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

[[...]]

Oh, geez, Lap, sorry to hear!  Do you have any idea what may have brought it on?  Were you well nourished?  Did you have freezing with Epi in it, do you think that may have had something to do with it?    Just take good care, my friend, keep yourself well hydrated, okay?

 

I do still want to read those studies you dropped off, just haven't got around to them yet, am interested to read the individualized treatment strategies (besides ADs of course, the panacea for all that ails one).

[[La...]]

Hey abcd,

Thanks for the well wishes. I think I was well-nourished, but I was in a lot of pain (feet) and quite dizzy and exhausted (little sleep the night before). I was also not expecting the pain from the needle, so it was a bit of a shock, I think. I had to sing my way through the rest of the appointment (well, in my mind, that is -- Bob Marley's "One Love" x 10!). That darn drill made it hard to hear my inner Bob! Yikes, that's such a nasty sound! The dentist was pretty kind, though, and at the end, he said he wished the drill would make music rather than that awful grinding noise. Cool idea!

 

I'm not sure what was in the needle. What are the kinds? What should one ask for?

[[Ir...]]

Hello All,

Here's another recent study that may be of interest. It's called "Treatment of Persistent Postural-Perceptual Dizziness (PPPD) and Related Disorders".

 

Abstract

PURPOSE OF REVIEW:  Persistent postural-perceptual dizziness (PPPD) is a newly defined disorder of functional dizziness that in the International Classification of Diseases in its 11th revision (ICD-11) supersedes phobic postural vertigo and chronic subjective dizziness. Despite efforts to unify the diagnosis of functional (somatoform) dizziness, patients will present with a variety of triggers, perpetuating factors, and comorbidities, requiring individualized treatment. This article will review different treatment strategies for this common functional neurological disorder and provide practical recommendations for tailored therapy.

 

 

RECENT FINDINGS:  An emerging understanding of the underlying pathophysiology that considers vestibular, postural, cognitive, and emotional aspects can enable patients to profit from vestibular rehabilitation, as well as cognitive-behavioral therapy (CBT). Crucially, approaches from CBT should inform and augment physiotherapeutic techniques, and, on the other hand, vestibular exercises or relaxation techniques can be integrated into CBT programs. Antidepressant medication might further facilitate rehabilitation, though the mechanisms are yet to be elucidated, and the level of evidence is low. In PPPD and related disorders, vestibular rehabilitation combined with CBT, and possibly supported by medication, can help patients escape a cycle of maladaptive balance control, recalibrate vestibular systems, and regain independence in everyday life.

https://www.ncbi.nlm.nih.gov/pubmed/30315375

 

You'll see a reference to the possible use of antidepressant medication, but then they say "the mechanisms are yet to be elucidated, and the level of evidence is low." Yes. I would hope that medications whose mechanisms of action are not well understood and which include dizziness as a possible side effect are not suggested to people who are dizzy.   

 

This new study may also be of interest:

https://www.ncbi.nlm.nih.gov/m/pubmed/30220332/?i=4&from=/29459843/related

 

[[La...]]

Yes, thanks, IrishMonkey! I already read it and printed it out. Again, it's hypothetical, but it's interesting to see the references to GABA and hormonal changes. I'm not familiar with CGRP, though.

[[be...]]

Hey abcd,

Thanks for the well wishes. I think I was well-nourished, but I was in a lot of pain (feet) and quite dizzy and exhausted (little sleep the night before). I was also not expecting the pain from the needle, so it was a bit of a shock, I think. I had to sing my way through the rest of the appointment (well, in my mind, that is -- Bob Marley's "One Love" x 10!). That darn drill made it hard to hear my inner Bob! Yikes, that's such a nasty sound! The dentist was pretty kind, though, and at the end, he said he wished the drill would make music rather than that awful grinding noise. Cool idea!

 

I'm not sure what was in the needle. What are the kinds? What should one ask for?

 

Lapis,

 

Can't believe you fainted while sitting up.  I'm glad you're okay.  I ask for carbocaine instead of the epinephrine for freezing.  Not sure if it makes any difference, but based on research I've done here, I ask for this, just in case and they always oblige.  If the procedure is more surgical and quick blood-clotting is needed, then they need to go with the epi.  That's pretty sweet what your dentist said--music instead of the drill sound. Wouldn't that be nice.  I most especially hate the sound of the high-pitched drill.  It brings back bad childhood memories of the dentist before I knew I had extra nerves in my mouth that need freezing.

 

Glad the worst is over.  Take care. 

 

*Not quite right what I said...epinephrine is a "vasoconstrictor", so in that way it helps stop bleeding. 

[[La...]]

Hey abcd,

Thanks for the well wishes. I think I was well-nourished, but I was in a lot of pain (feet) and quite dizzy and exhausted (little sleep the night before). I was also not expecting the pain from the needle, so it was a bit of a shock, I think. I had to sing my way through the rest of the appointment (well, in my mind, that is -- Bob Marley's "One Love" x 10!). That darn drill made it hard to hear my inner Bob! Yikes, that's such a nasty sound! The dentist was pretty kind, though, and at the end, he said he wished the drill would make music rather than that awful grinding noise. Cool idea!

 

I'm not sure what was in the needle. What are the kinds? What should one ask for?

 

Lapis,

 

Can't believe you fainted while sitting up.  I'm glad you're okay.  I ask for carbocaine instead of the epinephrine for freezing.  Not sure if it makes any difference, but based on research I've done here, I ask for this, just in case and they always oblige.  If the procedure is more surgical and quick blood-clotting is needed, then they need to go with the epi.  That's pretty sweet what your dentist said--music instead of the drill sound. Wouldn't that be nice.  I most especially hate the sound of the high-pitched drill.  It brings back bad childhood memories of the dentist before I knew I had extra nerves in my mouth that need freezing.

 

Glad the worst is over.  Take care.

