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hoffman
@hoffman

Posts: 4
Joined: Dec 07, 2017

Antipsychotics: I have been experiencing rapid cycling for months.

Posted by @hoffman, Dec 7, 2017

Over the past months my mood has been up and down. My psychiatrist replied that I go on Seroquel, which I was on years ago as well as Zyprexa. When he suggested this, I blurted out “Absolutely not!!!!” I have been on these horrible antipsychotics much of my life. He and I have had discussions about the long term use of these. Not only that but the side effects including weight gain. When I taught school when I was 28, my psychiatrist put me on Mellaril and I gained 40 lbs that year. Years later the newer antipsychotics I took increased my weight enormously to 238 lbs. But my issue is that I have been concerned about whether these drugs have long term effects. I have been looking for a study that covers the years 1940s to present. My psychiatrist says no, and is safe. But I have read books that say on the contrary. I’m on so many medications it’s ridiculous. I’m bipolar, and have stability problems . It’s created a lonely, ghastly spending and in debt, no sex drive, no husband or children, isolated life. Yeah, they really work. I would be most grateful if there is anybody who has any information on studies that have been published by reputable doctors or researchers. I’m turning 65 next month. It’s ugly.

REPLY

Hello, @hoffman. Welcome to Mayo Clinic Connect. Thanks for all this helpful background on your bipolar diagnosis and your journey with different medications. I am wondering if perhaps some of our other members who have talked about bipolar may have some information for you on long-term studies on antipsychotics like Seroquel, such as @coloradogirl, @amberpep, @peach414144, @lesbatts, @danybegood1 and @relay123.

You mentioned reading books that indicate there may be something unsafe about taking antipsychotics over the long term. Can you tell us more about what you read?

@lisalucier

Hello, @hoffman. Welcome to Mayo Clinic Connect. Thanks for all this helpful background on your bipolar diagnosis and your journey with different medications. I am wondering if perhaps some of our other members who have talked about bipolar may have some information for you on long-term studies on antipsychotics like Seroquel, such as @coloradogirl, @amberpep, @peach414144, @lesbatts, @danybegood1 and @relay123.

You mentioned reading books that indicate there may be something unsafe about taking antipsychotics over the long term. Can you tell us more about what you read?

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Hi @lisalucier and thanks for mentioning me. I don’t have direct experience with bipolar, only through my daughter who is an adult and manages her own meds. One thing I would mention for @hoffman, though, is the value of having a conversation with your pharmacist if you have questions about your meds and the long-term side effects. Most younger pharmacists now are PharmD’s (which is a doctorate in pharmacy) and therefore are very knowledgeable and even an RPh has 3 years or pharmacology whereas the typical doctor only has about 3 months. Plus, their services are typically free if you are using the pharmacy for your prescriptions. Also, you can request that your doctor refer you for a medication review with a PharmD. Although this does typically have a cost, it’s a valuable service. My husband had a meds review while going through treatment for Hepatitis C (it was a standard part of their process at University of Illinois) and the PharmD was able to recommend some changes that really improved his quality of life.

Also, @hoffman, have you considered a support group for people with bipolar? That might make you feel less alone in this. It’s a tough situation to live with and feeling lonely certain doesn’t help.

@hoffman

With the blessing of my doctors, I’ve at various times tried tapering off medicines, and have learned whether the med is or isn’t helping. I’ve stopped some, and went back on some. One time, I started a new med shortly after starting another one, so I didn’t feel it was possible to know if I needed both of them, and what effect each one was having on me, if any.

It can be very complicated when you take multiple medications. I’ve learned a lot from doctors in different fields, from pharmacists, and from reputable Google sites. Asking lots of questions may be hard, and might irritate the doctors, but I’ve learned the importance of educating myself and advocating for myself.

I believe that you’ll only be stronger and healthier the more you be an inquisitor. I pray that you find the answers you need, and stay safe with your medications.

