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

[[He...]]

I’m so upset. I thought the dizziness was behind me, these last two tapers have brought all my balance issues again. I just feel woozy and it can last for hours at a time I hate it 😔

[[La...]]

It’s going to be ok. It will go away eventually. Mine is starting to get better. Hope that gives you hope.

[[AL...]]

HELLO,

Has anyone found that the Vertigo and motion sickness got worse when you encountered a stressful situation or circumstance?

 

THANKS

[[La...]]

Yezzzzzzz! They go hand in hand. Stress causes upticks. It’s a known fact in this community. It’s best to avoid it as best as you can.

Happy healing!

[[La...]]

HELLO,

Has anyone found that the Vertigo and motion sickness got worse when you encountered a stressful situation or circumstance?

 

THANKS

 

Hi ALWAYSHOPE,

I don't have vertigo (spinning) or motion sickness, since my dizziness is the floaty-boaty disequilibrium type, but I would say that stress makes most health care issues worse. It's just the nature of the beast. Stress is part of life, of course, so we all have to face it regularly, but adrenaline and cortisol (the stress hormones) aren't meant to be constantly flowing through our bodies. They play significant and useful roles when needed, but too much stress -- especially if it's ongoing -- can be really problematic.

[[pi...]]

Hi Lapis, Thanks for this thread, im 4-5 years out and am usually okay at rest these days but ive had this bad dizziness feeling for a week or so now and its not letting up. Since its been so long since I was on here, Im just trying to remember my coping mechanism, relax, reassurance, eating right etc to calm it down, it comes and goes in intensity but its always there and I feel like im flaoting away for a second over and over and over again and i just feel unwell. Only thing that helps it is lying down!. do you have any pointers or tips? like im having trouble distracting myself with video games or movies, I just feel nauseated and tired like sea sickness all the time.

[[La...]]

Hi Lapis, Thanks for this thread, im 4-5 years out and am usually okay at rest these days but ive had this bad dizziness feeling for a week or so now and its not letting up. Since its been so long since I was on here, Im just trying to remember my coping mechanism, relax, reassurance, eating right etc to calm it down, it comes and goes in intensity but its always there and I feel like im flaoting away for a second over and over and over again and i just feel unwell. Only thing that helps it is lying down!. do you have any pointers or tips? like im having trouble distracting myself with video games or movies, I just feel nauseated and tired like sea sickness all the time.

 

Hi Pinky,

Is this dizziness new? Is it the same as before, or has it changed? The reason I ask is because dizziness can be caused by so many things, and if you're having a new bout of dizziness, then it might not necessarily be from the benzos.

 

However, if you think it's still a benzo-related thing, then I guess it's important to find a bit more patience, if you can...and whatever distractions you can. I don't have any experience with nausea, since that's never been something I've had to deal with. Ginger is supposed to be good for that, so perhaps you could try ginger tea or something.

 

I'm struggling quite a bit myself these days, so I might not be the best person to give advice at this point. It's been a long slog for me, and I recently injured myself, so I'm in a pretty bad place now. I really hope this bout of bad dizziness passes soon for you, Pinky. Take care!

[[La...]]

Hi Dizzy Buddies,

I just came across a study that looks at dizziness in people who have had COVID, and I wanted to share it here. By the way, I really hope everyone is staying safe with regards to COVID precautions. I will just put the link to the abstract here, rather than copying and pasting the text. In that way, you can easily ignore this info, if you find it triggering. For anyone who wants to read a bit more about it, the full study is available by clicking on the icon in the upper right-hand corner of the abstract.

 

"Prevalence of symptoms in 1512 COVID-19 patients: have dizziness and vertigo been underestimated thus far?"

 

https://pubmed.ncbi.nlm.nih.gov/35098491/

[[La...]]

Hi All,

One more study to share today....It looks at neurotransmitters in a part of the vestibular system called the saccule. I've long had questions about this topic, and of course, how psychiatric medications affect the vestibular system. It's only an abstract (summary), so I can't read the full study, but it's worth checking out if you're interested in this sort of thing:

 

"Neurotransmitter and neurotransmitter receptor expression in the saccule of the human vestibular system"

 

https://pubmed.ncbi.nlm.nih.gov/35104536/

 

Abstract

 

