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

hello dizzy buddies..

 

sorry for venting, but i cried myself to sleep last night... again.. this boaty sensation makes me so so mad and depressed i can’t do barely anything!!!!!! it doesn’t matter if i sit, walk or lay down. i can’t go on like this.. i can’t be a member of the social life, can’t even go on a non alcoholic drink with my girls because i feel like my brain is moving and i’m floating. i don’t know how much longer... 4 damn months on these pills and i feel like my early 20‘s are crap and will be..... aaaah :‘(

it’s definitely my worst symptom, i could live with the other stuff but this one.. sadly.. makes me suicidal sometimes....

 

 

Lapis,

 

There is another group for people who are 4 yrs off or more that you might be interested in. Several of them have used the Quell for pain relief. I thought all pain was caused by nerve pain. Since the Quell actually triggers the brains natural pain relieving ability I think it might help you.

 

Yes, I can do more things because I can wear the Quell all the time. So I can sit through a movie and a dinner without having to leave because I’m in pain. I have cut my pain meds in half and I’m slowly tapering off them.

 

Korbe

Hi Korbe,

Thanks for the info! Just to clarify, all pain -- all sensations, really -- are transmitted via nerves. We need nerves! They give us messages about what is happening in our bodies. In my case, there's a broken bone and it needs to heal, and the pain is telling me that I need to reduce my weight-bearing on it until it's properly healed. It's crucial.

 

If you put your hand on a hot burner, the nerves tell your brain that it's hot and you have to move your hand. It's a survival mechanism. The problem is that some pain continues when there's no clear reason for it, e.g. phantom limb pain. That's where some of the machines like TENS can be helpful.

 

In my case, I'm trying to tackle the causes of the pain, and that makes the most sense to me. Thanks again for telling me about Quell. It's not in my budget right now, but I'll keep it in mind, depending on how things go.

 

 

 

 

hello dizzy buddies..

 

sorry for venting, but i cried myself to sleep last night... again.. this boaty sensation makes me so so mad and depressed i can’t do barely anything!!!!!! it doesn’t matter if i sit, walk or lay down. i can’t go on like this.. i can’t be a member of the social life, can’t even go on a non alcoholic drink with my girls because i feel like my brain is moving and i’m floating. i don’t know how much longer... 4 damn months on these pills and i feel like my early 20‘s are crap and will be..... aaaah :‘(

it’s definitely my worst symptom, i could live with the other stuff but this one.. sadly.. makes me suicidal sometimes....

 

Hi intrepide,

No need to apologize for venting! What you're talking about is exactly what many of us are feeling too. It's really, really hard to deal with this symptom. I have the same feelings, but I'm a fair amount older than you. There's no good time to experience this, that's for sure. The things that I keep in mind are that others have healed from this, and we should too. Also, we can only focus on one day at a time. It's best not to look too far forward, because we really don't know what will happen tomorrow. Maybe tomorrow is the day that it will be better! We've heard of others for whom this symptom disappears quickly.

 

Just hang in there, intrepide. Cry if you need to (I do it all the time!), but also remember to do something nice for yourself -- whatever that is. Listen to some good music, or read a good book, or do whatever it is that can ground you and remind you that this will be over at some point.

 

I hope you get some breaks. I get a strange every-other-day pattern, so I get days when I'm less dizzy and days when I'm more dizzy. Those less-dizzy days allow me a bit of breathing time and a tiny window of hope that keeps me going on the harder days.

 

Take good care!

 

 

hello dizzy buddies..

 

sorry for venting, but i cried myself to sleep last night... again.. this boaty sensation makes me so so mad and depressed i can’t do barely anything!!!!!! it doesn’t matter if i sit, walk or lay down. i can’t go on like this.. i can’t be a member of the social life, can’t even go on a non alcoholic drink with my girls because i feel like my brain is moving and i’m floating. i don’t know how much longer... 4 damn months on these pills and i feel like my early 20‘s are crap and will be..... aaaah :‘(

it’s definitely my worst symptom, i could live with the other stuff but this one.. sadly.. makes me suicidal sometimes....

