robcbar1: Suffering after 20 years of SSRI

[robcbar1]

On 2/15/2018 at 9:45 PM, robcbar1 said:

You’re too good to me Alto.  Thank you!!

I feel like I’m getting much worse each day I take the Lamictal.  Extreme agitation and scattered intrusive/dark thoughts, like I’m going to lose control.  I really want off of it but scared to reduce based on my experience last week.  Please help!

[ChessieCat]

On 16/02/2018 at 1:44 PM, Altostrata said:

Correct, split the dose. We'll see what it does as you gradually move the second dose later in the day. You must keep good notes.

 

If we find you're getting adverse effects from lamotrigine, we will figure out a way to reduce it while minimizing rebound.

 

Q:  Have you been keeping notes?

 

Providing these can sometimes help the mods to work out what is going on and what might be a course of action to take.

 

Just saying that you are getting worse isn't helpful.  We need you to be more specific about when you take your dose and when the symptoms worsen.

 

 

[DaveB]

On 2/15/2018 at 7:40 PM, robcbar1 said:

Thank you for replying!!!

 

Dr. Shipko basically told me to stick with the coping strategies on SA.  Since I can’t take benzos, his only other thought was Lamictal.  I may work with him via phone to help explain protracted withdrawal to my loved ones who are fed up with me.  “Tough love” definitely isn’t appropriate and it’s making me feel worse about the situation and myself.  

 

I agree with your assessment on the Lamictal.  So I’m clear, I’m not reducing the daily dose, just splitting it, correct?  My fear with splitting into two doses is that it could create a more steady state of symptoms vs. the brief windows I’ve been getting at night.  I wish there was an easy way to go back to 2.5mg daily without the horrible rebound that I felt last week when I tried it.  The power of this drug scares me.  How in God’s name can people take 400mg of this stuff???

Why not? Seems like I read something written by Dr. Shipko where he states that is sometimes the only thing that helps some of his patients. Why did you change from Paxil to Zoloft to Lexapro? I am sorry you are suffering so badly. Have you ever tried to reinstate a super small dose, say 1 mg of Lexapro or 5-10 mgs of Zoloft and just hold for a while? That is what it seems JameF did, and it has brought him back from the worst. I am not trying to advocate taking meds, just wondering if maybe you have more options than to just deal with this. The Paxil I take certainlymade things worse when I started, but seems to finally be starting to stabilize now that I have just kept it steady for a long time. 

[robcbar1]

14 hours ago, DaveB said:

Why not? Seems like I read something written by Dr. Shipko where he states that is sometimes the only thing that helps some of his patients. Why did you change from Paxil to Zoloft to Lexapro? I am sorry you are suffering so badly. Have you ever tried to reinstate a super small dose, say 1 mg of Lexapro or 5-10 mgs of Zoloft and just hold for a while? That is what it seems JameF did, and it has brought him back from the worst. I am not trying to advocate taking meds, just wondering if maybe you have more options than to just deal with this. The Paxil I take certainlymade things worse when I started, but seems to finally be starting to stabilize now that I have just kept it steady for a long time. 

I changed from Paxil to Zoloft to Lexapro many years ago as the newer meds hit the market, I was told that they were "cleaner" than the previous.  I tried to reinstate Zoloft last year and it was disastrous.  I have not tried to reinstate Lexapro since I stopped taking it 2 years ago.  No one I've talked to thinks that's a good idea.  Even though I am suffering so badly right now, I don't want to undo any progress by playing around with meds.  I think the current Lamictal trial is making me worse.  I can barely hold it together and it's giving me suicidal thoughts (which is totally new for me).  I almost went to hospital the past two days but I'm fighting it because I don't want to be drugged any further.     

[JamesF]

22 hours ago, robcbar1 said:

I changed from Paxil to Zoloft to Lexapro many years ago as the newer meds hit the market, I was told that they were "cleaner" than the previous.  I tried to reinstate Zoloft last year and it was disastrous.  I have not tried to reinstate Lexapro since I stopped taking it 2 years ago.  No one I've talked to thinks that's a good idea.  Even though I am suffering so badly right now, I don't want to undo any progress by playing around with meds.  I think the current Lamictal trial is making me worse.  I can barely hold it together and it's giving me suicidal thoughts (which is totally new for me).  I almost went to hospital the past two days but I'm fighting it because I don't want to be drugged any further.     

 

Hi Rob. Just to get a bit more clarity on your situation. 

 

My intent is not to persuade you to go any particular direction, but instead to see if there are any other options

 

You say here in one of your first posts:

 

"After that, I tried Effexor (only lasted 4 days), Zoloft again (only lasted 2 weeks), and Cymbalta (only lasted 1 day).  Each med made my symptoms much much worse and I was essentially bedridden during each trial.  I haven’t taken anything since except for the occasional benzo which is effective at calming me down and helping me sleep but they scare me (addictive, more withdrawals, etc.)."

 

Can you be specific about the dose level that you tried reinstatement at for each?

 

It sounds like it may have been doctor supervised, and therefore high dosages?

