jbird: withdrawal from intermittent SSRI for PMDD?

[jbird]

Hi everyone,

 

After a week of lurking here, I was motivated to join to ask for some advice for my particular situation. Everyone here is so helpful and supportive, and I'm hoping that someone has some insight into what's been happening to me! I think most of the main information is in my signature, but in short, I've been taking 5mg escitalopram intermittently since 8/2017 for bad PMDD symptoms. I start taking it at D14 of my cycle, and continue until the next one begins. It has been helping me deal with depression and mood swings quite well until recently. The last cycle I thought it may not be working, and would that I had just stopped then!!

 

This past cycle, I again stopped taking it at the usual time, and about a week later felt like I was hit by a truck - vertigo, balance issues, blurry/double vision, nausea. After a few days of suffering, I realized that maybe this was withdrawal, so I reinstated back at 5mg on 6/26, a few days earlier than I normally would have. The vertigo has been more tolerable, but the other symptoms remain in force and are dramatically interfering with living my life. I feel like I walk around drunk and half blind the majority of the time. I'm due to stop taking them again in another week, but I'm so lost on what to do next..

 

1- should I take them continuously from here on out & begin to taper if/when everything stabilizes?? or..

2- stop taking them in a week & just see what happens? or..

3- modify the dose up/down?

 

I have had multiple blood tests and nothing abnormal has been found, and am waiting on an appointment with a neuro-ophthalmologist referred to me by my PCP. The double/blurry vision is the scariest symptom for me - I have had glasses for years so I'm comfortable with my poor eyesight without them, but this is awful!! I'm worried that it won't get better, even though I know its only been a little over a week. 

 

Thank you for taking the time to read all this, and I would love some advice on the best path forward ☺️

 

-jbird

[Songbird]

Hi jbird, welcome to SA! 

 

I'm sorry to hear you're having a rough time with horrible symptoms.  I've never really understood using SSRIs for just a few days per month for PMDD, as they are not drugs that can just be started and stopped over and over like that.  I'm sure it must be very confusing for all the body's systems trying to maintain balance.  Are you taking any other meds, or just escitalopram?

 

Please can you create a signature containing a summary of your med history, including all drugs, doses and dates (starting and stopping).  Your signature appears below every post you make, and helps us see your situation easily without having to read from the top every time.   Instructions for creating your signature are here: Please put your withdrawal history in your signature.  You can edit your signature here: edit your signature in Account Settings.  

 

Please post your updates and questions here in your introduction topic and we will try to help as best we can. 

 

 I'm really not sure on the best path forward, but will see what other mods think and we'll reply to you here.

 

 

[jbird]

Hi Songbird, thanks for the reply! I updated my signature, so hopefully that helps!

 

I hear you on questioning the intermittent SSRI use.. I was really hesitant at first, but then I talked to my doctor and read a bunch of papers about it, but honestly it got to the point where I was just really desperate to stop feeling so depressed/suicidal for 2 weeks out of every month. It was kind of like a catch 22, choosing the lesser of two evils I guess? I am definitely regretting it now. The drugs must have just built up over the past year or so to a critical mass? 

 

The only other things I'm taking right now are a multivitamin, allergy meds as needed, and B12 supplements. I've already talked to my doctor and he is willing to prescribe liquid escitalopram if i want/need to taper. Just not sure what to do! 

[Altostrata]

Welcome, jbird.

 

That sure sounds like Lexapro withdrawal. It's unlikely a neuro-ophthalmologist or any neurologist or psychiatrist will be able to see anything to treat, unless that doctor is the exception who understands withdrawal syndrome.

 

Are your symptoms better or worse at any particular time of day? When do you take 5mg Lexapro? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

What we've seen is that going on and off psychiatric drugs eventually makes the nervous system hypersensitive to all neuroactive substances, including psychiatric drugs. It could be that 5mg Lexapro every day is now too high for you, your symptom pattern will indicate that.

 

I might get prepared to ask your doctor for the liquid Lexapro prescription so you can more carefully titrate the dosage down to the lowest effective level.

 

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you.

