12-24 months and up support group

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Millet:  Welcome!!  So glad you posted here and I know you will find lots of support and encouragement.  At 19 months you are well on your way to complete healing.  I know it may not feel like it at the moment, but you will get there.    A lot of us are around the 24-30 month timeframe. 

 

Please know that we totally understand what you are experiencing and we would love to support you in any way we can.  LadyDen is our fearless "leader".  She is a great cheerleader with lots of wisdom. 

 

I hope you have a decent day today.  Keep reaching out! 

 

Decatur/Lisa

[[le...]]

Good afternoon.  I hope everyone is having a decent Sunday!

 

LiveLife:  I am so, so sorry you are still struggling so much!  There is certainly some deep healing going on for you even though it does not feel that way.  Please know that you are in my prayers!!!  I can't wait for the day when you post that you are feeling better! 

 

Accidental:  How are you feeling today?  Hopefully you are having a good day!  In answer to your questions, I am almost 31 months off, and I will say there are times in the last six months that I have felt worse than I did last year, but having said that, after I go through a deep wave, my baseline is always better.  This is not a linear process which makes it so difficult.

 

Leeann:  How are you doing?  Hope to hear from you soon.

 

Thinking about all my buddies today!!!

 

 

 

 

 

 

 

Thanks for asking probably don't belong on here at moment, I know Lady Den likes try keep things positive on here.  Getting horrible symptoms since stopping the unisom like severe acute. Developed extreme OCD type symptoms out blue, fear contamination that type thing. So just about given up how can it get worse after 40 plus months??? Even my hubby getting tired of me just feel I'm drifting in middle ocean with no land or rescue in sight. Just don't know what I'm doing wrong to be getting so little improvement after all these months. Wishing  everyone there a peaceful wave free day.

[[De...]]

Hello Everyone - I know I haven't posted in quite awhile.  I've been getting on with life!  I took a garden and landscape design class at my local botanical garden and I just LOVED it.  It kept me quite occupied and busy and I can say that is a blessed thing indeed.  I feel like it helped get me on a virtuous cycle upwards and no time to dwell on my "condition".  My walking has helped too, as I notice I feel better when I walk at least every other day and not so much if I slack off.  So I'm trying to keep on a good program to keep my baseline stable.

 

Do I think I'm healed?  Unfortunately I still have minor symptoms and they are manageable. But I am afraid to call myself healed or write a success story because we all know one hiccup with a medication or injury and I'll be right back in the thick of it.  So I keep plodding on and hopefully in due time I'll get my confidence back and not even look back at this nightmare.

 

I'm so sorry for all of you who are still suffering so badly.  I know what you are going through and I think the best advice I can give is hold on tight, because I really truly believe we all will get there.

 

LadyD, you mentioned whether maybe your walking could be revving up symptoms, I can say that it certainly did for me when I started walking again.  But just keep doing it, because eventually your sensitive nervous system will learn that the exercise is OK and all those awesome neurotransmitters are good for you and you'll start feeling even better.  2500 steps is such an improvement!  Congratulations!!!

 

Leann - I'm really sorry you are feeling awful again, but unisom is not benign.  I took that too for years along with the Ambien and it too impacts neurotransmitters so when you stopped it your neurochemistry has to balance out - AGAIN....and each time your brain goes through a transformation it throws a hissy fit.  It will pass....give it a bit of time. 

 

Haven't seen GG posting - I hope she is off living life again!!!

 

I may not post often, but I think about all of you everyday!  I will never forget this sisterhood cultivated here.  It is precious to me 

[[Mi...]]

Thank you everyone... still trying to know each one of you. But happy i got new friends with this group.

Lisa thank you for warm welcome and your positive outlook.

Yes ladyDen is a vibrant cheerleader as i saw her posts.

i thank God for each one of you and rest assured i will include you in my prayers. 💕💕💕

[[He...]]

Deanna,

 

How nice of you to check in!  I love that you took that class and that it was good to steer your focus away from your symptoms.  I got super duper sick with a virus and even though I have no more viral symptoms my nervous system is still trying to get back to baseline.  But I was walking every day before I got sick and agree with you that it is very valuable.  I'm slowly getting my step count back up.  When I walk, I try to not focus on getting a cardio work out but instead look at the sky and the tree tops and listen to the birds.  My focus is on my posture and my balance and my breathing.  It's really good to be able to do it.  Keep on getting better! I just hit the 16 month mark and I think I'm a little behind you?

