12-24 months and up support group

[[La...]]

Jb I certainly want to know what it shows. Hugs 🤗

[[La...]]

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

Those headaches are so mean! I hope it goes away quick! I hate them so much. I’m sorry Twin

 

[[Ul...]]

I'm a year and a half off!! 27 years of usage including a killer 5+ year taper. There is hope . There's a good life out there, too. My best to all!!

[[jo...]]

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 Jørgen,

I’m just so sorry that we are struggling so greatly with the burning. Your symptoms are just like mine.

I have it all! I’m also having extreme shaking throughout my body as if I’m having a seizure or something. My legs shake so much. I guess it’s adrenaline, it’s so scary. I get the motor control issue too and jerks in my hand and fingers.

 

Truly this past week and today I feel so much worse. The acid burning brain and shoulders and legs feel like a blow torch being held against my body. I can’t escape the pain. It makes me very thirsty and almost nauseous from the pain. How do you cope?

 

I’m so scared that I feel like I’m getting worse and won’t recover from this. It’s been 11 months, everyday burning. I’m not sure how I’m going to get through it. If I could have just one day or a small window it would bring me hope. The burning acid in my veins rages through my body worse in the mornings, most especially my cranial nerves.

 

I’m trying to be mentally strong, but the anxiety is overwhelming because of the pain.

I just don’t understand why we have the burning. Did your neurologist provide a reason for the burning? I pray we get answers and relief soon.

I’m so very sorry. It’s pure torture, it really is.

 

I’m sending you healing love and strength.

Jordan 💙🙏🤗❤️‍🩹

[[jo...]]

Hey there !  Just wanted to give y'all an update on my situation!  Thanks so much for your thoughts.  I am at Vanderbilt Hospital which is where my PCP is.  They do not give benzos for anxiety, but they are going to put me on a different anti-depressant.  I have been on a couple of different anti-depressants over the last 40 years, and it seems like it might be time for a tune up.  There is a psychiatrist here who is an expert on benzo withdrawal.  I am going to ask to meet with him.  I am beginning to wonder if a lot of my benzo symptoms are related to my anti depressant not working.  I was on them initially for panic disorder! I will keep y'all posted!  It never hurts to get things checked out in case a symptom is not benzo related.

 

Lisa

 

Hi Lisa,

I’m so glad that you are meeting with the good doctors at Vanderbilt. I am close to there.

Can you let me know the name of the Benzo wise psychiatrist? I would love to speak with a Benzo wise doctor. It seems that my docs know very little. I’ve suffered with burning brain and body for so long and they have no answers. I was also on AD for a while. I then tapered off and was given the Xanax 8 months later which then injured my CNS.  I’m in month 11 since detox and suffering so greatly. I think it’s a combo of the Benzo WD and AD protracted WD. I’m wondering if a small dose AD might help me.

I pray you are feeling better and that our healing will come.

Bless you. ❤️‍🩹

[[Be...]]

JJ, thanks for your kind words.  When I was 11 months off, I was in a lot of pain too.  It'll go away and you'll feel better soon.

[[de...]]

Hey there!  I just wanted to touch base!  I am still at the Vanderbilt Hospital!  Feeling better and have learned so much! It turns out that some of the symptoms I attributed to benzo withdrawal are actually a return of my generalized anxiety/panic disorder.  I have been on an antidepressant for years for this condition, but evidently the dose I am currently taking is not therapeutic.  They have doubled my dose and my anxiety has already calmed down.  Also, I have met with a benzo psychiatrist who is going to refer me to a benzo specialist in Nashville.  They are very aware at Vandy of the dangers of benzos and don't really prescribe them. 

 

Anyway, I will post more later when I get back home.  I am so glad I made the decision to come!!!

 

Lisa

[[jo...]]

Hey there!  I just wanted to touch base!  I am still at the Vanderbilt Hospital!  Feeling better and have learned so much! It turns out that some of the symptoms I attributed to benzo withdrawal are actually a return of my generalized anxiety/panic disorder.  I have been on an antidepressant for years for this condition, but evidently the dose I am currently taking is not therapeutic.  They have doubled my dose and my anxiety has already calmed down.  Also, I have met with a benzo psychiatrist who is going to refer me to a benzo specialist in Nashville.  They are very aware at Vandy of the dangers of benzos and don't really prescribe them. 

