Welcome to the Long Hauler's Group

[[...]]

Nice to see a group for long haulers. 

Thanks for making the group, Nathan. 

 

Cheers,

 

Fonz

[[La...]]

Just popping in to say hello and hope everyone is doing better or maybe even healed finally. I’m now 39 months and doing fine most days. I thought I’d be done with this by now but nope….most of my waves are now just annoyances. I get a rougher wave day about once a week. It usually last a day or two…then repeat. It feels like I’m at a standstill. Not worse but not better. I’m told this is common at the end? Anyone experienced this? 
Also my driving is at a standstill as well. Can’t drive far and can’t drive for longer than a few minutes. Some days, I can’t drive at all so I just go sit in the car boaty or not. But, I’m glad I’m now able to drive at all. I’m just so ready to actually go somewhere after waiting SO long! Any tips I’d be grateful for. 
love and hugs…Lady 🌹

[[de...]]

@[La...]  So happy to get an update from you!!!  I have missed you.   I am pretty much in the same boat  at 42 months out.  Thought I would be done with this, but I still have a couple of rough days a week, then the rest of the days of more tolerable.  Rinse, repeat.     I am encouraged though; feel like I can see the light at the end of the tunnel.   

 

[[Mi...]]

After five years post-benzo (after a two and a half year, difficult taper) I thought  I was seeing improvement. Then I got covid (I had all my shots, which triggered a stroke. Now my benzo withdrawal sx are back at square one, plus the stroke sx of right-side deficits, balance problems and weakness. I am 74 years old and basically at invalid . My good husband takes care of me, but this is  hell. My poor brain is fried.

Miranda Jane

[[Be...]]

MIranda, sorry to hear about your stroke. What other symptoms do you have?  I'm asking because I think I've had a stroke.

[[Si...]]

Thanks for this. Just had an operation and skin burning has come back.

[[Tr...]]

 

I haven't been logged in since our blogs disappeared. But now I found this. Almost nine years, and I'm sicker than ever. But I read all your

posts.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Edited October 3, 2023 by [Tr...]

[[La...]]

On 29/09/2023 at 14:11, [[d...] said:

@[La...]  So happy to get an update from you!!!  I have missed you.   I am pretty much in the same boat  at 42 months out.  Thought I would be done with this, but I still have a couple of rough days a week, then the rest of the days of more tolerable.  Rinse, repeat.     I am encouraged though; feel like I can see the light at the end of the tunnel.   

Great to see you as well. Big old teddy bear hug to you! Thanks for the reply. Yes it’s frustrating. I guess this is what it’s like at the end. And you’re right that at least we can see the light at the end of this very long tunnel. Congratulations on 42 months my dear, wow! ❤️👏👍🏼

[[de...]]

@[La...]  Don't be a stranger!  We need your positivity and light around here!!!

[[La...]]

Sending hugs to you all. Wrists locked! 🤝 We’ve been waiting and watching for a long time. It will be worth it when we can close this terrible chapter of our lives. So I’m willing to wait a little bit longer. I’m standing at the finish line so close to bust through that ribbon and get this race over! No way I’m going to just sit on the ground and give up now! Nope, not today! Have faith.

[[La...]]

4 minutes ago, [[d...] said:

@[La...]  Don't be a stranger!  We need your positivity and light around here!!!

Yes I appreciate that. I’ve been quite busy with wedding plans, my first new grandson, trying to increase my walking and driving., etc . And especially enjoying things I used to again. Even with my annoying waves, I can for the most part, push through them now. They push back! 🤨😤 But I’m trying to keep my tight schedule everyday because after being bedridden for so long, my endurance needed much work. I’m going slow gentle but steady. But, that driving/ riding in the car….it’s a big challenge! Thank you for your love. I’ll try to come more often. 

[[La...]]

On 01/10/2023 at 22:42, [[S...] said:

Thanks for this. Just had an operation and skin burning has come back.

Yes I’ve heard of this happening after a procedure even after being nearly healed. But I also heard it’s milder and temporary. Hang in there! 

[[He...]]

Hello all I'm so glad to have found this group. This is year 7 for me and I'm finding that knowing this is BIND and not protracted withdrawal has helped me immensely in coping. Looking forward to getting to know ya'll. 

[[La...]]

