Cigale: reinstating help

[Dejavu]

@Cigale, I will give you the benefit of my experience, for what it's worth. I'm reviewing my notes from that time so that I can offer you some reassurance. Everyone is different, of course, but stabilization for me took 10 months, and I really didn't do the windows/waves thing much along the way, which was highly discouraging and made me wonder if I was even healing at all (I was). I also monkeyed around with my reinstatement dose no less than 4 times, which I'm sure set me back. Once I settled down and stayed on one dose, I experienced stabilization as more like a gradual decrease in symptoms as I went along, making me more and more functional (first being able to drive again, then 2 hours of work, then 4, then socializing for an evening, then a full work day, all the way up to playing 4 hour gigs with my band). 

 

It looks like I did start seeing rapid improvement at about the 7 month mark. It looks like appetite was the first thing that improved, followed, weirdly, by a complete and sudden dropout of anxiety. (I actually remember that day. One second it was there - the next it was gone. I waited for it to come back, but it didn't.) Looks like the next thing that improved was my sleep. At 8 months, I was regularly getting 6-7 hours a night, and sometimes 8, with the occasional lousy night thrown in (but even people not in ADWD have bad nights occasionally). The last things to go were dizziness and visual disturbances, but the dizziness was never severe to begin with, so no biggie. At the 10 month mark, it was all gone and I was solidly stable - I'd say 95 - 99%. But by then, "feeling good" felt so good I held for another 2 months just because I wanted to. I knew I was ready to taper when I realized I wasn't thinking constantly about WD anymore. It was no longer defining me. That was a good day. The best, in fact.

 

That day will come for you too. There is no doubt. And when it does, please don't do what I did. I was emboldened by feeling so good, and started a very robust taper, trying different methods and amounts to see what worked for me. While that in and of itself is not a bad idea, if I had it to do again, I would go very slowly for the first several months - 5% or less on a Brassmonkey Slide, until your system is heartier, and then think about experimentation. I think this all-over-the-place tapering schedule helped shove me into the wave I'm currently experiencing. I'm sure steroid nasal spray, an accidental updose, and all the COVID/political stress in the US all played a part as well. But the moral of the story is: even when you feel stable, remember that your system is still more fragile than you think. Treat it accordingly. I know that once I stabilize and resume my taper, I will be very mindful of the stress that my system has just endured, and go super super slow for a while. As time passes, that might change. All I know is that I sure as hell don't want to come back here again. 

 

You're doing the hardest part of the work right now by just waiting it out. It can, does, and will get better. Just hang in a while longer, ok? I'm rooting for you!

Edited August 27, 2020 by Dejavu
Typo

[Cigale]

Oh my @Dejavu! I am incredibly grateful for this detailed and thoughtful post from you. I imagine it wasn’t easy to rehash all of this. But what a gift of hope! I am so thankful as I really, really needed this.

 

I know we are all different and our journeys are unique, but just to hear that you didn’t really have windows/waves. I also haven’t really had much in the way of waves/windows, just the ever-present burning thrum of anxiety with some depression thrown in when I think I am stuck like this. I envy those people who have had real waves since they have experienced healing. I just wish I could get a break, a day feeling okay, some sign that I am doing the right thing by holding. And it is frustrating to see my symptoms increase over the last two months. If I could just take a peaceful nap, that would be glorious. 

 

Can you tell me what sort of things you did to help yourself through those first difficult months? Any meditation or therapy or self-help techniques? 

 

I have been trying all sorts of things, but I don’t know that I am helping myself. The one thing I do believe is helping is meditation - though there are times when even that makes me feel wore. I started therapy - CBT and ACT - but that has been pretty rough actually. My therapist feels like I am doing this to myself, my thoughts are causing all my anxiety, and that I keep coming back to WD as a crutch. And in the end, I do start to believe her and think I am just messed up and making myself suffer. Then my amazing husband reminds me that I was never, ever like this, torn up by anxiety, constantly asking if I am going to be okay, if I will ever be normal again. 