 

Anyway, I will post more later when I get back home.  I am so glad I made the decision to come!!!

 

Lisa

 

Hi Lisa,

This is good news. Can you let me know the name of the Benzo specialist in Nashville?

I am close to there, and perhaps they can help me too.

You are on your way to healing! Bless you! 🙏❤️‍🩹

[[jo...]]

JJ, thanks for your kind words.  When I was 11 months off, I was in a lot of pain too.  It'll go away and you'll feel better soon.

 

Hi Becks,

Thank you so much. I’m so sorry you had to endure the same. I pray my healing will come as you expressed. The burning pain is relentless. Thank you for your encouraging words. 💕

[[Be...]]

It's good more hospitals are realizing how dangerous benzo's are.

[[le...]]

Hey there!  I just wanted to touch base!  I am still at the Vanderbilt Hospital!  Feeling better and have learned so much! It turns out that some of the symptoms I attributed to benzo withdrawal are actually a return of my generalized anxiety/panic disorder.  I have been on an antidepressant for years for this condition, but evidently the dose I am currently taking is not therapeutic.  They have doubled my dose and my anxiety has already calmed down.  Also, I have met with a benzo psychiatrist who is going to refer me to a benzo specialist in Nashville.  They are very aware at Vandy of the dangers of benzos and don't really prescribe them. 

 

Anyway, I will post more later when I get back home.  I am so glad I made the decision to come!!!

 

Lisa

 

 

 

 

 

 

Which anti depressant are you on, glad things improving for you. Benzo specialists don’t exist over here, does he take e mails, You just get dismissed here, provision for anyone with mental health problems virtually non existent in NHS.

[[jo...]]

Hi all my warriors,

I’ve been away from BB a few days, having so much anxiety and pain.

It seems the burning is so ramped up. The burning cranial nerves is too much to bear.

 

My shoulders and lower legs feel like acid in my veins. I have such shaking in my body almost like a seizure. I get very little sleep. I force myself to eat. No appetite. It all is so much worse than 6 months ago.  How is it possible to still be this bad off at 11 months? I’m so discouraged; it’s so bad ya’ll. What is wrong with me?

 

If I could have but one day of relief. I’m so afraid that this is not improving or perhaps permanent. I’m desperate for relief. The pain just takes my breath away with the torment. I need a miracle, really. I pray the Lord continues to give me strength.

 

Jørgen,

I’m right there with you waking the same journey of the burning nerve pain. It’s truly the worst. I pray we heal soon my friend. I’m so sorry that we seem to be one of the unlucky ones with this horrific symptom. I don’t know how the human body can take such pain. You are so strong! I pray our turning corner comes soon.

 

LadyDen,

I’m so happy you had a good session with Dr. Jen and that you were encouraged by her wisdom.

I truly hope that we all do heal. You have great wisdom as well and have such wonderful insights about this journey. Your encouragement means so much to us.

 

Helen,

I’m so glad you enjoyed the beach and I pray that headache has lifted for you now. It’s so lovely that you are getting windows.  I pray the final one comes for you soon.

 

LiveLife,

I’m thinking of you and praying for your husband and the care of his surgery. I know it must be so difficult as you’ve been so very strong. What a precious couple you are to support each other so beautifully.  I pray the symptoms and fear lift for you and that peace and healing wouid enfold you.

 

JBen,

I’m glad you are able to hold off on the root canal to allow some time for the symptoms to settle down.

I’ve been pretty sore since having the stitches out from my tooth extraction; I wish I could have waited too. You will get through it just fine though. You’re so strong and have overcome so much. You have all of us to help encourage you. I will be glad once that is behind you too.

 

Lisa,

I am thinking of you and will look forward to hearing what the doctors say as they help you. I’m glad you have a great place like Vandy to help you. This journey is so tumultuous so having supportive doctors is a gift.

 

Leanne, Becks, Deanna and all,

I pray you are feeling better as well. I pray we all encounter the glorious healing that we so much long for.

 

Bless you everyone. 🙏❤️‍🩹

[[La...]]

