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

[[La...]]

I’ve posted in here before but think it got lost. Can somebody please read the new topic I started and offer any hope. I’m so desperately hopeless from this symptom.  :'(

 

Hi offandon,

Can you provide us with a link to whatever it is you want us to read? We'd all have to search through your posts to find it, so it would be best if you could just copy and paste the link here, or, better yet, just explain what it is you're dealing with.

 

[[of...]]

Hi Lapis. Thank you

 

I’m posting here seeking some encouragement from anyone who has had this feeling go away after coming off their benzo.....boaty, pushing, pulling...constant feeling of this unless ...my head is resting against something like laying down and even then just more tolerable.

 

If I recall it first started in about 1996 or not 1997 . I had been on klonopin and Zoloft after a breakup for about a year and tapered off and was off for 1994-1996.

 

It has been my primary symptom ever since....many many years. When it came back I always thought it was just my anxiety coming back so (after having the usual ent tests) my dr would change my anti depressant and continue the low dose of klonopin. Most of the time it worked for a while. 

 

Since coming off of Prozac earlier this year and not being able to tolerate it again the only thing that worked was the mirtazipine for a while which I added in August. It seems to be coming back. I think it’s all in my head and here forever. It is such a disabling symptom and if I don’t have my head braced up against something it’s almost always present.

 

I recall not being able to sit thru my college graduation, work meetings, baptisms, weddings, etc. I don’t know what to do or how to get this to go away.

 

I don’t know how much longer I can keep this up. Im losing hope.  :'(  :'(

 

[[La...]]

Omigosh, offandon, I totally get your frustration and fear. I deal with it myself too. Are you planning to stay on the medication? It may be part of the problem, since all the psychiatric meds can cause dizziness. Have you discussed this stuff with the doctor, i.e. the role of the medication in your dizziness? I can't advise you directly on that, of course, but the medications can play havoc with balance. Did you happen to read the post and the link I gave to LostBoyScout earlier today? It's about medications and balance.

 

On the hope front, Baylissa Frederick took clonazepam for about 8 years, I believe, and she dealt with this kind of dizziness for quite awhile after she came off it. I read about it in her book, which you might be interested in checking out. In any case, it went away for her. I keep that in mind when I lose hope. I look to the Success Stories as well. Have you checked them out? They're there as a source of hope for the rest of us, so please take advantage of that.

 

Bear in mind that those who are doing better generally don't hang around BB (or this thread!) to encourage us. They just move on. So, we have to encourage each other as best we can.

 

Hang in there, okay?

[[of...]]

Omigosh, offandon, I totally get your frustration and fear. I deal with it myself too. Are you planning to stay on the medication? It may be part of the problem, since all the psychiatric meds can cause dizziness. Have you discussed this stuff with the doctor, i.e. the role of the medication in your dizziness? I can't advise you directly on that, of course, but the medications can play havoc with balance. Did you happen to read the post and the link I gave to LostBoyScout earlier today? It's about medications and balance.

 

On the hope front, Baylissa Frederick took clonazepam for about 8 years, I believe, and she dealt with this kind of dizziness for quite awhile after she came off it. I read about it in her book, which you might be interested in checking out. In any case, it went away for her. I keep that in mind when I lose hope. I look to the Success Stories as well. Have you checked them out? They're there as a source of hope for the rest of us, so please take advantage of that.

 

Bear in mind that those who are doing better generally don't hang around BB (or this thread!) to encourage us. They just move on. So, we have to encourage each other as best we can.

 

Hang in there, okay?

 

Thanks for letting me know about Baylissa having this too. I always read success stories to give me hope but I don’t see anyone who had the dizziness so persistently. So I get discouraged.

 

I have talked with the dr ...multiple drs. Nobody seems to know what it is.

 

The thing is I didn’t have this before. I first noticed it when I came off the first time but not til a while after. Then when I got back on that original Zoloft klonopin combo way way back, it totally went away. I was giving speeches in front of the class and driving long distances. It was like a miracle. So I know being on the meds didn’t cause it like as a side effect. But it came back so possibly tolerance ? It seemed to go away again but not as complexly with each successive anti depressant. S

 

I still plan on trying to finish out this taper and see what happens. But if I finish my taper and it still persists, I will try an SSRI again. I’m just worried it’s permanent because it’s been so long and seems like this is my baseline.