 

And thank you for all your guidance on tapering. Though you are in a wave now, I believe that you have always done all you could to help yourself, to care for yourself. From Amy Johnson: “It’s you doing the best you can in the moment to feel better, driven by love for yourself and a deep desire for wellness.” WHEN I stabilize, I am committed to going very slowly, definitely Brassmonkey style, and maybe starting with 5% total the first few months. 

 

16 hours ago, Dejavu said:

I'm rooting for you!

 

I can’t tell you how much I appreciate your support. This is such a lonely, scary journey, and it is so comforting to know there’s someone there to reach and tell you it is going to be okay.

 

I am rooting for you also. You will surface from this wave even stronger than before. I am so grateful for you! 🤗 

[Dejavu]

Oh my goodness! We are such similar creatures in so many ways.

3 hours ago, Cigale said:

just the ever-present burning thrum of anxiety with some depression thrown in when I think I am stuck like this. 

I had that every day before I stabilized. I have it every day now. I told my husband that, even though intellectually I know it's not rational and that it's crazy-making for him, my brain needs constant reassurance, which I asked him to provide anytime I need to ask for it. I try not to wear him out, but he understands that we are going through this together and so he hugs me and says, "you're going to be all right, honey" about 10x a day. He knows that's not the real me. And he's even more supportive this time, because he's seen me "come back" before, and he hates seeing me in misery.

3 hours ago, Cigale said:

envy those people who have had real waves since they have experienced healing. I just wish I could get a break, a day feeling okay,

 

I guess the way I see it is this: no real windows is tough, but no real waves either is a blessing. True, I will wake up in appreciably the same condition in which I went to bed the night before (since improvements are imperceptible in real time). But that's both good news and bad. At least I can be (reasonably) certain I won't be suddenly slingshotted into hell by a nasty wave. There's comfort in that.

 

3 hours ago, Cigale said:

some sign that I am doing the right thing by holding.

Oh, you are. No doubt about that.

3 hours ago, Cigale said:

If I could just take a peaceful nap, that would be glorious. 

I wish I had noted that day I was able to nap again. I seem to remember that being a turning point in recovery. I do recall it was some months into it. It was a good day. It will be for you, too. 

3 hours ago, Cigale said:

The one thing I do believe is helping is meditation - though there are times when even that makes me feel wore. 

I had to stop for that very reason. I was grieving both my mom and my sister at the time, and meditation took me to places that were just too dark and sad. At the risk of jinxing myself, however, I will say that when sleep is an issue, I use sleep meditation videos. My favorites are the ones by Lauren Ostrowski - her voice is so soothing. My husband likes them too, so I don't have to wear ear buds to bed. Sometimes I use them if I wake up too early, and I'm able to go right back down. I don't think I've ever heard the end of any of them!

3 hours ago, Cigale said:

My therapist feels like I am doing this to myself, my thoughts are causing all my anxiety, and that I keep coming back to WD as a crutch. And in the end, I do start to believe her and think I am just messed up and making myself suffer. 

Oh, hell no! Wrong therapist! Wrong, wrong, wrong! You do not deserve that, and it's not good for you! My therapist believes in ADWD, believes me, and supports my desire to manage my anxiety in a drug-free fashion. I've only been working with her for 3 weeks, but we are developing a good rapport. When deciding with whom I wanted to work, I specifically vetted each therapist on this issue. I found several who were at least somewhat ADWD savvy and/or anti AD. I could not work with someone on such intimate issues if that person did not believe me. I would urge you in all sincerity to find another therapist if you can. One who doesn't make you feel bad about yourself. That's the exact opposite of what's supposed to be happening in the therapeutic paradigm! 

3 hours ago, Cigale said:

I believe that you have always done all you could to help yourself, to care for yourself.