Hey there!  I just wanted to touch base!  I am still at the Vanderbilt Hospital!  Feeling better and have learned so much! It turns out that some of the symptoms I attributed to benzo withdrawal are actually a return of my generalized anxiety/panic disorder.  I have been on an antidepressant for years for this condition, but evidently the dose I am currently taking is not therapeutic.  They have doubled my dose and my anxiety has already calmed down.  Also, I have met with a benzo psychiatrist who is going to refer me to a benzo specialist in Nashville.  They are very aware at Vandy of the dangers of benzos and don't really prescribe them. 

 

Anyway, I will post more later when I get back home.  I am so glad I made the decision to come!!!

 

Lisa

Lisa I’m happy that you have some relief and feeling more stable. You did what you needed to do. I was going to text you today to check on you and saw this post. Sending you my love  :smitten:

[[La...]]

I'm a year and a half off!! 27 years of usage including a killer 5+ year taper. There is hope . There's a good life out there, too. My best to all!!

Thank you Ultra! Way to go on your 1.5 years! Happy healing to you!

[[La...]]

Jordan thank you sweetheart. I wish you to turn a corner very soon. I’m cheering you and everyone and myself on to our better days with healing under our belts.

 

Enjoy your Sunday everyone

 

:smitten: :smitten:

[[Li...]]

Jordan,

I'm so sorry to hear of your suffering. I completely understand because I'm right there with you. This is all just too much. It really is a lot to endure.  Like you said if we can have a break even for a day, it would be glorious.

 

Thank you so much for the encouraging words.

 

Lisa,

So happy to hear you're finding some relief. That is such a blessing. I'm sure looking forward to a break myself. But for now I'm still struggling.

 

LadyDen,

Sounds like you might be improving some and that's wonderful. Keep moving forward dear sweet friend, until you turn that corner and heal for good.

 

I'm just hoping for a break soon.. I am having a very difficult time continuing to endure. All the symptoms are getting me down but this intense fear is just the worst I sure hope it's getting close to being done because it's really kicking my butt.  I just don't understand how it can continue on and on. Just a couple months back I was getting some long breaks from it and now it's just being relentless. All I want to do is cry.

 

Hugs!

 

LiveLife

[[de...]]

Several of you asked about the benzo doctor at Vanderbilt.  Unfortunately, he does not see patients except in the hospital setting.  There are a couple of other psychiatrists here that specialize in benzo withdrawal; I will try to find their names! 

[[La...]]

Morning hugs Yearlings Friends! I think I’ve decided to take a very short break from the forum for a few days. I’d like to focus on improving some things that would enhance my quality of life. This will be a bit difficult and cause my brain a little stress. What I’ll be working on is sitting up more during the day in hopes that i can finally not be in bed most of the day. I know this will cause me some rougher waves off and on. But I’ll never know if I can handle it unless I give it a fair try. I can’t type or hold my head down to be on this forum while I work on it. I hope my brain receives the message that I’m SUPPOSED to be able to sit up like a normal person and this isn’t any danger. I’m hopeful that it will stop reacting so wildly when I do this. Please keep me in mind to be successful in this little attempt to give a push. If im successful this would GREATLY improve my life!  I’ll be thinking of you all every day. I’ll miss you very much. Those of you who have my personal number can call or text me anytime. I’m also wishing you all nice turned corners and try all you can to push a little bit in trying things that you used to enjoy. That’s the only way we will know. It definitely will tell us how much we’ve healed. See you in a few days.

Love you all!

❤️❤️❤️

[[Li...]]

LadyDen,

You spend all the time you need taking care of yourself.  Wishing you all the best and that you get some good results. Sending you big hugs!

 

LiveLife

[[Pa...]]

