12-24 months and up support group

[[...]]

Hope you are all doing OK, in pits of hell at moment, so not posting. Trying get help from GP, just be very grateful you don’t have same healthcare system as us it sucks. Love to you all 💕

 

Thinking of you Leann and sending hugs.  So sorry.

 

Hugs Leann.  Right there with you in the pits of hell.

[[Li...]]

Lisa,

I'm so sorry that you are suffering. I sure hope your stay in the hospital helps and you can get something figured out soon.

 

JBen,

I sure hope things settle down soon for you. I'm in the same place suffering badly and really haven't had a break. Hoping we turn corners soon.

 

LadyDen,

Let us know how your visit with doctor Jen goes.

 

Leann,

I'm so sorry you're still struggling I'm right there with you. Trying to hang on.

 

Today I am 29 months out and hoping for some big improvements coming up in the next month. All I can do is hope, without that what do we have.

 

Sending big hugs to all!

 

LiveLife

[[...]]

Every time I breath, I get series of electrical waves through my brain and body. Have any of you tried that or heard about it?

Hugs, Jørgen

[[Li...]]

Benzo buddies,

I am sitting in the hospital, waiting for my husband to have a surgical procedure connected to the cancer. We had to be here at 6 am. I am so stressed and didn't sleep much at all. I usually get the most of my broken sleep in the morning. I am feeling so many symptoms, I wish this would end. I have to drive my husband home when the procedure is finished. The hospital is a half an hour from our house. It isn't that far, but feels overwhelming the way I am feeling. I just want to be a good support for him as he has been for me. I'm sorry to be venting, I am sitting here waiting. Benzo bully doesn't give us a break. Hugs to all!

 

LiveLife

[[He...]]

Benzo buddies,

I am sitting in the hospital, waiting for my husband to have a surgical procedure connected to the cancer. We had to be here at 6 am. I am so stressed and didn't sleep much at all. I usually get the most of my broken sleep in the morning. I am feeling so many symptoms, I wish this would end. I have to drive my husband home when the procedure is finished. The hospital is a half an hour from our house. It isn't that far, but feels overwhelming the way I am feeling. I just want to be a good support for him as he has been for me. I'm sorry to be venting, I am sitting here waiting. Benzo bully doesn't give us a break. Hugs to all!

 

LiveLife

 

LifeLife,

 

Oh what a tough morning.  I know that horrible, sick, early morning feeling and I'm sure the stress added in is creating a perfect storm in your body.  And an added drive and the desire to be support of your husband are all piling up on you.  I understand as I've been in similar situations over the years.  I remember taking a family member to the hospital (more than once) and thinking I would NEVER survive the hours and caretaking  and that surely I felt worse than even they did (might have been right) but each time somehow I did survive and you will too, I bet.  I'm going to do a little meditation and send you good thoughts.  Hand on your heart and envision white light coming in through the top of your head.  Thinking of you and sending hugs.

 

Helen

[[La...]]

Wow everyone is lined up in the hall at the Benzo Bully principal office for spankings. Not good! We’ll time to rally around each other 

 

JBen I’m sorry to hear of your pain. You know what when I eat bacon it makes me feel worse too. I bought some a few months ago…no nitrates, no preservatives, all natural uncured. I was surprised that it did that. Just like you, at the time it was the only thing different that I ate. So about a month later my family wanted me to make some of my delicious pork ribs. Again I bought natural, organic, no antibiotics or hormones fresh pork ribs. Cooked them. They were top notch delicious and that night I was hit with a big wave. Coincidence? Nope! I tried a uncurled natural ham sandwich….same result! Apparently pork is no agreeing with me. It might be what’s happening to you. The good news is after my body threw that fit from eating it, it settled after a day or two. Now I’m very careful. I had pancakes, eggs and bacon one morning couple of weeks ago. I ate only a half a slice bacon….no problem. It’s not unheard of to become strangely sensitive to things suddenly. With time, it will go back to normal. Feel better soon my friend.

 

Leann I really hate to hear that you’re suffering still. I truly hope that you turn a corner soon. I wish I could just give you a big hug! Please hang in there and know we love you!

 

Live prayers for your hubby. I hope he will recover quickly. You were brave to be able to push through while feeling so bad. Well done lovely lady! Well done! Once you’re home you can get him settled and rest yourself to de-stress. Good thing it wasn’t a far drive. Sending you love. I’m very proud of you. And….

