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

[[La...]]

Hi bonty,

All of those things are on the list of possible withdrawal symptoms. However, they can be caused by other things too. If you're not sure what's up and you feel it would be good to get things checked out, then please do. I had everything checked out early on because I had no idea what was going on. Once certain things were eliminated as possible causes, things became more clear for me.

Thank you Lapis2, I do know its wd because unfortunately, I had a not called for wd, from  a ssri wd from not tapering and quick chances, never thought I would experience yet another wd ...but sxs are more intense now, i'm just worried when it will resolve and of course not able to reduce or do much not alot of energy, still dealing  accepting this nightmare. Its hard when nobody understands ...

 

Hi bonty,

I'm not quite sure from your signature where you are on your road to healing. Are you tapering numerous things at once? What are you currently taking?

 

I think we all share the fears about how and when this whole thing will resolve. That goes with the territory, and unfortunately, there's no answer to that. Everyone is different. For some, it goes quickly, and for others, it takes longer.

[[Da...]]

Hi Lapis,

 

I have a complex withdrawal scenario for a friend and I wonder what your opinion is? The person developed vertigo on the Z-drug Zopiclone and needs to withdraw. Normally they would switch to diazepam to make the withdrawal easier, but I worry that the long acting drug will make the vestibular problems worse. What do you think? Have you come across any research that might help? The vertigo is already quite disabling.

[[La...]]

Hi Data_Guy,

That's an excellent question and I wonder the same thing myself! Depending on what you read, some people suggest there's no need to do a switchover, while the Ashton Manual suggests it might be helpful to do so. Here's my layperson's opinion: Try to withdraw from the drug you're already on. If that's problematic, then perhaps, a switchover might help make the withdrawal easier.

 

I couldn't withdraw from clonazepam without getting horrific muscle spasms and panic attacks. Diazepam gave me a much, much smoother ride. But then again....I'm still dizzy. There's no way of knowing whether it would have been different had I gone a different route. I wasn't on BB at the time, and I just did the best I could under the circumstances.

 

As far as vestibular issues go, ALL of these medications (as well as many, many others) can make people dizzy (e.g. vertigo, disequilibrium, light-headed, etc.). Genetics play a role in how we metabolize medications, so that means we're all different. It's a crap-shoot, I think.

 

What do you think, Data_Guy? In your travels around BB, have you come across anything that suggests one way is better than another? Maybe a micro-taper? I just didn't know about any methods other than Ashton's at the time I got off. But I was on another medication too, so that undoubtedly complicated my situation.

[[bo...]]

Hi bonty,

All of those things are on the list of possible withdrawal symptoms. However, they can be caused by other things too. If you're not sure what's up and you feel it would be good to get things checked out, then please do. I had everything checked out early on because I had no idea what was going on. Once certain things were eliminated as possible causes, things became more clear for me.

Thank you Lapis2, I do know its wd because unfortunately, I had a not called for wd, from  a ssri wd from not tapering and quick chances, never thought I would experience yet another wd ...but sxs are more intense now, i'm just worried when it will resolve and of course not able to reduce or do much not alot of energy, still dealing  accepting this nightmare. Its hard when nobody understands ...

 

Hi bonty,

I'm not quite sure from your signature where you are on your road to healing. Are you tapering numerous things at once? What are you currently taking?

 

I think we all share the fears about how and when this whole thing will resolve. That goes with the territory, and unfortunately, there's no answer to that. Everyone is different. For some, it goes quickly, and for others, it takes longer.

I'm only tapering K and take 5mg celexa, My blood pressure feels low and im so  fatigued can't do much... the other drugs in my sig. have the dates in,  but paxil was not tapered and prozac hardly in  had ssri wd from that...

[[Da...]]

Thanks for the answer, Lapis. Your course of action makes sense. I really don't know which is better, I'm going to have to look into it. Maybe I will see if some drugs are stronger vestibular suppressants than others and what factors dominate when it comes to interfering with the vestibular system (is it primarily hypnotic properties? Anxiolytic? Muscle relaxant?) I might start by seeing what drugs are most frequently reported to be involved in cases of dizziness (I hope there is an easy way to do this, otherwise it may be impossible!).

 

I've written the deprescribing movement at Bruyere to see if I could finagle an opinion out of them. I figure most doctors do not even know how to properly taper a drug, so in this case they would be clueless, but this is a group who may have seen something like this and looked at some relevant literature.

[[La...]]

