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

[Guest [...]]

Lapis2,I went back to coffee drinking fairly early in withdrawal,because I love the mental lift it gives me,plus I just plain love coffee!I find that one big mug in the morning is perfect and gives me a good brain lift,but if I try more than that I tend to get the anxiety jitters.Some days I can cheat with more,but not so much lately.I love coffee too because I associate it with happy memories of having coffee with my dad when he was alive,and he was a coffee person too.I hope I never have to give it up,I cant wait to get up in the morning to have it!

[[ca...]]

Lapis, i have always drank lots of coffee and still am even during this withdrawl there is a possibilty it could help but was told by my ENT Doc that caffiene would make my Tenitus worse so..... i drink it anyway but good question ~CD

[[La...]]

Ah, there's the thing! A little might be good, but too much might be bad! I guess everyone has to figure out what works, but the idea that a bit of caffeine might help with vestibular compensation is something that I've read a few times. Other articles suggest that it be avoided because it can exacerbate migraines and anxiety. It's that crazy BALANCING ACT! Yes, there's double-entendre meaning there!

[[ca...]]

Lapis, yup always a middle ground i guess and i think i will make a cup right now must say coffee is really not good for the stomach ! And hows the floaty feelings doing? ~CD

[[La...]]

Hey CD, it's a dizzy day for this dizzy dame! Blech. Thanks for asking, though!

 

Yesterday was much nicer and I felt hopeful. Today, well, today's a bit different. The variability is unbelievable. On days like yesterday, I remember that my vestibular system is working hard to normalize and it DOES know what to do. On days like today, I wish I could ask it, "What the heck is going on up there?!"

 

Then it's time to read more Success Stories and other floaty boat stories where people write, "Yes, yes it does go away!"

[Guest [...]]

About the coffee,I dont notice it makes the dizzies worse,unless I get an anxiety wave and overdo the coffee at the same time.But then Im not sure if its more the anxiety triggering more dizziness.I guess we pick our poisons,and Id rather be dizzy with alittle coffee that makes me happy and makes the dizzy stuff more bareable.I am getting more woozy days then dizzy for about two months.Its definitely easier to be woozy then full blown dizzy,which I was for over 3yrs.Ive heard a few people on the internet say that they also went from full blown dizzy,to more woozy dizzy then healed,so maybe thats a sign of a turning point in healing.Gosh,I hope so!I hope everyone is having a good saturday!Take care!

[[La...]]

Yes, 2200, I'd like to trade my dizziness for some wooziness too -- especially if it means one is closer to healing! Where can I make that trade?! I'm so glad you're on your way to healing. Great news!

 

Regarding coffee, it looks like it might be helpful in small amounts. I doubt there's a magic number of milligrams of caffeine or anything, but suffice to say, a small amount might be good. It sounds like it works for you!

[[La...]]

I came across another article on dizziness today that further demystifies what we're experiencing. It distinguishes between different kinds of symptoms and specifies which part of the vestibular system is affected, e.g. canal and/or otolith. It also explains why the type of vestibular testing that many of us had did not reflect our experience of dizziness. And for those of us who tried Vestibular Rehabilitation Therapy but didn't get noticeable results, it may be because the exercises we tried did not address the full range of canal and otolith dysfunction.

 

The article intersects nicely with one of the other articles I shared earlier in this thread, in which the authors pinpoint which specific area of the vestibular system is suppressed by benzodiazepines. It's called the utricle, which is one of the "otolith" organs.

 

Here are some useful excerpts from the article, followed by a link, should you wish to read more:

 

"Tomanovic and Bergenius [3], who studied the prevalence of different types of dizziness symptoms in subjects with P-VeD, expanded the understanding of subjective descriptors by concluding that in addition to the classic symptoms of vertigo, the presence of “nonclassical” symptoms, such as drop attacks, unsteadiness like walking on a boat, walking on pillows, stepping into a hole, and feeling like being pulled to one side, occur in these individuals. In Tomanovic’s study, only tests of canal function, and not otolith function, determined the diagnosis of P-VeD. It is not known whether the otolith organs (e.g., utricle and saccule) were also damaged and may have contributed to the subjects’ symptoms, especially the “nonclassical” symptoms.

 

Advances in vestibular function testing procedures has identified otolith dysfunction [6, 9–11] and several investigations have reported that subjects with otolith dysfunction described their symptoms as feeling like sensations of rocking, tilting, walking on pillows, being pushed or pulled, feeling drunk, and falling [7, 12]. Even though these descriptions were only anecdotally associated with P-VeD, it questions whether the limited focus on symptoms of rotary vertigo impedes the diagnostic process. Consequently, by focusing on rotary vertigo as the symptom associated with P-VeD, successful management, including selection of appropriate vestibular rehabilitation (VR) strategies, may be hindered."

