Late, but here is my story. I think I’m dying.

[[Bu...]]

Hey @[Lo...],

I am so sorry for everything that has happened to you.  While I don't have exactly the same symptoms you do, I have some similar experience.  I was off clonazepam for a year and then reinstated.  When I did, my hair texture changed from very straight to very frizzy, sort of curly-way.  It also thinned dramatically and became very brittle.  It also began shedding and still is.  When the pharmacy changed brands for the clonazepam, I also started getting very deep, cystic-like acne on my face, neck and chest.  I have been off over four months now and the acne in particular is starting to easy up.  It still happens but it is very sporadic instead of constant.  I am still waiting on the hair to sort out.  During my taper I also developed random bruising.  Bruises about the size of a quarter would just show up on my arms and legs for no reason.  It stopped about a month before I jumped off, but last week started up again.  Although, this time they are much smaller, so I think this is progress.  I also felt like I was dying.  Such changes are so dramatic, it seems like there must be something irreversibly wrong, but now I don't think this is true.  I think this med really just messes us up, but we will heal eventually.

[[Di...]]

53 minutes ago, [[N...] said:

Ehlers Danlos is a congenital condition. He would have had it all his life, it wouldn't suddenly appear. My brother was born with it and it was obvious from birth.

I know someone who has it and it was the milder form of the disease and he never got a DX until his 40....congenital or not it is not always obvious

[[Di...]]

https://www.ehlers-danlos.org/what-is-eds/information-on-eds/diagnosis/

[[Lo...]]

12 minutes ago, [[D...] said:

I know someone who has it and it was the milder form of the disease and he never got a DX until his 40....congenital or not it is not always obvious

I’ve always had very tough, tight skin and have been a mechanic/engineer for years, working with my hands and getting lacerations/etc. I can scratch the blood out of my skin with a fingernail now. This is not normal, or anything I’ve experienced in the past. I’ve always healed very fast and been very resistant to damage until the last 8 months when this began. 

[[Di...]]

yeah man.....my last post was really in reply to Mr Arizona.....good luck my friend and hope you get sorted out....the mods on here are well trustworthy

[[St...]]

 

Hi, I’m so sorry you’re going through this. It’s very likely from the Clonazepam though (and therefore something you will heal from!). Some people can apparently quit it with very few issues, while some of us have horrible symptoms. From what I’ve seen, it looks like the average time to heal is around a year to 18 months. It’s sort of a syndrome of itself where your receptors/nervous system resets I guess you could say (after the initial withdrawal). There are literally hundreds of symptoms people have reported, & some are very bizarre.

I’ve definitely noticed changes in my skin & hair, though not nearly as bad as yours. I’ve had perfectly clear skin all my life except for right now – 9 months off Clonazepam – my forehead is totally broken out with some sort of bumps I’ve never had before. I've always looked younger than my age like you, I know what's not normal

Thanks to this whole benzo experience, I’m more freaked out about aging than ever because I never thought life could be this uncomfortable & painful! I don’t think aging itself is really as bad as this though, but yea, you absolutely feel like you’re aging at rapid speed! BUT most people heal. I myself have had about 100 symptoms, & some are completely gone while others still come & go. We’re all here freaking out & thinking they’ll never go away, but they do, it just takes a while.

You are not permanently ruined! This benzo mess just isn’t yet recognized by the medical field. As long as your doctors are clearing you of other medical issues, you probably just need to finish tapering (slowly) & do your best to wait it out. I really hope you do too, because in all likelihood, you’ll start feeling better within 6 months & have a full *healthy* life ahead of you. I’m new to using this site, but I’ve been reading benzo info. for the past 9 months lol – please let me know if you’d like me to spam ya with some good links. There are actual benzo coaches you can hire for support, there are free support groups, books, podcasts…people are realizing benzos have become an issue finally. Hang in there.

 

[[Lo...]]

