persistente: presently in a window but scared of a new wave

[persistente]

my wd pattern has changed...i would say that i am in milder waves but they are longer and more often....the constant thing is that when i am not doing well i start to think this is how i am going to be for the rest of my life...

 

 

[mstimc]

Hi persistente

I went through a period of several months where I thought I was making little or no progress, and it seemed others were recovering faster than I was.  Then all of a sudden it seemed I started on a recovery "spurt" and did better, then came another period of little progress.  I think that's fairly common.  One things that helped was to look back and appreciate the progress I'd made compared to how I felt a few months or a year before.  Milder waves are a good sign!  You will make progress--just ease up a bit on yourself; this isn't a race and healing will come.

[persistente]

Smart words.  I should analyse less and be gratefull more. Unfortunatelly, there is a long way from knowing to actually doing when I am in question. 

 

Thank you for your support.

[mstimc]

1 hour ago, persistente said:

Unfortunatelly, there is a long way from knowing to actually doing when I am in question

 

So true--our mind is so powerful and the thoughts are so difficult to separate from reality...

[persistente]

tomorrow is my 3 year anniversary of being AD free...it is miracle that human beings can survive all that my family and I had to go through

 

22.09.2017 was the last day of my mirtazepine 3 week taper, 3 months before that i came off sertraline (2 months taper)

 

3 years of constant waves and windows...waves were pure agony, they are still horrible, but not as bad....

 

i am in window last 10 days, i hope it lasts...

[Altostrata]

Hello, persistente. Good to hear you're seen some improvement.

 

How have your symptoms changed? What symptoms are currently the most troublesome for you?

[persistente]

the worst was that state of mind where i could not live...inside of me....i think i had akathisia...probably milder one than some people experience but it was happening very often during the first two years....it was more of a mental state than the need to move physically,  it would come in waves but it could last for weeks, i would wake up during the night in terror, could not sleep, (still some issues but improvement is huge), could not get up...

 

also adhedonia, the one when you have no desire to do absolutely anything...eat, drink, shower, teeth, move....nothing but breathe, that was the only thing i was doing during those waves

 

those two in combination...a recipe from hell 

 

now it is not so often and it is not so severe, i would not even call it like that but when it shows up, it sure reminds me of that hell, i also get huge fatigue...it all comes during the waves

 

i get days where i only watch tv, i eat because i need to, i move or do things because i try to protect my family from seeing me like this and not because i want, those are my waves

 

in windows i become creative, i look how to improve the quality of my life, i am not focused only on wd, i see and feel, even try to help others, it is not just about my survival...

 

[persistente]

it is 2 weeks since my close family member took her last crumb of zoloft (i wrote about her in my first post).

 

it took us 3 years to tapper her from 100 mg to less than 1 mg (last 2 weeks it was like the dust)

i personally cut each of her pills during those 3 years

 

i  made sure she had it prepared in advance for days i was not around her 

but also for days when i was around but was not able to do anything  because all that time i was in wd from my cold turkey,

 

many days i was in pure agony caused with the attempt to become free from those horrible pills and the irony is that there was no freedom at all because i had to cut and weight those same pills for her all that time in order to try to prevent the same agony happen to her

 

i wish i could describe my state of mind while preparing those pills in the right dose for her...

i should be so proud of what i have achieved, instead i am just so sad because of everything that has happen....i just hope it was not in vain

 

i red today about our member who tapered for years but after 2 months of honeymoon period the hell broke loose.

the fear is catching my brain again...it is right behind me...

 

 

 

[mstimc]

2 minutes ago, persistente said:

i should be so proud of what i have achieved, instead i am just so sad because of everything that has happen....i just hope it was not in vain

Hi Persistente

It wasn't in vain.  What is past only has value when it points us to what we can become instead of beating ourselves up for what is done and over.  Every human being on this planet would  love to go back and change at least one thing in their pasts.  Its what we take with us into the present and future that matters.  Anxious thinking wants you to keep replaying your past so it retains its power over you.  Once you let go, it loses that power.

