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

[[dr...]]

woohoo Lapsis!!!!

[[La...]]

Omigosh! Thank you! I've been bawling here most of the day, so when I read these great notes just now, I actually cracked a smile for the first time today. That's SO sweet of you abcd! And Drew, thank you too! I don't feel much like a "trooper" of any sort right now, but it feels really nice to hear it from someone else. abcd, it's very thoughtful of you to avoid too many of the jumping jack emoticons on the Dizziness Group thread. Those little buggers drive me nuts! But I appreciate the sentiment, of course.

 

Twenty-two months...uh-huh. It's an unbelievably long time, especially since I was dizzy for so long before coming off the benzo beasties. And yes, riding my bike again will be one of the most joyful experiences of my life, I'm sure, and it can't happen a minute too soon. Freedom! The Dizzy Dame will be replaced by the Daring Dame, as I'll be whizzing around as fast as I can. 

 

 

 

 

[[La...]]

Lapis2-I can always count on you for making me laugh thank you!! I'm thinking of starting a wig business called Benzo Buddie Wigs:)...even offer a 2 for one special.

 

On a lighter note my nails are holding up and growing again so that's a good sign...LOL

 

This is going to sound crazy but you are smart and you will know the info. About two years ago I had my first ear infection in my right ear. I had vertigo and then pain in my ear so I went to the doctor and she confirmed I had an ear infection. After my infection healed I always had a little lymph node under the right ear. I went to my doctor and an ENT they said it's nothing. If you touch it, it will get bigger so leave it alone. They said it was related to my ear infection. I just touched it and it seems smaller. Do you think it could be draining now since I went off a benzo? Anything is possible in the wild wacky world of benzo's...hahaha

Fran

 

Fran, that's a great benzo-biz idea! Wigs! Well, my hair loss wasn't that bad, but who knows? I'm sure there are others out there who'd like to have some cool options.

 

I'm certainly not in a position to understand what's happening with your lymph node there. What I try to keep in mind is that the body tends toward healing, and it seems like that might be happening in your case. Having said that, some other bumpy things can hang around and it can be absolutely fine. We've all got our little bumps here and there, and if they've been checked out and found to be okay, then I guess we just have to make friends with them.

 

Anyway, I'm glad you got a few laughs in there! We should all be doing a lot more of that. For awhile, I was checking out comedians on Youtube and silly things (yes, I admit, I've watched cat and dog videos, plus a sneezing panda, and the BBC Talking Animals series). Whatever works, I say!

[[Al...]]

Lapis2-Laughing is so good for you. You should watch the comedy station!!! I just made an appt with an acupuncture what do I have to lose except my time:)

Fran

[[La...]]

If your acupuncturist finds the Anti-Benzo-Withdrawal-Dizziness-Point, please tell us all where it is! We can stick our own pins in our own heads and finally get off the boat!

[Guest [...]]

Lapis,I agree,you are smart!Im so sorry you are struggling today,I so get it.I think Ive cried more since being on the benzo journey than I ever have.I watched Leave it to Beaver today where Wally sells igloo icecream and some of his neighbors and friends stiff him on the money for the icecream.Made me smile and helped with the blues today.Its so nice you watch animal videos to cheer up!You are right,what ever floats our floaty boats when we are down and dizzy!Do you have a pet?

[[La...]]

Hey 2200, just thinking of "Leave It To Beaver" brings a smile to my face! "Beaver Cleaver!" (yelled June and Ward Cleaver). Omigosh! We must all be from the same "era".

 

No, I don't have any pets, but I if I ever see a creepy crawly thing, I have a little chat with it. It's good to make friends here and there! 

 

I know what you mean about crying. I wish I'd taken out shares in Kleenex or something. Some people say crying can relieve the stress, so perhaps it's fine. I think it's just making me look older. Anyway, do hang in and hang on and don't let the ship go down!

[[Al...]]

Lapis2-IT'S A DEAL!! Let's see what she can do for me? haha

 

Can she make my hair stop shedding...I'm laughing so loud but it's not funny:)

 

I notice my rockiness gets worse right before my period. Flo is coming to town this Monday.

Fran/Flo

[[Co...]]

AF...I got those body jerks in early acute and now they have returned but less frequently. I could be wrong but I think they are called myoclonic jerks. I remember having my arm literally fly away from my body ....or my entire body jerk. ..with some force. Now it just mostly my head at the back of my neck. For me, these always occured right before I fell asleep. In the beginning I was sure that they were seizures or precursor to seizures.. .but they are not. Just another w/d sx.

. ......I also had patches of my hair fall out..right down to visible bald spaces. I cried. It took about 9-12 months for it to completely back. But it is all back now...better than before because I have improved my nutrition by about 1000x since acute. .....So sorry these things are happening to you...both are harmless but cause us one more anxiety. ....coop

[[Al...]]

