Melody21: tapering off 0.5mg Risperdal after 12 years

[Melody21]

Hello community!

 

TL;DR I'm tapering off Risperdal, experienced improvements while tapering off, improvements faded away after a few weeks again, worried about permanent brain damage, wondering if I can ever recover from it.

 

(Warning: This is quite a wall of text)

After searching for information on Google a lot, I decided to create an account here. I had trouble finding an answer to my specific problem.

The whole point of this post is to ask about permanent brain damage and if there is any hope of restoring from it, but I will explain everything I think it has ruined before asking, just so you can get a clear picture of what is going on.

A doctor of whom I - and others - don't remember who he/she was, has put me on Risperdal in my childhood. If I am to believe my mother, it is 0.5mg since the day I was put on it. I think I'm lucky I've always been on a very low dose.

The reason was PDD-NOS. Well, that's the diagnosis that they used to justify it. The real problem was aggression - I was having trouble controlling it. However, that's no longer a problem. Someone taught me techniques to control it that actually worked for me - while on the Risperdal. That happened around the age of 13 - I should've been taken off Risperdal right then, in my opinion.

Fast forward about 12 years, and here I am, a 23-year-old girl. I wasn't aware of how heavy the effects of Risperdal were, until some people on the internet began waking me up to what Risperdal was, when I mentioned to them that I took it. I used to believe it was required to manage my PDD-NOS. However, based on information I've found on PDD-NOS, and information I've found on the effects of Risperdal, I have been able to conclude that that train of thought was very much false... Risperdal is WAAAAYYY too strong for what I _had_.

What I should also add to this, is that I am a transgender girl. Meaning I started out born as the opposite gender, but used medical treatment to become a girl. (Don't worry, I have been very carefully psychologically analyzed by a hospital for about 2 years - even they were sure that I am truly transgender). This is relevant because that adds two more meds (hormones) to the mix: Estradiol, and Cyproterone Acetate. Those are Estrogen and Testosterone Blockers, respectively. These medications started about a year ago. I have noticed that the debilitating, lethargic effects have gotten worse ever since getting on those, but I refuse to get off those meds because I very much need them to have the body I desire.

 

Also, before I got on the hormones, I was on Lexapro (Escilatopram), an anti-depressant, in addition to Risperdal. It was supposed to protect me from stress caused by the gender clinic - it was not at all depression. But what it actually did, was make the effects I am experiencing from Risperdal now, 10 times worse. Meaning, I was basically just in my bed the entire time, and everything around me hurted. Even the TV. Fortunately I am off that stuff now, after 6 months of being kept on it, unaware that it was making me sick. Also, I lost my job during the time I was on that stuff...

 

I have also been on Melatolin for a very long time, 0.2mg of it. When I needed to knock myself out into sleep, I usually took 2 or 3mg. I recently heard Melatolin can cause side effects too, including some of the things I've been experiencing in the morning, so I decided to stop that one cold turkey. Melatolin can generally be stopped cold turkey according to many sources of information, so that's what I did. I had trouble going to bed on time at first without the help of melatolin, but at the time of writing this, I can go to bed about as easily as when I was on melatolin.

 

So... The problems I've been experiencing...

Around the age of 16 or 17, my memory suddenly experienced a sudden drop in effectiveness. Where I would be able to remember weeks at a time before, and clearly at that, I suddenly had trouble remembering past three days in the past. I don't think I've ever recovered from that.

In addition, in the last few years, meaning, 20 to 23 years of age, I've experienced tiredness, lethargy, laziness, and morning grogginess (headache, dizziness) - that are so bad that I have trouble integrating into society. They are preventing me from getting a job or going to a school - and that is the point where I decided to try to taper off the medication - with the help of my GP.

Specifically, the morning headaches, diziness, and slight nausea, are so debilitating that I can basically forget about doing anything in the morning. I end up sitting behind my laptop or computer and waiting for it to pass. Naturally, that prevents me from starting anything (a job, or school) that requires me to be available in the morning.

Also, if I would do _anything_ in the outside world that required a, well, decently normal amount of energy (such as travelling through the country using public transit).. The next day, I would be unavailable for the entire day. I would be unable to do much of anything. It would all hurt too much.

Of course, there's also the general daily tiredness/lethargy that never fully goes away.

Of course, these are not acceptable effects, and I want to get rid of them so I can get on with my life!