 

 

 

 

Hi intrepide!You have gotten some very good advice there from Lapis!I also am alot older than you and have been dizzy for a very long time,and it is also the hardest thing for me to go through,that is along with the anxiety!

 

Vent and cry whenever you need to.We do!Sometimes we feel so hopeless,and it helps to just get mad for awhile.

 

I have found that fighting this will make it much worse.I get days where I cry and feel like this is never going to leave too.I try and keep as good of an attitude about is as I can,because having a positive attitude and finding some humor in all this madness many times has saved the day for me.It isn't easy,but just know we are all healing every day,and like Lapis said,you could wake one day and it's much lighter,or gone!Your day will come,and so will ours!

 

Hang in there Intrepide!

By the way, I just re-read Baylissa Frederick's book called "With Hope In My Heart", and she was definitely VERY dizzy for quite awhile before she got better. I was amazed at her positive attitude, and I'm sure it helped her a lot. She had a feeling that she would get well, and, indeed, she did. I think she's around my age (mid-50s), and she took clonazepam for about 8 years, which is a fair amount of time.

 

I find it helpful to think of those who have gone before us and come out the other side -- healthy and happy. 

By the way, I just re-read Baylissa Frederick's book called "With Hope In My Heart", and she was definitely VERY dizzy for quite awhile before she got better. I was amazed at her positive attitude, and I'm sure it helped her a lot. She had a feeling that she would get well, and, indeed, she did. I think she's around my age (mid-50s), and she took clonazepam for about 8 years, which is a fair amount of time.

 

I find it helpful to think of those who have gone before us and come out the other side -- healthy and happy. 

 

 

 

Hi Lapis!I am glad you mentioned that you and  Baylissa are in your 50's.I am too,and it helps to hear that.

 

I was thinking about a bad day I had last week,where I decided to go to a place called Trader Joe's to use a gift certificate we got for Christmas.I have been putting it off,because I have been more anxious lately,and dizzier.I worry about falling,or having a panic attack in the store or heavy traffic.

 

 

Well,I decided to just go and get it over with,and it was bad.....I had a panic attack at the turn light on a busy street.I tried to calm down,and just keep going,and it was hard!In the store I was so anxious I wasn't enjoying looking around at all!I felt so lucky to have this nice gift certificate to get whatever I wanted,yet all I could do was feel so nervous and dizzy and want to bolt out the door.

 

I did manage to finish shopping and get home,but I was so bummed that I still can't handle alot of CNS stimulation.I think it was partially because I was going to a store I haven't been in,and I took a road that was really busy.It was just a bit much for me that day.I did feel pretty good just getting it done,but it wasn't as enjoyable as I had hoped.

 

Yet........

 

This morning I was very anxious and dizzy,but I needed groceries,so what the heck, I went anyways!Yet,I get to the store and once inside,I calmed down,shopped and looked at some stuff I wanted to check out,and the dizzy feeling lightened too.I was so happy,it was like totally opposite of my other nightmare shopping trip!

 

This stuff is so CRAZY!It can be so bad one minute,then change the next.Must be the healing going on.I still avoid crowds and shop early,but I am noticing a shift in the winds of healing more and more.It gives me hope!

 

One day we will all be able to shop and go places again without feeling like we are coming unglued and want to run and hide under the bed!

Wow! Thanks for the stories, 2200! You're such a courageous gal! You seem to be able to rally yourself and just get on with certain things. Obviously, it doesn't always turn out the way you want, but I really admire your strength. I'm so glad you had a better experience this morning, because those good times can override the bad -- or, at least, remind us that it's not bad every time.

 

I had a doctor's appointment at the hospital early last week -- follow-up X-ray on my broken foot and meeting with the doc. It was a rough ride there, and the X-ray was much more difficult than the last one I had. Now, I'm gun-shy for the next trip, but of course, I'll have to go anyway. We just have to find that courage deep inside to do things that need to be done and try to remember that things will get better.

 

I hope you got something nice at Trader Joe's! I don't do any in-store shopping these days -- just online, if I really need something. Otherwise, I have someone else do the food shopping. I do miss choosing my own food, but I guess it will be all the sweeter once I can do it again. I can choose my own romaine lettuce and kale! That will be a huge treat!

