Godiswithme: I'm very scared

[JanCarol]

GIWM, this has been addressed by Alto and others, if not me.

 

There is concern that the tongue/jaw stuff can be induced by a neuroleptic and/or and antidepressant.  If it is truly TD, and not just a temporary muscle tic or spasm - there is a chance it could be very long term.  I could give you statistics, but they are just numbers.  But even a small chance of long term damage, is worth paying attention to. 

 

There is a higher chance that it was the neuroleptic (Abilify), but you have been on the escitalopram longer, which means it could be that.  

 

The symptom may be from the combination of the two, and may not come back if you reinstate just one.  It may not return at a low level of reinstatement (which is my and Bubble's hope).

 

Okay.  I will give you some numbers.  IF it is TD, there is 80% chance it was caused by Abilify, 20% chance escitalopram, but the escitalpram number goes up, the longer you take it.  IF it is TD, there is a 60-80% chance it will go away when you discontinue the drugs.   These are numbers I remember from reading Breggin, and should not be quoted or carved in stone.  They are estimates, based on case histories, of one doctor, albeit a prolific one.

 

Implied in this, is what the mods are afraid of:  if it is TD (and we don't know that it is) - there is an xx% chance that it will get worse again.  Yes, you read correctly:  xx% change.  We don't know.  We don't know if it is x% or xx%  (single or double digits).  We only know that there is a chance.  This is the caution you have heard from Alto and other mods, and why you've been cautioned against reinstatement.

 

The positive side of these numbers is this:  if you do a tiny test reinstatement, and it does start up again, you can quit right away, and at these low low doses, the harm should be minimized.  And even better - if you do a test reinstatement, and it helps - then - watch it for 4 - 10 days, and see if things get better.  It is possible.  And maybe this is the kind of hope you need.

 

Keep in mind what Bubble said, that it is not likely to be a "cure-all" or the end of your troubles.  The most a reinstatement can ever do, is take off the brutal edge of your suffering.  It won't eliminate it entirely, but might make it more bearable.

 

I'm sorry if this is confusing.  The mods are nervous and cautious about a reinstatement, but you are suffering.  So some of us are saying - if your suffering is unbearable, please only take tiny steps - don't do anything desperate.  Lexapro/escitalopram is a big, bad, bear, and needs to be treated with respect.  The hair of the bear that bit you - is the most you should ever consider.  (image in your mind:  20 mg escitalopram is the whole bear.  You only want a hair or two!)

 

I hope this helps.  Ultimately, only you can decide - and as Bubble implies - make your decision and stick with it.  There is a relief and benefit that comes from that, as well.  It is waffling and changing which creates waves of stress and fear of the unknown.  Choose your path:

 

1.  Stick with the xanax schedule, and hope it is enough, and be determined to suffer through it until you are ready to start reducing the xanax, or

2.  Stick with the xanax schedule (that's not really optional) and reinstate a tiny, tiny amount of Celexa/citalopram (that is Alto's and my preference, it is a less dangerous drug - but would require a trip back to the doctor) - at say, 0.5 - 1 mg.

or

3.  Stick with the xanax schedule (see above - not optional) and reinstate a tiny, tiny, tiny, tiny amount of Lexapro/escitalopram (it is so much stronger) - at say, 0.25 mg - 0.5 mg.  

 

You can always adjust the amount later, based on symptoms.  Choose door # 1, 2, or 3 - but decide, and stick to your decision.

 

Let us know what you choose.

[Godiswithme]

I couldn't ask for more info than that. Sincerely appreciated. Sad thing is she had me on 30 mg of escitolapram. I wasn't that depressed.

[Godiswithme]

Hello,

I am still trying to come to a final decision. Although I have evened out on the Xanax, I am not doing well enough to not consider relief, to say the least. I know I need to weigh the risks of the possible TD connection. And sincerely appreciate all of the info given.

Last question, if anyone knows:

I was told liquid Lexapro is 1mg = 1 ml. Is liquid Celexa the same? Thank you.

[Godiswithme]

Does anyone know if liquid Celexa is 1mg = 1 ml?

[ChessieCat]

According to this post:  - Solution, oral 2 mg/mL

[Godiswithme]

According to this post: - Solution, oral 2 mg/mL

Thank you so much.