 

I certainly worsened during initial reinstatement, as did many others, even at small doses. It took about a month to even out after introducing 5mg Zoloft. I almost stopped due to fear and intense symptoms.

 

I fully empathise with your situation and suffering, but am wondering if you're limiting your own options based on fairly abrupt conclusion and limited data of a few weeks. For instance, maybe it was;

 

1) too high of a reinstatement dosage (which might be too much for a sensitised CNS to adapt to, or might certainly prolong stabilisation) 

 

2) too little time to stabilize. 2 weeks and intervals of days are too small of a time interval in the context of very long term, 20 year usage and very long term 2 year ~ withdrawal. 

 

 

I also think another factor in your case having switched through many medications and such a long time off, reinstatement stabilisation would take longer than usual because your CNS has taken a few "hits" and consequently has less resiliency. But probably the "right" one is whatever you were taking the longest.

 

 

Maybe it's possible that a much lower dose than you tried may have worked?

 

And maybe it's possible that a much lower dose may have stabilised you over months rather than days or weeks ?

 

 

I also understand the emotional investment and psychological commitment to staying off... as well as how powerful the fear is not to add anything new that could worsen a fragile situation. When I reinstated, I felt utter dread, like I was playing russian roulette. ( in hindsight I think this was more a product of my state than rationality)

 

You say 'i don't want to undo progress"... Which is a powerful sentiment. It seems rational but can also strongly limit the options you feel you have and may even keep you suffering

 

 

But ...please do post more details to help us understand your exact situation. 

 

Quoting something I wrote earlier below since it relates to this sentiment of not wanting to undo progress;

[JamesF]

6 hours ago, JamesF said:

 

I feel a lot of suffering members rule out reinstatement for many reasons. For example; 

 

- Interpreting short term worsening of symptoms as a sign of an "adverse" or "paradoxical" reaction, when it's natural to have onset symptoms. Then abruptly ruling out the idea that it might stabilise or improve.

 

- Starting reinstatement too high, having a bad experience, then ruling it out as a whole when low dose may have been an option

 

- Not reinstating for fear of what may happen, partially due to the many bad accounts here and the general hypersensitivity to all substances during withdrawal

 

- Emotional investment in all the time spent suffering and sacrificing during withdrawal. I think this is an incredibly powerful reason many don't reinstate. It was my major reason. If reinstating, the suffering may seem to have been for nothing. I really struggled letting go of this. But 1) time spent suffering should never justify continuing to do so 2) when choosing to discontinue, we don't have complete knowledge of what may happen over the following months/years, so shouldn't blame ourselves and can only know the wisdom of our choices  in hindsight 3) reinstating to a low dose is still progress 4) The experience gives valuable wisdom for the next attempt

 

- A simple and irrational dislike of being on the medication. Even though life on it can be happier, more functional, and so on, there's a significant power to get off it. Why? For what? There are some rational reasons. But usually the short or long term fears or health risks are greatly exceeded by suffering and chronic stress in withdrawal. For instance, I imagined I would recover a greater depth of emotion/feeling after withdrawing. It was the opposite, withdrawal itself was so traumatic that it shut down my ability to feel anything positive - something that had been relatively intact while on the drugs. I think it's really easy to idealise some fictitious self that will emerge off the medication, but how much evidence do we have for it, really? Or are we simply using it as a device to rationalise our suffering?

 

- A multitude of other reasons, including the downsides of online communities. E.g. the community social pressure of the forum to encourage you to wait it out and not go back on. Like a band of withdrawers at sea in a ship, keep rowing, we're all in this together, we'll make it... even though everyone has a different psychiatric history, a different set of symptoms and a different timeline of healing (some may even have some  degree of irreversible damage that simply will not heal with time e.g those who started young. So these pressures can sometimes encourage us to ignore the best choices to reduce our own suffering

 

Jay

 

 

[robcbar1]

2 hours ago, JamesF said:

 

Hi Rob. Just to get a bit more clarity on your situation. 

 

My intent is not to persuade you to go any particular direction, but instead to see if there are any other options

 

You say here in one of your first posts:

 

"After that, I tried Effexor (only lasted 4 days), Zoloft again (only lasted 2 weeks), and Cymbalta (only lasted 1 day).  Each med made my symptoms much much worse and I was essentially bedridden during each trial.  I haven’t taken anything since except for the occasional benzo which is effective at calming me down and helping me sleep but they scare me (addictive, more withdrawals, etc.)."

 

Can you be specific about the dose level that you tried reinstatement at for each?  These were all the lowest possible dose (sub therapeutic) with the plan to titrate up once toleration was established.     

 

It sounds like it may have been doctor supervised, and therefore high dosages?  Effexor was 37.5 mg, Zoloft 25 mg, and Cymbalta 20 mg

 

I certainly worsened during initial reinstatement, as did many others, even at small doses. It took about a month to even out after introducing 5mg Zoloft. I almost stopped due to fear and intense symptoms.

 

I fully empathise with your situation and suffering, but am wondering if you're limiting your own options based on fairly abrupt conclusion and limited data of a few weeks. For instance, maybe it was;

 

1) too high of a reinstatement dosage (which might be too much for a sensitised CNS to adapt to, or might certainly prolong stabilisation)  I think this may be what happened.   

