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

[[La...]]

Hey fellow floaty boaters. It's been a while since I've been on the site, but I came back to see if anyone had posted on ketamine assisted therapy for PTSD and thought I'd pop in and give a quick update. I'm not sure I'd ever feel confident to make a success story given my own journey with all of its setbacks but I will say that over the last few months my dizziness has really cleared. It was one of my most disabling symptoms (along with akathisia/paresthesia) since 2016 and something that I dealt with every day. About four or five months ago, things started to shift and it has improved a lot. I still have some dizziness but its very minor and most of the time I'm not aware of it. Might come back again like it did before, so I'm not getting overly excited, but any improvement is welcome. I'm still susceptible to bouts of head pressure and paresthesia, but it's mostly now during periods of higher stress. Not sure if that will change but most days feel workable as long as I don't over do it. Wishing you all peace, healing and wide open windows.

 

jj

 

Thanks so much for coming back and posting this update, jjrosk. I'm really happy to hear that your dizziness has cleared up quite a bit and that you're able to function so well. It's helps the rest of us to know that even after a long period of time, this dizziness can still go away. Fantastic! Thanks again. And best wishes to you!

[[Ri...]]

My wife has been off clonazepam since September 1st 2020. Over time she has developed vertigo , it was tolerable until yesterday when she tried Epley maneuver found on YouTube.  The result is all he'll broke loose, vertigo 10x worse. I am hoping this will correct itself in short order. Can anyone offer some suggestions or support. Would a Vestibular rehab specialist  help.

Thanks

Richard

[[La...]]

My wife has been off clonazepam since September 1st 2020. Over time she has developed vertigo , it was tolerable until yesterday when she tried Epley maneuver found on YouTube.  The result is all he'll broke loose, vertigo 10x worse. I am hoping this will correct itself in short order. Can anyone offer some suggestions or support. Would a Vestibular rehab specialist  help.

Thanks

Richard

 

Hi Richard,

It's definitely worthwhile to get things assessed by a medical professional who has expertise in this area. The Epley Maneuver is useful for a type of dizziness called Benign Paroxysmal Positional Vertigo, but it doesn't address certain other kinds of dizziness. "Vertigo" usually refers to a rotational (spinning) kind of dizziness, but many BBs describe a more boat-like floaty sensation. Personally, I haven't had any spinning at all, but I've had a lot of the floaty-boaty disequilibrium.

 

Anyway, to get back to your question, I really do think that consulting an experienced health care professional to get a proper assessment of what's going on is prudent. I can add, though, that there's no quick fix for many of us, and it just takes time for the  brain to normalize after using benzos for awhile. The vestibular system is finely tuned and highly sensitive, and many medications can affect it adversely.

[[lq...]]

I was extremely dizzy when I was on xanax after taking each pill, I always lost equilibrium when walking and it was like I was extremely drunk. I hit on everything on my house and almost fell on the ground sometimes. It passed after a bit but I got it again after taking another dose. Everytime.

 

It stopped when I got switched to diazepam taper. But now on lower doses I get dizzy again. To the point that some weeks ago I hit my forehead with the frame of a door on the edgiest part of it and it made me a wound with blood, and now I have a scar

[[La...]]

I was extremely dizzy when I was on xanax after taking each pill, I always lost equilibrium when walking and it was like I was extremely drunk. I hit on everything on my house and almost fell on the ground sometimes. It passed after a bit but I got it again after taking another dose. Everytime.

 

It stopped when I got switched to diazepam taper. But now on lower doses I get dizzy again. To the point that some weeks ago I hit my forehead with the frame of a door on the edgiest part of it and it made me a wound with blood, and now I have a scar

 

Yeah, that's not good! Have you considered using a cane or walker to help you stabilize a bit?

[[La...]]