[Godiswithme]

I can totally understand that. I wish I had considered my options this carefully. I was extremely scared when things started spiraling out of control so I went to a bigger dose than I was on before...

 

This is something we can't help you with unfortunately. I think we told you all we know. JanCarol's post is extremely valuable, Alto advised trying Celexa if you decide to reinstate.

 

Based on my experience and others that I've seen I would also be in favour of reinstatement provided you carefully monitor symptoms which might indicate TD.

 

On the other hand there are a few members who saw worsening of their symptoms after reinstatement. (Both of those that I remembered had vision problems. They stopped Lexapro and went on some other drugs and are a lot better now: Depressedtothecore and goldielocks). So even bad reactions didn't cause any harm in the long run. TD might be different but it's not clear from your description whether that was really it...

 

We also see people recover if they don't reinstate. So contrary to what may seem to you, you can't make a mistake. It's just a matter of picking your route and sticking with it. Whatever you do don't make sudden and rash decisions and changes. Those are most dangerous. Small changes which test the water keep you safe.

 

Also contrary to what may seem to you, you are very strong. You have survived through 3 months of suffering that most people can't even imagine. You found the source of valuable information. You will make it.

Hi Bubble,

Did you consider reinstating on Celexa rather than Lexapro?

[Godiswithme]

I am going to the doctor tomorrow to ask for the liquid escitalopram or Celexa. Although I have evened out the benzos, i am doing very badly. The panic and terror are incapacitating me. I have two teenage boys to take care of and lost my job. I am very afraid of TD. But, if life means being confined to one room for years? and still unable to eat, I need to take that chance.

I never wanted to do this. May I ask once I start with .25 or .5 mg, do I slowly go up - wait 4 days unless I get a bad reaction - and see how I feel? Is there an upper limit to the amount I increase after reinstating? Of course, everyone is different, just opinions? Thank you in advance.

[Godiswithme]

I just had a phone consultation with Doctor Stuart Shipko. I am very, very confused. He feels I could start as low as I feel comfortable, but does not think there is an upper limit. He said I may feel good at 5 mg., but I could then go to 10 mg in a few days. Then, wait two weeks and add 10mg. And even add 10 mg. after that. I don't want to stay on this drug, but I need to get my life back before I attempt a proper taper and I cold turkeyed from 30 mg. after two years. His advice doesn't seem to make sense to me? Please advise? My own new med provider doesn't seem to have any plan.

[Godiswithme]

You need to let your nervous system settle down. Symptoms should fade. Focus on working with the benzo.

Hello, I don't mean to be a pest. When you said symptoms should fade, do you mean symptoms of the possible TD or the rest of my symptoms? Thank you.

[Altostrata]

I just had a phone consultation with Doctor Stuart Shipko. I am very, very confused. He feels I could start as low as I feel comfortable, but does not think there is an upper limit. He said I may feel good at 5 mg., but I could then go to 10 mg in a few days. Then, wait two weeks and add 10mg. And even add 10 mg. after that. I don't want to stay on this drug, but I need to get my life back before I attempt a proper taper and I cold turkeyed from 30 mg. after two years. His advice doesn't seem to make sense to me? Please advise? My own new med provider doesn't seem to have any plan.

 

You need to listen to your body to determine the appropriate dosage for you. We suggest starting low and if necessary, increasing by very small amounts so you will settle at the lowest effective dosage.

[Godiswithme]

Thank you Alto for the response.

 

I am asking other people who have reinstated? Is it possible to gain a level of stability to be able to function as you did prior to a cold turkey? To not just lessen the severity of symptoms, but live a life? I realize this may not work for me. I thought I could tough it out. Big mistake.

[Shep]

Thank you Alto for the response.

 

I am asking other people who have reinstated? Is it possible to gain a level of stability to be able to function as you did prior to a cold turkey? To not just lessen the severity of symptoms, but live a life? I realize this may not work for me. I thought I could tough it out. Big mistake.

 

 

Hi, godiswithme.

 

Please re-read bubble's posts here and here. 

 

She has shared her own experiences about this, as well as mentioning a couple other members. 

 

Whether or not you will gain a level of stability that will allow you to go back to work is one of the many unknowns.

 

For some of us (including myself), we had to find another job that has less pressure in order to keep working throughout this. That might be something to explore. 

