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

[[Go...]]

My apologies if I am interrupting a conversation, or if the answer has recently appeared on this page. I've been trying to read from the beginning of the comments to get caught up with all of you, but it is going to take me awhile.

 

In the meantime, I keep having these waves of vertigo or imbalance sometimes lasting for days before they begin to ease a bit. So I'm wondering if anyone has suggestions for coping with the "dizziness" while it's happening. I am trying to spend time slowly walking a straight line forward and back to give my brain some practice with healing. I've started practicing Tai Chi as well. (Something I used to practice but for some reason have not been very disciplined about in recent years.) Those two things should give me some practice with getting my balance.

 

Any other suggestions or links?

 

I will keep on reading the earlier comments from the beginning of this thread as I'm sure there will be helpful information. But I could use some quick ideas for right now.

 

Thanks.

[[La...]]

Hi GGB,

No need to apologize! It's an open conversation around here!

 

I just read your post, and I'd have to say that I think you're definitely on the right track by keeping mobile. I think it's the best thing we can do under the circumstances. Whatever you can do that's safe and comfortable that can keep you mobile, strong and flexible is a good thing. Dizziness can do a number on the muscles, since we spend a certain amount of energy trying not to fall. But if you can walk -- even using a cane or walker -- and do exercises (in sitting, lying or standing), etc., then at least you can maintain circulation, bone density, function, etc.

 

I've already had a fracture, and it was noted that my bone density isn't good. I maintain a schedule of walking at certain intervals during  the day, and I do exercises too. It's absolutely necessary.

 

Anyway, keep it up, and I hope the rest of your taper goes well!

[[Go...]]

Thanks, Lapis.

 

So I'll keep doing what I'm doing. I did see a mention of some kind of vestibular retraining (?) So I will google that and see if there are any other particular exercises that would help.

 

I am finding that when I am feeling vertigo or imbalance I seem to be able to tolerate it more if I am moving than if I am sitting or lying down. Maybe it's like with tinnitus: if I listen to sounds that match my tinnitus (crickets, etc.) it doesn't drive me as crazy as when I try to sit in silence and can't escape the "sound" in my ears. Maybe when I am moving it makes more sense in my brain that I should be having balance problems and it doesn't make it seem as crazy...

[[Bi...]]

Thanks, Lapis.

 

So I'll keep doing what I'm doing. I did see a mention of some kind of vestibular retraining (?) So I will google that and see if there are any other particular exercises that would help.

 

I am finding that when I am feeling vertigo or imbalance I seem to be able to tolerate it more if I am moving than if I am sitting or lying down. Maybe it's like with tinnitus: if I listen to sounds that match my tinnitus (crickets, etc.) it doesn't drive me as crazy as when I try to sit in silence and can't escape the "sound" in my ears. Maybe when I am moving it makes more sense in my brain that I should be having balance problems and it doesn't make it seem as crazy...

 

I too sometimes feel better when moving in the car, but not everytime. I also have horrible tinnitus when I don't have other sound, especially at night.

[[Bi...]]

Hi BigSky,

Thanks for explaining everything, and please know that everyone who is dealing with this symptom -- or any of the symptoms, for that matter -- wants to have clarity and logic and to be able to plan. But that's just it. We can't control the symptoms. There isn't necessarily any logic to why things are better or worse on a given day. I think the Ashton Manual addresses this to some degree, but the fact is that the medication can be problematic in any dose, and the best thing we can do is to get off it via a controlled taper and then allow the body to heal over time. For some, the time will be shorter, and for others, it will be longer. Again, there doesn't seem to be any rhyme or reason as to who gets hit with worse symptoms.

 

If you're not able to work, then yes, it does make sense to have a good discussion with your doctor about it and see how s/he can support you. Do you have short- or long-term disability where you work?

 

I'm so, so sorry you're going through this. Like you, we're all wondering what the hell happened and how we can get our lives back to normal as soon as possible. It's really, really, REALLY hard to deal with all of this. Again, the best thing I can suggest is that you focus on the next steps to get you off the medication so that you can heal. Staying on the medication -- or increasing it -- doesn't seem to help.

