LeoD: escitalopram protracted tapering

[LeoD]

Hi All, 

I was prescribed Lexapro in 2006  as a treatment for CFS-like symptoms: tired and sleepy all the time in the absence of any “medical” abnormalities. The ssri helped my functioning a bit, but never relieved my symptoms- i just learned to live with them. Kicking myself for starting it, I wish I new better. Tried to quit relatively quickly a couple of times (over a month or so), but became so tired and depressed- had to re-install. Last time I thought I would do it right- have been tapering off for 16 months, finished at 0.5 mg, stopping and waiting as needed. In early April 2018 i thought I was free... In May the withdrawal started. Horrible. Chills. Insomnia. Cognitive symptoms - memory, concentration. Weight loss- 30 pounds in 2 months. Then heavy depression quickly came on board. In July 2018 I re-instated to 10 and in Nov to 15 mg. Sleep is now a bit better, the rest of the symptoms are worsening. Help? 

[SkyBlue]

Hello, Leo and welcome to SA.

 

It is definitely possible to come off Lexapro. It sounds like you have come off too quickly in the past, and have been hit with withdrawal symptoms. Most people do best with a gradual taper--more info here: https://www.survivingantidepressants.org/topic/1024-why-taper-by-10-of-my-dosage/

 

 

Please fill out a brief drug signature, using these instructions, giving a list of dosage changes and dates (month and year is fine). https://www.survivingantidepressants.org/topic/18343-please-put-your-withdrawal-history-in-your-signature/

 

When we know a bit more about your situation, we can go from there.

Again, welcome. 

 

[LeoD]

Hi all, 

Out of desperation I consulted with a couple of psychiatrists... They do not belive in Lexapro protracted withdrawal, of course. Suggested to try Welbutrin because apparently i am depressed and Lexapro is not for me ((. Any chance it may help the symptoms? Do not want to take another drug, but... 

Thoughts?

[SkyBlue]

Were you able to read my reply, above?

 

No, we won't recommend Wellbutrin, or any psych drug. Everyone here has been grievously harmed by psych drugs.

 

Begin by reading the topic I linked to above; you can also look on this site for non-drug coping techniques, which are going to be necessary if a person wants to come off successfully.

[LeoD]

Yes, SkyBlue, I can read your replies, thanks! So is it established that meds can not help with the withdrawal symptoms? Do not get me wrong, the last thing I want is to get addicted to yet another poison. However the withdrawal symptoms are debilitating and I am desperate to be able to function... I am back on Lexapro now, with very little relieve. So my thinking is... if I have to be on a med, at least be on something that is helping, at least temporarily. Am I totally missing the point?

you should see my signature now

[LeoD]

Also, very importantly... after reading this site i think i know now that I had re-insralled Lexapro too quickly. I basically rushed to get back to 10 mg and then To 15 mg hoping the terrible symptoms would go away... they have not. When should I start tapering the drug off again? I am now very depressed (WD), with wierd thoughts, no energy, chills, etc. Do I wait fir these symptoms to subside? Or do I start tapering now?

thanks!!!!

[ChessieCat]

What date did you updose to 15mg in November.  Please add the date to your drug signature.  Thank you.  Account Settings – Create or Edit a signature

[LeoD]

Nov 7th 2018 I increased Excitalopram to 15 mg.

[ChessieCat]

What time do you take your escitalopram?

 

What are your current symptoms?

 

Are you symptoms worse at different times of the day?

 

If yes, when?

 

Do you have times during the day when your symptoms improve?

 

If yes, when?

[jozeff]

Hi Leo,

 

I'm sorry you're suffering this much. 

 

Off course the doctors wanted you to take another drug. Classical story unfortunately.

 

I hope you will find a way to decrease your symptoms. I'm sure some people here will be able to advise you. 

 

I take citalopram myself but never jumped off to zero and then started taking it again. I tapered too fast and that was very hard. Very strange thoughts, anxiety like I was dying, crying like hell....i know how it feels.

