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RachD87

RachD87: Been on meds since 2007. Have had DP/ DR for 3 years straight

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RachD87

In 2007 I was put on meds at 19 for depression. Then they decided I was bi-polar, the bi-polar where you are just really depressed. So from 2007 until November 2012 I was on a cocktail of meds. Three meds at a time. I was on abilify, wellbutrin, sequel ( only for two weeks because it made me extremely tired) Lamictal, Depakote, Effexor and so on. So what would happen is my psychiatrist would prescibe meds and I would feel better and didn't want to take them so I would stop or miss a lot of days.

 

When I would go to see him I lied and said I was taking them and they didn't do anything so he would prescribe a different medication. It was always three at a time and I would stop or skip days of taking the medications. So this went on for 5 years. So in I believe July 2012 I was prescribed Effexor and was also on Lamictal and something else.

 

So I was missing days as usual for months and in mid November 2012 I woke up and had this really weird detached feeling like I was in a dream, things weren't real. So I freaked out. I had been trying to get a hold of my psychiatrist and had learned within two weeks he unexpectedly retired and fled the country and no one could communicate with him. A few days later I stop the Effexor, Lamictal and whatever that drug was cold turkey. I didn't know what to do.

 

Oh I forgot to mention, my leg went totally numb in August 2012. In early December 2012 I got double vision. So my family doctor sent me in for a MRI. I had an appointment in Cleveland on December 23rd 2012 and they diagnosed me with multiple sclerosis. So I thought "this feeling" I had was caused by my ms. So in January 2013 I was put on zoloft, Lamictal and abilify. Later that summer 2013, I had a breakdown bc of being diagnosed with ms and was hospitalized.

 

They changed my meds to abilify, zoloft and depokote, because I had been on them before. Then from that time to now I have switched meds. Zoloft was a constant and I tried, Topamax, and the invega and abilify shot. So for the past year, I have been on latuda 40mg and zoloft 200mg. I have started weening off. My doctor just started me on 20mg of Latuda to ween off. I am starting with Latuda and then zoloft.

 

So I thought for years this feeling was due to my ms, but I am learning more and more it's most likely due to the on going meds I have been on. Hence why I am finally weening off and stopping! Can someone please give me any advice or info, thank you for any help. I was wondering if you think my derealization/ depersonalization is from the meds?? Will it go away after weening off these meds for good?

 

Do you think it will take years to heal and get rid of this horrible dr/ dp? Is there anything else I can do to help myself go back to normal and get rid of this feeling for good? I will still be taking my ms medication which is Tecfidera. Please and input would be much appreciated, Thank You

Edited by KarenB
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SquirrellyGirl

Hi RachD87, 

 

Welcome to SA - you have come to the right place for support to come off your meds.

 

You have a very complicated history with meds so it will take some looking over from the more experienced moderators here at SA to make suggestions on a possible path off.  It is very common to have side effects from these meds that includes depersonalization and derealization since they seriously affect neurochemistry.

 

Aside from the DP/DR what is your current symptom profile?  How is your sleep and energy?  Since you have already begun to taper, please include the dosages that you cut by, the interval between drops, and your symptoms in response to those cuts.

 

What would be really helpful is if you could take a crack at filling out your signature block with your drug history from when you were put on this latest cocktail in 2013, including any dosage changes between then and now, up or down.  Include dates to the best of your ability.  This will allow anyone who drops in to your thread to see your history at a glance.  Instructions are here:

 

Please put your Withdrawal History in Signature

 

Please enter all meds you take in the drug interaction checker (Drug Interactions Checker).  Copy and paste the results here.  Include your MS drug and any others you are taking.  This will allow us to see which drug might be the first one to work on.  It sounds like you have already begun to taper.

 

We recommend a 10% taper, calculated from the previous dose, every 4 weeks.  

 

Why taper by 10% of my dosage?