Hello Lapis and everyone. Thanks for coming back Jj. It's great to hear this debilitating symptoms are finally lifting for you. It gives everyone else hope that this will be the case for each of us. Boatiness and pulling sensation has been my worst symptoms too. In the past 2 months I've made some improvements as well. When having waves I notice increase ear ringing, increase boatiness, head pressure and pulling as if a magnet is under me. In windows all of these disappear or are so mild that I barely notice them. Before this they were constantly noticeable varying from moderate to intense. So there's hope everyone! Don't give up. For the first time 2 weeks ago I rode in my car with no boatiness before during or afterwards. I only rode around my block a couple of times but it was great to allow me to see that I'm healing. Wow I was so happy! I'm planning to do this every week if I can. I agree with Lapis that it's better to be safe than sorry by using a cane or walker. Please be saf. Hugs to you all. Happy Spring!

[[La...]]

Hello Lapis and everyone. Thanks for coming back Jj. It's great to hear this debilitating symptoms are finally lifting for you. It gives everyone else hope that this will be the case for each of us. Boatiness and pulling sensation has been my worst symptoms too. In the past 2 months I've made some improvements as well. When having waves I notice increase ear ringing, increase boatiness, head pressure and pulling as if a magnet is under me. In windows all of these disappear or are so mild that I barely notice them. Before this they were constantly noticeable varying from moderate to intense. So there's hope everyone! Don't give up. For the first time 2 weeks ago I rode in my car with no boatiness before during or afterwards. I only rode around my block a couple of times but it was great to allow me to see that I'm healing. Wow I was so happy! I'm planning to do this every week if I can. I agree with Lapis that it's better to be safe than sorry by using a cane or walker. Please be saf. Hugs to you all. Happy Spring!

 

Enjoy those windows and car rides, LadyDen! Great to hear that you're having some better days. 

[[La...]]

Thx Lapis. Some of the things I'm doing now I dreamed of for a long time. They feel so awesome! I hope you're doing things you enjoy too. Lots of love to you dear. 

[[La...]]

Thx Lapis. Some of the things I'm doing now I dreamed of for a long time. They feel so awesome! I hope you're doing things you enjoy too. Lots of love to you dear. 

 

Fantastic news! Keep up the good work! Sending love and hugs back to you too.

[[Lo...]]

Can anyone at all relate to these symptoms. I’m at point where I’m bed bound and I’m so confused I can’t go on like this anymore. I’m so so scared.

 

Does any one experience severe disorientation dizziness when in a car.?

Im only 36 I don’t know what’s happening to me but roads look like they are positioned wrong like the angle of the road is wrong and it makes me so disoriented to the point that my brain blacks out in a way.

I’m so scared as no One seems to have these symptoms I don’t know what’s wrong with me.

I even feel funny In my house when I change direction like I can’t comprehend different directions.

I struggle to leave the house because of this I also have severe panic and anxiety disorder.

I’m really hoping there’s people who understand this

🙏

[[La...]]

Can anyone at all relate to these symptoms. I’m at point where I’m bed bound and I’m so confused I can’t go on like this anymore. I’m so so scared.

 

Does any one experience severe disorientation dizziness when in a car.?

Im only 36 I don’t know what’s happening to me but roads look like they are positioned wrong like the angle of the road is wrong and it makes me so disoriented to the point that my brain blacks out in a way.

I’m so scared as no One seems to have these symptoms I don’t know what’s wrong with me.

I even feel funny In my house when I change direction like I can’t comprehend different directions.

I struggle to leave the house because of this I also have severe panic and anxiety disorder.

I’m really hoping there’s people who understand this

🙏

 

Hi Louise1,

Are you still in the midst of tapering or taking any medications? Are these symptoms new? Have you seen your family doctor or any other doctors to have the things you've described checked out?

 

In my case, it's a long time since I had any visual issues related to the medications I was taking or tapering, but I sought medical advice at the time. In my case, everything was deemed to be okay, and the visual things I was experiencing settled down after awhile.

 

 

[[Co...]]

Hi everyone. 

It's been a while since I have been on this site since my husband seemed to be doing well.  He was on Ativan (lorazepam) for 10 years until an MD finally told him that this wasn't intended for longterm use!    He got no help from any MD on tapering and so he did a long slow taper himself based on what he was reading on the web taking his last dose about a year ago.  Although he was still having symptoms, he was doing slightly better, still experiencing some unsteadiness, ocular migraines and tinnitus but felt it was manageable.  However, recently he has had some severe head pressure, he feels like it's a bad head cold/stuffiness that never goes away.  Given that he doesn't have a head cold, sinus infection, flu, I wasn't sure if this was related to something else or whether it was related to benzo withdrawal.  So I thought I would check in with this community to see if anyone else has ever experienced this head pressure?  Any feedback would be welcomed and very much appreciated.  Thank you to you all for your support and I hope you are all staying safe and well.

