12-24 months and up support group

[[...]]

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

[[La...]]

Live, I agree too. We are recovering to return to homeostasis. I hope you’re feeling better today. Sending you love and hugs 🤗

 

Fox I’ve had sweating off and on. In my first year it was pretty much everyday or night. Like the others I’d wake up drench and with a strange body odor. Now I get sweating spells mildly every now and then. Quick pop in then quickly leave mostly when I’m in a wave.

 

Jordan IMO any or all of these symptoms are so uncomfortable. What I hate the most is the minute I think I’m making good ground, I get slammed. So frustrating. After such a long time it makes people think they won’t heal or are not healing especially getting slammed again after feeling better for awhile. Benzo Bully is cruel like that. Some people have symptoms or waves for a good while with few windows or their windows are so short then suddenly they turn a good corner and make big healing strides….and they stay that way until the last little annoying symptoms fade out. Some like me, get better taking 3 steps forward for a few weeks then slammed taking two steps back for a few weeks with each cycle of this leaving a better baseline of their usual symptoms. And windows get better too. But this is so slow. The two steps back makes it appear there’s been no progress. And like Helen just did, you have to look back further to see the healing. Everyone’s healing is unique. It would be a perfect world to just be done with this quickly. A very very lucky very few have that happen. It’s hard to just simply say to yourself “ these are just symptoms. They’re not me!”

Happy Sunday everyone. ❤️🌹

[[Li...]]

Jordan,

 

I feel your pain.  All this burning is just part of the healing process as difficult as it is. I had a terrible weird cough that lasted for 18 months and then finally just went away. It was very difficult because at times I couldn't breathe and it was hard to sleep.  At times I had to use an inhaler actually pretty often to open up my airways. I never had asthma in my life until then. Now it's gone. I've had many other symptoms. Right now I have a relentless fear. This fear is chemical in nature is so intense comes to me through the night and plagues me all day long. I've had it now for 16 months and hoping it's going to finish up soon. It's so hard to get through a day or a night right now. I get very few breaks last week I had a 30 minute window on Monday night and then Tuesday mid morning about 20 minutes and that was it, it's been brutal.  It's so hard to hang on and get through these days. It's great that you're able to work I don't know how but that's a good distraction for you. And the fact you're able to go to church is even more amazing. I love my congregation meetings but unable to attend so I have to view it on zoom. Here's hoping we both turn a corner very very soon.

 

LadyDen,

I sure hope you're feeling better. Nothing's really changed for me yet just barely hanging on. This is such cruel and unusual punishment and we didn't even commit a crime. I'm getting very depressed trying to hang on, it gets so scary at times with this intense chemical fear it's out of control. Worse than ever. This has to mean it's close to the finish line. I know I keep saying it's getting worse and I can't believe that, but it has. I sure wish it would up and take its leave.

 

Big hugs!

 

LiveLife

 

 

[[le...]]

Hi live, I see you have taken an anti psychotic after looking at the seroquel  support group. Just wondered how you found olanzapine  whether managed taper off it. My symptoms become unbearable last 3 weeks for some reason, psych prescribed seroquel.  Never tried anti psychotics before.

[[le...]]

Ok thanks, need something for anxiety not sleep, but thanks for reply.

[[Li...]]

Leann

Sorry my post somehow got deleted. I took 2.5 mg a few times a week for sleep. I stopped it with no problems. I know there are other benzo buddies that don't like it at all and had a terrible problem with it. We're all different so it's hard to say. What works for one person may not for another. 

 

LiveLife

[[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

[[jo...]]

Live, I agree too. We are recovering to return to homeostasis. I hope you’re feeling better today. Sending you love and hugs 🤗

 

Fox I’ve had sweating off and on. In my first year it was pretty much everyday or night. Like the others I’d wake up drench and with a strange body odor. Now I get sweating spells mildly every now and then. Quick pop in then quickly leave mostly when I’m in a wave.

 

Jordan IMO any or all of these symptoms are so uncomfortable. What I hate the most is the minute I think I’m making good ground, I get slammed. So frustrating. After such a long time it makes people think they won’t heal or are not healing especially getting slammed again after feeling better for awhile. Benzo Bully is cruel like that. Some people have symptoms or waves for a good while with few windows or their windows are so short then suddenly they turn a good corner and make big healing strides….and they stay that way until the last little annoying symptoms fade out. Some like me, get better taking 3 steps forward for a few weeks then slammed taking two steps back for a few weeks with each cycle of this leaving a better baseline of their usual symptoms. And windows get better too. But this is so slow. The two steps back makes it appear there’s been no progress. And like Helen just did, you have to look back further to see the healing. Everyone’s healing is unique. It would be a perfect world to just be done with this quickly. A very very lucky very few have that happen. It’s hard to just simply say to yourself “ these are just symptoms. They’re not me!”

