Cigale: reinstating help

[Cigale]

Thank you @Caroline16 and @Dejavu for the love. 

 

I hope you all are doing well. Sending hugs!

[sunnysideup69]

21 hours ago, Cigale said:

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.

 

Little tiny steps through. You're in my thoughts and prayers.

[Cigale]

Hello my dear friends! 

 

I want to let you all know that I am doing a bit better. I have moments of lower anxiety and have had a couple of nights without cortisol surges. My focus has been on trying to live life despite my symptoms (in a word “acceptance”). When I can push myself to do the things I know I love - cooking, gardening, reading, exercising, connecting with friends - I do feel more grounded and calm later in the day. I am meditating more regularly and trying to take the time to notice the good in each day. 

 

I am also working on accepting the situation with my dad and am giving him all the love I can from such a distance. 

 

And also, I took @sunnysideup69’s advice and bought myself a lovely little scarf this week 😀!

 

On 9/13/2020 at 8:05 AM, sunnysideup69 said:

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

 

I hope you all are finding more peace in your lives. Sending healing 🤗!

[Caroline16]

Hi Cigale!

 

So sweet of you to give us news. I am so happy to read that you feel better than last week!

 

Congratulations for how you take good care of yourself by doing the activities that bring you comfort! Wow! You are full of wisdom. 

 

Enjoy your new scarf!  That is such a good idea!

 

I send you healing and hope too. xx

[sunnysideup69]

@Cigale Yay! I'm so glad you treated yourself. Plus, sounds like you are making progress with symptoms.

Sending you strength and love across the airwaves for you and family ❤️ 

[sunnysideup69]

Hello @Cigale, thanks for stopping by my thread. Still adjusting to going back to work but thankfully, wave passed and it was minor. I'm definitely healing....a LOT. You're still very much in my thoughts and prayers. Sending lots of love to you at this difficult time.

[Erell]

On 9/19/2020 at 6:01 PM, Cigale said:

I want to let you all know that I am doing a bit better. I have moments of lower anxiety and have had a couple of nights without cortisol surges.

I'm glad to read you're having some relief. And I hope you can have some more.

 

Thinking of you in this challenging time, and sending you lot of hugs ❤️ 

[Cigale]

Thank you @sunnysideup69, @Caroline16 and @Erell for stopping by to share your support and especially hugs. I really need them as it has been a rough week and I’m struggling to be hopeful. I hope you are doing okay and get out for some sun today. Hugs!

[Cigale]

Hello @Gridley - I hope you’re having a good weekend. I could use your wisdom, knowing full well there are no sure answers. I’m 7.5 months into my reinstatement of 5 mg lexapro and really struggling to stabilize.

 

My most difficult symptom - constant anxiety with terror surges - continues to intensify, especially bad between 10 am to 6 pm. Sleep is light with night terrors. Looking at my notes I haven’t had a day below 7/10 anxiety since June 21. As a result of this constant strain, I am having more trouble functioning on a daily basis. I’m having trouble cooking, following recipes/instructions, doing our shopping, simple tasks. And I’m isolating more which really scares me. 

 

I haven’t changed or added anything, and losing hope that the reinstatement will work, that I’m making things worse by holding. Which would mean I should try to taper now, all my call of course.

 

Do you have any advice?

 

Thank you for your guidance. And congrats of getting to your final cut of this awful drug!

 

Take care!

[Gridley]

@Cigale

I'm sorry you're suffering.  

 

As you said, there are no sure answers.  Sometimes reinstatement works, sometimes it doesn't.  You reinstated within the 3 month period during which reinstatement most predictably works, but you reinstated a higher dose than we would have recommended.  It's possible that you overwhelmed your system.

 

I have a few questions, please.

 

1.  How did you feel from the time you reinstated on Feb 18 until June 21?  

2.  During this period did you feel better or worse than before you reinstated?

2.  From June 21 to now, have you been getting better or worse? 

 

It's possible that it could take this long or longer to stabilize.  It is also possible that this amount of the drug is too much for your system. 