[[La...]]

Hello Concerned Wife.

Yes I've experienced all of the symptoms your husband is having. Head pressure, sinus pressure pain sinus headache with stuffy nose ( without it being allergies or anything else), dizziness, boatiness ( like on a sailboat or fun house floor), unbalanced when trying to walk, tinnitus at varying degrees, muscle twitches, muscle cramps, constipation and diarrhea alternating, fatigue, trouble swallowing, cough for no reason, low appetite then very hungry, dehydration, shakes but not cold in the house, joint pain, trouble sleeping, brain zaps when drifting to sleep, teeth feeling numb/weird, sensitivity to light and sounds, vibrations, UTI symptoms, groin pain/numbness on one side, cold hands and feet, hair loss, intrusive thoughts and songs, feeling down, feeling flu like, nausea, benzo belly( tight feeling), feeling like drops of water are on my arm or leg, heavy legs as if I've been sitting on them, tingly mild pain in legs and feet, winded sensation, heart palpitations/ tachycardia/arrhythmia, elevated blood pressure off and on, feeling faint or as if I'm going to have a seizure, itching hands and feet at night, dental changes to my gums and teeth, sensitivity to preservatives in food ( especially msg and nitrate/nitrite, sensitivity to caffeine, weird numbing sensation inside my mouth as if I've been to a dentist, adrenal surges, morning dread (feeling awful), inability to tolerate standing or sitting up, can't drive or ride in a car and irritated off and on.

All of them over time are gone or have lower greatly in intensity and frequency. Next month I will be a year that I've been off. It has been a tedious, slow, trying, uncomfortable, frustrating at times but valuable personal insight JOURNEY! You've probably read by now on here that time will heal. That is absolutely true!!!! Matter of fact, many of the things people try to take to help ends up making them worse. What did help me was meditation ( especially in my waves), sleep hygiene ( bedtime routine), drinking plenty of water in the morning upon waking, pampering myself ( massaging my scalp or arms, congratulating myself for doing things, calming shower or bath ( watch out for bath salts!, light exercise including chair yoga if dizzy, distracting myself with funny movies, old tv series, game shows, youtube videos of positive things, researching things I've always wondered about, doing art, calming music, reading the bible or attending bible study online, playing games online, coloring, cooking shows, antique car shows, going to the museum or zoos on YouTube and so many other things. Distracting yourself passes the day more easily instead of focusing on the symptoms and keeps you engaged with positive things you enjoy. And you can even learn something new that you've always wanted to learn to do while recovering. I was completely bedridden for about 2 years. Now I'm able to sit up to enjoy a movie with my family, cook small meals, take short walks, care for my own personal needs and recently I can ride in a car for short distances. Only time did this and staying positive.

I hope this can help you help your husband to recover more comfortably. I wish him well and hopefully his healing will be swift. You're a good wife to chime in on his behalf. I applaud you. There's some of us on here that our spouse deserts us or just don't care to be supportive. Sadly during this time that we need it the most.

You mentioned his recent uptick in symptoms. I'm wondering if he overdid it or ingested something that triggered this response. Also I'd like to mention that in recovering, for awhile things might be better then suddenly make a shift even without a cause. He might be just experiencing this shift. It's the brain going back to fine tune things or it's gotten to a part that needs repair. Have you read Parker's thread on here about " what's happening in the brain". It's a must read! It explains a lot and eased my worries. Please read it. Best wishes.

[[Be...]]

Many people complain of head pressure after getting off benzo's.

[[En...]]

Can anyone at all relate to these symptoms. I’m at point where I’m bed bound and I’m so confused I can’t go on like this anymore. I’m so so scared.

 

Does any one experience severe disorientation dizziness when in a car.?

Im only 36 I don’t know what’s happening to me but roads look like they are positioned wrong like the angle of the road is wrong and it makes me so disoriented to the point that my brain blacks out in a way.

