Can you all share symptoms which no one else discusses?

Tonight was bad, Feels like symptoms keep getting worse and worse especially after eating. My biggest fear are the symptoms I'm so worry they're going to lead to disability, I could care less about death at this point. It's the disability aspect that frightens me. This process is bad there's so many frustrating and terrifying concepts that goes through my head such as the duration, having nightmares that I'll be like this forever, not knowing if this is benzo related or not is killing me. I'm constantly looking for others who may have kinda the same symptoms and I keep running into the same problem.

1) Everyone's symptoms are very similar, very rarely do I run into someone who kinda describes what I have making me feel like maybe I do have a degenative neurological condition

2) I seem to be a worse case. Now I've tried my hardest to stay away from this thought. I don't like thinking of my sufferings as the worst when so many others are in the same spot but the more I look around the more I realize how truly alone I am in this, barely anyone has what I'm feeling, and I can tell I'm a worse case because when I ask about my symptoms I'm lucky to get maybe 5 replies and 100+ views which tells me that folks are looking at my symptoms but no one wants to know that symptoms like these exist.

3) one thing that's starting to become an annoyance is that it seems like everyone is battling for suffering rights, if you ask about a symptom you will get at least one person who says "Oh yeah I had that" and they just blow past that like it was nothing and no where in their posts is there any mention of said symptom.

I just don't think I can go on. "It's going to get better" keeps being replaced by members who keep saying "I've been off for 5+ years and I'm still in hell", and I know you should never listen to horror stories but they become very convincing and honestly I don't know if I have more then 4 months left in me. My neurological symptoms keep progressing badly, if it's visual it's my left side... It started off weak, then tight and now its floppy and wobbly. I feel like I'm slowly going paralyzed and there's nothing I can do about it. 21 months Cold turkey Ativan and this is just too much now. Symptoms keep getting more intense and anyone whosuread my comments fully understands what I've gone through. Every 3 days or so I get hit bad and with a morphed symptom. I just. I don't think I'm one of the people who's suppose to survive this and what's crazy is that me saying that doesn't mean anything... Literally everyone has already said those lines before

If I'm in a wave, moving, eating... It all seems to make whatever symptom I'm dealing with 19 times worse. When does a common symptom become too much for a person to handle? I'm dealing with now 9 symptoms all at once every single day that morphs the longer these waves keep in and I'm terrified of food now which is ridiculous

I haven’t read your earlier post, but I did want to respond to you with some encouragement. I,too, have been really frustrated when people respond with, ‘Had that too’. Period. Or, ‘It gets better!’. Period. Like-seriously, please explain in vivid detail exactly how you coped with said symptoms and, seriously: HOW, am I going to get BETTER?!?!?!?! I.Want.A.Playbook. Actually, if you could break it down, hour by hour, then I am absolutely sure I will feel better!!

Right?

Well, unfortunately, the reason I can’t read your earlier posts is because it will trigger me. And the reason I cannot give you details about exactly ‘how’ it gets better is because I honestly don’t remember these past months-THANK GOD!

Yet, even though I am definitely not in the clear, I AM getting better ❤️‍🩹! Every night, especially after an absolutely horrific day, I do not get discouraged. I tell myself 100 times or more that tomorrow will be better. Don’t care if it isn’t, I just pray and hope and wish it to be. Over and over and over.

I also refuse to read the horror stories as they are NOT my story. They’re less then 1%. Much much less.

Listen, this is an FDA approved drug, taken by millions and millions of people-supposedly 17% of the adult population in the US. If you did not get better-eventually-it would be off the market.

You simply have to find hope-somewhere, anywhere. You have to BELIEVE in your journey-nobody else’s. YOU, only you, can do this.

I too have been completely alone in this nightmare. I don’t know how anyone works outside of the home either, but that’s their story-not mine.

