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Long Haulers

To those who do not seem to heal :(


[Ma...]

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[Ma...]

 

I Just had a discussion with baylissa as she blocked me from her page when i said not everyone heals. 

She asked me who is still suffering a lot after years and years. 

I told her i can give you a list of people more than 5 years off who are not even close to healing. Ofcourse she says, well than IT can happen in year 6-7-8-9-10,

But come on, is that true?

Please let me know if you allow me to put you in that list and respond .

I am not here focussing on the not healing because i am negative, i Just want to have insight, 

 

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[de...]

@[Ma...]  Hey there!  Those people that you mention that are 5 years off, do you know them personally?   Do you know the totality of their situation?

It is important when you make statements like "not everyone heals" that you back that up with data.   I am sure there are people that are not healed at five years off, but I would be interested more in their specific situation.  

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[Sc...]

I'm 11 years off and left with permanent neurological injuries.. Neurotoxicity.

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[de...]

@[Sc...] I am so sorry you are still struggling.   Can you tell me a little bit more about your injuries/symptoms.   Also, in an effort to understand people who have suffered for so many years, can you tell me your history with benzos?  

I cannot imagine what you have dealt with all these years.   

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[mo...]

I was given alprazolam for anxiety about 14 years ago and tapered off of it for 2+ years after taking it about one year.  It has been 9.5 years since my last dose and I have never been healed in fact right now I feel like I am in the first stage again.  My symptoms are mostly physical but very debilitating.  So, I do agree that "maybe" some people do not heal if that means being back to where they were before taking the drug.

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[Sp...]

I am 10+ years since I have been off benzoes and far from healing. My symptoms are almost neurological. No depression, no anxiety, cognitive issues, and terrible headaches. I have doubts I will ever recover.

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

@[Ma...]  Hey there!  Those people that you mention that are 5 years off, do you know them personally?   Do you know the totality of their situation?

It is important when you make statements like "not everyone heals" that you back that up with data.   I am sure there are people that are not healed at five years off, but I would be interested more in their specific situation.  

That's up to you to Discover the people who are in this. I cannot tell you everything as i have spoken to hundreds that are not healed and a LOT who feel like their LIFE is stolen. Even if thise who took Them only a couple of weeks / months. 

And they have nothing underlying going on the dont drink alcohol and dont Take other drugs 

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[Sc...]
29 minutes ago, [[d...] said:

@[Sc...] I am so sorry you are still struggling.   Can you tell me a little bit more about your injuries/symptoms.   Also, in an effort to understand people who have suffered for so many years, can you tell me your history with benzos?  

I cannot imagine what you have dealt with all these years.   

I have muscle tension on my head, neck and back. My head feels stiff/tight/heavy it drains my energy and makes me feel uncomfortable. My vision is blurry, my muscles are weak, my nerves are fried. I feel exhausted from the neurotoxicity i took for 20 years. I been on benzos off and on since 1991, was taking them daily from 2006 - 2013 as well as AD"s, drugs i did not need.

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[Sc...]
15 minutes ago, [[S...] said:

I am 10+ years since I have been off benzoes and far from healing. My symptoms are almost neurological. No depression, no anxiety, cognitive issues, and terrible headaches. I have doubts I will ever recover.

I am same as you. Constant tight muscles all over my head. It gets so bad it affects my breathing. Feels like some type of myopathy. I also have no anxiety no depression, just neurological. 

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[Ne...]

I'm 9 years June 1.  Although I have had months long windows of healing, my severe setbacks in between are acute.  Right now I'm in my 12th month of a setback and have ALL the mental torture symptoms, constant anxiety, severe, severe depression, can't feel joy or pleasure EVER, have to force feed everyday and am constantly sick with flu like symptoms and super sensitive to smells and sounds, constant internal tremors and severe weakness in body along with constant tinnitus.  I feel totally alone in the world and feel like I am constantly gut-wrenching grieving.  I took a total of 85 pills from start to end of taper and never had taken any meds before...rarely even an antibiotic or aspirin.

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[Ma...]
2 hours ago, [[S...] said:

I'm 11 years off and left with permanent neurological injuries.. Neurotoxicity.

If you were on them for so long time it’s not neurotoxicity in that case u would have been better off without them and improving each year. If these symptoms started whitening tolerance or after taper it’s more likely neurons that just don’t work anymore 

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[Ma...]
2 hours ago, [[S...] said:

I'm 11 years off and left with permanent neurological injuries.. Neurotoxicity.

Have you tried stuff like neuropeptiden for brain injuries?

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[Ma...]
3 minutes ago, [[M...] said:

@[Ma...] You’ve spoken to 100’s of people not healed? In what timeframe?