Wow! Thanks for the stories, 2200! You're such a courageous gal! You seem to be able to rally yourself and just get on with certain things. Obviously, it doesn't always turn out the way you want, but I really admire your strength. I'm so glad you had a better experience this morning, because those good times can override the bad -- or, at least, remind us that it's not bad every time.

 

I had a doctor's appointment at the hospital early last week -- follow-up X-ray on my broken foot and meeting with the doc. It was a rough ride there, and the X-ray was much more difficult than the last one I had. Now, I'm gun-shy for the next trip, but of course, I'll have to go anyway. We just have to find that courage deep inside to do things that need to be done and try to remember that things will get better.

 

I hope you got something nice at Trader Joe's! I don't do any in-store shopping these days -- just online, if I really need something. Otherwise, I have someone else do the food shopping. I do miss choosing my own food, but I guess it will be all the sweeter once I can do it again. I can choose my own romaine lettuce and kale! That will be a huge treat!

 

 

Lapis I hope your next Dr. appointment goes better!You are so much braver than me,I haven't been to the saw bones for over a year.I am too scared,and don't want to have to explain the benzo story again and get that look,and question the meds I am sure they will want me to take!

I know with a broken foot,you have to go.But,it sure isn't like a trip to the icecream store!Makes us nervous as little chahuahuas!

 

And yes,being able to pick our own groceries is so much nicer!Though some days when my husband offers to pick up the milk and bananas,I am soooo relieved!

Now milk and bananas are a different story! Your hubby can't go too wrong with those things! But with kale and romaine.....well, I really want to pick the nicest ones, the greenest ones, the biggest ones, the freshest ones. Someone else might be less interested or patient when it comes to being picky about fruits and vegetables.

 

The other thing I miss is getting to see what's out there at the different times of year. In the spring and summer, we get more Ontario-grown things, and I really want to support our Ontario farmers. Fall and winter can mean more imported things (Hello Farmers of California!).

 

Anyway, I like your description of the nervous little chihuahuas! Yes, that would be me! I was a shaking mess by the time I got to the hospital the other day, because it was a dizzy day and the driver wanted to take every little side road and go over every little bump and pothole by the time we arrived. The receptionist asked if I was okay! I must have been white as a sheet! I had to suck it up, but I almost broke into tears in the X-ray room. I need a CT scan next time, and that means lying on a skinny, hard table. I'm putting it out of my mind for now, but I wish I could have a pal there for support. Please let it be a less-dizzy day!

Anyway, I like your description of the nervous little chihuahuas! Yes, that would be me!

 

 

that is how i was in the beginning. my mother called it "a quivering mess".

Ah, we could have a club called "The Quivering Messes"! But perhaps, if we were all together, we wouldn't be quivering. We'd be laughing instead! At least, I hope so!

lapis and 2200..

thank you so so so much for your words, i can't describe how much they mean to me. sometimes it's just so hard to hold on, to not give up. i know i will not be better on meds because i never was. i was in tolerance right away, probably after 3 weeks.

 

i don't see a lot of success stories about the dizziness?!... maybe they have other more dominant symptoms that they don't mention them. but it is really my most annoying symptom. i am praying that this cruel sx will leave us soon.

 

thanks for listening and understanding.

 

love you guys, intrepide

Hi intrepide,

Try not to read too much into the Success Stories, because many of them leave out all kinds of details. Some people just say, "I had all the symptoms. You guys know what they are!" We've had people who jump on and off this thread, and we're never sure why someone doesn't jump in again. If they're well, they might not come back and tell us about it. Unfortunately, we can't get certain details and statistics that would help us put things into perspective.

 

One other thing to note: When I first found BB so many years ago, I was ONLY searching for the terms "boat" or "dizziness" or something like that. I had never heard of BB, but once I found one thread, I then found many others. I ended up creating a VERY hefty document, which had pages and pages of people's descriptions of their "floaty-boat" dizziness, or "fishbowl head" or a multitude of other descriptions for the same sensation. As far as I know, few or none of those people were still around when I finally joined BB many months later. I can't know for sure, of course, because I wasn't a member and didn't know their monikers, but I think most people's dizziness left them.  You have to remember that it's a symptom of withdrawal, and like the other symptoms, it, too, should go.