---

Now, a few weeks ago, I first started tapering off. I went from 0.5 mg to half of that, so 0.25mg. The effects astonished me - I felt alive! I was no longer lethargic, or even what I used to call "lazy" - and experiencing this energetic feeling made me realise that I wasn't actually lazy, I was sedated. About 4 days after I halved my dose is when I really noticed the effects. I travelled across the country using public transit, to go to an appointment that I was greatly stressed about. To my surprise, afterwards, I wasn't very exhausted, so I decided to go meet up with some people from the internet who I had wanted to meet up with. I did, and then in the evening, I went home..
..Surprise! The next day, I wasn't exhausted at all! In fact, I had enough energy to tidy up my entire house! And I did. I made sure to make use of this newfound energy. It was absolutely wonderful!
These effects lasted for a few weeks.. And I enjoyed every ounce of the newfound energy.

...But then they started to fall back to the same old lethargic state...
...Even though I was still on a lower dose, the same old effects were creeping back in. Gradually, every day, I felt more tired, more lethargic, more lazy......

..And now we're almost back to where we started.

Now, I have a theory.. And this is, of course, speculation.. But I think my body might have gotten used to the lower dose and adjusted to it accordingly.

---

So now comes the question about permanent brain damage. As you will probably notice, my use of language seems intelligent. I like to think that I am - although, of course, it is relative to the intelligence of others. I am bad at mental math, but great at some other intellectual endeavours, such as music theory.

However, the question of my damaged memory remains. As well as this lethargy that I so badly want to get rid of because it is basically preventing me from living a full life...

Since I've been on Risperdal for around 12 years, will I recover from these effects? Will the lethargy ever go away? Will my memory ever return to normal?

 

I have also heard a rumor that Risperdal can shorten your lifespan by about 20 years. Is that true? Will I die much earlier now?

I am, of course, very unhappy towards the people that did this to me. Well, unhappy is an understatement. I'm pretty angry at them - the difference being, that I am capable to handle my aggression and do not resort to throwing things around or damaging property or beings. Instead, my words get more aggressive, and I get really passionate about solving whatever issue is at hand. More rebellious, basically. I don't think that's such a bad thing.

Anyhow.. I hold the strong hope that I am able to recover from these debilitating effects. I'd like to add, that if any doctors are reading this.. PLEASE consider VERY CAREFULLY whether it is worth it to use Atypical Antipsychotics such as Risperdal on children with mild autistic disorders such as PDD-NOS. As you can read in my story, the long-term effects are not worth it, at all.

[Fresh]

Hi Melody , welcome to the site. You weren't kidding - that sure is a wall of words.

 

Please could you fill in your signature with dates / dosages of your drug history.

Instructions are here http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

We recommend tapering by decreasing no more than 10% of your dose at a time , then holding for 4 to 6 weeks.

You are displaying symptoms of hypo-mania since dropping your dose by 50% , then 50% again. However pleasant

it feels , you are having withdrawal symptoms.

It is most likely that within a few weeks you will crash. Bodily aches and pains , diarrhea , cold and flu symptoms , depressed mood ,

teariness etc.

 

You may want to consider updosing to the last level you felt stable at to try and head off the crash.

Once we have a summary of your history , we may be able to be more explicit.

 

Best wishes , Fresh

[Melody21]

Hi Melody , welcome to the site. You weren't kidding - that sure is a wall of words.

 

Please could you fill in your signature with dates / dosages of your drug history.

Instructions are here http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

We recommend tapering by decreasing no more than 10% of your dose at a time , then holding for 4 to 6 weeks.

You are displaying symptoms of hypo-mania since dropping your dose by 50% , then 50% again. However pleasant

it feels , you are having withdrawal symptoms.

It is most likely that within a few weeks you will crash. Bodily aches and pains , diarrhea , cold and flu symptoms , depressed mood ,

teariness etc.

 

You may want to consider updosing to the last level you felt stable at to try and head off the crash.

Once we have a summary of your history , we may be able to be more explicit.

 

Best wishes , Fresh

I'll fill in the signature

 

0.5mg is the lowest dose of Risperdal available, it is a pill. It can be broken in half, to 0.25mg, but my GP has said that there is no lower dose available. So how do I taper off by 10%, then?

 

I haven't dropped by 50%, then 50% again.. I've only dropped 50% once, so far. Is that potent enough to cause hypo-manis?

 

Also, I don't wanna go up a dose again. Never. I didn't feel stable at that dose at all.

 

Oh dear.. a crash... I'll brace myself...

 

EDIT: I don't remember the exact dates of when I was put on and taken off medications. What now?

[Fresh]

Sorry Melody , I had trouble with all the words and misunderstood. Also I made spelling error , meant to write

"Hypo-mania" not hypo-manis.

 

We have instructions on how to make a liquid solution from your tablets so you can taper down very slowly and carefully.

See the following links:

"Tips For Tapering off risperadone " http://survivingantidepressants.org/index.php?/topic/1716-tips-for-tapering-off-risperdal-risperidone/

"How to make a Liquid From Tablets or Capsules" http://survivingantidepressants.org/index.php?/topic/2693-how-to-make-a-liquid-from-tablets-or-capsules/

 

Essentially , if you dissolve one 0.5mg tablet in say 10mls of water , you can draw up any specific amount you choose.

