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Dejavu

Dejavu: can anyone tell me what's going on?

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Hopefull
On 8/5/2020 at 12:50 PM, Dejavu said:

@Erell, I do that all the time. Write a nice long post and then accidentally delete it. No worries - I just appreciate hearing from you. I think of you each day and send you healing energy. I hope you can complete this crossover soon. You're on the right track.

 

@Hopefull, you experienced a setback just a few months ago? I'm sorry. How often has that occurred since you jumped? Is the severity lessening? Thanks for your encouragement. I'm feeling pretty down right now, and it's very appreciated.

It doesn't happen frequently. 

But even when you jump off,  it has been 18 months for me, you are bound to experience minor setbacks. 

The symptoms were mild, but still disheartening.

But the moderators assured me that it does happen, so I waited for the symptoms to settle. It is not a nice feeling. 

That is why don't feel down.  Keep pushing forward. 

Hold as long as you need to. No need to rush.

I personally think that the moment you no longer experience symptoms is the moment when you are finally healed.

I am not there yet, but I am getting closer or at least I hope so.

You will reach your goal, just have to be persistent and patient, which is really hard to do.

I am cheering you on. You can do it.

Take care, 

Hopefull.♥️🙏

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Dejavu

Feeling lost and hopeless at the moment. 5 weeks into this wave. Very little improvement in internal tremor, tearfulness and anxiety, and they are miserable symptoms. This is starting to feel disturbingly like my crash in 2018. My mood is very low at the moment. Will I stabilize again? I was doing so very well until I suddenly wasn't. No real warning signs. Will I ever be able to taper again, not knowing when a crash is lurking around each corner? And if I'm going to suffer like this all the way down, why would I even want to? I am heartbroken and triggered by the idea of being stuck on this drug for the rest of my life. My every gut instinct is that I need this drug out of my life. But this is the third time I've crashed (once with benzos, and now twice with zoloft). I just don't know if I can go through this again. I feel like a burden on everyone who has to deal with me, and I'm tired in my body, heart and soul. 

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ChessieCat
35 minutes ago, Dejavu said:

I'm tired in my body, heart and soul.

 

Some of this sounds like you are battle weary.  And I don't think the situation/s we have been in since the beginning of this year are helping.

 

I suggested to another member yesterday that even if they have to taper at a very tiny percentage reduction it is still reducing the drug, even though it may be very slowly.  And we have also noticed that some members seem to have difficulty getting past particular doses but one they are past that range of dosing they are able to resume a regular taper.  But, like many things regarding AD and WD, unfortunately there is no rule.

 

And whilst I'm here, I am very thankful that you made the suggestion to hold for longer.

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Dejavu

@ChessieCat

8 minutes ago, ChessieCat said:

Some of this sounds like you are battle weary.  And I don't think the situation/s we have been in since the beginning of this year are helping.

Nail on head. Times two. I hate to whine, but I am indeed very weary. The loss of 4 people close to me in as many years has been very hard, and withdrawal has kept me from processing these losses in a healthy way, I think. And now, this country is in shambles to boot. If our election goes the wrong way, we cannot even become expats, since no country in their right minds is accepting Americans at this point in the pandemic. I am seriously frightened. I feel so unhealthy at this point that if I did catch COVID, I fear I would not have a good outcome.

 

I'm ready to commit to a long taper if I can arrange a taper like yours or @RachelSusan or @composter - with tapering just going on in the background with only minor upsets now and again. I just want to be able to live my life without wondering when I'm going to run head first into a wall. But right now, I'd just be happy to get to the point where I CAN taper again. Chessie, you have helped me so much. I respect and trust your judgment because you tell it like it is. So I'm just going to ask the question I've been afraid to ask: given that I've stabilized before (after RI), am I likely to do so again? 

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ChessieCat
1 hour ago, Dejavu said:

So I'm just going to ask the question I've been afraid to ask: given that I've stabilized before (after RI), am I likely to do so again?

 

I think you know the answer to that.  And I can understand that you have been afraid to ask it.  I don't like giving the answer that I do, but unfortunately the answer is, nobody knows.  Even if they were to open up your brain and do tests on it, they may not be able to answer your question.

 

However, we do need to remember that our brain and body are remarkable things and it's amazing the work they do trying to fix up things that we do to them.

 

We have other members posting that they are experiencing unexpected/worse waves since the beginning of this year.