The saccule is one of the vestibular sensory organs of the inner ear. It detects head movements and provides information to maintain balance and orient in space. Despite its critical role, very little is known about its neurotransmission and regulation. Multiple disease entities and medications affect balance, which is why information on neurotransmission in the vestibular end organs including the saccule could have important pharmacological implications. To the best of our knowledge, this is the first paper to describe immunohistochemical expression of a large panel of neurotransmitters and receptors in the human saccule. Saccular tissue was sampled freshly during surgery. Based partly on previous findings in non-humans and partly on potential biological relevance, the neurotransmitters cholecystokinin, dopamine, GABA, glutamate, histamine and serotonin as well as receptors for these were selected for the tested panel. The neuroepithelium expressed glutamate receptor 1 (GluR1), metabotropic glutamate receptor (mGluR), GABA A receptor α (GABAARα), GABA B receptor 2 and cholecystokinin receptor B (CCKBR), whereas l-glutamate, GluR1, CCKBR, GABAARα, dopamine and serotonin receptor 1D were expressed in the subepithelial stroma. The non-sensory epithelium expressed GluR1, mGluR, histamine receptor 3, CCKAR and dopamine transporter. These findings provide a basis for pharmacological research and potential drug development.

 

 

 

[[En...]]

because of a medication setback (indomethacin) it’s been 6 days in a row I have very bad vertigo and dizziness, even when I close my eyes i feel like in a car and I feel like my head keeps moving, I get so nauseous that I drink ginger tea and eat ginger candies but it’s not enough. I called a vestibular doctor and he told me to take Dramamine and betahistine to get better and go see him in 2 weeks. Can I take them for 2 weeks? If I don’t I can’t even eat.. Can you please tell me this setback will pass? I’m scared I’ll be like this for months and months.. another thing, a big symptom I had before this setback was inability to focus my eyes, I read it could also be a sign of dizziness

[[dr...]]

I've had a lot of dizziness which I attribute to Abilify. When I stop it the dizziness stops, and I never had it before. I wonder if other abilify users are on here. I was on it for 6 months and I've tried to drop it 3 times, but it turned into a taper. It's easy to say now but I hate it worse than benzos.

[[La...]]

because of a medication setback (indomethacin) it’s been 6 days in a row I have very bad vertigo and dizziness, even when I close my eyes i feel like in a car and I feel like my head keeps moving, I get so nauseous that I drink ginger tea and eat ginger candies but it’s not enough. I called a vestibular doctor and he told me to take Dramamine and betahistine to get better and go see him in 2 weeks. Can I take them for 2 weeks? If I don’t I can’t even eat.. Can you please tell me this setback will pass? I’m scared I’ll be like this for months and months.. another thing, a big symptom I had before this setback was inability to focus my eyes, I read it could also be a sign of dizziness

 

Hi EnzoIt,

I don't think anyone here can tell someone else what to do, so please listen to your own head and heart on this. Perhaps you can speak with a pharmacist for more information about the medications, if you're unsure about their safety or side effect profile. Personally, I don't think there would be any harm from taking the medications you mentioned to see if they help. Seeking out medical help from a specialist is a good idea, since dizziness can be caused by so many different things and s/he may be able to help you with this latest bout of dizziness.

[[En...]]

because of a medication setback (indomethacin) it’s been 6 days in a row I have very bad vertigo and dizziness, even when I close my eyes i feel like in a car and I feel like my head keeps moving, I get so nauseous that I drink ginger tea and eat ginger candies but it’s not enough. I called a vestibular doctor and he told me to take Dramamine and betahistine to get better and go see him in 2 weeks. Can I take them for 2 weeks? If I don’t I can’t even eat.. Can you please tell me this setback will pass? I’m scared I’ll be like this for months and months.. another thing, a big symptom I had before this setback was inability to focus my eyes, I read it could also be a sign of dizziness

 

Hi EnzoIt,

I don't think anyone here can tell someone else what to do, so please listen to your own head and heart on this. Perhaps you can speak with a pharmacist for more information about the medications, if you're unsure about their safety or side effect profile. Personally, I don't think there would be any harm from taking the medications you mentioned to see if they help. Seeking out medical help from a specialist is a good idea, since dizziness can be caused by so many different things and s/he may be able to help you with this latest bout of dizziness.

 

Thank you Lapis, i took Dramamine so I was able to eat at least, then only side effects is it makes me sleepy, but I’m more scared about being a vestibular suppressant, I don’t want to not give the chance to my brain to compensate the vertigo and the dizziness.. I’ll see him in 10 days hoping to not be too sick to cancel.. have you ever read about dizziness causing also visual symptoms like inability to focus the eyes? Because even before this setback I couldn’t use a computer or read a book because I’d get too dizzy

[[La...]]

because of a medication setback (indomethacin) it’s been 6 days in a row I have very bad vertigo and dizziness, even when I close my eyes i feel like in a car and I feel like my head keeps moving, I get so nauseous that I drink ginger tea and eat ginger candies but it’s not enough. I called a vestibular doctor and he told me to take Dramamine and betahistine to get better and go see him in 2 weeks. Can I take them for 2 weeks? If I don’t I can’t even eat.. Can you please tell me this setback will pass? I’m scared I’ll be like this for months and months.. another thing, a big symptom I had before this setback was inability to focus my eyes, I read it could also be a sign of dizziness