 

I, too, was on the medication for quite awhile without any dizziness. But once it started, and once I had everything checked out, and once I finally understood that I didn't have a tumour or any other strange disease, I realized I had to get off the medication. I just couldn't see any other way to allow my brain to heal. It was a case of too much medication for too long.

 

What about you, BigSky? What do you think?

 

I do have short term up to 6mo disability. But no long term. i have been doing everything I can to avoid taking that because I don't want to have that on my record if you will at work. But I'm getting closer to potentially not having any other options. The office where I go to see my mental health Dr. does not like to provide paperwork for disability as their mission is to help people continue their lives and not have to go on disability. Which I completely get, the point of going to these Drs is to get better, unfortunately sometimes that means taking time off work. So I am a little worried about how that conversation is going to go. At this point I have had all the tests from the ENT to neuro and MRIs(that was 1:20s of hell being stuck in that machine. Everything comes back normal so I know it is the benzos.

 

I have thought about continuing the taper if I am going to continue to feel this terrible. I'm torn, because like I said before it seems like every decision I make doesn't work out the way I think or would like it to. Ultimately the goal of course is to be off this hellish drug but I had wanted and still want to be able to live my life. Maybe that means continuing the taper on valium, or maybe that means trying a different benzo to taper. I plan to call my local pharmacy and see if they will tell me if they carry liquid valium in the 1mg/1ml formula, and or if they carry librium which is the only benzo I have not tried at this point. I don't know which is the better option. I'm concerned as well about crossing over to the liquid as I have not tolerated valium by other manufacturers. I know the work thing puts added stress on me, which doesn't help the healing process. I also know I need to be more diligent about dietary things. Making progress again to get off this though would help boost my mental state. I'm just worried at what cost in symptoms.

 

As I was talking the other night with my wife it kind of dawned on me that this is the second time and maybe the third time I have tried to discontinue use of a benzo. Neither of those times did I know what I was doing nor did the Drs clearly. So I'm kind of worried at this point that it is going to continue to be more difficult than is should be just because I have messed up at least once if not twice before.

 

I finally sat down and calculated by month what my decreases were. Hopefully this will paste ok. Initially it starts of rocky as I crossed over from klonopin and the equivalent dose of valium according to ashton made me beyond out of it so I quickly reduced it significantly.  Some months may have included smaller cuts like Dec-Jan but for ease I just did it based on what was I taking the first of the month. Also in that Feb-Apr period I had a nasty ear infection that required steroids and antibiotics which is what prompted the increase.

 

July 20

Aug 12 -40.0%

Sep 14 16.7%

Oct 12 -14.3%

Nov 11 -8.3%

Dec 10 -9.1%

Jan 8 -20.0%

Feb 7.5 -6.3%

Mar 6.5 -13.3%

Apr 7 7.7%

May 7 0

June 6.5 -7.1%

July 6.5    0

Aug-Mar 8mg

[[La...]]

Thanks, Lapis.

 

So I'll keep doing what I'm doing. I did see a mention of some kind of vestibular retraining (?) So I will google that and see if there are any other particular exercises that would help.

 

I am finding that when I am feeling vertigo or imbalance I seem to be able to tolerate it more if I am moving than if I am sitting or lying down. Maybe it's like with tinnitus: if I listen to sounds that match my tinnitus (crickets, etc.) it doesn't drive me as crazy as when I try to sit in silence and can't escape the "sound" in my ears. Maybe when I am moving it makes more sense in my brain that I should be having balance problems and it doesn't make it seem as crazy...

 

Hi GGB,

With regards to vestibular rehabilitation exercises, it's best to consult with someone who has expertise in that area. They would have to do vestibular testing in order to determine which exercises were most appropriate for your particular case. Then they would graduate and/or change them over time, depending on how you respond. I believe they can be very useful for some types of dizziness. I tried them for a very long time, but apparently, my type of dizziness did not respond. I do think others should check it out for themselves if they're interested. But it's not really the kind of thing that you can just pick up from the internet. Someone needs to ensure you're doing the right ones, and in the right way, and for the right number of repetitions, etc.