On 04/10/2023 at 08:48, [[H...] said:

Hello all I'm so glad to have found this group. This is year 7 for me and I'm finding that knowing this is BIND and not protracted withdrawal has helped me immensely in coping. Looking forward to getting to know ya'll. 

Welcome HM! Glad to have you join us. I’m not here much but just wanted to welcome you. This is a very supportive loving friendly group. I hope you get the support you need here. Wow 7 years is a long time. You are a warrior! 

[[de...]]

@[He...]  Welcome!   So glad you are here!   As @[La...] said you will find lots of support her for your journey!     Would love to know more about your journey?     How long has it been since you took your last benzo?    How have you been feeling?

[[La...]]

This thread is so quiet…I pray it’s because the buddies are feeling better. Thinking of you all whether you are or not. Big hugs! Wrist locked! 🤝🤗

Edited October 12, 2023 by [La...]
Misspelled word

[[de...]]

@[La...] Hey there!  I think it is quiet because our friends don't know how to find us or they have never logged into the new site.  Anyway, Hope you have had a good day!!!

[[La...]]

Hey Decatur yes I think you’re right. I really miss everyone and to be honest, the old setup too. I find myself wondering about all our friends and how they’re doing. I just pray they’re doing well and making progress. I guess we were just so used to our old setup. Now, I do have some things about this one that I love. I know this just has to grow on us. Hopefully in time, the traffic here will pick up and buddies start finding each other. But, I’m glad you’re here. Sending you big hugs and hope you’re headed back to feeling well. Thanks for replying you sweet buttercup! 🤗❤️🤝

wrists locked 

[[de...]]

@[La...]  Good afternoon!      It is always so good to read your posts.   Always encouraging and upbeat.  How are you doing these days?   Are you able to drive a little bit?   

I am struggling today; I will be 43 months tomorrow and I just can't believe I am still symptomatic.   

I too miss our buddies!!!  

[[La...]]

On 14/10/2023 at 17:29, [[d...] said:

@[La...]  Good afternoon!      It is always so good to read your posts.   Always encouraging and upbeat.  How are you doing these days?   Are you able to drive a little bit?   

I am struggling today; I will be 43 months tomorrow and I just can't believe I am still symptomatic.   

I too miss our buddies!!!  

Hey Sweetie! Stop always good to read your posts too. How am I ? Not where I’d hoped to be at 40 months ( tomorrow YAY!) BUT, I’m counting my blessing anyway. By grace and mercy in time, I’m much better than last year at this time the year! To answer your other question on driving…yes I’m driving a little bit Literally a LITTLE. So much so that I don’t know if I should be calling it driving because I don’t go anywhere but a couple of parking spots over or across then back to my parking spot. It’s pitiful LOL. It seems I’m stuck in doing that every few days. Very frustrating! I’m wondering if I should force it a bit further? What I’m afraid of is this…. 1. I will push too much and be back to bedridden. 2. Put myself in a bad wave. 3. Get too far and be stuck with not being able to drive back ( with nobody to res ur me because I’m home alone most of the day). Any suggestions would be appreciated! 
Here’s something funny…I have driven further a couple of months ago( to my mailbox which is 2 buildings over after turning a corner from the first building. Also drove the other direction 2 buildings over and back.) I took pictures of myself in the car at those locations. I look at them now and can’t believe it! But, I have not been able to do that again since doing that twice. I don’t know why! I thought when I did it, “ finally I have a breakthrough and I’ll be driving more now and finally go somewhere “. I want to go to the dollar store so badly. It’s 2 minutes away. Few seconds of driving, I have to park and go back in the house because of head symptoms. I don’t understand why. So I’m trying to figure out if I should ignore them and keep driving or listen to them and go lay down ( which is what I do).

Thanks for asking. Congratulations on 43 months! I’m so proud of you! Well done! We will not give up! We must be having that final “ go rounds” before we finish healing. As far out as we are, this is common. If you had to say a percentage of how healed you are, what is yours? I’d say I’m about 75-80%. What’s your waves patterns? Do you get situational waves too?

[[Be...]]

LadyDen, I just push myself and do what I need to do.  If you want to go to the Dollar Store, just go.  I go to stores when I need something and it does work out.   What head symptoms do you get?  

[[Ka...]]