 

Hi EnzoIt,

I don't think anyone here can tell someone else what to do, so please listen to your own head and heart on this. Perhaps you can speak with a pharmacist for more information about the medications, if you're unsure about their safety or side effect profile. Personally, I don't think there would be any harm from taking the medications you mentioned to see if they help. Seeking out medical help from a specialist is a good idea, since dizziness can be caused by so many different things and s/he may be able to help you with this latest bout of dizziness.

 

Thank you Lapis, i took Dramamine so I was able to eat at least, then only side effects is it makes me sleepy, but I’m more scared about being a vestibular suppressant, I don’t want to not give the chance to my brain to compensate the vertigo and the dizziness.. I’ll see him in 10 days hoping to not be too sick to cancel.. have you ever read about dizziness causing also visual symptoms like inability to focus the eyes? Because even before this setback I couldn’t use a computer or read a book because I’d get too dizzy

 

Hi EnzoIt,

If you're just taking Dramamine for a short period of time, then it would be unlikely to cause a major issue. Taking it every day isn't likely a good idea, but it might give you a bit of a break for awhile. It's definitely worth asking the doctor about that one.

 

And yes, vision is directly related to balance. It's one of the three major aspects of balance -- vision, vestibular system and proprioception. All three of those things need to be giving your brain the same messages at the same time, or you can feel dizzy. You can definitely ask the doctor about that as well. Sometimes exercises are given to a dizzy person that involve moving the eyes and head in certain ways, but those exercises need to be individually prescribed by a specialist after s/he does an exam.

 

Anyway, it really does sound like you should be properly assessed by a doctor in order to see what's going on and what might help. I hope you'll follow through on that. At the very least, s/he can rule out certain things. Diagnosing causes of dizziness can be quite challenging.

[[La...]]

Hi Dizzy Buddies,

I just came across a study that looks at dizziness in people who have had COVID, and I wanted to share it here. By the way, I really hope everyone is staying safe with regards to COVID precautions. I will just put the link to the abstract here, rather than copying and pasting the text. In that way, you can easily ignore this info, if you find it triggering. For anyone who wants to read a bit more about it, the full study is available by clicking on the icon in the upper right-hand corner of the abstract.

 

"Prevalence of symptoms in 1512 COVID-19 patients: have dizziness and vertigo been underestimated thus far?"

 

https://pubmed.ncbi.nlm.nih.gov/35098491/

Thank you Lapis. I hope you’re feeling better dear! Big hugs 🤗

[[Mi...]]

This boaty/disequilibrium/balance issue symptom is back for me ... again.

 

It has come & gone over the last three years of this journey for me. It has left for 6 months. One time even 9 months.

 

The latest is that after having a pretty cruddy wave last fall where the balance/dizziness issue was the main symptom, I had over 6 months where it mostly abated. I only had it slightly in the evening once in a while. I was driving, going to stores, visiting with neighbors outdoors. I was even able to tackle walking over a tall walking bridge here in town that I would of never been able to do even a year ago. That was quite a celebratory milestone . I truly thought I was on my way to being healed. But, now I am in a wave again.

 

It started out mild for the first 3 or 4 weeks of it. I was still able to drive some and I had days where I felt completely normal all day. I actually did not have the dizziness the first few weeks of it. I was saying to myself: "I am in a wave, but I am SO glad that I don't have that dizziness crap." The wave was actually more just feeling chemical doom at first. Well, then that all changed and now the dizziness/ balance issues are back.

 

I thought I would just get by because having a wave at 3 years out can't be as bad as the previous ones right??? And it is not as bad as previous waves. Less intense, symptoms less frequent, but I figured it would be over with sooner. I think you lose patience as time moves on. I actually did not rest much the first 3 weeks because I really forgot how to behave in a wave.

 

I feel pretty good for the first part of the day, almost healed feeling. Then once the late afternoon/evening comes, that's when I get symptoms. Guess my CNS gets tired as the day goes on??  I have not been able to drive nor even be a passenger in a car for about a week now, and last night I was back to having some issues with it in the shower. I hate that. It can bring on some brief derealizaton too. Haven't had that symptom in well over two years.

 

It's hard to see other buddies on this forum who drive and work while they go through this. I've asked Baylissa Frederick this question & she says it's because they have more mental symptoms and less physical. I hate this symptom.  I feel disabled when I have it.