All under 6 years I don’t count.  I mean hundreds between 6-10 years off…😓😭

I’m so sad cause I know after almost 28 months of severe weakness and Dystonia / stiffness muscle contractions, I will not heal. Even if I would heal 50% I don’t have a life. Can walk 20 meters and all muscles turn into stone and lost all sensations of having a body with organs, I am only eyes

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[Sc...]
2 hours ago, [[M...] said:

If you were on them for so long time it’s not neurotoxicity in that case u would have been better off without them and improving each year. If these symptoms started whitening tolerance or after taper it’s more likely neurons that just don’t work anymore 

Long term use of any of these drugs causes neurotoxicity. Once the drug is removed the neurotoxic damage remains. I felt horrible taking them and coming off them. Took them too long. If it was a mild problem it would have resolved in 1 -2 years.

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[Sc...]
2 hours ago, [[M...] said:

Have you tried stuff like neuropeptiden for brain injuries?

I have not, i have tried many vitamins over the years and i have good knowledge of them and it did not cure my neurological problem. I dont believe any vitamin can reverse a sensitized CNS.

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[Ma...]
7 hours ago, [[S...] said:

Long term use of any of these drugs causes neurotoxicity. Once the drug is removed the neurotoxic damage remains. I felt horrible taking them and coming off them. Took them too long. If it was a mild problem it would have resolved in 1 -2 years.

That's true..:( so sorry Scooby. 

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[Ma...]
33 minutes ago, [[t...] said:

Personally, I think Baylissa is full of it. 

Full of What ? Shit?

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[Ma...]

At the same time there was a woman in the aka groups she has 9 years akathasia from 2 weeks of oxazepam. 2 weeks. God

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[ti...]
37 minutes ago, [[M...] said:

Full of What ? Shit?

Yeah. I think she believes what she's telling people but I also think she's wrong. Not everyone heals. Some people have problems many, many years off. Hearing "But Baylissa says we all heal 100%!!!" over and over to any mention of facts is tiring. And does she even say we all heal 100%? I'm not even sure but I hear it parroted on these boards all the time. I get why people cling to this but as a protracted person I find it kind of irritating. 

I've also heard her claim that she's never heard of anyone being permanently damaged by antidepressants, which is ridiculous. Post SSRI sexual dysfunction is a real permanent disorder. Tardive dyskinesia is another. I find it hard to take her seriously because of these claims. I don't know, maybe i'm just grumpy. It's 4:00 in the morning here and I'm wide awake due to horrible nerve pain thanks to my injured brain.

 

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[lo...]
On 06/03/2024 at 11:03, [[M...] said:

I Just had a discussion with baylissa as she blocked me from her page when i said not everyone heals. 

She asked me who is still suffering a lot after years and years. 

I told her i can give you a list of people more than 5 years off who are not even close to healing. Ofcourse she says, well than IT can happen in year 6-7-8-9-10,

But come on, is that true?

Please let me know if you allow me to put you in that list and respond .

I am not here focussing on the not healing because i am negative, i Just want to have insight, 

I am sorry you have been blocked.  I used to have this same problem with the statement that "everyone heals".  I left support groups because of this insistence that we agree with this statement.  I am nearly 11 years off now.  The withdrawal from benzos was horrendous for me.   I continue to battle to try to recover.   It is a serious brain injury and not everyone is going to be able to get back to a state of good health.  I make the best of my situation despite all the limitations on my life now.  I would say that the majority see improvements over time but that is a very different statement to "everyone heals".  I have been very much weakened by this whole process, unable to cope with stress now, panic at the slightest thing, unable to cope, have been traumatised. 

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[le...]

I think you have been been blocked as she takes ter her incomie fro claiming wvweyone one heals, truth is one one knows. I been off zopiclone  :> over &5 Yeats bur dud take anti depressants tro try to help stopped  4 years ago. They made things wordse. I don’t personally think I will recover

 

 

 

 

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[aa...]
18 hours ago, [[M...] said:

All under 6 years I don’t count.  I mean hundreds between 6-10 years off…😓😭

I’m so sad cause I know after almost 28 months of severe weakness and Dystonia / stiffness muscle contractions, I will not heal. Even if I would heal 50% I don’t have a life. Can walk 20 meters and all muscles turn into stone and lost all sensations of having a body with organs, I am only eyes

Hi mascha,

Unfortunately I feel everything you say I am exactly having the same stuff. Last one month infact I am worse.  Dystonia is the worse symptom for people severely damaged lik us. Most don't heal even at 6 to 10 years.  I am.fed up.  It's misaligned my spine n chiro told me I ve scoliosis. It's totally deformed me . I use to be able to walk a bit lately i can't even sit ir stand. I can't take this 😫 😭 

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[Ga...]

Leann, can you edit your remarks as they are hard to follow, please!

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