 

We all recover in different ways and in different patterns.   When I was in WD, I often found myself a little jealous of those who seemed to be recovering faster or better than I was.  I also saw others who seemed to be doing fine and then hit a wave.   I accepted I'd recover in my own time and on my own terms.  Just try to remember everyone can recover no matter what may happen in the short term. 

[persistente]

6 minutes ago, mstimc said:

Hi Persistente

It wasn't in vain.  What is past only has value when it points us to what we can become instead of beating ourselves up for what is done and over.  Every human being on this planet would  love to go back and change at least one thing in their pasts.

I agree but I would never change the fact I have made her taper. It was very hard for me but there was nobody else to do it. It had to be done. I just hope my effort in the tapering will avoid her wd. 

[mstimc]

You did the right thing.  Otherwise she would have been trapped in dependence. You did the best thing for her. And I'm sure you'll be there to support her if and when she needs it.

[persistente]

40 months off after ct. Not feeling great but not in wd hell anymore. Some days I feel off. But nothing even similar to those waves of horror. Time heals.

[Leo1983]

Thanks for dropping in my thread. 

 

Can you explain how you feel at 40 month off after a CT? 

 

Thanks for the hope.

 

 

[persistente]

i have been living 2 lives since i have stopped the ADs. one when in wave, another when not in it. in waves i had many symptoms. lets concentrate on psychological and cognitive for now since my physical health is complicated issue.

anxiety and fear which is not possible to handle (i call it mental akathisia), adhedonia, no motivation, terror, insomnia, not possible to think or concentrate or handle even a small task...

when i was not in wave those issues were much better, often there were no those things at all.

 

with time the waves were easier, shorter. those issues were there but not all of them and not that intense.

most of those horrible things i did not see for months, sometimes it looks like some will catch me again so i am not ready to call it success but i think i survived

[mstimc]

1 minute ago, persistente said:

i am not ready to call it success but i think i survived

That is a start!  A slow, unsteady reduction in waves is typical in recovery.  It sounds like you're well on the way to full recovery, especially since you can see a clear division between windows and waves.

[persistente]

On 1/25/2021 at 10:08 AM, Leo1983 said:

Thanks for dropping in my thread. 

 

Can you explain how you feel at 40 month off after a CT? 

 

Thanks for the hope.

 

 

i tried my best to explain above. it is that feeling of wanting to live instead of having to live that makes a huge difference. 

12 hours ago, mstimc said:

That is a start!  A slow, unsteady reduction in waves is typical in recovery.  It sounds like you're well on the way to full recovery, especially since you can see a clear division between windows and waves.

thank you for being here. 

[persistente]

I thought I was getting to the end of tunel. But no. Most of the May was a wave. Not all the time. I had few days of break from it. 

 

Strange is that I have never had a wave so long. Usually it was a week every month. This is different. It is so hard to feel the hope that the end will come and be thrown into the hell again. 

 

I could never imagine so much pain would last for so long time. I can just hope it is not forever. 4 years off are so close. At 2 years off I thought I was nearly done. 

[Leo1983]

Its just the worst isnt it. Im 35 month and i sit here thinking am i actually doing the right thing here. Watching my life pass feeling some sort of crap most days. 

 

I feel the pain.

[persistente]

I have no idea what I am doing at all. I suffer from horrible depression. I know I need to do something, move, change my point of view, find a reason to feel better....but I can not. I just wait for suffering to end. And it is not ending. The pain is unberable. I do not know what can I do.

 

Try antidepressants again? I did 9 years ago. I wished I have never try to stop them. Maybe if I tappered...

 

If anyone thinks about ct...stop thinking about it...anything else would be better solution for me. 

 

 

[persistente]

4 years off today. I have had just a glimpse of those horroristic waves during last few months. I will write my sucess story in few months.

 

My life has been very hard due to my dissability for the last 20 years but it has got unberable for the first time during wd. I was not sure I would survive but I did.

