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

[[Lo...]]

Loving Mother...Minnie has a success story update on the success story board. She suffered head pressure and I believe also boatyness for 7 solid months without let up. She is completely healed now ( I think somewhere around 12 months)..My heart goes out to you. I can't take my dog out on some mornings with confidence...I can't imagine trying to manage a job and raising a young child through this. ...coop

 

Oh yes, I stay in touch with Minnie. I've read her story multiple times.

 

Its hard, I cry a lot of mornings...its disturbing. Today my 3 year old heard me, came in and hugged me & wiped away my tears.

 

Its an invisible disability.  :'(

[[La...]]

LM, I was just talking about that "invisibility" with someone. It's true, except in my case, my leg and foot muscles are extremely tight and full of trigger points as a result of dizziness. Those things CAN be palpated and they reflect strange movement patterns. So, while no one can "see" the dizziness, they might be able to feel the results of it in your tight muscles.

 

I too cry just about every morning. It's hard not to. It's exhausting and debilitating, and I just want it to end. Your 3-year-old is undoubtedly a sensitive and caring little one, if s/he (?) reached out like that. Wow! What a lovely thing to do!

 

By the way, if Minnie has a story posted about her dizziness ending, please post a link. I'm sure we can all use a boost. I, for one, am having a really floaty boaty day. 

[[...]]

please to add my somewhat rare symptom, "rocking and pulsating to rhythm of heartbeat" to your list.  Feeling very alone with that one, would love to hear from any others who are in that particular rocky boat.

 

abcd,

 

i know that kitkat shares this rocking and pulsating to the rhythum of hearbeat and i can feel sometimes myself. i think that maybe the floaty boat sensation also has to do with blood pressure and innder ear stuff. just whole stuff. i am able to read most times now except for what happened with my eyes the other night using some allergy relief eye drops that almost sent me to the ER.

 

Yes, Pretty, KitKat and I seem to be the only two BBs in the same pulsating boat.  I did give her a call-out to come and keep me company here. 

 

My A Little About Me story now:

 

I'm unique in that there's no vestibular connection with my particular rocking and bouncing and no balance issues when standing or walking.  I have this constant pendulum swaying 24/7 throughout my body in time with my heartbeat, and felt most severely when sitting or lying down.  The non-stop sensations of muscle movement and turbulent blood gushing makes it feel like I have a washing machine chugging in my head and bod.  It's visible too, it shows in the form of a very slight tremor that literally shakes my whole body.  When I apply pressure on muscles, the pulsing sensation is palpable. 

 

Sitting normally is near impossible as the chugging in my torso and upper back is severe, pushing, pulling, swaying, rocking, bobbing, excruciatingly uncomfortable.    When I'm lying down, I have no sensation of the surface under my legs and lower torso, just the rocking and bobbing pulsing sensation, and my lower legs are often very tingly too.  My upper body/neck/head/face muscles are extremely tight 24/7 too.  I do believe in my case there's a clear connection between the muscle tension and my rocky boat.

 

So yes, I don't really fit in this group in the true sense, what's new, huh, don't fit in anywhere really  but I'm hanging around just in case.  Plus, I need to keep an eye on Lapis, make sure she's not fooling around on the job and all that.    You rock, Lap!  No seriously now, you really do! 

 

If anyone else can relate or knows of anyone who this sounds like, I'd love to hear from you!

 

Wishing better days for all.  Hang on, guys, and hang in!

 

 

 

[[Lo...]]

LM, I was just talking about that "invisibility" with someone. It's true, except in my case, my leg and foot muscles are extremely tight and full of trigger points as a result of dizziness. Those things CAN be palpated and they reflect strange movement patterns. So, while no one can "see" the dizziness, they might be able to feel the results of it in your tight muscles.

 

I too cry just about every morning. It's hard not to. It's exhausting and debilitating, and I just want it to end. Your 3-year-old is undoubtedly a sensitive and caring little one, if s/he (?) reached out like that. Wow! What a lovely thing to do!

 

By the way, if Minnie has a story posted about her dizziness ending, please post a link. I'm sure we can all use a boost. I, for one, am having a really floaty boaty day. 

