The Dizziness Group: For those who are floating, boating, falling or flying

[Guest [...]]

Miss Fortitude

 

I read your update the other day!

You are inspirational!

 

I’m in a tough place, so it was hard for me to respond at the moment.

 

Know that I’m thinking of you and that you will persevere and get better.

 

Take care

Winnie

[[La...]]

Great news, Miss Fortitude! I'm so glad to know that you're doing better and seeing improvements.

 

Sorry for my late reply, but it's been a rough ride for me for awhile now, and sometimes I just can't say much.

 

 

[[He...]]

Winne and Lapis,

 

I'm thinking of you all too. I'm really sorry things are so rough.  This boaty, dizzy stuff is so onerous and frustrating sometimes but I do think we can all feel hopeful with Lady Den's progress. Wow!  I'm not having much problem right now but every now and then I can barely walk alone for a day or two. It usually comes along with a headache. But in general, I can move around pretty easily and driving is no problem.  Miss F, I do find that once the car is stopped if I've been a passenger, I feel kinda gross.  But progress is happening for sure. 

 

Sending hope and hugs to all,

Helen

[[La...]]

Winne and Lapis,

 

I'm thinking of you all too. I'm really sorry things are so rough.  This boaty, dizzy stuff is so onerous and frustrating sometimes but I do think we can all feel hopeful with Lady Den's progress. Wow!  I'm not having much problem right now but every now and then I can barely walk alone for a day or two. It usually comes along with a headache. But in general, I can move around pretty easily and driving is no problem.  Miss F, I do find that once the car is stopped if I've been a passenger, I feel kinda gross.  But progress is happening for sure. 

 

Sending hope and hugs to all,

Helen

 

Thanks, Helen, for your kind words.

[[La...]]

Hi All,

Here's a short video from Dr. Josef Witt-Doerring on the topic of ongoing balance issues with benzodiazepine withdrawal:

 

"Protracted Withdrawal Symptoms (Balance Issues)"

 

 

 

And this one looks at the possible reasons why some people develop protracted withdrawal:

 

"Why do only some develop protracted benzodiazepine withdrawal?"

 

[Guest [...]]

He’s great!

 

I found all his latest YouTube videos!!!

 

 

[[He...]]

Thanks Lapis! I'm listening now. Good stuff.

 

[[La...]]

Yes, agreed. I really appreciate his efforts to educate and share information about a topic that's rarely discussed or understood by most doctors. His willingness to take on these difficult topics is so welcome.

[[He...]]

Lapis,

 

How have you been doing?  Are you getting any improvements lately or still trying to cope pretty much every day?

 

I hope good things happen for you soon.

 

Helen

[[La...]]

Lapis,

 

How have you been doing?  Are you getting any improvements lately or still trying to cope pretty much every day?

 

I hope good things happen for you soon.

 

Helen

 

Hi Helen,

Thanks for asking about me and for your kind words. I've been struggling quite a bit over the last year and have deteriorated quite a bit. I don't feel comfortable saying too much, though, since I find it upsetting to explain it all. Suffice it to say that the disequilibrium and dizziness have exacerbated another medical issue I'm dealing with and made my life quite miserable. I'm crying all the time these days, including this morning.

 

I can't really bring a lot of light here, but I do appreciate that you care, Helen. Thank you.

 

I wish nothing but the best to everyone here.

[[di...]]

Hi... Can people please tell me how you cope during your taper with this rocking bobbing swaying sensation??  I basically cannot walk around my home because of it and for the past 2 weeks I've only been able to take a few steps as my legs feel so wobbly. I basically cold turkey  4.75mg of diazepam over a 7 day period 2 weeks ago then ended up reinstating on just 2mg a day later as I couldn't even lay down to sleep.  Pamster is now helping me with a taper.  How do you manage to lay down and sleep with this horrid feeling???

 

Thank you so much.

Diana.

[[La...]]

Hi Diana I’m sorry to hear your on the Captain Jack Sparrow boat! I’m telling you, he’s a chithead! You’ll have this for however long it takes to correct itself. It’s normal to have it. Very annoying! It’s very common so don’t freak out too much. Yes it is hard to drift to sleep when it’s at its worst. What I used to do is join it! What do I mean?.?