I’m so scared as no One seems to have these symptoms I don’t know what’s wrong with me.

I even feel funny In my house when I change direction like I can’t comprehend different directions.

I struggle to leave the house because of this I also have severe panic and anxiety disorder.

I’m really hoping there’s people who understand this

🙏

 

I have the same thing I can’t even get on a bus or the passenger seat of the car. How is it going for you?

[[Be...]]

Hi everyone,

 

I’m at just over 16 months since I cold turkeyed. In the last couple of days the boaty/unsteady feeling like I’m moving but I’m staying still has come back with a bang.  I’ve also got nausea, lack of appetite & weight loss & GI issues again.  Has anyone else been hit by this at over 16 months out? I had my first all say window last week - I woke up feeling like myself & went to bed feeling like myself.  It was awesome.  I find the non linear nature of this all really hard. Thanks for your help.

[[En...]]

Hi guys is there something I could do to feel less sick with motion sickness? That’s one my biggest symptom

[[La...]]

Can anyone at all relate to these symptoms. I’m at point where I’m bed bound and I’m so confused I can’t go on like this anymore. I’m so so scared.

 

Does any one experience severe disorientation dizziness when in a car.?

Im only 36 I don’t know what’s happening to me but roads look like they are positioned wrong like the angle of the road is wrong and it makes me so disoriented to the point that my brain blacks out in a way.

I’m so scared as no One seems to have these symptoms I don’t know what’s wrong with me.

I even feel funny In my house when I change direction like I can’t comprehend different directions.

I struggle to leave the house because of this I also have severe panic and anxiety disorder.

I’m really hoping there’s people who understand this

🙏

 

I have the same thing I can’t even get on a bus or the passenger seat of the car. How is it going for you?

I have also been suffering with these same things: environment distortions ( floors tilted, roads shifted,etc), head symptoms, boatiness, dizziness, unbalanced, scared of falling or going anywhere, floating, magnet pulling sensation, intolerance of standing or sitting up, not being able to look up or down using my head, ear ringing, rapid cycling lately of these. This has made me completely bedridden for the past two years. About 2-3 months ago I started making progress having longer windows of my symptoms nearly gone or gone. This allowed me to start sitting up, taking short walks outside, small chores, take care of myself without help, ride in the car for short distances and two weeks ago I drove a very short distance for the first time in over a year.

But as of last week I got slammed backwards with rapid waves of the above symptoms ( except feeling scared of being outside). It feels like back in acute but less intense and less duration of each wave. But definitely not much of a window in between them. I'm very disappointed because I made such progress. I started feeling more hopeful that my diabolical nightmare of this was over. I even started planning small things to start my venture back out into the normal world. But now it will have to wait. Apparently my brain isn't done fixing things. I'm completely OK with that. I'm going to NEED to be in top normal shape to enjoy life again. So I'm giving my brain the " fix me good" go ahead and positivity it needs. It simply came across an area that it detected needing more repair.

I'm not sure if my current life devastations/stress kick started my supposed rapid cycling or if I've been over doing it because of my moving to a new place in 2 days. The past 3-4 days I've been back in bed most of the day. It's not what I want after being in its prison for so long but I'm looking at it as it's what my body needs for now. Since I've been resting things have settled a bit. In 2 days I've got to be able to do a 15 minute car ride to my new home. So I'm staying in bed until then. IT IS WHAT IT IS. But it's definitely TEMPORARY! 

My advice from my experience is to go with the flow. Don't fight the natural way our brains heal. It's not linear. A roller coaster of normal/almost normal then back to tense. Just keep in mind that coaster has an ending that is straight calmer and smooth. Pamper yourself even through the waves. If you're bedridden do fun things to distract. In this bed 24/7 all those months, I've pretended to take trips I've wanted to go on. I did this by using the Internet. One week I was in Paris. I ate French style, wore French like sleep wear, visited sites/museums there on YouTube, learned some French words, researched its history etc. I made my bed prison fun! And you can too. The next week I was in Japan and so on. On YouTube they have zoos, aquariums, museums, live feeds of amusement parks, etc Even live zoo cams! Try it and you might be surprised how great a distraction it is. Also it helps to pass time. So yes all the boaty dizzy bedridden BBs I feel your turmoil. We will get through this. Don't let the benzo lies take over your mind that you'll never be better. YOU will!!!! I'm a witness even though I'm not healed. I came from being in a baby like state to riding in the car visiting my son his wife and my new grandbaby. I was able to visit them for almost 2 hours then rode back home. This will happen for you too. 