 

You will get better with the right advise. It will take a while but you can and will be better.

 

Good luck.

 

 

Jozeff

 

 

 

 

[LeoD]

10 hours ago, ChessieCat said:

What time do you take your escitalopram?

 

What are your current symptoms?

 

Are you symptoms worse at different times of the day?

 

If yes, when?

 

Do you have times during the day when your symptoms improve?

 

If yes, when?

I take it before bed.  Always have, even before the wd. When i was off it (june-july 2018), i had terrible insomnia, basically could not sleep at all. On it I sleep... stlill wake up tired, but at least sleep.

 

Oh, those symptoms. As you guys know, they are hard to describe in “normal” human language. Depression is bad, never experienced it before wd.  Thoughts coming up about not wanting to live (scary, it is like they are not mine). Feelings of dread, it’s like something terrible is about to happen... all the time. Ruminations about my condition, and how to fix it, and where I am going... my family...  No interest in anything else...

Bad cognitive issues, brain fog, focus issues, memory. Every day at work is a struggle, just waiting for the day to be over, while pretending I care (i am a manager in.a technology company)- very stressful and debilitating! 

Symptoms are better in the morning and worse in the pm. Coffee helps with cognition, i try to meditate throughout the day and nap if possible (sometimes in the car during work hours) This helps to get through the day).

 

Windows are rare. May be a couple of partial days a week. 

 

This is scary and debilitating. I know there are many people who are suffering here, so I feel bad complaining about myself. Just desperate for a solution. Should I updose, taper, stay on 15  mg untill something happens(what would it be?) 

Doctors are suggesting Welbutrin or  stimulants to help with energy and cognition. I am MTHFR -/- , and also have the short version of SERT - a bad genetic combination. 

[LeoD]

7 hours ago, jozeff said:

Hi Leo,

 

I'm sorry you're suffering this much. 

 

Off course the doctors wanted you to take another drug. Classical story unfortunately.

 

I hope you will find a way to decrease your symptoms. I'm sure some people here will be able to advise you. 

 

I take citalopram myself but never jumped off to zero and then started taking it again. I tapered too fast and that was very hard. Very strange thoughts, anxiety like I was dying, crying like hell....i know how it feels.

 

You will get better with the right advise. It will take a while but you can and will be better.

 

Good luck.

 

 

Jozeff

 

 

 

 

Thank you Jozeff, for the kind words of encouragement. Are you better now then before?

Also, on your profile you mention that you take 5 mg Li. Is it helping you? It is smething doctors are recommending me, they say low dose Li is now cutting edge for anything mental again. Do you feel better with it?

[Altostrata]

Hi, Leo. After you increased to 15mg, did you feel better or worse?

 

Sleeping is a good sign. What is your sleep pattern?

 

Do you get symptoms at any particular time of day? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

This helps determine if the dosage is too much.

[LeoD]

Hi Alto! Thank you for doing this, we are all so lucky to have you!

I felt better for a day or to (may be the placebo effect), and then back to feeling as crappy as on 10 mgs. 

Sleeping: i am always tired, this chronic fatigue got triggered by an infection 15 years ago- got prescribed Lexapro for this. So i fall asleep quickly. Wake up a few times through the night and often early in the morning, but at least I sleep now that i am back on the drug. Increasing from 10 to 15 mg did not change anything. Please see my response to Chessie 10h ago about the syptom specifics. 

Should I start tapering again, or wait for stabilization? How will inknow that i stabilized?

[ChessieCat]

9 hours ago, Altostrata said:

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

This is a request for DAILY notes as per the following example:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

[jozeff]

Hi Leo,

 

Thanks! I dont feel better than a few months ago to be honest.

 

I'm still trying to stabilize on 18 mg citalopram. It's hard because i want do get rid of these pills eventually. The problem is that I have been going up and down in dose and that i'm pretty sensitized to this stuff.