 

Also, I am finding out that coming onto this forum when you have a challenge after 3 years is hard too. People don't want to read about someone having struggles this far out & they avoid you.

 

The good news is that during my two years on this forum, I have seen people who really had a hard time with the vestibular symptoms heal and move on. Megan Z and Doveluv are two of them.

 

How do you cope with watching people work, drive,  those who are in withdrawal,  while we struggle with these things? It's like watching the world move by while I sit in the chair trying to rest and heal my system.

 

I know stress makes it worse,  and by golly what could be more stressful than healing from something so hard on our nervous system while doing it during a frickin pandemic??  I guess because of this we need even more self compassion and self care.

 

While the world opens up and people run around without a care in the world, I have to be okay with "sitting on the sidelines". Some days I'm okay with it telling myself I am glad I can step aside from the "rat race" while I heal (silver lining), and some days I am not. 

 

As of late I have been following David Powers benzo coach because I was feeling so much better. His strategy is to push a bit, combined with resting and meditation. I felt I was at a point where I could do that - push a bit. But, although he had many symptoms, his most prevalent was anxiety. He was bedridden for 6 months and did not drive for two years. So he knows what it is like to feel disabled, and he is healed and very active and back to life. ... But I feel like this physical symptom of vestibular issues is more challenging than the others in many ways.

 

I need some encouragement, and advice on how to manage this symptom when it rears it's ugly head, and how to feel like I still have a life and can have some joy even within my limitations - while others work and drive & stuff - I get so hung up on being disappointed with that.

[[La...]]

Hi Miss Fortitude,

I just want to send you some good, positive vibes and to remind you that you've had better times very recently, which likely means that you'll get back there again. It sounds like you were doing amazingly well, which is wonderful. I'm really curious about what Baylissa might have had to say and whether you could take some strength from that too. I hope so. I wasn't sure if she was still working in this area. Please do share anything that you feel might be valuable for the rest of us, if you don't mind doing so.

 

There have been lots of people that have passed through here. They've come and gone -- and gone back to their lives. While some people have taken the time to come back and tell us that their dizziness has passed, others haven't. And, unfortunately, that's a lost chance for others to get some much-needed encouragement and hope.

 

The vestibular issues can be extremely disabling, and that can be hard to explain to others -- and to ourselves. I don't have any fantastic suggestions to offer on that one. It's just hard. 

 

Anyway, that's it, really. I just wanted to acknowledge what you wrote and to say, "I understand those feelings too." We all need a bit of magic and luck and maybe some fairy dust to get through this and to come out the other end. Stay strong, Miss Fortitude!

[[He...]]

Miss Fortitude,

 

I'm so very sorry you are suffering with this again.  I can imagine that it's hard to come on the forum and say that after all this time.  Sitting on the sidelines is so discouraging and lonely.  It's so curious that after the disequilibrium improve so much that it would come back with a vengeance.  You must be incredibly disappointed. 

 

I'm interested in all of this as my disequilibrium and uncoordinated walking started way back when I was on too many Z pills and also drinking wine.  My husband and I had to fly home from NYC a day early in 2017 because I basically could not walk. We had been given amazing seats to Hamilton and it was pure misery for me on a night that should have been exciting and fun.  Standing in line for the bathroom in the theater was on of the worst experiences of my life.  I was clinging to the walls.  Absolutely horrific to look back on. When we came home, I spent 6 weeks essentially crawling from room to room because the walls were moving all around me. After a trip to the ER to make sure nothing more serious was going on,  I stopped the wine and got control of my Z med usage and eventually was able to move about again. But it came back in waves over and over again for a few years and I have no idea why.  I guess it was like what you are experiencing now.  Mine is mostly fine now (1 year off all meds) but it creeps back in for short spurts here and there.  It's baffling to me.  All I can say is I bet it gets better again.  I can relate to your situation having had mine come and go in varying degrees for several years now so you are not an anomaly. 

 

I'm sending you my best hopes that it gets better soon.  Again, so sorry.

 

Helen

[[Mi...]]

Lapis,

Thanks for your reply. This was something Baylissa told me back when she was still taking appointment sessions last year. Really the take away with Baylissa as far as dizziness/disequilibrium issues go is that she had it very bad herself and it hung on for a long time, and she healed from it. She told me to not push myself when this symptom comes up because my CNS is still healing/sensitive. It's not too hard to rest when it gets challenging. Not like I can drive or go jogging when it happens. Lol.

 

Helen,

I started with the dizziness issues during tolerance/withdrawal. It was much worse back then. It has returned again, then again,  but once i got off of all meds it improved. Glad to hear it lessened for you. It will keep improving for you the further out you go.