 

We also suggests only tapering one drug at a time to prevent additional destabilization of the nervous system.  The goal is to prevent extreme withdrawal from occurring; the idea is to keep you comfortable and functional through the tapering process.

 

Taper more than one drug at a time?

 

To understand more why we recommend a slow taper, it helps to understand withdrawal syndrome:

 

Introduction to AD Withdrawal Syndrome

 

This is your intro thread where you can document your experience, ask questions about your situation, give updates, etc.  You can click "Follow" above and be notified of any responses to your thread.  You may also wish to bookmark your thread so it is more easily found.

 

We look forward to additional information.

 

SG

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degen12

Looks like this is your official thread so I'll repost here:


 


It's incredibly common, both on psych drugs and while in withdrawal. I don't have any authoritative source for that but MANY people here describe having DP/DR. You might not see it called that as often because many don't know that it's called DP/DR and just describe the detached feeling.


 


As an aside, Latuda is the akathisia king. Zoloft is almost as bad. The combination.. yikes.


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Shep

Hi, Rach. Welcome to the forum from me, too. I also have dp/dr as my main symptom. 

 

Here's a thread you may find useful:

 

Derealization or Depersonalization

 

If you didn't have this before you started the meds, it's likely coming from your complicated medication history and will resolve in time. I also have been off and on many combinations of drugs for supposed bipolar, and it can take awhile for your mind / body to regain balance. 

 

I've been off all my meds for about 11 months after 30 years use and am slowly getting better. But dp/dr seems to be the last thing to go. So I'm managing it using mindfulness techniques and various forms of distraction to pass the time. It's one of those symptoms that is easy to start fixating on things and getting trapped inside your own head. So please reach out for support any time you need some reassurance. Many of us know exactly how you feel. 

 

Good luck on your taper. You've come to a great place for information and support. 

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RachD87

I really appreciate the support from you guys. I am so relieved and thankful that there are others who have gone through and are going through this too. I am also so happy you all are knowledgeable and have reliable information on this matter. I hope I am appropriately tapering from my first med, Latuda. My psychiatrist had me on 40mg now tapering to 20mg. He says to take the 20mg for a month and then stop, then I will be completely weened off Latuda. Then he said I will start to ween off the 200mg of zoloft.

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SquirrellyGirl

Hi Rach, 

 

It doesn't matter which drug - they all have the same kind of effect on neurons and so coming off of them runs the risk of withdrawal, especially when following such a fast taper plan as your doctor has lined out for you.  Surf around this forum and you will encounter intro after intro where the patient followed the doctor's taper and got into deep water.  The docs know how to get people on the drugs but don't know how to get them off!

 

Here are some links about talking to your doctor:

 

What should I expect from my doctor about withdrawal symptoms?

How do you talk to a doctor about tapering and withdrawal?

 

How was the taper from 40 to 20 mg of Latuda conducted, dosage drops and frequency?  How did you feel while doing this taper?

 

You may want to read this thread about which drug to taper first.  It may be prudent to stay at 20 mg Latuda and work on the Zoloft.

 

Taking multiple psych drugs? Which drug to taper first?

 

From Rxlist.com, Common side effects of Latuda include drowsiness, dizziness, nausea, diarrhea, stomach pain, loss of appetite, shaking, muscle stiffness, weight gain, mask-like facial expression, inability to keep still, restlessness, agitation, blurred vision, breast swelling or discharge, missed menstrual periods, decreased sex drive, impotence, or difficulty having an orgasm.

 

 

What are the possible side effects of sertraline (Zoloft)?

Get emergency medical help if you have any of these signs of an allergic reaction: skin rash or hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself.

When you look at how you are feeling, which would you say is more strongly influencing your over-all way of going?

Though DP/DR is very common in withdrawal and also from taking these types of meds in general, we have no way of knowing what the course of your recovery will be like.  I wish I could look in the crystal ball....Hopefully, the link Shep gave you opened some avenues of exploration.  You can also contact members privately to see how they are doing currently with their DP/DR.  I have experienced it for brief periods (hours to a day or two) but recovered.