 

From the Discussion section:

 

"The distinct impairments found in individuals with canal versus otolith dysfunction also support further investigation to identify whether use of exercises strategies that optimally stimulate residual function specific to the involved vestibular mechanism would improve outcomes in VR."

 

The full article can be read here:

 

http://www.hindawi.com/journals/isrn/2014/629049/

 

Of course, the article we all want to see is one which outlines the exercises we need to do to address these specific symptoms. Perhaps the answer is out there. In the meantime, hang on tight, Everyone! Stay strong! Stay afloat!

 

 

 

 

 

 

[[Co...]]

Hi dizzy friends, just thought I would chime in on the coffee question. I am a coffee addict.  One of my most favorite things in the world. Everybody who knows me gives me wonderful expensive coffee and coffee paraphernalia for Christmas. I used to drink it full leaded right before bedtime....no problem. ....Since w/d I have tried completely eliminating it, but I couldn't see a pattern of cause/effect. Sometimes it would put my physical anxiety right over the cliff.  other times not so much as as a single jitter. I just hate to give up one more thing out of my life to benzo w/d so I have half caf every single morning. Some mornings I have a little uptick in my anxiety....sometimes nothing at all . But I will tell you, I enjoy it tremendously every morning

.....So that is no help but just thought I would jump in..

...Hope everyone is getting some breaks from the dizzy sx today. ...I am having major boatyness and caved with 12 mg of Bonnie.  I try really hard not to, but sometimes I just have to have some relief to get things done in my life.

....I had a stretch of relief from dizziness in months 12-14.  Now I have been in a wave of it for 4/5 weeks...with cycling thick d/p/r.......Has anybody on this thread used dramamine? I know it suppresses the vestibular system ...but does that mean it delays the compensation process? The answer to this is probably in some of the links that have been shared, but I don't remember what they said about one time use of dramamine from time to time. ...thanks  boat friends....coop

[Guest [...]]

Hi Cooper!No,I havent tried Dramamine.I read that is caused dizziness as a side effect,and some other stuff and I just wasnt tempted to try it,as I always seem to get side effects with most meds.I read on Peoples Pharmacy online(I get their weekly emails about health,natural cures and RX meds)that the dizzy drugs are on the list of drugs that can cause forgetfullness,like dementia and alzheimers over time.Sleeping pills and benzos were also on the list,but most of us have heard that from our benzo reading.Sorry to mention that about the Dramamine,especially if its working for you,I dont want to be a gloomy gus,just thought Id mention it from the newest info on them.If you guys havent checked out The Peoples Pharmacy online,its worth a look,they also talk about benzos and people comment on them,so its interesting.You can sign up to get their emails on health to get some of the latest info out there.I know I was glad to get a couple emails where they talked about benzos.Hope everyones having a great day!

[[Co...]]

Thanks for the reply 2200..Yes, I think you are right about the dramamine...not a good idea . I think the only way through is through. I think it would be fine on a one time basis for dental/medical appointments as an alternative to benzo but I am just going to have to ride out the dizziness and it's sibling anxiety.

....Thanks for the heads up on People's Pharmacy...sad that we have to scrambe around and look up different sites to get full information about medications. This thread is extrordinary for posting links to good information.

.  .How are you doing?    coop

[[La...]]

Hey Coop and 2200, good to hear from you again!

 

Any of the "vestibular suppressants" (benzodiazepines, antihistamines, anticholinerics, antiemetics) can make it harder to normalize the vestibular system. It's best to avoid them and just push on through since they'll extend the length of time it takes for your vestibular system to "compensate", i.e heal from taking the benzos.

 

I wish I'd known this earlier, since I continued to take them for two years after I became dizzy. I had no idea what was causing my dizziness at the time, and had I known, I would have tapered off much, much sooner. It's a regret that I will carry with me forever.

 

From Austrialia, here's a list of medications that can increase the risk of falls:

 

http://www.health.vic.gov.au/agedcare/maintaining/falls_dev/downloads/B1E8_3%285%29%20and%20B2F5%20Falls%20related%20medication%20side%20effects.pdf

 

This page from the Vestibular Disorders Association is excellent for info about medications and dizziness:

 

http://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-medication

[[Co...]]