 

I do notice if I get super anxious it gets worse immediately.

 

 

[[La...]]

Hi offandon,

I'm not sure I"m reading your signature correctly. What are you currently taking? I know you said you're on mirtazapine, so that includes dizziness as a side effect. For sure, they SSRIs do. I have a book called "The Antidepressant Solution", and dizziness is one of the top side effects and withdrawal effects to watch out for. And, of course, benzos can cause it. But so can NSAIDs, antibiotics, antihistamines, anticholinergics, opioids, antidepressants, mood stabilizers, anti-psychotics, and a huge list of other meds. Dizziness is one  of the most common side effects there are, not to mention one of the most common reasons that people go to their doctors.

 

The thing is, Baylissa was off all medications for awhile (quite awhile, I believe) before her dizziness and other symptoms went away. She tried a bunch of different "remedies" before realizing that those things weren't necessarily going to be helpful for her. She kept looking for solutions, but really, in the end, she found out that her body needed time to heal without all of the extra stuff. Check out her book, if you're interested in her story. I really enjoyed reading it. It's awhile ago now, but I remember that I was really inspired. She's a very positive person, and I'd have to say that it was hard-earned. Like many of us, she went through a very difficult time, but she obviously came out the other end healthy, happy and whole.

 

As I said, most people just go off and live their lives once they're feeling better. They may not want to stick around here and be reminded of how difficult things were. I can understand that.

 

[[of...]]

Hi offandon,

I'm not sure I"m reading your signature correctly. What are you currently taking? I know you said you're on mirtazapine, so that includes dizziness as a side effect. For sure, they SSRIs do. I have a book called "The Antidepressant Solution", and dizziness is one of the top side effects and withdrawal effects to watch out for. And, of course, benzos can cause it. But so can NSAIDs, antibiotics, antihistamines, anticholinergics, opioids, antidepressants, mood stabilizers, anti-psychotics, and a huge list of other meds. Dizziness is one  of the most common side effects there are, not to mention one of the most common reasons that people go to their doctors.

 

The thing is, Baylissa was off all medications for awhile (quite awhile, I believe) before her dizziness and other symptoms went away. She tried a bunch of different "remedies" before realizing that those things weren't necessarily going to be helpful for her. She kept looking for solutions, but really, in the end, she found out that her body needed time to heal without all of the extra stuff. Check out her book, if you're interested in her story. I really enjoyed reading it. It's awhile ago now, but I remember that I was really inspired. She's a very positive person, and I'd have to say that it was hard-earned. Like many of us, she went through a very difficult time, but she obviously came out the other end healthy, happy and whole.

 

As I said, most people just go off and live their lives once they're feeling better. They may not want to stick around here and be reminded of how difficult things were. I can understand that.

 

Yeah my sig is confusing

 

Currently tapering klonopin ....down to .5 spread over the day ...never really been on more than at the most 1 mg and that was rarely ...and also now on 7.5 mirtazapine. I was so boaty in August before starting the mirtazipine that I couldn’t stabilize. Mirtazipine took it away for a while.

 

I don’t seem to get the boaty dizzy thing as a side affect. It has usually taken it away. Only exception was this August when I tried to get back on lexapro which had always worked in the past ...this time the dizziness went thru the roof with lexapro 

 

yes im hoping for non med solutions eventually. I just find it interesting that in the past the meds took it away and only comes back when tolerant I guess ?  Which is obviously a catch 22 and not a good solution 😕

[[La...]]

Hi offandon,

Thanks for clarifying what you're on. Clonazepam is what I was taking, and it's a pretty powerful, medium-to-long-acting benzo, so it stays in your system awhile. The effects can be cumulative, so it's very hard to say what's causing what. You can also have interactions between different drugs, which would be quite unpredictable. And you could be having withdrawal effects from tapering.

 

I remember the neurologist saying to me that the vestibular system is finely tuned and highly sensitive, and if it's off a little bit, a person can feel dizzy. He also said that we don't have the means to test it to the degree that we would like at the present time. I was quite dizzy when I saw him, but neurologically speaking, all the major worrisome things were ruled out.