1 hour ago, [[S...] said:

Hi, I’m so sorry you’re going through this. It’s very likely from the Clonazepam though (and therefore something you will heal from!). Some people can apparently quit it with very few issues, while some of us have horrible symptoms. From what I’ve seen, it looks like the average time to heal is around a year to 18 months. It’s sort of a syndrome of itself where your receptors/nervous system resets I guess you could say (after the initial withdrawal). There are literally hundreds of symptoms people have reported, & some are very bizarre.

I’ve definitely noticed changes in my skin & hair, though not nearly as bad as yours. I’ve had perfectly clear skin all my life except for right now – 9 months off Clonazepam – my forehead is totally broken out with some sort of bumps I’ve never had before. I've always looked younger than my age like you, I know what's not normal

Thanks to this whole benzo experience, I’m more freaked out about aging than ever because I never thought life could be this uncomfortable & painful! I don’t think aging itself is really as bad as this though, but yea, you absolutely feel like you’re aging at rapid speed! BUT most people heal. I myself have had about 100 symptoms, & some are completely gone while others still come & go. We’re all here freaking out & thinking they’ll never go away, but they do, it just takes a while.

You are not permanently ruined! This benzo mess just isn’t yet recognized by the medical field. As long as your doctors are clearing you of other medical issues, you probably just need to finish tapering (slowly) & do your best to wait it out. I really hope you do too, because in all likelihood, you’ll start feeling better within 6 months & have a full *healthy* life ahead of you. I’m new to using this site, but I’ve been reading benzo info. for the past 9 months lol – please let me know if you’d like me to spam ya with some good links. There are actual benzo coaches you can hire for support, there are free support groups, books, podcasts…people are realizing benzos have become an issue finally. Hang in there.

Thank you so much! I’m sorry to hear about your nightmare with this and I pray you find peace with it as well. You’re welcome to message me anytime!!! 🙏 

[[he...]]

On 31/12/2023 at 14:17, [[D...] said:

skin droopy and saggy......

is it elastic like? are you double jointed? have a look at Ehlers Danlos

I was diagnosed with EDS. EDS patients tend to look very youthful which I did too until I quit Clonazepam. 

[[PE...]]

Screaming tinnitus is very common.

Never heard about the skin and aging issues but imagine it could be stress related.

[[he...]]

On 31/12/2023 at 17:10, [[L...] said:

I’ve always had very tough, tight skin and have been a mechanic/engineer for years, working with my hands and getting lacerations/etc. I can scratch the blood out of my skin with a fingernail now. This is not normal, or anything I’ve experienced in the past. I’ve always healed very fast and been very resistant to damage until the last 8 months when this began. 

Have you tried a collagen supplement? Also? Are you overweight? Have you considered sleep apnea? It can cause a lot of weird things. Not trying to give you something else to worry about just something to consider. Please don’t give up. 

[[Lo...]]

On 03/01/2024 at 17:04, [[h...] said:

Have you tried a collagen supplement? Also? Are you overweight? Have you considered sleep apnea? It can cause a lot of weird things. Not trying to give you something else to worry about just something to consider. Please don’t give up. 

I wasted a lot of money on collagen. No change. No, I’ve always been skinny/lean/toned and in “perfect” physical shape, no sleep apnea. I understand. I’m trying not to, but this has me more depressed than I’ve ever been and I’m losing hope. 

[[he...]]

13 hours ago, [[L...] said:

I wasted a lot of money on collagen. No change. No, I’ve always been skinny/lean/toned and in “perfect” physical shape, no sleep apnea. I understand. I’m trying not to, but this has me more depressed than I’ve ever been and I’m losing hope. 

I feel the same way off and on. I discovered through a sleep study that I’m waking up almost 150 times a night without realizing it due to apnea and uncomfortable leg movements. I feel like sleep deprivation and the apnea have a lot to do with it. 

[[he...]]

On 31/12/2023 at 16:58, [[D...] said:

https://www.ehlers-danlos.org/what-is-eds/information-on-eds/diagnosis/

I was diagnosed with hEDS 12/2022 symptoms did not get bad until after I started klonopin and had abdominal surgery. I’m 35 years old and have had low grade symptoms my whole life until above happened.