 

2) too little time to stabilize. 2 weeks and intervals of days are too small of a time interval in the context of very long term, 20 year usage and very long term 2 year ~ withdrawal. 

 

 

I also think another factor in your case having switched through many medications and such a long time off, reinstatement stabilisation would take longer than usual because your CNS has taken a few "hits" and consequently has less resiliency. But probably the "right" one is whatever you were taking the longest.

My CNS is completely shot.  I am very concerned that trying anything right now could be catastrophic.  One thing I haven't tried in 2 years is reinstating s small dose of Lexapro, maybe at 1 mg.  But as stated above, I was suffering withdrawal when I was on a full dose of Lexapro (10 mg) before I rapidly tapered under the care of a psychiatrist.  We then moved on to 25mg of Zoloft for about 5 months but couldn't stem the bleeding.     

 

 

2 hours ago, JamesF said:

 

Maybe it's possible that a much lower dose than you tried may have worked?

 

And maybe it's possible that a much lower dose may have stabilised you over months rather than days or weeks ?

 

 

I also understand the emotional investment and psychological commitment to staying off... as well as how powerful the fear is not to add anything new that could worsen a fragile situation. When I reinstated, I felt utter dread, like I was playing russian roulette. ( in hindsight I think this was more a product of my state than rationality)

 

You say 'i don't want to undo progress"... Which is a powerful sentiment. It seems rational but can also strongly limit the options you feel you have and may even keep you suffering

 

 

But ...please do post more details to help us understand your exact situation. 

 

Quoting something I wrote earlier below since it relates to this sentiment of not wanting to undo progress;

Hi James - Thanks for responding.  I am in really rough shape right now so I'm only able to reply in short sentences.  Please see above.   

[robcbar1]

2 hours ago, JamesF said:

 

I'm not against reinstating, but At 2 yrs. off the drug that I was on long term (Lexapro), doesn't it go against everything written on the topic?  Alto's notes on reinstatement are pretty clear that the duration since stopping decreases the likelihood of it working.  Dr. Shipko also shares a similar opinion.  I wonder if anyone on SA has been off an SSRI for 2 yrs., suffered protracted withdrawal, and then reinstated successfully?

 

My body and CNS are so weak right now that if reinstatement went bad, it would probably kill me.   

 

I'm not sure how much longer I can tolerate this state of akathisia, severe agitation, depression, and anxiety.  My wife may need to take me to the hospital because I can barley sit still or put my thoughts together.  It seems to get a little better at night but the mornings and days are pure torture.  I'm surprised I'm still alive after last week.    

 

I am at a loss for what I should do.  The hospital terrifies me but I don't see any other option.     

[JamesF]

Hi Rob, sorry you are suffering. I have felt very much the same way. At my worst I was sent to hospital in an ambulance several times by concerned docs, have out of hours docs emergency visit me at home and so on. The state of overwhelm does feel truly unbearable sometimes. 

 

 

I do hope you can find some small relief in some non drug techniques like tapping and meditation in the mean time. Have you had any luck with it?

 

 

Overall it sounds like you had a lot of changes in quick succession and that it stopped you stabilising on any particular SSRI.

 

These changes also made the picture of what happened unclear.

 

 

I agree that you should be cautious. But also think it would be a mistake to draw conclusions about your options from this unclear situation.

 

 

For instance, perhaps lexapro withdrawal was heavily affecting you while trying Zoloft, and this prevented stabilisation, since different SSRIs are not substitutes and have a different pharmacology. 

 

 

 

"Effexor was 37.5 mg, Zoloft 25 mg, and Cymbalta 20 mg"

 

These dosage levels are high in terms of effect size within the brain.

 

Low dose or sub-therapeutic in terms of psychiatrist prescriptions is high in terms of effect.

 

Here's the graph for Zoloft for example. Effect Vs dose: 

 

 

The effect of 25mg is around 90% of what you can get with the highest possible doses.

 

Even 5mg is having around 35% effect. 

 

Tiny reinstatement doses have big effects.

 

I couldn't find the equivalent for lexapro, but the point is that "starting" or sub-therapeutic doses are definitely overpowered for reinstatement purposes. Youre looking at 10% even this. 

 

It sounds like low dose + very long hold may be an option for you to consider in future. 

 

But I would guess that whatever you do, you would want to do with the supervision of a good psychiatrist like Shipko. Since you being comfortable in your choices seems important to you on all levels right now

 

 

I'm not against reinstating, but At 2 yrs. off the drug that I was on long term (Lexapro), doesn't it go against everything written on the topic?  Alto's notes on reinstatement are pretty clear that the duration since stopping decreases the likelihood of it working.  Dr. Shipko also shares a similar opinion.  I wonder if anyone on SA has been off an SSRI for 2 yrs., suffered protracted withdrawal, and then reinstated successfully

 

I think there's much more at play here. A generality does not mean it holds true in your individual case. Plenty of people do fine. Ive read studies showing subsequent SSRI usages being slightly less effective, but not much at all.

 

I suspect Altos rule of thumb may partly be an artifact of stabilisation taking a proportionate amount of time to the time you were off the meds.

