Is this possible?

[[de...]]

Hello everyone,

 

Is it still possible to experience (after many months) vestibular symptoms 3.5 years out Valium?  Vertigo, nausea, headache, tinnitus, eyes not focussing properly?

 

I've still got DP/DR, but it's heaps better than it was in the early days. 

 

I'm still sneezing, sometimes an itch with minimal rash.  Still fatigued, and exercise intolerant.  Anxiety, still. 

 

It seems a very long time to still be feeling this way, and wondered if others, anyone, have experienced same?  I'm becoming very depressed. 

 

I hate whinging and complaining, but this is wearing me down big time. 

 

My best to all.

 

 

 

 

[[Hi...]]

Hello

 

Read your post and wanted to follow up.

 

I am 32 months and three days out.  Yes, I still have symptoms but at a less frequent degree.  Mostly high levels of anxiety on occasion with air hunger and fear but I manage.  It dissipates after a few days but it is what it is.

 

I can say though, that I am not 100 percent.  Seems a healthier diet helps.

 

Most on here are short timers so you will likely not get many responses which is why i dont post much anymore.  But keep the faith.  You will recover.

 

Take care,

 

Hingie

[[de...]]

Thanks Hingie, 

 

I'm so over it, and your reply helped. 

 

I think you're right about diet.

 

[[al...]]

Hey deadwood, so sorry you are still suffering--we are on the same timeline and I still have all of the symptoms you mentioned. I also still have tinnitus, GI stuff, and crappy mornings. it's truly just unreal that this keeps going on and on without an end in sight. I had a huge wave of anxiety come back lately that was brutal. It's so hard to stay positive this far out, but I hope we both make it to the finish line soon.

[[de...]]

Thank you alichino. 

 

Very difficult to accept this far out, that's for sure.

 

I usually try to stay positive and not groan on, underplay my symptoms, but it has worn me down. 

 

Bring on the finish line I say. 

 

Thanks again alichino it really helps to know I'm not alone. 

 

Dee 

[[Hi...]]

Hi alichino

 

What is your anxiety like?  How intense and what do you feel like when you go through  it.  I ask because over the past week, I have had one heck of a bout with this.  I feel like constant air hunger or short on air plus my head races and the fear makes my stomach upset.

 

Hope you both get well soon.

 

Hingie

[[al...]]

Hi alichino

 

What is your anxiety like?  How intense and what do you feel like when you go through  it.  I ask because over the past week, I have had one heck of a bout with this.  I feel like constant air hunger or short on air plus my head races and the fear makes my stomach upset.

 

Hope you both get well soon.

 

Hingie

 

Hey Hingie,

 

The anxiety is like a combination of anticipation anxiety, some general fear like you mentioned, and maybe a bit of agoraphobia too. It's like my brain is in this subtle panic mode constantly when it doesn't need to be. So sorry to hear you're dealing with it too! I never thought it would be a problem this far out. I even stopped drinking coffee thinking that might be causing it, but nothing seems to be helping.

[[Hi...]]

Funny about the coffee.  I love my french press and grinding my own beans but lately I have not had any.

 

We will recover....

 

Hingie

[[le...]]

Only just seen this deadwood, just wanted to add sadly I’m still part of this club. My symptom mainly anxiety hasn’t shifted, I’m not awful, but not really progressing. Feel as if my brain is a rainwater gutter, the water runs so far, but the gutter is blocked with debris, so then comes to halt, not matter how hard it pushes can’t proceed any further, if that makes sense. Does seem quite few people take 4 years or so to improve. Maybe we can all support each other keep posting when you need support.

 

 

 

[[Ju...]]

Yes, I'm 36 months out and I just started doing regular things in society again. But my symptoms are still hanging around, mostly air hunger and nerve pain and muscle pain, and the whole eyesight thing as well. Sometimes my vision is extremely blurry, and sometimes it's a little clearer.

 

But if you look at right now compared to the first few months, it's a huge difference. I was Homebound and bed bound, I couldn't even leave my bedroom for a few months. I was scared to even walk around in my home, because I was afraid my neighbors would hear me walking. Luckily that's all in the past now.

[[Mi...]]

It's true, as said above, those who frequent the forum are around the 0 (just starting) to almost 3 year time line.

 

There are those who are less & leave.

 

But, many take like 3-4 years.