Thanks for the answer, Lapis. Your course of action makes sense. I really don't know which is better, I'm going to have to look into it. Maybe I will see if some drugs are stronger vestibular suppressants than others and what factors dominate when it comes to interfering with the vestibular system (is it primarily hypnotic properties? Anxiolytic? Muscle relaxant?) I might start by seeing what drugs are most frequently reported to be involved in cases of dizziness (I hope there is an easy way to do this, otherwise it may be impossible!).

 

I've written the deprescribing movement at Bruyere to see if I could finagle an opinion out of them. I figure most doctors do not even know how to properly taper a drug, so in this case they would be clueless, but this is a group who may have seen something like this and looked at some relevant literature.

 

One major thing I've learned is that there are at least 8 neurotransmitters involved in the vestibular system, so any medication that affects neurotransmitters could potentially affect balance. I would guess that the genetic component could be a big factor, e.g. is one a fast or slow metabolizer of a given drug?, what else is one taking that might affect metabolization?, kidney or liver issues, hormonal issues/changes, male/female, etc. I'd love to hear about any new info on this, but I would guess that there's a lot that's unknown.

 

In my case, I became dizzy while on the medication and it took two years of medical testing and appointments to figure out what the heck was going on. In other cases, if someone becomes dizzy, they might clue into what's going on much, much faster than I did. So, my taper didn't start until two years after my dizziness started. That likely played a big role.

 

One medical journal article I found early on mentioned that certain medications suppress specific parts of the vestibular system. It looked at different types of meds (a benzo plus a few others -- will try to find it). In that paper, lorazepam (the chosen benzo for that paper) suppressed the utricle (one of the otolith organs in the ear) and the lateral vestibular nucleus, so that has stuck with me all this time. It was a paper about astronauts who had vestibular issues due to space travel. Interesting stuff, but I haven't seen another paper on it.

 

I do wonder about long-acting benzos and whether they're more problematic. I took clonazepam and lorazepam, then switched over to diazepam for my taper. That's a lot of long-acting benzos! Maybe a medium-acting benzo would be better, such as...I'm not quite sure.

 

Do let us know what you find out on this topic, Data_Guy!

 

 

 

 

[[La...]]

Hi again, Data_Guy,

I found the study I was talking about. I've highlighted some of the most important bits for us here.

 

https://www.ncbi.nlm.nih.gov/pubmed/22517315 

 

2012;17(4):235-42. doi: 10.1159/000337273. Epub 2012 Apr 19.

 

Pharmaceutical countermeasures have opposite effects on the utricles and semicircular canals in man.

 

Weerts AP1, De Meyer G, Pauwels G, Vanspauwen R, Dornhoffer JL, Van de Heyning PH, Wuyts FL.

Author information

 

1

    Antwerp University Research Centre for Equilibrium and Aerospace (AUREA), Edegem, Belgium.

 

Abstract

 

INTRODUCTION:

 

Sensory conflicts in the vestibular system lead to motion sickness of which space motion sickness (SMS) is a special case. SMS affects up to 70% of the astronauts during the first 3 days in space. The search for effective countermeasures has led to several nonpharmacological and pharmacological approaches. The current study focuses on the effects of lorazepam (1 mg), meclizine (25 mg), promethazine (25 mg), and scopolamine (0.4 mg) on the vestibular system, with special focus on the canal and otolith functions separately.

 

METHODS:

 

The study had a placebo-controlled, single blind, repeated measures design. Sixteen healthy volunteers were subjected to a total of 7 test sessions, the first and last being without intake of medication. Semicircular canal function was evaluated by means of electronystagmography and otolith function with unilateral centrifugation. The horizontal semicircular canal function was characterized by the vestibulo-ocular reflex (VOR) gain measured during earth vertical axis rotation as well as the total caloric response. The function of the utricles was represented by the utricular sensitivity, reflecting the ocular counter roll relative to the virtual induced head tilt.

 

RESULTS:

 

Promethazine significantly decreased the semicircular canal and utricular parameters. Both scopolamine and lorazepam caused only a decrease in the utricular sensitivity, whereas meclizine only decreased the semicircular canal-induced VOR gain.

