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

[[Lo...]]

Hello all. I am here to explain the horrific ordeal I’ve been through, and may not make it through. 
 

This all began in 2016. We had a horrible event take place that nearly took my father’s life, and a series of stressful events after that ruined my mental health, at 30 years old. After six months of agonizing stress, insomnia and constant panic, I saw a psychiatrist for the first time since I was a teenager (ADHD diagnosed at 6 y/o, treated until 16 when I learned to cope). I was diagnosed with PTSD. I was placed on 75mg Effexor XR and 1MG Clonazepam as needed, up to 3x a day. I never needed more than .5mg, usually .25 would stop the panic and thought loops and allow me to function. I was never told that this medication should only be used short term. The next 6 years followed this routine until March, 2022, when I started feeling extremely sick all the time and noticed that the medication was the cause of it. It got so bad that I had to step away from the company I built and quit working. I tapered off both meds and was medication-free by winter. I was placed back on Adderall for ADHD, which seemed to be a life saver during the withdrawal. I felt the best I had in all the years I’d been fighting this horrible illness. Mind you, prior to all this happening in 2016, I was a happy, energetic athlete (motocross) and full of life. Good job, happy marriage, living life to the fullest, and hadn’t taken a pill of any kind since I was 16y old. 

Enter January 2023. After a bad nightmare and panicked awakening, it was like I was right back in 2016. Severe anxiety, panic, intrusive thoughts worse than ever before. Adderall was only helping until it wore off, and then I couldn’t sleep, felt like I was losing my mind. I went back to my GP and was placed back on Clonazepam. I was now taking 1MG every night just to fall asleep for work the next day. Constant intrusive thoughts, terror, OCD-like symptoms that just would not stop. This continued to get worse and worse over the next few months. In May, I noticed something horrible happening to me: my skin on my hands/arms started to look wrinkled, thin, and I started growing hair in places I’ve never grown hair, like my inner forearms and stomach/chest. I have blonde hair and have always been very lightly haired, almost like I got stuck in my teens (male). I stopped taking the Adderall, as it was the only thing that changed in my life and I assumed it was causing some type of metabolic issue/damage to my body. I also started tapering off the Clonazepam again, and I’m still working on that, down to .25 in the am only currently. However, things have not improved. Prior to this, I was healthy, looked 15y younger than my biological age, and have never had a single health issue outside a cold. Since May, my hair texture has changed, literally lost all my blonde hair, and it’s all dark/thin/frail looking, even on my head. My facial hair is the same. The skin issue I noticed on my hands and arms has spread to my entire body. I have a cystic-acne like breakout on my chest and stomach, and in some other places sporadically. Wounds no longer heal in less than weeks at a time. It’s like my body has aged 30 years in 8 months. I have seen every specialist in the book, trying to figure out what’s wrong with me. I’ve lost sensation in my skin, almost numb head to toe. I have tinnitus so loud that it’s making me suicidal. All my blood work/panels/etc come back with no significant issues. I’ve had a brain MRI, multiple CT scans, the whole “nine yards”. Nobody can figure out what is wrong with me, and I’m losing my mind over this. I feel like I’m permanently altered/ruined, and I can’t pin it to the Adderall, so the only thing left is the Clonazepam/Effexor cessation, which doesn’t make sense. I’ve never read another person having something this bad happen to their physiology because of cessation. Can anyone shed light on this?! I’ve experienced some of the symptoms of benzo withdrawal during this nightmare, for sure, but this seems extreme. It’s literally horrifying and seemingly irreversible. I’m losing hope. Prayer, my family and wife are the only things keeping me hopeful and from doing something to end this suffering. Calling this a “nightmare” would be an understatement! Please, anyone, if you can, tell me I’m wrong! I don’t understand… 😞 

Edited December 31, 2023 by [Lo...]

[[de...]]

Unfortunately, it sounds like you are experiencing symptoms of benzo withdrawal.  There are 100's of potential symptoms, and they can be very intense at times.  These symptoms, while very uncomfortable, are a sign that your brain is trying to get back to functioning as it should without the medication.  You will continue to have symptoms, but the intensity will wax and wane.   

When did you stop the Effexor?   Effexor is notorious for having really difficult withdrawal symptoms.   When did you start the benzo taper?    Also, stopping the Aderall is probably adding to your difficulties.  Generally, we recommend tapering one medication at a time.   

Are you in the care of a psychiatrist?

I can assure you that you are not permanently "damaged".   You will continue to heal and your brain will begin to function normally.

Please keep reaching out here and let us support you through this process.

[[Lo...]]

