“Help me!!” UPDATE (spoke to a neurologist)

[[hl...]]

Hello everyone. This is an update to the post I made titled “help me!!”

over the last few days I’ve been experiencing extreme akathisia/overstimulation, or sensory overload.

it is still pretty much 24/7 and nothing provides me any sort of relief whatsoever which is very unfortunate. I’m 13 months out and not really getting any better and new symptoms like this keep popping up for no reason. No fun.

the overstimulation is more on the light sensitivity side but it still burns my brain and causes me great discomfort. I feel like I can’t process what’s going on and my brain is becoming overwhelmed.

i spoke to my neurologist today and she and I are in agreement that the issues in facing are related to neurotransmitters and a chemical imbalance. She believes the over stimulation is due to that. She also wants me to take Memantine because of my “poor cognition”. This is a pill for people with Alzheimer’s. I probably won’t take it. She also believes I won’t heal on my own. I don’t know what to do.

 

has anyone every recovered from overstimulation? I can’t leave the house at all, I can’t watch tv, or do anything really. I just want me life back. I feel like this is really my last major symptom. I can deal with jelly legs and a bit of dizziness here and there. But if I could leave my home without feeling like my brain is going to explode, that would be great 

[[Sa...]]

@[hl...] sorry that you are going through this tough situation. May i ask what was your drug history? Which meds did you take, and for how long?

[[Pa...]]

@[hl...], I'd appreciate knowing your medication history as well, please use these instructions to fill in the 'About Me' in your profile.  If you can't do that, at least list your medications here and the reason you're seeing a neurologist, plus any pertinent medical history.  We can't properly address your concerns if we don't know your history.  

 

[[hl...]]

@[Pa...] @[Sa...]

 

i was originally prescribed .5mg of Xanax for anxiety. I took it off and on for about 3 months. I was then given lexapro and instructed to take Xanax daily to combat the symptoms getting on lexapro. Decided lexapro wasn’t for me so I CT’d it and took Xanax again daily to combat the withdrawal. All together I was on Xanax almost nightly for 4-5 months. 
 

One night I decided to not take it and started having anxiety. Took the Xanax and it didn’t help, I needed to take 2 to not feel anxious. This is when I realized I was dependent. I spoke to my psychiatrist and he gave me a taper plan. Started having interpose withdrawal and I switched to klonopin. It took me 8 months to complete my taper, my last dose was July 12, 2022

[[de...]]

@[hl...] Did the neurologist give a reason why she thinks you wont heal on your own?   And not sure what "on your own" even means.  Can you go into that a little more?    Is she the one who initially prescribed the Xanax and the Lexapro?    Sorry about all the questions, just trying to piece everything together.   

I am sorry you are struggling so much.   I think I mentioned before that 13 months can be sort of a tricky time in recovery.   I have read lots of different posts of people really struggling around this time.  Of course, everyone is different.   

I would love more details if you are willing to provide those.

[[hl...]]

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

@[hl...] Did the neurologist give a reason why she thinks you wont heal on your own?   And not sure what "on your own" even means.  Can you go into that a little more?    Is she the one who initially prescribed the Xanax and the Lexapro?    Sorry about all the questions, just trying to piece everything together.   

I am sorry you are struggling so much.   I think I mentioned before that 13 months can be sort of a tricky time in recovery.   I have read lots of different posts of people really struggling around this time.  Of course, everyone is different.   

I would love more details if you are willing to provide those.

Sure I’ll explain a bit more, I’m sorry I didn’t earlier I was in a rush.

i was experiencing extreme dizziness around 8 months post taper that wasn’t resolving. I was so dizzy I couldn’t even walk or sit up straight. After a few visits to the ER (mostly fueled by anxiety) I decided it made sense to look into seeing a neurologist that could look into my dizziness further. 
 

This neurologist gave me a VNG and I’ve been seeing her reguarding dizziness and brain fog, and I mentioned my overstimulation to her a few months ago.