 

DISCUSSION:

 

The results show that the drugs affected different areas of the vestibular system and that the effects can thus be attributed to the specific pharmacological properties of each drug. Meclizine, as an antihistaminergic and weak anticholinergic drug, only affected the VOR gain, suggesting a central action on the medial vestibular nucleus. The same site of action is suggested for the anticholinergic scopolamine since acetylcholine receptors are present and utricular fibers terminate here. The global vestibular suppression caused by promethazine is probably a consequence of its anticholinergic, antihistaminergic, and antidopaminergic properties. Based on the fact that lorazepam increased the affinity of gamma-aminobutyric acid (GABA) for the GABA(A)-receptor and its effects on the utriculi, the site of action seems to be the lateral vestibular nucleus.

 

CONCLUSION:

 

Meclizine, scopolamine, and lorazepam selectively suppress specific parts of the vestibular system. Selective suppression of different parts of the vestibular system may be more beneficial for alleviating (space) motion sickness than general suppressive agents. Additionally, this knowledge may help the clinician in his therapeutic management of patients with either semicircular canal or otolith dysfunction.

[[Gu...]]

Says something for this group that it is 679 pages long........Is there any other support group with even close to this many pages?

This must be the number one symptom of withdrawal, though insomnia and tinnitus must be close runners up....

 

Just my  .02 worth

 

 

Alan

 

(wish mine would go away)

[[La...]]

Well, Guzzirider, I think there are definitely lots of people around here who have experienced dizziness along the way. I'm not sure which symptoms are most common, but, yes, this one is right up there, and it's seriously debilitating.

 

I wish mine would go away too!

[[La...]]

Hi Dizzy Buddies,

I came across this study which may be of interest to the gals around here. Here's the title:

 

"Relationship between the level of estrogen, calcium and phosphorus concentration in serum with benign paroxysmal positional vertigo"

 

Objective:To investigate relationship between the level of estrogen, calcium and phosphorus concentration in serum with benign paroxysmal positional vertigo(BPPV).

 

Method:A total of 84 patients with idiopathic BPPV were enrolled in the experimental group, including 32 non-menopausal women, 24 menopausal women, and 28 males; 83 healthy people without vertigo and vestibular disease were selected as the control group consisted with 32 non-menopausal women, 24 menopausal women and 27 males. The levels of estradiol, serum calcium and serum inorganic phosphorus were measured in all participants. The difference of estrogen level, serum calcium and serum inorganic phosphorus concentration between the experimental group and the control group was analyzed by t test.

 

Result:The total number, age distribution and gender composition of the experimental group and the control group were basically paired, and the age difference was not statistically significant (P=0.71). The overall estrogen level in the experimental group was lower than that in the control group (P<0.01). Among them, the female group's estrogen level, menopausal female estrogen level and male estrogen level in the experimental group were lower than the control group (P<0.01); there was no significant difference in serum calcium and serum inorganic phosphorus concentration between the experimental group and the control group (P=0.55, 0.11, respectively).

 

Conclusion:The decrease of estrogen level may be a risk factor for idiopathic BPPV. The relationship between serum calcium and serum inorganic phosphorus concentration and BPPV needs further study.

 

https://www.ncbi.nlm.nih.gov/pubmed/31163520 

 

For those of us around perimenopause and menopause, the fact that a decrease in estrogen may be related to certain types of dizziness provides a clue as to what factors may be influencing our own situations.

[[Lu...]]

Says something for this group that it is 679 pages long........Is there any other support group with even close to this many pages?

This must be the number one symptom of withdrawal, though insomnia and tinnitus must be close runners up....

 

Just my  .02 worth

 

 

Alan

 

(wish mine would go away)

 

Of all the ppl on this thread, did anybody heal from the dizziness... cause I’m starting to think that I just have to deal with this the rest of my life? Sorry I haven’t read the whole thread causes is too long !

[[La...]]

Yes!

 

As with all other sections on BenzoBuddies, people come and go all the time. They don't necessarily come back and tell us that they're better, although some do. But we just don't have any way of knowing who got better and who didn't. That's one of the difficult aspects of such a forum.

 

I look to the Success Stories to read stories of those who are better. Oftentimes, they mention some of their worst symptoms and dizziness is on that list.

 

Sorry I don't have more definite info. I'd like to have it too!

 

 

[[Jo...]]

Feeling this way impacts everything you do and curtails everything you want to do. I am working on acceptance and am trying so very hard to remember my body craves stasis and that all will heal, in time.  My family has grown callous, saying that I just don't WANT to do things. But that's not it at all. I never know when a dizzy escalation will happen. It affects driving, going to a mall or restaurant...heck  my son invited me to an Escape The Room party and I had to decline. I didn't think my anxiety would be a good fit for a party. Plus with this everyday off balance feeling, I am in a 24/7 escape the room mentality. Lololol!!!!