Thank you Lapis for another great link. It has truly given me the information I need to avoid the Bonnie. It's so difficult to choose dizzy and miserable over the short term relief of the dramamine. I get such terrible anxiety with mine. My ENT explains the panic that comes with dizziness as ' veztibular' meaning it originates in the CBS ...in other words the flight/fight response is PART of the dizziness not because of the dizziness. From that follows a somewhat generalized and learned anxiety.. the well known ' fear of the panic' .anticipatory anxiety. So I think his explanation fits into the ' acute' and ' chronic ' definitions....throw in the w/d sx of anxiety and it's a mess. Today has been exactly like early avute... miserable beyond miserable. Riding it out and the article helped a lot.

.....So you have been waiting for your ears,to compensate for 2 years?...I was on Ativan for about 2 years as well...and now off for about 17 months with a 6 month taper prior and at least 6 months in tolerance prior to that. ..What I want to know is how people just carry on with thier lives with constant dizziness and/or boatyness...Do you work from home? ...Are you able to drive? .  Do you have reliable periods,of relief from it?

......This is a very helpful support thread..  thank you again for starting it.....coop

[[pr...]]

i am able to drive with the dizzineses/ boatyness/undulating -- i don't know how but i am and have been since the very beginning.

 

some people often say that while they are driving they feel releif from the boatyness. interesting huh?

[Guest [...]]

Lapis,Cooper,Daisy,You guys share the best dizzy info!I also can drive with the dizziness,for some reason it doesnt get me there,only when Im tipping my head forward or sideways while walking and moving around.For some reason,I am not dizzy or woozy today.I swear this is the first day ever,Ive felt this way!I was doing a few things in the yard and right away noticed I could walk normally and my eyes werent all weird from the off balance feeling.I actually felt good too!Such a new feeling for me!I so hope this is going to last!Ive been dizzy for over 3 1/2 yrs.and I have felt so down,and would cry at times,thinking like this will never end.It limits your life in so many ways,and sets off more anxiety about whatever you have to do in the day.You guys know what Im talking about!I was noticing that the really dizzy days in the last two months were getting mixed in with woozy days,sort of back and forth.I probably mentioned before,that for me woozy is lighter than dizzy,still feels awful,but is alittle easier to cope with and doesnt set off as much anxiety.I remembered Dr.Jennifer Leigh mention that she went from dizzy to woozy,then she started to feel so much better,so that does give us some encouragement!She also was dizzy for a very long time.I remember a few months ago how just cooking in the kitchen used to be so depressing when I would tip my head down to do something on the stove or counter,it set off the worst dizziness.Grocery shopping and with those weird store lights was the worst.Mine never got much better as the day went on,it was always there.Thanks for your posts you guys,it sure helps! 

[[La...]]

Coop and prettydaisys, I've definitely read many times now that people with this kind of dizziness find it lessens, or is less noticeable, while driving or in a moving vehicle. It seems that one thing cancels out the other. I can't drive at this point, but it seems that others can, depending on their situation.

 

And yes, I've been off the medication for 22 months now, and yes, I'm still waiting for things to settle down. I was on the benzos a total of 6.5 years (including the taper), but I also took Prozac in the midst of things. Prozac and diazepam can interact, and the SSRIs can cause dizziness as well. I tapered off that last year and my dizziness went through the roof. I also had strange light shows each time I turned my head, accompanied by tingling in my face, and it all went on for months. I wish I'd never taken that medication.

 

Coop, that dizziness/anxiety link is completely understandable. I recently posted about this issue after re-reading a section of Dr. Norman Doidge's book, "The Brain That Changes Itself". He was describing a woman whose vestibular system had been destroyed by gentamicin, an antibiotic. The descriptions of our need to feel "stable," "grounded", and "balanced" really touched a nerve for me. We all want and need that. It's completely unnerving to feel like the floor is moving or your body is tilting or being pushed or pulled. I've said many times that no one can truly understand this sensation unless they've experienced it. I'm glad there are empathetic counselors, doctors and therapists out there, but to really get it, it must be experienced. Then again, I don't wish it on anyone.

 

All we can do is do our best, and remember that our bodies are healing, even if we still feel like *@#$. But it's very important not to take medications that can further interfere with vestibular compensation. The vestibular system has to experience imbalance in order to get back in balance! It's not fun, but it has to be done.

 

Life lies waiting on the other shore for us, and we need to get off the boat in order to get there! I wish everyone here strength of soul on the journey. You're not alone!

 

 

[[La...]]