 

When it comes on strongly I sit and take some, slow,  deep breathes. It feels so good just to do that. When I go through waves when this symptom returns my life becomes very little. House, yard, dog, husband. Laughing helps and trying to find joy in the little things.

 

Prayers for all of us on the dizzy group. Be gentle with yourselves.

Hugs

- Fortitude

 

[[He...]]

Miss F,

 

I hope your wave stops soon.  Weirdly, my boatiness kicked up again this morning in a somewhat new style.  The ground is moving side to side under my feet and it's very disorienting.  So Baylissa advised to not try to push through theses boaty times? I always feel I should get up and try to walk more during it to "train" my brain to walk straight but maybe just sitting and breathing like you said would be more helpful.

 

thanks,

Helen

[[La...]]

This boaty/disequilibrium/balance issue symptom is back for me ... again.

 

It has come & gone over the last three years of this journey for me. It has left for 6 months. One time even 9 months.

 

The latest is that after having a pretty cruddy wave last fall where the balance/dizziness issue was the main symptom, I had over 6 months where it mostly abated. I only had it slightly in the evening once in a while. I was driving, going to stores, visiting with neighbors outdoors. I was even able to tackle walking over a tall walking bridge here in town that I would of never been able to do even a year ago. That was quite a celebratory milestone . I truly thought I was on my way to being healed. But, now I am in a wave again.

 

It started out mild for the first 3 or 4 weeks of it. I was still able to drive some and I had days where I felt completely normal all day. I actually did not have the dizziness the first few weeks of it. I was saying to myself: "I am in a wave, but I am SO glad that I don't have that dizziness crap." The wave was actually more just feeling chemical doom at first. Well, then that all changed and now the dizziness/ balance issues are back.

 

I thought I would just get by because having a wave at 3 years out can't be as bad as the previous ones right??? And it is not as bad as previous waves. Less intense, symptoms less frequent, but I figured it would be over with sooner. I think you lose patience as time moves on. I actually did not rest much the first 3 weeks because I really forgot how to behave in a wave.

 

I feel pretty good for the first part of the day, almost healed feeling. Then once the late afternoon/evening comes, that's when I get symptoms. Guess my CNS gets tired as the day goes on??  I have not been able to drive nor even be a passenger in a car for about a week now, and last night I was back to having some issues with it in the shower. I hate that. It can bring on some brief derealizaton too. Haven't had that symptom in well over two years.

 

It's hard to see other buddies on this forum who drive and work while they go through this. I've asked Baylissa Frederick this question & she says it's because they have more mental symptoms and less physical. I hate this symptom.  I feel disabled when I have it.

 

Also, I am finding out that coming onto this forum when you have a challenge after 3 years is hard too. People don't want to read about someone having struggles this far out & they avoid you.

 

The good news is that during my two years on this forum, I have seen people who really had a hard time with the vestibular symptoms heal and move on. Megan Z and Doveluv are two of them.

 

How do you cope with watching people work, drive,  those who are in withdrawal,  while we struggle with these things? It's like watching the world move by while I sit in the chair trying to rest and heal my system.

 

I know stress makes it worse,  and by golly what could be more stressful than healing from something so hard on our nervous system while doing it during a frickin pandemic??  I guess because of this we need even more self compassion and self care.

 

While the world opens up and people run around without a care in the world, I have to be okay with "sitting on the sidelines". Some days I'm okay with it telling myself I am glad I can step aside from the "rat race" while I heal (silver lining), and some days I am not. 

 

As of late I have been following David Powers benzo coach because I was feeling so much better. His strategy is to push a bit, combined with resting and meditation. I felt I was at a point where I could do that - push a bit. But, although he had many symptoms, his most prevalent was anxiety. He was bedridden for 6 months and did not drive for two years. So he knows what it is like to feel disabled, and he is healed and very active and back to life. ... But I feel like this physical symptom of vestibular issues is more challenging than the others in many ways.

 

I need some encouragement, and advice on how to manage this symptom when it rears it's ugly head, and how to feel like I still have a life and can have some joy even within my limitations - while others work and drive & stuff - I get so hung up on being disappointed with that.