 

Thank you :-) I have a son :-) he's a gem. If it weren't for him I would not be as far as I am in my healing. I just came from the pulmonary doctor and had to walk very slowly across the building for a chest x-ray. The walk was horrible and I used the hand rails along the way because I was rocky and my legs were weak. But I made it.

 

I have shortness of breath and while it is a sxs of benzo w/d I had it before benzos when I was diagnosed with Lyme. Lyme and benzo w/d=zero!!!!

 

Anyway here is one of Minnie's success stories. Going to find the other one:

 

http://www.benzobuddies.org/forum/index.php?topic=128527.0

[[La...]]

Hey, abcd! It's so good to see you again! We keep bumping into each other on this thread and that, and it's great to "have you on board", as all good sailors say. Boy, you know, we could keep these puns going and perhaps we should. We all need a few smiles and chuckles through the tears.

 

Thanks for your company and for telling us your story. Although we all share some aspects of this journey, everyone's story is ultimately unique. You're welcome here, of course, and perhaps someone else can jump in if they've had similar experiences. Also, I'm glad you're "keeping an eye" on me! I need pals here, there and everywhere!

 

Here's a different take on your situation: Maybe you're a bit lucky, in that there's a rhythm to your movement. Mine just feels like a raging ocean with the waves hitting me from every direction so I can't find any calm or rhythm in it at all. Ah well. The truth is that it's all irritating as hell, and whether there's rhythm or not, we all just want these sensations to stop!

 

NOW!

 

Take care, abcd. Thanks again for "splashing about" with us! (Ugh. Sorry!)

 

[[Lo...]]

Hey, abcd! It's so good to see you again! We keep bumping into each other on this thread and that, and it's great to "have you on board", as all good sailors say. Boy, you know, we could keep these puns going and perhaps we should. We all need a few smiles and chuckles through the tears.

 

Thanks for your company and for telling us your story. Although we all share some aspects of this journey, everyone's story is ultimately unique. You're welcome here, of course, and perhaps someone else can jump in if they've had similar experiences. Also, I'm glad you're "keeping an eye" on me! I need pals here, there and everywhere!

 

Here's a different take on your situation: Maybe you're a bit lucky, in that there's a rhythm to your movement. Mine just feels like a raging ocean with the waves hitting me from every direction so I can't find any calm or rhythm in it at all. Ah well. The truth is that it's all irritating as hell, and whether there's rhythm or not, we all just want these sensations to stop!

 

NOW!

 

Take care, abcd. Thanks again for "splashing about" with us! (Ugh. Sorry!)

 

Lapis and others I will say this. When we are totally better we should go on a cruise! We will be pros on how to handle the rocking boat sensation! 

 

There was an old post...I wish I could find it. A guy who was healed had this as a symptom but still went on his vacation (a cruise). He said he had an amazing time!

 

Why???

 

Because the ship is constantly rocking, he felt normal while others felt sick. Once he got off though he still had the sensation (but so did everyone else). I wonder how he is doing. I forgot who but remember the story.

[[Lo...]]

Here is Minnie's other success story

 

http://www.benzobuddies.org/forum/index.php?topic=118091.0

[[Lo...]]

A fantastic post by Parker!

 

http://www.benzobuddies.org/forum/index.php?topic=51940.0

[[La...]]

Hey LovingMother, it's funny you should suggest that! I was talking to someone recently who asked that very question. "What would happen if you went on a boat?" Well, I tried to do it online (!) by finding sailing videos where the person wore a camera and we, as viewers, had his viewpoint as the captain of the boat. Ah well, it didn't work so well, but as someone who grew up sailing, I enjoyed the idea of sailing even so.

 

It does make sense, though, that one sensation would cancel out the other. I've read about people who find that sitting in a moving car makes the dizziness disappear for awhile, when a "normal" person would actually feel the movement of the car and might get motion sickness. It's all down to the vestibular system.

 

I loved what you wrote about your son....the "gem"! Soooo nice! Love. It's grand!

[[Lo...]]

Hey LovingMother, it's funny you should suggest that! I was talking to someone recently who asked that very question. "What would happen if you went on a boat?" Well, I tried to do it online (!) by finding sailing videos where the person wore a camera and we, as viewers, had his viewpoint as the captain of the boat. Ah well, it didn't work so well, but as someone who grew up sailing, I enjoyed the idea of sailing even so.