 

It may be a mix of things you can do with the drugs, as well as other life choices such as taking a job with less pressure and cutting expenses. With two teenage sons, that's no easy task, I'm sure. But there maybe things you can do to make your life gentler until you heal. 

 

I truly wish there was a better answer to all of this, but we really have given you all of the information we can as far as the drugs go. 

 

You may want to click on the tag for "lexapro" and read about other members and their journeys as a guide. 

[Godiswithme]

Hello Shep, thank you for the response

[Godiswithme]

 

I just had a phone consultation with Doctor Stuart Shipko. I am very, very confused. He feels I could start as low as I feel comfortable, but does not think there is an upper limit. He said I may feel good at 5 mg., but I could then go to 10 mg in a few days. Then, wait two weeks and add 10mg. And even add 10 mg. after that. I don't want to stay on this drug, but I need to get my life back before I attempt a proper taper and I cold turkeyed from 30 mg. after two years. His advice doesn't seem to make sense to me? Please advise? My own new med provider doesn't seem to have any plan.

You need to listen to your body to determine the appropriate dosage for you. We suggest starting low and if necessary, increasing by very small amounts so you will settle at the lowest effective dosage.

 

May I ask just one more question? How will I know when to stop increasing?

[bubble]

How about crossing this bridge when we get there?

 

The short answer is: through careful monitoring of symptoms. But you have to take this one day at a time. There really isn't much use in speculating about future.

[Godiswithme]

Thank you Bubble.

[Godiswithme]

Hello,

Would anyone care to comment on the medical advice given to me by Doctor Shipko? Does it sound dangerous? I thought he was a doctor who was familiar with the situations we are all dealing with? Thank you.

[Godiswithme]

Hello, Are there similarities between updosing during a taper and initially reinstating? As in, increasing amounts during a reinstatement to find the best spot to hold temporarily?

Are they basically the same thing?

[Godiswithme]

Please, can someone answer? Does the fact I was on Lexapro for two years and Abilify for 8 months mean anything at all in terms of how long to recover? I know there is no definite answer, but does how long you were on help chances of a shorter recovery? Or would my C/T and high dose of Escitalopram cancel that out?

I C/T. And Escitalopram was a high dose of 30 mg. and Abilify 2 mg.

[mona11]

I don't have an answer for you, but because I know how desperate you are, I thought that I could help with some words from the heart. Less than 1 year ago, exactly like you, I was trying to find answers for things that had no answer. Trying to compare my case to other cases, but actually doing nothing good to improve my situation. And getting more and more scared and helpless. And then I saw a therapist and started doing therapy 3 times a week. That was huge. She showed me how to deep breath when the only thought I had was that I was never gonna be able to have my life back again. I would feel better during the session, like getting calmer and with some hope, just to go home and feel hopeless and desperate again. At the same time I was already reinstating the medication. Long story short, it took me 3 months for the therapy and medication put me in a place that I could sleep a little during the night, that I didn't have hot flashes every 30 minutes, that I could drive, that I could stop crying, that I didn't have my brain and my skin burning all the time... I don't want to go on with my symptoms because if you don't have them, you can think you will have them. We are all different, so we never know if something that worked for somebody will work for us. But, something that works for everybody is to get calmer and trust that things are going to be better, and have somebody that help us to start getting calmer and believing again in ourselves. This therapist I'm seeing ( now only once a week), doesn't know a lot about WD, but she was willing to listen to my fears and help me with sorting them out. The way you are feeling now, and I was last January, we are just not able to understand that nothing stays the same. Everything changes and thoughts are not always true. They are thoughts and we can't pay much attention to them, because they make us more and more sick. Also, when we are panicking and sick, we fell like we can't decide about anything, and this indecision hurts us a lot. I had the help of this therapist to decide about some important things. She would ponder with me and I would decide, it was good. At the end of this month, it will be one year since the time I decided to go on the medication. I was very very sick. I still have some WD symptoms, I have some side effects of the medication, but I'm living my life. I'm volunteering in 3 different places, im taking care of my kids, I'm taking care of myself and my house, I'm driving, I'm sleeping, and I already started tapering my medication. Slowly taper, in two months I went down less than 5%, because I start a 1% taper every 2 weeks. You can do this. You can getter better and you will. Just believe that you can get better and act. You can find a therapist and start your journey to recover. You can figure your way out of this WD, and use everything you read here and all the help you get here to feel better and better. My English is not the best, but I wanted to speak to you from the heart. You will be fine.