Yep I know how you feel. Especially this far out. It’s been almost a year since I rode in the car. I just started doing that again recently. And I can only do it very short distances. When I do it, I get a nice prize of a wave immediately! Lovely, right? But I keep trying. My motto is push but don’t shove! How I’d love to go for a normal walk other than a few steps from my front door without feeling like the ground is tipping me over. Just a month or so I was enjoying doing simple things again because my boatiness, pulling sensation and unbalanced ( ataxia episodes) took a vacation. Wow I was elated! Just like you I thought “ yay they’re finally leaving” but as of Mother’s Day they’re back to being more intense and more often. So all I can do is sit on the sidelines again….yep, still dealing with this crap one month from being 2 years years off. Unbelievable! I’m ok with not driving right now. I just want to ride in a car to go somewhere and be able to get out of the car, go inside wherever and enjoy something normal like eat in a restaurant. Then ride back home. This is a veryyyyyyyyyy debilitating long lasting symptoms. Ridiculous IMO. But apparently it will heal because if it goes away before then it can again and will. So I’m so sorry that yours circled back too. It will go again. And don’t worry about other people on here and how they feel about you being 3 years off….it’s not your fault. Neither does it mean they will be 3 years. This is YOUR reality. You have every right just like everyone else to speak your truth and get support here. How long you’ve been off doesn’t matter. People are going to think what they want or say what they want regardless of you being 3 months or 3 years. Right now, you need support so forget about how they might feel. 

You are not sitting on the sidelines alone that’s for sure! I’m on the same bench girlfriend. But soon we’ll be off this bench and riding free. Fine tuning is going on.

I’m also curious about whether you’re having more stress? Trying anything new? Overdoing it? Etc. sometimes after feeling well for awhile if we have any of those factors they could send us temporarily backwards.

Big hugs to you 🤗

[[La...]]

Miss F,

 

I hope your wave stops soon.  Weirdly, my boatiness kicked up again this morning in a somewhat new style.  The ground is moving side to side under my feet and it's very disorienting.  So Baylissa advised to not try to push through theses boaty times? I always feel I should get up and try to walk more during it to "train" my brain to walk straight but maybe just sitting and breathing like you said would be more helpful.

 

thanks,

Helen

I also thought the same. Do as much normal as you can to “ retrain” the brain not to react so wildly. I’ve heard time and time again, if you can walk then walk especially if there’s dizziness/ boatiness/ balance issues. So I’m also curious to what Baylissa said?

But I do know, there are times that my symptoms won’t let me push through them. It’s almost like they’re warning me or protecting me from injury. When it’s intense, I lay down.

[[Mi...]]

This boaty/disequilibrium/balance issue symptom is back for me ... again.

 

It has come & gone over the last three years of this journey for me. It has left for 6 months. One time even 9 months.

 

The latest is that after having a pretty cruddy wave last fall where the balance/dizziness issue was the main symptom, I had over 6 months where it mostly abated. I only had it slightly in the evening once in a while. I was driving, going to stores, visiting with neighbors outdoors. I was even able to tackle walking over a tall walking bridge here in town that I would of never been able to do even a year ago. That was quite a celebratory milestone . I truly thought I was on my way to being healed. But, now I am in a wave again.

 

It started out mild for the first 3 or 4 weeks of it. I was still able to drive some and I had days where I felt completely normal all day. I actually did not have the dizziness the first few weeks of it. I was saying to myself: "I am in a wave, but I am SO glad that I don't have that dizziness crap." The wave was actually more just feeling chemical doom at first. Well, then that all changed and now the dizziness/ balance issues are back.

 

I thought I would just get by because having a wave at 3 years out can't be as bad as the previous ones right??? And it is not as bad as previous waves. Less intense, symptoms less frequent, but I figured it would be over with sooner. I think you lose patience as time moves on. I actually did not rest much the first 3 weeks because I really forgot how to behave in a wave.

 

I feel pretty good for the first part of the day, almost healed feeling. Then once the late afternoon/evening comes, that's when I get symptoms. Guess my CNS gets tired as the day goes on??  I have not been able to drive nor even be a passenger in a car for about a week now, and last night I was back to having some issues with it in the shower. I hate that. It can bring on some brief derealizaton too. Haven't had that symptom in well over two years.

 

It's hard to see other buddies on this forum who drive and work while they go through this. I've asked Baylissa Frederick this question & she says it's because they have more mental symptoms and less physical. I hate this symptom.  I feel disabled when I have it.

 

Also, I am finding out that coming onto this forum when you have a challenge after 3 years is hard too. People don't want to read about someone having struggles this far out & they avoid you.

 

The good news is that during my two years on this forum, I have seen people who really had a hard time with the vestibular symptoms heal and move on. Megan Z and Doveluv are two of them.

 

How do you cope with watching people work, drive,  those who are in withdrawal,  while we struggle with these things? It's like watching the world move by while I sit in the chair trying to rest and heal my system.

 

I know stress makes it worse,  and by golly what could be more stressful than healing from something so hard on our nervous system while doing it during a frickin pandemic??  I guess because of this we need even more self compassion and self care.

 

While the world opens up and people run around without a care in the world, I have to be okay with "sitting on the sidelines". Some days I'm okay with it telling myself I am glad I can step aside from the "rat race" while I heal (silver lining), and some days I am not. 