 

 

I also think it's natural for online communities (be they for SSRI withdrawal, insomnia, or any health issue) to be biased towards worst case scenarios.

 

The sufferer is afraid of making things worse. Other Participants feed that fear with their own nightmarish accounts (that they will try to help you avoid out of kindness and concern concern), rules of thumb (that may not apply to you) and so on. 

 

All this feeds into an anxiety ridden state, and there seems to be no way out of the prison of symptoms, no options. Every choice could lead to a paradoxical irreversible worsening reaction. And the feeling of having no options is surely worse.

 

 

But this is a thin slice of the internet with a thin slice of perspectives. Many many people have positive outcomes.

 

 

 

Anyway.. I didn't mean to type a lot when you're not in a good state to read it. I hope this weeks wave improves for you soon. Hang in there! I truly thought I was on the verge of dying from exhaustion for months and months, but somehow, miraculously the body just keeps on going. We can weather more than we can possibly imagine... And we can recover from it too.

 

 

Also hope you can put yourself under the care of a Doc who fully understands your situation and can make sensitive, intelligent choices about what to do. I don't like to hear you're at a loss of what to do or where to go to relieve your suffering. Hoping you can gain some relief soon.

 

 

Jay

[samanthaelizabeth]

I hope you find something to stabilize on- And then go from there.  No point in suffering, in my opinion....

 

Sam

[robcbar1]

16 hours ago, samanthaelizabeth said:

I hope you find something to stabilize on- And then go from there.  No point in suffering, in my opinion....

 

Sam

Agreed and thanks.  I honestly cannot think of anything worse than this experience right now. Unless I’m misunderstanding Alto, Dr. Shipko, Dr. Healy, and various other resources, reinstating after being off for 2 yrs. has a highly improbable chance of stabilizing me.  The previous posts suggest otherwise.  I’m so confused.  Is there a mod who can help clarify possible next steps?

[AliG]

Hi Rob. It seems that you have had a lot of cooks in the kitchen and I'm not really surprised that you are ...  somewhat confused.

 

 

On 2/18/2018 at 10:22 AM, ChessieCat said:

 

Q:  Have you been keeping notes?

 

Providing these can sometimes help the mods to work out what is going on and what might be a course of action to take.

 

Just saying that you are getting worse isn't helpful.  We need you to be more specific about when you take your dose and when the symptoms worsen.

 

 

 

Let's start again. Can you provide more specific notes about your symptoms ... can you keep a journal or diary , as this will certainly help us to decipher your symtoms.

[robcbar1]

28 minutes ago, AliG said:

Hi Rob. It seems that you have had a lot of cooks in the kitchen and I'm not really surprised that you are ...  somewhat confused.

 

 

 

Let's start again. Can you provide more specific notes about your symptoms ... can you keep a journal or diary , as this will certainly help us to decipher your symtoms.

Thanks Ali – I provided notes earlier in this thread which follow a fairly consistent pattern.  In other words, my days haven’t differed too much so my notes for each day are almost identical.  Not sure if this is a good thing or a bad thing from a WD standpoint.  Here they are again in slightly more detail. 

 

6 am – Wake up after 3-4 hrs. of broken sleep, usually shaking with anxiety

Tinnitus mainly in my right ear is strongest when I first wake up, waxes and wanes throughout the day

7 am – Take 5mg chewable Lamictal (New: I started weening off of this, now on 4.5 mg liquid)

8 am – New as of 2/12 – Dark depression, suicidal ideation upon waking combined with agitation.  This symptom set is totally new and really scares me.  Not sure if it’s related to the Lamictal.  It generally gets better at night. 

9 am – Try to eat breakfast (sometimes I need to make myself eat)

Derealization builds in morning, worse at mid-day and early evening

10 am – Usually get my first panic attack (Thoughts like “Am I going to lose my mind?” “Is this ever going to end?” “How can I live like this?” etc.) 

12-1 pm – Try to eat lunch

Agitation/akathisia usually kicks in about this time and continues on an off throughout the day 

5 pm  – Usually get another panic attack around this time as the kids are home from school and there’s a lot of stimulation in the house

6 pm – Try to eat Dinner (sometimes I need to make myself eat)

9 pm – 1 tsp Natural Calm magnesium drink

Tinnitus, derealization, and agitation seem a little better around this time 

10 pm – 1.25mg melatonin for sleep

11 pm – Usually fall asleep but wake up almost exactly one hour later, toss/turn until I fall asleep again for another hour or two. 

 

***All day every day:  Derealization, anxiety, shaking, brain fog, confusion, dizziness, sensitivity to sound/light/motion, and pure fear over non-existent threats***    

 

I don’t know where my head is at right now.  I just need a break from this suffering but it doesn’t seem like I have any options.  I’m sure that thought loop is feeding into the depression.  If reinstatement was an option, I would have explored it months ago.        

 

[AliG]

Rob, I understand, as I was in much the same boat ~ "earlier in this thread" is not necessarily helpful now, which is why I have asked you to recap ~

 

A couple of questions :

 

On 2/18/2018 at 10:22 AM, ChessieCat said:

 

Q:  Have you been keeping notes?

