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

[Dejavu]

I know what you mean. As hard as this is for us, its also very hard on our people. My poor husband has been a rock, but I feel so sorry for what I'm putting him through.

[Carmie]

3 hours ago, Dejavu said:

Something amazing just occurred, something that hasn't happened in 6 months. The dog did something funny...and I laughed! A real laugh! Not just going through the motions - I really felt it. Right down to my toes, just like a normal human. Wow! I've missed me.

 

That’s wonderful Dejavu, 

 

Even getting small windows and times when you feel more like yourself shows your brain is working hard to stabilise. 

 

Wishing you all the best with your continued healing💚

[Dejavu]

@Carmie, you too! I hope the new drop is treating you kindly. 

[Dejavu]

How do you deal with the disappointment and hopeless feeling when a window ends? I've only had very brief ones. Yesterday was 50% better than normal, sleep was decent, then today, I'm back in vertigo/anxiety hell. 

[Vonnegutjunky]

I would videotape myself during windows and then when the waves came I woul watch my videos , I would tell myself things like, remember how you feel now, you are getting better, hang on and remember this time..... that’s how I would calm myself becuse I often forgot how normal I felt during windows, when I was in a wave. 

[RandyJames]

@Dejavu

 

How are you doing today?  

[Dejavu]

@RandyJames, thank you for checking in on me. I'm struggling at the moment. Fearing I will never improve. Fearing that even if I do, it will be too late to salvage my career, my livelihood and my life. My job is crazy stressful, and I'm trying not to let on that I'm sick so that I don't lose clients, which just piles the stress on more. I'm not functional at the moment. Trying to meditate and float, but the anxiety is so high. I briefly updosed 2 weeks ago, then thought better of it and dropped back down last week. I think I'm paying the price. I've changed dosages 4 or 5 times since I reinstated last November. Maybe that's why I can't stabilize. Very few windows, and they only last minutes or hours. I don't know what to do. 

 

Hope you're doing better than I. How is everything going for you today?

[Tom37]

All you can do is wait I’m afraid and try to learn how to get through it. 

 

Im lucky I don’t get any anxiety with this other than the feeling of fear which is generally all mental and only in waves.

 

If you search for ‘stabilise’ in the search function you can find members over the years who have been in the same situation and the common theme is they all stabilised but at different times so don’t be afraid that at 4 or 5 months out you are still struggling.

[RandyJames]

@Dejavu, Sorry you're no better.  I'm in the same boat.  Feeling bad and worried about never improving.  I slept extra bad last night too.  I'm really having a bad time with brain fog today.  I had to speak with our real estate agent today on the phone and I felt senile.  I can barely retain any info and my anxiety is through the roof.  I didn't have any limb jerking last night but I'm having the nerve twitches going off all over and randomly really bad.  I sure wish I hadn't started smoking again too.  I quit for 6 weeks and started again a couple of weeks ago as I was reading that quitting smoking can cause cognitive problems as well so I thought maybe some of what I was having was from that but it wasn't and now I'm back at it.  It probably is aggravating the WD too. So much worry it's ridiculous.

 

Hang in there.  

RJ

[Hopefull]

4 hours ago, Dejavu said:

@RandyJames, thank you for checking in on me. I'm struggling at the moment. Fearing I will never improve. Fearing that even if I do, it will be too late to salvage my career, my livelihood and my life. My job is crazy stressful, and I'm trying not to let on that I'm sick so that I don't lose clients, which just piles the stress on more. I'm not functional at the moment. Trying to meditate and float, but the anxiety is so high. I briefly updosed 2 weeks ago, then thought better of it and dropped back down last week. I think I'm paying the price. I've changed dosages 4 or 5 times since I reinstated last November. Maybe that's why I can't stabilize. Very few windows, and they only last minutes or hours. I don't know what to do. 

 

Hope you're doing better than I. How is everything going for you today?

 

Hi Dejavu,

You will get better.  I have had at least one, 6 month hold and couple of 4-5 months holds. 

You need more time to stabilize because of the changes you have made. Changing a dose 4-5 times does take its toll on your nervous system. 