Happy 29 months, Live!

 

Helen that sucks to have that going on to disturb your sleep. Our sleep is a precious commodity for sure! I’m glad your still overall doing well. That’s encouraging for us to have someone we know that’s doing fairly well. Keep the light burning for us. We’re trying to come to shore to join you. Love you bunches! And thank you for your love too.

 

Jb yes all this is a daily struggle. A wait and see roller coaster ride that we didn’t buy tickets to get on. Unfortunately it has to run its course to get to the other side. I mentioned this being like a race. There are hurdles, hills and uneven ground on the way. They SUCK! Sending you feel better wishes and hope you turn a corner soon too.

 

Ok….The visit with Dr Leigh went well. She was a very attentive, polite and knowledgeable lady with great compassion. With her having gone through this, I can see how she’s that way. She reassured me that even getting hit hard again, new symptoms popping up and prolonged main vestibular symptoms still hanging around…I WILL HEAL. She had these symptoms but not as severe as mine has been ( meaning it didn’t render her bedridden and unable to ride in a car/ housebound). If it did, it wasn’t for long. She told me to continue trying to walk when my brain allows me to but don’t push it too much. It’s common to do something so simple as walking and it pays you back with waves. She said it’s probably a shift towards trying to get a better baseline. All part of healing especially when someone is as far out as I am. Of course she can’t tell me when I’ll be healed but she said she did have quite a few other people who contacted her that was just like me…only on a Zdrug who’s brain gave the same prolonged symptoms as if on a regular benzo. She referred Zdrug as “ baby benzo” with just a few of the molecules are different. I wasn’t surprised by this because I’ve been telling people all along on this forum that it IS a benzo….a baby one that hits THE SAME receptors in the brain. She wasn’t surprised that my WD/ symptoms have been some of THE SAME as if I took a regular benzo. Seeing it that way…..technically I did. Eye opening! So she’s a big fan of plant based diet to heal the gut to assist the brain in healing. She suggested for me to eat clean- a plant based diet with plenty of fruits, vegetables, little to no dairy or meats. Of course I’m already pretty much eating like this except I do eat grilled chicken often. Not everyone can handle a plant based diet but get as close as you can to eating one. The body needs fresh fruits and vegetables to heal that’s where your natural vitamins get in the body. As far as my vestibular issues all I can do is walk as much as my brain allows and wait for it to heal. Having had improvements is my brains way of telling me that it’s working hard to heal it. It’s not permanent. She said I WONT be some rare case of the one who never healed. It takes time but I will heal.

Very very encouraging!  When we finished, I felt very good and I now view this as just an unwanted but necessary guest. Ladies, kind of like having a monthly Aunt visit. Unwanted but necessary. The Aunt eventually leaves 

 

:smitten: :smitten: :smitten:

 

 

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LadyDen - thanks for sharing.

Z-drugs are benzo agonists - so same same. I have heart from many that they are even worse than ordinary benzos...

So Jenns main messages is to be on plant based diet and walk as you can.

Is her experience also that when you get a drawback - you will get a better baseline afterwards?

If so, I should feel very well after all this.

Hugs, Jørgen

[[Li...]]

Helen,

Thank you so much for your kind and understanding words. You really know what I'm going through.. It's so difficult!! But as you made it I will also. Can't wait to be looking back on all this.

 

LadyDen,

Thank you for sharing what doctor Jen had to say.  Thank you for your encouragement.

 

Hugs!

 

LiveLife

 

 

[[De...]]

Good Morning Everyone,

 

I thought I would pop in and see how everyone is doing and my heart goes out to all who are still suffering so badly  :'( 

 

Live - I am so sorry to hear of your husband's health issues.  This is a horrible stress for the both of you, one of life's worst to be sure.  Sitting and waiting at the hospital for a loved one is torture WITHOUT benzo withdrawal symptoms.  Please take deep breaths and try to at least fake the calm.  By breathing slowly and deeply you are telling your brain (via the vagus nerve) that you are safe and this calms down the sympathetic nervous system which is revved up by the stress.  It may not feel like it's working at the moment, but in my experience it is the day's cumulative stress which adds up and leaves us in a horrible state by evening.  Even a lie down without sleeping takes stress off our bodies. 