 

Hi benzohno,

Thanks so much for the advice! I really didn't think about any of this stuff in advance of the appointment. I was trying to psyche myself up and stay positive, and truthfully, I don't know about the different kinds of freezing so I wouldn't have thought to ask. I've never had an issue before, but then again, I haven't had any major dental work for about four years.

 

And yes, fainting while sitting is really gross! It has happened to me before because my benzo dizziness prevented me from getting to a better position before fainting. It's really, really hard to get my blood pressure back up while vertical. UGH! Third time this year! Two needles sent me over the edge, I guess. And waking up from fainting with a frozen mouth was scary as hell. They were going to call 911 but didn't when I started to talk again. I take it my face was a "whiter shade of pale"!

 

Anyway, yes, thank you, I think the worst is behind me. I'm just praying it will be a less dizzy day when I go for the permanent crown in a couple of weeks. They'll just have to take out this temporary one and put in the permanent one. I don't think there's any freezing involved with that...at least, I hope not!

 

Take care too, benzohno!

[[be...]]

Thank you Lapis!  That's horrible, three times this year.  I remember one time someone caught you before you hit the floor.  I wondered if you were having a dizzier day that day because I saw you mentioned the day before it was a less dizzy day.  I'm sure you already do this, but when there are needles involved, I NEVER look at the needle, just the sight of it sends my heart racing.  I'm sure the placement of the crown will be a breeze.  I had one placed not so long ago and it was easy, no freezing.

 

I have an "inner Bob" too.  In my head I often sing Bob Marley's, "Don't worry about a thing" to soothe myself. 

[[La...]]

Thank you Lapis!  That's horrible, three times this year.  I remember one time someone caught you before you hit the floor.  I wondered if you were having a dizzier day that day because I saw you mentioned the day before it was a less dizzy day.  I'm sure you already do this, but when there are needles involved, I NEVER look at the needle, just the sight of it sends my heart racing.  I'm sure the placement of the crown will be a breeze.  I had one placed not so long ago and it was easy, no freezing.

 

I have an "inner Bob" too.  In my head I often sing Bob Marley's, "Don't worry about a thing" to soothe myself. 

 

That's fantastic, benzohno! Apparently, we have the same inner Bob record player (remember those?!), because next up on my head's playlist was "Three Little Birds" too, followed immediately by "No Woman No Cry"! I just never got past "One Love" because I was so busy trying not to fall off the chair from dizziness while keeping my mouth open for the fun (!) dental work.

 

And yes, you're right, I'd had a less dizzy day on the day before, and of course, the day after was a less dizzy one too. Right! Had to be that way. I definitely did NOT look at the needle, but I think the upper palate is particularly sensitive and does NOT like having needles placed in it. If I get a blood test, I always have to lie down in order to avoid fainting. My blood pressure has been low all my life, so I don't have much leeway for things like, um...ya know...intense pain. ARGH!

 

 

 

 

[[Bi...]]

So I have read a number of pages in this group, but I have not been able to get through them all. This is going to be a pretty long post but I am just beyond frustrated and worn down. I'm mostly just looking for thoughts, suggestions, hope and maybe some reassurance I guess.

 

I'm in month 16 of my taper after being a many different benzos for almost a decade with periods off and on. During this taper my most lingering symptom has always been dizzy/lightheaded feeling. It would usually start a week or so after a decrease then start to to get better in week 3-4. I would hold there for a week then make another decrease. I originally crossed over from K to 20mg V. That was too much and I quick dropped it to 16mg. I dose 4x a day to try to keep it level. I was also on a very lose dose of amitriptyline. 10mg. I tapered that and my last dose was around March/April. That may or may not be relevant later. Since it really isn't in my signature i don't think I went from 16mg V to 6.5mg V in the space of about 10 months.

 

In Jan/Feb I got a really severe ear infection in one ear and a little in the other. Hearing was way off based on visit to ENT. They put me on antibiotics. Cleared up the ear infection but I still didn't feel as good as I did before. For months I continued to have hearing loss, fullness and severe ringing. I started to see the ENT. They thought I might need tubes to clear it up so they cut my drum but didn't find anything to warrant a tube. Put me on steroids. Those were no fun to say the least.

 

I made my last decrease(.5mg) to 6.5mg May 2nd. Come May/June the ear problems seemed to have mostly cleared up, still occasional fullness and hearing issues. The dizzy never went away and in late June/July it got so severe that I no longer felt safe driving and stopped going in to work. Thankfully I was able to work from home. But it was so bad I coudln't go anywhere or do anything beyond just barely care for myself. It was a feeling beyond dizzy. Hard to explain but if anyone else might understand it some of you might. I got in to see the ENT and told him something is wrong. They did the VNT test and found only a slight nystagmus.The audiologist was not pleased with me that I had not followed the directions to not take any benzo for two days prior. But frankly I didn't feel like I was in a place to even attempt that. They referred me to PT. This seemed to help but I couldn't live like that and to hedge my bets corrected my dose back to 8mg from 6.5mg V at the same time. If I could have done separately I would but again I needed to go to work to support my wife and kid. Fairly quickly I was able to go back to work and function somewhat better. However the symptoms are still present and I have terrible days where I barely function. For months now I have just been winging it at work and my productivity is nowhere near where it should be and needs to be. Thankfully I work at a company where it is pretty difficult to get fired. 

 

I started googling and it seems like it is possible for benzos to cause a nystagmus? My biggest problems seem to be movement, if I try to follow vehicles as they drive by with my eyes only, or focus on a moving object it gets very intense. I can feel the symptoms coming on rapidly. This also happens with quick movements of my head. I also sometimes feel like my eyes are not focusing on the same thing or are not functioning in sync if that makes sense. Sometimes reading especially on a computer screen gets difficult mostly when the symptoms are already amped up. I can't do crowded events like the zoo etc. My memory has gone to hell, I forget things almost instantly and I can't remained focused for any length of time. I just feel like I am in a fog all the time. I feel less steady than I should most of the time as well.