I too have the question: is this WD or is this just my old problem coming back. It is all getting so fuzzy and the months go by without changing symptoms much. Time will tell. I'm a bit impatient and want to try things too soon.

 

Lithium I will not advise actually because it is very individual and I don't want people to take things without medical advise. I take 1.5 mg every day now. Some say it's great for mood but others say it might be toxic in long term.

 

The idea is that for thousands of years people drank water that contained a small amount of Lithium but nowadays it;s completely removed from tap water.

 

Some say that the pharmaceutical industry doesn't want people to be too happy so the lithium story is kept a secret....

 

The only things people advise here are Magnesium and Fish oil. I would stick to that for now if you can handle it.

 

 

So Leo, are you feeling a bit better now? 

 

You will find a way to deal with things. Whether it's stabilizing on 15 mg or tapering.....things will be working out for you as well. Patience is the most important thing here.

wish you the best!!

 

Jozeff

 

[LeoD]

Jozeff, as you know it is fuzzy, convoluted and complicated. It is a combination of old (before drug) symptoms coming back with a vengeance (for me it is tiredness, chills, and cognitive issues, i guess this is my weak spot because of that infection), all much worse than before the wd. May be Lexapro was helping with those and now that i messed up the CNS by going off and on the drug it is not anymore? Or maybe this is my weak spot and the wd hits it the hardest? 

 

New symptoms, like the feeling of dread, anxiety, tightness around the head, obsessed thinking. Started happening at the onset of the wd, not really getting better. Learning to live with them, activity, distraction and meditation are key.

 

Depression and thoughts of death came later, months after the onset of the wd: may be as part of wd, may be as a reaction to the wd symptoms- life is hard, so one gets depressed, right? 

 

so hard to say. Living day to day, trying to enjoy life despite all of this. Who knows what’s around the next turn... The instinct is to fight this, to do something about it, to adjust the dose, to taper, to reinstate, to increase, to try another drug, another supplement... because if i do not do something NOW, i will not survive this. Coming to realize that may be the only thing i can do is wait. But this is very tough since it is open ended- wait for how long untill i get my life back? What if i already stabilized, and this will be my baseline unless i do something? 

Familiar?

 

 

 

 

 

[Altostrata]

19 hours ago, LeoD said:

I felt better for a day or to (may be the placebo effect), and then back to feeling as crappy as on 10 mgs. 

 

Do you have Lyme Disease?

 

You might want to increase to 16mg Lexapro, see if that helps. Could be you need more rather than less. Please let us know how you do.

[LeoD]

Alto, what makes you think that i will be better on 16 mg of Lexapro, than 15 mg? This is a very potent drug with the typical therapeutic dose of 10 mg... Last time i was on 20 mg was in 2016. When i tapered down to 10 mg in 2017 i was feeling ok... Also, according to genetic testing i am a slow metabolizer of Lexapro, so have more in the system than an average person starting from the same dose. Are you sure going up is a good idea at this point?

 

Lyme- got tested and result is negatve. Of couse may be a false negative, becase i am positive for a few Lyme proteins but not enough to pass the positive treshhold. Anyway, if i had Lyme 15 years ago, nothing can be done about it now, right?

[Altostrata]

"Therapeutic dose" is irrelevant, that's an assessment by drug companies to decide what size tablets to make.

 

20 hours ago, LeoD said:

I felt better for a day or to (may be the placebo effect), and then back to feeling as crappy as on 10 mgs. 

 

^You felt better after an updose, then the improvement disappeared because the increase leveled out in your bloodstream. A little more might do the trick, but you don't want to overshoot the amount that may relieve withdrawal symptoms. Too much drug can trigger kindling.

 

Therefore, if you make a trial updose of 1mg and carefully observe the results in daily notes, which you will post here. you can see if what you need is an increase -- in terms of relieving withdrawal symptoms.

[LeoD]

What is kindling?

[jozeff]

I didn't know either and this is what I have found.....