 

As of late I have been following David Powers benzo coach because I was feeling so much better. His strategy is to push a bit, combined with resting and meditation. I felt I was at a point where I could do that - push a bit. But, although he had many symptoms, his most prevalent was anxiety. He was bedridden for 6 months and did not drive for two years. So he knows what it is like to feel disabled, and he is healed and very active and back to life. ... But I feel like this physical symptom of vestibular issues is more challenging than the others in many ways.

 

I need some encouragement, and advice on how to manage this symptom when it rears it's ugly head, and how to feel like I still have a life and can have some joy even within my limitations - while others work and drive & stuff - I get so hung up on being disappointed with that.

Yep I know how you feel. Especially this far out. It’s been almost a year since I rode in the car. I just started doing that again recently. And I can only do it very short distances. When I do it, I get a nice prize of a wave immediately! Lovely, right? But I keep trying. My motto is push but don’t shove! How I’d love to go for a normal walk other than a few steps from my front door without feeling like the ground is tipping me over. Just a month or so I was enjoying doing simple things again because my boatiness, pulling sensation and unbalanced ( ataxia episodes) took a vacation. Wow I was elated! Just like you I thought “ yay they’re finally leaving” but as of Mother’s Day they’re back to being more intense and more often. So all I can do is sit on the sidelines again….yep, still dealing with this crap one month from being 2 years years off. Unbelievable! I’m ok with not driving right now. I just want to ride in a car to go somewhere and be able to get out of the car, go inside wherever and enjoy something normal like eat in a restaurant. Then ride back home. This is a veryyyyyyyyyy debilitating long lasting symptoms. Ridiculous IMO. But apparently it will heal because if it goes away before then it can again and will. So I’m so sorry that yours circled back too. It will go again. And don’t worry about other people on here and how they feel about you being 3 years off….it’s not your fault. Neither does it mean they will be 3 years. This is YOUR reality. You have every right just like everyone else to speak your truth and get support here. How long you’ve been off doesn’t matter. People are going to think what they want or say what they want regardless of you being 3 months or 3 years. Right now, you need support so forget about how they might feel. 

You are not sitting on the sidelines alone that’s for sure! I’m on the same bench girlfriend. But soon we’ll be off this bench and riding free. Fine tuning is going on.

I’m also curious about whether you’re having more stress? Trying anything new? Overdoing it? Etc. sometimes after feeling well for awhile if we have any of those factors they could send us temporarily backwards.

Big hugs to you 🤗

Lady Den,

Thank you for your thoughtful reply. I'm so sorry you are still dealing with this too. I am glad to hear you got a break though. That is a very good sign indeed.

 

Well I definitely was doing more over the last two months before the wave hit. I kept amping up the driving. There were a few trips to Walmart curbside where I felt I was pushing it. I had fatigue and felt "off". That was mixed in with many really great days where I  felt normal driving. In the March and April I was driving almost daily for the first time in the entire three years. So yes- much more activity.

 

The other thing is this. I am starting peri menopause. I actually missed two periods at the end of last summer/fall. They were accompanied by hot flashes. It did coincide with my last wave back then. I missed one period. Then I had a period in the middle of the wave. Then I missed that second period three weeks AFTER that wave ended.

 

I got all freaked out worrying that menopause was going to make withdrawal worse. I reached out for support. Pamster told me not to relate the two and don't go looking for info making my fears worse. She too had menopause & WD close together and menopause was such a piece of cake and she did not link the two together.

 

Well, the next seven months I had no hot flashes & regular periods so I figured that menopause was not affecting my withdrawal & moved on with my life. At about 3 weeks into this wave, even with regular periods so far, the hotflashes have returned.

 

I can handle hot flashes no problem. I am just worried that the hormone change may affect my healing , prolong it, whatever. All I can do is see if I get through this wave and if I feel normal again & still have hot flashes, I guess it's safe to say menopause is not affecting my withdrawal??? But, what does it matter if it is causes WD symptoms? I still have to deal with managing the symptoms regardless.

 

I know there are groups on this forum for menstrual issues & menopause, but I am terrified to look. I also will not take any hormones,  supplements etc. I do not take any meds.

 

I have a buddy who endured menopause during the first 1.5 years of her withdrawal. She basically told me that she couldn't always tell if it was a withdrawal symptom or menopause. Either way her menopause ended at 1.5 years into her WD, then at two years she was doing very very well, pretty much healed & continuing to do so at over 3 years now. She too endured some serious balance, boaty & equilibrium issues. Now she is moving on with normal life, just a few infrequent,  manageable symptoms.