No more changes for you,  until you stabilize.  It might take couple of more months.  Whatever it takes stick with it. Trust me, been there, done that.

 

I have stuffed up with my dosages along the way.  Once or twice missed a dose, and that does set you back. 

You might have to hold even longer,  but you do stabilize at the end. 

If I can do it,  so can you.  The waves are part of the healing process.  Look at it as a wound that will take a long time to heal. Try not to dwell too much on the symptoms,  which is easier said then done.  Can you take couple of days from work, go on a holiday? 

The "wave", period will pass. I was pretty much in constant anxiety for the first 3 years.  I would have window periods,  but I was mostly living in an anxious state. It was in the fourth year that I slowly started to see a change.  Keep in mind that I was experiencing both Zoloft adverse reaction and Mitrazapine WDS.

The point is that you are strong enough to get through the waves. You have done it before.  I know that it is exhausting, to keep repeating the same process over and over again,  but accept the situation as it is. 

There is no other way to get through this,  but to be patient and let the nature do the healing .

Distract your self as much as possible.  Being in nature, helps to calm anxiety. 

Are you seeing a therapist,  someone you can talk to?

Whenever you can go for a walk. 

You are already strong by holding a job. You are blessed to have a supportive husband,  a lot of people don't. 

Sorry for such a long post.  I just want you to realize that you are a lot stronger than what you think.

You got this Dejavu, never give up. Take care,  Hopefull. ❤️

 

 

[Dejavu]

@Hopefull, I am in tears right now. You will never know how grateful I am for your support. We never know how what seems like the smallest gesture to us, may impact someone else's life so deeply. I've never had SI in my life before now, and I was feeling at the bottom of a dark deep hole with no way up - then I read your message. Thank you from the bottom of my heart. After all you've been through, no one would blame you if you ran fast and never looked back. Instead, you have chosen to stick around and help someone who needs it very badly right now. Blessings on you for that.

 

I am lucky enough to be seeing a therapist who not only believes adwd is real, he has also reviewed this site and says he will continue to do so. He supports my decision to live drug-free. I try to get out for walks, but sometimes the fatigue and dizziness is just too much, like today, and I just lie in bed ruminating and waiting for the day to be over. The neuro emotions are so strong that no coping tool works, until at night, when my body just exhausts itself and finally calms down.

 

You don't know me or owe me anything at all. But I would consider it a real blessing if you could find it in yourself to stick around for a bit. You are truly my inspiration - you went through many of the same things I'm going through now (and more!) and have come out the other side. I promise not to be a pest. 🐜🦗🐞🐛

 

By your kindness to me, I am reminded of an important memory: when I was a child, my father had a sudden heart attack. My mom and I were sitting in the ER waiting for news of his condition. I was terrified. My mom was busy talking to the doctor and I was sitting in a chair crying. A custodian happened to walk by and saw me. He stopped what he was doing, and sat down to talk to me. He told me, "don't worry, your daddy's going to be all right," and he left. I decided then that he was an angel, and maybe he was. I've never forgotten him. Over the years, I always think of him and wish him well, wherever he is. Something about your message made me conjure that memory, and I actually smiled for the first time today. Angels are everywhere - even on online forums - thank you again!👼 

[RachelSusan]

Dejavu,

I have read your posts and can really empathize with what you are going through. I have made many of the same mistakes you have made with my medications.  We need to forgive ourselves because we were either learning and or desperate to find relief.  Now that you know better, you will hold for however long it takes to stabilize. You will stabilize though. While you are waiting for that day it might be ugly, sometimes it is just putting one foot in front of another and getting through another day and then going to sleep and waking up and doing it again.  But, there is improvement out there, your life will get better. It sometimes just takes a lot longer that we expect it will.

 

I am so sorry for the loss of your mother and your sibling.  I think I read something you said on someone else's thread.  I believe it might have been you that said loosing your parents changes who you are forever.  Having gone through it myself I have to agree with you.  Loosing loved ones is the worst thing ever, but still we go on.

 

You've been through a lot and to have this on top of your looses is way to much for one person to bear. But you will bear it, and you will get through it.  There are indeed better days to come for you.  Hang in there.

