Losingheart: End Of The Line

[Losingheart]

My anxiety nightmare was triggered by a devastating miscarriage in my mid thirties. Then, after rounds of IVF, I finally became pregnant again. Throughout the pregnancy, my anxiety increased as I feared another pregnancy loss. By the time my precious baby was born, my anxiety had escalated. My focus was now about keeping him safe. We were warned in the hospital about whooping cough and I feared people visiting. My husband's 40 plus, extended family were waiting to do their duty and visit as soon as possible. Each one wanting to pick up and kiss my newborn. I was terrified.

 

After an exhausting 2 month struggle with breastfeeding, mastitis, sleep deprivation and intense anxiety, I crashed. I was diagnosed with post natal anxiety and later ocd, which was a huge shock. I had lived my life relatively carefree before my miscarriage but was now faced with an unrecognisable reality. I felt as if the old me had died and was gone forever. I mourned her. I still do. The stranger that took her place was a frightened shadow, plagued by harrowing anxiety and intense suffering.

 

I was immediately put on 10mg of Lexapro, which was horrendous, as it increased my anxiety ten fold. It eventually evened out though and I felt a little better. After 4 or 5 months I wanted to get off and was rushed off in 2 weeks. The brain zaps and were painful and awful.

 

Within 3 - 4 months I crashed again. This time I was worse than before and was put on 20mg of Lexapro.

 

I have continued this pattern over the last 8 years, trying desperately to get off Lexapro, only to crash again within months. I was told I would need SSRI's for the rest of my life.

 

I have had a frozen embryo waiting for me all this time, but have not wanted to proceed with a pregnancy while on an SSRI.

 

My heartbreak and devastation over these last years has caused me to almost give up hope. I am now at the end of the line and this is my final opportunity to be free of Lexapro and proceed with another pregnancy.

 

I am down to my last 200mcg and am terrified of what lies ahead. I am struggling with my ocd and anxiety, and am afraid I will crash again. I really don't know if this is who I am now or if I have tapered too quickly. I would have preferred to taper much slower, but age is not on my side.

 

I will need to take progesterone and oestrogen for the first few months of the pregnancy. 

 

Can anyone advise me of when to stop the 200mcg? Also any ideas if the progesterone and oestrogen will contribute to anxiety so soon after a taper?

 

My biggest fear is needing to go back on Lexapro during my pregnancy. I do not want this to happen.

 

Any advice would be much appreciated.

 

 

[Onmyway]

Welcome to SA @Losingheart, 

I am so sorry you have had such a hard time coming off of Lexapro and are now worried that you are going to be stuck on it. 

 

However, you are not powerless You have now tapered quite carefully and should expect to do well. However, I also looked at your tapering history and it is faster than we recommend. Given your history of previous trials and reinstatements, the chance of withdrawal symptoms is increased - there is a concept of kindling, if you want to look it up on this forum. How did the tapering go for you? Did you have severe symptoms? The crashes that you report after quitting Lexapro are delayed withdrawal symptoms. If I were you, at this point, I would wait a few months before trying to  get pregnant after getting to 0 to make sure that things are OK. During that time you can reinstate a tiny amount if need be. And I would maybe do a few more steps from 0.2mg - i.e. go to 0.1 mg, then 0.05mg etc. Escitalopram is a hard drug to get off of.  An embryo can stay frozen for decades so it's better that you are in good place before attempting to get pregnant again and avoid SSRIs during pregnancy - they are shown to increase risk of birth defects and autism and also the risk of miscarriage.  So I would advise a lot of caution at the end of the taper and a long hold after coming off of Lexapro. Why don't you give yourself a year before you attempt pregnancy and that way you are not rushed and you don't have to make these decisions all the time. 

 

In the meantime, it sounds that a lot of your issues emerged from a traumatic incident. Have you considered doing a trauma treatment such as EMDR? It has worked great for me in a couple of instances and other people on this forum have found it useful as well. I would do it after a couple of months of stability after stopping the drugs. It can make things a bit worse at first but can really help after that bump. I would also advise that you consider doing it with a good therapist.

