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

[[Be...]]

Trying to calm myself always helped my dizziness and nausea, etc.  Self-soothing talk helps me.  I need to keep telling myself that everything will be alright.

[[Ga...]]

I found out in Dec I have Arnold-chiari malformation

Alot of sx mimic benzo w/d. Off balance, dizziness, tinnitis, etc.

 

They found out after I had CT and MRI done

The sx are awful but only relief seems to be an op.

 

Just wanted to pass this on.....

[[La...]]

I found out in Dec I have Arnold-chiari malformation

Alot of sx mimic benzo w/d. Off balance, dizziness, tinnitis, etc.

 

They found out after I had CT and MRI done

The sx are awful but only relief seems to be an op.

 

Just wanted to pass this on.....

 

Oh my goodness, Gardenia! I want to wish you all the best with that. And I appreciate that you shared that information with us. It once again shows how important it is to seek out appropriate testing and treatment (if required), since dizziness can be a symptom of many different kinds of illnesses.

 

I had to look up this condition, and here's what I found on the NHS website, for those who want a bit of information:

 

https://www.nhs.uk/conditions/chiari-malformation/

[[Be...]]

Gardenia, what did they say caused that malformation?

[[Ga...]]

Thank you lapis.

They found this when I broke my leg in Dec. They did MRI and CT scan to rule out a stroke...

They tried to find out why I fell. I don't have diabetes, I didn't trip etc

I guess I just lost my balance

Anyways, I'm just glad I don't have the bad headaches. The dizziness, boaty feeling, tinnitis I have

 

[[La...]]

Do you have a date booked for that surgery, Gardenia?

[[Ga...]]

Do you have a date booked for that surgery, Gardenia?

 

Oh no, they said it was kind of risky. I'm too afraid.

[[Re...]]

Does anyone get dizziness when their eyes are closed only? Feels like the room is spinning.

[[Be...]]

I jumped a little over two weeks ago with NAD+. In acute hell now, turned a tiny corner today. I had some of these dizzy spell symptoms during taper. Now they happen much more. Really bad the past week. I felt like my feet were going to slide out under me. The room was spinning around in circles, I'm hanging on to my walker, walls, chairs, etc. Fun times!  Everything gets worse in the evening. I tell myself that I am a survivor, I will survive. This too, shall pass, in due time. The past two weeks have been a rollercoaster ride. I get off the rollercoaster, but everything around me moves.

 

You know, I never liked bobbing up and down in water. I feel like I'm bobbing up and down in a raft, don't know how long this will last, I'm in uncharted waters as it is doing NAD+. 

 

Lapis, that article. Of course, it's the benzos. Not surprised about that.    Everything benzos 'fix' they eventually make worse, times two. But doctors are programmed to reach for what they believe works.   Well, it works, until it doesn't. Look at all the people on BB who were prescribed benzos for something other than anxiety and/or panic attacks. Getting off my soapbox now...

[[La...]]

Hi BenzoLottie,

Everything you're describing sounds so familiar, and I can only wish you well as you navigate these rough waters. I hope these difficult times are short-lived for you.

 

Which article were you referring to in your post? I've shared quite a few over the years. Was there one in particular that spoke to you?

[[Be...]]

Hi BenzoLottie,

Everything you're describing sounds so familiar, and I can only wish you well as you navigate these rough waters. I hope these difficult times are short-lived for you.

 

Which article were you referring to in your post? I've shared quite a few over the years. Was there one in particular that spoke to you?

 

 

The one you linked to on March 23, "Vestibular suppressants." My sister had tests for a possible Vestibular disorder (they eventually ruled it out). I told her to not let anyone prescribe her any benzo for it. As I found out that benzos are commonly given for that. Didn't want her ending up in the situation I'm in.

 

I'm doing another round of NAD+, to knock down some of the glutamate excitotoxicity from diazepam still leaving my system. I'm hoping to have the same response that others who did this had, so a lot of the worse stuff should start settling down over the next few weeks. I'll still have waves where things will return, over the next 4 to 6 months. I guess I will be rocking my boat, and bobbing along with the waves.  I just wish the waters weren't so darn choppy.   Looking forward to docking this boat, and stepping off for good.   

[[La...]]

Ah, yes, good advice for your sister! When I first read the phrase "vestibular suppressants", I was quite upset to find out that the medication I was taking was on that list. I'd been dizzy for so long and no one had mentioned this term before.

 

Yeah, it's not good to suppress the vestibular system when you want it to learn how to function normally. It is certainly given for Benign Paroxysmal Positional Vertigo, but it's only supposed to be given for a few days -- at least, that's what I've read. But, of course, if it's about the crystals in the inner ear and there's a treatment for it, then it makes sense to just do the treatment and solve the cause of the problem. We all know the risks of benzos, and we all know how quickly they can become problematic. According to that study, the benzos don't even appear to be helpful for BPPV.