You have had a rocky ride with these meds so it is crucial that you think in terms of "slow and steady wins the race."

SG

 

 

 

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RachD87

My doctor has me tapering for only one month by 20mg. I was on 40mg of Latuda and I am now on 20mg. He gave me a one month supply of 20mg and said after the month is up I will be weaned off Latuda completely. I have 2 more weeks left of the 20mg of Latuda. I asked him if it was too fast and he said no.

 

Honestly, I feel fine. I feel like I am in a better mood. I real don't have anything bad going on except for the depersonalization/derealization which I have had for 3 years.

 

I am hoping that I will be fine the way he has me tapering off. I don't know if I need to go in and tell him I need to ween off slower or not. I am not sure he knows what he's doing.

 

I just want the most effective way too ween off the 40mg of Latuda that I was on, now 20mg of Latuda, and the 200mg of Zoloft. I want to ween off the best way to heal my brain of the dp/dr effectively and the shortest amount of time. Thanks for your support you guys. I really hope healing my brain and being back to reality will be happening soon!

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nz11

I just did a google to find out the symptoms of ms

and this is what i found....i cant believe what i am reading, this is basically everything someone has in withdrawal from these ssri drugs!

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

 

I'm so sorry the medical profession have let you down like this.

Im trying to figure out how long you have been taking 200 mg zoloft and 40 latuda ...you say "for the past year" ; i assume thats 12 months with the zoloft being updosed from 100 to 200 (this is the equiv of 69 mg of paxil) no doubt to smother the symptoms of the withdrawal from the previous drug smorgasboard.

 

So you have been taking 40 mg of latuda for a year then dropped it to 20 mg for one month then off.

I've got a bad feeling about this. Did the doctor advise how he will relieve the wdl symptoms from the latuda if they should visit?

 

Do you know the specifics of the plan for the zoloft taper?

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Shep

My doctor has me tapering for only one month by 20mg. I was on 40mg of Latuda and I am now on 20mg. He gave me a one month supply of 20mg and said after the month is up I will be weaned off Latuda completely. I have 2 more weeks left of the 20mg of Latuda. I asked him if it was too fast and he said no.

 

Honestly, I feel fine. I feel like I am in a better mood. I real don't have anything bad going on except for the depersonalization/derealization which I have had for 3 years.

 

I am hoping that I will be fine the way he has me tapering off. I don't know if I need to go in and tell him I need to ween off slower or not. I am not sure he knows what he's doing. 

 

I just want the most effective way too ween off the 40mg of Latuda that I was on, now 20mg of Latuda, and the 200mg of Zoloft. I want to ween off the best way to heal my brain of the dp/dr effectively and the shortest amount of time. Thanks for your support you guys. I really hope healing my brain and being back to reality will be happening soon! 

 

 

 

Rach, please re-read this thread and the links provided. I'm glad you're feeling fine now (except the dp/dr that you mention), but there's a high likelihood you will crash. Like NZ, I also have a bad feeling about this.

 

From my own personal history with antipsychotics and from what I've found from others on web forums, you may not get hit with symptoms for awhile, but when they happen, they may be rather severe. I've had rebound psychosis from coming off antipsychotics too quickly and all it got me was re-hospitalized and re-medicated. In the long run, it's better to go much slower and continue to have a higher quality of life. 

 

SquirrellyGirl mentioned reading this link and thinking about coming off the Zoloft first:

 

Taking multiple psych drugs? Which drug to taper first?

 

After you have a read, let us know what you think. You have a long history of coming off and on psych drugs, and the best way to get off of the psychiatric drug merry-go-round is to do a slow taper off the most stimulating drugs first and then the most sedating. This will allow you to be able to manage symptoms like akathisia, anxiety, and insomnia better and give you the best shot at finally being medication free. 