0.25 mg of active ingredient would be 5mls of solution. So you can increase or decrease by tiny increments.

 

Please consider

1.a small updose till you feel normal again , and

2. switching to liquid for more precise tapering.

[Melody21]

Sorry Melody , I had trouble with all the words and misunderstood. Also I made spelling error , meant to write

"Hypo-mania" not hypo-manis.

 

We have instructions on how to make a liquid solution from your tablets so you can taper down very slowly and carefully.

See the following links:

"Tips For Tapering off risperadone " http://survivingantidepressants.org/index.php?/topic/1716-tips-for-tapering-off-risperdal-risperidone/

"How to make a Liquid From Tablets or Capsules" http://survivingantidepressants.org/index.php?/topic/2693-how-to-make-a-liquid-from-tablets-or-capsules/

 

Essentially , if you dissolve one 0.5mg tablet in say 10mls of water , you can draw up any specific amount you choose.

0.25 mg of active ingredient would be 5mls of solution. So you can increase or decrease by tiny increments.

 

Please consider

1.a small updose till you feel normal again , and

2. switching to liquid for more precise tapering.

Alright, I'll see what I can do with dissolving Risperdal and dosing carefully. I'll need to buy something to measure with... Won't it taste horrible, though?

 

For the updose, how much do you recommend? I don't want to go back to 0.5mg... In addition, I don't feel any worse now than how I was on 0.5mg, but I don't feel any better either - unlike when I first tapered down...

[Fresh]

Work out the dates as best you can. People don't have the concentration to go pouring through each post and

try to figure it out. Guess.

 

E.g Risperdal 0.5mg past 12 years. Dropped to 0.25 on 23 March 2016.

 

The fact that the initial high has worn off and your mood is on the way down indicates updosing will help.

How about we split the difference , and you go back to 0.375 / 0.4mg ?

[Melody21]

I'll try to guess the dates then and put the dates in there.

 

That dose sounds okay. What do you predict will happen? Will I feel better and more energetic?

How long would it take for me to completely get off Risperdal? If I follow the doctor's schedule, I will be completely off it by the 5th of May... I was very much looking forward to that...

 

Also.. I found out that Lexapro is a really strong SSRI through this forum... In that case my doctor lied to me, because she said it was one of the weakest. I was on 10mg for 6 months and tapered off fully about three-quarters of a year ago... could that also be why I've been completely knocked out?

[Shep]

 

Also.. I found out that Lexapro is a really strong SSRI through this forum... In that case my doctor lied to me, because she said it was one of the weakest. I was on 10mg for 6 months and tapered off fully about three-quarters of a year ago... could that also be why I've been completely knocked out?

 

 

 

 

HI, Melody, Welcome to the forum from me, too.

 

Yes, you still may be suffering from the Lexapro withdrawal. You're right - it's a very potent SSRI, so updosing and stabilizing on the antipsychotic makes even more sense. 

 

 

 

However, the question of my damaged memory remains. As well as this lethargy that I so badly want to get rid of because it is basically preventing me from living a full life...

Since I've been on Risperdal for around 12 years, will I recover from these effects? Will the lethargy ever go away? Will my memory ever return to normal?

 

I have also heard a rumor that Risperdal can shorten your lifespan by about 20 years. Is that true? Will I die much earlier now?

 

 

I took antipsychotics (both high and low dose) for nearly 30 years and am off now. I had severe memory problems from those as well as from my benzodiazepine use, but I'm getting better and better. You will, too. It just takes time. 

 

From everything I've read, the shortened lifespan from antipsychotic use is coming from the severe long term complications of these drugs such as heart problems and diabetes. I think you've got a really good shot at a very long and happy life by coming off these drugs now while you're still in your early 20's. 

 

 

 

 

 

I am, of course, very unhappy towards the people that did this to me. Well, unhappy is an understatement. I'm pretty angry at them - the difference being, that I am capable to handle my aggression and do not resort to throwing things around or damaging property or beings. Instead, my words get more aggressive, and I get really passionate about solving whatever issue is at hand. More rebellious, basically. I don't think that's such a bad thing.

 

 

The anger will get better as you recover. It's hard not to be angry when you're sick. Once you heal, life will take over. A new job, relationships, and life will take over and fill in the void. Focus on the good and what all you want to do when you heal.

 

Fresh has given you really good advice on updosing so you can stabilize before starting your taper. 

 

And here is a great section to learn about non-drug ways of coping. Lots of great information. I'm glad you are here for information and support.

 

 Symptoms and Self-care Forum

[Fresh]

Melody , I would expect that after a week or two of upping your dose , you'll feel more like

your usual self.