 

Millet,

 

Welcome! So glad you are in our midst.  We'll get through this journey. 

 

 

[[...]]

Hi all.  Just catching up on all your posts.  Cant really write a lot as I am full of symptoms.  Thinking of all of you.  Hugs.

[[De...]]

Deanna,

 

How nice of you to check in!  I love that you took that class and that it was good to steer your focus away from your symptoms.  I got super duper sick with a virus and even though I have no more viral symptoms my nervous system is still trying to get back to baseline.  But I was walking every day before I got sick and agree with you that it is very valuable.  I'm slowly getting my step count back up.  When I walk, I try to not focus on getting a cardio work out but instead look at the sky and the tree tops and listen to the birds.  My focus is on my posture and my balance and my breathing.  It's really good to be able to do it.  Keep on getting better! I just hit the 16 month mark and I think I'm a little behind you?

 

Millet,

 

Welcome! So glad you are in our midst.  We'll get through this journey.

 

Helen!  I had quite a wave following COVID this past June.  It lasted longer than most of my waves, so hang in there!  Two steps forward, one step back...BUT after that I felt even better.  It's as if the trauma of the virus on the immune system helped my nervous system learn better what it needs to be doing.

 

Yes when I walk I more of less meditate with nature.  Best thing ever :-)  Keep up the good work!

[[La...]]

Happy morning hugs to all of you Yearlings! Firstly d like to welcome our newest friend Millet…

Welcome Millet!  Were happy to have you join us yearlings. May you reap the benefits of the love and unrelenting support here. It is a comfort to be in a group that shares common understanding. I’m sorry to hear of your struggles although as we all know, it’s part of the roller coaster ride we’re on. I’d also want to say well done getting this far!  And thank you, Lisa and everyone for their sweet comments about me. I’m not sharing that alone…you ALL are jewels of this thread too. Together we shine and climbing out of this dense forest!

 

Accidental I’m thrilled to hear you’re feeling better and slept well. Yay!!! Benzo Bully gets proven as a big fat liar if we just let time do it’s thing  I’m soooooo happy for you!

 

Lisa you’re such a dear. You’re so right about after these stormy days/ weeks/ months we get a better baseline for the reward. And thank God! Do you work? I have a huge admiration for those who work the whole time they’re recovering. I honestly don’t see how they manage. Wow!

 

JBen I’m sorry you’re struggling again. Hang in there because you know by now that it will circle back to better days again. I’m thinking of you  and in the struggle too. Wouldn’t we all just love to wake up miraculously healed overnight? You know that does happen to a few. Sending you my love! ❤️🙏

 

Deanna it’s wonderful to hear you’ve been living your new life and spreading your gardening wings. I always knew you would heal nicely…all of us will if we just hang in there allowing time to be our best friend. What an absolute joy to have met you and have been beautiful friends from our beginning of this. Look at us now how far we’ve come! You’re more healed than me but we are both well on our way. I love the encouragement you gave. And you’re right that this does do it’s thing and when the time comes, we began to live better lives than we had before all this. I’m sure your residual symptoms will also fade away. You’ll write your success story very soon. I can’t wait! And I’m right behind you in my recovery…a little slower than yours but definitely coming along. Thank you for your love and yes I’m enjoying walking that much everyday. My plan is to increase by about 200-300 every two weeks. When I get to 3000 I’m going to start walking the parking lot. I’m so blessed to be able to do this now. Love to you ❤️💗🌹

 

Pashu thank you. I wish you a good week too. And yes my eye is on that prize. I can’t wait to be done with this. I have a longggggg list of things I want to go do again. And I’ll have a very bruised arms because I’ll be pinching myself very often to make sure I’m not dreaming! 😁😂 Love to you ❤️

 

Helen I know you’re getting hit right now. I wanted to send the virtual hug squad 🤗🤗🤗🤗🤗 your way. I’m looking for the window fairy to give her a list of us to come visit. Please know I’m thinking of you. I hope you get relief soon. My past couple of days was rough too. Love you bunches ❤️💗❤️🌹

 