 

Warm wishes,

Rachel

[Hopefull]

12 hours ago, Dejavu said:

@Hopefull, I am in tears right now. You will never know how grateful I am for your support. We never know how what seems like the smallest gesture to us, may impact someone else's life so deeply. I've never had SI in my life before now, and I was feeling at the bottom of a dark deep hole with no way up - then I read your message. Thank you from the bottom of my heart. After all you've been through, no one would blame you if you ran fast and never looked back. Instead, you have chosen to stick around and help someone who needs it very badly right now. Blessings on you for that.

 

I am lucky enough to be seeing a therapist who not only believes adwd is real, he has also reviewed this site and says he will continue to do so. He supports my decision to live drug-free. I try to get out for walks, but sometimes the fatigue and dizziness is just too much, like today, and I just lie in bed ruminating and waiting for the day to be over. The neuro emotions are so strong that no coping tool works, until at night, when my body just exhausts itself and finally calms down.

 

You don't know me or owe me anything at all. But I would consider it a real blessing if you could find it in yourself to stick around for a bit. You are truly my inspiration - you went through many of the same things I'm going through now (and more!) and have come out the other side. I promise not to be a pest. 🐜🦗🐞🐛

 

By your kindness to me, I am reminded of an important memory: when I was a child, my father had a sudden heart attack. My mom and I were sitting in the ER waiting for news of his condition. I was terrified. My mom was busy talking to the doctor and I was sitting in a chair crying. A custodian happened to walk by and saw me. He stopped what he was doing, and sat down to talk to me. He told me, "don't worry, your daddy's going to be all right," and he left. I decided then that he was an angel, and maybe he was. I've never forgotten him. Over the years, I always think of him and wish him well, wherever he is. Something about your message made me conjure that memory, and I actually smiled for the first time today. Angels are everywhere - even on online forums - thank you again!👼 

 

Dejavu,

You really come across as an absolute kind, sweet soul. God bless you for that. 

I am more than happy to help you out as much as I can and you are not being a pest.

I know how hard it is to crawl out of that black hole.

Did you get a chance to look up Lauren Ostrowski Fenton on You Tube?

She really helps to calm my anxiety.

I just listen to her sleep.meditation videos and fall asleep. 

I don't always meditate.  I find her voice really soothing. 

Please let me know if it helps you. 

Your doctor sounds fantastic. Not many are open minded and supportive. 

When you are feeling really bad, remember that it will pass. Unfortunately the brain takes time to heal.  I have had so many negative thoughts where I felt like giving up for the first 3 years.  But then slowly you see the shift  and it gets better and better.  You have to keep pushing through,  keep going. Is dizziness your main concern at the moment? 

Are you able to eat/sleep?

Does it help that you are working? 

Take care,  Hooefull.❤️

 

 

 

 

 

 

 

[RandyJames]

@DejavuHow are you doing today?  I hope you are having a better than usual day.  Just know that a window is heading your way soon.  I want to thank you so much for your input and help over my tapering.  I wish I could be of more help to you but I'm pretty clueless about all of this.  You are absolutely right that my doctor's plan was way to fast.  I had told him I want to taper very slowly and he agreed, then hit me with his plan and my stomach turned over!  

 

I did get a little more sleep last night so that is one positive thing I have going for me today.  I'm leaving now to get my walk in before my appointment.   I'll check in with you later.

 

 

 

[Dejavu]

@Hopefull, thank you for responding. Yes, dizziness, weakness and shakiness, anxiety and fatigue are keeping me barely functional to non-functional at the moment. PGAD is scary but comes and goes depending on my anxiety level.

 

I'm sleeping better than most. About 6-7 hours a night usually. Night before last was bad though - light sleep and waking often with dizziness - but last night I got a solid 6.5 uninterrupted. I'm not complaining. 

 

Appetite is very low, so I'm not eating too much, but I don't seem to have any food sensitivities. I eat fairly clean - no processed sugar at all. I've given up coffee and wine for the time being, at least until I'm stable.