 

I am at the point where I met the deductible for my stupidly high deductible plan and my plan is to push the ENT to send me to neuro and for an MRI. My PT who is great doesn't think they will find anything based on his experience but understands I need to rule it out and there is no better time than before the end of the year and my deductible resets. I seem to have hit a plateau as far as improving.

 

I guess if you made it this far in my novel, has anyone else had issues even similar to mine? What helped, what didn't? I'm really stretching for anything at this point because after so many months like this I just am worn down and getting pretty down. It is really affecting me work-wise but more importantly marriage/family wise. I don't see much light at the end anymore after what I had thought was a taper that was going pretty well. I'm not happy I had to correct my dose but I know I had to. But did I not go far enough? I know the standard answer is I went faster than my body could handle and I can accept that, but only after I have exhausted every other option because I don't want to do this for years on end. I have now been back at 8mg for about 3ish months.

[[of...]]

Hi Floaty Boaters,

Here's a question: Have you noticed any patterns in your dizziness? Is it the same intensity everyday? Mine varies from bearable to completely unbearable. I don't usually get two unbearable days in a row, and those bearable days give me a little window into the world of feeling better. It seems that my brain "gets it" one day and then doesn't get it at all the next day. I know that healing isn't linear but it seems so extreme. On those better days, though, I feel hopeful.

 

Mine has been on going for many years. It seems to directly correlate to being on an anti depressant for me. If I’m on one with the klonopin it seems to go away until I get too low on klonopin. I always thought it was increased anxiety and my doc would try a different anti depressant and increase klonopin for a bit and that seemed to work for a while.  It makes everything unenjoyable and scary.  I remember sitting in meetings having to hold my head against the wall or lean it on my arm.

 

This time when I got on mirtazipine in August it decreased for a bit but now that I’m lower on klonopin it’s coming back. I also have tinnitus which is worse as I taper.

 

It has always been my primary symptom. It’s just awful. I’ve been to numerous ear docs and have found nothing. The neuro doesn’t think it’s anything but will be getting an MRI i guess since I’ve never had one.

 

Yes those non boaty days are amazing.

 

 

[[of...]]

So I have read a number of pages in this group, but I have not been able to get through them all. This is going to be a pretty long post but I am just beyond frustrated and worn down. I'm mostly just looking for thoughts, suggestions, hope and maybe some reassurance I guess.

 

I'm in month 16 of my taper after being a many different benzos for almost a decade with periods off and on. During this taper my most lingering symptom has always been dizzy/lightheaded feeling. It would usually start a week or so after a decrease then start to to get better in week 3-4. I would hold there for a week then make another decrease. I originally crossed over from K to 20mg V. That was too much and I quick dropped it to 16mg. I dose 4x a day to try to keep it level. I was also on a very lose dose of amitriptyline. 10mg. I tapered that and my last dose was around March/April. That may or may not be relevant later. Since it really isn't in my signature i don't think I went from 16mg V to 6.5mg V in the space of about 10 months.

 

In Jan/Feb I got a really severe ear infection in one ear and a little in the other. Hearing was way off based on visit to ENT. They put me on antibiotics. Cleared up the ear infection but I still didn't feel as good as I did before. For months I continued to have hearing loss, fullness and severe ringing. I started to see the ENT. They thought I might need tubes to clear it up so they cut my drum but didn't find anything to warrant a tube. Put me on steroids. Those were no fun to say the least.

 

I made my last decrease(.5mg) to 6.5mg May 2nd. Come May/June the ear problems seemed to have mostly cleared up, still occasional fullness and hearing issues. The dizzy never went away and in late June/July it got so severe that I no longer felt safe driving and stopped going in to work. Thankfully I was able to work from home. But it was so bad I coudln't go anywhere or do anything beyond just barely care for myself. It was a feeling beyond dizzy. Hard to explain but if anyone else might understand it some of you might. I got in to see the ENT and told him something is wrong. They did the VNT test and found only a slight nystagmus.The audiologist was not pleased with me that I had not followed the directions to not take any benzo for two days prior. But frankly I didn't feel like I was in a place to even attempt that. They referred me to PT. This seemed to help but I couldn't live like that and to hedge my bets corrected my dose back to 8mg from 6.5mg V at the same time. If I could have done separately I would but again I needed to go to work to support my wife and kid. Fairly quickly I was able to go back to work and function somewhat better. However the symptoms are still present and I have terrible days where I barely function. For months now I have just been winging it at work and my productivity is nowhere near where it should be and needs to be. Thankfully I work at a company where it is pretty difficult to get fired. 

 

I started googling and it seems like it is possible for benzos to cause a nystagmus? My biggest problems seem to be movement, if I try to follow vehicles as they drive by with my eyes only, or focus on a moving object it gets very intense. I can feel the symptoms coming on rapidly. This also happens with quick movements of my head. I also sometimes feel like my eyes are not focusing on the same thing or are not functioning in sync if that makes sense. Sometimes reading especially on a computer screen gets difficult mostly when the symptoms are already amped up. I can't do crowded events like the zoo etc. My memory has gone to hell, I forget things almost instantly and I can't remained focused for any length of time. I just feel like I am in a fog all the time. I feel less steady than I should most of the time as well.

 

I am at the point where I met the deductible for my stupidly high deductible plan and my plan is to push the ENT to send me to neuro and for an MRI. My PT who is great doesn't think they will find anything based on his experience but understands I need to rule it out and there is no better time than before the end of the year and my deductible resets. I seem to have hit a plateau as far as improving.

 

I guess if you made it this far in my novel, has anyone else had issues even similar to mine? What helped, what didn't? I'm really stretching for anything at this point because after so many months like this I just am worn down and getting pretty down. It is really affecting me work-wise but more importantly marriage/family wise. I don't see much light at the end anymore after what I had thought was a taper that was going pretty well. I'm not happy I had to correct my dose but I know I had to. But did I not go far enough? I know the standard answer is I went faster than my body could handle and I can accept that, but only after I have exhausted every other option because I don't want to do this for years on end. I have now been back at 8mg for about 3ish months.