[[li...]]

Hello all,

I’m 3 months shy of 9 years off xanax…sadly I still have the floaty boaty  unsteady under my feet feeling.

It has been coming and going for years ….just when I think it’s done…back it comes…

But I haven’t given up hope just yet, I’m just very tired of it…why won’t my brain just heal already ??

But that’s just me…but from what I’ve read here on the site…theses feelings are very common coming off of

certain meds…

It just gets very discouraging after a while…never mind it’s just awful when you are going through it…I’ve had all the weird sensations about 5 days now ….then one day I wake up and it’s gone ! Yay ! Then it may stay gone for 2-3 months…then back again the feelings come…

I feel fortunate that I’ve gotten relief through the years .

 

Hopefully all of you who have the same dizzy heads…will get some relief and feel better soon.

Stay positive…and stay well.

Much love and healing to all.

 

little m

[[En...]]

Did someone try Dramamine? My doctor prescribed it to me and I want to give it a try

[[La...]]

Did someone try Dramamine? My doctor prescribed it to me and I want to give it a try

 

Hi EnzoIt,

Did your doctor suggest that you take it every day, or just once in awhile? It's meant for motion sickness, and it may or may not give you some relief, but if you look it up, it's not really meant for long-term use.

 

I'll put in a couple of links here, in case you want to read a bit of info. One is about that medication (dimenhydrinate), and the other is about medications and dizziness:

 

https://www.canada.ca/en/health-canada/services/drugs-health-products/drug-products/applications-submissions/guidance-documents/nonprescription-drugs-labelling-standards/dimenhydrinate-labelling-standards-non-prescription-drugs.html 

 

 

https://vestibular.org/article/diagnosis-treatment/treatments/medication/ 

[[En...]]

Hi lapis she told me to take it when I feel very nauseous, I just had my vestibular system checked and fortunately it’s ok

[[La...]]

Hello all,

I’m 3 months shy of 9 years off xanax…sadly I still have the floaty boaty  unsteady under my feet feeling.

It has been coming and going for years ….just when I think it’s done…back it comes…

But I haven’t given up hope just yet, I’m just very tired of it…why won’t my brain just heal already ??

But that’s just me…but from what I’ve read here on the site…theses feelings are very common coming off of

certain meds…

It just gets very discouraging after a while…never mind it’s just awful when you are going through it…I’ve had all the weird sensations about 5 days now ….then one day I wake up and it’s gone ! Yay ! Then it may stay gone for 2-3 months…then back again the feelings come…

I feel fortunate that I’ve gotten relief through the years .

 

Hopefully all of you who have the same dizzy heads…will get some relief and feel better soon.

Stay positive…and stay well.

Much love and healing to all.

 

little m

How awesome for you to check in and give such encouraging words. Thanks so much Little M. This isn't easy to live with. Very debilitating! You haven't given up. You keep fighting. That's a beautiful testimony of your endurance. I'm glad that you're getting periods of normalcy. That's a good sign. Soon you'll get one of those wake up normals and stay that way. At least this is my prayer for you. Keep the faith. The way I see it, if you get one day of normal then certainly the brain can give you two or three and even more to the point that you're free. I know you've endured so much in your 9 years. Wow you are a strong BB warrior!

[[La...]]

Hi lapis she told me to take it when I feel very nauseous, I just had my vestibular system checked and fortunately it’s ok

 

Well, it's good news that your vestibular system checks out fine. That's the case for most of us who have had such testing done. The available testing doesn't seem to reflect certain kinds of dizziness at this point, but it's good to know that certain other things can be ruled out in your case.

 

I haven't had any nausea myself, so I didn't consider trying that medication. Are you nauseous a lot?

[[En...]]

No only if I stay outside a lot but I think it’s mainly because Xanax is affecting my blood pressure (it’s always low) tomorrow I’m going to take a blood test