[jbird]

Dear Altostrata, I appreciate you sharing your wisdom with me, thank you. The appointment isn't until the 26 of this month, so maybe I will cancel it and save $135 on doctors telling me they don't know what's wrong!

 

My symptoms seem to worsen throughout the day, but lying down for awhile can ease them a bit. Sleep deprivation also makes them a lot worse. Two nights ago I couldn't fall asleep because we thought there may have been a bat in our apartment (have had several make it in this past year), so yesterday was really tough.

 

I take 5mg Lexapro at the very end of the day before bed, usually around 10:30/11pm. I think I will ask for the liquid Lexapro asap and taper down to 4.5mg to see what happens. I looked into the links you posted, and was surprised to find that my multivitamin does not have magnesium in it, I wonder why? I do take epsom salt baths occasionally, so maybe I will take one later tonight and see if it has an effect!

 

 

[Songbird]

16 hours ago, Altostrata said:

Are your symptoms better or worse at any particular time of day? When do you take 5mg Lexapro? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

Here is an example of the kind of daily journal that can help us to better understand your situation (note this is a made up example):

 

23 June

7 a.m. woke up, anxiety 3/10

8 a.m. ate breakfast, took 20mg Prozac tablet

10 a.m. anxiety 7/10, nausea 3/10

12 p.m. ate lunch, anxiety 5/10, nausea 1/10

2 p.m. anxiety 4/10, nausea 2/10

6 p.m. ate dinner, took magnesium tablet 200mg, anxiety 2/10, no nausea

8 p.m. anxiety 1/10

11 p.m. went to bed, anxiety 2/10, difficulty falling asleep for 2 hours

4 a.m. woke up, no anxiety, went back to sleep for 3 hours

 

Please include any other meds and supplements.  What allergy meds are you taking?

[jbird]

Busy with family yesterday, but I'll give the journal a shot! The past few nights (starting 7/3) I've been filing down my 5mg escitalopram to ~4.5mg.

 

7/4/18

10a woke up

12p breakfast; took multivitamin, generic zyrtec, B12 vitamin; dizziness 3/10

1-2p anxiety 6/10, depressed about blurry vision & withdrawal in general

3p arrived at parents house, dizziness 4/10

4-6p snacking + dinner

8p anxiety 2/10, dizziness 2/10, put in gel eye drops, blurred vision seemed a bit better (!! maybe this is just dry eye?)

11p took ~4.5mg escitalopram

12a bed, took ~30min to fall asleep

6a woke, dizziness 5/10, couldn't really get back to sleep, alarm at 7 for work

 

I've been feeling a bit better overall, and was even able to do a 20min low impact workout 2 days ago, something that I wouldn't have dared to do a few weeks back! I did feel a bit nauseous afterwards, but only about 3/10. Posting here and reading others' stories has actually improved my morale a lot recently, and given me hope that this is only temporary. 

[jbird]

7/5/18 - blurred vision constant throughout the day, seems to be worse when looking left (?) but also appears to be improving a little - gel drops in eyes 3x a day

 

7a woke, dizziness 3/10

7:30a breakfast, multivitamin/zyrtec/B12/D3 supplements

10a dizziness 3/10, "heavy" feeling in brain

12p lunch

2p dizziness 4/10, nausea 3/10, heavy brain feeling (was spending a lot of time on computer work)

6p nap, difficult to wake up at 7:30

8:30p dinner, dizziness 2/10

11p ~4.5mg escitalopram, fish oil tablet, 2.5mg melatonin

12a fell asleep pretty quickly, despite some nausea 2/10

 

 

[jbird]

So I just picked up liquid escitalopram for tapering from the pharmacy, finally. The past few days I have been trying to file down my pills to ~4.5mg since Alto mentioned my nervous system may be hypersensitive & reinstatement after 10 days should not have been the full 5mg dose. Would it be recommended that I try to go a bit lower (like 4mg) right now, or should I try to stabilize at 4.5mg? I do still have some symptoms, although they are less incapacitating (mild dizziness, blurred vision, nausea). Advice would be appreciated, since I don't want to stress out my nervous system any more than I have to! Thanks.