 

But lots and lots and lots of people who have come through BB have been dizzy. Some of them post on this thread, but many do not. We simply do not have a data base that we can refer to for statistics or answers.

 

Did you happen to read that link that I posted again earlier today -- about medications and about allowing the brain to feel the symptoms without medication in order for it to try to normalize? I'll copy and paste it here:

 

Can Medication Help Me Feel Better?

 

The use of medication in treating vestibular disorders depends on whether the vestibular system dysfunction is in an initial or acute phase (lasting up to 5 days) or chronic phase (ongoing).

 

During the acute phase, and when other illnesses have been ruled out, medications that may be prescribed include vestibular suppressants to reduce motion sickness or anti-emetics to reduce nausea. Vestibular suppressants include three general drug classes: anticholinergics, antihistamines, and benzodiazepines. Examples of vestibular suppressants are meclizine and dimenhydinate (antihistamine-anticholinergics) and lorazepam and diazepam (benzodiazepines).

 

Other medications that may be prescribed are steroids (e.g., prednisone), antiviral drugs (e.g., acyclovir), or antibiotics (e.g., amoxicillin) if a middle ear infection is present. If nausea has been severe enough to cause excessive dehydration, intravenous fluids may be given.

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.

 

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

[[of...]]

Hi offandon,

Thanks for clarifying what you're on. Clonazepam is what I was taking, and it's a pretty powerful, medium-to-long-acting benzo, so it stays in your system awhile. The effects can be cumulative, so it's very hard to say what's causing what. You can also have interactions between different drugs, which would be quite unpredictable. And you could be having withdrawal effects from tapering.

 

I remember the neurologist saying to me that the vestibular system is finely tuned and highly sensitive, and if it's off a little bit, a person can feel dizzy. He also said that we don't have the means to test it to the degree that we would like at the present time. I was quite dizzy when I saw him, but neurologically speaking, all the major worrisome things were ruled out.

 

But lots and lots and lots of people who have come through BB have been dizzy. Some of them post on this thread, but many do not. We simply do not have a data base that we can refer to for statistics or answers.

 

Did you happen to read that link that I posted again earlier today -- about medications and about allowing the brain to feel the symptoms without medication in order for it to try to normalize? I'll copy and paste it here:

 

Can Medication Help Me Feel Better?

 

The use of medication in treating vestibular disorders depends on whether the vestibular system dysfunction is in an initial or acute phase (lasting up to 5 days) or chronic phase (ongoing).

 

During the acute phase, and when other illnesses have been ruled out, medications that may be prescribed include vestibular suppressants to reduce motion sickness or anti-emetics to reduce nausea. Vestibular suppressants include three general drug classes: anticholinergics, antihistamines, and benzodiazepines. Examples of vestibular suppressants are meclizine and dimenhydinate (antihistamine-anticholinergics) and lorazepam and diazepam (benzodiazepines).

 

Other medications that may be prescribed are steroids (e.g., prednisone), antiviral drugs (e.g., acyclovir), or antibiotics (e.g., amoxicillin) if a middle ear infection is present. If nausea has been severe enough to cause excessive dehydration, intravenous fluids may be given.

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.

 

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

 

 

Thank you Lapis for all your help. Hopefully I can complete this taper and see what’s what.

[[...]]

Hello to all the newbies.

 

Regarding success stories, I'll throw down some past posts which may be of help.

 

 

 

Thank you Lapis. I read the success stories but could not find many of them talking about floaty boat.

 

These names from a quick search of the Success Stories.  Imagine how many more are out there .. including those who've been on this thread at some point and don't come back to update. 

 

Megan (Admin)

Aft35

Ecc 3 1

MPERRIN

gaer

jaso19

BillyF

 

Try different searches such as "floaty" ... "boat" ... "dizzy" ... "sway" ... "rocky" ... etc.  People use different words to describe it.

 

It would also be very helpful, Frenchy, if you could add a signature so we understand your history.  I hope this makes you, and our other newbies, feel a little better. 

 

 

 

For those who may not know how to search through specific board and/or threads. 