 

 

When a person quits medication and then takes them again several times, they are at risk of developing kindling. This condition is a worsening of withdrawal symptoms each time the individual attempts to quit the substance again. The body becomes increasingly sensitive to changes in neurotransmitters.

[Dylanmatthew]

On 12/10/2018 at 2:09 AM, jozeff said:

I didn't know either and this is what I have found.....

 

 

When a person quits medication and then takes them again several times, they are at risk of developing kindling. This condition is a worsening of withdrawal symptoms each time the individual attempts to quit the substance again. The body becomes increasingly sensitive to changes in neurotransmitters.

So reinstatement has its risks. That's too bad. 

[ChessieCat]

3 hours ago, Dylanmatthew said:

So reinstatement has its risks. That's too bad. 

 

See Post #1 of this topic for information about reinstatement:  About reinstating and stabilizing to reduce withdrawal symptoms

 

On 12/10/2018 at 7:09 PM, jozeff said:

When a person quits medication and then takes them again several times, they are at risk of developing kindling. This condition is a worsening of withdrawal symptoms each time the individual attempts to quit the substance again. The body becomes increasingly sensitive to changes in neurotransmitters.

 

Please don't start worrying about this.  It might happen when people go on a drug, off a drug, on again (or a different drug) changes the doses up and down a few times, updose or reinstate too much.  The brain can end up becoming very confused about what it needs to do because it's always trying to adjust to the chemicals a person is taking and it's always trying to regain homeostasis or factory settings.

[ChessieCat]

I found this topic by using google and searching for:  survivingantidepressants.org kindling

 

post-withdrawal-nervous-system-hypersensitivity-or-kindling

 

[LeoD]

Hi All, 

Let me share, may be someone had similar experience... I started feeling better. What I mean by that is that it stopped being horrible all the time. In January have reached the point when it was bad every other day, meaning that i started having ok days every other day. A huge improvement, i wad si happy! It was much easier to survive bad days knowing that tomorrow will be ok-ish. And then the windows ended. Bad days after bad days again, with no relief for a week now. What did i do wrong? Is it the weather, the diet, just normal wd fluctuations? Thanks!

L

[withhopeinmyheart]

Hi Leo, 

 

I'm sorry you're suffering. 

If you didn't change anything in your routine, you're going through the typical windows and waves pattern. Unfortunately this does not work gradually. Waves can get longer and harder again, but you can also get sudden windows. 

 

That you had good days is a good sign. 

Keep going this difficult road to stability. 

[jozeff]

Hi Leo,

 

I'm sorry you are struggling so much.

 

Each time when we think we are seriously healing there is a wave on our path. I had clear windows 3 days but today is Terrible suddenly.... No change in diet, supplements, sleep ....just nothing. Just a wave and suffering!

 

I think you are on the right track. You had some good days and that's a good sign. The disappointment is hard each time, I know. You will have to believe in your healing. You tapered not extremely fast so there is a lot of hope for you. 

 

Have faith in your healing, I'm on celexa too and it is pretty awful stuff. You tapered 16 months and that's way longer than most people did so you did absolutely the right thing.

 

 

Hang in there !!

 

 

Cheers

 

Jozeff

[LeoD]

12 hours ago, jozeff said:

Hi Leo,

 

I'm sorry you are struggling so much.

 

Each time when we think we are seriously healing there is a wave on our path. I had clear windows 3 days but today is Terrible suddenly.... No change in diet, supplements, sleep ....just nothing. Just a wave and suffering!

 

I think you are on the right track. You had some good days and that's a good sign. The disappointment is hard each time, I know. You will have to believe in your healing. You tapered not extremely fast so there is a lot of hope for you. 

 

Have faith in your healing, I'm on celexa too and it is pretty awful stuff. You tapered 16 months and that's way longer than most people did so you did absolutely the right thing.

 

 

Hang in there !!