Cooperten-I'm so sorry that you had to go through that but I'm happy that your hair stopped shedding and it grew back. Has anyone read The Benzo Book? It's free on line and it's a very good book. I'm posting a quote from the author. I'm sending good vibes to everyone on this group. Stay positive and we will all heal!!

Fran

Given time (and minimizing other stressors wherever possible) I

knew I would heal. Why? Because, simply, the body is a self-healing

mechanism. Encoded throughout all of its components are the

instructions for repairing itself. As an example, if we cut ourselves,

blood will automatically clot, the cut will close itself up, new tissue

will form, and the problem will be repaired—all without our conscious

control. What causes a cut not to heal is interference with the

healing process: not keeping it clean, picking at it, irritating it,

stressing it out by expecting (or demanding) that the damaged area

perform while it’s still recuperating.

 

[[La...]]

Thanks, Fran! Excellent! I wish I knew if there were an equivalent to irritating or "picking at" our vestibular systems. It's not as clear-cut as a cut! I"m sure that restricting head movements is a bad idea, but the list of what helps/what hurts isn't well known.

 

Suffice to say, I'm always reading and looking for good information to share here. I read a medical journal article about the role of GABA in the vestibular system, and it's very complicated. There are differences between one species and another, and as always, "more study is needed". Still, though, it does seem that it tends toward healing. Most of the articles focus on "lesions", which is not what we're dealing with. We've got neurotransmitter changes, and it's not just GABA that's involved in the vestibular system.

 

I think we have to rely a lot on those who have gone before us, e.g. those who have had this symptom, who doubted it would go away and who then got better. Those people are likely NOT hanging around BB! They're off enjoying life! Keep reading the Success Stories. Those are real people with real stories of healing.

[[Al...]]

Lapis2-You are going to heal 100% I promise you.....time heals all wounds and you have a great attitude!! I stopped reading all of the new posts on BB. I only read the success stories and I am in three BB groups with some very positive people. I did hire a Benzo coach and she has helped me so much. She too has been through this benzo journey and she knows more than my Pdoc.

 

You know what is so weird? I wear contact lenses and I notice in the AM when I wear my glasses my font color on my macbook looks black. When I put on my contact lenses the color does not look as black. There needs to be a study about contact lenses in recovery:).....Between the wigs and contact lenses I could be a millionaire:)

 

Hoping you had a great night sleep and that your dizziness is not too bad today.

Fran

 

 

[[La...]]

Thanks, Fran, for your support and positivity. I had fewer than three hours of sleep last night, yet I'm less dizzy today. Go figure! It's fine. I'll sleep tonight, but it's a treat to be less dizzy. Woohoo!

 

At the beginning of my dizziness, I was in the midst of trying some new "multi-focal" lenses. Now that was a carnival ride! Because there were so many things that were going on at the same time, e.g. medication changes, contact lens changes, it wasn't clear what was causing what. I did get my eyes checked a number of times, and in the end, it made sense to stick with the regular lenses while all of this was going on. I'm glad I did.

 

Vision is one-third of the mix when it comes to balance. There's vision, proprioception and the vestibular system. All three need to be giving your brain the same input in order for balance to be normal.

[[Al...]]

Lapis2-does the vision come back before the balance? It's all so interesting how it all reprograms and it's fascinating to me. I have the rockiness today but I'm getting my period on Monday.

 

I have noticed my short term memory is so much better than it was when I was on Valium. I also started to do Lumosity brain training games.

 

[[La...]]

To clarify, vision is PART of what we need to stay balanced. Here's a useful quote from vestibular.org at

http://vestibular.org/understanding-vestibular-disorder/human-balance-system

 

 

"Balance is achieved and maintained by a complex set of sensorimotor control systems that include sensory input from vision (sight), proprioception (touch), and the vestibular system (motion, equilibrium, spatial orientation); integration of that sensory input; and motor output to the eye and body muscles. Injury, disease, or the aging process can affect one or more of these components."

 

So, if you concerned about your vision, you should have it checked. Proprioception is your sense of where your body is in space, i.e. info from muscles and joints, feeling the surface under your feet, etc. Check out the link above if you want more information.

[[La...]]

Hi Floaty Boaters!

I just wanted to check in and see how everyone is doing. How's your dizziness these days? As usual, mine is quite variable. I was very dizzy yesterday, but today has started off as a less dizzy day. I'm hoping it lasts for the whole day so that my tired, painful legs and feet can recuperate a bit. It's exhausting to be dizzy, as I'm sure you all know.

 

I hope you're doing better, Everyone. It's all about the ups and downs (hopefully, not down-on-the-ground, though!).

 

Lapis 

[[ca...]]