 

she told me on our previous visit tbat she believes that my brain is just sensitive and that I need another benzodiazepine to calm my brain, right after I informed her that all of these symptoms appeared after I discontinued benzodiazepines.

 

I saw her today and explained that I’ve been dealing with overstimulation, light sensitivity, and akathisia and she mentioned that it’s possible the benzodiazepines caused my neurotransmitters to be acting up and that she is unsure if it will return to normal

[[dj...]]

No offense, but most neurologists really aren’t familiar with BIND, so I would take anything they say, good or bad, with a grain of salt.  
 

Neurologists can be useful to rule other stuff out though.  Pretty much all the posts I’ve read on here about people going to the neurologist confirm they have no other condition and their MRIs are normal.  

[[jo...]]

@[hl...]

Hi there, you’re story is similar to mine.  
I had fast tapered an AD and 7 months later started having terrible anxiety and symptoms. My doc tried to start me on lexapro and gave me Xanax to help with start up. The lexapro gave me bad effects so my doc told me to stop the lexapro and just take the Xanax. Worst advice ever! I didn’t even know what Xanax was nor what a Benzo was. I trusted my doc. She never warned me of the dangers. I don’t think she even knows! 
 

I took .025 mg Xanax once a day for 3 months. Arms starting burning and I couldn’t figure out what was wrong. I went to my doc for labs and to my dermatologist. Finally researched and found Benzo buddies and realized I was having interdose withdrawals. I then tried to taper for 4 months and my body was burning on my legs and head/scalp. I only came down 10% and my doc wouldn’t cross me over. After 4 months I called a detox place and they said they could help me and the detox woukd help get the Xanax out if my system so I could heal. Biggest mistake ever!!! I was basically CT. 
 

After detox my body felt like it had been doused with gasoline and a match lit. Literally on fire!! 
I am still burning!!! 
 

I am now in month 21 and still have the burning  brain and scalp, legs and shoulders.  At month 13 I started getting the deep nerve pain and muscle pain in my legs, pelvis and hips.  The pain is inconceivable and no human should have to endure. It is impossible to imagine unless one has experienced it. 
 

I have spent thousands on docs, labs, neurologist, mri, nerve conduction tests and on and on. All tests were normal.  I’ve also had Three ER visits for pain.  My neurologist said this is all withdrawal and the receptors will heal.
 

I’ve also read from a brain surgeon who said we have gaba receptors in ou blood vessels. So even though the brain cannot feel, we have thousands of vessels in our cranial nerves, thus the burning brain,and elsewhere.

 

My journey has been absolutely hell and I don’t know how I’ve made it other than my faith and friends I’ve met on the forums.  This platform is a lifeline. I’ve lost friends and much more.  The chemical anxiety surges daily and my mornings are filled with fear due to the cortisol and adrenaline overload.  
 

I HAVE NEVER HAD A WINDOW since detox 21 months ago! It’s very hard to endure and hard to  think that I’m healing when I see and feel no evidence if it, and get new symptoms so late in withdrawal, but apparently new symptoms can happen anytime. 
 

I have spoken to Baylissa multiple times and she has helped over 13,000 people and still does today. She advises that the anecdotal evidence she has accrued and studied is that everyone does heal.  Some take much longer. Some aren’t lucky enough to get a window, some wake up healed after months of suffering. I have questioned many times if I am ever going to heal because I am feeling much worse than my first year.

Each day is a battlefield of the mind and body. But our CNS is trying to get back to homeostasis. It’s so non linear that it is easy to loose hope. I have lost hope often as the pain is severe, but somehow I get through the day, praying that the next day will be better.  
 

That “Better” day has still not come, but I have to try and keep believing that I will heal. Others before us have healed.  There are many people with different stories, dna, history, other conditions that all factor in.  I wish we coukd know how long it’s going to take but it’s impossible to know.  
 