Leann I’m happy to see you are doing ok in spite of your symptoms that’s still hanging around. How’s your country adjusting to The new king? Things settled down? Do you still go to your classes? Sending you big hug and love ❤️ 🌹

 

As for me my morning dread wasn’t too bad this morning but I’m starting my morning wave. My days definitely have a pattern. That’s a good thing. What phase would you all say you’re in? The 4 phases of WD? I’d say I’m in between 2 and 3. Mostly 2 still. I think 2 is the longest phase. I’ve been in this for well over a year….windows and waves repeat repeat. But since turning 24 months I’ve noticed new sensitivities especially to sounds or stressful things. They immediately send me in a big wave. Well may you all enjoy the week. God is the mighty physician! 🙏🌹❤️

 

[[He...]]

Deanna,

 

How nice of you to check in!  I love that you took that class and that it was good to steer your focus away from your symptoms.  I got super duper sick with a virus and even though I have no more viral symptoms my nervous system is still trying to get back to baseline.  But I was walking every day before I got sick and agree with you that it is very valuable.  I'm slowly getting my step count back up.  When I walk, I try to not focus on getting a cardio work out but instead look at the sky and the tree tops and listen to the birds.  My focus is on my posture and my balance and my breathing.  It's really good to be able to do it.  Keep on getting better! I just hit the 16 month mark and I think I'm a little behind you?

 

Millet,

 

Welcome! So glad you are in our midst.  We'll get through this journey.

 

Helen!  I had quite a wave following COVID this past June.  It lasted longer than most of my waves, so hang in there!  Two steps forward, one step back...BUT after that I felt even better.  It's as if the trauma of the virus on the immune system helped my nervous system learn better what it needs to be doing.

 

Yes when I walk I more of less meditate with nature.  Best thing ever :-)  Keep up the good work!

 

Thank you Deanna!! I feel very encouraged when I read your words.  I'm sorry you had Covid.  We had an awful bug but repeatedly tested negative for Covid but I think if it wasn't covid it was nearly as bad.  I love that your nervous system improved after your recovered.  This thread is full of hope today.  I'm glad you enjoy your nature walks too. It really is the best thing ever.

[[He...]]

Lady Den,

 

Thank you so much for your encouraging and sweet replies. I'm sorry you have had a rough couple of days too. I was decent yesterday. Today is tolerable...just the aforementioned stomach ache mostly.  I am so proud of your attitude about the walking. You're getting there and you have a reasonable and well thought out plan for getting it to happen.  Keep it up!!

 

J Ben,

 

I'm so very sorry you don't feel well. I understand.  It's so nasty and we are all holding you close here.

 

Love,

Helen

[[Li...]]

I want to give a big warm welcome to Millet!  So happy to have you with us.

 

Sending a big hello to all my beautiful buddies

 

I think I'm right there with JBen.  I tried to read everyone's post to catch up, but don't feel up to writing much at all. The symptoms have really been getting me down.  That's putting it mildly. I want you to know that I'm thinking of everyone and sending warm love and healing hugs your way.

 

LiveLife

[[He...]]

Live Life,

 

You don't have to write anything. I'm sorry you are still "in it". I'm not at my best either (just had a all night migraine which hasn't happened in ages) so I get it.  Glad to know you are still there reading though.  Onward...

 

Helen

 

[[La...]]

I want to give a big warm welcome to Millet!  So happy to have you with us.

 

Sending a big hello to all my beautiful buddies

 

I think I'm right there with JBen.  I tried to read everyone's post to catch up, but don't feel up to writing much at all. The symptoms have really been getting me down.  That's putting it mildly. I want you to know that I'm thinking of everyone and sending warm love and healing hugs your way.

 

LiveLife

We ❤️You Live! We understand how you feel. It’s ok to do what you need to do for you. Just know we all are thinking of you and cheering you on to come to shore again. 🌹🙏

[[La...]]

Thank you Helen so glad you’re feeling better but the stomach trouble has got to go! I also had tummy upset yesterday off and on but felt better too….not good but better. We’re grateful for what we get, right? Yesterday I did 2700 steps. Today I’m going to match that starting when this morning wave ends. May your day is better than yesterday. I’ll be thinking of all of you when I go outside for my walks during the day. As you said Helen, I also look at the trees, birds and grass….it’s a good distraction to help ignore being unbalanced.