 

9 years ago I was given AD instead of more rehabilitation and life adjustments support. It happens very often with neurological deficits. I wished I was smarter at that time to realize there was no chemical imbalance in my brain. There was no balance betwen things I wanted and things I could do.  You do not treat that with drugs. I need to address so many issues that I could not address 9 years ago. It will be hard but I have survived horroristic AD wd cold turkey 2 drugs at once!  That means I can do anything!

[ThatOneGirlStitch]

I’m glad you pushed through. When one of us gets through a tough wave it inspires the rest. I hope the rest of your journey is short. Thank you for your update. I just started on this journey and I know I haven’t seen the worst yet. (Also CT) You post makes me think maybe I too can get through it when it comes.

[arbor]

Hi @persistente  I hope you're continuing to feel relief from w/d.

All my best to you,

Arbor

[persistente]

i am in wave at 5 years off. all the progress that I know I had in the last few years seems like there was none.  i was hoping to write success story at this time. last five days i am trying to survive day after day. my brain does not work. can not concentrate, can not think. can i go through this again and again? my life is too hard even without this. i can not even write about myself and my problems.  i do not even believe it is wd. my brain plays with me again. 

[Onmyway]

Hi @persistente

has anything stressful happened recently? Did you have alcohol or other psychoactive substances? Did you have Covid? It may not be necessarily withdrawal that you have but some other assault on your nervous system. What are your symptoms?

OMW

[persistente]

this is wd. wave or whatever i have had for the last 5 years. stress is always around me. and this is something that happens for no apparent reason. i have disability, my aunt that i talked about in my first post is not feeling well. we have been through breast cancer diagnoses and treatment for the last 8 months. she is not dealing well psychologically. needs to go back to meds that it took me 3 years to get her off. but nothing of this is recently. 

[Onmyway]

@persistentestress does accumulate. So you may have dealt with it ok in the beginning but now it may catch up to you. Everything you've said seems overwhelming to me. Are you getting support? I can't imagine dealing with all of that in withdrawal. My heart goes out to you.

 

If it is withdrawal which it could be, of course, the only thing you can do is wait it out. If it's indeed psychological suffering from all that is happening to you, then you'd need to look for support and possibly therapy. 

 

What are your symptoms right now?

OMW

[persistente]

I will be ok. I am very strong person. The amount of suffering I have been through before the ADs was huge. But I managed to stay above the water all this time. It is wd waves which make all unberable. But they pass. It just seems strange that after 5 years they are still so strong. 

[persistente]

i am in a window from yesterday...this is unbelievable. 5 years of waves and windows. it started a month after i was off and it has been going on from wave to window to wave...for 5 years. i have been through aprox 50 waves and each time i do not believe it is a wave. 

 

this window feels too good as few did before. i feel little manic. not normal. but that i can control. wave i can not. 

 

i will quote someone whose words mean a lot to me.

Rossetta is great!

On 1/8/2023 at 5:49 PM, Rosetta said:

If I can heal, you can, too.  You will doubt this at times as the windows and waves pattern cause one to doubt.  Over and over again, you will improve and then regress.  You must take this to heart: no regression is permanent!  You will improve again, and, often, the improvement will be better over all.  

 

At times, there will be a wave that seems much worse.  Do not despair — I mean, you will despair, that’s the nature of this syndrome, but I mean that as a figure of speech — do not believe that you are consigned to feeling worse forever just because you have a bad wave that is worse that the most recent wave.  That’s normal, unfortunately, and it does not mean you are doomed.  Not at all.  In fact, it means your brain is healing!  

 

This syndrome is entirely different than any healing we are accustomed to experiencing.  It is not linear — you do not improve continuously — on the surface — with discernible improvement over improvement and on and on.  This is not like a physical injury such as a burn that feels better every day.  Rather, you are actually improving, your brain IS healing, but it will feel as if you have fallen back when a wave comes. The most important piece of advice you can take is this — a regression means healing.  The brain is adjusting, trying out different formulas to get to balance.  It seems to over correct or under correct, and we feel those “mistakes.”