This is not going to defeat me or take me down. And it won’t you either. BELIEVE! Fake it till you make it; listen to your body and rest, eat what you can. Give yourself a break, give yourself grace. Breathe. Just 1 moment, 1 hour, 1 day at a time!!! 🙏🙏🙏

One of the hardest truths of this experience that I realized some time ago, is that even here on this board, or with the closest most compassionate family members, we're never going to get full understanding. We're never gona get through to people exactly how horrifically awful this is. even to others here. It is an extraordinarily lonely experience for that. I could drone on for many pages about the absolute horror I went through when i was so toxic and phobic to everything I was shaking and dying feeling

but I realized Ill NEVER get full understanding of that, so part of this journey, is that we have to rectify in our minds that no one will ever totally understand the level of hell each individual has gone through. a part of me feels lost at sea for that, and when i look back on this last 6-7 years in total now that ive struggled form the time of tolerance to now, I know a good portion of my horrors will only ever be mine to understand.

some of this stuff is flat out impossible to describe, too, and even the most articulate words dont do justice to some of these feelings. its why many folks think we're just describing classic anxiety symptoms when its like, no, you dont get it, its waaaayyyy beyond that. but the lack of experience causes a lack of empathy.

i can never totally describe the 'phobic to everything' feeling, the shaking out of my skin just having a conversation with someone, the flight or fight mechanism being 10000% more sensitive than normal and making every single interaction a living hell for those years i endured that.

shifting gears a little - you mentioned the eating thing, eating made me super dizzy, almost passing out, heart racing, symptoms amplified, it was bad the first hour or two after dinner, then slowly subsided. one trick i learned with that is to 'eat gently' for lack of a better term. I realized i was gulping food down, and not really breathing properly, i was holding my breath to eat, then swallowing 'hard' - was sorta hyperventilating myself without even realizing it, and that contributed to the sensations. i also made sure to drink at least half a glass of water before i ate, and drink water during the meal, which seemed to soften the blow a little bit.

i know it sounds silly, but when you eat next time, try doing it 'gently,' slowly, chew your food more, but dont chomp on it an scarf it down. take it easy. not saying youre not, but i was eating like a caveman lol, and it contributed to my discomfort greatly. these habits wont be a cure for this, the symptoms will probably still hit ya for a time, but it COULD alleviate the strongest of it somewhat... (and for as bad a case of benzo awfulness as ive endured, this eating thing has subsided a great deal, its definitely not as awful as it was two years ago for me)

I sympathize with this post, i at least somewhat know what you mean, we are the most silent and lonely warriors, and we just dont get the understanding that is deserved for this level of hell, even from others in similar situations.

i think a lot of people here DO understand more than they let on, we're just all so desperate here to vent our own experiences, so a lot of us are sorta self involved, but without meaning to be rude, its just a desperate cry out to the universe here, and sometimes folks come across as dispassionate when I dont think they intend to.

wow i typed alot lol, i dont mean at all to be preachy, and man i have lot of the same feelings as you on this. I so hope you do get some relief. i will say im protracted and a particularly bad case, and while its still very difficult, a lot of the absolute worst sensations HAVE subsided enough to where im not in constant 911 mode as i used to call it.

peace!

Another idea is to Google Benzo Coaching-I’ve done it a lot. There’s 1 woman who offers group sessions 3 times/week at a reasonable cost and individual consultation for a larger fee. She has a blog and other resources as well.

I’m keeping that in my back pocket! Knowing that option is out there for me gives me some relief. 🙏

One of the hardest truths of this experience that I realized some time ago, is that even here on this board, or with the closest most compassionate family members, we're never going to get full understanding. We're never gona get through to people exactly how horrifically awful this is. even to others here. It is an extraordinarily lonely experience for that. I could drone on for many pages about the absolute horror I went through when i was so toxic and phobic to everything I was shaking and dying feeling

 

but I realized Ill NEVER get full understanding of that, so part of this journey, is that we have to rectify in our minds that no one will ever totally understand the level of hell each individual has gone through. a part of me feels lost at sea for that, and when i look back on this last 6-7 years in total now that ive struggled form the time of tolerance to now, I know a good portion of my horrors will only ever be mine to understand.

 

some of this stuff is flat out impossible to describe, too, and even the most articulate words dont do justice to some of these feelings. its why many folks think we're just describing classic anxiety symptoms when its like, no, you dont get it, its waaaayyyy beyond that. but the lack of experience causes a lack of empathy.