Not always. I have screwed up pretty royally. In fact, I am now paying the price for just such a screw-up. Don't be like me. Once I stabilized, I felt bulletproof. I treated my CNS like it had not just been through a war. I failed to respect the fact that, even though I felt fine, there was still some sensitivity there. I resumed my grueling pace of work, helicopter parenting/grandparenting, hosting family functions, settling my mother's estate, socializing, and playing live music without building in any extra down time for myself. My mindset was, "Okay, whew, that's over. Now back to business as usual." And while that could have been a good thing, in retrospect I should have taken more time to regenerate and heal - from ADWD and from grief. I should have built up more gradually. That would have been a really good time to resume meditation, start therapy, start to process my grief, begin a gentle exercise program. I did none of those things. I just threw myself back into my hectic life like nothing had happened. The political unrest in the US had been affecting me already. Add COVID anxiety, dose reductions done 3 different ways, an updosing error, and a steroid nasal spray, and you get a perfect storm for a crash. So I actually feel that I've screwed my life up completely. I've certainly set myself back. Just how long depends upon when I stabilize again. 

 

3 hours ago, Cigale said:

 

I can’t tell you how much I appreciate your support. This is such a lonely, scary journey, and it is so comforting to know there’s someone there to reach and tell you it is going to be okay.

I appreciate yours, too. And it IS going to be okay. We just have to hang in there for a bit.

Edited August 28, 2020 by Dejavu

[Cigale]

Oh @Dejavu - Yes, I do think we are kindred (not kindled 🤪 souls)! Your reply made me laugh and smile! I am going to check out Lauren Ostrowski. I'll take all the help I can get with sleep. Thank you my friend!!

[Cigale]

Hello @Dejavu - Reading your last post over again, I just want to let you know how much I appreciate your perspective.

 

4 hours ago, Dejavu said:

At least I can be (reasonably) certain I won't be suddenly slingshotted into hell by a nasty wave. There's comfort in that.

I had not really thought our situation like this. And it's a pretty positive take on our kind of hell. Got to keep looking for those silver linings.

 

5 hours ago, Dejavu said:

Oh, hell no! Wrong therapist! Wrong, wrong, wrong! You do not deserve that, and it's not good for you!

Yes I agree with you. The challenge is that I am in this little village in France and there aren't many therapists taking new clients. It is also pretty challenging to do therapy in a second language. You have given me an idea though and that is to look for an American therapist that is willing to do remote therapy. Now how to find someone who gets ADWD...

 

5 hours ago, Dejavu said:

So I actually feel that I've screwed my life up completely.

And this as you know from CBT is catastrophizing and just not true. You've just hit a bump in the road and will get through this, as you have before. And once you stabilize, you will have even more super powers to help get you to zero and recovery!!

 

Take care - Cigale

[Dejavu]

Thanks for calling me on the catastrophizing. I'm still learning how to spot it. It's amazing how automatic it has become for me to bully myself. I have a lot of work to do.

 

What a great idea to find an American therapist. Telehealth is wonderful. I hope you can find someone who is a little more evolved, WD-wise.

[Cigale]

Some notes from the past week - with no change in medication (5mg Lexapro at 830am), no supplements, no caffeine or alchohol. Symptoms of anxiety, depression, SI and insomnia have increased significantly. New symptoms include nausea and strange head pressure that I haven't ever had before. Feels like I have a helmet on my head and I have the urge to constantly massage my scalp. My body and brain is exhausted. What I wouldn't give for a refreshing nap.

[sunnysideup69]

Hello @Cigale, dropping by to see how you're doing. Sorry you're not feeling good.

I read earlier that you don't really get windows and waves but from the above, sounds like you're in a wave to me, as there's a worsening of symptoms. Ugh! This process is such a pain, isn't it.....but the wave will pass and you'll go back to baseline again. You might find that your baseline will have improved a little, also, after this temporary worsening.

 

Thinking of you, sending hugs xx

[Cigale]

Thank you @sunnysideup69 - You know, actually I feel like I don't get much in the way of windows, but do get hit by waves. Though looking back I may have had two times when symptoms lessened significantly - maybe windows. Heck, I don't really know what is going on to be honest. I just long for some relief, a sign that this is temporary.