[Songbird]

On 7/6/2018 at 2:34 AM, jbird said:

I've been feeling a bit better overall, and was even able to do a 20min low impact workout 2 days ago, something that I wouldn't have dared to do a few weeks back! I did feel a bit nauseous afterwards, but only about 3/10. 

 

On 7/7/2018 at 2:58 AM, jbird said:

7/5/18 - blurred vision constant throughout the day, seems to be worse when looking left (?) but also appears to be improving a little -

12a fell asleep pretty quickly, despite some nausea 2/10

 

On 7/7/2018 at 6:15 AM, jbird said:

I do still have some symptoms, although they are less incapacitating (mild dizziness, blurred vision, nausea). 

 

It sounds like your symptoms have been improving, so I would hold at current dose for a while.  Please keep posting your journal here so we can see the patterns over time.

[jbird]

I think I spoke too soon, the past few days have been hell on earth I have hardly been able to get out of bed, thank god it's the weekend, I guess. My brain feels like it has a wet blanket over it, vision is terrible (blurry at 5+ ft), almost constantly nauseated, and I'm so so depressed and scared about it all. I feel so stupid for going back on these meds and terrified it's caused permanent damage. I've been reading this site a lot and can't find stories where blurry vision has improved. I'm also not sure if I have tachyphylaxis (last cycle it seemed less effective) so would holding at this dose even help me to stabilize?? I went back to 5mg last night because I'm desperately looking for some relief... this isn't a life worth living at the moment.

[Songbird]

Hi jbird.  Have things got worse since you started the liquid?  Some people notice a difference when switching to liquid.  Have you switched back to 5mg liquid or tablet?

 

It's also normal for things to be up and down for a while when your system is trying to stabilise.  We call it "windows and waves".  See: the windows and waves pattern of stabilization

 

Your system can only rebalance when things are kept consistent.  Dose changes, med switches, etc. cause confusion and instability.  See:  the rule of 3KIS - keep it simple keep it slow keep it stable

[jbird]

Thank you, songbird. I haven't started the liquid yet, just cutting my 10mg tablets in half. Maybe my pillcutter isn't very accurate? I'm really hoping these symptoms ease even a little bit soon.

[Gridley]

When you make the switch from tablet to liquid, you should do a gradual crossover to minimize effects on your system.

 

3/4 tablet, 1/4 liquid for 3 days

1/2 tablet, 1/2 liquid for 3 days

1/4 tablet, 3/4 liquid for 3 days

all liquid thereafter

 

Some people have a different reaction to liquid as opposed to tablet.

 

If you are going to continue with tablets, you really should get a scale, such as the Gemini-20 scale, to measure your decreases.  As Songbird said, it is very important to keep your doses consistent.

[jbird]

7/10

 

Stayed home from work .. couldn't sleep almost at all the night before. Spent most of the day in bed because I felt too sick to do much. Blurry vision bad all day.

 

8a woke, dizzy & heavy brain feeling 7/10 (all day)

10a back to sleep

11:30a woke up, had lunch

2p tried to meditate, anxiety spiked a lot

9p had some toast for dinner, followed by nausea at 6/10

11:30p took 5mg escitalopram

12:30a couldn't get to sleep, had to read until fell asleep ~1a

 

[jbird]

Today 7/11 my blurry/double vision is so bad I'm actually having a hard time seeing my laptop screen. I'm terrified.. why is it getting so bad?? It seemed like last week it was improving but the past few days have gone so quickly downhill. 

[Carmie]

11 hours ago, jbird said:

Today 7/11 my blurry/double vision is so bad I'm actually having a hard time seeing my laptop screen. I'm terrified.. why is it getting so bad?? It seemed like last week it was improving but the past few days have gone so quickly downhill. 

 

Hi Jbird, 

 

That certainly seems to be the way with withdrawals. Up, down, up down. Withdrawals aren’t linear, they’re all over the place and everyone reacts differently. I’m afraid the windows and waves pattern is something we have to go through to heal.

 

Here’s to taking each day as it comes, or even each moment when withdrawals are bad.