 

Providing these can sometimes help the mods to work out what is going on and what might be a course of action to take.

 

Just saying that you are getting worse isn't helpful.  We need you to be more specific about when you take your dose and when the symptoms worsen.

 

 

 

On 2/18/2018 at 10:22 AM, ChessieCat said:

  On 2/16/2018 at 12:44 PM, Altostrata said:

Correct, split the dose. We'll see what it does as you gradually move the second dose later in the day. You must keep good notes.

 

If we find you're getting adverse effects from lamotrigine, we will figure out a way to reduce it while minimizing rebound.

 

What do you mean by panic attack? It's different for everyone.

 

You may want to lower your melatonin ~ it's probably too high.  .25 mg  is a good place to start. Less is often more ~

[samanthaelizabeth]

On 2/15/2018 at 4:55 PM, robcbar1 said:

Were my answers above not adequate?  I actually spoke to Dr. Shipko today.  He is a good man and speaks highly of you.      

How did you manage to speak to Dr. Shipko? 

[samanthaelizabeth]

I just spoke to Dr. Shipko and he advised me not to taper off of my Zoloft and to add Wellbutrin. That will make 3 drugs that I will be on.  I just want to be happy again, I hate these doctors! If someone would have told me that this stuff would "poop out" and I would still have to go through withdrawals to taper off I never would have started.  I am between a rock and a hard place!  I don't know what to do anymore.

[robcbar1]

15 minutes ago, samanthaelizabeth said:

I just spoke to Dr. Shipko and he advised me not to taper off of my Zoloft and to add Wellbutrin. That will make 3 drugs that I will be on.  I just want to be happy again, I hate these doctors! If someone would have told me that this stuff would "poop out" and I would still have to go through withdrawals to taper off I never would have started.  I am between a rock and a hard place!  I don't know what to do anymore.

I am very surprised he told you that.  Are you sure it was the right Dr Shipko?  

[samanthaelizabeth]

Just now, robcbar1 said:

I am very surprised he told you that.  Are you sure it was the right Dr Shipko?  

The one I spoke with is in Pasadena, CA

[robcbar1]

12 minutes ago, samanthaelizabeth said:

The one I spoke with is in Pasadena, CA

 

12 minutes ago, samanthaelizabeth said:

The one I spoke with is in Pasadena, CA

That sounds completely counter to the conversation we had, but then again I’m not sure how you framed your story.  He was very sensitive to protracted withdrawal, acknowledged the pitfalls of antidepressants, and answered all of my questions.  I was shocked at how generous he was with his time and insight.  I’m sorry your experience was not the same.  I would caution folks on SA on contacting him without intending to become a patient.  He’s very busy and doing a lot of good work re: informed consent.  

[ChessieCat]

3 minutes ago, robcbar1 said:

I would caution folks on SA on contacting him without intending to become a patient.  He’s very busy and doing a lot of good work re: informed consent.  

 

Exactly!

 

4 minutes ago, robcbar1 said:

That sounds completely counter to the conversation we had, but then again I’m not sure how you framed your story.

 

Exactly!

[samanthaelizabeth]

6 minutes ago, ChessieCat said:

 

Exactly!

 

 

Exactly!

Sorry- I just figure if someone else reached out to him that I could as well.  Won't happen again.

[robcbar1]

3 minutes ago, samanthaelizabeth said:

Sorry- I just figure if someone else reached out to him that I could as well.  Won't happen again.

Sorry, that’s not what I meant.   You have every right to contact whoever you’d like, but Dr Shipko is probably not an appropriate resource unless you’re his patient.  I’m not familiar with your story so I can judge his advice.  But whatever you do, please for the love of God, follow the tapering guidelines on SA.   I took an SSRI for 20 years, and was weaned off (by a psychiatrist) in two weeks.  I’m basically the poster boy for uninformed and dangerous psychiatry. I will never get the past two years (and counting) back and pray every day that I heal.  Only a choice few on here can truly relate to the utter hell of protracted withdrawal.  

[samanthaelizabeth]

Yes, I will.  I'm not sure what i'm doing.  I'm pissed about these doctors now.  I just want to be happy again, if that means adding something else to the zoloft or tapering, i'm not sure.  I just want myself back.

[robcbar1]

I went to the hospital yesterday because I was desperate and didn’t feel safe (severe agitation, irritability, restlessness).  The prospect of visiting the hospital is very hard for me because I am wholeheartedly against being drugged, and that’s the only thing the they would do.  But then again, it’s “safer” than being home with irrational thoughts.  How do others handle desperate moments?  I feel trapped. 

 

I am convinced that the 5mg Lamictal trial that I have been writing about the past few weeks has gone paradoxical and making me suicidal.  I started weaning down (10%) to 4.5mg this week and all of the symptoms mentioned above are more intense.  I’m also noticing that every time I drop, I get acidic rushes in my head throughout the day.  Is that glutamate rebound?  It feels like I’m either losing my mind or having a stroke. 

 

Can someone please help me create a taper schedule so I don’t end up in the hospital again?