 

Stress is really the issue for all of us.  We may not think we are emotionally or psychologically stressed, but physical stress (like exercising) adds up too.  I like to think of it this way...If we've slept well we have a certain amount of resilience to our daily stresses.  If we sleep poorly or not at all this amount is much reduced.  Each day the balance is the key.  How much resilience do we have and how much are we "spending"...We have to keep the balance in the positive.  We can't overdraw our accounts.  That's when the waves hit the worst. 

 

This is where meditation helps us.  Even if you don't actually meditate hard core, lie down and breathe deeply for 10 minutes.  It will add to your "stress account balance".

 

Thinking of all of you.  I have made good progress recently.  The kittens are giving me a run for my money but all is good 

 

Bless you ALL!!!!!

 

 

[[He...]]

Deanna,

 

That's great advice you are giving to LiveLife and I totally agree. I've noticed that just resting and breathing for short snippets of time adds greatly to my reserves for coping.  I'm so glad you are doing well and enjoying the kittens! 

 

I've had 8 days in a row of feeling "mostly good" which is my longest window yet and so far today (Day 9) is going well.  I was just thinking this morning about banking rest in between activities.  I'm glad you popped by to share that wisdom. 

 

Keep on enjoying your life. It sounds like you have a wise approach to reentry. I'm trying to do the same.

 

Sincerely,

Helen

[[La...]]

LadyDen - thanks for sharing.

Z-drugs are benzo agonists - so same same. I have heart from many that they are even worse than ordinary benzos...

So Jenns main messages is to be on plant based diet and walk as you can.

Is her experience also that when you get a drawback - you will get a better baseline afterwards?

If so, I should feel very well after all this.

Hugs, Jørgen

Yes she did say that. She said it’s part of the healing process. A big push of the brain trying to return itself to normalcy. Sometimes that push is so hard that many people heal or is right at the finish line when it lifts. 

 

And I agree with you that in some ways the Zdrugs are worse. On this forum there are not many that was only on a Zdrug like me that it caused the same benzo symptoms so bad. But Dr Jenn told me that she has many clients like me that Zdrugs did this to them too….with pretty much the same symptoms I have. It’s just that they’re not on this forum. So, don’t think that whatever symptoms you have that you’re the only one. Nope! The one thing she said that stuck with me the most is….don’t think you will be the rare ONE person that won’t heal at all. It might take more time than you thought or than you wanted but you will heal for sure! While healing eat right, love well ( yourself and others), walk as much as you can and get busy doing something to stay distracted from your symptoms. They’re just symptoms ( reflection of an injury CNS that’s in the process of recovery).

[[He...]]

Lady Den,

 

Thanks for rehashing Dr. Leigh's comments.  Regarding Z Drugs, I was years out from the Xanax and only taking Lunesta and Sonata in 2017 when the severe balance and disorientation stuff kicked in so I totally believe that the Z drug symptoms can be very severe all on their own.  I had balance issues for several years and in a severe way for stretches of time. It was never as solidly consecutive as yours but  I am beginning to wonder about the prevalence of that with Z drugs.

 

Hope you have a good day dear one!

 

Helen

 

[[...]]

Thank you🙏

I took z-drugs for 5 years. I think I got interdose withdrawal quite fast, so when I took the pill in the evening it was a relief since it took away my symptoms. I just didn’t know at the time. It might be worse for the brain adjusting all the time due to the short half life time. Maybe...

I would be so happy if this bad long wave I am in, would mean major healing is coming up. I pray for that every day...

I just began to walk again today - after I got covid. So first trip to the sea.

Healing hugs, Jørgen

[[De...]]

Deanna,

 

That's great advice you are giving to LiveLife and I totally agree. I've noticed that just resting and breathing for short snippets of time adds greatly to my reserves for coping.  I'm so glad you are doing well and enjoying the kittens! 

 

I've had 8 days in a row of feeling "mostly good" which is my longest window yet and so far today (Day 9) is going well.  I was just thinking this morning about banking rest in between activities.  I'm glad you popped by to share that wisdom. 

 

Keep on enjoying your life. It sounds like you have a wise approach to reentry. I'm trying to do the same.

 

Sincerely,

Helen

 

Thanks Helen! I'm happy to hear of your good progress as well!

In terms of re-entry I have found that my mind has been willing for so long and my body/nervous system was not.  Slowly as I have been able to do more I feel like I have been reborn with a zest for life that I had no appreciation of before.  This has been a nightmare experience for sure, but I now know it will provide important context for the rest of my life.  I am so excited for the future!!!!

[[Li...]]