 

• Click to the actual board/thread and then perform your search from there.  So, for instance, if you want to search Success Stories only, perform your search from here:  http://www.benzobuddies.org/forum/index.php?board=89.0
   
   
  
• You can also do an advanced search by clicking the "Search" button and then "Advanced search" (underneath the search box).
  It'll take you here:  http://www.benzobuddies.org/forum/index.php?action=search;advanced;search=
   
   
   
  
• You'll also see this at the bottom "+ Choose a board to search in, or search all".  If you click that, it's another way to narrow down your search.

 

Another tip for better search results.  Use Google to search through BB specifically (or any other website). 

 

• Precede your query with site:
   
  
• Example, copy/paste this query into Google. (Or add/edit your own words):  site:benzobuddies.org floaty boat, dizzy, rocky
   
  

 

Hope this helps dig up more and more ex-boaters!  Pity we can't add files to the forum, we could maintain our own little database.

 

Hoping everyone's having a sorta kinda okay day. 

 

 

 

 

 

And here's a very recent update from LovingMother who was really having a very rough time at one point (you can check her post history to see for yourself). 

 

It's been crazy long since I've been on here. Sending all of you love and sweets! I'm doing great. Still have some inner ear disturbance that can kick rocks but I'm working, writing books, traveling, swimming, power walking...it does get better!

 

 

 

I wish more of the recovered folk would drop by to give a little boost of encouragement but that's the way it goes, once people start feeling better, it's back to life they go. 

 

Wishing speedy healing to everyone. 

 

 

[[of...]]

Hello to all the newbies.

 

Regarding success stories, I'll throw down some past posts which may be of help.

 

 

 

Thank you Lapis. I read the success stories but could not find many of them talking about floaty boat.

 

These names from a quick search of the Success Stories.  Imagine how many more are out there .. including those who've been on this thread at some point and don't come back to update. 

 

Megan (Admin)

Aft35

Ecc 3 1

MPERRIN

gaer

jaso19

BillyF

 

Try different searches such as "floaty" ... "boat" ... "dizzy" ... "sway" ... "rocky" ... etc.  People use different words to describe it.

 

It would also be very helpful, Frenchy, if you could add a signature so we understand your history.  I hope this makes you, and our other newbies, feel a little better. 

 

 

 

For those who may not know how to search through specific board and/or threads. 

 

• Click to the actual board/thread and then perform your search from there.  So, for instance, if you want to search Success Stories only, perform your search from here:  http://www.benzobuddies.org/forum/index.php?board=89.0
   
   
  
• You can also do an advanced search by clicking the "Search" button and then "Advanced search" (underneath the search box).
  It'll take you here:  http://www.benzobuddies.org/forum/index.php?action=search;advanced;search=
   
   
   
  
• You'll also see this at the bottom "+ Choose a board to search in, or search all".  If you click that, it's another way to narrow down your search.

 

Another tip for better search results.  Use Google to search through BB specifically (or any other website). 

 

• Precede your query with site:
   
  
• Example, copy/paste this query into Google. (Or add/edit your own words):  site:benzobuddies.org floaty boat, dizzy, rocky
   
  

 

Hope this helps dig up more and more ex-boaters!  Pity we can't add files to the forum, we could maintain our own little database.

 

Hoping everyone's having a sorta kinda okay day. 

 

 

 

 

 

And here's a very recent update from LovingMother who was really having a very rough time at one point (you can check her post history to see for yourself). 

 

It's been crazy long since I've been on here. Sending all of you love and sweets! I'm doing great. Still have some inner ear disturbance that can kick rocks but I'm working, writing books, traveling, swimming, power walking...it does get better!

 

 

 

I wish more of the recovered folk would drop by to give a little boost of encouragement but that's the way it goes, once people start feeling better, it's back to life they go. 

 

Wishing speedy healing to everyone. 

 

Thank you !

[[La...]]

Yes, thanks so much, abcd! So nice of you to post that info for everyone, as well as LovingMother's update. That's fantastic news! I remember that she was quite dizzy, and as a mom of young son, it was very difficult for her to manage. It's great to know that she's doing so well.

 

offandon, I wish you well with your taper. It seems like you're getting very close to the end, which is wonderful. Then it will be a matter of giving your brain time to recuperate from the various medications. Keep up the good work!

[[Be...]]