 

I really do hope that your dizziness settles down quickly, BenzoLottie. Take care. 

[[La...]]

Lapis I wanted to pop in and say I’m sending you love and big hug! 

 

I’m doing much better. I’ll be 3 years tomorrow June 20 th. I’m so excited for my new healed life. I’m about 85-90% if I had to estimate. I’m living a nearly normal life each day centered around my boatiness. But it is much more mild and is not a debilitating problem anymore. I’ve started driving a bit as well as now walking outside nearly everyday for 30 minutes atleast. It’s so wonderful to do that again.

I just wanted to post here to let you know how much I appreciated all your loving support and help during my most boaty long years. I pray you are well and happy and finally better.

 

To anyone rocking on a boat, pushing and pulling, spinning, ataxia episodes ( sudden muscle weakness), elevator dropping, etc….hang in there! It gets better with time. I’m a witness.

 

[[Ho...]]

Yes! And I have tried everything to try and figure out why. Diet, hydration, exercise, sleep. What I have determined is that in my experience, there is no rhyme or reason to any of it. It’s going to do what it wants to do, when it want to do it. This goes for all my sxs.  My life has become a hellish nightmare that I can’t wake up from!

 

Hope you and everybody gets some relief soon!

[[La...]]

Lapis I wanted to pop in and say I’m sending you love and big hug! 

 

I’m doing much better. I’ll be 3 years tomorrow June 20 th. I’m so excited for my new healed life. I’m about 85-90% if I had to estimate. I’m living a nearly normal life each day centered around my boatiness. But it is much more mild and is not a debilitating problem anymore. I’ve started driving a bit as well as now walking outside nearly everyday for 30 minutes atleast. It’s so wonderful to do that again.

I just wanted to post here to let you know how much I appreciated all your loving support and help during my most boaty long years. I pray you are well and happy and finally better.

 

To anyone rocking on a boat, pushing and pulling, spinning, ataxia episodes ( sudden muscle weakness), elevator dropping, etc….hang in there! It gets better with time. I’m a witness.

 

Hi LadyDen,

Congratulations on all of your amazing news! It's great to know that you're doing so well and getting back to doing things that you love. If I did anything at all to help in that process, then I can say "You're welcome," but I really think you did so much work on your own in terms of figuring out how to get yourself through the difficult times and pushing yourself when you felt you could take the next steps along your healing path. It's really an individual thing for all of us, so even as we're trying to help each other out, we all know that we have different stories and experiences.

 

Thanks for your well wishes too. I'm not in a great place right now, and I don't post about my own story these days. But I do appreciate the kind words and support.

 

I wish you continued healing and success, LadyDen. Thank you for sharing your good news here. Many (most) people just leave when they're doing better, and in so doing, we don't get to hear about positive outcomes and symptoms fading away. Now that you've posted, people can share in your good news and take away some hope from your story.

 

I also hope you'll post something in the Success Stories section when you feel ready. Those stories greatly help others as they navigate their own pathways along this rather bumpy road -- or, through these boaty waters, as the case may be. 

[[Ho...]]

Yes! And I have tried everything to try and figure out why. Diet, hydration, exercise, sleep. What I have determined is that in my experience, there is no rhyme or reason to any of it. It’s going to do what it wants to do, when it want to do it. This goes for all my sxs.  My life has become a hellish nightmare that I can’t wake up from!

 

Hope you and everybody gets some relief soon!

 

I’m not sure why this ended up here in the thread. I’m not even sure what I was replying to (Benzo Brain).

[[Ho...]]

Lapis I wanted to pop in and say I’m sending you love and big hug! 

 

I’m doing much better. I’ll be 3 years tomorrow June 20 th. I’m so excited for my new healed life. I’m about 85-90% if I had to estimate. I’m living a nearly normal life each day centered around my boatiness. But it is much more mild and is not a debilitating problem anymore. I’ve started driving a bit as well as now walking outside nearly everyday for 30 minutes atleast. It’s so wonderful to do that again.

I just wanted to post here to let you know how much I appreciated all your loving support and help during my most boaty long years. I pray you are well and happy and finally better.

 

To anyone rocking on a boat, pushing and pulling, spinning, ataxia episodes ( sudden muscle weakness), elevator dropping, etc….hang in there! It gets better with time. I’m a witness.

 

So glad to hear this LadyDen!  Congratulations and best of luck with your new found healing progress!

[[La...]]

Thank you Lapis and Hopper. 

 

I just wrote Lady Den’s 3 year milestone post if you want to read it. Lapis you are right that others need to read the progress of healing from those of us who are better. In my worst days they were the main things I read over and over to give me directional focus. I’m so sorry to hear that you’re not in a good place still. I often think of you.

Positivity. Faith. Hope. All goes along ways. Hopper don’t you dare give up!!!

And yes friends like you both DID play a big role in my recovery. I don’t have the words to thank you all.