 

Why taper by 10% of my dosage? - Tapering - Surviving Antidepressants

Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration - Tapering - Surviving Antidepressants

 

(Can you please put this in your signature? How to List Drug History in Signature - Introductions and updates - Surviving Antidepressants)

 

 

 

[Losingheart]

Thanks so much for your kind reply and information @Onmyway 

 

This taper has been a work in progress. I have found it more challenging reducing from 10mg and have felt more side effects, the lower I go. I have felt more 'drugged' over the last 6 months than ever before. It's a feeling of light headedness and grogginess. This usually comes with increased anxiety, racing heartbeat, irritability, sensitivity to loud noise and a general feeling of overwhelm. It is more evident a few days after a drop and can last for a week or 2, sometimes longer, before it settles. If I am particularly tired, I can feel my brain 'jolting' when I go to bed and close my eyes, or if I wake in the night. The jolting is not the sharp brain zaps I have experienced in the past, but more like a softer, less severe, jolt.

 

Another symptom I've had, is difficult to describe and I wonder if it is common? It feels like icy cold acid is being poured over my brain. I feel it at the front of my head. I've had this for a long, long time and it comes and goes. 

 

Along with all of these symptoms, I've had crippling ocd triggers and ocd related anxiety to deal with. I have reconnected with my ocd psychologist though, who is providing support, but I still struggle on a daily basis. It makes life difficult and my spirit is incredibly low most of the time. Is it possible the delayed withdrawal symptoms from previous crashes were ocd related and not from a quick taper?

 

Thank you for your supportive suggestions, perhaps I should delay the embryo transfer until I am more settled. I am getting older though and time is running out for me.

 

Feeling overwhelmed...

 

 

[Onmyway]

Hi @Losingheart, 

Thank you for completing your signature. It will help us advise you better. 

it does sound that you are struggling with withdrawal. What seems to be happening is that your body doesn't seem to get through the adaptations of one drop until you make another and it accumulates. That is the danger of too fast tapering. I am so sorry it's been so difficult. I think if you start tapering more slowly, esp at the lower end and hold for a while things will be a bit easier. Have you had a chance to read the article on why tapering at 10% of your previous dose is important especially at the lower doses? 

 

OCD symptoms are some of the most debilitating and while exposure therapy works for some issues it doesn't always work for all issues and it is excruciatingly difficult work. OCD symptoms are also known to be triggered by withdrawal in many people who have never had it before and they resolve on their own when withdrawal is completed. They also can be intensified by withdrawal if you had it before. 

 

Please do look up EMDR for the miscarriage trauma. It just might help resolve at least some of your OCD symptoms as that seems to have been the trigger. Something horrible happened to you, you probably felt helpless. It seems like your mind/body is now constantly looking for potential signs of danger that you can address before another such event happens esp if it relates to protecting your child/people you care about and feel responsible for. Does that sound right for you? I don't presume to know how you are feeling but I know OCD is about over-responsibility. 

 

I don't know your age but it is the eggs that are the limit to fertility in women and even women in their 60s have carried pregnancies successfully. A year's delay would not change things that much in terms of carrying the pregnancy but it can be all that is needed to set you up for success with it and keep you stable throughout and after.

 

I recommend that you make a decision about delaying by a certain amount of time - I'd suggest at least a year so you don't have to constantly wonder if you are making the right decision with it. That will help you decrease your remaining dosage over a few more months and leave you time to stabilize before attempting pregnancy. 

 

Your symptoms are telling you that your brain is struggling to adapt to the lowered doses - the brain jolts are a clear withdrawal sign and to me so is the intensification of the OCD. Please give yourself a break and compassion. Your body is asking you to be gentle with it. 

 

The graph in the thread below shows how potent these drugs are at the very low doses. The majority of their effect comes at the low doses. 

Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration - Tapering - Surviving Antidepressants

 

This may be hard to hear if you are a striver but withdrawal really teaches you patience and acceptance. Please also look up some of the non-drug techniques to help you get through the emotional symptoms Non-drug techniques to cope with emotional symptoms - Symptoms and self-care - Surviving Antidepressants. Many members find Claire Weekes' work very helpful. 

 

Have you considered taking magnesium and Omega 3s to help with your taper? There are long threads on them on the forums. Lots of people find magnesium calming!

 

Hope you get some respite soon Losingheart. You have done well with a slow-ish taper until now but even that seems to be fast for your body which is struggling to catch up with adaptations. If you slow down a bit more you will set yourself up for success in getting off of these drugs for your pregnancy and hopefully stay off of them beyond. 

 

Sending you good thoughts, 

OMW

[Losingheart]

@Onmyway Thank you for your response, it was so helpful and I have read the links. It's beyond disheartening to read how hard it really is, to get off these drugs.

 

I think you could be right, regarding me being on high alert for danger. It is so exhausting. My contamination ocd worries are getting worse by the day. I wake up in a panic at everything I have to face.

 

And sadly, I have had a difficult week. The person I am married to, has little tolerance or patience for my anxiety. He thinks it's a weakness. He doesn't see how fragile I am and expects me to be 100%. He is wearing me down and I'm so sad. He does things regardless of if they trigger me. I know I need to face my fears, but it is difficult when you're not ready. There is little support from him. 

 

I am trying to hold it together for my little boy who needs me. 

 

I miss the person I was before the ocd diagnosis, but she is long gone. I think this is it for me and that SSRIs are the only way I can exist to subdue it.

 

I long for peace.

[Onmyway]

2 hours ago, Losingheart said:

@Onmyway Thank you for your response, it was so helpful and I have read the links. It's beyond disheartening to read how hard it really is, to get off these drugs.

 

I think you could be right, regarding me being on high alert for danger. It is so exhausting. My contamination ocd worries are getting worse by the day. I wake up in a panic at everything I have to face.

 

And sadly, I have had a difficult week. The person I am married to, has little tolerance or patience for my anxiety. He thinks it's a weakness. He doesn't see how fragile I am and expects me to be 100%. He is wearing me down and I'm so sad. He does things regardless of if they trigger me. I know I need to face my fears, but it is difficult when you're not ready. There is little support from him. 

 

I am trying to hold it together for my little boy who needs me. 

 

I miss the person I was before the ocd diagnosis, but she is long gone. I think this is it for me and that SSRIs are the only way I can exist to subdue it.

 

I long for peace.

Hi @Losingheart

I will try to answer briefly as I'm away this weekend and don't have my laptop so sorry for the typos but wanted to say how sorry I am to hear you have been struggling. No wonder you feel so distraught. It seems like the OCD symptoms are really acting up and you are feeling unsupported by your husband. Sorry to hear you feel alone in this.

 

Having said that, what your husband is doing may actually help you not get worse in the long term. One of the worst things loved ones can do is enable OCD fears. It's bad in two ways - 1) it helps the sufferer believe that their fears are legitimate rather than exaggerated 2) it doesn't actually help because then you'd find something  else to worry about, it's only a temporary relief that will escalate things worse over time.

 

OCD is about whatifs and the need to be 100% certain that something that seems under your control is not going to hurt you or the ones you love (usual fear). But 100% certainty is impossible and control is an illusion so you then go into deeper and deeper needs to be reassured. Does that spiral sound familiar?

 

Nobody is going to judge you here if you do decide to go back on ADs. However, once you've been in withdrawal it is likely that they are not going to work as they did before and could make things much worse. It's a real possibility. Our systems are sensitized and reinstatements, esp high doses, can go wrong. They might work ok to relieve the withdrawal symptoms too but we don't know. If you do decide to do with ADs please update slowly and see if things get worse before you continue. So this updose by a 0.5 mg then 1 mg and see if this makes things better. If not, you can go back to previous dose.