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Shep

I just did a google to find out the symptoms of ms

and this is what i found....i cant believe what i am reading, this is basically everything someone has in withdrawal from these ssri drugs!

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

 

 

 

 

NZ, Thank you for bringing this up because the MS connection to medication was written about by Dr. Ashton in the Aston Manual regarding benzodiazepines:

 

In my clinic, nerve conduction studies in patients with such symptoms revealed nothing abnormal - for example, there was no evidence of peripheral neuritis. However, the symptoms were sometimes enough to puzzle neurologists. Three patients with a combination of numbness, muscle spasms and double vision were diagnosed as having multiple sclerosis. This diagnosis, and all the symptoms, disappeared soon after the patients stopped their benzodiazepines. - http://www.benzo.org.uk/manual/bzcha03.htm

 

 

Rach, your double-vision and numbness may very well be a result of your meds. Antipsychotics and antidepressants can also cause this. In fact, benzo, antipsychotic and SSRI discontinuation are very, very similar. Once you get off all of these drugs, your overall health is likely to improve tremendously. 

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RachD87

You all are so helpful, I thank you. So, I believe I was on 40mg of Latuda and the 200mg of zoloft for about a year and maybe 3 months. I was put on 100mg of zoloft in January 2013. Then, about 10 months later I was put on 150mg of zoloft, then it increased to 200mg about a year and 3 months ago.

 

My ms symptoms are balance problems, fatigue, sometimes nerve pain and when I get over heated I get double vision. This just makes me so angry that this could be due to all these meds I have been on! I just feel so lost. In the part of Ohio I live in, mental health care is horrible and I don't know what to do. I was going to Cleveland Clinic, where my neurologist is, for my mental health treatment but it's almost 2 hours there one way.

 

So I am already on 20mg of latuda from 40mg, I think I should tell the psychiatrist to prescribe more latuda at 20mg and I will cut them so I can just taper myself. I will reduce by 10% every month. He has no plan for me to taper off. I had asked him if I was weening off too fast and he said "you should be fine" he also said I am like the bubble girl because I had described the dp/dr as if I was in a bubble or a dream. I mean this is just unbelievable that this is a professional psychiatrist. I have been to 3 other mental health places before and they are all pretty bad. The only reason I am going is to be able to be prescribed these meds to ween off. I will have to taper this the correct way myself since he has me tapering off too fast.

 

Then when I am off the Latuda for about a month, I will start the to taper off of the 200mg of zoloft. I will do it the same way reducing by 10% of the last dosage each month.

 

I am just really upset that all these problems that have caused me so much pain. The biggest obstacle is having the dp/dr since November 2012, non stop. Not long ago I would wish I wouldn't wake up in the morning. I pushed away all of my friends and have no social life anymore. I don't like being around people having this feeling. Basically, I see my family and work.

 

I do feel much better knowing that the dp/dr will go most likely go away. I feel like I am putting my life on hold until that happens. I had always thought the dp/dr was from me having ms and it was caused by one of the lesions I have on my brain. When I looked up dp and ms it would say dp could be a symptom of ms. Then my neurologist said he hasn't heard of any of his patients having a "dream like" feeling. So I started asking questions on health websites and people were telling me it's the meds that cause this feeling. I just thought the ms caused the feeling because abut a month ans a week after the dp/dr started I was diagnosed with ms.

 

So I was on lamictal,effexor xr and abilify when this feeling had started back in November 2012. I wasn't taking the medicine as prescribed. I didn't want to be on it so I was taking it for a few months, then like every other day, then I would miss 4 or 5 days at a time. Then this feeling (dp/dr) started and I stopped everthing cold turkey. I am just really afraid that the dp/ dr will never go away or take years to go away. I mean I am trying to do what I know, like weaning off these meds properly, eating right, sleeping enough and excerise. I am just really upset that I might have another 3 to 3 and a half years of this feeling or it just never goes away.