 

•Michael Priebe of The Lovely Grind took 3 years

•Baylissa Frederick took 3 + years

•Jason Anthony on YouTube took 3-4 years

•David Powers - Coach Powers on YouTube (and a website)was 3 years

•MeganZ on the forum took 4 years

•Boomboxboy21 on the forum took 3-4 years

•Brokenpetals posted on the forum that they are finally doing really well at 40 months

 

I also write to someone outside of this forum who was last on the forum Sept last year saying at 2 years they were much better with manageable symptoms... and they were moving along and back into life, taking short trips etc still dealing with symptoms, but living....That was the last we see of them on this forum, last year. Well, I talk to this person outside of the forum, around 3.5 years they had a wave for about 5 weeks. A rough, but manageable wave. Now they feeling even better than ever. None of this is on the forum because they choose not to come here because it is so triggering to them.

 

This happens a lot! People get better, but they still have ups & downs, but it gets to a point where they are healed enough now to handle some of the "ups & downs" on their own. You will know when you need the support here and when you don't. I still  need support from time to time.

 

I think we need a 3-4 year group on this forum. Going to the protracted group just is different than 3,4 maybe 5 years.

 

& it's true people just get better & leave. They leave because it's way too triggering. It's a balance of moving on with life and forgetting about withdrawal versus still needing support. Eventually the scale tips and folks no longer need the support. They are back into life and they leave benzobuddies, many never coming back to write success stories. Most just don't. I am learning this myself more and more. When I have good stretches of weeks I do not want to be on the forum. I've thought about withdrawal everyday, most all day long for 3 years, therefore when I feel good I want absolutely nothing to do with it. The better I get, the more true this is.

 

.....Or people who have healed are waiting to be sure they don't have a med sensitivity to write a success story -- and it can take literally YEARS to ever need an antibiotic/surgery/procedure for them to know if they are going to have issues with it.

 

Baylissa Frederick took 8 years, after being healed, before she needed a surgery and antibiotics to know if she was going to have any med issues. She did not have any issues, but it took EIGHT YEARS!

 

Dr Jennifer Leigh just needed an antibiotic & dental work just this year - 11 years after she was done with benzos for her to know if she was going to have a med issue or not. She had no issues.

 

8 years! 11 years! People have done moved on majorly by then.

 

Deadwood,

I'm at 38 months.

I still get wobbly/ balance issues/dizzy/boaty feeling from time to time. That symptom was horrific back during tolerance withdrawl for me. It lessened and lessened and lessened... it's left for months at a time. That vestibular stuff can come back for me sometimes if I get a symptom flare that can last over a week because I get stressed from the symptom flare (which is almost always benzo flu), and my vestibular crap can return when I over do it and with stress.

 

Dr Jennifer Leigh had that damn dizziness... In the beginning when she was in Drug detox she was in the hospital bed and it felt like a bucking bronco. She spent YEARS feeling like she was on a boat, dizzy, needing a walker at times, bedridden at times. She no longer has those issues. They all went away in time. This is all free to everyone in her blog.  "Benzowithdrawal Help"

 

We will get there. We will.

[[le...]]

I totally agree should be a 3-4 year forum. Think probably lot people like me, don’t really fit on protracted board as lot people been suffering lot longer than I have on it. But ones on this forum generally seem been off lot  less time than I have. Probably quite few people 3 years plus , that just don’t post anymore, because they think people will get fed up with them, but still need some support. Maybe even 3-5 year, something between this forum and the protracted group.

[[al...]]

Love all the posts here, and I'm totally down with the idea of a 3-4 (or 5) year support group! I took my last rescue dose 3.5 years ago, but I'm very close to 4 years since acute WD started for me. I hate to see that so many of you are still suffering this far out like I am, but it's nice to know I'm not alone.

[[de...]]

Thanks to everyone for following through on my thread. 

 

It helps to know that it's not 'all in my head', and that this stuff really can go on for years, even if improving. 

 

I've been too scared to go to Protracted, but would really like a Forum for 3,4,5 years.  How do we do that? 

 

Keep getting well my friends. 

 

Dee 

 

 

[[le...]]