Jim

i was taking lithium carbonate for 2 years when first diagnosed at age 47. (in 1977) it was fine for me. was warned to stop because my job took blood samples of their employees and if i were found out i would lose my job. so i stopped. in 2005 i tried using lithium again but because of my age of 68 i had to stop for shaking terribly. tried many others but the same shakes. do not remember the names of the other drugs. now i try to live without. difficult. as you age the body rejects. also perhaps because i am on eleven prescription medications for my many ailments. i find helping others reakky, really helps me especially when it is appreciated. love to all barbara

I urge people who have been on heavy doses of antipsychotics for years to ask your psychiatrists if long term use will create any medical or mental health repercussions in the future. Decades ago there was a tragic and cruel method to calm mentally ill using lobotomy. A procedure that early years a doctor (stumped right now of his name) performed this procedure first cutting into the head of a person who may have been out of control, removing tissue from the front lobe. As he got better at this, he figured a way to make the procedure more efficient and began using an ice pick in which he inserted under the eye lid in an effort to be able to perform even more labotomys on as many he could do. It was an effort to perhaps cure people by making them have loss of alertness or docile. I find this to be torturous and in humane. You are probably aware of two women who had this treatment….JFKs sister, and Tennessee Williams sister. Both were institutionalized. Both men regretted having this procedure performed as both women suffered incoherence and were not able to live normal lives. Then later came electrical convulsant therapy, ECT without any anesthesia. Often referred to as “shock treatments”, they still exist today but use light anesthesia. My point is, in later years they found these procedures to be brutal and destructive. Therefore, if the old and new antipsychotics I have taken over the last years , will they someday prove to be harmful.

@hoffman

I urge people who have been on heavy doses of antipsychotics for years to ask your psychiatrists if long term use will create any medical or mental health repercussions in the future. Decades ago there was a tragic and cruel method to calm mentally ill using lobotomy. A procedure that early years a doctor (stumped right now of his name) performed this procedure first cutting into the head of a person who may have been out of control, removing tissue from the front lobe. As he got better at this, he figured a way to make the procedure more efficient and began using an ice pick in which he inserted under the eye lid in an effort to be able to perform even more labotomys on as many he could do. It was an effort to perhaps cure people by making them have loss of alertness or docile. I find this to be torturous and in humane. You are probably aware of two women who had this treatment….JFKs sister, and Tennessee Williams sister. Both were institutionalized. Both men regretted having this procedure performed as both women suffered incoherence and were not able to live normal lives. Then later came electrical convulsant therapy, ECT without any anesthesia. Often referred to as “shock treatments”, they still exist today but use light anesthesia. My point is, in later years they found these procedures to be brutal and destructive. Therefore, if the old and new antipsychotics I have taken over the last years , will they someday prove to be harmful.

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@hoffman

I guess time will tell. What anti-psychotics are you referring to?

Jim

Hi there ….. I’ve got Bipolar 2 and also take a fist full of meds. A few years ago my doc. tried me on Seroquel…..I thought my head would explode! I never felt so totally out of control and yet every time I sat down I fell asleep. I was really way out there …. it was as if I were smoking a halucinogenic. Well, I got off that pronto. Now I’m taking Lamictal, which seems to be working, but what about the long term affects? It also makes my mouth so dry that my tongue sticks to the roof of my mouth no matter how much water I drink. I also take Wellbutrin and Klonopin. Well, for the passed 6 months or so I have been having balance problems, unsteady on my feet, and falling frequently. I looked up the Klonopin and every side effect listed, I have …… the most dangerous of which is falling. It seems that you can’t win with these things. I’ve reduced 1/2 tablet of the Klonopin so now I only take 1 in the morning and 1/2 at night.
I’m probably playing with fire, doing this on my own, but if I called my doctor with every weird side effect …. I’d be on the phone with him every day. It seems to me it’s a catch 22. I was so hopeful when I was finally diagnosed ….. now? not so much.
abby.

@hoffman

I urge people who have been on heavy doses of antipsychotics for years to ask your psychiatrists if long term use will create any medical or mental health repercussions in the future. Decades ago there was a tragic and cruel method to calm mentally ill using lobotomy. A procedure that early years a doctor (stumped right now of his name) performed this procedure first cutting into the head of a person who may have been out of control, removing tissue from the front lobe. As he got better at this, he figured a way to make the procedure more efficient and began using an ice pick in which he inserted under the eye lid in an effort to be able to perform even more labotomys on as many he could do. It was an effort to perhaps cure people by making them have loss of alertness or docile. I find this to be torturous and in humane. You are probably aware of two women who had this treatment….JFKs sister, and Tennessee Williams sister. Both were institutionalized. Both men regretted having this procedure performed as both women suffered incoherence and were not able to live normal lives. Then later came electrical convulsant therapy, ECT without any anesthesia. Often referred to as “shock treatments”, they still exist today but use light anesthesia. My point is, in later years they found these procedures to be brutal and destructive. Therefore, if the old and new antipsychotics I have taken over the last years , will they someday prove to be harmful.