 

 

I’m sorry you’re having these issues too. Sounds like benzo w/d but after reading up on persistent perceptual postural dizziness and how it’s often relieved with anti depressants .... which seems to correlate for me.... it could also be the amitryptiline (sp?) taper is contributing? Not sure if yours is like mine just throwing it out there. Hang on. I know we will get to the bottom of this. Been a rough night for me as well.

[[La...]]

So I have read a number of pages in this group, but I have not been able to get through them all. This is going to be a pretty long post but I am just beyond frustrated and worn down. I'm mostly just looking for thoughts, suggestions, hope and maybe some reassurance I guess.

 

I'm in month 16 of my taper after being a many different benzos for almost a decade with periods off and on. During this taper my most lingering symptom has always been dizzy/lightheaded feeling. It would usually start a week or so after a decrease then start to to get better in week 3-4. I would hold there for a week then make another decrease. I originally crossed over from K to 20mg V. That was too much and I quick dropped it to 16mg. I dose 4x a day to try to keep it level. I was also on a very lose dose of amitriptyline. 10mg. I tapered that and my last dose was around March/April. That may or may not be relevant later. Since it really isn't in my signature i don't think I went from 16mg V to 6.5mg V in the space of about 10 months.

 

In Jan/Feb I got a really severe ear infection in one ear and a little in the other. Hearing was way off based on visit to ENT. They put me on antibiotics. Cleared up the ear infection but I still didn't feel as good as I did before. For months I continued to have hearing loss, fullness and severe ringing. I started to see the ENT. They thought I might need tubes to clear it up so they cut my drum but didn't find anything to warrant a tube. Put me on steroids. Those were no fun to say the least.

 

I made my last decrease(.5mg) to 6.5mg May 2nd. Come May/June the ear problems seemed to have mostly cleared up, still occasional fullness and hearing issues. The dizzy never went away and in late June/July it got so severe that I no longer felt safe driving and stopped going in to work. Thankfully I was able to work from home. But it was so bad I coudln't go anywhere or do anything beyond just barely care for myself. It was a feeling beyond dizzy. Hard to explain but if anyone else might understand it some of you might. I got in to see the ENT and told him something is wrong. They did the VNT test and found only a slight nystagmus.The audiologist was not pleased with me that I had not followed the directions to not take any benzo for two days prior. But frankly I didn't feel like I was in a place to even attempt that. They referred me to PT. This seemed to help but I couldn't live like that and to hedge my bets corrected my dose back to 8mg from 6.5mg V at the same time. If I could have done separately I would but again I needed to go to work to support my wife and kid. Fairly quickly I was able to go back to work and function somewhat better. However the symptoms are still present and I have terrible days where I barely function. For months now I have just been winging it at work and my productivity is nowhere near where it should be and needs to be. Thankfully I work at a company where it is pretty difficult to get fired. 

 

I started googling and it seems like it is possible for benzos to cause a nystagmus? My biggest problems seem to be movement, if I try to follow vehicles as they drive by with my eyes only, or focus on a moving object it gets very intense. I can feel the symptoms coming on rapidly. This also happens with quick movements of my head. I also sometimes feel like my eyes are not focusing on the same thing or are not functioning in sync if that makes sense. Sometimes reading especially on a computer screen gets difficult mostly when the symptoms are already amped up. I can't do crowded events like the zoo etc. My memory has gone to hell, I forget things almost instantly and I can't remained focused for any length of time. I just feel like I am in a fog all the time. I feel less steady than I should most of the time as well.

 

I am at the point where I met the deductible for my stupidly high deductible plan and my plan is to push the ENT to send me to neuro and for an MRI. My PT who is great doesn't think they will find anything based on his experience but understands I need to rule it out and there is no better time than before the end of the year and my deductible resets. I seem to have hit a plateau as far as improving.

 

I guess if you made it this far in my novel, has anyone else had issues even similar to mine? What helped, what didn't? I'm really stretching for anything at this point because after so many months like this I just am worn down and getting pretty down. It is really affecting me work-wise but more importantly marriage/family wise. I don't see much light at the end anymore after what I had thought was a taper that was going pretty well. I'm not happy I had to correct my dose but I know I had to. But did I not go far enough? I know the standard answer is I went faster than my body could handle and I can accept that, but only after I have exhausted every other option because I don't want to do this for years on end. I have now been back at 8mg for about 3ish months.

 

Hello BigSky!

Thanks for jumping in here and sharing your story. A couple of things came to mind for me as I read your story, so I'll just take them one by one.

 

First of all, I wanted to mention that benzodiazepines are known in the medical literature as "vestibular suppressants", meaning they interfere with the process of vestibular compensation or normalization. So, the fact that you're still taking a benzo means that you might experience dizziness. It's just part of the side effect profile of this family of medications. As well, withdrawing from benzos can cause dizziness, so it's all par for the course. So, as long as you're on a benzo and even after you get off, you may experience dizziness. I know it sucks, but it's a fact.

 

Also, the vestibular system involves the activity of a number of different neurotransmitters, including GABA, serotonin and a number of others. This PubMed abstract briefly explains it:

 

https://www.ncbi.nlm.nih.gov/pubmed/27638061 

 

So, any medication that affects neurotransmitters involved in the vestibular system can postentially cause dizziness. That list includes , benzodiazepines, Z-drugs, antidepressants, antipsychotics and other psychiatric medications.

 

Antibiotics, too, can affect balance, and you mentioned that you had to take one for a period of time for that ear infection.

 

I would definitely agree that further testing would be a good idea, just to ensure that you're not missing anything. When I became dizzy, I had a lot of testing, including vision, hearing/balance, neurological, CAT scan, etc. It helped to eliminate possible causes of dizziness.