 

 

 

 

[Cigale]

Thank you @Gridley for taking the time to try and help me as is possible given the uncertain nature of this process. Here are some answers. Though if you need more detail or a different format, let me know. I appreciate your guidance. 

 

50 minutes ago, Gridley said:

1.  How did you feel from the time you reinstated on Feb 18 until June 21?  

 

The first three week were rough, and insomnia was the worst then. The second week of reinstatement I had 0-1 hour/night sleep. March until April 11, anxiety was 7-8/10 and I had to force myself to eat. Sleep average of 5 hours per night. The second half of April, May and June were better on average with 5-7/10 anxiety and eating better. I had a 5 days in a row in April where my overall symptoms were 5.5/10. I had so much hope.

 

54 minutes ago, Gridley said:

2.  During this period did you feel better or worse than before you reinstated?

 

I felt slightly worse after reinstating and also just different. Before reinstating, I was more irritable and depressed than anxious. I had more energy and motivation. During that time I was able to work on projects. Plus I could exercise (run and ride) and feel much better, even relaxed, afterwards. For the first 50 days of WD, I was sleeping well and could nap and I had no trouble eating. But then tinnitus set in at night and I became really really depressed. And then my psychiatrist said I had relapsed though my original problem was insomnia and light anxiety.

 

54 minutes ago, Gridley said:

2.  From June 21 to now, have you been getting better or worse? 

 

I have been getting worse, and am less functional, more anxious and much more depressed. Sleep is light and interrupted with night terrors. Anxiety is high on waking and only decreases around dinner. I have trouble eating lunch. My thinking is obsessive. And I am starting to have more cognitive issues, trouble focusing and following through on tasks. One odd thing is I can’t remember what I like to eat or have for meals. 

[Gridley]

@Cigale

 

Thank you for your very clear answers.  As you've said, it will have to be your decision whether to hold longer.  My sense of the situation from your symptom pattern is that the reinstatement didn't work, perhaps from reinstating too high a dose, perhaps due to an adverse reaction (since you felt worse immediately after reinstating), perhaps due to other, unknown, reasons.  From what I read, you do seem to be getting worse and it may be true, as you wrote earlier, that you may be making things worse by continuing to hold and that the Lexapro is not good for you.  If that is the case, the best path may be to begin a 10% or less every four weeks taper to zero.  It's ideal to taper when stable but sometimes that's not possible.

[Cigale]

Also @Gridley , I should let you know that my dad is dying and I can’t travel to the US to be with him and my sisters. I am very close to him so this is difficult.

[Cigale]

Thank you for your advise @Gridley. I do appreciate it. Take care, Cigale

[Gridley]

@Cigale

I'm so sorry about your father.

[Cigale]

Wisdom from Shep:  When symptoms are viewed as teachers and guides and you walk with them with curiosity and not fear, leaving Plato's Cave turns into a journey of adventure and skill building.

[Erell]

12 hours ago, Cigale said:

Wisdom from Shep:  When symptoms are viewed as teachers and guides and you walk with them with curiosity and not fear, leaving Plato's Cave turns into a journey of adventure and skill building.

I love Shep's wisdom too and often refer to it

I think this quote is particularly powerfull, but viewing symptoms as teachers takes practice ! 

I like the idea of watching symptoms with curiosity instead of fear.

 

I'm glad to read that Gridley advised you.

I'm sorry that you have to go through this, and wish we could have more certainty in this process.

 

If you choose to reduce your dose, remember that if the idea of a 10% drop makes you uncomfortable you can try a smaller and see how it goes.

 

Whatever road you choose, you have all my support.

[Cigale]

Good morning @Gridley - I want to thank you from the bottom of my heart for your patience with me. Never have I felt so lost and vulnerable, and needy as I have these last few months. Every time I reach out for help, you (and so many others) have been there to reassure me, to offer your hard-earned wisdom. I am so grateful and fortunate to have you in my life and I don’t want to abuse this gift.