 

❤️LOVE to all❤️

[[...]]

Dear All

I am really in a bad wave in the last months, after I entered my second year. My main symptom is burning brain and it feels like my whole CNS is burning. I also got a giant headache, GI symptoms. I am bedbound most of the time with fatigue. My symptoms are horrible in the mornings.

Are there others in here, who can recognise all this?

Hugs, Jørgen

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I was CT'd from zopiclone, had terrible experience with sertraline. I feel my CNS is totally destroyed, unbearable mental symptoms, think I should be in a psych ward. Just stopped unisom getting awful withdrawl symptoms from that. I actually felt better last year, Although my symptoms are mental, yes I totally know how you feel. Out of interest why did you CT both drugs? I was fine on zopiclone living normal life , but new GP forced me to go CT. Seems zopiclone & SSRI pretty lethal combination fact we are both suffering badly,

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Jb yes I have the morning dread as well. Every morning. Some mornings are better than others. It’s a wait and see how bad it is every morning. Usually if my night wave is bad then my morning dread is also bad. They seem to go together. Maybe the night wave is carried over to my mornings. Anyway that’s what it appears to be doing. Currently since turning 26 months my dread has gotten better slowly over time. My morning dread started around 18 months if my memory serves me right. From there it’s just been very slow to improve just like all my other symptoms. I have had a few mornings every now and then where I woke up almost normal. Those mornings are a shocker and occurred out of the blue….and oh so wonderful! About an hour and a half later I get hit with my usual first wave of the day. Those are the mornings I hold on to. They let me know that my brain is in the process of getting it right. The morning dread ( from what I’ve read and it makes sense) is from morning cortisol that floods the body each day. Those levels gradually decline until night time which is why most people going through this get evening windows. I get evening windows too. Our brains are medically injured so the way it handles hormones of the body is out of whack until we heal. What I do each morning is distract myself from the dread by reading, playing a simple online game or just hang out here on BB until it passes which is about 1 1/2 - 2 hours. I get a short window around 10- 10:30 that’s when I make my breakfast. With time the ugly mornings will get better. There’s no telling how long they will stay around. Everyone is different. I used to have the dread when I first jumped for about 6 months but it was mild then it went away until about 18 months. When it came back it was more intense but different. So here I am still with it. Just like all the other symptoms you just try to find something that helps to ignore it. Because of your timeframe, I’m not surprised that you are feeling all kinds of things. It’s very common. I’m sure you’re probably tired of hearing me say that….but it is.

Hope you try to enjoy what you can today. Calm as possible and distract all day.

[[...]]

LadyDen,

I will never get tired of hearing that it is normal, what I am experiencing. It's the only comfort I have - to hear that it is normal.

I am not sure about the morning cortisol. At the moment it takes me a long time to get out of bed - sometimes until noon - and it is still bad during the day and evenings. In the beginning, I also got evening windows, but I don't get them anymore. My last window, which lasted an evening was two months ago. And the one before that, I don't know. I maybe have had two or three evening windows this year...

[[La...]]

Yes the window fairy must be shy with some people. But just hang in there. She’ll visit you again soon. As time goes on this does make us question all kinds of things including if this is still the brain trying to find homeostasis. But unfortunately in majority of us, it is. This isn’t linear. It gets better than bad then better then sometimes feels worse than acute etc etc etc. a true roller coaster…..benzo bully is unreal and cruel like that. There’s people, including me, that felt much better for a few months and thought we were at the end . Then out of the blue got slammed back to feeling worse. As I said….cruel joke!

Hang in there. One day at a time. 

[[le...]]

Thank you all you lovely people on here for your support. I am thinking trying gets some diazapam or lorezapam just try to stabilise then do proper wean off.  After this latest horrendous episode, after 43 months of no improvement or Windows, nothing I've tried makes a difference. Think my brain is so damaged needs something more than just 'waiting it out ' to recover. Will see if GP's will take pity. If I had improvement or symptoms lessened would wait it out, but this year I have felt worse than ever, so time isn't healing me. Just need a day where I actually feel at peace and not constantly in fear. Thank you again for all your support. Any newbies on here I am an extreme case, being forced to CT a drug I very happy on then given meds had severe adverse affect has caused this, most will recover long before me, and will get Windows and improvement in symptoms. Doubt will be posting anymore but thank you for trying to help.