Happy Sunday everyone. ❤️🌹

 

LadyDen,

You are always so kind to encourage me here and your words are so heartfelt.

Yes, this is definitely how it is for me, just getting slammed and then a day of moderate burning and symptoms and then slammed again and again.

 

Benzo bully is a perfect name for it. It’s like it lurks in the shadows to pounce on us over and over.

So very cruel and tormenting. I try to look back and see how far I’ve come, yet it’s not very far. I’m praying for that wonderful long window to restore my hope that all will be well for me one day.

I pray that for all of us. I’m so grateful for this group and the encouragement found here.

Bless you sweet LadyDen. ❤️

[[jo...]]

Jordan,

 

I feel your pain.  All this burning is just part of the healing process as difficult as it is. I had a terrible weird cough that lasted for 18 months and then finally just went away. It was very difficult because at times I couldn't breathe and it was hard to sleep.  At times I had to use an inhaler actually pretty often to open up my airways. I never had asthma in my life until then. Now it's gone. I've had many other symptoms. Right now I have a relentless fear. This fear is chemical in nature is so intense comes to me through the night and plagues me all day long. I've had it now for 16 months and hoping it's going to finish up soon. It's so hard to get through a day or a night right now. I get very few breaks last week I had a 30 minute window on Monday night and then Tuesday mid morning about 20 minutes and that was it, it's been brutal.  It's so hard to hang on and get through these days. It's great that you're able to work I don't know how but that's a good distraction for you. And the fact you're able to go to church is even more amazing. I love my congregation meetings but unable to attend so I have to view it on zoom. Here's hoping we both turn a corner very very soon.

 

LadyDen,

I sure hope you're feeling better. Nothing's really changed for me yet just barely hanging on. This is such cruel and unusual punishment and we didn't even commit a crime. I'm getting very depressed trying to hang on, it gets so scary at times with this intense chemical fear it's out of control. Worse than ever. This has to mean it's close to the finish line. I know I keep saying it's getting worse and I can't believe that, but it has. I sure wish it would up and take its leave.

 

Big hugs!

 

LiveLife

 

LiveLife,

I’m so sorry that you’re struggling as well. I understand that chemical fear. It comes over me out of nowhere and my whole body begins shaking like a washing machine agitating. It’s almost like a seizure as my legs just shake out of control. I think it must be a cortisol or adrenaline surge. My neurotransmitters must be so out of whack; and my gaba receptors are apparently having great difficulty handling the outbursts. Do you get the shaking too Live?

I don’t get the sweating but my body gets a rush of heat surging through, so my ice packs are always close. Sometimes I go stick my feet in the tub and run cool water on my legs.

 

You should see my night routine, LOL! I place two large nylon ice packs at my back, a long ice pack wrap on my left shoulder (it’s the left side of my body that has the most burning), then I have the wet washcloth around my neck, and I sleep propped up somewhat in my adjustable bed, and have two small  ice packs behind my right shoulder. (side sleeper), and to top it off, I have a cool mist humidifier blowing toward my bed. So, all that to say, maybe you could try a few of those tools to help your panic attacks and sweating at night.

 

I sure hope we turn a corner too LiveLife. I’m so sorry you’ve had to endure for so long. It’s very hard to keep our spirit unbroken, and the waves of depression, fear and chemical anxiety come crashing on us. I am sending you so much love and pray for you often. I pray we all have the healing angels surround us soon. Bless you LiveLife. 💕🙏🤗🥰

[[de...]]

Hey buddies!  Just reaching out for help.  I am struggling terribly!  Off the chart anxiety/panic!!  I think I might need to go in-patient somewhere and get some help, but don't know where.  I am at the end of my rope!  The stress of the thing with my daughter has ramped everything up big time and now my husband says he wants out of the marriage because I am not doing anything to try to get over this!  I am so sorry to be such a downer!  Would appreciate your prayers.  Just so broken at the moment! 

 

Lisa

[[Ga...]]

Sent you a reply....hold on, Lisa!

[[He...]]