 

So I am working on reinforcing my coping skills and addressing some unhelpful habits. I am driven and tend to obsess about things, believing if I focus on something long enough, I can just think my way through it. So along with spending too much time here trying to compare and contrast my situation to others (never a good idea, ever), to find some magic path, I have been obsessively consuming self-help content. And it’s an unhealthy, frantic consumption, like someone mindlessly eating boxes and boxes of chocolates. (Do I ever miss chocolate 😉!) 

 

I know what I need to do to help myself. Whether it is AAF or DARE, CBT or ACT, I have the tools to work through the minutes, hours, days. I just have to slow down, breath deeply, and use them mindfully, over and over and over. I have to be willing to catch myself falling and lift myself up no matter how hard I fall. I need to relearn how to live my life, to do the things I need to do no matter how difficult it feels. I also need to do what I can to be strong for my dad and sisters and this difficult time. At the same time, I have to find balance and listen to my body so I am careful not to over reach.

 

For the next couple of weeks, I am going to take a break from this community and try to engage with life more fully as best I can. Learning to live with and learn from my current symptoms will hopefully strengthen me for the taper. And thank you @Erell for reminding me this takes practice since I am not very disciplined at all.  

 

I hope you all continue to find peace and beauty in your lives. With love and heaps of healing 🤗 !

[Gridley]

@Cigale

 

Very wise words.  You will make it through and be even stronger on the other side (yes, you are a strong person).

[Erell]

On 9/28/2020 at 4:02 PM, Gridley said:

(yes, you are a strong person).

 Yes, you definitely are !

 

How are you doing on your side ?

 

Still holding ?

 

Big hugs ❤️

 

[sunnysideup69]

On 9/27/2020 at 1:03 PM, Cigale said:

Thank you @sunnysideup69, @Caroline16 and @Erell for stopping by to share your support and especially hugs. I really need them as it has been a rough week and I’m struggling to be hopeful. I hope you are doing okay and get out for some sun today. Hugs!

 

Hello Cigale, came here to see how you are. I'm sorry you're feeling worse, for sure your dad dying will be impacting upon your nervous system, so do also take that into account.

It's so hard, because there is never a perfect time to taper....life is always presenting us with challenges. Imminent bereavement is a massive one. Am here to chat via message if you need. Sending love and hugs xxx

[Cigale]

Hello @Erell, @sunnysideup69 and @Gridley - I hope you are all doing well and staying safe. A quick update to let you know that I am doing my best to cope but still very uncertain (and afraid) of what to do from here to stabilize. Just trying to move myself from moment to moment and do what I can to support my family and love my friends. Healing hugs to you and thi supportive community. 🤗 

[Erell]

Dear Cigale,

You're going through a very difficult time, anyone would be impacted.

It sounds like you're very strong, and I wanted to send you my hugs ❤

 

9 hours ago, Cigale said:

 still very uncertain (and afraid) of what to do from here to stabilize. 

I can understand, deciding between holding or start a taper can be  hard.

Do you think it could help you to express here some of your doubts and discuss it together  ?

Nobody can give you certainty, but sometimes we get stuck in our internal dialogue and sharing thoughts might help. And we are a peer support community 😊

 

[Cigale]

13 hours ago, Erell said:

And we are a peer support community 😊

 

Oh @Erell you are so wise and kind! Thank you so much for your offer to advise me. I do think it would help me to share my doubts about next steps. 

 

Since posting on Sept 27, I have noticed some slight improvement in some symptoms:

- reduced night terror surges

- a bit lower anxiety levels during the day - 6/7 out of 10 on average

- very little SI (so thankful for this)

- slightly more of an appetite and my weight has been stable

- a bit easier to concentrate, follow directions, recipes

 

Symptoms that have changed, worsened:

- depression, crying for no reason

- deep apathy

- headaches (new symptom)

 

On average, my days are challenging and I have to push myself to move to the next task. Though I am at least doing the minimum - shopping, cooking, cleaning. My sleep is very light and I am so tired and yet wired during the day. I can’t rest or nap at all since that kicks off terror surges. Also, as you know, I am facing some difficult life challenges that would be difficult for any one. 