 

1 hour ago, Dejavu said:

The loss of 4 people close to me in as many years has been very hard, and withdrawal has kept me from processing these losses in a healthy way, I think. And now, this country is in shambles to boot. If our election goes the wrong way, we cannot even become expats, since no country in their right minds is accepting Americans at this point in the pandemic. I am seriously frightened. I feel so unhealthy at this point that if I did catch COVID, I fear I would not have a good outcome.

 

Even a "normal", meaning never medicated, person would be experiencing stress and related symptoms from these things.

 

When I was seeing a counsellor I decided to write down a timeline of the stressful events I had experienced in my life.  It made me realise that there was a very good reason that I felt unable to cope.

 

Have you considered counselling for the life stressors (not withdrawal of course, ha ha)?

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composter

I’m so sorry to see you going through this, and for five weeks! You’re absolutely right the added chaos of our country’s (leadership) mishandling of the pandemic as well as grieving the loss of loved ones, simply magnified the pain. 
 

If you’ve been tracking symptoms, is there any trend of improvement? 
 

And I’m sure you’ve wracked your brain about whether there were any precipitating factors such as: unintended dosage change, addition of some other medication, change in manufacturer, etc. It can’t hurt to double check. 
 

How long have you been on this current dose? I had been reading a few threads lately of cases where folks got worse the longer they were on a dose (some kind of poopout or paradoxical response) so they actually found it worked better to lower the dose to relieve the symptoms. I don’t know enough about these cases to say whether you might fit that profile but it’s worth a thought. I believe Brassmonkey was one of these cases if you want to ask him. 

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Dejavu

@composter, I've been parked on this dose for around 3 months now. I've seen overall slight improvement of dizziness and skewed vision, and have some brief relief of anxiety every now and then, though not often. 

 

I made a dosing error back in May, where I accidentally updosed for maybe a week. When I realized it, I dropped back down, and then did another 2.5% a week later. It never occurred to me to treat the accidental updose/return to regular dose like a dose change event. I should have held a while at that point. It never entered my mind. I also used a steroid nasal spray right before this wave hit. Manufacturer is the same as always. I checked.

 

I know there are no guarantees, but I was under the impression that most people do stabilize by holding in a wave. Is this your understanding as well? You've had bad waves that you've come back from, right? I'm quite triggered by the notion that I might not come out of this. Don't know what would be left for me at that point. Just looking for a little reassurance, I guess. I had a pretty awful day anxiety-wise today, and I'm terrified at the moment. 

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composter
8 minutes ago, Dejavu said:

I also used a steroid nasal spray right before this wave hit.


I wonder if this would have been a factor in setting off a wave. 

 

9 minutes ago, Dejavu said:

I was under the impression that most people do stabilize by holding in a wave. Is this your understanding as well? You've had bad waves that you've come back from, right? I'm quite triggered by the notion that I might not come out of this.


I’m going to go ahead and tag @brassmonkey to weigh in on this: Dejavu has been holding on her dose for 3 months and has had a wave for the past 5 weeks. Any chance she might improve by making a slight reduction? I had read about these cases that seem to poopout when a dose is held for a long time. You may have insight to share. 
 

To answer your question, in my case waves had lasted for 3 weeks maximum. And yes, have definitely come back to a stable place. I can understand why the thought of not coming out of a wave would be horrifying. It’s such a hard place to be. Are you sleeping okay? The lack of sleep was probably the hardest thing for me with waves. 

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sunnysideup69

@Dejavu, good morning.

 

I'm a trained psychotherapist and I'd like to echo Chessie's idea about therapy/counselling.

 

Back in March, pre my bro and sis dying, and at the beginning of the current world situation, I had a worsening of symptoms. Was super stressed by my bro's imminent death and anxiety was high.

As a therapist, I KNOW first hand how few therapists understand WD.....but the fact is, if you can get someone good, with whom you have a rapport, it doesn't matter. They can help you to tolerate the feelings you have, in the moment.Also, someone good will BELIEVE your report that you are in WD and not recommend you take further drugs, they will listen to you and work with you. They can also help you to tolerate the anxiety of 'not knowing' definite answers.