[[La...]]

Leann I’m sorry to hear this. I hope you can get some relief. I wish you the best and please take my love with you. I will miss you.

 

:smitten:

[[La...]]

Good morning everyone. I’m not doing well this morning since last night. I’m having inner vibrations, pulsating, very sensitive to sounds especially booming/bass sounds which is causing me anxiety, upset stomach, my tinnitus is louder, I even hear a sound that sounds like a truck engine humming as if it’s been cranked and sitting idle….that’s the best way I can describe it. Those of you who has dealt with this please tell me what helped you.

 

Last night my upstairs neighbors decided to play music right before bedtime. As soon as I heard the bass I immediately started anxiety. The anxiety lasted all night and still this morning. Their music wasn’t very loud but the apartment walls are apparently thin. The bass went all through me. It did help to put on earplugs and headphones to drown most of it out. It was so upsetting because I had a decent day most of yesterday until that happened. They recently moved in maybe 2 months ago. Usually they’re quiet and all I hear are their walking and a few bumps every now and then. I have not met them yet. I think they’re a younger couple. I’m considering meeting them and explain to them nicely that I have a brain injury and very sensitive to music. Please does anyone have any suggestions on this?

I’m a little nervous about it because I don’t know if they’ll be jerks about it and increase the music on purpose…unfortunately some people are that way. Then that would make things much worse for me. Or am I overthinking this and should just introduce myself and explain my situation? I’d appreciate any comments from you all.

Love and hugs 🤗❤️

[[de...]]

Leeann:  I am so sorry you are struggling.  We will miss you, but I understand.    Hopefully things will level out for you soon.  Since you are unable to get the Diazepam, will you try something else?  I don't really understand how it works over the pond, but if we go to the doctor here and they believe it is necessary, they will write a prescription.    Do you have a regular primary care doctor that you see for your annual physical?  If so, what does he/she say about this situation?

 

Anyway, all the best to you!!!

 

Lisa

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Leeann:  I read your post and now I have more questions!!!  Hope you don't mind.  I am just trying to get a timeline on when and what you have taken.  You said you took diazepam when your husband was I'll.  How long ago was that?  How many days did you take it?  That could explain what is going on.  You cannot take a benzo during this process.  It "resets" your brain as if you were starting withdrawal over.  That is a very simplistic way of putting it.  You have to abstain from benzos and alcohol completely!!  Not only does it reset your brain, but it also adds the kindling effect - each subsequent withdrawal is harder that the one before.    I am sure you have read all this before, but I just wanted to remind you.  You brain needs rest from all substances in order to heal.  Also, are there other things you might be taking that are effecting you left CNS?  As far as the AD, yes they can be just as hard to get off of as a benzo, but they also can be very helpful.  I am in no way recommending you take an AD, but some people have found them beneficial.  ADs actually make you feel terrible when you first start taking them.  You can feel more anxious the first couple of weeks.  This is all just for your info!  Once again, I am not recommending that you, or anyone else, take an AD!! 

 

Bottom line - I hope you can get to a place where this is more manageable.  I am not sure what that looks like for you, but I know it is possible.  Most of us on this thread are very uncomfortable a good bit of the time, but we have managed to live one day at a time and to try to focus on some of the good things that have come from this experience.  Suffering is hard work!!!  Suffering is part of life.  This suffering is especially hard because we didn't understand the damage these drugs were doing to our brains until we decided to stop taking them. 

 

 

[[di...]]

Hi LadyDen 

 

I don't know if you will remember me but I wanted to check in and say thankyou because you were so encouraging at a critical moment in my recovery... in my life, actually. I'm 2 years and 3 months almost since my last dose. I still have some relatively minor symptoms and plenty of work to do rebuilding my life. These days I write quite prolifically - mainly poetry and some comedy. I remember being nervous about revealing this side of my character even to an Internet person across the other side of the world. But you were really nice about it and really encouraging. It helped this repressed dude to come out of his shell. It helped a lot, so thanks! 

 

Sorry to see that you are still experiencing a profound level of negative symptoms, although I am not entirely surprised given how severe they were when we were talking, perhaps 2.5 years ago. I can see that you are able to do some walking though and it makes me happy that there is tangible progress.

 

Take care x