Perhaps you might want to reach out to Baylissa and have a session with her to ease your mind about healing. She also has a website with support and you can join the support group to access webinars and live zoom sessions. It has been very encouraging and informative. 

I hope you start to feeling better but you are still in the early months and things can change quickly; symptoms can drop and new ones arrive. You can also wake up healed. Anything is possible.

Baylissa advises that severity of symptoms is not an indication of duration.  I hope we all heal soon. This has crushed me, but I have to keep trusting. 
Take good care!
 

[[dj...]]

Did the neurologist say anything about trying an anticonvulsant like Trileptal, Depakote or Topamax?  The neurologist I saw said if she had to pick a medication to put me on it would be one of those.  She said it’s probably just neurons overfiring and need to be settled some.  She specifically said antidepressants won’t help.  Those medications are used for migraines too.  
 

 

[[Pa...]]

Thanks for providing some background, I hope at some point you'll put this information into your 'About Me' so others can know at a glance what your history is.  

Does your neurologist have experience with patients dealing with benzodiazepine withdrawal and recovery, if not, then I like @[dj...] would question her assumptions, not many in the medical field understand our plight.  I also question her use of the term "chemical imbalance", this is an often misused and questionable term.  

 

[[dj...]]

2 minutes ago, [[j...] said:

@[hl...]

Hi there, you’re story is similar to mine.  
I had fast tapered an AD and 7 months later started having terrible anxiety and symptoms. My doc tried to start me on lexapro and gave me Xanax to help with start up. The lexapro gave me bad effects so my doc told me to stop the lexapro and just take the Xanax. Worst advice ever! I didn’t even know what Xanax was nor what a Benzo was. I trusted my doc. She never warned me of the dangers. I don’t think she even knows! 
 

I took .025 mg Xanax once a day for 3 months. Arms starting burning and I couldn’t figure out what was wrong. I went to my doc for labs and to my dermatologist. Finally researched and found Benzo buddies and realized I was having interdose withdrawals. I then tried to taper for 4 months and my body was burning on my legs and head/scalp. I only came down 10% and my doc wouldn’t cross me over. After 4 months I called a detox place and they said they could help me and the detox woukd help get the Xanax out if my system so I could heal. Biggest mistake ever!!! I was basically CT. 
 

After detox my body felt like it had been doused with gasoline and a match lit. Literally on fire!! 
I am still burning!!! 
 

I am now in month 21 and still have the burning  brain and scalp, legs and shoulders.  At month 13 I started getting the deep nerve pain and muscle pain in my legs, pelvis and hips.  The pain is inconceivable and no human should have to endure. It is impossible to imagine unless one has experienced it. 
 

I have spent thousands on docs, labs, neurologist, mri, nerve conduction tests and on and on. All tests were normal.  I’ve also had Three ER visits for pain.  My neurologist said this is all withdrawal and the receptors will heal.
 

I’ve also read from a brain surgeon who said we have gaba receptors in ou blood vessels. So even though the brain cannot feel, we have thousands of vessels in our cranial nerves, thus the burning brain,and elsewhere.

My journey has been absolutely hell and I don’t know how I’ve made it other than my faith and friends I’ve met on the forums.  This platform is a lifeline. I’ve lost friends and much more.  The chemical anxiety surges daily and my mornings are filled with fear due to the cortisol and adrenaline overload.  
 

I HAVE NEVER HAD A WINDOW since detox.  It’s very hard to endure and think that I’m healing when I see and feel no evidence if it, and get new symptoms so late in withdrawal, but apparently new symptoms can happen anytime. 
 

I have spoken to Baylissa multiple times and she has helped over 13,000 people and still does today. She advises that the anecdotal evidence she has accrued and studied is that everyone does heal.  Some take much longer. Some aren’t lucky enough to get a window, some wake up healed after months of suffering. I have questioned many times if I am ever going to heal because I am feeling much worse than my first year.