 

I am trying to be hopeful but pretty down today. I appreciate your visit and hope you are feeling better post run. Take care!

[sunnysideup69]

Just now, Cigale said:

Thank you @sunnysideup69 - You know, actually I feel like I don't get much in the way of windows, but do get hit by waves. Though looking back I may have had two times when symptoms lessened significantly - maybe windows. I am trying to be hopeful but pretty down today. I appreciate your visit and hope you are feeling better post run. Take care!

 

Yes, that's what I'm thinking. Your baseline is your general feeling, most days, but now you're having a wave. I think you're right, maybe your windows don't seem much at the moment, just a tiny bit better.....but that should improve.

I'm ok, a bit flat. Yesterday, was so knackered post running on Thursday, I went back to bed at 5pm. 😂 What an exciting life we lead, eh?!

 

[Erell]

Dear Cigale

 

One thing that helped me to understand better the process was when Rhiannon told me that "Windows and waves" are only a metaphor to describe the fact that CNS 's repair work is all about ups and downs.

 

While stabilising on Paxil, Like you I didn't seem to have great windows, I rather was in a constant challenging state with some harder spikes.

 

Ups and downs : the process is not necessarily about beautiful Windows  and hard waves. 

 

But what we do know thanks to all the stories shared is that the intensity of the downs seems to lessen with time while the ups get gradually brighter.

 

Thinking of you, and sending you much love ❤

[Cigale]

@Erell - You are truly the most generous, compassionate person I have ever met. With all you are going through, you still find the strength to help me. You are an angel!

[Erell]

Quickly stopping by to give you hugs 🤗

How are you doing these days?

[Cigale]

Bonjour @Erell - Thank you for checking in on me and sending a sweet hug. I hope you are continuing to improve my friend. Your strength and resilience is incredible!

 

Unfortunately I am sorry to admit that I am really struggling. Despite good sleep hygiene - darkened windows, yoga before bed, gratitude journal, no screens after 9pm - sleeping is still very difficult. I am waking every couple of hours with cortisol surges and dread. I get about 4-5 hours of broken sleep. Most of the day (especially between 11 am - 5 pm), my anxiety is about 7 with random spikes of terror that leave me in a full sweat and nauseous. This is happening even when I am doing something I normally love, like petting Stella. Also oddly, I am losing a lot of hair now. 

 

Almost 7 months into my reinstatement, I have to admit that I am losing hope. I feel so permanently broken and trapped by the lexapro, that I feel is making me worse with each passing day. I just wish I could get a break, a sign that I am healing. 

 

I am sorry and wish I had a more positive update to share. 

 

Huge hugs 🤗 !

 

PS - For the record, haven’t changed anything, added any supplements. Take 5 mg Lexapro at 830 am with breakfast. No alcohol, no caffeine, no processed sugars. Every day I drink 2-3 liters of water, meditate at least twice, and do lots of breathing and AAF to move through the day.

[Dejavu]

It took me 10 months to stabilize @Cigale. It's coming. Hang in there!!

 

Sending you healing energy, my friend!

[Cigale]

Thank you so much @Dejavu for your encouragement. I will take all the healing energy you got to give!

 

How are you doing? Sending you healing hugs 🤗!

[Hanna72]

Dear @Cigale

I know how you feel.I am so sorry that you are struggling. 
Yes we are doing everything we can, and still we find ourselves thinking why do I not feel better.

Its a hard road to be on, and if people only knew what we are dealing with we would all have a golden metal around our neck for bravery, strength and hope.

I tell myself, ok if nothing is working for me, I always have time. Time is the one thing that will work with me. 
You are so strong and courageous and such a kind soul. 
 

There is a lovely quote from mr. Tolle that I send your way
 

”Being at ease with not knowing 

is crucial for answers to come to you”

 

Hugs to you🙏

[Cigale]

I’m so grateful for you dear @Hanna72! I wrote that quote in my journal. 🤗 

 

i hope you’re feeling better. Take care!