 

I still have issues accepting. Like I have a great shower seat built in & I need to just sit down and shower & quit trying to be a tough girl. I've had to sit to shower many times before. I dealt with it, & I got better.

 

Here's to hoping to soon be better again. For all of us.

 

- Fortitude

 

[[Mi...]]

Miss F,

 

I hope your wave stops soon.  Weirdly, my boatiness kicked up again this morning in a somewhat new style.  The ground is moving side to side under my feet and it's very disorienting.  So Baylissa advised to not try to push through theses boaty times? I always feel I should get up and try to walk more during it to "train" my brain to walk straight but maybe just sitting and breathing like you said would be more helpful.

 

thanks,

Helen

I also thought the same. Do as much normal as you can to “ retrain” the brain not to react so wildly. I’ve heard time and time again, if you can walk then walk especially if there’s dizziness/ boatiness/ balance issues. So I’m also curious to what Baylissa said?

But I do know, there are times that my symptoms won’t let me push through them. It’s almost like they’re warning me or protecting me from injury. When it’s intense, I lay down.

 

Lady Den & Helen,

 

I too have heard to keep moving so our brain can compensate. I actually woke up with the room spinning when I rolled over in bed in Oct of 2018 . I was in tolerance withdrawl then unbeknownst to me. I did the Epley manuever. Don't think that really helped. I was "on a boat" from there on out until about 9 months AFTER I was done with the benzo. Then I've had long periods of being free of the dizzy crap mixed in with it returning.

 

During my time that I was not aware that my benzo was the issue. I had all the spinning chair, water in the ear tests, MRI of brain. I was told by the doctor heading up the dizziness/head neck dept at the Cleveland Clinic that my test results were normal and did not match my symptoms. She never really told me to do anything. I had to ask her if I should do any vestibular exercises. Her reply was : "I guess."

 

So since she was no help, I did my own research and yes, I too read to keep moving to compensate. My husband and I did our own vestibular rehab from youtube videos. It didn't really help, but just in addition to that, in the entire 3 years , I never stopped moving. Even early on i was wearing a fitbit sometimes reaching 10,000 steps a day. Not everyday, but a lot. I was only sedentary during really rough patches and it was never for long. Even just the other day I reached 7000 steps. More than my husband who is healthy. Lol.

 

Please do not "throw me under the wheels of the bus" because Baylissa does not like to be talked about negatively on forums. I only have positive things to say about her anyway. ... but I asked her how she handled her dizziness and balance issues when she was "walking like a drunk,  and holding onto walls" as she described it , and she said: "by sitting still". But I know she sat outside a lot. It's in her book. I don't think she sat still all of the time, just when it was bad. She exercised too. This is in one of her books.

 

So what is my take on that?? I really don't know. I still walk around everyday, but when I can't push through & it gets really intense, I sit down till it passes. Actually, if I lay around too much I think it can make it worse. Before this wave hit I had been walking in nature parks a few times a week. Before that I was dragging out lights and equipment to make videos of my husband and I cooking and stuff, or I stood at my sewing machine to pass the winter months. I've never really sat around in the entire 3 years.

 

But ya know...  when this wave came on it was easier to handle the first 3 weeks. The balance issues didn't kick in until week 5. I had spent the first few weeks resting more,  in bed more.... Hmmmm wonder if that brought about the dizziness? Idk . In the last 3 years I've felt I've tried both.  Staying active & pushing through versus taking it easy. I was playing pickle ball last fall a few days before that wave. I was feeling a bit dizzy during it evertime I picked up the ball, so I thought too much activity contributed back then and brought on that wave?

 

I don't know what the answer is. What is your thoughts based  on your experience, and from what you've witnessed here on the forum. Those who have had vestibular issues?? Push through versus rest???

 

- Fortitude

 

[[He...]]

Miss F,

 

It's so interesting that the things you tried (and I think Lady Den tried some of them too) were not helpful. It's almost like we have treatment resistant boatiness.  Well, we have time as a treatment but not much else.  I also try to move as much as possible and can sometimes get 7k steps or so.  But then today, I'm coping with about 10 different symptoms and pretty miserable so haven't walked much at all.  I'm like you in that if I sit too long, it gets worse but then there are days where trying too hard to retrain my brain makes me worse and I have to just sit down and collect myself for a while. I wonder if that's what Baylissa meant.  She's so great to let us know how things went for her. I just bought her memoir for my Kindle. But back on topic...I digress.  My feeling is that we should try to retrain on brain and keep walking and moving on the days we can. If we are having a really awful day, we don't push it since stressing our systems is hurtful.  I thought I had the boatiness beaten but here it is again.  I'm sorry it's back for you too and may we all emerge from it once again very soon!

 

Helen