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Long Haulers

Does ANYONE have the crazy cycling stuff or is it just me???


[Wa...]

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[Wa...]

Hey all.

So...I seem to be the only one I can find like this. I mean, I know there are people that go through phases of healing where they talk about rapid cycling/cycling but this is how it has been for me since the AB setback three years ago. Like, let's pick any horrifying symptom with any varying degree of intensity and throw it out there and that's what I get every day. Sometimes healing is thrown in that mix too but it is mostly just symptoms. Like Russian Roulette. I could post on here at noon every single day and have a different brain with differing degrees of different symptoms. It makes me miss the days that were concrete symptoms of hell but at least then I knew what to expect.

Don't like to complain or be negative but man, it makes me feel like such an outlier...even here :(

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[Ga...]

I am so sorry that your setback has been so long and hard.  I also have been setback several times from antibiotics given for female issues.  Last time was March and I did have an increase in my head symptoms for a few days.  Right now I am dealing with some unpleasant repeating symptoms which are driving me mad now that I am at 50 months post Valium withdrawal.  This has to be the cruelest experience anyone has to go through!  The no rhyme or reason and non-linear path is beyond anything I have ever heard of.  I am going to keep on keeping on as there is no way out but out!

I send you my most fervent healing wishes that you will soon see a break in your constant symptoms!

GG

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[Ma...]
Posted (edited)

I feel like I have whiplash from my cycling symptoms.

Yesterday I was hysterical all.day. Today, buoyant but exhausted.

Afew days ago I was calm walking on a favorite street, the next I was a maniac walking like I’d been shot out of a cannon.

Early this morning, speaking with a neighbor, my entire CNS went bizzerk and I think I lost my vision; 20 minutes ago I had a pleasant conversation with someone with a new dog, although I feel like I present like a child…

The only constant is the extreme sport of night trying to sleep when my body temperature rises, I zone in and out and awake constantly only for 5:30 a.m. to roll around with my body heating up again. Rinse and repeat.

Usually around 8 a.m. I think, okay, what are we dealing with today?

2 years and that is not when my story begins.

You are not alone experiencing this.

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[Wa...]
4 hours ago, [[G...] said:

I am so sorry that your setback has been so long and hard.  I also have been setback several times from antibiotics given for female issues.  Last time was March and I did have an increase in my head symptoms for a few days.  Right now I am dealing with some unpleasant repeating symptoms which are driving me mad now that I am at 50 months post Valium withdrawal.  This has to be the cruelest experience anyone has to go through!  The no rhyme or reason and non-linear path is beyond anything I have ever heard of.  I am going to keep on keeping on as there is no way out but out!

I send you my most fervent healing wishes that you will soon see a break in your constant symptoms!

GG

Thank you, friend. I am glad that you only had a revving for a few days. Mine was so horrific I developed seizures, a psychotic break, migraines, akathisia, a movement disorder like MS and other things I can't even describe. I had to quit my job and it only starting getting somewhat better at 2 years after the AB.

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[Ti...]

I also try to not complain, but I’m right there with you. It’s like if I dare to feel hopeful and start making plans for the future, like working so I don’t end up homeless and living in a tent, a big wave and awful symptoms, plus new ones, yes very scary ones, come out of nowhere. I’ve severed all of my friendships except for one because a different version of me showed up every time we met or talked. Not completely sure, but I may have lost her too and she’s my best buddy from college days. I’ve tried making friends with neighbor acquaintances but gave that up too. And now, as of Tuesday, my oldest daughter is cutting me off again. I honestly don’t know how much more loss I can bear. I’ve lost almost everything that was dear to me. Some I’m perfectly okay with (a season for everything and all that) and some (well, A LOT) is still so hard to grieve. I still can barely even cry. How to grieve without a good cry? 
 

Each day I could qualify for yet another DSM “disorder.” But I try to remind myself I am having a very natural reaction to a very unnatural set of circumstances. We are all experiencing PTSD (although it’s really post traumatic stress minus the disorder part), and ongoing TS (traumatic stress) and certainly grief from losses piling up, plus the otherworldly maddening symptoms. It’s like we have to go through the 5 stages of grief, but over and over again. Like c’mon, Universe, throw me a bone! Enough already! I want out of this Edgar Allen Poe simulation!  

I’m doing all the hard work. The inner child work, the self awareness, seeing my shadow side, trauma recovery, helping others, setting boundaries, etc. etc., meditating, getting in nature, eating well, and yet most days I feel like I’m going mad and the rest of the world is unraveling too, right along with me. 

I wish hope, balance and healing for everyone here. I don’t understand what all of this is preparing us for and that scares the bejeezers out of me. How much worse can it get from here? I just want my energy, my confidence, my independence, and my health back. And a big hug that makes it all ok. 

So, you’re definitely not alone. I’m almost 4.5 years post benzo, and a little over 4 post polydrugging. The only way is through. Peace and love, buddies. Strength to you all. 