Each day is a battlefield of the mind and body. But our CNS is trying to get back to homeostasis. It’s so non linear that it is easy to loose hope. I have lost hope often as the pain is severe, but somehow I get through the day, praying that the next day will be better.  
 

That “Better” day has still not come, but I have to try and keep believing that I will heal. Others before us have healed.  There are many people with different stories, dna, history, other conditions that all factor in.  I wish we coukd know how long it’s going to take but it’s impossible to know.  
 

Perhaps you might want to reach out to Baylissa and have a session with her to ease your mind about healing. She also has a website with support and you can join the support group to access webinars and live zoom sessions. It has been very encouraging and informative. 

I hope you start to feeling better but you are still in the early months and things can change quickly; symptoms can drop and new ones arrive. You can also wake up healed. Anything is possible.

Baylissa advises that severity of symptoms is not an indication of duration.  I hope we all heal soon. This has crushed me, but I have to keep trusting. 
Take good care!
 

Sorry about what you are going through.  I like your optimism though.  You’ll do great once the healing begins.  

[[jo...]]

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

Sorry about what you are going through.  I like your optimism though.  You’ll do great once the healing begins.  

Thank you so much @[dj...] I hope to see the evidence of healing soon. 21 months is a long time to endure the suffering and trauma from this terrible journey, but baylissa says healing is happening even though we may not feel or see it. I hope you are doing well. 💕

[[hl...]]

3 hours ago, [[d...] said:

Did the neurologist say anything about trying an anticonvulsant like Trileptal, Depakote or Topamax?  The neurologist I saw said if she had to pick a medication to put me on it would be one of those.  She said it’s probably just neurons overfiring and need to be settled some.  She specifically said antidepressants won’t help.  Those medications are used for migraines too.  
 

She recommended a take Memantine because I scored poorly on a cognitive test. This medication is a cognitive booster. I’m not going to take it, I see no reason to. My impaired cognition is the least of my concerns at the moment. 

[[hl...]]

3 hours ago, [[j...] said:

@[hl...]

Hi there, you’re story is similar to mine.  
I had fast tapered an AD and 7 months later started having terrible anxiety and symptoms. My doc tried to start me on lexapro and gave me Xanax to help with start up. The lexapro gave me bad effects so my doc told me to stop the lexapro and just take the Xanax. Worst advice ever! I didn’t even know what Xanax was nor what a Benzo was. I trusted my doc. She never warned me of the dangers. I don’t think she even knows! 
 

I took .025 mg Xanax once a day for 3 months. Arms starting burning and I couldn’t figure out what was wrong. I went to my doc for labs and to my dermatologist. Finally researched and found Benzo buddies and realized I was having interdose withdrawals. I then tried to taper for 4 months and my body was burning on my legs and head/scalp. I only came down 10% and my doc wouldn’t cross me over. After 4 months I called a detox place and they said they could help me and the detox woukd help get the Xanax out if my system so I could heal. Biggest mistake ever!!! I was basically CT. 
 

After detox my body felt like it had been doused with gasoline and a match lit. Literally on fire!! 
I am still burning!!! 
 

I am now in month 21 and still have the burning  brain and scalp, legs and shoulders.  At month 13 I started getting the deep nerve pain and muscle pain in my legs, pelvis and hips.  The pain is inconceivable and no human should have to endure. It is impossible to imagine unless one has experienced it. 
 

I have spent thousands on docs, labs, neurologist, mri, nerve conduction tests and on and on. All tests were normal.  I’ve also had Three ER visits for pain.  My neurologist said this is all withdrawal and the receptors will heal.
 

I’ve also read from a brain surgeon who said we have gaba receptors in ou blood vessels. So even though the brain cannot feel, we have thousands of vessels in our cranial nerves, thus the burning brain,and elsewhere.