 

Patience. And time. And more patience. And, possibly, some more time. None of us knows how much time, but in the absence of any magical cures, it's the best option we have.

 

Take care and hang in there, intrepide! 

lapis and 2200..

thank you so so so much for your words, i can't describe how much they mean to me. sometimes it's just so hard to hold on, to not give up. i know i will not be better on meds because i never was. i was in tolerance right away, probably after 3 weeks.

 

i don't see a lot of success stories about the dizziness?!... maybe they have other more dominant symptoms that they don't mention them. but it is really my most annoying symptom. i am praying that this cruel sx will leave us soon.

 

thanks for listening and understanding.

 

love you guys, intrepide

 

 

intrepide,I will be one of the ones who comes on here and shouts the loudest when my dizziness is gone!I can't wait for it to go so I can come on here and encourage the other floaty boaters that there is life on solid ground again!

 

When I compare how I was at 1yr.off compared to 2,3 yrs.off and now almost 4yrs,I can see how much better things are.Not gone yet,but healing is definitely happening.I get some bad days,but now I bounce back quicker,and it's lighter most of the time.But I don't think any of us will be happy until it's totally gone!We just want to be normal again!

 

Take care intrepide!

 

 

 

 

Hi everyone,

 

I don’t know if you’ve all been aware, but SSRI/Antidepressant withdrawal hasn’t exactly got the attention on mainstream media as of yet. Many Benzo users are also unaware or ignorant to the fact that antidepressant withdrawal even exists! Much to my shock. Thankfully there has been a huge break through in the UK over an acknowledgement of SSRI withdrawal/SSRI discontinuation syndrome existing.

 

I’m a member of a number of groups of FB, and there has been much commotion yesterday about a few members being contacted by the media for interview about their withdrawal experience - this is on the back of a Scottish Parliament ruling that investigated drug dependence of Benzos, opiates and antidepressants and how much is needed in terms of support and education in the medical field to help patients Pre and post withdrawal.

 

Long story short - there’s a lady that has appeared on several new channels today and has listed her symptoms and provided a unified voice for us victims with such courage (as she’s still struggling badly with withdrawal from venlafaxine). She is a true heroine. I couldn’t help but cry when she mentioned her symptoms. It was my one true prominent symptom - ‘a rocking swaying sensation in my head/body like I’m on a boat’. I’ve long sought for an answer for my mysterious rocking and swaying + other symptoms, but that’s by far my worst and most disabling. It came 5 months after discontinuation of my SSRI after a rapid taper of 4 weeks. I searched high and low in antidepressant support groups... and I didn’t find many, but I found some with this symptom. I stumbled upon Benzobuddies due to google results for ‘withdrawal’ and ‘rocking boat’. I discovered a mammoth number of people with this symptom. This only confused me further.

 

I have came across a few SSRI withdrawal people and I keep in contact with them and I cling onto them due to this particular symptom we share in common. Well after today, I think I can finally put to rest that this IS withdrawal from Citalopram.

 

Here is one of several of the articles she has done:

http://metro.co.uk/2018/01/24/woman-shares-coming-off-antidepressant-ruined-life-7255570/?ito=cbshare

 

Read her list of symptoms. One including “feeling like my body was rocking as if on a boat”. What a day this has been for me. I’m very emotional today. It is true that Benzo and antidepressant withdrawal is nearly indentical in symptoms. I feel validated. This isn’t Lyme, this isn’t an inner ear disorder like Labrythitis, Vestibular Neuronitis etc. It’s withdrawal.

 

Here’s a television interview on BBC News she did earlier this morning when she talks more on the issue. Describing her head ‘rocking side to side’:  http://www.bbc.co.uk/programmes/b09p1j8z - skip to 2:09:00.

 

Great post, IrishMonkey!

 

And great to hear about all that news in the last couple of days. Indeed, Fiona French (known as "lookingforward" around here) from Aberdeen has posted some items about this in the News section, so we just learned about them. Those of us over the pond are pleased to see what's happening, and we're  hoping that our turn is coming next.