 

I suspect that if you stopped tapering and let your nervous system settle for a few months, you will see significant enough relief that you can get help through a therapist. There are specialist therapists that deal with OCD using CBT and can be quite successful. I personally think you should also look into trauma related therapy - EMDR or other as I really think that would help. I saw relief from EMDR almost instantaneously and your issues are directly related to a traumatic event. Won't solve everything but might get you stable enough to cope with life. Can you access therapy (time, availability, money)?

 

There are a few members here who have dealt with OCD and are managing symptoms. I had the contamination version in a very severe form as a teen (I got poisoning from breathing in too much bleach while cleaning!) and the OCD symptoms resolved in a few months without drugs but a good talk with someone close that I think served as a sort of therapy and helped resolve some trauma.

 

This is not a sentence to a lifetime of suffering and neither is withdrawal. Both are going to be challenging to get through and will require a lot of patience but you have it in you to get through them. I have absolutely no doubt in that! You suffered something horrible (the miscarriage) and your amazing brain resolved to protect you from it ever repeating; it is just overdoing it a bit. The AD assault, while well meant, did not help with the subsequent withdrawals and you just need a bit of respite.

 

Please take a deep breath, thank your brain for helping you to survive and protecting you the best way it knows how and remember that while this feels horrendous, you and your loved ones are actually safe from the outside and from you. It's your mind that's seeing monsters where there are only hand puppets.

 

I hope you get some respite soon and please give yourself some compassion for all the hard work you are doing surviving and getting through this.

 

Big hugs 

OMW

[Anya324]

On 9/9/2021 at 12:53 PM, Onmyway said:

In the meantime, it sounds that a lot of your issues emerged from a traumatic incident. Have you considered doing a trauma treatment such as EMDR? It has worked great for me in a couple of instances and other people on this forum have found it useful as well. I would do it after a couple of months of stability after stopping the drugs. It can make things a bit worse at first but can really help after that bump. I would also advise that you consider doing it with a good therapist.

This is such a good suggestion!! Wait a year, get stable and get help! Imagine who you could be this time next year? 💖💖💖

[Losingheart]

Thank you @Onmyway for responding so quickly, it really helped 😊

[Losingheart]

Thank you @Anya324

[Losingheart]

Can anyone help?

 

I have been off Lexapro 100mcg for 6 weeks and am suffering. I have experienced back to back ocd triggers and have been crying a lot. After 8 years of being unable to cry due to Lexapro, this was at first cathartic, but is now making me feel so low. My triggers are causing severe anxiety and I am in a constant state of high alert. My heart is always racing due to anxiety and I am struggling to settle. I am in desperate need of respite, but my ocd won't allow it. My husband is also adding to my anxiety as he has little tolerance of it and is an impatient person. He thinks I'm weak because of my anxiety. This has added greatly to my sadness, as I need kindness and positive encouragement to help me face what I need to face. 

 

I am waking in the early hours around 5am with panic and wishing I didn't have to wake at all. My days are spent managing my anxiety and dreading life. Anxiety looms over me and I feel little hope in general. I have a therapist who is there when I need her which is comforting. Also, my Mum and sister are incredibly supportive.

 

At this point, I am wondering if this is withdrawal or if I need to reinstate a tiny amount of Lexapro? Unfortunately liquid Lexapro is only available in 20mg per 1ml here. I painstakingly measured the smallest amount when tapering, in a 1ml syringe (400mcg) and diluted it in water and re measured from there. It was difficult to measure accurately each day but I tried my best.

 

I am so sad and long for a calm environment and peace. 

 

 

 

 

[ChessieCat]

Q:  Was your last dose 0.1mg?

 

Please change the doses in your drug signature so that they are consistent.  That is, in mg, not mcg.  This will reduce the risk of errors in calculation and discussion of your doses.  Thank you.  Please note that I am using mg throughout my post, not mcg.

 

Lexapro is a very strong drug compared to most other antidepressants, so even though 0.1mg does not sound like much.  However when you compare it to Zoloft/sertraline and Effexor/venlafaxine you can see that there is a lot of difference. 