I’d pretend I’m being rocked by my mother. Or that I’m on a boat enjoying the breeze as I sail. You know the saying….if you can’t beat it, join it? That worked for me. I also meditated with spa music and pretend I’m at a luxury spa on vacation. My rule was keep my eyes closed and focus on the music ( the wave sounds, nature sounds, etc) Next thing I know I was asleep. 

 

[[di...]]

Thank you Lady Den    I actually developed this rocking bobbing swaying sensation when I came off benzos back in 2004 but it was never as bad as this, but it would, get a little worse under stress.  It's a horrible feeling and especially since its keeping me chair bound! My legs are getting wobbler and weaker by the day 😢😕 does anyone find this rocking bobbing swaying is worse upon waking???

[[La...]]

Yes when I wake it’s a little worse for an hour or so. And at bedtime. Totally normal under the circumstances

[[di...]]

Thanks LadyDen.

 

Is it a feeling of being drunk upon waking would you say?

[[La...]]

Hi Dido,

On the first page of this whole thread, you will find a list of descriptive terms that other BBs have used when try to explain the sensations that they feel. I've never been drunk in my life, so I never use that term myself. But because alcohol and benzodiazepines/Z-drugs all act on the same neurotransmitter in the brain (GABA, or gamma aminobutryic acid), they can have similar, negative effects on the vestibular system (system of balance).

 

Many medications can cause dizziness, so it's not just benzos and Z-drugs. The list is extremely long.

[[di...]]

Hi Lapis, when I say drunk, I mean as in a rocking swaying sensation within the head.

 

Thank you for your reply.

 

Diana

[[La...]]

Yes, for sure, Diana, those are really common sensations -- rocking, bobbing, swaying, wave-like, trapped in a current or in a wavy ocean, etc. A lot of people feel as if they're being pushed or pulled in a certain direction, as well.

[[di...]]

Hi Lapis and thank you

 

It's causing me a lot of distress as it's keeping me bound to the chair, and because I'm not mobile due to it, my legs feel like rubber. Jelly. I can't even take a few steps across the room and I'm at a loss as to how to overcome this. Obviously if I can't move around my legs and balance will only get worse and it scares me to death that I might not walk again 😕

[[La...]]

Hi Lapis and thank you

 

It's causing me a lot of distress as it's keeping me bound to the chair, and because I'm not mobile due to it, my legs feel like rubber. Jelly. I can't even take a few steps across the room and I'm at a loss as to how to overcome this. Obviously if I can't move around my legs and balance will only get worse and it scares me to death that I might not walk again 😕

 

Hi Dido,

Yes, I think most of us can relate to that. Have you considered a cane or a walker? They can help you stay mobile and safe while you move around. You can try chair and bed exercises as well in order to maintain your strength and flexibility. If you can see a physiotherapist for help and advice on these things, then s/he can hopefully provide an exercise plan and suggest what would be best in your situation.

[[La...]]

Hi Dizzy BBs,

I've just posted a medical journal review article about the use of benzodiazepines, which are known as "vestibular suppressants", for the treatment of benign paroxysmal positional dizziness (the spinning kind of dizziness) in the Benzos In The News section here:

 

http://www.benzobuddies.org/forum/index.php?topic=276906.0

 

Not surprisingly, the review shows that the use of these types of medications can be problematic, in that they don't necessarily work. And, as we all know, they can actually CAUSE dizziness in many people. So, using them to treat dizziness might not be such a great idea after all.

[[di...]]

Hi Lapis, I can't see a physiotherapist as I'm completely homebound 😕 I'm doing chair exercises yes to try and strengthen my legs. I notice that when my anxiety gets really bad my legs feel even weaker and rubbery. What a horrible situation to be in 😢

[[Mi...]]

Hi everybody,

 

It's been a month since I've posted here. I wish everyone well.

 

😊I've made some recent strides from the "plateau" I was on for about 7 or 8 months. I had acquired some motion sickness riding in cars (as a passenger, & whenever I attempt to drive) all of last fall & winter. It was something that I had not struggled with to this degree, previously on my journey. Not this consistent & not this quality. I mean I had the dizziness/boatiness/equilibrium issues on & off on my journey (mostly on) , just not this badly in the car.