 

 

Cheers

 

Jozeff

Jozeff, thanks for being out there supporting me every time! 

I am worried that I am back on 15 mg Lexapro and i have no clue how it is affecting me and my recovery. But i am afraid to start tapering again. So it is a catch 22.

 

How are you doing? 

L.

[LeoD]

Windows came back, this is so reassuring! Had 2 days in a row when I was almost myself, most of the time at least. I know waves will come, but having windows makes me stronger.

Ordered a fancy pill cutter, getting ready to start tapering again, this time ever so slowly...

There is hope, people!!!

[JLex1981]

Did you sleep and appetite improve ? Usually if that happens your on the right track, can take awhile several months to stabilize 

[bubble]

That's great Leo! 

 

I would wait with tapering. Many of us make this mistake of start tapering just as our brain finally starts reeling from everything it's been through. It often backfires and even if we manage to cut, the cuts are small and painful. Better give the brain more time while enjoying improved functionality. 

 

How do you plan to taper (when the time comes)?

[ChessieCat]

I agree with bubble that it would be a good idea to wait a bit longer before tapering.  Make sure you give yourself a good, stable start to begin with.

[LeoD]

Hi All,

Thank you for your help and advice. ChessieCat and Bubble, you were correct, I may have started tapering too early. I was on 15 mg of Lexapro (got back on it after a long 18 month taper when a  bad wd started).. Now on the drug, and fighting wd. Finally, after many months started having good windows with some intermittent waves. Feb 15 decided to cut the dose slightly, to 13.25 mg. By Feb 18 started feeling worse (depression, brain fog, chills, weird automatic thoughts), and last night could not sleep at all (been sleeping ok for a few months now). Is this a crash? Should not have started tapering? 

What should I do now, go back to 15 mg ASAP or try to survive this bad wave and see what will happen? I really did not think that changing the high dose (15 mg) to a slightly lower but still high(13.75 mg) may make such a difference. When I tapered last time, going from 20 to 10 mg in 6 months was not a problem, the problems started when i came down to 5 mg and below too quickly (over 6 months)  I very much want to be off the drug, but I realize the road ahead will be long and bumpy. So, what's your advice, go back to 15 mg ASAP or wait it out (~1-2 weeks) and see what happens on 13.75 mg? I am worried that  the updose may not work if I wait too long and I will be stuck with these symptoms again and a higher drug dose.

 

Thank you all so much, and wishing all of us a good day 

LeoD

[ChessieCat]

The question I ask myself if my symptoms worsen and I know it is from reducing too much/too soon is:  "can I put up with these symptoms if they stay the same for a while?"  If the answer is yes, then I hold for longer.  If the answer is no, then I updose a small amount, not back to the previous dose.

 

You are taking 13.25mg started on 18 February.  That's only been 3 or 4 days.  It takes about 4 days for a dose change to get to steady level in the blood and a bit longer for it to register in the brain.  If the symptoms are unbearable then you could try a small updose to 13.5mg or 13.75mg.  If the symptoms are bearable and you are able to put up with them, then you could hold for another few days and see if they improve.

 

It's not unusual to get an increase in withdrawal symptoms after making a reduction.  The brain, after all, is having to adapt to not get as much of the drug.

[LeoD]

Thank you Chessie! I will try to resist updosing as much as I can, though honestly i have not felt that crappy in awhile, and i am not sure such a small gain (15 to 13.75 mg) is worth the torture. 

Getting work done through this depression/brain fog is superhard😩.

Tell me, is there a time period after which an updose does not work anymore? Do not want to miss this window and and up updosing with no benefits. 

Also, it has been 5 days since i decreased the dose of Lexapro, and it was ok for 4 days, but yesterday it was much worse, then a sleepless night, and today is the worst day in a few months. Is this really expected when only decreasing a high dose by 10%? When will i know whether this will improve or not?

 

sorry, i may be repeting the same questions, clearly not thinking clearly )))

 

With the best wishes,

LeoD.