[powerback]

51 minutes ago, robcbar1 said:

I went to the hospital yesterday because I was desperate and didn’t feel safe (severe agitation, irritability, restlessness).  The prospect of visiting the hospital is very hard for me because I am wholeheartedly against being drugged, and that’s the only thing the they would do.  But then again, it’s “safer” than being home with irrational thoughts.  How do others handle desperate moments?  I feel trapped. 

 

I am convinced that the 5mg Lamictal trial that I have been writing about the past few weeks has gone paradoxical and making me suicidal.  I started weaning down (10%) to 4.5mg this week and all of the symptoms mentioned above are more intense.  I’m also noticing that every time I drop, I get acidic rushes in my head throughout the day.  Is that glutamate rebound?  It feels like I’m either losing my mind or having a stroke. 

 

Can someone please help me create a taper schedule so I don’t end up in the hospital again?

Yikes rob ,sorry for you being in such distress .

It could simply come down to practice ,when it happens again take deep breathes and shift your focus to anything but your mind ,I know this is hard and sounds impossible but if your adamant about not wanting to go to hospital again you should try it ,a bit like extreme CBT .

 

If we keep going to the hospital some day our free will could be taken from us and that is my worst nightmare ,I got out for a short walk earlier and I felt alien ,I used mindfulness to push all the nasty thoughts out of my head .practice is a big key .

 

Here's an example at the store after my walk  ,I was only getting bananas but  I was behind a lady with full shopping ,my inner critic said look the other line is better ,I froze and didn't move ,I over rode it and said hey relax I'm in no rush ,my mind was racing so bad I started to blush and think other customers were judging me .I know going to the hospital is a serious case but we need to respect how powerful our minds are .

Another day I would go in there and say hello do you mind if I go ahead of you ,I was just happy to get out for fresh air .[no self service I was in lidil].. ,

 

.practice and make note of another time you would of went to  hospital but then float through it at home and it will build resilience

 

I don't say any of this lightly ,I have been in awful states and got passed it with needing loads of rest afterwards .

 

Of course judge each time on its own merits and if hospital is the best place and safest then so be it .

 

Ive been getting these death chills I call them lately ,a strong wave of panic like a demon  going through me ,I ignore them because ive got past worse ,but its all practice and being stubborn helps .

 

Take care .

[JamesF]

28 minutes ago, robcbar1 said:

I went to the hospital yesterday because I was desperate and didn’t feel safe (severe agitation, irritability, restlessness).  The prospect of visiting the hospital is very hard for me because I am wholeheartedly against being drugged, and that’s the only thing the they would do.  But then again, it’s “safer” than being home with irrational thoughts.  How do others handle desperate moments?  I feel trapped. 

 

I am convinced that the 5mg Lamictal trial that I have been writing about the past few weeks has gone paradoxical and making me suicidal.  I started weaning down (10%) to 4.5mg this week and all of the symptoms mentioned above are more intense.  I’m also noticing that every time I drop, I get acidic rushes in my head throughout the day.  Is that glutamate rebound?  It feels like I’m either losing my mind or having a stroke. 

 

Can someone please help me create a taper schedule so I don’t end up in the hospital again?

Hi Rob, 

If you don't feel safe and/or are having thoughts of harming yourself, it really sounds best and safest to be under the care of a psychologist/psychiatrist? 

I think you need some form of support like this,  and someone to speak with when you're in this state - rather than hospital docs who likely not to fully understand your case and may treat it like simple anxiety. 

Regarding tapering, stability is almost certainly your friend right now. Tolerating further withdrawal in the context of destabilisation would likely be very difficult - and sounds risky given your symptoms. A fixed schedule is certainly a bad idea. If no-one can persuade you not to taper, you should do so gradually that symptoms do not intensify.  

 

 

Are all symptoms more intense after weaning down? What about the "paradoxical" ones and thoughts of self harm? If so, definitely keep it stable. 

 

 

[EthanC]

Hey Rob, I believe it might be the withdrawals from Lexapro that's causing us to feel like this.

A study came out literally today (Feb 22nd, 2018) about how antidepressants do in fact work (as biased as it might be).

 

I find it sad and funny that they don't mention the long-term effects of these medications, especially when people stop taking them.

 

I am ~10 months into my CT stop from Cipralex/Lexapro and things are really not looking well.

 

I'm isolating myself, feeling disabled, etc because I'm depressed; and I'm depressed because of these variables.

 

Literally feeling clinically depressed to the core, and I'm almost certain it was taking Cipralex for ~9 years that caused it.

 

At the same crossroads as you, on whether or not I should reinstate a small dose (maybe 5mg) of it.

 

 

Maybe one day, we'll have answers or justice for all this suffering we're going through...

But for now, there is nothing we can rely on except on our gut whether we should reinstate or not.

 

 

 

 

[robcbar1]

17 hours ago, EthanC said:

Hey Rob, I believe it might be the withdrawals from Lexapro that's causing us to feel like this.

A study came out literally today (Feb 22nd, 2018) about how antidepressants do in fact work (as biased as it might be).

 

I find it sad and funny that they don't mention the long-term effects of these medications, especially when people stop taking them.