 

I was wondering about the multiple dosing of diazepam/Valium. It has a long half-life, so it doesn't really need to be dosed multipe times during a day. It stays in the system for a very long time, which is why Dr. Ashton suggested it as a taper medication. One would not get the ups and downs that might come with other, shorter-acting meds. Did someone advise you to do your taper that way? I don't want to cross other advice you might have had, and I'm no expert on these things, but it does strike me as a possible reason for difficulty in your situation. The Ashton Manual has a number of charts that give ideas about tapering, which you might want to check out (i.e. if you haven't already).

 

It sounds like you had some vestibular rehabilitation therapy, and it was somewhat helpful. Are you continuing to do that? What does the therapist say about your situation? Is s/he knowledgeable about benzos and antidepressants?

 

Okay, so I think I'll leave it there and wait to hear back from you. In the first few pages of this (very long)thread, there are some links and references that might be helpful. But I've also posted info that I've come across along the way.

 

Take care, BigSky, and hang in there!

 

 

 

 

 

 

[[La...]]

Hi Floaty Boaters,

Here's a question: Have you noticed any patterns in your dizziness? Is it the same intensity everyday? Mine varies from bearable to completely unbearable. I don't usually get two unbearable days in a row, and those bearable days give me a little window into the world of feeling better. It seems that my brain "gets it" one day and then doesn't get it at all the next day. I know that healing isn't linear but it seems so extreme. On those better days, though, I feel hopeful.

 

Mine has been on going for many years. It seems to directly correlate to being on an anti depressant for me. If I’m on one with the klonopin it seems to go away until I get too low on klonopin. I always thought it was increased anxiety and my doc would try a different anti depressant and increase klonopin for a bit and that seemed to work for a while.  It makes everything unenjoyable and scary.  I remember sitting in meetings having to hold my head against the wall or lean it on my arm.

 

This time when I got on mirtazipine in August it decreased for a bit but now that I’m lower on klonopin it’s coming back. I also have tinnitus which is worse as I taper.

 

It has always been my primary symptom. It’s just awful. I’ve been to numerous ear docs and have found nothing. The neuro doesn’t think it’s anything but will be getting an MRI i guess since I’ve never had one.

 

Yes those non boaty days are amazing.

 

Hi offandon,

Well, I have to commend and encourage you on how close you are to getting off the Klonopin! It looks like you're almost there. Keep up the great work!

 

As far as which one of your meds is causing you to be dizzy and to have tinnitus, I don't think it's easy to tell. As I noted above, all psychiatric meds carry the risk of dizziness as a side effect and as a withdrawal efefct. There's also the unknown "chemical soup" effect of having different meds in your system simultaneously, which can create other effects. Also, metabolism of medication is largely determined by genetics, so we're all very different on that one.

 

One other thing you mentioned in your post is that your doctor has changed the type of medication you've been on, so that, too, could be a factor. You've got multiple meds and multiple changes.

 

Anyway, if your plan is to get off all of them, then you seem to be on the right track. Are you following a particular taper plan? When I was tapering off my medication, I wasn't on BB, and I just followed the Ashton Manual. If the thinking has completely changed on how to do tapers, e.g. how long to taper, whether to do microtapers, etc., then it came much later after I read the manual. I guess the other BB sections can be helpful with all of that.

 

Take care, offandon!

[[No...]]

Hello. I think i was kindled by sporadic use of benzos while being in severe antidepressant protracted withdrawal. I had a hge setback in May, i dont know if it was from antibiotic use, the flu or benzo kindling but i developed a severe and frightening dizziness vertigo that has not abated as of yet.

 

I feel like im rocking up down left and right internally, like im on a boat or trampoline. I feel extremely nauseous and sometimes i have vertigo for a day. Doctors cant find a cause. So i atribute it to being in w/d or kindling.

 

Ive seen some people having it for years. Makes me very scared. This symptom is exceptionally severe for 8 weeks on end now together with internal vibrations tremors and massive Dr dp and visual distortions.

 

DOES IT GET BETTER? Im really worried im stuck in this hell forever

[[La...]]

Hello. I think i was kindled by sporadic use of benzos while being in severe antidepressant protracted withdrawal. I had a hge setback in May, i dont know if it was from antibiotic use, the flu or benzo kindling but i developed a severe and frightening dizziness vertigo that has not abated as of yet.

 

I feel like im rocking up down left and right internally, like im on a boat or trampoline. I feel extremely nauseous and sometimes i have vertigo for a day. Doctors cant find a cause. So i atribute it to being in w/d or kindling.

 

Ive seen some people having it for years. Makes me very scared. This symptom is exceptionally severe for 8 weeks on end now together with internal vibrations tremors and massive Dr dp and visual distortions.

 

DOES IT GET BETTER? Im really worried im stuck in this hell forever

 

Hi NoMeaning,

I'm so sorry you're going through this too. What you're describing are pretty classic symptoms for benzo and antidepressant withdrawal, so you're in good company here. You mentioned that doctors haven't found any other cause, so I assume that means that you've done some sort of testing. Is that  the case? What type? Did the doctors you saw say anything at all?

 

The main thing is to try to stay mobile and strong, if you can. If you can do any walking (with a cane or walker, for instance), bed or chair exercises, treadmill or exercises bike, etc., then that's a good thing. Other than that, distraction is a good thing to help you get through it. I tend to do a lot of that.

 

Everyone's different, so for some, it passes quickly, and for others, it can take longer. To my knowledge, there's no way to predict. If you're off the medications, or getting off the medications, then you're doing the best thing you can in order to allow your brain to heal.

 

 

[[Bi...]]

 

Hello BigSky!

Thanks for jumping in here and sharing your story. A couple of things came to mind for me as I read your story, so I'll just take them one by one.