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[Wa...]
On 26/05/2024 at 11:29, [[T...] said:

I also try to not complain, but I’m right there with you. It’s like if I dare to feel hopeful and start making plans for the future, like working so I don’t end up homeless and living in a tent, a big wave and awful symptoms, plus new ones, yes very scary ones, come out of nowhere. I’ve severed all of my friendships except for one because a different version of me showed up every time we met or talked. Not completely sure, but I may have lost her too and she’s my best buddy from college days. I’ve tried making friends with neighbor acquaintances but gave that up too. And now, as of Tuesday, my oldest daughter is cutting me off again. I honestly don’t know how much more loss I can bear. I’ve lost almost everything that was dear to me. Some I’m perfectly okay with (a season for everything and all that) and some (well, A LOT) is still so hard to grieve. I still can barely even cry. How to grieve without a good cry? 
 

Each day I could qualify for yet another DSM “disorder.” But I try to remind myself I am having a very natural reaction to a very unnatural set of circumstances. We are all experiencing PTSD (although it’s really post traumatic stress minus the disorder part), and ongoing TS (traumatic stress) and certainly grief from losses piling up, plus the otherworldly maddening symptoms. It’s like we have to go through the 5 stages of grief, but over and over again. Like c’mon, Universe, throw me a bone! Enough already! I want out of this Edgar Allen Poe simulation!  

I’m doing all the hard work. The inner child work, the self awareness, seeing my shadow side, trauma recovery, helping others, setting boundaries, etc. etc., meditating, getting in nature, eating well, and yet most days I feel like I’m going mad and the rest of the world is unraveling too, right along with me. 

I wish hope, balance and healing for everyone here. I don’t understand what all of this is preparing us for and that scares the bejeezers out of me. How much worse can it get from here? I just want my energy, my confidence, my independence, and my health back. And a big hug that makes it all ok. 

So, you’re definitely not alone. I’m almost 4.5 years post benzo, and a little over 4 post polydrugging. The only way is through. Peace and love, buddies. Strength to you all. 

Tink, I can't tell you how much your response resonated with me. I am gut-wrenched that you know how bad I feel this far out and how horrific it has been. I lost my relationships with all four of my daughters who saw me through the acute phase of things but once they moved onto college and away from me and the situation, I think they were so traumatized. These four girls were my life and I raised them as a single mom. It guts me wide open every day.

I don't hear much about people getting new symptoms this far out and feel like I am the only one. Like, I thought I missed the whole vertigo and visual stuff and wham! Showed up for me last year out of nowhere. If you need a buddy, feel free to PM me. And when you said what you did about your friends getting a different version of you each time...that's how I feel. But mine haven't abandoned me, praise God. I am losing my  home right now and the losses just keep coming. You are not alone, my friend.

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[Ti...]

@[Wa...] thank you for that. I’m so sorry about your girls. I was a single mom too, so I feel you. Luckily I’m really close to my youngest and she empathizes with my situation even if she doesn’t fully understand the magnitude of it. She’s mature beyond her years, like an old soul. 

I’m so sorry about your house. I had to sell mine too a few years ago. Too many years of illness finally caught up with me financially. We aren’t the first to have to sell, and won’t be the last unfortunately. Are you still working? All I want is to get back to work so I can support myself once again. 
 

I got the dizziness and vertigo around the 3 year mark. It was short lived and I think brought on by some migraine medication I no longer take. Could be a Covid reaction too, it’s hard to say. I hope you find some relief soon. That is a very concerning symptom to have. Take care. 

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[Wa...]
Posted (edited)
On 01/06/2024 at 10:32, [[T...] said:

@[Wa...] thank you for that. I’m so sorry about your girls. I was a single mom too, so I feel you. Luckily I’m really close to my youngest and she empathizes with my situation even if she doesn’t fully understand the magnitude of it. She’s mature beyond her years, like an old soul. 

I’m so sorry about your house. I had to sell mine too a few years ago. Too many years of illness finally caught up with me financially. We aren’t the first to have to sell, and won’t be the last unfortunately. Are you still working? All I want is to get back to work so I can support myself once again. 
 

I got the dizziness and vertigo around the 3 year mark. It was short lived and I think brought on by some migraine medication I no longer take. Could be a Covid reaction too, it’s hard to say. I hope you find some relief soon. That is a very concerning symptom to have. Take care. 

 

Do you mind me asking where you ended up moving? I am moving into a little casita that my dad is building for me on his property. Without him, I don't know where I would go. I managed to work for the first two years off but the AB setback destroyed that. It's been three years now and savings in dwindling. Like you, all I want is to work and support myself. I have been working since I was 15 years old. When my husband left, I raised my four kids, had a job, went to school in the evenings for my master's degree, and was interning. I had a beautiful life. 

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[ro...]

My symptoms have been cycling like an out-of-control roller coaster for the past year or so since my setback/wave hit me like a freight train. It seems to be working closer and closer to a better baseline, though. I'll probably get slammed real hard by something new just because I said that.

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[Ma...]

Yesterday I was having normal conversations with neighbors at different times walking my dogs.

Today? Survival. Nothing more. Just mere survival. 🥹

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[Wa...]
4 hours ago, [[M...] said:

Yesterday I was having normal conversations with neighbors at different times walking my dogs.

Today? Survival. Nothing more. Just mere survival. 🥹

Yep. Here, too. 

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[Ma...]

Yes, symptoms keeps cycling. It's never ending. I'm 4 year benzo free. Right now it's my gut for almost a year. 😮‍💨

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[Wa...]

I appreciate the responses and glad to know I am not alone. I like to think it's just my brain working to regulate things and the fact that things are cycling means nothing is sticking...

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