My number one symptom is dizziness. I’m being pushed and pulled constantly whenever I stand or walk. It’s 20 times worse than the slight dizziness I’d been working on with my vestibular issues. To make matters worse my eyes (now relied upon more than ever for balance) got dry, my glasses prescription fluctuates, they seem slow to change focus, and I lost my ability to see at night (my ophthalmology research tells me night vision is the rods and cones at the edge of the retina and they are loaded with Gabba receptors).  I got neuropathy in my feet and my leg muscles have virtually no strength. Extreme fatigue,  Heart palpitations etc.

 

My question is has anyone had such an experience?  I have to get through the w/d before I can address the original vestibular issue. This seem like an impossible task. Vestibular requires movement to adjust the brain to the new condition but the w/d seems to overload my system as soon as I do anything.

 

Just wanted to see if anyone started with a vestibular issue and if they might have some feedback on how w/d affected it. I can’t tell if this os w/d on top of a vestibular issue or if the w/d was ototoxic causing additional damage to the ear and excitotoxic with an overload of glutamate destroying retina cells.

 

 

I'm sorry to hear that your ENT prescribed you such a horrible drug! I experience the exact same pulling/pushing and dizziness. I haven't really noticed dry eyes, but I do get blurred vision quite often. Clonazepam/Klonopin at 6mg a day can cause some nasty withdrawal symptoms. I would venture to say that all of your symptoms, including the more pronounced dizziness, is being caused by the Clonazepam, alone. Have you been diagnosed with Meniere's disease, by chance?

 

He took diazepam, Benz. 6 mg of clonazepam would be brutal. 6 mg of diazepam is not very high, comparatively speaking. For my cross-over, I took a maximum of 8 mg of diazepam and tapered from there, equivalent to less than 1 mg of clonazepam, depending on which chart you use.

 

Ohh, got it! I was thinking it was Klonopin or Clonazepam. Sorry about that! Yeah, when I read he was taking 6mg, my heart skipped a beat in horror!

[[La...]]

That would be REALLY bad. I hope no one is prescribed that amount. It's potent even at small doses.

[[Ho...]]

Hello everyone,

 

I have not been on here in a looong time! I started my own FB group and am busy there, but needed to check in with my boaty friends. 

 

I am still on the boat 24/7 every second. It never changes nor has lessened for almost 5.5 years now. Talk about torment!! I also have extreme head and upper body and ear pressure and tinnitus, thick DR, anxiety, ect. You guys know the drill.

 

I had extensive testing done at a specialty ENT clinic in 2014 with no answers. The doctor shrugged and said "drugs can do all sorts of things" while escorting me out. I had already been to a neurologist and had several tests there so just thought I'd ride it out and wait for healing. Forward to August 2018. A friend's granddaughter had a very sudden strange onset of crazy neurological symptoms including a movement disorder of some sort, and it calmed initially when she visited an Atlas Chiropractor.  I booked an appt. immediately.

 

The adjustment did not help, but he sent me for a new MRI and found I had Chiari Malformation which was confirmed by a neurosurgeon he sent me to. He had never had a patient with the boaty feeling but the head pressure is classic Chiari, and if that was relieved by surgery I knew I'd feel at least 30-40% better so I signed up! (He also said it would help the skin buzzing, numbness and more. Long story short, after brain surgery and a month recovery I am no better! UGH!

 

My 1 month post-op MRI showed he did indeed properly repair the Chiari, but because I had not felt relief yet he said the Chiari was evidently not my issue.  (You can have Chiari lay dormant all your life). Sigh. He then referred me to a neurological otologist, who looked over my intake info and said he could not help me because "it did not sound like an inner ear issue only". Sigh again.

 

He has now referred me to a ultra specialist in Chicago (I live in Milwaukee, 100 Miles away). who takes complex cases and generally sees patients after they have exhausted other resources. I guess that's me!

 

I had given up on doctors and was just waiting for healing, but new doors have opened so I am walking through. Maybe this could be an answer; either way I am still believing we will simply heal in time.

 

I did not take the time to go through all the comments on this thread. Other than checking in, I am wondering if there have been any healing stories here from the boatiness and if anyone has been to the "dizzy docs" in downtown Chicago?

 

 

[[Bi...]]