Deanna,

 

Thank you so much for the kind reminders. I actually do use meditation and positive self talk to get through A-day many times. But it's always nice to hear some encouraging words about it. So hoping to get through this and look back on it one day as a distant memory.  Happy to hear the kittens are keeping you busy and I'm sure it's very enjoyable. Thanks again for your input.

 

LiveLife

[[La...]]

Lady Den,

 

Thanks for rehashing Dr. Leigh's comments.  Regarding Z Drugs, I was years out from the Xanax and only taking Lunesta and Sonata in 2017 when the severe balance and disorientation stuff kicked in so I totally believe that the Z drug symptoms can be very severe all on their own.  I had balance issues for several years and in a severe way for stretches of time. It was never as solidly consecutive as yours but  I am beginning to wonder about the prevalence of that with Z drugs.

 

Hope you have a good day dear one!

 

Helen

I agree totally. I have wondered the same thing. Having this experience has really shed a light on how awful Zdrugs are. I’m 28 months and still in disbelief of what it did to me. Taking these pills are a gamble. Russian roulette for sure. You don’t know what injury they’ll do until after they’re taken. And what you said just confirms my suspicions that Zdrugs makes a direct target to the vestibular system. If you’re lucky it won’t be daily like mine is but for sure it will be consistent until you heal. I’m not envious of those who have this for a little while then it disappears. I just wish mine did that. I’m happy for them because I know how much debilitating it is everyday living life in a bed. Although I’ve always believed in my symptoms in spite of what it looks like, it was music to my ears to hear that this will leave. I’ve already had much improvement so there’s no reason not to believe that. It’s just sooooo slow! Maybe being this far out, it will speed up and finally leave. I hope yours never come back too.

Thank you my dear lovely friend 💕💕💕💕💕

[[La...]]

Thank you🙏

I took z-drugs for 5 years. I think I got interdose withdrawal quite fast, so when I took the pill in the evening it was a relief since it took away my symptoms. I just didn’t know at the time. It might be worse for the brain adjusting all the time due to the short half life time. Maybe...

I would be so happy if this bad long wave I am in, would mean major healing is coming up. I pray for that every day...

I just began to walk again today - after I got covid. So first trip to the sea.

Healing hugs, Jørgen

Wow good for you Jorgen! Enjoy the walks. Nature is healing.

I also would watch the clock every evening to take my ambien for relief. Just like you, I didn’t realize I was in WD everyday. Zdrugs are sneaky little evil things.

Happy healing ! ❤️🤗

[[La...]]

Deanna,

 

That's great advice you are giving to LiveLife and I totally agree. I've noticed that just resting and breathing for short snippets of time adds greatly to my reserves for coping.  I'm so glad you are doing well and enjoying the kittens! 

 

I've had 8 days in a row of feeling "mostly good" which is my longest window yet and so far today (Day 9) is going well.  I was just thinking this morning about banking rest in between activities.  I'm glad you popped by to share that wisdom. 

 

Keep on enjoying your life. It sounds like you have a wise approach to reentry. I'm trying to do the same.

 

Sincerely,

Helen

 

Thanks Helen! I'm happy to hear of your good progress as well!

In terms of re-entry I have found that my mind has been willing for so long and my body/nervous system was not.  Slowly as I have been able to do more I feel like I have been reborn with a zest for life that I had no appreciation of before.  This has been a nightmare experience for sure, but I now know it will provide important context for the rest of my life.  I am so excited for the future!!!!

I love this Deanna! 

 

This is how I feel too. My mind and body wants to go do things but I physically can’t. I’ll be so happy for my brain to catch up. It’s getting there.

I’m so happy for you. I can’t imagine what it’s like to see grass as if seeing it for the first time or the sky, etc. I have read that is how it feels on the other side of this. I can’t wait!

Love you bunches ❤️ Thank you for sharing this. We all needed to hear it.

[[He...]]

Hi all,

 

I'm hoping everyone is doing ok.  LiveLife, I hope your husband's surgery went well and you survived the day.  Decatur, I am thinking of you too.  GG, hoping your improvements are continuing every day!  J Ben, I know you are struggling and I'm thinking of you. 

 

LD, I agree..not jealous of others who do well getting off meds...just wanting all of us to reach the shore and join them.

 

I've had 10 good days in a row! It's my longest stretch ever by far. Today....not so great.  I woke up early with a heck of a headache but I'm going to pamper myself a bit and see how it goes.  It feels like more construction may be taking place in my brain so I'll try to be grateful.