 

But...Work is an enormous trigger for me. I was already suffering from career burnout before I crashed. It is high pressure and deadline intensive and after 34 years I no longer enjoy it. I'm self employed and I have no choice but to continue unless I want to lose everything I've worked so long to build. But some days I can't even sit up because the tremor and fatigue is so bad. I think that was starting to improve before I had to take the steroid rx, but 2 weeks of that plus the up and down in dose, put me back to square one. My husband who is also my business partner is trying to fill in as best he can, but he can only do so much. I will soon begin to lose clients.

 

Thank you for rekinding me that there is an end to this. To clarify - did you suffer continuously for the first 3 years or was life generally worth living during that time?

[Dejavu]

@RachelSusan, thank you so much for your continued reassurances. It means more than you could ever know. You, too, are an angel!!

[Dejavu]

@RandyJames, glad you're having a better day. I think I'm a little improved also. Good luck with your appointment. Let me know how it goes.

[RandyJames]

@Dejavu So as for the appointment I just really am left feeling concerned.  He was open to me tapering whatever way I wish but is trying to tell me that dropping my dose by 10 percent is to fast.  He still wants me to do the one drop deal I explained already.  What's more is he said that if I had a bad reaction to tapering that he would like to try electric shock therapy and that it should "fix me up."  I will not do that.  There is no way it could help the med issue.  I have known him a long time and he is truly a good guy but it's clear to me that he just doesn't get the situation.  I'm already messed up from the meds and then he wants to go under anesthesia and have a seizure.  Holy crud.  

 

I'm curious, did you have any WD symptoms when you were done tapering the Klonopin?  Did all of your symptoms start after you first stopped the Zoloft in 2018?

 

How are you feeling as the day has gone on?  I hope you've continued to feel a bit better.  It's amazing that you can manage your business at all with what you're going through.  That you've managed this far says you can make it through all of this even though it feels so crappy along the way.   You'll get back to feeling you again.  

 

 

 

[Dejavu]

Holy moly! ECT??? No way!!

 

You could try a compromise and do a 5% cut and see how it suits you. His way looks slower at first blush, but its not because he has you reducing by a greater amount every day. That doesn't give your brain time to catch up to the cuts. Eventually that could come around and bite you in the hindquarters.

 

I'm having a better day than yesterday. Not good, certainly, but better. I got 6.5 hours of sleep, and worked at home for about 5 hours. I was a shaky, anxious mess the whole time, but I did it. Would not have been able to do that yesterday. I even went outside and played frisbee with the dog for a few minutes until I started getting dizzy and shaky. But I guess if I'm able to improve even temporarily, that means I can eventually stabilize, yes? My biggest fear is that I will never stabilize, and then what does that mean for my future?

 

My klonopin taper is a long bad story, but with a very happy ending. I had my first and only panic attack in March of 2016. Thought I was having a heart attack, so went to ER. They gave me 90 ativan and told me to take 3 a day then stop. Never one word about dependence or tapering. So after 1.5 mg daily for 30 days, I CT'd and crashed. Went to my PCP, he said I had an anxiety disorder and rx'd .75 xanax daily and 37.5 effexor. Only took effexor one night because I could not stop puking. Meanwhile, went into what I now know was tolerance wd on xanax because it was only half the dosage of ativan my body was used to. I went back to my doctor and said "I'm done. I want off everything." He told me he didn't know how to get me off and sent me to an addiction specialist. That guy switched me to klonopin (a good move because the half life is longer), but then told me "taper off as you can" (a very bad piece of advice). I felt better almost immediately on the klonopin, so I cut 50% after two days. Two more days, I still felt fine, so cut another 25%. The next day, the 5 day half life of klonopin caught up to me, and - you guessed it - I crashed again very very hard. Back to addiction specialist who told me I was nuts. Then found a pdoc who told me to updose all the way to 8mg and then cut by a quarter tablet a week. She also put me on Zoloft, saying it was very gentle and I could just quit after my klonopin taper. At this point I trusted nothing in a white coat. Went online and found Benzobuddies and learned more about benzos than I ever did in any doctor's office. I did updose to 3 mgs, but refused to go any further. After a few weeks at 3mg, I felt stable, and started to taper by 1/8th of a pill every 3 weeks, but held longer a few times I think. I tapered for 15 months. I had a few symptoms for a couple of days after each cut, but nothing major. And here's the happy part: after I jumped, a few days of symptoms, and then nothing. It was over. No symptoms until I fast tapered off zoloft in 2018. This is every bit as bad as the CT off Ativan and has lasted longer. 