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I wonder exactly the same thing. abby

@peach414144

i was taking lithium carbonate for 2 years when first diagnosed at age 47. (in 1977) it was fine for me. was warned to stop because my job took blood samples of their employees and if i were found out i would lose my job. so i stopped. in 2005 i tried using lithium again but because of my age of 68 i had to stop for shaking terribly. tried many others but the same shakes. do not remember the names of the other drugs. now i try to live without. difficult. as you age the body rejects. also perhaps because i am on eleven prescription medications for my many ailments. i find helping others reakky, really helps me especially when it is appreciated. love to all barbara

Jump to this post

Hi peach ….. when I started taking Lamictal, I also began having what they call “essential tremors” ….. my writing looked like I was 100, and I could not do anything that required careful and fine work. So, to counteract that, my doctor put me on propanalol which is working, but …… what else is it doing long term? It feels like a game of russian roulette.
abby

@amberpep

Hi there ….. I’ve got Bipolar 2 and also take a fist full of meds. A few years ago my doc. tried me on Seroquel…..I thought my head would explode! I never felt so totally out of control and yet every time I sat down I fell asleep. I was really way out there …. it was as if I were smoking a halucinogenic. Well, I got off that pronto. Now I’m taking Lamictal, which seems to be working, but what about the long term affects? It also makes my mouth so dry that my tongue sticks to the roof of my mouth no matter how much water I drink. I also take Wellbutrin and Klonopin. Well, for the passed 6 months or so I have been having balance problems, unsteady on my feet, and falling frequently. I looked up the Klonopin and every side effect listed, I have …… the most dangerous of which is falling. It seems that you can’t win with these things. I’ve reduced 1/2 tablet of the Klonopin so now I only take 1 in the morning and 1/2 at night.
I’m probably playing with fire, doing this on my own, but if I called my doctor with every weird side effect …. I’d be on the phone with him every day. It seems to me it’s a catch 22. I was so hopeful when I was finally diagnosed ….. now? not so much.
abby.

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I’m not sure that Lamectal is that dangerous as it is used for those people who have seizures and also used for stability for bipolar. It has been around for many years. I don’t believe I’ve seen any articles or papers that have said there is a danger to take this medication. Also I am on Klonopin and Wellbutrin. My doctor just said to drop the Wellbrutrin because he thinks it’s making me cycle. Have been on benzodiazepines most my life to treat anxiety. So far ok. They’ve been around years. Thank you for your post. I hope things go well your meds. Take care

Hi hoff …. your Rx’s sound like mind. I do think Lamictal is good for now – my only problem with it is that dryness of my mouth …. I guess all things considered, that’s not a big deal. I’m also on Wellbutrin and Klonopin – Wellbutrin seems to have no adverse side effects, but as I said in a previous note, the Klonopin side effects – specifically – poor balance, falling, unsteadiness – is worrisome to me. They’re all listed on the papers I get from my Pharmacist. I’m not young (73) and I sure don’t want to break a bone. My Rx is for 1-1/2 AM and 1/2 PM (don’t remember the mg.). I’ve eliminated the 1/2 in the morning and I’m moving around as I do my work, much more slowly. I’ve written to him to tell him what I’ve done so I’ll have to see what he says.
abby

Hi dear!! Yes, I agree with the unsteadiness and fear of falling. It is scary. I take the Klonopin pretty much when I feel I need it. Because it makes me tired in the morning and work part time, I dont take it in the morning. But sometimes I take it after I get home and I’m stressed out. I’m pretty certain that your doctor would approve the change you want to make. However it’s always prudent to talk him. Please be careful walking. I’m going to have a hip replacement sometime when I can’t bear walking anymore. So I know I try to be careful indoors and out. It was very kind of you to send me your email. I hope everything goes well for you and have a very Happy holiday! Blessings