Decatur,

 

I'm so very sorry.  You have huge stressors and anyone (not to mention someone in recovery) would have a hard time with this.  Instead of in-patient, would it help to have a session with a therapist or a minister?  I'm just throwing out ideas. I'm going to hold you in my heart.  Breathe if you can. 

 

Hugs,

Helen

 

[[La...]]

Anyone sweating at this far out? Feeling like the neck, scalp, hands and feet, behind the knees. Headaches.

 

FoxClover,

 

I'm not sweating too much anymore.  I did sweat quite a bit earlier on.  Headaches are less for me but still occasional. Hope you get some relief soon. 

 

Helen

The same with me on those two symptoms.

[[La...]]

Jordan,

 

I feel your pain.  All this burning is just part of the healing process as difficult as it is. I had a terrible weird cough that lasted for 18 months and then finally just went away. It was very difficult because at times I couldn't breathe and it was hard to sleep.  At times I had to use an inhaler actually pretty often to open up my airways. I never had asthma in my life until then. Now it's gone. I've had many other symptoms. Right now I have a relentless fear. This fear is chemical in nature is so intense comes to me through the night and plagues me all day long. I've had it now for 16 months and hoping it's going to finish up soon. It's so hard to get through a day or a night right now. I get very few breaks last week I had a 30 minute window on Monday night and then Tuesday mid morning about 20 minutes and that was it, it's been brutal.  It's so hard to hang on and get through these days. It's great that you're able to work I don't know how but that's a good distraction for you. And the fact you're able to go to church is even more amazing. I love my congregation meetings but unable to attend so I have to view it on zoom. Here's hoping we both turn a corner very very soon.

 

LadyDen,

I sure hope you're feeling better. Nothing's really changed for me yet just barely hanging on. This is such cruel and unusual punishment and we didn't even commit a crime. I'm getting very depressed trying to hang on, it gets so scary at times with this intense chemical fear it's out of control. Worse than ever. This has to mean it's close to the finish line. I know I keep saying it's getting worse and I can't believe that, but it has. I sure wish it would up and take its leave.

 

Big hugs!

 

LiveLife

Yes we are definitely doing the time. I don’t know what to say about that other than it sucks! I agree this has to be us making a big push to the finishline just like in a marathon race. Exhausted beyond words at the end but you finally see that long ribbon stretched out before you. The sight of it gives unexpected rush to push you enough to make it to it….with all you have left in you, you go for it knowing it won’t be much further. You’re at the end so you can’t quit now….that finish line is right there!!!! Anyway, that’s how I see it. 

I’m thinking of you dear. We can make it!

[[La...]]

Live, I agree too. We are recovering to return to homeostasis. I hope you’re feeling better today. Sending you love and hugs 🤗

 

Fox I’ve had sweating off and on. In my first year it was pretty much everyday or night. Like the others I’d wake up drench and with a strange body odor. Now I get sweating spells mildly every now and then. Quick pop in then quickly leave mostly when I’m in a wave.

 

Jordan IMO any or all of these symptoms are so uncomfortable. What I hate the most is the minute I think I’m making good ground, I get slammed. So frustrating. After such a long time it makes people think they won’t heal or are not healing especially getting slammed again after feeling better for awhile. Benzo Bully is cruel like that. Some people have symptoms or waves for a good while with few windows or their windows are so short then suddenly they turn a good corner and make big healing strides….and they stay that way until the last little annoying symptoms fade out. Some like me, get better taking 3 steps forward for a few weeks then slammed taking two steps back for a few weeks with each cycle of this leaving a better baseline of their usual symptoms. And windows get better too. But this is so slow. The two steps back makes it appear there’s been no progress. And like Helen just did, you have to look back further to see the healing. Everyone’s healing is unique. It would be a perfect world to just be done with this quickly. A very very lucky very few have that happen. It’s hard to just simply say to yourself “ these are just symptoms. They’re not me!”

Happy Sunday everyone. ❤️🌹

 

LadyDen,

You are always so kind to encourage me here and your words are so heartfelt.

Yes, this is definitely how it is for me, just getting slammed and then a day of moderate burning and symptoms and then slammed again and again.

 

Benzo bully is a perfect name for it. It’s like it lurks in the shadows to pounce on us over and over.

So very cruel and tormenting. I try to look back and see how far I’ve come, yet it’s not very far. I’m praying for that wonderful long window to restore my hope that all will be well for me one day.

I pray that for all of us. I’m so grateful for this group and the encouragement found here.