 

Sorry so long, but I didn't quite know how to answer your question without going into the whole story.😏

 

[DogLover]

Hi Dejavu,

 

Glad to hear you are doing better today! Hope your days get better.

 

I just went through a week of horrible anxiety (9 out of 10) and it just broke today, so I know how bad this can feel. Hang in there. The only thing that helped me was walking-it kept me from shaking.

 

Praying for you. 

 

 

[Dejavu]

@DogLover, thank you for stopping by. I'm glad you're getting some relief as well. This anxiety really is awful, isn't it? I understand about the shaking, that's for sure. Does magnesium help you with that?

 

I love dogs too. I always adopt rescues, and always have two or more. I have a 3 yr old shepherd/dobie mix who was seized from an abusive owner. She was malnourished, mangy, flea infested and parasite positive when I brought her home. She was scared of her own shadow. Now she's healthy, happy and can catch a frisbee like nobody's business. Her brother is a 2 yr old wirehaired terrier mix. They are maniacs when they play but also very affectionate. They know something's up with me and are very protective. I wish I was able to be a better mommy to them right now. 

[DogLover]

dejavu,  i can't tell if magnesium helps. i think it does, but when the heart is pounding and anxiety is 8 out of 10, it may bring it down to a 7 and i'd never really know. I.m just glad that stopped. now im just at a 2/10. omg i'm looking forward to sleep.

 

i do love dogs. i had a male boxer that i loved so dearly that passed in sept. currrently im dogless. i will rescue another sometime again, but not now.

 

dont worry about being a good dog mom, thats the thing about dogs, they are going to love you no matter what.

[Dejavu]

So true, but they deserve better than what little I can give them now. Glad my husband is a dog lover too. He takes great care of everybody - them and me. 

 

I hope you sleep like a bear tonight! Sending healing energy your way!

[RandyJames]

Your benzo WD sounds like my experience.  I was lucky that my doctor actually helped me with the taper.  Sounds like you had 0 luck with docs.  I tapered mine for over a year and then quit the Cymbalta CT.  I thought I was having benzo WD from it but I know now it was the Cymbalta.   Just like you I had a happy ending with the benzos but the SSRI hell remains.   Alto is thinking I may not be having tolerance WD at the moment but have become really sensitive to the Lexapro from missing a couple doses and trying to take it in the morning instead of my usual nightly dose awhile back.  All I know is that it feels a lot like when I was in WD and it sucks.  I barely slept last night and anxiety and fuzzy head is so bad.  

 

I hope today is another better day for you.  I bet you will adjust to your dose soon.  Like you said, if improvement can shine through at all you can make a recovery.  I can so relate to your fear of not recovering.  It's the worst.  Total limbo.  

 

Stay positive.

 

 

[Dejavu]

Update:

 

I was visiting friends on Friday night for maybe the third time in 4 months. There was a brief few minutes - maybe 10 or so - when the symptoms fell away and I was me again. Then it was gone like it never happened. In fact, things got ugly after that. Dizziness came roaring back and I started getting tunnel vision (a new one for me). I actually had to dose a half hour early, which did clear the symptoms significantly.

 

Then yesterday I had to do a few hours of work outside the office which was extremely stressful for several reasons (i.e., because of where I had to go, and because I'm horribly and permanently burned out on my job). I was dizzy, and anxious, and my vision was weird, but I did it. I white knuckled it the entire time, but I did it.

 

But today, I'm back in the hole with itchy skin, shakes, depression, anxiety and dizziness. I keep asking myself if those 10 magical minutes really happened, or did I imagine it? I cannot explain the depths of grief I suffer when these tiniest of windows slam shut again so quickly. Luckily, I don't have to explain it to you good people, since I know I'm preaching to the choir here. But even a short window is encouraging, right? (Someonepleasesayyes)

[puthappinessfirst]

7 minutes ago, Dejavu said:

But even a short window is encouraging, right? (Someonepleasesayyes)

 

Yes!!!