On 26/08/2023 at 23:30, [[B...] said:

Glad to hear from you again too, Nathan.  I'm not doing so well.  These BIND symptoms are doing a number on me, but I do the best I can each day.  I was able to go and get my hair cut yesterday which was a miracle.  BIND is Benzodiazepine-Induced Neurological Dysfunction for anyone who doesn't know.  It's gaining widespread media coverage lately since a research article has been written about it. 

Hi Becks I know this was a few months ago. You mentioned you were able to get yourself a haircut.

One of my first public panic attacks (I believe during unknowing withdrawal!) was in a salon chair. I thought I was going to faint. It was horrible. I was in a crisis, and had to call a family member to get me and go home.  It may have been around September.  I went back and finished the salon visit. But it took alot out of me. The greedy owner charged me an outrageous amount and the service was not even done by the way. On the day of the panic attack🫤 I drank electrolyte water. put my legs up, took a small amount and rode it out. it was horrible

[[Ka...]]

Just now, [[K...] said:

Hi Becks I know this was a few months ago. You mentioned you were able to get yourself a haircut.

One of my first public panic attacks (I believe during unknowing withdrawal!) was in a salon chair. I thought I was going to faint. It was horrible. I was in a crisis, and had to call a family member to get me and go home.  It may have been around September.  I went back and finished the salon visit. But it took alot out of me. The greedy owner charged me an outrageous amount and the service was not even done by the way. On the day of the panic attack🫤 I drank electrolyte water. put my legs up, took a small amount and rode it out. it was horrible

Oops I forgot to mention you in case you want to read this @[Be...]

[[Ka...]]

On 19/10/2023 at 16:33, [[L...] said:

Hey Sweetie! Stop always good to read your posts too. How am I ? Not where I’d hoped to be at 40 months ( tomorrow YAY!) BUT, I’m counting my blessing anyway. By grace and mercy in time, I’m much better than last year at this time the year! To answer your other question on driving…yes I’m driving a little bit Literally a LITTLE. So much so that I don’t know if I should be calling it driving because I don’t go anywhere but a couple of parking spots over or across then back to my parking spot. It’s pitiful LOL. It seems I’m stuck in doing that every few days. Very frustrating! I’m wondering if I should force it a bit further? What I’m afraid of is this…. 1. I will push too much and be back to bedridden. 2. Put myself in a bad wave. 3. Get too far and be stuck with not being able to drive back ( with nobody to res ur me because I’m home alone most of the day). Any suggestions would be appreciated! 
Here’s something funny…I have driven further a couple of months ago( to my mailbox which is 2 buildings over after turning a corner from the first building. Also drove the other direction 2 buildings over and back.) I took pictures of myself in the car at those locations. I look at them now and can’t believe it! But, I have not been able to do that again since doing that twice. I don’t know why! I thought when I did it, “ finally I have a breakthrough and I’ll be driving more now and finally go somewhere “. I want to go to the dollar store so badly. It’s 2 minutes away. Few seconds of driving, I have to park and go back in the house because of head symptoms. I don’t understand why. So I’m trying to figure out if I should ignore them and keep driving or listen to them and go lay down ( which is what I do).

Thanks for asking. Congratulations on 43 months! I’m so proud of you! Well done! We will not give up! We must be having that final “ go rounds” before we finish healing. As far out as we are, this is common. If you had to say a percentage of how healed you are, what is yours? I’d say I’m about 75-80%. What’s your waves patterns? Do you get situational waves too?

Hi @[La...] Thanks for sharing your story as a long hauler. I had to give up driving overall because of this. I even went to a phobia therapist thats how little I understood about withdrawal! This was written some time back, has it changed for you? also

How did you first come to know you had difficulty driving? Thanks I really dont know anyone in this boat and am new here, just not new to withdrawal protracted and otherwise!

[[Ka...]]

On 29/09/2023 at 20:03, [[M...] said:

After five years post-benzo (after a two and a half year, difficult taper) I thought  I was seeing improvement. Then I got covid (I had all my shots, which triggered a stroke. Now my benzo withdrawal sx are back at square one, plus the stroke sx of right-side deficits, balance problems and weakness. I am 74 years old and basically at invalid . My good husband takes care of me, but this is  hell. My poor brain is fried.

Miranda Jane

Im so sorry to read that Miranda, I will pray over it <3