 

So looking at all this, my fear with starting a taper is that things will get worse than they already are and I won’t be able to function at a time when my husband and family need me. And yet, I do believe in my heart that Lexapro isn’t good for me. I feel like a shadow of my former self - no confidence, motivation, no joy. But I need to be more hopeful I know. I just wish I could have a window, a sign that I am doing the right thing. I don’t understand why I was doing so well this spring and have gone downhill since the end of June. 

 

I have done some planning for a possible taper and would follow @Gridley’s lead and crush and weigh. I would reduce just 2.5% to start. If I were to start to taper, I just wonder how/when I will know it is the right thing to do? I think I have read that it can take 5 days for the body to register a Lexapro dose change. I believe once I commit to tapering I would need to stick to it or risk kindling, right?

 

In all this I know there aren’t any answer, just experience and advice. I welcome any wisdom you can share with me.

 

Bisous, Cigale

 

[Gridley]

4 hours ago, Cigale said:

I believe once I commit to tapering I would need to stick to it or risk kindling, right?

 I don't think there's a rule that you have to stick to it if the taper isn't working.  Certainly you don't want to kindle, but as always, if you do decide to taper, you'll want to listen to your body rather than adopt a "do-or-die" approach.

 

It's a hard decision, I know, whether in your situation you should taper.  I do think the 2 1/2% reduction, if you taper, is a good choice.  I wish I could give you more guidance.   What I do is try to go inside and see what feels right.

[Cigale]

Update: I said goodbye to my father on Friday, and today has been incredibly difficult. Debilitating anxiety upon awakening, and the terror surges won't stop. Tried meditating and tapping. I went for a walk. I haven't been able to eat. I feel truly stuck in hell, unable to stabilize on Lexapro and scared to taper. From here, I can't see my path to healing.

 

I hope any one reading this is finding peace.

[Hanna72]

@Cigale

I am so sorry for your loss 💖It truly breaks my heart how life is throwing huge challenges your way. 
You are in my prayers dear cigale🙏

[Frogie]

@Cigale

 

I’m so sorry for your loss.

 

You are in my thoughts and prayers 💕

 

Take care,

 Frogie xx

[Cigale]

Thank you @Hanna72 and @Frogie for your support and prayers. Though I can't be with my family at this time due to WD, I was able to write his obituary for them. And for that I am grateful.

 

Healing hugs to you both 🤗

[wantrelief]

I am so sorry for your loss, Cigale.  I imagine losing your father is making everything even more difficult.  If you can, try not to listen to that voice saying you won't heal...it is what our withdrawal brains like to tell us, especially when under stress.  

 

You are in my thoughts.  💖

 

 

[Cigale]

Hello @Gridley - I have been testing out my scale and crushing/weighing for a taper but am finding that when I reweigh my capsules that the weight varies quite a bit. For example, the mgpw is .068g and I want to start my taper with .067g. So I made a week of capsules of this amount and reweighed this morning and they all varied from .065g-.070, which makes me very nervous. I went through all the set up instructions to calibrate the scale and use it in the exact same place every time. Any tips?

[Gridley]

@Cigale

 

Here are some tips that Brassmmonkey put together a while ago.  Look particularly at the last paragraph, "Scale weighing variances."  What he's saying is that minor variances in weight aren't going to make a significant difference because pill weight (pw) is so much more than the amount of active ingredient (ai) so that the variances don't really matter.  A variance from .065g to .070g in pill weight, which is less than a milligram, isn't going to matter in terms of active ingredient dosage.  

 

Tips for weighing:

 

These scales can be very sensitive to air currents, fans, open windows, people walking past, breathing.  It will make the display jump all over the place.  There were times I would cup my hands around mine to shield it, which helped some.  The biggest thing was to work in a very still room, and use the calibration weight to get into the midrange of the scales sensor.  Either have the weight in place in the pan when you turn the scales on, pr place it in the pan and press TARE.