 

It does make sense, though, that one sensation would cancel out the other. I've read about people who find that sitting in a moving car makes the dizziness disappear for awhile, when a "normal" person would actually feel the movement of the car and might get motion sickness. It's all down to the vestibular system.

 

I loved what you wrote about your son....the "gem"! Soooo nice! Love. It's grand!

 

Thanks Lapis! He's my pumpkin, my sweet potato pie, my cutie pie...my ace...my everything. His dad is really missing out (hasn't seen him in 7 months and counting). Oh well...his choice.

 

As for the sxs cancelling out...yep that is what happened with this guy lol.

[[La...]]

You are doing great, LM! You're a wonderful mom and you're getting out there and you're doing so well! Good for you!

 

By the way, your son sounds delicious -- PIE!

 

Thanks, too, for posting the link to Parker's post. It's so beautiful. The power of words. Awesome. We don't really know each other, but yet, someone from across the great divide can put something down on paper/online and wow, we're moved, we're touched, we're slightly changed by it. Lovely!

[[Lo...]]

You are doing great, LM! You're a wonderful mom and you're getting out there and you're doing so well! Good for you!

 

By the way, your son sounds delicious -- PIE!

 

Thanks, too, for posting the link to Parker's post. It's so beautiful. The power of words. Awesome. We don't really know each other, but yet, someone from across the great divide can put something down on paper/online and wow, we're moved, we're touched, we're slightly changed by it. Lovely!

 

Thank you Lapis! I needed to hear that. It's so hard. I want to be super active again...so much I want  to do and I can't. That post from Parker is amazing! The power of the pen! 

[[La...]]

Yes, the power of Parker's pen! Perfect!

 

You know, if we were all in the same vicinity, we'd be supporting each other with hugs, pep talks and phone calls. We'd be reminding each other to keep going, that we're going to make and that we're here for one another. But in the absence of that, we've got BB, and I'm feeling pretty lucky that we've all landed in this virtual spot. Can you imagine going through these things without the benefit of the internet? I shudder to think how others survive without good information or support. 

[[Lo...]]

Yes, the power of Parker's pen! Perfect!

 

You know, if we were all in the same vicinity, we'd be supporting each other with hugs, pep talks and phone calls. We'd be reminding each other to keep going, that we're going to make and that we're here for one another. But in the absence of that, we've got BB, and I'm feeling pretty lucky that we've all landed in this virtual spot. Can you imagine going through these things without the benefit of the internet? I shudder to think how others survive without good information or support. 

 

I know!!! I could not imagine...I really couldn't! Thank God for BB! 

[[La...]]

I didn't get to respond to your yearnings to be active again. Oh my goodness, I can certainly relate to that! I was very, very active, and I want my body back NOW! I know, I know. I can't have it now. Parker's post has just reminded me to be patient and that we can't get around this stuff so we have to go through it. But it's almost SPRING and I wanna play! I just want to get back to being "me".

 

 

[[Lo...]]

I didn't get to respond to your yearnings to be active again. Oh my goodness, I can certainly relate to that! I was very, very active, and I want my body back NOW! I know, I know. I can't have it now. Parker's post has just reminded me to be patient and that we can't get around this stuff so we have to go through it. But it's almost SPRING and I wanna play! I just want to get back to being "me".

 

Oh yes! The temps are going up! Here in the DC area is the Rock n Roll Marathon this weekend. I wanted to cry...signage is everywhere :-(

 

Something to strive for!!!

 

Here is another healing post. This is from lost dog on the success story board:

 

"Concentrate on the symptoms that are better or you no longer have. Don’t think about what is still wrong. Compare yourself with six months ago and you can see the difference. If you concentrate on the symptoms you still have it doesn’t feel like you’re making progress. Between 18 and 20 months I was on autopilot. I just kept going, feeling like it would never completely go away and I would never be the same again. I had come to terms with that, and then a month later realized that I was beginning to want to do things again. I noticed my speed of thought was increasing weekly and my cognitive precision was back. My memories are now back in order and I am able to recall them in vivid detail, but now they have time tags on them and no longer just pop up randomly.

 

Physically and mentally I feel as good or better than I have in ten years. I have recovered completely and have no lingering effects. My success story has no qualifiers. It has been 22 months and I’m like new.