 

With regards to tinnitus, I do think that ignoring it is a good tactic. I have the radio going much of the day, so I don't pay attention to my left ear hissing. At night, when it's quiet, well....that's a different story. It does change volume, though, and there are times when it's quieter, thank goodness!

[[La...]]

Hi BigSky,

Just responding to your most recent post....

 

Thanks for the detailed info about your taper. Would it not be easier to just go down mg by mg with the Valium, or even .5 mg by .5 mg, as per the Ashton Manual. Or were you trying to do something else? I know there are other threads dedicated to such things. Is there a certain reason why you'd want to change benzos to Librium? Are there specific advantages with it?

 

I noticed you mentioned that the decisions you've made had not worked out the way you thought or wanted them to. But the fact is that there's a huge amount of unpredictability built into this whole process. We want and hope for a good, smooth, easy ride, but we can't actually control certain things. What if you just focus on the process of getting off the medication in a logical, step-by-step, forward-moving fashion? If you did opt for disability to get through it, then you'd have the time and space to just do the taper and allow yourself some healing time.

 

Again, I understand your frustration, but as I've read here on BB a number of times, people say "the only way out is through." You want to be well, you want to feel good, but the medication seems to preventing that. So you have to somehow get off it -- safely and slowly.

 

You also mentioned dietary stuff, but you didn't give details. Is there something you want to change in that area? Do you think it's part of the problem -- whatever it is that you're eating? I'm not sure if there are any hard and fast rules on this topic, but good nutrition makes sense on every level. Maybe making whatever changes you're thinking about will help you feel more stable too.

 

Anyway, I can tell you're in a tight spot, but I think you probably know what needs to be done. And if you've already tried to do this before, then I sincerely hope that this time, you'll be able to reach your goal of getting off.

 

 

[[Bi...]]

I was thinking of switching to see if the symptoms were better than on Valium. It seems to be the only other long lasting benzo even somewhat common There are downsides like it comes in caps instead of pills from what I have read. Staying on the Valium is certainly an option but thinking of moving to a micro taper to smooth it out more. I think I have given up on the hold at this point because I don't seem to be getting better.

[[La...]]

Hi BigSky,

Here's a tapering article from the Benzodiazepine Information Coalition that may be useful to you:

 

https://www.benzoinfo.com/2017/10/09/benzodiazepine-tapering-strategies-and-solutions/ 

 

 

[[Fp...]]

My dizziness left for about a week, but has sinced returned. Is this typical? Could it be a sign that Im healing? Is this a "wave"? Im 4.5 months off Ativan.

Thank you!

[[La...]]

Hi Fp1984,

That sounds great -- no dizziness for a week! Lovely! As far as whether or not it's typical, that's hard to say. I don't think there's a "typical" story around here, since everyone seems to have different patterns and experiences. I do hope it's a good sign for you. 

[[Bi...]]

My dizziness left for about a week, but has sinced returned. Is this typical? Could it be a sign that Im healing? Is this a "wave"? Im 4.5 months off Ativan.

Thank you!

 

Glad you had a window. I am quite jealous. Hopefully you get more frequent ones for longer periods.

[[Ko...]]

Hi Dizzy Buddies,

 

I don’t post often because I’ve been here for so long, but I wanted to give you an update. I’m been off Benzos for 5 and 1/2 years. The last three years I’ve mostly been suffering from boatiness or unbalance, not vertigo. Also, still have burning shins.  The last month has been different.  One night I couldn’t wake up,had pressure in my head, I felt paralyzed and had pain in my abdomen. This lasted for 18 hrs until I finally could sit up.  My friend took me to ER. They did CT scans of my head and abdomen. Of course they couldn’t find anything wrong. Gave me a prescription for pain which was OxyContin, needless to say I didn’t fill it.  By the time I got home I was almost back to normal except my boatiness was about a 9.  Then about 10 days later it happened again.  I was in bed for 24 hrs then it got better.  A few days ago it happened again. This time I had pain in both hips, plus head pressure.  After 24 hrs I was back to normal. I’m hoping that these episodes are my brain trying to make adjustments.  Also, My boatiness has changed, for couple of days when I would step it felt like the floor dropped, very weird.  Then yesterday, when I stepped it felt like I had springs on my feet, also weird. Today, back to normal boatiness.  It has improved some, I now can stand still without feeling off balance and when sitting I don’t have to rock. So that’s an improvement.  Have any of you experienced changes in your boatiness?