My journey has been absolutely hell and I don’t know how I’ve made it other than my faith and friends I’ve met on the forums.  This platform is a lifeline. I’ve lost friends and much more.  The chemical anxiety surges daily and my mornings are filled with fear due to the cortisol and adrenaline overload.  
 

I HAVE NEVER HAD A WINDOW since detox 21 months ago! It’s very hard to endure and hard to  think that I’m healing when I see and feel no evidence if it, and get new symptoms so late in withdrawal, but apparently new symptoms can happen anytime. 
 

I have spoken to Baylissa multiple times and she has helped over 13,000 people and still does today. She advises that the anecdotal evidence she has accrued and studied is that everyone does heal.  Some take much longer. Some aren’t lucky enough to get a window, some wake up healed after months of suffering. I have questioned many times if I am ever going to heal because I am feeling much worse than my first year.

Each day is a battlefield of the mind and body. But our CNS is trying to get back to homeostasis. It’s so non linear that it is easy to loose hope. I have lost hope often as the pain is severe, but somehow I get through the day, praying that the next day will be better.  
 

That “Better” day has still not come, but I have to try and keep believing that I will heal. Others before us have healed.  There are many people with different stories, dna, history, other conditions that all factor in.  I wish we coukd know how long it’s going to take but it’s impossible to know.  
 

Perhaps you might want to reach out to Baylissa and have a session with her to ease your mind about healing. She also has a website with support and you can join the support group to access webinars and live zoom sessions. It has been very encouraging and informative. 

I hope you start to feeling better but you are still in the early months and things can change quickly; symptoms can drop and new ones arrive. You can also wake up healed. Anything is possible.

Baylissa advises that severity of symptoms is not an indication of duration.  I hope we all heal soon. This has crushed me, but I have to keep trusting. 
Take good care!
 

The burning brain symptom + overstimulation is by far the worst symptom I have so far. Can you explain a bit more about what the burning brain feels like for you?

[[da...]]

I have experienced this at least two times in my life: Any music, TV, people, anything was terrifying... I was certain that I had lost my mind. I couldn't handle anything. It was miserable and I felt hopeless. Really, really scary. It did go away. it was like psychosis, perhaps it was. Its adrenaline overload. Literally too much anxiety and not enough GABA

I hope the best for you. It will pass

[[Sa...]]

@[da...] thanks for the assurance. You mentioned twice, what caused it ? How long was your recovery?

[[st...]]

I was in the same situation as you at 13 months out. I felt with each passing month that i was getting worse. I am now at 20 months and those symptoms you mentioned are lessening as time goes on.  My waves are still bad but the windows and getting better and longer.  Everything you mentioned is common in bnezo wd and will heal with time. Atleast that's my experience. I know how scary it is and one of the symptoms is us actually trying to find answers and solve the problem. It's your limbic system in overdrive. I promise it will get better with time. Only question is when. That's the hard part. I feel if we knew the exact date this would all stop it would be easier but we can't. You will heal! Xo

[[da...]]

One time was during a very very stressful period when I stopped my valium suddenly - not knowing that a slow withdrawal was necessary. Other times were very very severe episodes of depression mixed with anxiety. I just felt like I was on overload.  these were hard hard times..... I'm sorry for your suffering

[[jo...]]

On 18/08/2023 at 00:14, [[h...] said:

The burning brain symptom + overstimulation is by far the worst symptom I have so far. Can you explain a bit more about what the burning brain feels like for you?

@[hl...] the burning brain feels like acid in my blood vessels, like 1000 fire ants, or hot lava in my cranial nerves. It is mostly on the left side of my head, legs, shoulders and hips. Sometimes my legs feel like something is tearing and ripping the tissues. It is excruciating and inconceivable pain that takes my breath away. Insurmountable pain that no being should have to endure.🥲

[[Iw...]]

On 17/08/2023 at 21:45, [[j...] said:

@[hl...]