 

For some reason, 12 to 18 months was the most difficult. I think it’s because you’re so exhausted and feeling hopeless. After 18 months it begins to get better but you feel like you’ll never be the way you were before, that there will always be some lingering symptoms. For me it began to really accelerate at around 20 months. I could tell I was beginning to get better but I had given up on being the person I once was.

 

I have been waiting to write this until I was positive I was completely healed.

I am."

Thank you everyone for all your help and support during the last two years. It made all the difference to know I wasn’t alone. Neither are you. You will get better. I promise.

 

[[La...]]

Here are a few more useful resources:

 

1.  This updated information from the British National Formulary about benzodiazepines states that it can take 6-18 months after the last dose of a taper for symptoms to resolve (see "Dependence and Withdrawal"). For some it may take more time and for others, less. It's a good reference document.

 

http://www.benzo.org.uk/BNF.htm

 

2.  This is the section of the Ashton Manual that refers to balance issues during benzo withdrawal. She notes that the process of stabilization can continue "until the process is complete":

 

"Problems with balance. Some people during benzodiazepine withdrawal report feeling unsteady on their feet; sometimes they feel they are being pushed to one side or feel giddy, as if things were going round and round. An important organ in controlling motor stability and maintaining equilibrium is a part of the brain called the cerebellum. This organ is densely packed with GABA and benzodiazepine receptors (See Chapter I) and is a prime site of action of benzodiazepines. Excessive doses of benzodiazepines, like alcohol, cause unsteadiness of gait, slurred speech and general incoordination, including inability to walk in a straight line. It may take some time for the cerebellar systems to restabilise after benzodiazepine withdrawal and the symptoms can last until this process is complete. Exercises, such as standing on one leg, first with eyes open, then with eyes closed, can speed recovery."

 

3.  This study followed people for a whole year after they completed a benzodiazepine tapering. Four different patterns were noted, and it showed that many still had symptoms at that one year mark. I haven't come across any studies that followed people after one year. Another study I read followed people for only six months and concluded that the people who still had symptoms might have them for life. I found that to be most unscientific and fairly distressing. I'd like to see more high-quality studies in this area.

 

http://www.ncbi.nlm.nih.gov/pubmed/20629611

 

 

 

[[Lo...]]

Here are a few more useful resources:

 

1.  This updated information from the British National Formulary about benzodiazepines states that it can take 6-18 months after the last dose of a taper for symptoms to resolve (see "Dependence and Withdrawal"). For some it may take more time and for others, less. It's a good reference document.

 

http://www.benzo.org.uk/BNF.htm

 

2.  This is the section of the Ashton Manual that refers to balance issues during benzo withdrawal. She notes that the process of stabilization can continue "until the process is complete":

 

"Problems with balance. Some people during benzodiazepine withdrawal report feeling unsteady on their feet; sometimes they feel they are being pushed to one side or feel giddy, as if things were going round and round. An important organ in controlling motor stability and maintaining equilibrium is a part of the brain called the cerebellum. This organ is densely packed with GABA and benzodiazepine receptors (See Chapter I) and is a prime site of action of benzodiazepines. Excessive doses of benzodiazepines, like alcohol, cause unsteadiness of gait, slurred speech and general incoordination, including inability to walk in a straight line. It may take some time for the cerebellar systems to restabilise after benzodiazepine withdrawal and the symptoms can last until this process is complete. Exercises, such as standing on one leg, first with eyes open, then with eyes closed, can speed recovery."

 

3.  This study followed people for a whole year after they completed a benzodiazepine tapering. Four different patterns were noted, and it showed that many still had symptoms at that one year mark. I haven't come across any studies that followed people after one year. Another study I read followed people for only six months and concluded that the people who still had symptoms might have them for life. I found that to be most unscientific and fairly distressing. I'd like to see more high-quality studies in this area.

 

http://www.ncbi.nlm.nih.gov/pubmed/20629611

 

These are great! Thank you!

[[La...]]

You're welcome! Glad to share!

 

Thanks for that uplifting post, LM. I know I've read it before, and really, until I feel this symptom go, I'm hard-pressed to believe everyone. I'm sure I'm not so different that everyone else on that matter. I need to feel it to believe it.

[[Co...]]