I don’t know maybe use the contact the team box or feedback . Otherwise just keep posting on here periodically and we can all update each other. Think I did try starting one under Support groups while ago but got little response think because lot people don’t look under there. Think there are lot of us probably like this. It definitely needs something to be listed amongst the main boards between this and protracted. I’ve got feet in both camps as only off AD’s 25 months, but had symptoms for 40 months that didn’t change all time was on other meds. You certainly aren’t alone.

[[Mi...]]

Deadwood,

 

Bananaman had the dizziness issue too and it slowly went away. I pasted his post about it here:

 

Re: The dizziness is gone

« Reply #1 on: February 07, 2022, 10:09:35 pm »

Quote

Hi gtheo…

 

This is so good to hear and I can totally relate to your recovery of waves and windows. I too suffered the dizziness for years and it very slowly disappeared, i no longer have it at all!

Hold on tight in their my friend, complete healing will come to you, one day everything will be in the past, it has for me as I’m just about healed now.

 

Good luck buddy…

 

Banana Man.

[[le...]]

Just put in a request under feedback fir 3-5 year group. Probably won’t get anywhere , expect get told to go on protracted board, but maybe you guys could chip in as well ?

[[ja...]]

Hey guys... I love the idea of this group.  I see towards the bottom of the website there is a spot where you can title and start your own version of support... it's under Support Groups.... 

[[Ju...]]

Leanne, that's a good idea. I'm going to contact the help desk and see if they will start a 3 to 5-year group.

[[le...]]

Just heard back from the administrators they won’t set up a group for 3-5 years, as we are protracted have to go on the protracted board. Or set up group under support groups, already tried that and got hardly any response, so sorry guys I tried. We will just have keep posting on here and support each other, I struggled find people in same position as me on protracted board.

[[Ju...]]

I feel the same, it's like everybody on the protracted section have Doom and Gloom stories and only talk about how they're never going to heal. It almost sounds like the acute stage crowd, only way further into it. I need to find people around my time frame and see what kind of symptoms people are having, and what they have tried.

[[le...]]

I feel exactly the same, I’m not recovered , but nowhere near as bad as most them on there.  But they won’t start up another group, and no one seems to look under support groups, so we’ll have keep trying posting here🙂

[[de...]]

Thanks for trying leann. 

 

I don't want to go to Protracted board I feel gloomy enough already. Lol

 

I'll just continue to post here where we can still share our experience, support, validate. 

 

Thanks again leann.  You gave it a good bat. 

 

Dee x

[[le...]]

You can see the reply I got under feedback. I’m not criticising the administrators, we are very grateful for the work they do.

Just think there definitely is a need for another group, especially as we seem agree protracted board bit gloom and doom, and majority of people seem at least 5 years off.

Anyway keep posting on here we can support each other 😃

[[Ju...]]

Well I'm glad we all agree. I feel kind of bad being on this website in the first place, because all I did was argue with people for the first couple years. I was feeling so bad that I guess I felt like taking it out on other people, I had a lot of trauma that needed to be dealt with aside from the benzo withdrawal.

 

Now whenever I look at these acute stage people, I see myself a year or two ago. All the questions, all the unknown uncertainties, questioning whether or not you will ever heal Etc. There's simply no answer, it's a matter of willpower and staying off of Medicine until you heal, some are capable and some are not.

 

I just got back from a walk at 1:00 a.m. on the waterfront in seattle, it's really busy this time of year. It's like a ghost town during the winter, and then as soon as the weather dries up and it gets warm, it's like a big party. There were big groups of people sitting in the grass and I was walking by and starting to get some waves, even though I haven't had them in a long time.

 

Sometimes when I get nervous I start getting this pressure in my ears, it makes me question whether or not I should keep going, or if I should turn around and go back home. I've already been to the islands all alone on the water ferry system and I've been about 30 miles out with nothing other than my wallet and cell phone and house key. But even sometimes just going down the street when there's big groups of people, it can still be intimidating.

 

For some reason I don't worry about logical things such as getting robbed or shot or stabbed or anything like that, my fears are more irrational stuff like being judged just for the way I'm walking. Or what if they are thinking I'm wearing something stupid, or what if I look like I don't fit in this part of the country. You know what I mean? Basically social anxiety type stuff.

 

Sometimes I still get really hot for no reason as well, and sometimes I'm freezing cold. My sleep is completely off still, and my body temperatures are still not regulated. I think I was doing the best around a year and a half off, and right now I'm 36 months and a couple weeks.