Lapis,Cooper,Daisy,You guys share the best dizzy info!I also can drive with the dizziness,for some reason it doesnt get me there,only when Im tipping my head forward or sideways while walking and moving around.For some reason,I am not dizzy or woozy today.I swear this is the first day ever,Ive felt this way!I was doing a few things in the yard and right away noticed I could walk normally and my eyes werent all weird from the off balance feeling.I actually felt good too!Such a new feeling for me!I so hope this is going to last!Ive been dizzy for over 3 1/2 yrs.and I have felt so down,and would cry at times,thinking like this will never end.It limits your life in so many ways,and sets off more anxiety about whatever you have to do in the day.You guys know what Im talking about!I was noticing that the really dizzy days in the last two months were getting mixed in with woozy days,sort of back and forth.I probably mentioned before,that for me woozy is lighter than dizzy,still feels awful,but is alittle easier to cope with and doesnt set off as much anxiety.I remembered Dr.Jennifer Leigh mention that she went from dizzy to woozy,then she started to feel so much better,so that does give us some encouragement!She also was dizzy for a very long time.I remember a few months ago how just cooking in the kitchen used to be so depressing when I would tip my head down to do something on the stove or counter,it set off the worst dizziness.Grocery shopping and with those weird store lights was the worst.Mine never got much better as the day went on,it was always there.Thanks for your posts you guys,it sure helps! 

 

Oh 2200, I am SO happy for you! Congratulations! It's great news that you're having a good day. Hang onto that good feeling and know that you're getting there -- or maybe you ARE there. Your story gives the rest of us hope. Thank you for sharing it with us!

[[Al...]]

Lapis2-How did I not check in with my dizzy group today? Good news....I slept all night last night. Bad news...I'm going to get my period tomorrow or Tuesday and I started to feel the rockiness. I guess we can't have it all?

 

I hope everyone had a great weekend.

Fran

[[La...]]

Ah, the joys of womanhood! Glad to hear you slept well, Fran. I think sleep evens out over time, like the rest of the symptoms. Your exercise and meditation probably help a lot with that too. Have a good night!

[[pr...]]

i had some dizziness and a very scary black out the other day when it was really hot here. it really scared me. but passed very quickly thank god.

 

i am now remembering about 2 days after i got home from the detox after the cold turkey, i was sitting in my doctor's office waiting room and i could literally feel this vortex of spinning energy that was extremely strong that would start at my feet and work it's way up my whole body and then leave through my head and then come back down my head and go back down my body. it's like it had this spinning energy and a life of it's own. i had never been so freaked out. i was also on the phenobarbital at time that the detox sent me home with and i couldn't tell if it was from the pheno or benzo withdrawal? i stopped the pheno right away. maybe even sooner than i should of. i really didn't know what was happening to me at the time.

 

so glad all that is over now.   scary scary scary!

[[ca...]]

Day 12 after my last cut whoa ! Dizziness from hell took way long to write the monthly bill out just now hope this settles down !  ~ CD

[[La...]]

Oh noooo, can do! Sounds like you're in wavy waters. Just hang in there, okay? I had one of those days yesterday, and clearly, it's all part of the carnival ride we call benzodiazepine withdrawal. Today is easier for me, and I hope you get a break too.

[[ca...]]

Oh noooo, can do! Sounds like you're in wavy waters. Just hang in there, okay? I had one of those days yesterday, and clearly, it's all part of the carnival ride we call benzodiazepine withdrawal. Today is easier for me, and I hope you get a break too.

Lapis, thanks and yes for sure holding tight today and hope you get feeling better this sure is crazy but i guess it`s part of the `w/d most of us have to deal with but  to be honest i never signed up for this  ~CD

[[La...]]

Yes, where do we UN-sign up for this?! Oh my goodness, it's a bit much, isn't it? I keep thinking about others who have gone before us, though. They survived, their bodies healed and they arrived safely on solid ground. It has to happen for us too, right? Right! In the meantime, I'm hoping to come across something that can speed up the process a bit.

[[Mo...]]

Hey everyone. . I wanted to share something with all of you. Aside from the usual pulling and pushing and boatiness, a handful of times, I have been just about sleeping late at night and been hit with vertigo. I am not moving at all when this happens and my eyes are closed. All of a sudden, it feels like I am on a merry go round and someone is spinning me. It's very scary! My initial reaction is always get up and panic. Last night, I did that, but I was so sleepy, that I layed back down. It started happening again and I could feel my eyes moving around. Instead of getting up, I forced myself to do some multiplication in my mind, 2x2=, 2x3=......I went through every number. It completely stopped the spinning. I fell asleep doing this. Isn't that strange?? Does this mean that distracting your brain is all it takes to stop this?? Is it all in my head?? I don't think this would work with the usual boaty stuff as you are walking around, but definitely when you are resting.