 

I hope everyone has the best weekend possible.  Healing thoughts...

 

Helen

 

[[Li...]]

Helen,

 

Yes my husband's surgery did go well. And I did survive the day.  Thank you again for all your encouragement. It really meant a lot to me.

 

That's wonderful you had a 10 day stretch of feeling better.  That's progress. Sorry to hear that today isn't as well but hopefully as the day goes on you'll start feeling better.  Sending you big hugs!

 

LiveLife

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JordanJack,

I so much understand what you are saying about the burning brain. Mine has been going on for a long tine as well, and has been one of my worst symptoms. And now it has even bevome worse. Not to scare you, but in the last months I have had a flare up of symptoms. I surely hope abd pray it's because of healing. I don't what else it should come from other than recovering of our brains, trying to reach balance again - growing new GABA receptors or whatever it is doing. I also had a lot of blood work done lately, and all was good. On Tuesday, I am going to see another neurologist - but I don't have any hope that he will tell me something new. How can you work in this condition? In the last months, it has been nearly impossible for me.

At the moment, I have constant burning brain and headache, burning inside my body, burning skin, nerve pain and numbness in limbs, shaking inside, electric waves going through my body, amongst other things. Some would probably call it inner akathisia. When I wake up in the morning, my burning brain is unbearable. I can't do much or talk to people as it feels like my brain can't handle the input, and my symptoms explode.

Healing Hugs, Jørgen

 

Oh Jørgen, I am so sorry that you’re enduring the same. I have all of this; it’s so very difficult and painful. It seems my the symptoms have truly ramped up for me as well. Month 8,9& 10 grew more and more difficult and now that I’m in month 11, it seems even worse.

 

I never really had the crazy shaking legs and body until a few weeks ago. It’s almost like a major panic attack without the panic. It comes out of nowhere. It’s almost like a seizure; so uncontrollable. Perhaps it is an adrenaline or cortisol dump. It’s worse for me in the morning and then again in the afternoon once I am off work. It’s like chemical anxiety.  Fortunately, I work from home. I’m a programmer and the job demands are so stressful. I think the distraction has helped but it’s been so hard. The weekends seem harder for me, perhaps it ms the stress from the work week coming to me. I don’t know how I’ve been able to work other than by grace. I had no choice, as I am alone.

 

The burning nerve pain in my head and  burning brain is the absolute worst. I just don’t understand why it seems to be worse. Wheh I get up in the morning after vert little sleep of course, I can feel the blood go through my veins and it feels like hot acid; same thing if I take a nap. I am almost afraid to sleep. I only get a few hours each night. This whole journey is making me have PTSD from the anxiety of it all. My friends just think this is all anxiety; they wouid never understand unless they’ve been through it.

 

I’ve tried to ask my doc to refer me to a neurologist, but she hasn’t yet, so I will look forward to what yours says. I’m just so very sorry that we are having these horrible symptoms. It makes no sense.

I’m struggling mentally as it’s so very hard to endure for this long. To think that I would have to endure this much longer is very difficult to think about.

If I could just have a few days without the symptoms my hope would be restored.

I’m praying that our miracle and healing will come soon.

I’m sending you healing hugs! 🤗🙏💙

Jordan

 

Jordan🙏

Yes, it seems that we are sharing some symptoms. The burning acid brain is awful. I also have a giant headache so not easy to do anything. If am the slightest stressed, my burning brain and headache gets a lot worse and it feels like the pain is radiating out in my whole body - and also making my fingers stiff together with poor fine motor control. Do you experience this?

The neurologist send me to a MRI brain scan. I don't think it will show anything, but we will see. I will keep you updated.

Yes - I also dream of getting just a small windows, which could give some hope.

Healing hugs, Jørgen

[[...]]

Hi yall.  Just stopping by to read up on your lives and progress.  I am ‘ok’ this morning.  Tired but ok.  Hugs to you all.

[[Be...]]

Jb, let us know if anything shows up on your brain scan, alright?

[[...]]

I will

[[La...]]

Hi yall.  Just stopping by to read up on your lives and progress.  I am ‘ok’ this morning.  Tired but ok.  Hugs to you all.

Yay!!!!   

 

Wonderful to hear this Jben. Thank you for letting us know. Now it’s everyone’s turn to turn those corners! I’m doing ok too…not bad not good…ok