@amberpep

Hi hoff …. your Rx’s sound like mind. I do think Lamictal is good for now – my only problem with it is that dryness of my mouth …. I guess all things considered, that’s not a big deal. I’m also on Wellbutrin and Klonopin – Wellbutrin seems to have no adverse side effects, but as I said in a previous note, the Klonopin side effects – specifically – poor balance, falling, unsteadiness – is worrisome to me. They’re all listed on the papers I get from my Pharmacist. I’m not young (73) and I sure don’t want to break a bone. My Rx is for 1-1/2 AM and 1/2 PM (don’t remember the mg.). I’ve eliminated the 1/2 in the morning and I’m moving around as I do my work, much more slowly. I’ve written to him to tell him what I’ve done so I’ll have to see what he says.
abby

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@amberpep

Hi, Abby. I’ve been taking Wellbutrin and Klonopen for 12 years now, 450mg of Wellbutrin and 1 Klonopen at bedtime and a second if I need it. I tried cutting back on the Klonopen once, but it really messed with my sleep.

If I have balance problems, it would be because of peripheral neuropathy. I wouldn’t necessarily blame the Klonopen, as lots of things can affect our balance. Until you figure out the cause, you might consider using a cane or walker. I know. We don’t want to go there, but it could be a temporary solution to keep you safe.

Cutting back on the Klonopen can be a real challenge, and would have to be done in very small increments and over an extended period of time. Keep us posted how it goes.

Jim

As to the harmfulness of anti psychotics-I was put on an array of them for 8 years and was told I had no choice. Was kept in the metal health system for 8 years with threats/guilt trips/manipulation/lies. I was on such a cocktail I am amazed I was even able to function. Even was guilt tripped into having a Vegas Nerve Stimulator which was one of my worst nightmares. I told the doctor I did not think it was a good idea as I could not wear a battery operated watch. I was accused of not wanting to get better!!! It continually reset and a maintenance check was done and there was nothing wrong with the device.
Will not go into all of that as it is behind me now. I had it removed in 2010. I will no longer be a guinea pig!!!
I am now seeing a qualified therapist with good boundaries and has some experience working with PTSD. Validation I am not Schizophrenic just in case another MD wants to put me on an anti psychotic as I do not need them. Good chance that those nasty drugs did damage as the neuropathy started with the introduction of these and the VNS. Side effects I was told. Have been off of all of these for over 4 years. Am I still having side effects????
Dismounting soap box once again.

@amberpep

Hi there ….. I’ve got Bipolar 2 and also take a fist full of meds. A few years ago my doc. tried me on Seroquel…..I thought my head would explode! I never felt so totally out of control and yet every time I sat down I fell asleep. I was really way out there …. it was as if I were smoking a halucinogenic. Well, I got off that pronto. Now I’m taking Lamictal, which seems to be working, but what about the long term affects? It also makes my mouth so dry that my tongue sticks to the roof of my mouth no matter how much water I drink. I also take Wellbutrin and Klonopin. Well, for the passed 6 months or so I have been having balance problems, unsteady on my feet, and falling frequently. I looked up the Klonopin and every side effect listed, I have …… the most dangerous of which is falling. It seems that you can’t win with these things. I’ve reduced 1/2 tablet of the Klonopin so now I only take 1 in the morning and 1/2 at night.
I’m probably playing with fire, doing this on my own, but if I called my doctor with every weird side effect …. I’d be on the phone with him every day. It seems to me it’s a catch 22. I was so hopeful when I was finally diagnosed ….. now? not so much.
abby.

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I'm bipolar 2 – got off Saroquel, changed to Lamictal and much better. Still take Welbutrin every AM as I did with the Saroquel but no more am brain fog and stupor. It takes a long time to get your dose of Lamictal to the effective amount and the same amount of time to wean off Saroquel but it's worth it. Prob 90-120 days of slowly shifting. I'm happy I'm off the Saroquel. I had been on it for 4 straight years and it was starting to affect my short-term memory big time and i was like a zombie til noon every day. I still take a very small dose of kratom powder each am rather than coffee because it focuses my mind without giving me anxiety or jitters like coffee.

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