Hi there, you’re story is similar to mine.  
I had fast tapered an AD and 7 months later started having terrible anxiety and symptoms. My doc tried to start me on lexapro and gave me Xanax to help with start up. The lexapro gave me bad effects so my doc told me to stop the lexapro and just take the Xanax. Worst advice ever! I didn’t even know what Xanax was nor what a Benzo was. I trusted my doc. She never warned me of the dangers. I don’t think she even knows! 
 

I took .025 mg Xanax once a day for 3 months. Arms starting burning and I couldn’t figure out what was wrong. I went to my doc for labs and to my dermatologist. Finally researched and found Benzo buddies and realized I was having interdose withdrawals. I then tried to taper for 4 months and my body was burning on my legs and head/scalp. I only came down 10% and my doc wouldn’t cross me over. After 4 months I called a detox place and they said they could help me and the detox woukd help get the Xanax out if my system so I could heal. Biggest mistake ever!!! I was basically CT. 
 

After detox my body felt like it had been doused with gasoline and a match lit. Literally on fire!! 
I am still burning!!! 
 

I am now in month 21 and still have the burning  brain and scalp, legs and shoulders.  At month 13 I started getting the deep nerve pain and muscle pain in my legs, pelvis and hips.  The pain is inconceivable and no human should have to endure. It is impossible to imagine unless one has experienced it. 
 

I have spent thousands on docs, labs, neurologist, mri, nerve conduction tests and on and on. All tests were normal.  I’ve also had Three ER visits for pain.  My neurologist said this is all withdrawal and the receptors will heal.
 

I’ve also read from a brain surgeon who said we have gaba receptors in ou blood vessels. So even though the brain cannot feel, we have thousands of vessels in our cranial nerves, thus the burning brain,and elsewhere.

My journey has been absolutely hell and I don’t know how I’ve made it other than my faith and friends I’ve met on the forums.  This platform is a lifeline. I’ve lost friends and much more.  The chemical anxiety surges daily and my mornings are filled with fear due to the cortisol and adrenaline overload.  
 

I HAVE NEVER HAD A WINDOW since detox 21 months ago! It’s very hard to endure and hard to  think that I’m healing when I see and feel no evidence if it, and get new symptoms so late in withdrawal, but apparently new symptoms can happen anytime. 
 

I have spoken to Baylissa multiple times and she has helped over 13,000 people and still does today. She advises that the anecdotal evidence she has accrued and studied is that everyone does heal.  Some take much longer. Some aren’t lucky enough to get a window, some wake up healed after months of suffering. I have questioned many times if I am ever going to heal because I am feeling much worse than my first year.

Each day is a battlefield of the mind and body. But our CNS is trying to get back to homeostasis. It’s so non linear that it is easy to loose hope. I have lost hope often as the pain is severe, but somehow I get through the day, praying that the next day will be better.  
 

That “Better” day has still not come, but I have to try and keep believing that I will heal. Others before us have healed.  There are many people with different stories, dna, history, other conditions that all factor in.  I wish we coukd know how long it’s going to take but it’s impossible to know.  
 

Perhaps you might want to reach out to Baylissa and have a session with her to ease your mind about healing. She also has a website with support and you can join the support group to access webinars and live zoom sessions. It has been very encouraging and informative. 

I hope you start to feeling better but you are still in the early months and things can change quickly; symptoms can drop and new ones arrive. You can also wake up healed. Anything is possible.

Baylissa advises that severity of symptoms is not an indication of duration.  I hope we all heal soon. This has crushed me, but I have to keep trusting. 
Take good care!
 

Please can you tell me how to contact Baylissa?

[[jo...]]

On 07/01/2024 at 18:12, [[I...] said:

Please can you tell me how to contact Baylissa?

Hi there, 

You can book a session with Baylissa at this link: 

https://baylissa.com/sessions/

She also has a member group that you can join which has multiple resources and forum. Found here: 

https://compassionfocusedhealing.com/

Hope this helps. Take good care.