I love this thread so much!....In regard to the idea that motion helps settle the sense of boatyness. This is just a very subjective observation ...but , I use a motorized wheelchair due to debilitating RA ( a picnic next to w/d) . I started noticing last spring as I started going outside more that my sx always felt better while outside moving....and part of my motion disturbance has always been that I had a greater sense of undulating and swaying after stopping being in motion.Like my chair stopped moving but my body was still in motion. I felt this internally rather than externally as in my body was moving.  the world was not. I think that is a distinction between rotational vertigo and ( feeling like the room is moving) and undulating ( feeling that your body is moving but the environment is stable)

.....This thread has fascinating information that is so helpful to defining, articulating and understanding the many ways in which " dizziness " and " vertigo"  is experienced . Undulating sensation. d/r and pretty heavy cog fog seem to be intertwined for me on most days in which I have the motion disturbance ( frequently since this last wave)

......On a better note....even though the last wave I had ( lasted about 8 day ....exactly like early acute), my sunbreaks and open windows in the last few days have been as well, the best windows that I have experienced along the way ...at 16 months + about a week. Sunday was a long wonderful 12 hour effortless mind day...heaven, Monday was back to acute...Tuesday had several hours of open window absence of sx....today has been a half day of effortless mind.. and mild undulating and moderate d/r this afternoon...no other sx.

......I am definitely starting to not get so freaked out about motion disturbance and d/r...because of this thread...I am cautiously thinking that I could start doing more even with undulating and slight d/r .if other sx heal.

....I have read some intestine things about the Vagus nerve and how it greatly impacts panic, balance, digestion and b/p and heart rate. If I can find some links I will try to post them. It is my suspicion that benzos can't help but have a big impact on the Vagus nerve.  ..

.....I apologize for the long post. I suspect that for me, this may be a sx that hangs on to the very end...but one that I could live with reasonably until it heals. ....Wishing everyone relief and sunbreaks from all of it....coop

[[La...]]

Coop, that's fascinating, i.e. that your sense of motion goes away when you're riding in your wheelchair! I've read about this quite a few times now, and it's logical from a vestibular point of view. If it works for you, do it! It seems like you've got a good attitude as well, which is a big part of the battle. Congrats on those nice windows you described.

 

In my case, I rate my dizziness on a scale of 10, and a 6 is awesome for me. Today's an 8, though, and I'm really feeling it. I've had many, many 9s recently, and they're just brutal, but I'm keeping my fingers crossed for more 6s and 7s.

 

Also, I'm really glad that you're finding things on this thread that are helpful to you. It's good for all of us to connect, since we all "get it". I've still got a few more good pieces of info to share, and I'm always looking out for more. I figure this thread can serve as a useful resource for anyone experiencing this symptom.

 

I, too, wish everyone well. It's got to end sometime, right?! 

[[Co...]]

Lapsis, your story reminds me of Minnie's. Her head sx were constant and then at month 7...they let up. And didn't come back. I am wishing the same for you. It is wonderful to have articles to read...it takes some of the focus off of sx ( although in a bad wave I am engulfed in sx no matter what).

....Reading and tilting my head to the right  ( my affected ear) also sometimes triggers moments of true dizziness. Does rea ding on your screen ( I use a note 4 with a fairly large screen, but I notice I can't be on it for long periods without some eye/motion disturbance)  ?...

...Lapsis, I wish this was not so persist for you. So glad you started this thread....coop

[[La...]]

A few more interesting studies:

 

1.  This one looks at the cumulative effects of some benzodiazepines on fall-related risks in the elderly. I'd been wondering about the issue of accumulated effects for quite some time before I found this study. One of the things that I've noticed a lot when reading studies about falls and fractures is that there's little mention of what precedes the fall. DIZZINESS, of course! These people don't just fall down suddenly. They lose their balance, become unstable, and then they fall. I wish that was noted because it's a major factor in the chain of events, and without noting that, these studies might be missed when looking at dizziness as a major side effect of benzodiazepines.

 

http://www.academia.edu/6908895/Assessing_the_cumulative_effects_of_exposure_to_selected_benzodiazepines_on_the_risk_of_fall-related_injuries_in_the_elderly

 

2.  This other study looks at the "risks and benefits" of benzodiazepines. Our current affliction comes under the category of "psychomotor effects", and as in the above study, there's a mention of the increased effects of longer-acting meds and the slower elimination time. As in other studies, there's a focus on things like motor vehicle accidents and falls, yet there's no mention of DIZZINESS. An associated issue that's also not mentioned is slower reaction time, which, coupled with dizziness, can be extremely hazardous.