 

I went from 150 mg of Zoloft to 0 in about 6-7 weeks.  I healed.  I am still healing.  That was almost 6 years ago.  Now, I still see small improvements here and there.  My life became manageable years and years ago.  I did not quite realize that when it happened.  
 

You should have a much easier time if  you are tapering.  Smaller shocks than complete cold turkey usually heal faster — if further shocks are avoided.  This means not only tapering properly, but avoiding other drugs that might affect your system negatively.  (My thread has a few posts about these pitfalls.)

 

My tactic for making it through was to distract.  I learned to play violin,  practiced piano, and I read books — kids books without too much drama.  I watched quiet TV for kids.  Tumbleleaf is very soothing.  I think it’s on Amazon Prime now.  So is Puffin Rock.  There are a few nature shows that are quiet.  Most have animals, and scenes that are a bit traumatic, so they can be jarring.  
 

Distract from your symptoms, and take hot baths or showers.  I used to set my iPad up in the bathroom and watch a movie while I sat in the bath.  I would keep refilling the bath with hot water to stay warm.  You have to try to give yourself breaks from the symptoms.

 

Taking walks is really important, too.  They help your brain and body heal so much!

 

[persistente]

6 years off. Horrible Wave. No desire to do anything. Interupted sleep. Waking early with terror. Thoughts torturing me. It feels like the wave at the begining of this hell. I can not do anything.

 

I did not find a way to deal with waves. I only survive day after day untill it goes away. I guess I did everything wrong. I still do. I can not make myself out of this. Losing my hope.

 

 

[arbor]

Dear @persistente  Hang in there.  I know how hopeless the waves can make us feel.  We're still recovering unfortunately.  I send you hugs,

Arbor

[gentlehermione]

Dear @persistente

 

Please don’t lose hope. This too shall pass.

 

I’m almost six years out and am experiencing a horrible wave - the worst in ages. We long haulers just need more time to heal 😉

 

Sending you positive vibes 🥰

[persistente]

Thank you both!

 

It is 11 pm now. Heavy raining outside. I am getting the relief from the wave. I do not know what is there for me tomorrow but it is unbelivable how different I can feel few hours later. 

[arbor]

So glad @persistente🌻

[Onmyway]

2 hours ago, persistente said:

Thank you both!

 

It is 11 pm now. Heavy raining outside. I am getting the relief from the wave. I do not know what is there for me tomorrow but it is unbelivable how different I can feel few hours later. 

I often feel the same persistente - my mornings and evenings are so different - I feel like a different person. The same problem presented to me in the morning could cause me to go into panic mode while in the evening it would be a normal solvable issue. 

Enjoy your windows!

[persistente]

Thank you. I am back to no wish to do anything. After trying to force myself for few hours I gave up from the shower. It is too hard. I can not even explain why. It feels like I cannot do it. Mentally. Willingly. The cyrcle continues.

[persistente]

Still in the wave. But from this morning there is a small chance I will survive this one as well. And I was sure I would not make it this time. However, it looks like I am returning to some more normal state after yesrerday which was a pure day of hell.  Fingers crossed.

 

At more than 6 years off, I  get massive wave that lasts for 3 months already. Anger, despair, agitation, depression. Few hours at night I feel normal. I sleep good during the night. But everything else is so unbelivable. This has been so different this time because my waves were never so long. Or better to say I had much longer periods of stability in between waves which were never longer than 10 days.

 

I guess not all days were equally bad and I did feel better for few short days. 

 

I thought yesterday that I would finally lose my mind. My thoughts were completly not normal. I was  so agitated that I was thinking I have the only option to kill myself. I was screaming and asking my family to be nicer to me if they do not want me to kill myself. Who does that? Afterall, I am alive just because they are taking such a care of me.

 

Today I am ashamed of myself. But it is normal reaction after my behavior from yesterday. It does not look like I could have done that. It feels like that did not happen. I wished it did not.