Morning hugs Yearlings Friends! I think I’ve decided to take a very short break from the forum for a few days. I’d like to focus on improving some things that would enhance my quality of life. This will be a bit difficult and cause my brain a little stress. What I’ll be working on is sitting up more during the day in hopes that i can finally not be in bed most of the day. I know this will cause me some rougher waves off and on. But I’ll never know if I can handle it unless I give it a fair try. I can’t type or hold my head down to be on this forum while I work on it. I hope my brain receives the message that I’m SUPPOSED to be able to sit up like a normal person and this isn’t any danger. I’m hopeful that it will stop reacting so wildly when I do this. Please keep me in mind to be successful in this little attempt to give a push. If im successful this would GREATLY improve my life!  I’ll be thinking of you all every day. I’ll miss you very much. Those of you who have my personal number can call or text me anytime. I’m also wishing you all nice turned corners and try all you can to push a little bit in trying things that you used to enjoy. That’s the only way we will know. It definitely will tell us how much we’ve healed. See you in a few days.

Love you all!

❤️❤️❤️

Good luck, hope your efforts work out!

[[jo...]]

Several of you asked about the benzo doctor at Vanderbilt.  Unfortunately, he does not see patients except in the hospital setting.  There are a couple of other psychiatrists here that specialize in benzo withdrawal; I will try to find their names!

 

Hi Decatur,

Yes thank you so much. Can you let me know a few of the names? Thanks so much!

So glad you’ve been able to get some wonderful help.

[[jo...]]

Jordan,

I'm so sorry to hear of your suffering. I completely understand because I'm right there with you. This is all just too much. It really is a lot to endure.  Like you said if we can have a break even for a day, it would be glorious.

 

Thank you so much for the encouraging words.

 

Lisa,

So happy to hear you're finding some relief. That is such a blessing. I'm sure looking forward to a break myself. But for now I'm still struggling.

 

LadyDen,

Sounds like you might be improving some and that's wonderful. Keep moving forward dear sweet friend, until you turn that corner and heal for good.

 

I'm just hoping for a break soon.. I am having a very difficult time continuing to endure. All the symptoms are getting me down but this intense fear is just the worst I sure hope it's getting close to being done because it's really kicking my butt.  I just don't understand how it can continue on and on. Just a couple months back I was getting some long breaks from it and now it's just being relentless. All I want to do is cry.

 

Hugs!

 

LiveLife

 

Thank you so much Live. I’m having such a difficult time. The burning body and head is just too much. I’m exhausted by it all. Almost 12 months of non stop burning that brings me to my knees in pain.

I’m losing all hope at this point. I truly need a miracle. We all do.

 

I’m so sorry you’re struggling so greatly. If I could just have some windows I would be so grateful and my hope woukd be restored. My spirit is broken, sadly.  My poor body is under so much stress.

Im praying for us all. I pray you and your husband feel better soon. 🙏💕

Bless you.

[[jo...]]

Jordan thank you sweetheart. I wish you to turn a corner very soon. I’m cheering you and everyone and myself on to our better days with healing under our belts.

 

Enjoy your Sunday everyone

 

:smitten: :smitten:

 

Thank you LadyDen. I’m thinking of you and praying that your time away brings you much strength and healing. You are so strong and courageous and loved.

Bless you! 🙏💕

[[Li...]]

Jordan,

I'm so sorry to hear how bad your suffering is. I'm the same place that you're in but this is the intense chemical fear and depression. It's just so overpowering it's exhausting trying to get through the day. It sounds like you're experiencing similar with your burning pain. It's all just too much to endure. I understand exactly what you mean about wanting a window to give us some hope. That would be so wonderful. Thank you for your encouraging words, greatly appreciated!

 

Hugs,

 

LiveLife

[[La...]]

:smitten: :smitten: :smitten:

Hello Yearlings! I’ve missed you all so much! I’ve read your posts and appreciate all the encouragement you all sent my way. I took it with me when I practiced doing some normal things. Unfortunately I haven’t improved much in sitting up or walking but I’m still determined to find a way to succeed. I’m planning on trying different things until I am successful. I’m sending my brain a strong message to allow me to sit up like a normal person. It’s been long enough camping in this bed! Hopefully it will stop fighting me back and allow me to sit on a couch again. It’s hard and upsetting at times when it just won’t let me. But I find peace in knowing that it must be protecting me from disaster. If I push too much that won’t be good.

I hope you all had a great weekend. We’ve had much rain this past week which made it impossible to walk outside. Today is rainy too. When it clears out I’m going to give it a try.

Wishing you all better days and sending my love.

Please let me know how you’re doing, ❤️🌹❤️🌹