[Godiswithme]

Thank you Mona

[Godiswithme]

I just reinstated 1ml Of escitalopram. It is .5 more than recommended. So I started a journal and will do this for the next 3 days. Of course, I will stop if I get any TD symptoms. Is there anything else that would make me stop immediately? Do I need to keep the next 4 days at 1ml ?

[bubble]

Yes, keep the dose steady. Take the same dose at the same time and take notes of the symptoms.

 

Good luck!

[Godiswithme]

Thank you Bubble

[Godiswithme]

Ok, if I would like to, can I take less tomorrow? Like .5 mg.? Instead of 1 mg.? I feel very strange. Or is it more important to keep it constant? My stomach and my chest don't feel the horrible anxiety, but I feel very, very speedy - amped up. Uncomfortably so.

I would really appreciate an answer?

[Godiswithme]

I think I made a mistake. Please tell me if I can drop the amount tomorrow. I should not have listened to my family. If I want to stop, I just stop today? No tapering, right? Will I have a problem?

[Shep]

If you just reinstated today as you mentioned here, than you've only had one dose. Is that correct?

 

If you've only had one or two doses, yes, you could just stop.

 

Or you could take .5 mg instead of the full 1 mg and see if that works better.

 

I wouldn't spend too much time moving doses around, though. Consistency is best. 

 

It takes a minimum of 4 days to a week for your CNS to register the reinstatement. 

 

Please let us know what you decide to do and how you feel. 

[Godiswithme]

I feel VERY speedy. It's scary. I have never felt like this and I was on 30 mg. when I cold turkeyed.

How can this make sense? I will not play with dosing.

I will go down. This is my first dose. Should I take .25 if I feel this uncomfortable? Thank you

[Shep]

Yes, you may want to drop to .25 mg. You can always increase later. 

 

If you still are being ramped up and you feel it's at a "dangerous" level, then you may not be able to reinstate. It will be safe to stop anytime within these first few days that you're trying a reinstatement. Your CNS is very, very destabilized and is over-reacting. 

 

Where are you today with your Xanax dosing? Do you have a dose or two to take today / tonight? Please be mindful and not take rescue doses unless it's absolutely necessary. Try an epsom salt bath, gentle music, lavender oil, a favorite old movie, a guided meditation. 

 

 

[Godiswithme]

Thank you. Will you please tell me what you mean by dangerous because this whole thing is scaring me.

I will not take rescue doses.

[Shep]

That's a very good question, GIWM.  I'm using the term "dangerous" because you state "I feel VERY speedy. It's scary. I have never felt like this and I was on 30 mg. when I cold turkeyed."

 

I used the word "dangerous" because I don't know how you're going to act in this state. This sounds like akathisia, and some people become very suicidal and sometimes even violent with akathisia, so it's not a symptom to play around with. 

 

We just want you to be safe. So if these emotions are overwhelming and you feel out of control, then you either need to consider reducing the dose or stopping it. Since this is an online forum, it's hard to gage beyond the text communication to know how severe this is. From your statement, you feel worse than when you cold turkeyed, so I'm guessing it's really bad. 

 

Are you feeling out of control or just revved up, like you swallowed a dozen cups of coffee and a few Red Bulls? 

 

[Godiswithme]

Very very very revved up. I took it at 1:30 PM. I am not out of control. not worse than C/T. just very different.

Could this get worse before next dose, do you know? If I take another dose, it is going to have to be much much less. Getting pressure from family. They wanted me to take a full milligram.

[Godiswithme]

Could I have just damaged myself/my CNS further by doing this?

[mona11]

Sorry to ask you, but you first said that you took 1 ml, and then you said that you took 1 mg. How much did you take, 1 ml or 1 mg? If you took 1 ml you need to check the amount of mg you have in that ml. Remember, mg and ml are different units. Some liquid medications are just 1ml for 20 mg. Some others are 1 ml for 10 mg. If you took 1 ml, depending on the mg that you have in that ml, maybe you really took too much of it. Don't be scared if you made this confusion, Just let us know and we can help you to get the correct dose for your next time. Everything is going to be fine.

[Godiswithme]

It is 1mg = 1 ml. This is very bad.