 

As far as your symptoms go, I'm not sure if you were around when I posted part of the book called "The Antidepressant Solution", which stated that dizziness was one of the major symptoms of coming off SSRIs. I quoted from the book where the author talked about the types of sensations, and indeed, they're just like benzo-withdrawal symptoms.

 

As you know, I took both benzos and SSRIs, so I've had a double-whammy of meds that can mess with the vestibular system. I haven't questioned the cause of my dizziness at all. I'm really glad your feelings have been validated, IrishMonkey, and that you're more certain about what's causing your disequilibrium.

 

I was thinking of you recently when I posted a research article about Mal de Debarquement Syndrome. If you weren't around at that time, it's a number of pages back. I can track it down if you'd like to read it. It was based on a survey rather than a clinical study, so that has to be taken into account. And, unfortunately, we don't know how many of the people who responded were taking benzos or SSRIs at the time. The paper stated that those meds were often helpful to people with MdDS. Um......sounds problematic to me!

 

Thanks again for posting, IrishMonkey. Check the Benzos in the News section if you want to see a few more articles. Perhaps you've already seen them, though, because you're on that side of the Atlantic!

 

Take care!

 

 

Hi all in the dizzy group! I thought I’d follow posts here since dizziness has been one of my worst symptoms for a long while now along with dp/dr. I’ve had tests done different times to rule out any other cause of my dizziness but nothing shows up thankfully. Though, the doctor still denies it’s from benzo withdrawal or Klonopin itself.

Hi ChampionRed,

Welcome aboard our floaty boat! It's a little rocky but we haven't tipped over yet!

 

It's good to hear that your testing has come back normal. At the very least, you can eliminate certain causes of the dizziness. But that testing obviously has limitations because it tends not to reflect what we're experiencing as a result of the medications.

 

I just wanted to clarify....Are you still taking the medication? If so, which one and how much? I'm not sure I read your signature properly. I, too, was on clonazepam (the generic form of Klonopin here in Canada), and it's known as a fairly strong benzo. It's medium-to-long acting as well, so its effects can be cumulative, depending on the dose.

 

I hope you're hanging in there alright. Take care, and stay upright!

Hi Lapis, thank you for the welcome!

 

Sorry my signature is a little confusing. I’ve been on both Xanax and Ativan at the same time but was switched to just Clonazepam (which I’ve been trying to taper down). I’m still taking a small dose (0.125mg), but I think it’s one of the worst since it lasts so long and seems to be pretty strong.

 

Hope one day soon we can get off the dizzy boat! It’s not a pleasant symptom to have at all. You take care too and I’ll try as well! 

Hi ChampionRed,

Thanks for the clarification! Did your doctor choose clonazepam rather than diazepam for a specific reason that you're aware of? Anyway, it IS a longer-acting benzo, like diazepam, so it's probably easier to withdraw from than the shorter-acting meds, but it can be a rough one. I think it's quite an individual thing, though. I couldn't get directly off clonazepam, but I was able to do it with diazepam. For some, it might be the opposite.

 

Anyway, as I'm sure you're aware, floaty-boat dizziness is so common around here, so I'm keeping my fingers crossed that yours won't be long-lived. When are you planning to take your next taper steps?

Hi everyone, I have dizziness back :/

 

did u find any relation between our symptoms, especially dizziness and brain fog, with stomach and intestinal issues ?

 

Cause when i massage my stomach it gets a little better. strange.

Hi yong,

So, you're dizziness went away completely and then it came back? How long was it gone for? Do you have any idea why it might have come back? For me, there's no real connection with brain fog or intestinal issues. I haven't actually had much brain fog, but I know that many have that.

 

Did you find anything out with the testing you had? What about Lyme?

 

 

still complicate for Lyme, thanks for asking... i'm in a bad shape this week, hope this will leave soon.

Thank you so much for this post! I’ve been experiencing this for a while, but wasn’t sure how to put it into words. It’s not a constant state. Sometimes I feel like I’m in that scene from the Matrix. It’s weird because I snowboard a lot and I don’t experience this while snowboarding. Even though it requires more balancing then just walking around.