 

Reluctantly, I went back into therapy in March because I felt so crap, after feeling better at the beginning of the year. It has helped me to stabilise, of that I'm sure. Just having a space where I can go and literally dump all my frustration and worries is a huge relief. When you have a good rapport with someone who is really listening to you, it actually helps you to self regulate. I speak to her about WD and yes, she has no experience of it, but she listens and tries to work with me on how she might help. We also work on other issues, psychological ones that come up, because not EVERYTHING is WD. However, we do have an agreement that if, on an appointment day, I'm feeling really  WD symptomatic, then there will be no 'psychological digging' in that session, other than a quick enquiry into whether there has been a trigger for the symptoms....ie sometimes WD is just WD.

 

You might find it beneficial to work with someone who is more body based as a therapist.

 

Also, I know you used the nasal spray and had the misdosing accident, but could it be possible that the world situation has more to do with this wave occurring? Even people NOT in WD have been feeling instability. It's almost bound to hit us harder.

 

Sending you love and a big hug.

 

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Dejavu

@sunnysideup69

12 minutes ago, sunnysideup69 said:

could it be possible that the world situation has more to do with this wave occurring? 

It's certainly possible. The day before this wave hit, I learned I had been exposed to a friend who had a co-worker test positive for COVID. As I waited for my friend's test results, I became very fearful and panicked that I had it. The next day, I woke up in this wave. (My friend was negative, by the way, and I never had any symptoms). I think this wave was probably a conglomeration of things. But I'm so tired.

 

I know I need to resume therapy, but I'm not sure that in my present state of mind, I can do the work. I catch myself saying: if I'm not going to re-stabilize, then my life is going to be s**t anyway, so why bother? It's very hard not to feel like damaged goods when you're going through this. And I was doing so well before I started my taper! I was grieving, but I was well and living my life. Now, all that seems to be gone - maybe for good, and I am devastated. 

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sunnysideup69
2 minutes ago, Dejavu said:

@sunnysideup69

It's certainly possible. The day before this wave hit, I learned I had been exposed to a friend who had a co-worker test positive for COVID. As I waited for my friend's test results, I became very fearful and panicked that I had it. The next day, I woke up in this wave. (My friend was negative, by the way, and I never had any symptoms). I think this wave was probably a conglomeration of things. But I'm so tired.

 

I know I need to resume therapy, but I'm not sure that in my present state of mind, I can do the work. I catch myself saying: if I'm not going to re-stabilize, then my life is going to be s**t anyway, so why bother? It's very hard not to feel like damaged goods when you're going through this. And I was doing so well before I started my taper! I was grieving, but I was well and living my life. Now, all that seems to be gone - maybe for good, and I am devastated. 

 

The very fact that you stabilised before is hopeful. It's so annoying that we can't 100 per cent predict the course of WD, but the fact is, everything eventually changes.

 

Some therapy would be helpful for challenging the catastrophisisng thoughts. Sounds like some support with thinking and also bodily/physical feelings would be more useful, no digging at the moment. I think it's worth a try. I recognise those thoughts you are having, they feel very familiar. Good therapy can help you tolerate difficult feelings and also form a different relationship to your thoughts.

Really, you've got this. When I'm feeling disheartened about stability, I look at the people here who've tapered out of poopout, in fact. And are nevertheless pulling through eg brassmonkey.

 

 

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ChessieCat
43 minutes ago, Dejavu said:

I know I need to resume therapy, but I'm not sure that in my present state of mind, I can do the work.

 

In the interim you might find journalling helpful.  It doesn't have to be pretty or make any sense.

 

I did some research and wrote a post about it:

 

 

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Hanna72

Hi @Dejavu

I am so sorry to hear about your struggles.

I was wondering if you have tried to listen or read about practicing staying in the present moment. My favourite spiritual teachers are Eckhart Tolle and now I am listening to « I am that » by Nisargadatta Maharaj. I find great comfort in listening to these spiritual teachers and they help me to silence my mind and my so called story of my past and fear of the future. 
Our thoughts can be so powerful, and sometimes for me one negative thought can lead me to a down role spiral of misery. The good news is that with practice we can stop this thinking by being aware when these thoughts creep in and ignore them.We are not our thoughts. We can’t change what is happening in this world and by focusing on all the suffering it only makes us suffer more. 

3 hours ago, Dejavu said:

And I was doing so well before I started my taper! I was grieving, but I was well and living my life. Now, all that seems to be gone - maybe for good, and I am devastated. 

No it is NOT gone. That’s what your thoughts are telling you. Change that channel. 
There is a wonderful saying that I read sometimes:
“The darkest nights produce the brightest stars” ️ 

My thoughts are with you

Sending you a big hug💖

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