Thank you for your reply!  stopped the Effexor and Clonazepam during the same timeframe over the spring/summer/fall of 2022. I only took the Adderall from late 2022 until May 2023. I quit Adderall cold turkey after 11y of use at 16y old and didn’t have a single issue. The skin and hair changes all happened from March to May 2023. It just seems unreal that this kind of drastic change could happen so fast. I was completely healthy and had “perfect” skin and hair until, seeming overnight, I didn’t. 

[[Lo...]]

Everyone: I don’t want anyone to think this is about vanity or that I’m downplaying anyone else’s more serious issues. I just don’t understand how this is possible. I’ve also lost most of my sense of smell and taste, my memory is shot, the list is LONG. Had I known this was going to be the outcome of taking a medication that was supposed to help me, which, it DID initially, I would’ve never taken it and just dealt with the anxiety until it inevitably would’ve passed. I was naive and too trusting of doctors and didn’t do my own research because of that, and now I’m paying for it. This is hell. I literally have lost interest in living. It’s like I’m trapped in a torture device that there is no way to escape from. I always place my faith in the Lord and I almost feel like I’m being punished for something, and that he’s not responding to my pleas for help. Lord, forgive me, I just feel alone and trapped, like so many I’ve read about here. 

[[wi...]]

Same things here with the skin and hair, but my hair thinned and fell out in various places.

i was on multiple psych meds which included adderall.

you sound very capable and intelligent.

im so glad you have a wife and family who support you.

You’re the first person to validate the wrinkled skin and hair situation.

from handsome guy to wrinkled and hairless overnight… that’s me. Skin droopy and saggy.

 

 

 

 

[[Di...]]

"too trusting of doctors" is your only crime

I worked as a pharmacy assistant in the 70s and saw 1st hand the dangers that can come from doctors

A young boy had some trouble as a bed wetter and the doctor in his wisdom thought that a dose late in the day of amphetamine would help keep him half awake at night and able to reach the bathroom, brilliant!

Fast forward 10 years and no one thought to stop the speed. This resulted in one very messed up young man with no fault of his own

[[Lo...]]

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

Same things here with the skin and hair, but my hair thinned and fell out in various places.

i was on multiple psych meds which included adderall.

you sound very capable and intelligent.

im so glad you have a wife and family who support you.

You’re the first person to validate the wrinkled skin and hair situation.

from handsome guy to wrinkled and hairless overnight… that’s me. Skin droopy and saggy.

I’m so sorry! I don’t like that it has happened to anyone else either, doesn’t make me feel a bit better! This is crazy and unbelievable. Are you off the medication now, and is it improving?! 

[[Di...]]

skin droopy and saggy......

 

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

[[wi...]]

Yep off medication 8 months after a grueling 4 year taper.

other symptoms improved but not the skin/hair. 

[[Lo...]]

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

"too trusting of doctors" is your only crime

I worked as a pharmacy assistant in the 70s and saw 1st hand the dangers that can come from doctors

A young boy had some trouble as a bed wetter and the doctor in his wisdom thought that a dose late in the day of amphetamine would help keep him half awake at night and able to reach the bathroom, brilliant!

Fast forward 10 years and no one thought to stop the speed. This resulted in one very messed up young man with no fault of his own

That is horrible. I’m sorry to hear that and pray for the young man. I will never trust a doctor again after what I’m going through, IF I don’t lose my mind, IF I make it through it. I cannot fathom living the rest of my life like this, with a damaged body that prevents me from living. I do a lot of physical work and can’t even do maintenance on our property now because if I get cut or scraped, which happens a lot doing this kind of work, it doesn’t heal. Angry is an understatement: I feel like my life has been taken from me while still able to breathe. This is literally worse than any nightmare I could ever imagine. 

[[Lo...]]

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

skin droopy and saggy......

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

My skin isn’t drooping, but is soft and the texture is like an elderly person’s when pinched or pushed on. Not double jointed. I’ve researched EDS, that’s not what’s going on with me. Also a bunch of “age spots” appeared literally overnight on my hands and arms (seb. keratosis), which I literally didn’t have a single one of at the beginning of this year. 

[[wi...]]

@[Lo...]

Yes, happened overnight.

hows your energy levels? Are you easily fatigued?

[[Lo...]]

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

@[Lo...]

Yes, happened overnight.

hows your energy levels? Are you easily fatigued?

If I wasn’t depressed about this, my energy level would be fine. ADHD (excess) energy is still there, I just don’t have any motivation at all and spend 99% of my time obsessing over what’s happened to me. I know that’s not healthy, but I simply cannot focus on anything else because knowing this saps my drive right out of me. 

[[wi...]]

I’m sorry but I can’t remember if you said you’re still on any meds? 

[[Lo...]]

4 minutes ago, [[w...] said:

I’m sorry but I can’t remember if you said you’re still on any meds? 

Nothing but .25mg of the Clonazepam poison, which I’m about to jump from soon. I’m afraid of the continuing damage it’s causing. I wish I’d have just stayed off of it and ridden out the wave at the beginning of the year, and never reinstated. 