 

I’m sorry so many of you are suffering. I wish I’d win the lotto so I could finance a study to figure out how to help people trying to come off Benzos.  I read that medical schools now have a new specialty -

Addiction specialist. That’s good news because most doctors have no idea how to help us.

 

Hang in there everyone,

Korbe

[[La...]]

Hi Korbe,

Good to hear from you again! In answer to your question, yes, I've had a variety of sensations with the disequilibrium -- from the floor dropping out, to being pushed or pulled one way or another, to intense head squeezing, etc. But, my usual sensation is a watery, floaty, boaty type of disequilibrium. I still have intense lower body pain -- mostly in my feet and legs -- that goes along with not having control over my ability to move properly. It makes sense so I understand it, but I often find it unbearable. And like you, I don't want to take any strong medication for it. I haven't taken acetaminophen or an NSAID in a long time either, since, as we all know, medication comes with side effects. I'd prefer to avoid that as much as possible.

 

I think prevention is the most important thing with regards to this whole fiasco. I just wish I'd never taken any of these medications.

 

 

[[La...]]

Hi All,

I'm sharing a recent vestibular study that I just came across because I wanted others to see the language that's used in this particular piece of research. There's a word in the title -- "neurotic" -- that isn't defined in the body of the copy, and its use is highly questionable, in my opinion. What does it mean? It's not a biologically-measurable thing, yet whoever is conducting the study is judging certain people and slapping what appears to be a highly subjective label on them. This "trait" is then positively correlated with a type of dizziness. It's not scientific. It probably can't be replicated. How useful is it? I find the use of the term "neurotic" highly objectionable. I do wonder whether there's a cultural factor here in terms of language use. I really haven't heard the word "neurotic" in daily use around here (Canada).

 

I hope others will have a look and weigh in with their thoughts.

 

In any case, I do hope no one here has been labelled "neurotic", much less have that "personality trait" associated with his/her dizziness. Geez! Why not work on improving the testing so that, for instance, it can properly reflect what many of us are experiencing but have not had validated through the current, less-than-perfect vestibular testing? To me, it misses what's actually going on and serves as a cop-out from looking for that real reason.

 

 

2019 Mar 2. doi: 10.3233/VES-190653. [Epub ahead of print]

 

Brain responses to virtual reality visual motion stimulation are affected by neurotic personality traits in patients with persistent postural-perceptual dizziness.

 

Passamonti L1,2, Riccelli R3, Lacquaniti F4,5, Staab JP6, Indovina I4,7.

 

Author information

 

Abstract

 

OBJECTIVE:

 

Persistent postural perceptual dizziness (PPPD) is a common vestibular disorder of persistent dizziness and unsteadiness, exacerbated by upright posture, self-motion, and exposure to complex or moving visual stimuli. Previous functional magnetic resonance imaging (fMRI) studies found dysfunctional activity in the visual-vestibular cortices in patients with PPPD. Clinical studies showed that the anxiety-related personality traits of neuroticism and introversion may predispose individuals to PPPD. However, the effects of these traits on brain function in patients with PPPD versus healthy controls (HCs) have not been studied.

 

METHODS:

 

To investigate potential differential effects of neuroticism and introversion on functioning of their visuo-vestibular networks, 15 patients with PPPD and 15 HCs matched for demographics and motion sickness susceptibility underwent fMRI during virtual reality simulation of a rollercoaster ride in vertical and horizontal directions.

 

RESULTS:

 

Neuroticism positively correlated with activity in the inferior frontal gyrus (IFg), and enhanced connectivity between the IFg and occipital regions in patients with PPPD relative to HCs during vertical versus horizontal motion comparison.