 

i can never totally describe the 'phobic to everything' feeling, the shaking out of my skin just having a conversation with someone, the flight or fight mechanism being 10000% more sensitive than normal and making every single interaction a living hell for those years i endured that.

 

shifting gears a little - you mentioned the eating thing, eating made me super dizzy, almost passing out, heart racing, symptoms amplified, it was bad the first hour or two after dinner, then slowly subsided. one trick i learned with that is to 'eat gently' for lack of a better term. I realized i was gulping food down, and not really breathing properly, i was holding my breath to eat, then swallowing 'hard' - was sorta hyperventilating myself without even realizing it, and that contributed to the sensations. i also made sure to drink at least half a glass of water before i ate, and drink water during the meal, which seemed to soften the blow a little bit.

 

i know it sounds silly, but when you eat next time, try doing it 'gently,' slowly, chew your food more, but dont chomp on it an scarf it down. take it easy. not saying youre not, but i was eating like a caveman lol, and it contributed to my discomfort greatly. these habits wont be a cure for this, the symptoms will probably still hit ya for a time, but it COULD alleviate the strongest of it somewhat... (and for as bad a case of benzo awfulness as ive endured, this eating thing has subsided a great deal, its definitely not as awful as it was two years ago for me)

 

I sympathize with this post, i at least somewhat know what you mean, we are the most silent and lonely warriors, and we just dont get the understanding that is deserved for this level of hell, even from others in similar situations.

 

i think a lot of people here DO understand more than they let on, we're just all so desperate here to vent our own experiences, so a lot of us are sorta self involved, but without meaning to be rude, its just a desperate cry out to the universe here, and sometimes folks come across as dispassionate when I dont think they intend to.

 

wow i typed alot lol, i dont mean at all to be preachy, and man i have lot of the same feelings as you on this. I so hope you do get some relief. i will say im protracted and a particularly bad case, and while its still very difficult, a lot of the absolute worst sensations HAVE subsided enough to where im not in constant 911 mode as i used to call it.

 

peace!

Thank you for the heartfelt, and excellent post.

Peace!

I haven’t read your earlier post, but I did want to respond to you with some encouragement. I,too, have been really frustrated when people respond with, ‘Had that too’. Period. Or, ‘It gets better!’. Period. Like-seriously, please explain in vivid detail exactly how you coped with said symptoms and, seriously: HOW, am I going to get BETTER?!?!?!?! I.Want.A.Playbook. Actually, if you could break it down, hour by hour, then I am absolutely sure I will feel better!!

Right?

Well, unfortunately, the reason I can’t read your earlier posts is because it will trigger me. And the reason I cannot give you details about exactly ‘how’ it gets better is because I honestly don’t remember these past months-THANK GOD!

Yet, even though I am definitely not in the clear, I AM getting better ❤️‍🩹! Every night, especially after an absolutely horrific day, I do not get discouraged. I tell myself 100 times or more that tomorrow will be better. Don’t care if it isn’t, I just pray and hope and wish it to be. Over and over and over.

I also refuse to read the horror stories as they are NOT my story. They’re less then 1%. Much much less.

Listen, this is an FDA approved drug, taken by millions and millions of people-supposedly 17% of the adult population in the US. If you did not get better-eventually-it would be off the market.

You simply have to find hope-somewhere, anywhere. You have to BELIEVE in your journey-nobody else’s. YOU, only you, can do this.

I too have been completely alone in this nightmare. I don’t know how anyone works outside of the home either, but that’s their story-not mine.

This is not going to defeat me or take me down. And it won’t you either. BELIEVE! Fake it till you make it; listen to your body and rest, eat what you can. Give yourself a break, give yourself grace. Breathe. Just 1 moment, 1 hour, 1 day at a time!!! 🙏🙏🙏

Benzo damage is not provable. Many people are severely damaged but when they try to get help they are dismissed as delusional or mentally ill . Nothing is ever blamed on the pills. It's always the sufferers fault.