 

It took me a while to get the hang of the weighing.  I have the capsules with tiny beads and weigh on a Gemini20.  It can be a bit fussy.  I tried lots of surfaces round my house before finding the sturdiest - a low coffee-table made of very thick macrocarpa, resting on concrete blocks.  Solid as.  I also calibrate the scales before each weighing session.  If my family is home any stomping will put the scales out.  I have heard it can help to put one of the calibrating bars in the weigh-pan when weighing very low amounts, so it works in the middle of it's range rather than out at one end where it is less accurate. 

 

Pay close attention to your scale usage techniques; solid work surface, no drafts, use the calibration weight during the measuring (hit tare to reset the zero) and work with a very finely ground powder.

 

"One trick for getting more accurate readings is to keep the calibration weight in the pan while weighing our dose.  Put the weight in the pan and press the "TARE" button.  This will zero the scale but put the electronics in the middle of their range where they are the most accurate.  Now weigh your dose as usual."

 

Brass' scale tips:

Here's some of the things I've learned:

1. Work on a very solid surface, a heavy desk or counter top.

2. Have as little air movement as possible, no fans,A/C, and careful breathing

3. Put the calibration weight in the pan to bring the scale into the middle of it's range and press TARE.

4. Use a nail file to scoop small amounts of powder onto the pan and to scrape small amounts off to get the desired weight.

5. The readout will jump around a lot if the weight is between even mg levels, add or subtract powder to calm the readout.

6. Pour the powder into a folded Post-it note and then pour it from there into the capsule.

The display on the Gemini-20 will show either four or five digits depending on how much an object weighs. The scales do not have a milligram setting, but rather rely on the decimal point on the gram setting.  The maximum is 20grams which shows as 20.000.  The calibration weight should give a reading of 10.000.  Anything weighing less will give a reading of  X.XXX.  Even if the decimal point is hard to see, which it can be, the three digits on the right of the display will be the milligrams.  So a display of 0123 or 00123 is going to be 123mg.

 

SCALE WEIGHING VARIANCES

There is going to be some minor fluctuation in the readings. When it comes down to it 1mg is a very small amount and there are any number of thing that can cause the reading to vary that small amount. Any air currents will do it, any vibrations of the table, dirty hands, all of them can throw off the reading by a little.  The thing is it doesn't really matter.  The active ingredient in the capsule is a very small percentage of the total weight. Generally the weight of the active ingredient is about 5% of the total weight and frequently less.  So if your measured weights vary by 1mg the weight of the active ingredient may vary by 0.05mg. You need an extremely expensive scale and a laboratory to measure that small.  When it comes to doing a taper that amount doesn't even count.

 

 

 

Edited October 23, 2020 by Gridley

[Cigale]

Thank you @Gridley for these detailed instructions! Putting the calibration weight in the pan really helps steady the readout. And I am relieved there's some wiggle room, though just generally nervous about the whole thing. I am also still considering a liquid taper which many people seem to like. The problems is liquid Lexapro comes in 20mg/ml here in France, and I wonder how you could even work with that strength. I believe @brassmonkey has mentioned it is possible with some dilution.

 

Hugs to you Gridley on your final days of this icky substance. I can't wait to celebrate your last dose with you!

[brassmonkey]

Lexapro can be diluted with water to make what ever strength liquid you require.

[sunnysideup69]

Hey @Cigale,

I'm so sorry your father died, sending you a massive hug and I'm so glad you were able to write his obituary. It is completely normal for grief to make you feel all over the place, add WD to that and it's really tough. Sending you a lot of love and good wishes.

I see you're thinking about tapering and am also sending you massive hugs for that, too. Hang in there, lady. You're stronger than you know xxx

[Hanna72]

@Cigale

Just thought of you. Sending you good vibes.

Know that brighter days will come your way. Time is one of the greatest healers. Even sometimes when we can’t see the light, know that it is there. 
Praying for a relief for you.

Hugs to you💖