 

First of all, I wanted to mention that benzodiazepines are known in the medical literature as "vestibular suppressants", meaning they interfere with the process of vestibular compensation or normalization. So, the fact that you're still taking a benzo means that you might experience dizziness. It's just part of the side effect profile of this family of medications. As well, withdrawing from benzos can cause dizziness, so it's all par for the course. So, as long as you're on a benzo and even after you get off, you may experience dizziness. I know it sucks, but it's a fact.

 

Also, the vestibular system involves the activity of a number of different neurotransmitters, including GABA, serotonin and a number of others. This PubMed abstract briefly explains it:

 

https://www.ncbi.nlm.nih.gov/pubmed/27638061 

 

So, any medication that affects neurotransmitters involved in the vestibular system can postentially cause dizziness. That list includes , benzodiazepines, Z-drugs, antidepressants, antipsychotics and other psychiatric medications.

 

Antibiotics, too, can affect balance, and you mentioned that you had to take one for a period of time for that ear infection.

 

I would definitely agree that further testing would be a good idea, just to ensure that you're not missing anything. When I became dizzy, I had a lot of testing, including vision, hearing/balance, neurological, CAT scan, etc. It helped to eliminate possible causes of dizziness.

 

I was wondering about the multiple dosing of diazepam/Valium. It has a long half-life, so it doesn't really need to be dosed multipe times during a day. It stays in the system for a very long time, which is why Dr. Ashton suggested it as a taper medication. One would not get the ups and downs that might come with other, shorter-acting meds. Did someone advise you to do your taper that way? I don't want to cross other advice you might have had, and I'm no expert on these things, but it does strike me as a possible reason for difficulty in your situation. The Ashton Manual has a number of charts that give ideas about tapering, which you might want to check out (i.e. if you haven't already).

 

It sounds like you had some vestibular rehabilitation therapy, and it was somewhat helpful. Are you continuing to do that? What does the therapist say about your situation? Is s/he knowledgeable about benzos and antidepressants?

 

Okay, so I think I'll leave it there and wait to hear back from you. In the first few pages of this (very long)thread, there are some links and references that might be helpful. But I've also posted info that I've come across along the way.

 

Take care, BigSky, and hang in there!

 

 

Hopefully editing it will keep this from being so large. Thanks for responding Lapis. Thanks to this site I have read Ashton's website. She talks about doing three doses during the day. I found this still led to what I believe was inter-dose withdrawal so I split it into four. I also found taking a large dose all at one time made me way too foggy to function. I still experience what I feel like is inter-dose withdrawal. Maybe I metabolize it quicker or it is psychological. I don't know. But doing it this way has worked for me so far.

 

I do know that benzos can cause dizziness. And until this severe episode started a few months ago I was fine dealing with it until it lessened enough to do normal things then do my next decrease. Through research on this side and others I did find out that it impacts the vestibular system. Which makes the doctors job and the PTs job that much more difficult, I have been up front with them about my current journey to get off benzos.

 

I am just at the point that I need to do these tests to confirm it is nothing other than the benzos and then figure out how I get through that. Even at the worst prior to this summer it was never this bad and never this long. Even though it was a low dose maybe the combination of stopping the amitriptyline and lowering my V was just too much. I have read on other forums about folks coming off amitriptyline having dizzy issues for months, among others so I don't doubt that may have made things worse. I was on such a low dose I didn't think it would be a big impact or I would have waited until after I was done with the benzo. I talked to my mental health dr and she didn't think it was a good idea to go back on the amitriptyline. I don't really want to either, I was just grasping at straws. The dizzy/light-headedness just hit me so hard and fast I just couldn't fathom it doing that after nothing like that tapering for months.

 

If I could just get back to the level I was at a year ago I would be thrilled. Then at least I had periods where I could do fun things. At this point I'm just dizzy about every waking moment with bouts of more intense. Also to give a scale I would say prior to this the dizzy would be a 3-4, during the worst of this it was a 9-10. Now I am pretty much at a constant 5-7.

 

I am going to continue to see the PT as it can't hurt and has taught me things that might help me going forward cope with less severe dizziness during this process. He seems to be pretty knowledgeable about benzo side effects which is good.

 

Of course the delayed nature and non-linear nature of benzo tapering makes this that much harder to figure out how to best limit the symptoms or what changes in dose timing or how it is distributed would do.

 

Thanks.

[[Bi...]]

So I have read a number of pages in this group, but I have not been able to get through them all. This is going to be a pretty long post but I am just beyond frustrated and worn down. I'm mostly just looking for thoughts, suggestions, hope and maybe some reassurance I guess.

 

I'm in month 16 of my taper after being a many different benzos for almost a decade with periods off and on. During this taper my most lingering symptom has always been dizzy/lightheaded feeling. It would usually start a week or so after a decrease then start to to get better in week 3-4. I would hold there for a week then make another decrease. I originally crossed over from K to 20mg V. That was too much and I quick dropped it to 16mg. I dose 4x a day to try to keep it level. I was also on a very lose dose of amitriptyline. 10mg. I tapered that and my last dose was around March/April. That may or may not be relevant later. Since it really isn't in my signature i don't think I went from 16mg V to 6.5mg V in the space of about 10 months.

 

In Jan/Feb I got a really severe ear infection in one ear and a little in the other. Hearing was way off based on visit to ENT. They put me on antibiotics. Cleared up the ear infection but I still didn't feel as good as I did before. For months I continued to have hearing loss, fullness and severe ringing. I started to see the ENT. They thought I might need tubes to clear it up so they cut my drum but didn't find anything to warrant a tube. Put me on steroids. Those were no fun to say the least.

