debilitating and so painful. Sleeping a couple hours/night and then working a 12 hour shift. The only 2 things to give me any relief at all was Kratom and Cannabis. My top dose was 2mg, 1mg in the am and 1mg in the pm! I was down to 0.5mg before this relief occurred and had better nights on that dose than any other dose. When I realized that I wasn’t having any symptoms, I stopped taking the Mirapex. So far, I’m not having any symptoms at all. Surely being off the Mirapex can only help me! I go back to work tomorrow and all that activity normally means pain and suffering, so we’ll see!!

[LisztLover in reply to LisztLover]

The reason for being on Vraylar is for having an episode with suicidal thoughts with a plan the week of Thanksgiving. Horrible...while in the hospital they gave me a 20mg injection of Geodon with made my legs crazy! I couldn’t stand or walk...horrible...but it made my harmful thoughts cease. It was worth it!

[nightdancer in reply to LisztLover]

ok, so that is the proper use then.

[nightdancer]

For how much of your life have you had RLS, don't think you mentioned that.

[LisztLover in reply to nightdancer]

Since my teens when antihistamines seemed to start things off. Then around age 30, started Lithium and Trazodone which really bothered me If I didn’t fall asleep during 15-20 minutes, they would start. I knew nothing of RLS at that time.

[nightdancer in reply to LisztLover]

antihistamines are a trigger for 99% of us. Things like Benedryl or anything with Diphenhydramine will set off RLS, I know it is on every "Drugs to Avoid" list for RLS. That I know for SURE. lol if you punch antihistamines into the search box you will see a ton of posts about it.

[Merster]

I sincerely hope your success isn't short lived. Not to be a buzz kill but I recently had 4 days in a row without Requip and felt fantastic. And then back with a vengence. Now I am afraid to take it and afraid not to. Do you ever have suicidal thoughts? I don't believe I could do that but at the same time I don't want to go through life with RLS being the main focus in my life. I have too much else to live for. I wish for you long term relief LisztLover

[LisztLover in reply to Merster]

Your kindness is very much appreciated! I wish the same for you...

[LisztLover]

Still hanging in there after around 10 days off Mirapex and on Cogentin (Benzatropine). If and when my symptoms return, I will remain grateful for this quiet period. I’ve been suffering for some time. My left arm jerked around for about 1/2 hour yesterday, but there was no pain associated with it and went away. My poor sleep habits remain despite the relief from RLS, but I’m not complaining! I hope all are well! Have a great day 🙂

[LisztLover]

Hello!

It’s been about 2 1/2 weeks that I’ve been off Mirapex! Now I view it as poison, out to ruin my quality of life!! Lol! If my legs begin to feel “funny” in the evening, I go ahead and take Benztropine and in 20 mins, those feelings are gone. They’re nothing compared to what they used to be. I’m just updating this thread as I said I would. I hope you all have a great day!

[LisztLover in reply to LisztLover]

Hello! Of course, the miracle faded and RLS came back like a demon. I jumped back on the Mirapex after a few consecutive nights of torture. I just couldn’t take it and had to work. Such a merry-go-round thing. I feel doomed to living life around the RLS. I guess it is what it is and I’ll be taking it hour by hour!

[involuntarydancer]

That's a shame, LisztLover. I would suggest you do your best to manage your drug regime actively - keep your mirapex dose as low as possible (I would not go higher than 0.088mg per day - I think that is 0.125mg in the US) and make sure your serum ferritin is high. If this dose is inadequate to cover symptoms consider trying another drug to boost effectiveness such as gabapentin (though proceed with caution due to your depression) or maybe tramadol, if you can get a prescription for it, rather than taking more mirapex. Maybe take a break from mirapex at the weekends (or when you are not working) or for 4 days each month or something like that to try to prolong its effectiveness at a low dose.