 

I am ~10 months into my CT stop from Cipralex/Lexapro and things are really not looking well.

 

I'm isolating myself, feeling disabled, etc because I'm depressed; and I'm depressed because of these variables.

 

Literally feeling clinically depressed to the core, and I'm almost certain it was taking Cipralex for ~9 years that caused it.

 

At the same crossroads as you, on whether or not I should reinstate a small dose (maybe 5mg) of it.

 

 

Maybe one day, we'll have answers or justice for all this suffering we're going through...

But for now, there is nothing we can rely on except on our gut whether we should reinstate or not.

 

 

 

 

Hi Ethan - I am 100% certain that it's withdrawal from being on Lexapro for 15 yrs and stopping over 2 weeks.  I am right with you symptom-wise, and going on 2 yrs. with very few windows.  From all that I've read, I don't think reinstatement is an option after the acute withdrawal phase.  A few people in this thread have had some stabilization through reinstatement so it's left me very confused.  Please keep fighting and take good care of yourself.  We will get through this.     

[robcbar1]

19 hours ago, JamesF said:

Hi Rob, 

If you don't feel safe and/or are having thoughts of harming yourself, it really sounds best and safest to be under the care of a psychologist/psychiatrist? 

I think you need some form of support like this,  and someone to speak with when you're in this state - rather than hospital docs who likely not to fully understand your case and may treat it like simple anxiety. 

Regarding tapering, stability is almost certainly your friend right now. Tolerating further withdrawal in the context of destabilisation would likely be very difficult - and sounds risky given your symptoms. A fixed schedule is certainly a bad idea. If no-one can persuade you not to taper, you should do so gradually that symptoms do not intensify.  

 

 

Are all symptoms more intense after weaning down? What about the "paradoxical" ones and thoughts of self harm? If so, definitely keep it stable. 

 

 

I've been under the care of renowned psychopharmacologist since the start of the year as well as therapy three times a week for the past 2.5 years.  So far, the two drugs we have tried Remeron and Lamictal have been a disaster.  I am looking for a conservative taper schedule to get off Lamictal so it doesn't sink me further in the abyss.  I missed a dose of Lamictal 2 weeks ago and since then I've been experiencing bi-polar type dark moods, dark thoughts, extreme agitation, and irritability.  I want off this med asap but I know I can't just stop it.        

[robcbar1]

19 hours ago, powerback said:

Yikes rob ,sorry for you being in such distress .

It could simply come down to practice ,when it happens again take deep breathes and shift your focus to anything but your mind ,I know this is hard and sounds impossible but if your adamant about not wanting to go to hospital again you should try it ,a bit like extreme CBT .

 

If we keep going to the hospital some day our free will could be taken from us and that is my worst nightmare ,I got out for a short walk earlier and I felt alien ,I used mindfulness to push all the nasty thoughts out of my head .practice is a big key .

 

Here's an example at the store after my walk  ,I was only getting bananas but  I was behind a lady with full shopping ,my inner critic said look the other line is better ,I froze and didn't move ,I over rode it and said hey relax I'm in no rush ,my mind was racing so bad I started to blush and think other customers were judging me .I know going to the hospital is a serious case but we need to respect how powerful our minds are .

Another day I would go in there and say hello do you mind if I go ahead of you ,I was just happy to get out for fresh air .[no self service I was in lidil].. ,

 

.practice and make note of another time you would of went to  hospital but then float through it at home and it will build resilience

 

I don't say any of this lightly ,I have been in awful states and got passed it with needing loads of rest afterwards .

 

Of course judge each time on its own merits and if hospital is the best place and safest then so be it .

 

Ive been getting these death chills I call them lately ,a strong wave of panic like a demon  going through me ,I ignore them because ive got past worse ,but its all practice and being stubborn helps .

 

Take care .

Powerback - Thank you.  This note is incredibly insightful and helping me.  I need to try to float through this difficult time because the hospital will most likely kill me (and I'm not kidding).  

 

If I can rant a bit...Rhode Island's primary mental health hospital (yes, there's pretty much only one) has great outpatient programs but the ER/assessment process is a joke and very dangerous.  They employ young inexperienced social workers and nurse practitioners (rarely a tenured doctor) to judge your condition and decide next steps.  I'm sure inpatient care is better but the "front of the house" is amateur hour and I feel bad for anyone who goes there expecting real help.  I showed up there crawling out my skin with akathisia and left with a sheet of paper enrolling me in a CBT program.  WTF.        

[powerback]

22 minutes ago, robcbar1 said:

Powerback - Thank you.  This note is incredibly insightful and helping me.  I need to try to float through this difficult time because the hospital will most likely kill me (and I'm not kidding).  

 

If I can rant a bit...Rhode Island's primary mental health hospital (yes, there's pretty much only one) has great outpatient programs but the ER/assessment process is a joke and very dangerous.  They employ young inexperienced social workers and nurse practitioners (rarely a tenured doctor) to judge your condition and decide next steps.  I'm sure inpatient care is better but the "front of the house" is amateur hour and I feel bad for anyone who goes there expecting real help.  I showed up there crawling out my skin with akathisia and left with a sheet of paper enrolling me in a CBT program.  WTF.        

 rant away of course ,Yep it truly is bonkers rob ,it shows the serious mess of it all ,we are basically collateral damage its a disgusting industry .the monkeys are really in charge of the zoo .