 

CONCLUSIONS:

 

In patients with PPPD, neuroticism increased the activity and connectivity of neural networks that mediate attention to visual motion cues during vertical motion. This mechanism may mediate visual control of balance in neurotic patients with PPPD.

 

https://www.ncbi.nlm.nih.gov/pubmed/30856138

[[La...]]

Hi Everyone,

I haven't posted many studies like this one, but I thought others might be interested. It's about Gingko Biloba and vestibular compensation in rats. It's called "Ginkgo biloba Extract EGb 761 Improves Vestibular Compensation and Modulates Cerebral Vestibular Networks in the Rat".

 

Have a look here:

 

https://www.ncbi.nlm.nih.gov/pubmed/30858822

 

Abstract

 

Unilateral inner ear damage is followed by behavioral recovery due to central vestibular compensation. The dose-dependent therapeutic effect of Ginkgo biloba extract EGb 761 on vestibular compensation was investigated by behavioral testing and serial cerebral [18F]-Fluoro-desoxyglucose ([18F]-FDG)-μPET in a rat model of unilateral labyrinthectomy (UL). Five groups of 8 animals each were treated with EGb 761-supplemented food at doses of 75, 37.5 or 18.75 mg/kg body weight 6 weeks prior and 15 days post UL (groups A,B,C), control food prior and EGb 761-supplemented food (75 mg/kg) for 15 days post UL (group D), or control food throughout (group E). Plasma levels of EGb 761 components bilobalide, ginkgolide A and B were analyzed prior and 15 days post UL. Behavioral testing included clinical scoring of nystagmus, postural asymmetry, head roll tilt, body rotation during sensory perturbation and instrumental registration of mobility in an open field before and 1, 2, 3, 5, 7, 15 days after UL. Whole-brain [18F]-FDG-μPET was recorded before and 1, 3, 7, 15 days after UL. The EGb 761 group A (75 mg/kg prior/post UL) showed a significant reduction of nystagmus scores (day 3 post UL), of postural asymmetry (1, 3, 7 days post UL), and an increased mobility in the open field (day 7 post UL) as compared to controls (group E). Application of EGb 761 at doses of 37.5 and 18.75 mg/kg prior/post UL (groups B,C) resulted in faster recovery of postural asymmetry, but did not influence mobility relative to controls. Locomotor velocity increased with higher plasma levels of ginkgolide A and B. [18F]-FDG-μPET revealed a significant decrease of the regional cerebral glucose metabolism (rCGM) in the vestibular nuclei and cerebellum and an increase in the hippocampal formation with higher plasma levels of ginkgolides and bilobalide 1 and 3 days post UL. Decrease of rCGM in the vestibular nucleus area and increase in the hippocampal formation with higher plasma levels persisted until day 15 post UL. In conclusion, Ginkgo biloba extract EGb 761 improves vestibulo-ocular motor, vestibulo-spinal compensation, and mobility after UL. This rat study supports the translational approach to investigate EGb 761 at higher dosages for acceleration of vestibular compensation in acute vestibular loss.

 

Full Study:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6397839/

[[Bi...]]

I have been absent from here for awhile as nothing was really changing. I have been working from home almost exclusively as I cannot stand to go into the office. My symptoms just go off the charts when I go there or other places with lots of stimuli. I'm having to apply for an ADA work accommodation to see if they will let me continue that. If not my choices are FMLA with no pay or see if my Dr. will work with me on short term disability. None of my options are great but continuing to work is far better than the other two.

 

In other better news I received back the gene test when I met with my Dr today. I think it explains a lot of what why this has been so difficult for me. First a gene causes me to be more affected by benzos. Meaning 10mg of V to me could be like 14 or 16mg to someone without this gene. The exact amount is really not determinable but there is a difference in how much it takes my body to be the equivalent of someone else. Which to me also means that more damage is done to my system with the same amount. It always seemed I was more sensitive to these meds than others. This confirms a reason for that.