Bless you sweet LadyDen. ❤️

:smitten: :smitten: Thank you. Keep the faith! Hang in there! We are doing this together!

[[La...]]

Decatur,

 

I'm so very sorry.  You have huge stressors and anyone (not to mention someone in recovery) would have a hard time with this.  Instead of in-patient, would it help to have a session with a therapist or a minister?  I'm just throwing out ideas. I'm going to hold you in my heart.  Breathe if you can. 

 

Hugs,

Helen

I agree with this! A therapist to talk it out is a great idea. Or even a pastor that you trust. Sending hugs and love your way, Lisa.

[[Li...]]

Jordan,

That's quite a routine you have but it seems like it works when you're burning ice is going to cool it. We have to do whatever we can to survive this situation we're in.  It's just so difficult.

 

LadyDen,

That's definitely a good analogy about the race. We are just in this to win and we can't stop now, as you said.  It's true we're all just so exhausted of fighting this we're trying to take the last bit of energy we have to get through to the end and hopefully it's close to the finish line for us.

 

Lisa,

I'm so sorry to hear that you're suffering like this. I know this stress isn't helping with your daughter and then for your husband to say that to you. It breaks my heart. I wonder if a therapy session could help you as others have mentioned.  I don't really know what to suggest it's so difficult. I understand because I'm going through a very stressful situation myself and it definitely makes it more challenging.

 

Sending warm love and healing hugs to all!

 

LiveLife

[[de...]]

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

[[La...]]

Jordan,

That's quite a routine you have but it seems like it works when you're burning ice is going to cool it. We have to do whatever we can to survive this situation we're in.  It's just so difficult.

 

LadyDen,

That's definitely a good analogy about the race. We are just in this to win and we can't stop now, as you said.  It's true we're all just so exhausted of fighting this we're trying to take the last bit of energy we have to get through to the end and hopefully it's close to the finish line for us.

 

Lisa,

I'm so sorry to hear that you're suffering like this. I know this stress isn't helping with your daughter and then for your husband to say that to you. It breaks my heart. I wonder if a therapy session could help you as others have mentioned.  I don't really know what to suggest it's so difficult. I understand because I'm going through a very stressful situation myself and it definitely makes it more challenging.

 

Sending warm love and healing hugs to all!

 

LiveLife

Live, that’s exactly what I was meaning 

I’m so ready for some corner turning! Sooooo ready! And I know you are too.

 

[[La...]]

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

Wishing you well and sending you love, Lisa. It’s best to get checked out just to make sure. I’m sorry that you’re going through this. I’ll keep you in my thoughts and warm hugs to you. Thanks for the update.

❤️❤️❤️❤️

[[La...]]

Morning hugs Yearlings! Where is everyone? I pray that you’re MIA because you’re feeling better and out having some fun. May you all enjoy your day today. I have appointment with Dr Leigh in about an hour. Hopefully my morning dread will settle down before then…..

❤️🤗🌹

Pashu JB JBen Helen Lisa GG Leann Live Jordan Aly Sage Sandy and whoever I missed….big warm squeezy but not too tight HUGS 🤗

Let’s keep the love and support going together. 

[[...]]

It is so, so, so bad this morning.  I cant stand the pain.  I have been crying and crying it hurts so bad.  I think bacon cause a huge huge wave.  That is the only thing I have done differently in the past 3 days.  I feel like I am way back in acute again.  I just dont understand how I can be in so much pain: he burning nerves the severe, severe anxiety.  My body feels so stressed out I cannot even function.  It is so bad.

[[He...]]

Awww, J Ben.  This is no fair.  I'm so very sorry.  You think bacon might have triggered it? I guess bacon has nitrates in it?  I hate for you to be hurting so. 

 

Lady Den, I hope your appt with Dr. Leigh is helpful and sheds some light on the process for you. I wish you nothing but a steady gait and a feeling of love and hope.

 

LifeLife, I know things are so hard for you right now in many ways.  I'm thinking of you.

 

All those who are suffering, you have my thoughts. 

 

I'm still doing mostly well.  I'm tingling a lot in my scalp throughout the night and not sleeping much but around mid day, I'm feeling pretty good each day.  I will see when the lack of sleep catches up with me.  All in all, I'm getting some good glimpses of a somewhat "normal" life.  It's encouraging.  Now I'm trying to figure out if and when to get the Bivalent booster shot.  Hmmm...

 

Hugs to all,

Helen

 

[[le...]]

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 💕

[[He...]]

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.