 

Take care💚

[jbird]

12 hours ago, Carmie said:

Here’s to taking each day as it comes, or even each moment when withdrawals are bad

 

Thank you for the sweet comment, it really helps to have support in dealing with this! I'm doing better today just with accepting that things may not be better today or even in a week, but eventually our brains will figure out the path to healing

[jbird]

7/11

 

7a woke

7:30a breakfast, took multivitamin, heavy head feeling 5/10

9-12 worked on a project at work, took a lot of breaks, didn't get as much done as I wanted but was partially successful

1p ate a snack, feeling pretty woozy from concentrating so long

2p took a dramamine, helped but made me very tired

3p felt pretty sick, had to lie down, being horizontal helps a lot

5p got back home, had another snack, laid down

7p dinner + TV, feelings nausea 3/10

11p took 5mg escitalopram, 2000mg fish oil

11:30 laid down for bed, probably fell asleep around 12:30

5:30 woke up with anxiety, took a benadryl and dozed til 7:30 today

 

The double vision is still pretty bad, I actually ordered an eye path off amazon so that I can have my hand free! I have been reading a bit about how SSRI can have anticholinergic effects (although Lexapro is supposed to have very low effect..?) and that drugs like that have been shown to cause vision problems. It helps to reassure myself that this isn't a permanent state, and is just the drug altering thinsgs in my brain. I'm working on having more acceptance of the way things are right now, and to adapt as much as I can to my new reality. It's just hard when symptoms get worse or appear out of nowhere, but I have faith that time will heal. I'm also increasing my dose of fish oil to see if that will help with my vision. Thank you to everyone for your advice & support!

[jbird]

Day 3 of severe double vision.. I am starting to think that my poor vision is actually causing a lot of my other symptoms such as dizziness and heavy head feeling. I wonder if I should taper a bit, as I saw a slight improvement a few days after I dropped to 4.5mg, but then had a bad day (didn't eat or sleep enough) and was scared back to 5mg. Maybe 5mg is too much for me now.. any opinions??

[Altostrata]

If the worse symptoms started within a few days of increasing back to 5mg, it could be that is too much for you.

 

Be sure to eat -- low blood sugar causes an increase in adrenalilne.

 

Are you also light-sensitive?

 

Have you ever taken escilatopram during the day? What effect did it have on you?

[Carmie]

On 7/12/2018 at 11:38 PM, jbird said:

 

Thank you for the sweet comment, it really helps to have support in dealing with this! I'm doing better today just with accepting that things may not be better today or even in a week, but eventually our brains will figure out the path to healing

 

Yes, it certainly is a day at a time Jbird, 

 

This really is the hardest thing we will ever do in our lives but one of these days we will all be success stories. I know it’s hard to believe that now but one day we really will all look back and we will have survived.

 

With me it’s going to take an extremely long time as I can only taper tiny doses and every now and again I have to have a break from tapering as I’m chronically ill as well n it all gets too much. 

 

Wishing u all the best on this hard journey in our lives💚

[jbird]

Well, I have some bad news.. I hope this won't be too anxiety-provoking for some here, but I think it's important to share in case my situation is similar to others. I admitted myself to the ER last night where I work because I felt so sick I worried something was seriously wrong (I'm a grad student in a big medical center). After talking to several drs they admitted me and I had an MRI very early this morning. Turns out I have lesions in my brain indicative of MS, which was actually one of my worst fears.

 

I did cry yesterday out of fear several times, but strangely when the neurologist gave me the results I just felt acceptance. He seemed very positive, saying that they have very effective treatments to help people with this condition live as normally as possible, and new drugs are coming out all the time. I was surprised to find I was relieved, I think not knowing is the most terrifying part.

 

I know I can do this-- I'm still me, and this is not going to hold me back from living my life!! I'm relatively young, 33, and want to have kids soon, which he assured me is totally an option. I really try to take care of myself, and I won't let myself be defined by this.