However , we suggest staying on this dose for a good month or two to allow your brain to recover ,

before starting to taper.

 

I'm sure the doctor's tapering package sounds attractive , but it doesn't account for the facts about protracted

withdrawal syndrome . i.e. that you can be sick for months or years from tapering too fast. You can read about

how that destroys lives on almost every thread in the Introductions section here.

 

You will need 2 syringes - one 10ml and one 3ml. Using the smaller one will make it easier to read how much

you draw up. And a small glass bottle. It keeps for a week in the fridge , so make up small batches.

 

Over the next few weeks , start reading ... knowledge is power. Recovering from stopping lexapro will mean

your cns is extremely fragile , and is probably quite susceptible to changes.

 

Take things slow , you can do this.

 

[Melody21]

@Fresh and @Shep: Thanks for the welcome! ^.^ A bit late, sorry about that

 

My usual self? Do you mean how I was before I got wrecked by meds?

 

Oh my god... so Lexapro threw me into a withdrawal period which I wasn't even aware of, which could even be the cause of the tiredness and lethargy to begin with?

 

I was very functional for a lot of years when I was on Risperdal. Basically from childhood to about the age of 19.

Then, about 2.5 years ago? I was severely hammered by tons of external stress in the period before Lexapro, but I was able to hold and endure. Once I got put on Lexapro, I began to break down really fast. I basically had a much more severe version of what I'm experiencing now. It was absolute hell, and both my parents and the doctor didn't believe that it was the Lexapro. But once I got off, I sure did clear up. I kept a diary of how I felt as I tapered off. When I was finally tapered off, I felt a lot better, but still not as good as before the Lexapro. Then I got on hormones. Then things got progressively worse. I am not sure whether it's the hormones or the lexapro withdrawal or the risperdal....

 

Until recently, we thought all of these things were because of stress, and stressful situations. But the stressful situations are gone, and so should the stress be. I've also worked on my social anxiety. But I'm still debilitated.. So that had me conclude that this must be something physical, and my suspicions were confirmed when I tapered off Risperdal and felt amazing.

 

I managed to recover the diary. I started tapering off Lexapro on the 7th of January, 2015. I went down 1 full mg per day. The diary stops at 5mg, and remains there for about 4 days. I think I stayed at 5mg before tapering off further about a week after.

Judging by the information on here... that is probably very bad, isn't it?

 

EDIT: Okay, just recovered information on when I started Lexapro. Apparently I've been on it for about 8 months...

EDIT2: Could a moderator please edit the thread title to reflect the fact that it's not only the risperdal?

[Melody21]

Hello everyone, it's been a while..

 

My doctor, and the people around me, pushed me to taper off quicker, so.. I tapered off Risperdal as per my doctor's instructions. Meaning I began at 0.5mg, went down to 0.25mg, and then, several months later... down to 0mg. May 5 2016 marks the date that I went down to 0mg.

 

I felt great again for quite a while. I was more active than i'd ever been, traversing around the country and socializing with friends. And that lasted for months.

But my life was full of stressful factors... and it got more and more stressful... and I felt very anxious... and eventually, at the peak of it all...

 

I got taken to the hospital by ambulance due to a sudden heart rhythm attack, which got diagnosed as Superventricular Tachycardia (SVT)...

Basically, my heart went above 200BPM, and didn't snap back into it's normal rhythm... this caused various symptoms that required immediate medical attention (next to the SVT itself)

 

I've had this earlier in life too, but back then, the SVT would stop in a few minutes. I didn't know what it was back then, and people assumed I was hyperventilating, or that it was a panic attack. But this time, it didn't stop and I had to be taken away with an ambulance.

 

Now i've been wondering if this might be related to the risperdal and/or lexapro somehow... I've searched the net a bit, and found out that Tachycardia is a fairly common side effect.. I'm not completely sure whether it is related, but I now know that there is a chance that it is.. I also know anxiety/panic and SVT are interrelated.

 

What do I do?...

 

Is there a chance I will ever heal from that tachycardia, IF it is medicine-induced?

 

The doctors say it was most likely there since birth and I would need an operation to remove it, but I am not 100% sure.... I have experienced the symptoms earlier in life, yes, but only after I got on risperdal.... I don't remember any heart palpitations before that... though that may also be because I was very young when I got put on risperdal (we're talking around 12 years old)

 

And is there a way to find out whether this tachycardia is the result of risperdal?..

[scallywag]

There is virtually no way to confirm with a high degree of certainty that your tachycardia was worsened either by taking risperdal or by discontinuing it.

 

What non-drug skills are you using to cope with stress and anxiety?  You may find good ideas in this topic:

Non-drug techniques to cope with emotional symptoms.