 

escitalopram  18.0mg      1mg             0.1mg

sertraline        98.5mg     5.5mg         0.55mg

venlafaxine    149.4mg    8.3mg         0.83mg

25 minutes ago, Losingheart said:

At this point, I am wondering if this is withdrawal or if I need to reinstate a tiny amount of Lexapro? Unfortunately liquid Lexapro is only available in 20mg per 1ml here. I painstakingly measured the smallest amount when tapering, in a 1ml syringe (400mcg) and diluted it in water and re measured from there. It was difficult to measure accurately each day but I tried my best.

 

 

If the symptoms appeared after the last reduction AND there was no other possible cause, then it is possibly withdrawal symptoms.  Have you been drinking alcohol, been sick, taking an antibiotic or stopped/started any other drug or supplement, been under extra stress, lost a close relative/friend/pet, financial stress, job change/loss, moving, travelling, etc.

 

If there is nothing that you think might have contributed to the worsening of the withdrawal symptoms then only known way to reduce the withdrawal symptoms would be to reinstate a very tiny amount.  Because you have already been off the drug for 2 months, I think it would be better to reinstate 0.025mg which is 1/4 of the last dose you took.  To do this you can dilute with more water.  I understand that this might be difficult for you, however, as part of getting off our drug we sometimes need to do things that are difficult.  All we can do is the best we can with what we have.

[Losingheart]

Hi @ChessieCat yes last dose was 0.1mg.

 

Symptoms have been snowballing for a while now and I attribute that to ocd and family stress. Although, they have worsened since stopping 6 weeks ago.

 

I have reinstated 0.020mg to see if I settle somewhat. If so, is there a recommended holding time before tapering again? 

 

Hopefully I won't have to increase the dosage.

 

Many thanks.

 

 

[Losingheart]

Is anyone going through the same thing?

 

 

My ocd triggers are taking over and I am drowning. I feel I'm heading towards another failed attempt at tapering and am scared I'll fall over again.

 

My last relapse was horrendous. I couldn't eat and barely functioned. I was almost catatonic. My Mum had to take care of me. It took many months to settle and feel that tiny spark of hope again. 

 

I have no idea if each relapse has been SSRI related due to fast tapers, or if I'm doomed to be on them forever, because this is how I am now??? I was diagnosed with ocd at 38. I lived a happy life before that. I feel as though I died at that point and have been a ghost, living in hell ever since.

 

I am terrified and have reinstated a tiny amount of Lexapro, 0.020g after 6 weeks of being off.

 

My nervous system feels sensitised and I jump at every sound. I am on high alert.

 

I don't know how to live in this world anymore with ocd. I am suffering and just want to close my eyes forever.

[ChessieCat]

On 12/5/2021 at 12:27 PM, Losingheart said:

I have reinstated 0.020mg to see if I settle somewhat. If so, is there a recommended holding time before tapering again? 

 

Thank you for updating your drug signature.

 

At this time it would be better not to be concerning yourself about when you will be tapering.

 

The aim is to bring your withdrawal symptoms to a bearable level.

 

Q:  Has there been any improvement in any of your symptoms?

 

It takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.

 

It's important to try and stay as calm as possible during the reinstatement process otherwise it is difficult to know if your symptoms are from the reinstatement or from stress and anxiety.

 

 

[Lorenzo]

Hi @Losingheart

 

Around end of July this year I experienced a Pure OCD that horrified me. I had it for a while before that but it got really bad in July. Everything was a trigger and everything I thought somehow found a way to show my damnation. All hopefull words or consolation (which made me feel even more empty) would always flip around and turn against me showing my hopelessness. Everything that could be hopefull or good was closing its doors on me and I was afraid to talk incase something in the conversation would trigger my fear. I was afraid to even think of anything positive because it would turn negative. I was unconsolable, I could not feel anything and was mentally terrified as I thought I lost my soul. I cried a few times but no chest/gut relieve. My chest was locked and sinking - desiring emotional release but to no avail. I tried to find a meaning to every little symptom i had or things that happened to me. I felt guilty about everything I did or said. If for example I felt guilty or fearful i had sinned for making a joke and then some other day I made the same joke and didnt feel guilty i would get scared i didnt feel guilty or scared. My mind would always find a way to relate everything I did, think or hear back to the thing i fear. I read and asked questiones to find answers and when Id read or hear something very similar to what is happening to me, my mind would always find a way to tell me its not exactly my case and that no one is as doomed as i am. I felt like the worst human being on earth. 