 

I made my last decrease(.5mg) to 6.5mg May 2nd. Come May/June the ear problems seemed to have mostly cleared up, still occasional fullness and hearing issues. The dizzy never went away and in late June/July it got so severe that I no longer felt safe driving and stopped going in to work. Thankfully I was able to work from home. But it was so bad I coudln't go anywhere or do anything beyond just barely care for myself. It was a feeling beyond dizzy. Hard to explain but if anyone else might understand it some of you might. I got in to see the ENT and told him something is wrong. They did the VNT test and found only a slight nystagmus.The audiologist was not pleased with me that I had not followed the directions to not take any benzo for two days prior. But frankly I didn't feel like I was in a place to even attempt that. They referred me to PT. This seemed to help but I couldn't live like that and to hedge my bets corrected my dose back to 8mg from 6.5mg V at the same time. If I could have done separately I would but again I needed to go to work to support my wife and kid. Fairly quickly I was able to go back to work and function somewhat better. However the symptoms are still present and I have terrible days where I barely function. For months now I have just been winging it at work and my productivity is nowhere near where it should be and needs to be. Thankfully I work at a company where it is pretty difficult to get fired. 

 

I started googling and it seems like it is possible for benzos to cause a nystagmus? My biggest problems seem to be movement, if I try to follow vehicles as they drive by with my eyes only, or focus on a moving object it gets very intense. I can feel the symptoms coming on rapidly. This also happens with quick movements of my head. I also sometimes feel like my eyes are not focusing on the same thing or are not functioning in sync if that makes sense. Sometimes reading especially on a computer screen gets difficult mostly when the symptoms are already amped up. I can't do crowded events like the zoo etc. My memory has gone to hell, I forget things almost instantly and I can't remained focused for any length of time. I just feel like I am in a fog all the time. I feel less steady than I should most of the time as well.

 

I am at the point where I met the deductible for my stupidly high deductible plan and my plan is to push the ENT to send me to neuro and for an MRI. My PT who is great doesn't think they will find anything based on his experience but understands I need to rule it out and there is no better time than before the end of the year and my deductible resets. I seem to have hit a plateau as far as improving.

 

I guess if you made it this far in my novel, has anyone else had issues even similar to mine? What helped, what didn't? I'm really stretching for anything at this point because after so many months like this I just am worn down and getting pretty down. It is really affecting me work-wise but more importantly marriage/family wise. I don't see much light at the end anymore after what I had thought was a taper that was going pretty well. I'm not happy I had to correct my dose but I know I had to. But did I not go far enough? I know the standard answer is I went faster than my body could handle and I can accept that, but only after I have exhausted every other option because I don't want to do this for years on end. I have now been back at 8mg for about 3ish months.

 

 

I’m sorry you’re having these issues too. Sounds like benzo w/d but after reading up on persistent perceptual postural dizziness and how it’s often relieved with anti depressants .... which seems to correlate for me.... it could also be the amitryptiline (sp?) taper is contributing? Not sure if yours is like mine just throwing it out there. Hang on. I know we will get to the bottom of this. Been a rough night for me as well.

 

Thanks for the reply. Sorry you are dealing with bad symptoms as well. I have wondered if an antidepressant might help but I really don't want to get on another drug I just have to get off of at a later date. My mental health Dr. also is reluctant to prescribe one and I'm not wanting to so not pushing it.

[[La...]]

There are so many variables that it makes it hard to pinpoint one thing or another. My symptoms are quite variable too, e.g. two 8s in a row, then today is a 6. I don't do anything particularly different from day to day, so I really think there are many unknowns here. It's not linear, that's for sure.

 

Awhile back, I was talking to Baylissa Frederick, and in her experience, some people have a very quick turn-around from symptomatic to non-symptomatic. For others, there's a gradual change. She didn't have any sort of explanation for that, but I appreciated hearing that. It confirmed how strange the patterns can be.

 

I'm glad the tapering schedule is working for you, BigSky. I followed one of Ashton's charts and was pretty happy for the guidance at the time. I was quite alone -- not on BB -- and I just plowed on through, reducing my dose every two weeks as per the schedule. It was fine, actually. I had an every-other-day pattern of good day/bad day, but I stayed hopeful because of those good days. For me, it was the second withdrawal (from Prozac) that knocked my symptoms out of the park. I had to get off it, though. I just didn't want to be taking anything that could make me dizzy anymore.

 

I'm glad you've got that PT in your corner, BigSky. That can make a big difference.

[[No...]]

Is there anyone who had this dizziness for a long time and it went away? Im really really scared seeing so many having it for years i cant even handle it for 5 months and its really making me feel suicidal does it atleast get better?

 

Doctors are clueless they said i have a virus but i know its not. I feel its nervous system related. Other people mention MDds, that disorder never goes away.

 

Ive been in contact with another member on another side she said hers is still continuing 12 years off. Im freaking out and im really scared

 

Also i need to take a short flight of 95 minutes next week and im really terrified. Anyone fly in this condition? Its either that or road travel for 19 hours

[[La...]]

Is there anyone who had this dizziness for a long time and it went away? Im really really scared seeing so many having it for years i cant even handle it for 5 months and its really making me feel suicidal does it atleast get better?

 

Doctors are clueless they said i have a virus but i know its not. I feel its nervous system related. Other people mention MDds, that disorder never goes away.

 

Ive been in contact with another member on another side she said hers is still continuing 12 years off. Im freaking out and im really scared

 

Also i need to take a short flight of 95 minutes next week and im really terrified. Anyone fly in this condition? Its either that or road travel for 19 hours

 

Hi NoMeaning,

I understand your fears. We all have them. But remember that you've only been off the medication for a few weeks, and you need to give your body time. The only way any of us can get through this is a day at a time, and logically, each day we're off the medication is a day closer to getting well.

 

As far as statistics and facts go, it's really, really, REALLY hard for any of us here to have a handle on that. People come and go whenever they feel like it on BB, and they don't necessarily come back and say, "Hey, I'm better now!" They just go off and live their lives. So, keep that in mind. The Success Stories provide the best evidence of hope and healing, so I like to go there when I need a hit of positivity. Do you ever read them? They really are gifts from those who have moved ahead with their lives and who have taken the time to share their experiences with the rest of us. Obviously, many others don't take the time to do that, so their healing stories are lost to us. It's really a shame.