Had my mri last week. Everything came back normal. Which is kind of what I expected, but had to rule things out. In the past two weeks or so I actually had a few small windows. After months without them. Have still had a lot of bad days though as well. But those semi-good days gave me some desperately needed hope. So I think my plan at this point is to hold until things settle. As much as I would like to feel better like that more I don't want to go up in dose any further. I certainly don't feel stable enough to decrease at this time.

 

I think I have figured out my biggest trigger is loud environments with lights and lots of movement around me. I think my brain just becomes overwhelmed and goes into super dizzy can't even think mode. So I have tried to limit the amount of time I spend in those environments to before it gets to that point. Unfortunately that isn't the easiest at work all the time.

[[La...]]

Had my mri last week. Everything came back normal. Which is kind of what I expected, but had to rule things out. In the past two weeks or so I actually had a few small windows. After months without them. Have still had a lot of bad days though as well. But those semi-good days gave me some desperately needed hope. So I think my plan at this point is to hold until things settle. As much as I would like to feel better like that more I don't want to go up in dose any further. I certainly don't feel stable enough to decrease at this time.

 

I think I have figured out my biggest trigger is loud environments with lights and lots of movement around me. I think my brain just becomes overwhelmed and goes into super dizzy can't even think mode. So I have tried to limit the amount of time I spend in those environments to before it gets to that point. Unfortunately that isn't the easiest at work all the time.

 

Good news, BigSky! I'm glad your MRI is normal, since that rules out a number of things that could be going on. And it's great to hear that you got some windows too!

 

What you're describing about bright lights and busy environments is pretty common. Even people who aren't dizzy can find such environments (think "big box store", or "mall", or "supermarket") difficult. I never liked them myself and avoided them before I even became dizzy. They're just not pleasant for some people.

 

Anyway, I hope you'll continue to get windows and get some sparks of hope. Are you planning to taper at some point? Or to do any further testing?

[[La...]]

Hello everyone,

 

I have not been on here in a looong time! I started my own FB group and am busy there, but needed to check in with my boaty friends. 

 

I am still on the boat 24/7 every second. It never changes nor has lessened for almost 5.5 years now. Talk about torment!! I also have extreme head and upper body and ear pressure and tinnitus, thick DR, anxiety, ect. You guys know the drill.

 

I had extensive testing done at a specialty ENT clinic in 2014 with no answers. The doctor shrugged and said "drugs can do all sorts of things" while escorting me out. I had already been to a neurologist and had several tests there so just thought I'd ride it out and wait for healing. Forward to August 2018. A friend's granddaughter had a very sudden strange onset of crazy neurological symptoms including a movement disorder of some sort, and it calmed initially when she visited an Atlas Chiropractor.  I booked an appt. immediately.

 

The adjustment did not help, but he sent me for a new MRI and found I had Chiari Malformation which was confirmed by a neurosurgeon he sent me to. He had never had a patient with the boaty feeling but the head pressure is classic Chiari, and if that was relieved by surgery I knew I'd feel at least 30-40% better so I signed up! (He also said it would help the skin buzzing, numbness and more. Long story short, after brain surgery and a month recovery I am no better! UGH!

 

My 1 month post-op MRI showed he did indeed properly repair the Chiari, but because I had not felt relief yet he said the Chiari was evidently not my issue.  (You can have Chiari lay dormant all your life). Sigh. He then referred me to a neurological otologist, who looked over my intake info and said he could not help me because "it did not sound like an inner ear issue only". Sigh again.

 

He has now referred me to a ultra specialist in Chicago (I live in Milwaukee, 100 Miles away). who takes complex cases and generally sees patients after they have exhausted other resources. I guess that's me!

 

I had given up on doctors and was just waiting for healing, but new doors have opened so I am walking through. Maybe this could be an answer; either way I am still believing we will simply heal in time.

 

I did not take the time to go through all the comments on this thread. Other than checking in, I am wondering if there have been any healing stories here from the boatiness and if anyone has been to the "dizzy docs" in downtown Chicago?

 

Hi Hopeful One,

Wow! That's quite the story! I'm glad the brain surgery was successful in terms of the Chiari (not something I'm at all familiar with), but of course, I'm sorry to hear that it didn't help you with the other symptoms. Presumably, they're not related to the Chiari.