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AliG

Rach . If you take the advice given here, you should be fine. In reading your thread , I get the impression that you think your doctor actually knows what he is doing . Most doctors don't understand withdrawal, and will most likely have you tapering off too fast . If you stick to the schedule outlined here, you will do a lot better. It's not always a matter of every month. Sometimes , you will need to hold for a lot longer. If you can learn to listen to your body , and then hold until symptoms start to recede , it will serve you well , in the long run.

 

The slowness of slow tapers

 

How do you talk to a doctor about tapering and withdrawal?

 

http://survivingantidepressants.org/index.php?/topic/4954-rhis-start-small-listen-to-your-body-taper-plan/

 

Ali

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RachD87

Ali, thank you for the positive advice. I think I will be fine too and will make it out of this. Honestly, when I first was put on meds I thought my psychiatrist knew what he was doing. Now, I know most or all don't know what they are doing. I definitely don't think my psychiatrist now knows what he's doing. I find him very unprofessional. I really don't have any other options of places to go because this is about the best I can get in this area. I will just be asking him for more pills so I can do a very slow taper myself. I will just cut the pills. I think this is probably my best option to get rid of the dp/dr as quickly as I can.

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RachD87

So I have been feeling pretty upset lately.. I have been really sad and lost. I keep thinking that this dp/dr will never go away. I keep thinking if it doesn't go away within a year or so, what's the point of living. I am not in reality or the present moment. I keep thinking in my head while I am with my family or in public, what would I perceive or feel without having this dp/ dr. I miss that sooo much, just being alive! I know I would never be depressed or take being in the present moment for granted ever again if this went away.

 

I am sorry to be a downer but I just don't know what else I can do to get rid of the dp/dr. Do you guys have any suggestions?

 

So I was able to have a nurse from the facility I go to give me a 30 day supply of 40mg pills of Latuda. I am going to say at 20mg a little longer than slowly taper from there with the pills I have. I have a pill cutter. My psychiatrist can't see me for another month. So all the support I got was to have a nurse give me the 30 day supply of 40mg of Latuda. I am absolutely going to report this place I go to. I have called and left messages for the director all last week and no one will call me back. This is unbelievable! Does anyone know what I can do to report this?

 

I would really appreciate any comments. Thank you sooo much

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SquirrellyGirl

Hello Rach, 

 

When I read your post, I decided to do some research on DPDR, on living with it.  I came across a blogger, lblimboland.wordpress.com, who had written about her life with DPDR extensively.  She is taking a break from her blog, after a disaster befell her boyfriend.  She writes in her last blog entry:

 

"Prior to all this happening, I received a really interesting email from a previous DPDR sufferer who had now fully recovered. It really struck a chord. He gave some fantastic advice but the crux of it was – IGNORE YOUR DPDR. AS DIFFICULT AS IT IS. Don’t write about it, don’t read about it, live your life as comfortably as possible. Don’t let it dictate what you do and who you are. I was starting to follow his advice to the letter before Liam’s accident and felt as though I was making steps – even though they were somewhat small – in the right direction.

 

Now Liam is home and I have this week off work to truly rest without daily hospital visits, it is my aim to start putting the advice back into practice. Therefore, I’m going to come off twitter, unsubscribe from /r/dpdr on reddit and stop writing on here for a while. I totally get what the dpdr recoveree was saying. The more i think, write or talk about DPDR, the more i am fanning the flames and magnifying the whole thing. There have been numerous times where I have felt weak and beaten, ready to give up. The thoughts have been so very dark and bleak at times but I must drag myself back out of the rabbit hole to a point where I can cope again."

 

There are no magic bullets. She was put on antidepressants, out of desperation, and if anything they made her worse.  I think what she wrote above is key.