Take care Rob ,be safe .

[robcbar1]

On 2/15/2018 at 9:44 PM, Altostrata said:

Correct, split the dose. We'll see what it does as you gradually move the second dose later in the day. You must keep good notes.

 

If we find you're getting adverse effects from lamotrigine, we will figure out a way to reduce it while minimizing rebound.

Hi Alto - The adverse effects from the Lamictal are getting worse. I have never been this deeply depressed or suicidal in my life (even in protracted WD) and I’ve felt this way since lowering my dose too quickly two weeks ago.  I’m currently at 4 mg and barely stable.  I had no idea this drug was so powerfully awful and I desperately want to get off of it.  Can you provide any insight on how best to taper aside from 10% every 4 weeks?  Thanks.

[robcbar1]

On ‎02‎/‎15‎/‎2018 at 8:12 PM, Altostrata said:

I speak highly of Dr. Shipko. Did he have recommendations for your treatment?

 

Sorry, I missed your notes in http://survivingantidepressants.org/topic/16285-robcbar1-suffering-after-20-years-of-ssri/?do=findComment&comment=333907

 

It looks to me like the lamotrigine might be causing the derealization, etc. This indicates 5mg might be too much for you in the morning.

 

If it was aggravating the tinnitus, tinnitus would be worse after you take it, not earlier. It looks like your symptoms are reduced when the lamotrigine is partly worn off.

 

Therefore, I deduce a lower dosage of lamotrigine might serve you better. I might take 2.5mg at 7 a.m., move the other 2.5mg a couple of hours later progressively over several days until you're taking it at night.

 

Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important.

 

Based on my notes, I'm convinced that Lamictal is making me more unstable and exacerbating my WD symptoms.  I want off of it now.  I actually called local detox centers and hospitals to see if they'd admit me to get off because I don't feel safe reducing at home.  No luck.  I'm down from 5mg to 3.8mg and it's been extremely painful getting here.  Every time I step down even .2mg, I am hit hard with agitation, anxiety, and suicidal thoughts.  Can someone please help me safely get off of this drug?     

[AliG]

Hey Rob ~  a detox centre is possibly, not where you want to go as : what are they going to do ? 

 

Can you please keep notes over the next few days ~ with your Lamictal dose ( which you have tapered) as well as updating your signature.

 

We are here to help :

48 minutes ago, robcbar1 said:

On 2/16/2018 at 11:12 AM, Altostrata said:

 

Based on my notes, I'm convinced that Lamictal is making me more unstable and exacerbating my WD symptoms.

 

Notes will help us identify the problem.

[robcbar1]

3 hours ago, AliG said:

Hey Rob ~  a detox centre is possibly, not where you want to go as : what are they going to do ? 

 

Can you please keep notes over the next few days ~ with your Lamictal dose ( which you have tapered) as well as updating your signature.

 

We are here to help :

 

Notes will help us identify the problem.

I guess my thought is that a detox center could monitor me while I stop Lamictal (for seizures, agitation, suicidal behavior, etc.).  I know that's a naïve belief because they'd introduce more drugs if any of those things happened.  My current notes and symptom patterns haven't changed form the last time I posted my notes.  I will update my signature if that helps.      

 

6 am – Wake up after 3-4 hrs. of broken sleep, usually shaking with anxiety

Tinnitus mainly in my right ear is strongest when I first wake up, waxes and wanes throughout the day

7 am – Take 3.8mg liquid Lamictal (decreased from 4.0mg to 3.8mg on 3/1/18)

8 am – Dark depression, suicidal ideation with agitation.  Generally gets better at night. 

9 am – Try to eat breakfast (sometimes I need to make myself eat)

Derealization builds in morning, worse at mid-day and early evening

10 am – Usually get my first panic attack (Thoughts like “Am I going to lose my mind?” “Is this ever going to end?” “How can I live like this?” etc.) 

12-1 pm – Try to eat lunch

Agitation/akathisia usually kicks in about this time and continues on an off throughout the day 

5 pm  – Usually get another panic attack around this time as the kids are home from school and there’s a lot of stimulation in the house

6 pm – Try to eat Dinner (sometimes I need to make myself eat)

9 pm – 1 tsp Natural Calm magnesium drink

Tinnitus, derealization, and agitation seem a little better around this time 

10 pm – 1.25mg melatonin for sleep

11 pm – Usually fall asleep but wake up almost exactly one hour later, toss/turn until I fall asleep again for another hour or two. 

 

***All day every day:  Derealization, anxiety, shaking, brain fog, confusion, dizziness, sensitivity to sound/light/motion, and pure fear over non-existent threats***    

[William]

Hi Rob.

Even 1.25mg of melatonin is a high dose. i take anywhere from 0.125mg to 0.25mg and its still very effective.

What  dosage are you melatonin tablets? 5mg? If youre able, try to buy 1mg, you can cut them up easier with a pill cuter

All the best

Will