 

I'm not at all familiar with the doctors in Chicago. However, there have been a few studies and papers by NYC doctors regarding Mal de Debarquement, a syndrome whose symptoms are very similar to those experienced by most of us around here. They did a study on people who feel like they're still on a boat after having taken a cruise or experienced some other motion-induced symptoms. They also refer to "Spontaneous" or "Other" onset of similar symptoms, so arguably, we might fit in there. I think one of our BB boaters went to check it out, but I don't think she had any real improvement. She doesn't post a lot these days, though, and I'd rather not speak on anyone else's behalf.

 

 

 

 

[[Be...]]

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.[/i]

 

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

 

Excellent post, Lapis! I had to stop my taper because my dizziness was getting so bad that I couldn't drive to work. I'm back up to 1mg of Clonazepam, daily. I don't know if it's even possible to taper and work at the same time. 

[[Bi...]]

Had my mri last week. Everything came back normal. Which is kind of what I expected, but had to rule things out. In the past two weeks or so I actually had a few small windows. After months without them. Have still had a lot of bad days though as well. But those semi-good days gave me some desperately needed hope. So I think my plan at this point is to hold until things settle. As much as I would like to feel better like that more I don't want to go up in dose any further. I certainly don't feel stable enough to decrease at this time.

 

I think I have figured out my biggest trigger is loud environments with lights and lots of movement around me. I think my brain just becomes overwhelmed and goes into super dizzy can't even think mode. So I have tried to limit the amount of time I spend in those environments to before it gets to that point. Unfortunately that isn't the easiest at work all the time.

 

Good news, BigSky! I'm glad your MRI is normal, since that rules out a number of things that could be going on. And it's great to hear that you got some windows too!

 

What you're describing about bright lights and busy environments is pretty common. Even people who aren't dizzy can find such environments (think "big box store", or "mall", or "supermarket") difficult. I never liked them myself and avoided them before I even became dizzy. They're just not pleasant for some people.

 

Anyway, I hope you'll continue to get windows and get some sparks of hope. Are you planning to taper at some point? Or to do any further testing?

 

I don't have any further tests planned. I don't know what else to look at. I plan to start tapering again after a period of stability. Yesterday wasn't terrible but I had to leave and work from home today because it was just too bad.

[[La...]]

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.[/i]

 

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

 

Excellent post, Lapis! I had to stop my taper because my dizziness was getting so bad that I couldn't drive to work. I'm back up to 1mg of Clonazepam, daily. I don't know if it's even possible to taper and work at the same time. 

 

Hi Benz,

Did the updosing change your symptoms? Dizziness is definitely one of -- if not, THE -- most difficult symptoms to tolerate and try to function with, so I know what you're talking about re: work.

 

That quote you highlighted has stayed with me from the first time I read it on the Vestibular Disorders website. The fact that you have to let the brain actively experience the dizziness in order for it to adjust is a very, very difficult one to face. But it makes sense. The more you suppress the brain, the less it will be able to overcome the problem.

 

I found a similar quote in an ENT textbook when I was first trying to understand "vestibular compensation". I'd seen the term but hadn't really understand what it meant initially. It just boggled my mind that such info was in the ENT textbooks, yet I was told (by some medical professionals, that is) that my dose was too small to be causing such problems. No, it wasn't! The clonazepam that I was taking was a vestibular suppressant -- even in small doses. Apparently, clonazepam is potent and long-acting. The effects can be cumulative too.

 

Anyway, I'm just glad that we can access such info online and make appropriate decisions.

[[Be...]]

Nope.. I still have all of the strange spatial awareness, vertigo, pulling/pushing stuff. I feel like I've gone crazy 

[[Bi...]]

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.[/i]

 

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

 

Excellent post, Lapis! I had to stop my taper because my dizziness was getting so bad that I couldn't drive to work. I'm back up to 1mg of Clonazepam, daily. I don't know if it's even possible to taper and work at the same time. 

 

At times it does seem almost impossible to work while going through this. I am lucky to have a pretty understanding boss but there has been stretches where I had to talk to the wife about what our options are if I just can't go in anymore.

[[Ho...]]