 

I also found out I metabolize valium and other similar benzos at a fast rate. This explains why I had to dose four times a day and that still didn't seem like it was always frequent enough. I always wondered why I was like that when people were talking about taking one dose at night of the same dosage I was splitting into four.

 

Apparently Klonopin is different than those type of benzos and isn't impacted as far as they know by these genes. So I am switching back over to that and plan to daily micro taper it. The hard part is figuring out the correct dose to cross back over at. Due to the in between dose of Valium I am currently on but also due to all those other factors impacting how my body processed the valium. I don't want to cross over higher than where I am now but I also don't want to go too low and cause all kind of havoc. If I have to ere on one side it would be to the slight increase in overall dose than too low. So over the next few weeks I am going to exchange out one of my four doses every 4-5 days and see how that goes. I was prescribed 1mg K a day which by my calculations is the equivalent of 20mg V. The equivalency for me has never been exact. I don't think I'm going to take the whole doseage, I'm going to try taking .125mg(4x day) which should be the equivalent of 2.5mg V which would put me at a total of 10mg vs the 8 I am currently on. I don't have the scale yet to measure things out in a finer manner. I should have that before I fully finish the cross over so maybe I can make adjustments if everything is going well and even it out at the equivalent of 8.

 

Wish me luck. I'm excited that we have a new plan and have some "data" to support it instead of wild guessing. But also nervous. On one final note the gene testing also provided suggestions on what AD meds should work best if I wanted to try those again or felt I needed to. At this time I want no other medication. Unsurprisingly amitriptyline was in the not processed well by my body category. So many things in this long process I wish I would have done sooner. Lessons learned at a very high cost.

[[Sa...]]

BigSky,

 

Interesting.  What kind of doc did this testing for you?  May you be extremely successful with the taper with little to no withdrawal symptoms.  I hope you keep us posted.

 

SS

[[Bi...]]

BigSky,

 

Interesting.  What kind of doc did this testing for you?  May you be extremely successful with the taper with little to no withdrawal symptoms.  I hope you keep us posted.

 

SS

 

A RN at the mental health office I go to ordered it. The company that does the testing is genesight. I came across it in a few posts here on bb so figured I would give it a shot. It isn't cheap in my opinion but I think the information was worth it for me.

[[La...]]

Interesting, BigSky! GeneSight is the company that is working with the Centre for Addiction and Mental Health in Toronto (CAMH) to do a long-term study in pharmacogenetics re: psychiatric meds. I think the study is still in progress.

 

http://impact.camhx.ca/en/home.php

[[Ki...]]

My dad is 78 yrs old and is on clonazepam.5mgs since 5yrs

He is feeling very sick off and on.

What shud we do

Very desperate.

Pls help

[[La...]]

My dad is 78 yrs old and is on clonazepam.5mgs since 5yrs

He is feeling very sick off and on.

What shud we do

Very desperate.

Pls help

 

Hi Kirkhero,

So sorry to hear about your dad. Did you just find out that he was on clonazepam recently? You said he's been on it for five years already. If he's 78, I would VERY carefully consider what to do. Talk to the prescribing doctor. Talk to the pharmacist. Talk to any other medical professionals involved in his care. Have a discussion as a family.

 

In some cases, it may make more sense for someone to stay on the medication, but perhaps, a less strong kind and at a lower dose. Why was he put on it in the first place?

 

You can also put your question out on other areas of BB. Remember, this is the Dizziness Group thread, so you're only reaching a small group by asking your question here.

[[Ki...]]

Thank u so much lapis

How do I post in the other groups as I am not a new member

Feel so bad seeing him suffer like the way I did

He was put on it as he cud not sleep.

I am better but still quite dizzy on somedays

Cant walk much as head getss heavy

[[La...]]

Hi Kirkhero,

You would need to click on "Home" above, and then look at the other sections of BB, and then post your question where it fits best. That is, you'd have to start a new thread. Read the descriptions of the sections and see what you think.

[[La...]]

Kirkhero,

What does your dad want to do and what does he say about this issue? It's his body and his life. Does he want to go off the medication? Is he aware of the various issues and risks -- both with staying on the medication and with going off it?