 

For whatever reason car rides had become a total ass last fall. I would still go for rides, but it felt like crap a lot. Boatiness in the car, especially at stop lights. I limited leaving my neighborhood a lot. I'd walk the dog, & then we'd "test the waters" & go for a drive in town & sometimes I could tolerate it, & many times we'd head home. I guess my brain needed to work on that part of healing.

 

This was accompanied by some occasional days with the mental symptom of "hopelessness". Something I had not had in MONTHS that came back to make some short visits too in Jan & Feb. The combination of the car issue & hopelessness was making me depressed. I had to dig deep and really trust the process of healing and trust my body is doing what it needs to do to heal.

 

There's always a bit of hesitancy with me to share good news because I'm always a bit afraid that once I post something here, that it will rear it's ugly head, & issues will return... jinx, Murphys law, or whatever, but I want to share. It feels good to do so & gives others hope.

 

Anyway, as of the last month I have made big improvements in the area of motion sickness in the car. And the mental "hopelessness" has left as well.  😊

 

Since the end of February I have been riding (as a passenger) around daily & getting out to visit a park in town with my dog. I figured a short distance from point A to point B in the car, while feeling great at the park would boost my confidence & my spirit, & it did. Then we started to do the same going to stores again. I really had not been doing that much in the last several months. Now we go to the store at least weekly or more. Sometimes the lights are a bit bright or weird, but most of the time it's fine. I am trying to learn to live with this "back & forth" until it's well...no longer back & forth & I'm healed.

 

We are on rides now anywhere from 20 min to sometimes 3 hours 😊. I know I was doing this without a lot of issues earlier in my healing in year 1, 2, 3 ... I can't explain why the later part of 2022 & early 2023 was such a challenge with this, but I'm so relieved that I'm back on pace with working on the ebbs & flows of this. For the most part I do just fine & enjoy it, but I can still, on occasion, get a little idk... my brain feels mildly challenged?? But I can work through it while we're out & about, & it's brief, & it passes.

 

I've had a lot of other improvements too. I lost the benzo bloat. It just happened back in November. Over the period of like a month. I did nothing different & lost 10 lbs. Mostly to my waistline and most noticeable, the bloat on my face is gone. Imagine that. It took 3 1/2 years of being med free for that bloat to go away. It's most obvious in photos. I also don't spend much time in bed anymore. That's been an improvement since last August. I used to HAVE to be in bed due to fatigue & malaise a few hours during the day. Now if I get tired I rest in the recliner. I have not had benzo flu for almost 3 months. This is the longest stretch that I've been free of that symptom.

 

My last lingering symptoms are: boatiness that's mild after activity. It's most noticeable when I first sit down, & when I first get into bed, & it goes away in about 20 min. Also sometimes, not always, mild brief boatiness at traffic lights. Zoom meetings can make me boaty too, after about a half hour, but I get used to it. I can still get a little doomy feeling around my period. I tend to over worry about things... like symptoms returning, but I think that's normal at this point in the game.

 

I am hoping and praying everyday that I continue on this path of improvement  😊. It is so nice to have the ability to feel some more freedom & normalcy. Monday i was able to shop for Easter decorations and enjoy it. I'm trying to build my confidence up, yet again, & keep going.

 

Hugs to everyone 

[[La...]]

Hi Lapis, I can't see a physiotherapist as I'm completely homebound 😕 I'm doing chair exercises yes to try and strengthen my legs. I notice that when my anxiety gets really bad my legs feel even weaker and rubbery. What a horrible situation to be in 😢

 

Hi Dido,

Have you looked into finding a physiotherapist who makes home visits in your area? I'm not sure where you live, but it may be an option. Check it out!

[[Th...]]

Hey everybody. My wife’s worst symptoms at the moment are dizziness (new since she dropped below 0.2mg of klonopin) and nausea (always her worst symptom). It now happens when she lies down for bed and is affecting her sleep.

 

We haven’t yet tried Dramamine because I know it has a moderate interaction with benzos, so far we’ve used emetrol and ginger to treat her nausea. Now with her dizziness I’m wondering if Dramamine would help.

 

Anyone here ever try Dramamine? Did it help? What helped you with your nausea and dizziness?