 

I was only taking Zyprexa (antiphsychotic/neuroleptic) and was 3 months off valium which i tappered too quickly or not using the 10% reduction of the present dose.  Im currently taking valium, zyprexa and escitalopram( can be seen on my signature)

 

I still have many of the symptoms mentioned above. At the moment I am feeling better than i was a few months back when i decided to take escitalopram which helped me with ocd although i have fear grippied to my bones everyday still (bad in the morning and gets better at night). Cold shower helps me calm down. I still get triggers everyday and try to focus my mind on other things, trying not to fall into the spiral. I awake in the morning as if ive been in battle and the day brings a new battle. I try to accept that before i go to bed.

 

If you have any questions or something isnt clear to you please dont hesitate to ask me.  Your post

has helped me. Take it easy and i try to avoid rushing anything and keeping my life as simple as possible. 

[Losingheart]

Hi @ChessieCat I have felt dreadful over the last week since reinstating. Racing heart, panic, shortness of breath, brain thuds when falling asleep and memory lapses. 

 

I have had incredible stress, in regards to some important life changing decisions I need to make. There unfortunately has been no calm in my life at all. 

[ChessieCat]

On 12/7/2021 at 9:04 PM, ChessieCat said:

Q:  Has there been any improvement in any of your symptoms?

 

Please answer the above question.

[Losingheart]

@Lorenzo Thank you for your msg. I feel your pain and am sorry you have suffered with  ocd too. 

[Losingheart]

1 hour ago, ChessieCat said:

 

Please answer the above question.

I don't feel there has. @ChessieCat

[ChessieCat]

Because of the additional stressors in your life at this time it is very difficult to know if the reinstatement is helping or not.

 

What you are experiencing could be from the stress, which can cause symptoms similar to what you have described, or from the reinstatement.  This page has a labelled diagram with what can happen in the body when it is stressed:

 

https://www.getselfhelp.co.uk/anxiety-self-help/

 

Only you can decide whether you stop the reinstatement.  I am not able to make that decision for you.

 

Please read Post #1 of this topic:

 

About reinstating and stabilizing to reduce withdrawal symptoms

[Losingheart]

@ChessieCat Thank you for your time.

[Losingheart]

Does anyone have any practical advice regarding ocd and tapering? It feels impossible to navigate, with many symptoms that could be withdrawal, relapse or both.

 

I am struggling and feel incredibly low.

[Lorenzo]

Hi @Losingheart

 

I dont know much regarding ocd but i heard that ERP (Exposure with Response Prevention) therapy is the gold standard for dealing with OCD. If you want a link to a video I saw explaing this type of therapy, please dont hesitate to ask. 

[Lorenzo]

Hi @Losingheart

 

I dont know much regarding how to treat* ocd but i heard that ERP (Exposure with Response Prevention) therapy is the gold standard for dealing with OCD. If you want a link to a video I saw explaing this type of therapy, please dont hesitate to ask. 

[ChessieCat]

9 hours ago, Losingheart said:

Does anyone have any practical advice regarding ocd and tapering? It feels impossible to navigate, with many symptoms that could be withdrawal, relapse or both.

 

I am struggling and feel incredibly low.

 

You might be able to find other members who suffer from OCD and read their Introduction topics.

 

SA's topic:

 

obsessive-compulsive-disorder-or-ocd-repetitive-intrusive-thoughts-compulsive-behaviors

 

9 hours ago, Losingheart said:

with many symptoms that could be withdrawal, relapse or both.

 

Is it withdrawal or relapse?  Or something else?

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