Hi Floaty Boaters!

I just wanted to check in and see how everyone is doing. How's your dizziness these days? As usual, mine is quite variable. I was very dizzy yesterday, but today has started off as a less dizzy day. I'm hoping it lasts for the whole day so that my tired, painful legs and feet can recuperate a bit. It's exhausting to be dizzy, as I'm sure you all know.

 

I hope you're doing better, Everyone. It's all about the ups and downs (hopefully, not down-on-the-ground, though!).

 

Lapis 

Lapis, being i am still tapering not sure this is the right thread to be on but must say yesterday i was prety dizzy might be withdrawl? Anyway just keeping up on the dizzy floaty buddies ~CD

[[Al...]]

Good morning Lapis2 how are you? Two days ago I experienced the rocking feeling but I still managed to work out and then it passed in the afternoon. Yesterday I had a window all day until 7:00 PM. What was my first symptom? Feeling a little rockiness and then a little anxiety. I did a relaxation exercise with Meditation Oasis and then it passed.I wonder if the two are related? Do you remember feeling them together?  I'm going to get my period on Monday lucky me...hahaha

 

I hope you had a great night sleep.

Best,

Fran

[[La...]]

Cando, dizziness can hit while you're on benzos, while you're tapering and/or when you're off the meds altogether. I became dizzy while still on the meds, so it's all par for the course. This thread is for ALL the dizzy folks around here!

 

AlwaysFrantastic, it sounds like you're doing the right things, e.g. exercise, meditation, keeping your anxiety in check, etc. I agree that anxiety and dizziness can go together, but it's not that the anxiety always causes dizziness. I was extremely dizzy yesterday and had some near-falls. That's anxiety-provoking. But one time, I got stuck in an elevator and the anxiety I felt didn't increase my dizziness at all. There was no connection. Feeling solid and stable in your body is essential. The opposite can be quite anxiety-provoking, but again, whatever we can do to keep anxiety at a minimum is a good thing.

[[La...]]

One other thought on your post, AlwaysFrantastic/Fran: I'm not sure what the connection might be, if any, between hormonal changes and the dizziness. There are just so many questions I'd like to have the answers to. The truth is, though, that hormonal changes are part of the normal experience of being a woman. Drug-induced dizziness is not! So, one will stay and the other must go. 

[[Al...]]

Lapis2-What I do know is many women who never took a Benzo feel dizzy when they get their periods. I know that getting your period usually makes the s/x's worse until you get it. I'm going to have a great weekend..hahahaha!

 

I remember in Jan while in acute w/d my BP was high. Then it was too low and I always felt a rush of dizziness in my head but that abated. My pdoc said was all from the benzo. Last night while I was doing my meditation oasis I was lying in my bed and I did feel that rush of dizziness for two seconds. I would think it's more period related since I haven't experienced that since Jan, but who knows?

Fran

 

 

[[La...]]

There seem to be different kinds of dizziness that can affect us at the same time. We've got benzo dizziness (floaty-boat), and then there's blood pressure dizziness (could be low or high, which could cause dizziness or fainting), and there's also getting-up-too-fast dizziness (orthostatic hypotension), and a number of other types (BPPV, Menieres, etc.).  It's the reason why I think it's important for people to get proper medical checks. There are different treatments for different problems.

 

 

[[La...]]

Hey Fellow Floaty Boaters!

I just wanted to put a question out there to everyone: Do you drink (caffeinated) coffee? Do you think it helps or hurts you at all? The reason I ask is because I've come across a few mentions of the role of caffeine (and other stimulants) in the process of vestibular compensation.

 

I'm not a coffee drinker at all, but I do have the odd cup of green tea or piece of dark chocolate, both of which have some caffeine. I'm just curious to hear others' experiences. I'm sure that too much caffeine is over-stimulating, but I wonder if a bit of it might be helpful. Please weigh in with your thoughts, if you want.

 

In the meantime, I'm always reading and promise to share useful information here. We all need to get better ASAP!

[[Al...]]

Hi Lapis2-I used to drink coffee every day but since C/T I now drink 1 cup of decaf and 1/4 cup of caffeine (I mix them). I can not taste the difference and it does not rev me up. No rockiness today:)

 

I hope you are having a nice day.

Fran:)

[[La...]]

Good to hear from you, Fran! I guess it's all about finding the balance. If it doesn't rev you up, but it does give you a bit of a lift, that's good. I'm so glad to hear you're not too dizzy today! I had a better day yesterday, but I'm back to the rockin' and rollin' today.

 

The literature is talking about stimulants vs. sedatives. Obviously, sedatives slow everything down, including vestibular compensation. But it's not clear whether stimulants, like caffeine, might be able to speed it up a bit.

 

Hopefully, others will chime in with their experiences too.