 

Have you considered talking to someone like Baylissa Frederick? She has a website and does phone counselling, and she's been through all of this, including dizziness. It's gone now, and she dedicates her time to helping others (many thousands by now, I believe). Perhaps she could provide you with some extra reassurance and info.

 

On the issue of Mal de Debarquement Syndrome, the research is in its infancy, it seems. I've recently read four different papers that show how little is currently known but also show that there's interest in doing further research on the underlying mechanisms. Thus far, they refer to two different types but can't even say if they're related or not. Very early days, it seems.

 

That person with dizziness that has lasted for 12 years...Do you know all the details of her story? What she took? For how long? Any other health issues or medications? It's easy to scare oneself based on the stories of others, but not everyone gives the whole picture online.

 

Anyway, this a long-winded way of saying it's important to stay calm, if you can, and just don't look too far ahead. None of us knows the future and can predict things. Just breathe, do your best, stay mobile, distract a bit and try to believe in the body's ability to heal, given the opportunity (i.e. without dizziness-inducing meds).

 

Take good care, okay? Hang in there.

[[No...]]

Thanks for replying. I will contact her thanks for the info.

 

Yeah im 6 years off antidepressants, i had a brutal protracted withdrawal thats srill continuing. I took benzos sporadically so i dont know if i had kindling or not or if it had any impact. But i had a setback in may as ive explained. Dont know what caused what to be honest. The rocking started severely in May.

 

I just know that lady took paxil for a few years and ct 12 years ago. I doubt she took any other meds and i sadly dont know the full picture besides what ive read online, she said she hasnt taken anything in 12 years.

 

Do you think ill be okay flying though. Im really scared

[[La...]]

Hi NoMeaning,

So, I, too, took antidepressants as well as benzos, and of course, those two meds both carry dizziness as a possible side effect or withdrawal effect, and it would be impossible to decipher what role each one played. I guess it doesn't matter so much now anyway. What's important is that you've done the hard work of getting off everything, and you have to be hopeful that your amazing neuroplastic brain can find its way back to normalcy.

 

Have you heard of Dr. Norman Doidge, the author of a couple of books about neuroplasticity. The first one was called "The Brain That Changes Itself," and the very first chapter is about a woman who became dizzy as a result of taking an antibiotic that completely knocked out her vestibular system (in an objectively measurable way, too). She got better, as did all of the people in the book, based on the brain's ability to heal and be "plastic".

 

I wish I could give you info about flying, but I don't know much. The only thing I'd say is to be as positive as you can. You're not taking another chemical into your body by flying. You're just changing the pressure in your ears a bit for awhile. Millions of people travel every day and don't have anything bad happen afterwards, so there's no reason to think that you will. I remember another BB needed to take a train trip, and he was quite nervous beforehand, but in the end, he was fine. He got to go to a cool conference too, so there was the bonus of enjoying the destination! Try to psych yourself up in whatever positive way you can.

 

I'm sorry to hear about the woman who took Paxil. Again, we just don't have the full picture there, and I can't hang my hat on loose info like that. Does she smoke (cigarettes or weed) or drink any alcohol? Are there hormonal issues? The most recent MdDS info is paying attention not only to hormonal issues, but also to GABA and Gene-Related Peptides, which I hadn't heard of before I read this study:

 

https://www.researchgate.net/publication/327290256_A_New_Theory_on_GABA_and_Calcitonin_Gene-Related_Peptide_Involvement_in_MdDS_Predisposition_Factors_and_Pathophysiology 

 

Suffice to say, there are still many unknowns. For now, I think it's best to read Success Stories, and yes, talk to someone like Baylissa who has experience and knowledge in this field. She was just as dizzy as the rest of us, and she's no longer so. You might want to read her book, since it's quite hopeful. She's a very positive role model for the rest of us.

 

:)

 

 

[[Bi...]]

Thanks lapis. I too have found no real correlation as to when I have good and bad days. Other than I will say not getting much sleep always seems to lead to a bad day. Beyond that I think caffeine and chocolate cause me to have a worse day. Today was better than yesterday. Hoping that continues. I had stopped doing some of the earlier PT exercises to focus on new ones but have since started them back up. Unknown if that is helping but can't hurt. Just lame I spend 30 mins a day doing these exercises. But if they help it is worth it.

 

I think the most frustrating part is the unpredictability and nonlinear healing. If I had a time table or steady predictable healing it would be easier to keep hope and not get down. I hate not being able to plan and say this day will be this. I have always just had a thing about knowing when something will be over. And I don't get that with this and it drives me crazy.

[[La...]]

Hey BigSky,

I totally agree. It's really, REALLY difficult to deal with the inconsistencies and unknowns of this roller-coaster ride. I've been charting my dizziness levels for a long time to see if there might be any patterns, but it's hard to see any. I tend to get that every-other-day pattern, but not always.

 

Anyway, if you've identified some things that you know make things worse for you (coffee, chocolate), the it certainly makes sense to minimize your intake in order to see if you feel better. Sleep is obviously a major help, if you can get it, but of course, benzos interfere with the depth of sleep too, so there's another catch-22 there.

 

What's your plan, at this point? Will you keep holding, or are you planning to keep going with your taper?

[[No...]]

I believe MDds is the same disorder as Pppd and all rocking and swaying symptoms are from the same biological problem, its just which label you choose to believe.

 

It is caused by hyperstimulation of the CNS, you experience the sensation, get scared, the fear response triggers more symptoms and you obsessively monitor the dizziness like a hawk. This creates neural pathways to stay in this dizziness because of this cyclw. Thats why some peoples symptoms persist.

 

There is a way out though. Ive spoken to someone who cured herself with CBT, Claire weekes methods and relaxation. Took 18 months though.

 

Worth looking into