[Cigale]

Some positive progress I think. Last night I got 6 hours of sleep, waking only once without a cortisol surge. First time in a several weeks. Ironically, I did everything wrong before going to bed. I ate a late dinner, was up late watching videos, and didn’t do my gratitude journaling. I went into the evening thinking nothing I do seems to help, so why bother. Deep down inside, that got me to relax and just roll with symptoms...I feel like I surrendered to the struggle. Not sure I can or even want to replicate it, but at least it gives me something to ponder 🤔 . I kind of feel like I am just getting to know myself through all this.

 

Sending healing and hope to all!

[Erell]

6hours of sleep, that's nice ! 😊

 

Your post made me laugh, it reminds me one evening during my "Paroxetine holding" : I was acting and thinking like a  sulky child thinking "what the hell, nothing is working anyway", and slept fine too

 

Maybe it is a matter of "let go". Or maybe just the unpredictable pattern of recovery. Or both. Who knows ☺

 

In WD, all seem to be about balance, but this balance can be hard to find. And our destabilised CNS might have differents needs everyday, which means a different balance everyday.

 

I try to find a balance between focusing on selfcare and forcing myself or "trying to act like it never happened/faking".

 

Anyway, I'm glad you had a better sleep ❤

 

 

[Cigale]

1 minute ago, Erell said:

a balance between focusing on selfcare and forcing myself or "trying to act like it never happened/faking".

 

Oh my @Erell! This made me smile!! It is 100% me for the last few weeks in particular. It's silly really but it helps me to know you are do the same thing. You are such a hero for me!

 

How are you my friend? I hope you are continuing to improve. Some day we will all dance together!

 

Healing hugs!

[brassmonkey]

This sounds a lot like the concept of capitulation that I have talked several times around the site. Each discussion is a bit different so do a site search, I think you will find it interesting.

 

[sunnysideup69]

Hey @Cigale, dropping by to say hello, reading that you felt bad ....am sorry, but glad the most recent post showed some improvement. Hope you've had some nice time offline this weekend.

Every time I do some self care, I remind myself that it is like 'money in the bank.' I might not see the benefit of it now, but it will accumulate and the payoff will be at a later date. In the beginning, not much worked for me, either....

You've got this, you're gonna get better ❤️ 

[Cigale]

Thank you so much @brassmonkey for taking the time to point me to your posts on capitulation. I have been doing more reading and the concept seems to be something I can embrace. And thank you for introducing me to Dr. Herriot, someone else I can learn from as I see that he had his own struggles.

 

And thank you @sunnysideup69 for your visit! It is great to see that you are coping so well with your return to work. You've got this!!

[Caroline16]

Hi Cigale!

 

I've just read what you went through for the last days and I must say that I admire your strength and your courage. It is a good thing that you come on SA to ask for virtual hugs and encouragements: you take care of yourself doing this and it is so valuable to be able to do so! ❤️

 

Reading you, there is a thought that crossed my mind: it looks like you do everything that is supposed to help you (meditating, gratitude journal, no screen after 9, etc.) and I am wondering if you really feel good following theses "rules"? Personnally, I am not able to meditate, it makes my brain ever more exhausted -- but I relax with other ways that I found out help me. I don't like to write in a gratitude journal, I prefer being grateful "in my head" as soon as something lovely happens to me. And I watch my smart phone until I go to bed and I sleep well! In short, what I learned with my psychologist is to find what does help ME, and I have to find it by myself by trial-error. Just follow your feeling to know if you really like doing something and if it really helps you.

 

But I know that you are very "raw", in a very vulnerable state, and it may not be easy to make exploration right now.

 

I hope you will find an excellent English-speaking therapist that could treat you via Internet...

 

I send you a big hug from Montreal to Provence! xx

[brassmonkey]

Dr Herriot is a very interesting man. I visited his home in the Dales, a very lovely little village in beautiful countryside. If you get a chance to watch the TV series "All Creatures Great and Small" I highly recommend it. I haven't read the books, but my wife loves them.