Hello everyone,

 

I have not been on here in a looong time! I started my own FB group and am busy there, but needed to check in with my boaty friends. 

 

I am still on the boat 24/7 every second. It never changes nor has lessened for almost 5.5 years now. Talk about torment!! I also have extreme head and upper body and ear pressure and tinnitus, thick DR, anxiety, ect. You guys know the drill.

 

I had extensive testing done at a specialty ENT clinic in 2014 with no answers. The doctor shrugged and said "drugs can do all sorts of things" while escorting me out. I had already been to a neurologist and had several tests there so just thought I'd ride it out and wait for healing. Forward to August 2018. A friend's granddaughter had a very sudden strange onset of crazy neurological symptoms including a movement disorder of some sort, and it calmed initially when she visited an Atlas Chiropractor.  I booked an appt. immediately.

 

The adjustment did not help, but he sent me for a new MRI and found I had Chiari Malformation which was confirmed by a neurosurgeon he sent me to. He had never had a patient with the boaty feeling but the head pressure is classic Chiari, and if that was relieved by surgery I knew I'd feel at least 30-40% better so I signed up! (He also said it would help the skin buzzing, numbness and more. Long story short, after brain surgery and a month recovery I am no better! UGH!

 

My 1 month post-op MRI showed he did indeed properly repair the Chiari, but because I had not felt relief yet he said the Chiari was evidently not my issue.  (You can have Chiari lay dormant all your life). Sigh. He then referred me to a neurological otologist, who looked over my intake info and said he could not help me because "it did not sound like an inner ear issue only". Sigh again.

 

He has now referred me to a ultra specialist in Chicago (I live in Milwaukee, 100 Miles away). who takes complex cases and generally sees patients after they have exhausted other resources. I guess that's me!

 

I had given up on doctors and was just waiting for healing, but new doors have opened so I am walking through. Maybe this could be an answer; either way I am still believing we will simply heal in time.

 

I did not take the time to go through all the comments on this thread. Other than checking in, I am wondering if there have been any healing stories here from the boatiness and if anyone has been to the "dizzy docs" in downtown Chicago?

 

Hi Hopeful One,

Wow! That's quite the story! I'm glad the brain surgery was successful in terms of the Chiari (not something I'm at all familiar with), but of course, I'm sorry to hear that it didn't help you with the other symptoms. Presumably, they're not related to the Chiari.

 

I'm not at all familiar with the doctors in Chicago. However, there have been a few studies and papers by NYC doctors regarding Mal de Debarquement, a syndrome whose symptoms are very similar to those experienced by most of us around here. They did a study on people who feel like they're still on a boat after having taken a cruise or experienced some other motion-induced symptoms. They also refer to "Spontaneous" or "Other" onset of similar symptoms, so arguably, we might fit in there. I think one of our BB boaters went to check it out, but I don't think she had any real improvement. She doesn't post a lot these days, though, and I'd rather not speak on anyone else's behalf.

Thanks for the response. The Chicago docs don't matter now because after reviewing my symptoms, the docs who say on their web-site "welcome complex cases" won't see me!!! I know we all heal in time and guess I just have too wait! This dang boaty feeling is torment while I wait!

[[La...]]

Really, HopefulOne? Did they explain why? What kind of "ultra specialists" are they? Here's the link to the clinic in NYC, in case it's of interest to you. The focus is on Mal de Debarquement Syndrome -- whether it's motion-triggered or spontaneous onset. Around here, we've shared the studies written by the doctors at this clinic, and I believe one of our BBs made the trip there to check it out.

 

http://mdds.nyc/

[[an...]]

Well, I had a vertigo attack today. I am the one that’s getting vestibular rehab right now after being off benzos for almost 3 years. I was driving to work and I felt some anxiety and I thought I was having a panic attack. Then all of a sudden it was like everything was moving too much. By the time I got to work I pulled over and I could not get out of the car. It’s almost like I have symptoms of Ménière’s disease. I think this is brought on by a tiny bit of caffeine inside my hot chocolate. This is the second time it’s happened in two months. The last time it happened was when I started drinking chai tea (also has caffeine). When it happens, I literally cannot walk. The whole room and universe is spinning. If I lay still I’m fine. It lasts about 24 hours. Anyone else?