[Dejavu]

Thank you PHF!!! 😘

[Dejavu]

@Altostrata or other mods - or anyone for that matter - I have a question about delayed withdrawal: I wonder why some people take months to feel wd from a fast taper or CT, and some only a short few weeks or so. It was exactly one month out (to the day) when I got hit. Literally one second I was fine, and the next my life was changed and I was in hell. I know it takes some people much longer to feel it, sometimes beyond the window for reinstatement, which seems especially cruel to me. Does length of time on ADs play into it? Type of drug? Dosage? It seems that if any nexus could be drawn from these factors to delayed onset withdrawal, it could serve as an early warning system of sorts. Does anyone know of any current research on this?

 

I understand the Twin Tower analogy, but I'm curious whether such research could possibly be a predictor of time frame for emergent wd symptoms. Thoughts?

[Altostrata]

We don't know the mechanism of delayed withdrawal. It could be people have slight withdrawal symptoms and attribute them to something else for a while until they cumulate and become unmistakeable.

[RandyJames]

Hi Dejavu,

 

How are you feeling?  I hope you're having a better day of it today.   Hopefully the 10 minutes you had of feeling better, even though short, indicates that the process is slowly working.  

[composter]

Really hoping you can experience more windows, @Dejavu! Spending time with friends and loved ones, even if they may not fully understand what you're going through, can be so meaningful. Quality time is so healing. I hope despite the stress of your work and your ongoing WD/stabilizing difficulties that you can put yourself in supportive spaces.

 

The strength and grit that you have comes through so clearly. As well as your care and concern for others. You have a beautiful heart and a resilient spirit. You will get through this and soon, the worst days will be behind you. This will pass.

[RachelSusan]

@Dejavu

 

Hi Dejavu,

You haven't posted for a few days and I am hoping that is a good sign.  I know you also get very busy with work as well.  I just hope all is good with you.

Rachel

[RusTW]

On 3/19/2019 at 4:04 PM, Vonnegutjunky said:

I would videotape myself during windows and then when the waves came I woul watch my videos , I would tell myself things like, remember how you feel now, you are getting better, hang on and remember this time..... that’s how I would calm myself becuse I often forgot how normal I felt during windows, when I was in a wave. 

Good idea-i forget too in the depths sometimes.

[Dejavu]

@RandyJames @composter @RachelSusan @RusTW

Thank you all for checking in with me. I've been on the same dose for a little over 2 weeks - no more chopping and changing - and my friends and family tell me I have slowly but noticeably improved. My most troublesome symptom at the moment is almost constant head spinning/dizziness/visual distortion - hard to explain but its been really bad the past few days, and it sends my anxiety through the roof.  Other symptoms come and go - I'm fortunate enough to be sleeping and having less morning anxiety sometimes, but this dizziness is impossible to ignore and I've had it for 5 months now. I know everybody is suffering and I can only speak for myself, but God I'm just so very tired. 

 

I hope you are all doing well. 

[RachelSusan]

3 hours ago, Dejavu said:

My most troublesome symptom at the moment is almost constant head spinning/dizziness/visual distortion - hard to explain but its been really bad the past few days, and it sends my anxiety through the roof. 

Yes it is very hard to explain to others that haven't experienced it.  I've had all of you described and I found the visual distortion really strange and horrible.  Actually it's all horrible.  It does take a while to go away, but mine did.  I'm not sure if you have the same concerns I did, my main one being getting stuck this way. Well I am unstuck, I hope that puts you mind at ease, at least a little.  I felt I could deal with anything if someone could just tell me for how long. 

[Dejavu]

@RachelSusan, yes yes yes! That is my greatest fear. Your words exactly: "stuck this way." I'm terrified of that. And the visual distortion and dizziness always occur together and have been going on for so many months now that I've forgotten what it feels like to not have them. I don't know how much longer I can do this - and I'm only 5 months in and have not even started to taper. I'm often tempted to just CT - I'm not sure it would be any worse than what I'm suffering now - but at the end of the day I don't have the guts. So I sit still, doing nothing proactive to help myself. And day after day, nothing much changes. It seems so hopeless from where I sit right now.