[Cigale]

Thank you @Caroline16 for the visit and advice. I hope you are doing well on your very wise and slow taper. Yes, I am trying to find things that work for me, but it is a moving target. But I do find meditation to help most of the time. And long walks with my doggies. But I will keep following my feelings and being hopeful! Merci!

[Caroline16]

Hi @Cigale

 

You are so right, it is a moving target. I have to adjust everyday to what I am really able to accomplish. Most of the time, I need a daily afternoon nap and I cannot overload my schedule at all.

 

You are lucky to be able to meditate: I think I don't really master what it is, actually! That might be my problem and why it makes my concentration exhausted when I try!

 

My slow taper goes well. I am at 6 mg since two weeks; I have very occasional dizziness when I turn around, and I notice that my sleep is not as profound as it was before. But it tends to adjust during the last two weeks of "hold".

 

Prends soin de toi et à bientôt! xx

[sunnysideup69]

Hey @Cigale,

Hope you're enjoying some quality offline time, however you're feeling.

Sending hugs XXX

PS do you give yourself treats for your progress, however small?

 

[Cigale]

Thank @sunnysideup69 for the visit and sweet hugs! It is so nice to read that you are back at work and doing well. I admire your strength and positivity, and do try to gather some hope from your very presence. I hope you continue to improve and flourish! 

 

I so wish I had some good news but I am not well. My dad is dying, but due to my unstable condition I am unable to travel to the US to be with him and my sisters. And my family is upset and angry that I won’t be coming home. My heart aches when I think of the fact that I won’t be able to hold his hand or hug him one last time. 

 

Hugs, Cigale

 

 

 

[Hanna72]

Oh dear @Cigale

I am so sorry to hear about your your father. My heart breaks for you. 
You are such a kind soul. You must not take to heart how angry your family is at you. They are probably taking their own sadness and hurt out on you. Your own well-being is very important and you are the only one who can make the decision on what you can handle.

Youre father knows how much you love him. He is with you in spirit no matter how far apart you are.

 

“The beauty of a memory is that it is always there

Like a penny in your pocket 

you can take it anywhere 

 

And when your heart is heavy 

and your eyes are filled with tears

You can focus on a memory 

and travel through the years 

 

Your heart can visit happy times 

when laughter filled the air

and the presence of your father 

will lessen your despair 

 

My thoughts are with you 💖

[Erell]

My dear Cigale,

I send you all my love and my hugs.

Is your husband with you ? 

❤

Edited September 13, 2020 by Erell

[sunnysideup69]

Oh @Cigale, I'm so sorry about your father. What a thing to be going through at the same time as WD. It's so tough.Sending you massive hugs xxx

[Cigale]

Thank you @Hanna72, @Erell and @sunnysideup69 for your hugs and support. My husband is with me and he is doing what he can to help me cope. I just can’t believe how broken I am, at a time when my family needs me. I’ve always been there for them. And @sunnysideup69, I know you’ve been through this and just can’t imagine how. I’m so sorry.

 

I do hope you all are doing okay. Hugs.

[Caroline16]

Oh! What a rough patch to cross (quel moment difficile à passer). I send you courage, softness and tenderness. Be kind to yourself. I am sure you'll find a way to send your love and your presence to your father from where you are. xx

[Dejavu]

@Cigale, I can't say much more than everyone else has said. I know this is heartbreaking and difficult for you. I am sure your father knows you love him and feels your presence, even though you cannot be there physically. As for the rest of your family, don't be too hard on them. People simply cannot understand this syndrome unless they've lived it, and we wouldn't want them to. You know your truth, and like everything else in withdrawal, you have people here who understand. Time enough later to deal with your family. Right now it's about you and your father.

 

Grief is difficult to manage in withdrawal, but it can be done. Take care now to build up your non-drug coping tools and your support system. Sending all my healing energy and light to you today. Take care of you!