[[Ma...]]

This may sound pedantic, but are you hydrating? Like, constantly? Have you had blood tests for hormones, vitamins especially your B’s, potassium, iron?

I am so very sorry to hear all of this. I’m sure many members will continue to chime in, lend support and help you through.

Right now your only job is to make it through the day, the hour, the moment. Just keep going, okay? 🙏

[[Ma...]]

Please don’t jump off .25-it’s too much, too quick. Someone here, maybe Collin, will help you with the correct taper…

[[...]]

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

Nothing but .25mg of the Clonazepam poison, which I’m about to jump from soon. I’m afraid of the continuing damage it’s causing. I wish I’d have just stayed off of it and ridden out the wave at the beginning of the year, and never reinstated. 

@[Lo...], you know i'm sure much of what is happening to you is due to clonazepam and the rest goes to other drugs.  I got ill while taking benzo and no doctors could say what was wrong. I did a lot of tests and they were ok but i was hardly alive then. My symptoms were different but i think they can be anything when benso is responsible. The skin and hair issues have also been experienced by me but at least it isn't painful that much.

Now i'm 9 months off and i feel really better. In fact i got better a week before i finished my tapering. I'm sooo glad i did it!

Wish you good luck) You are doing the right thing.

Edited December 31, 2023 by [...]

[[Lo...]]

33 minutes ago, [[M...] said:

This may sound pedantic, but are you hydrating? Like, constantly? Have you had blood tests for hormones, vitamins especially your B’s, potassium, iron?

I am so very sorry to hear all of this. I’m sure many members will continue to chime in, lend support and help you through.

Right now your only job is to make it through the day, the hour, the moment. Just keep going, okay? 🙏

I drink a lot of water. I always have drank a lot of water, all day, every day. I thought this was dehydration at first also, until I watched it slowly spread to my whole body over a few months time. Then, the random excess hair growing and change of texture on my entire body sealed the fear that it’s not something that is going to change back. It’s like some type of DNA/cellular level change took place. I literally don’t feel or look like the same person I did a year ago. It makes it hard to think “things will get better”, this is like a horror-film/sci-fi experiment come to life. If it wasn’t bad enough that I had anxiety before, I don’t think I’ll ever NOT have it now. I got off the meds because I was over my trauma. Now, this is my trauma and it’s worse than the original trauma by far. 

[[Lo...]]

39 minutes ago, [[M...] said:

Please don’t jump off .25-it’s too much, too quick. Someone here, maybe Collin, will help you with the correct taper…

Honestly, I don’t think it’s doing anything anymore. I don’t feel it when I take it, and I don’t even feel it when I don’t take it for days at a time unless I take a high (1mg) dose.

[[Ma...]]

I hear you, I really do. Again, blood work for vitamin deficiency and hormones?

If I remember correctly, benzos wreak havoc on your hormones, so if you get those blood tests maybe you can at least get some information. And with that information you can proceed with a clearer direction.

And those vitamins could also help…

[[Na...]]

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

skin droopy and saggy......

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

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.

[[Lo...]]

7 minutes ago, [[M...] said:

I hear you, I really do. Again, blood work for vitamin deficiency and hormones?

If I remember correctly, benzos wreak havoc on your hormones, so if you get those blood tests maybe you can at least get some information. And with that information you can proceed with a clearer direction.

And those vitamins could also help…

I’ve been trying to get into an endocrinologist for months and they said they won’t see me because my thyroid tests don’t show an issue… smh. 

[[Na...]]

It's very possible that this is a protracted issue from your benzo use, but no one can say for sure. Sounds like you've been pretty thoroughly checked over by doctors for other possible causes so that's good.

I don't know why, but for some people there seems to be a delay (frequently 6 months - 1 yr) before their worst post benzo symptoms hit. It was that way for me. I mean, it was really bad as I got to the end of my taper and quit, but things sort of stabilized at a certain level of discomfort after a month or so and held steady there. Then at right around the 1 year mark things really got worse. The pain and constant muscle spasms I had got much much worse. I think it might be the effects of the constant stress from the issues you get post withdrawal all start to pile up and take their toll over time. In any case, I really went off a cliff right at the 1 year mark.

How's your mental state at the moment?

[[Ma...]]

Don’t take no for an answer. Just do.not.

My memory has gone to hell and I was told I could not get an appointment with a Neuropsychologist for the 7 hour test until JUNE. Mind you, at this point I has lost all social graces so simply appealed to the receptionist’s humanity and while (on cue) crying, said: I will be in a nursing home by then, isn’t there something blah blah blah…I have the test January 9. 
You have to be your own advocate so kick and scream-cry-if necessary and Get.That.Appointment!