 

I know my feelings may be up and down from here, especially since they have me on a course of steroids to reduce inflammation. I have a great support system though, friends and family. One happy thing- my brother and I haven't spoken since last October because of a stupid fight, but yesterday he came to the hospital with a card and chocolates! 😊 My boyfriend is in Mexico and already sent flowers to my room too 💕 

 

Right now I'm going to try to get over this bump- they want me here til Wednesday. So excited to feel better, after these past few weeks of agony! I'm still planning on tapering off escitalopram after this settles so I will continue to post here for that. Big hugs to everyone here and i hope we can all get back to our best selves sooner than later!

[Gridley]

Great attitude, jbird.  At least you know, and everyone is rallying around you.

[Carmie]

I’m sorry to hear about your news Jbird, 

 

But as Gridley said, I too think you have an amazing attitude. Yes, you’re definitely still you. No matter what illnesses we have we are still ourselves. I’ve been sick with CFS for over twenty years but I have still kept me. I can’t do as much as other people and I need a lot of rest and have spent lots of time in bed but I’ve kept my quirky and creative personality and the wonder in everything around me. 

 

I love new experiences, exploring, doing creative things, organising get togethers and lunches, going to concerts, going out in nature etc etc. My illness hasn’t changed me, it’s just slowed me down a bit. I take each day as it comes, some days I can’t do much at all so I’ll watch Netflix and crochet, then when I have more strength I’ll have some adventures.

 

Here’s to continue being ourselves💚

[Songbird]

It's good that you were able to find out the cause of your illness, so you can get the right treatment.

[Carmie]

Hi jbird, 

 

Just wondering how you’re doing.💚

[jbird]

Hi Carmie, thanks for checking in ❤️ It's been 6 months since my MS dx, and honestly I have to admit I'm still struggling to fully accept that life is completely different. I'm in the midst of my 2nd relapse since diagnosis (optic neuritis), and high dose steroids are no joke, but hoping they help me get back to normal soon. I actually weaned myself off escitalopram by September with no ill effects, go figure! 🤷‍♀️ but now considering maybe restarting, since depression is a very common symptom with MS and I'm definitely feeling it. I think once I get on the right medication it will slow things down for me, still in the early stages yet. I'm lucky to have a wonderful neurologist - he's young but very enthusiastic about his job and seems to genuinely care about my wellbeing. This will probably be my last post, just because my main issue has changed and I don't want to worry others who may fear my diagnosis. I wish you all the best, and really appreciate that this wonderful community exists 💜

[ChessieCat]

6 hours ago, jbird said:

I actually weaned myself off escitalopram by September with no ill effects, go figure! 🤷‍♀️ but now considering maybe restarting, since depression is a very common symptom with MS and I'm definitely feeling it.

 

Please update your drug signature.  Account Settings – Create or Edit a signature

 

It may be from stopping the escitalopram in September.

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

Especially:

 

CT and Fast Tapers

 

It doesn’t end at “0”

 

When to end the taper and jump to zero?

 

Is it withdrawal or relapse?  Or something else?

How do I know it's withdrawal and not relapse?

 

6 hours ago, jbird said:

now considering maybe restarting

 

Going back on would be classed as reinstatement.  When reinstating SA recommends starting with a small dose and increasing a bit more if needed so that you don't end up taking too much, which might make things worse.  Please read Post #1 of this topic:  About reinstating and stabilizing to reduce withdrawal symptoms

[Carmie]

Hi Jbird, 

 

I know you said you might not be coming back to this site, but in case you do, I just wanted to reply to your message. 

 

I’m really sorry you have MS, it must have been a shock when you got the diagnosis six months ago.

 

I’m sure it would make you feel depressed, and you’re no doubt going through a grieving process and trying to come to terms with the diagnosis. As ChessieCat said though, the depression can also be from coming off the meds in September, that isn’t really a long time ago. Also steroids can affect withdrawals. A number of people on this site ended up having severe waves because of steroids. That can also be contributing towards your depression. 

 

If you decide to reinstate a bit of your medication please check out the link above on reinstatement. Do not go back to your original dose as it will be too high and you may end up with more problems. It’s best to start on low doses, you can always go up a bit higher slowly if you need to.

 

What was the last dose you were on before you jumped off? Could you please update your signature, and write the dates of your tapering and the amounts.Thanks a lot.

 

Sending hugs 🤗