 

"Psychomotor effects

Benzodiazepine administration can result in an impairment of

performance whilst driving similar to that seen with blood alcohol

levels below the current UK legal limit, the magnitude of

effects being influenced by the drug, dosage and other factors.

There is also an interaction with alcohol that potentiates the

degree of impairment seen with either drug alone.

Pharmacoepidemiological studies suggest that benzodiazepine

use is associated with an increased risk of road traffic accidents,

over and above that seen with untreated mental disorders. Patients

should be advised to contact the Driver and Vehicle Licensing

Agency (DVLA) when they are taking medications that may

impair driving performance, and to avoid drinking alcohol. Due

to drug accumulation, use of drugs with longer half-lives may be

more hazardous than use of drugs that have a shorter half-life.

Elderly patients are more vulnerable to the cognitive and psychomotor

effects of benzodiazepines and eliminate long-acting drugs

more slowly than younger patients, and an increased risk of falls

should be considered when contemplating possible benzodiazepine

prescription to such patients."

 

Here's the whole study:

 

http://www.bap.org.uk/pdfs/Benzodiazepines_Guidelines_2013.pdf

 

 

[[ch...]]

So glad to find this thread.  I've had constant dizziness for almost 5 years, after increasing ativan dose, and having episodes of severe vertigo. I immediately reduced the dose again, but was left with constant dizziness.  There hasn't been an awake moment since then that I have not been dizzy.  Many tests, neurologists, MRI, etc., ruled out various causes, but couldn't find what was the cause.  No one thought is was the ativan, of course.

 

I finally was able to get off ativan in October 2014, and hoped hoped hoped that would help, but so far the dizziness continues.  I am so exhausted by it, and it is invisible, and hard for others to understand just how debilitating it is.  My life has been reduced to bare necessities. 

 

Symptoms:

constant feeling of falling over -- hard to describe

exhaustion (brain has to work so hard to keep balance, nothing left over)

severe brain fog (never had before this)

great difficulty reading or working on computer

moving head or eyes makes it worse

severe short term memory loss (much worse than ever)

roaring, buzzing sound, tinnitus

 

I can read if I lie on my back with my head perfectly still.  Using the computer is harder, because sitting is so hard.  I end up with my neck muscles very tight from holding my head up.

 

From what I understand, the brain is receiving conflicting or weird messages from the vestibular system and can't interpret them, so works overtime, resulting in exhaustion, depression, anxiety, etc.  Balance is one of the basic functions and the brain puts a higher priority on it than short term memory or emotional control.

 

I'm about to start vestibular rehab physical therapy -- which I tried once before.  I'm hoping that being off ativan my brain might be able to learn how to compensate. 

 

I try to remember that I am tired and so depressed because of the dizziness, because my brain is tired and doesn't have any reserves.  But it is hard.

 

I just looked through a book by Sue Hickey, Finding Balance, and she had such severe vestibular problems, it's truly amazing how she has found her way to some peace with it. 

[[La...]]

Hi Charlotte!

Welcome and thanks for joining in the conversation! I'm so sorry to hear that you're in the "same boat" as we are here, but it really does sound like your symptoms are the same as ours. And you've just come off the medication relatively recently, so I'm not surprised that you're still suffering. I think patience is the key here since the vestibular system can take awhile to normalize for some of us. Congrats on getting off the medication after so long!

 

I'm interested to hear how your vestibular rehab goes so I hope you'll let us know. I've tried it a few times, but the last time I did it, I was in the middle of a Prozac withdrawal. Suffice to say, nothing could counteract the intense dizziness and "head shocks" of that.

 

On depression, fatigue and anxiety: I agree. These things are almost inevitable when one feels dizzy. Balance is essential for all sentient beings -- from frogs to cats to human beings. Anyone who has experienced these sensations would agree that it's a distressing symptom. To me, it's still unbelievable that this side effect/withdrawal effect of benzodiazepines is under-recognized. These medications are classified as "vestibular suppressants" in the medical literature. How much clearer can it be?!