 

It's not an easy message.  I enjoyed reading her entire last blog entry leading up to her boyfriend's accident, because she wrote of feeling so in love, getting really excited about going to a music festival, on and on - she was living her life and experiencing enjoyment, despite the DPDR!  I think that is what all of us have to do, whether or not we have DPDR - we need to get on with living, allow ourselves, and seek out joy.

 

I hope this gives you some comfort.  Maybe its the joy circuitry that allows one to find their way out of it.  Rather than be a victim of it, take control and demand your life back, that you aren't going to quit living because of it.  You will continue DESPITE it.

 

SG

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RachD87

Hello SG,

 

I want to say thank you for finding that. I agree 100% with that. I think going on with my life is the best thing I can do. I have wasted enough time waiting and hoping for this to go away. I think I will write that out and put to somewhere in my house. I think when I start thinking about when will it go away, reading that will remind me to ignore it. Thank you again

Rach

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Shep

That's a great article, SG.

 

Your last post sounds very positive, Rach. So far I haven't found anything that really helps with this symptom, and I've also had it since I started coming off these drugs in 2013. 

 

I find that if it gets overwhelming, I ask myself "what do I see, hear, feel, taste, smell, touch?" And that "grounds" me enough to bring me toward the surface of dp/dr so I don't feel like I'm literally drowning in it. 

 

I also find that periodically having a conversation with a friend helps bring me out of my head. I can't spend a lot of time talking to people because I get very, very tired. But being too isolated seems to make dp/dr a lot worse. So it's a matter of finding a balance. 

 

But like you so wisely wrote, ignoring it and getting on with life sounds like the best plan of all. :)  

 

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RachD87

Shep, thank you your comment. I think being too isolated makes dp/dr also. I am in the process of reconnecting with my friends. I had quit talking with my friends since I have had this dp/dr. I just had a lot happen from 2012 until now. In February of 2012 my boyfriend of almost 5 years broke up with me. Then I got dp/dr in November 2012. In December 2012 I got double vision then I was diagnosed with ms December 23rd 2012. I quit my job in early December 2012 because I couldn't see because of having double vision. I stayed in my home for 6 months straight and would always be crying. Then later that year my grandpa had died then two days later my house was broken into and all my electronics were stolen.

 

So in March of this year, I got my first job since 2012. I enjoy being social at work. I recently reconnected with my best friend since sixth grade. We have been texting. We are trying to plan a day we are both off of work to see eachother. I just pushed all my friends away because I felt weird around them having this feeling. I felt like an outsider and I would get really sad when I was talking with and I would think "my perspection on things is like I am in a dream" I hate it and didn't want to be around them until it was gone.

 

I am not waiting anymore! I miss my friends and having a life. I need to try to ignore this the best I can and keep thinking in my head this will eventually go away. Also I recently have joined weight watchers to get my weight under control and also be more social. I am trying to do things to get excited about life again. I think it's time for a positive string of things to happen ????

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Shep

Congratulations on your new job, Rach! And reaching out to your friends is also a good thing. I went out for lunch with friends yesterday. That was the first time in over two months, and it was hard and caused a lot of fatigue, but I'm glad I did it.

 

Yes, it's definitely time for a positive string of things to happen. Thanks for your very uplifting post. :)

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RachD87

Thank you Shep ???? I really appreciate your kind words. I am glad you pushed yourself to go out with friends. I agree that it can be difficult and cause fatigue, but you did it and should be proud of yourself.

 

Focusing on something else in social situations is key for me when I am working, I try my best not focus on how weird I feel. I try to be in the present moment as best I can when talking with someone. I think socialization helps a lot, especially with friends. For me, just not doing all the time because I would feel exhausted.

 

I think our brains just need to heal themselves and they will. I think with being off the anti-depressants, eating healthy, getting enough sleep and excerise will get rid of the dp/dr. Also trying to be as positive as we can and not let bad days get the best of us. We just need to give ourselves time to heal.

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