[[La...]]

Hi Joy,

I think your first line is excellent! Yes, I don't think there's any aspect of my life that this sensation does not affect. I'm so sorry your family doesn't get it, but I'm guessing it's rather common. Same here. I live alone, though, so they can just think their judgments of me don't affect me on a daily basis. I really don't think anyone can truly understand what it's like to feel this way unless they do or have done so before. It's very, very hard to describe and even harder to imagine if someone isn't going through it.

 

I was looking at your signature, and I just wanted to make sure I understand it. It looks like you're still tapering your diazepam...right? If so, it's a bit of a two-edged sword. Diazepam lasts a long time in the system, which is good for tapering, but perhaps not so good for balance. In any case, the benzos can all affect balance, and we don't really know if one is better than another. You're getting close to the end, though, so that's great! Keep up the good fight!

 

 

[[Jo...]]

Hello Lapis, thank you for the encouragement.  You have done an amazing taper and over the long haul, it is a rough task to stay upbeat. As to your question, I crossed over from xanax to valium in one go. My equivalent was 40 mg. Valium. Man, that rocked my world because I had no idea x was so powerful! This last 5 mg taper of v is kind of kicking me in the butt. However, the bright side is that the horrific ups and downs of xanax ,(between doses) is waaaaay more manageable on valium. I thank God every day to be able to read what others do to cope here on BB. You are so right in that unless you have "staggered" a mile in my dizzy shoes, you can't  get it. I don't blame my family and I would not wish this on my worst enemy, yet I do have some low moments of "why me? Why now?" Then I tell myself over and over that benzo sx do go away or at least lessen over time. Hang in there Lapis, and btw, that is one of my most favorite semi precious stones.

[[La...]]

Hi Joy,

Yes, lapis lazuli is one of my faves too! Such a beautiful colour!

 

So, thanks for the clarification regarding your taper. I was on clonazepam and couldn't taper directly from it, so, like you, I found that diazepam/Valium gave me a much smoother ride. My max dose on that was 8 mg, and I was so sleepy all the time from it. But I wasn't having the muscular spasms or panic attacks like I had with clonazepam, so I was grateful for that. Anyway, you're so close to the end -- especially if you started at 40 mg. Way to go! Will you go down 1 mg at a time now?

 

The dizziness, like the other benzo withdrawal symptoms, should lessen or go away. The Ashton Manual has a section on it, so I've kept that in my head and heart all along. My situation is obviously complicated by the multiple meds I was on.    I'll keep my fingers crossed that you're one of the lucky ones and that you won't have to deal with the dizziness for too long. In the meantime, take care and try to stay patient with it. I know...easier said than done.

 

 

[[Ki...]]

Hi all.

Wanted to say hello!!!!

 

I am a bit better but the dizziness boatiness still continues. Still home bound cant drive etc

Doctors are calling it MDds.

How are u alll.

Lapis thinking abt you

 

[[La...]]

Hi Kirkhero,

Nice to see you here again! I'm glad to hear you've had a bit of improvement. That's interesting that you've been given the Mal de Debarquement Syndrome diagnosis. From what I've read about it, I do think the symptoms are very much the same. However, I would be interested to know if they acknowledged that the onset of the symptoms was not a cruise or some other form of transportation, but rather a medication (or some medications). Did they?

[[Da...]]

Hi everyone,

 

I've done a bit of research on what drug is best used to taper once you develop dizziness or vertigo symptoms. It's tough to find much on this, so I went and collected what I could from the side effect profiles of the drugs. If anyone knows a place that has consistent reporting of side effect frequency, that would be greatly appreciated. I used Drugs.com, which is inconsistent and incomplete, unfortunately. This is what I found:

 

Adverse events from Benzodiazepines and Z-Drugs

Drug                         Dizziness ADR frequency           Vertigo

Clonazepam       Dizziness 10+%                  Frequency not defined

Diazepam                  3.00%                           FND

Lorazepam                 7.00%                           FND

Zolpidem                         12.00%                         1-10%

Zopiclone                           5-7%                           <1%

chlordiazepoxide           1-10%                         <0.1%

Alprazolam                 29.80%                         1-10%

temazepam                 1-10%                         1-10%

 

 

Unfortunately, there are quite a few missing values or wide ranges which are close to useless, but what stands out is that Xanax (Alprazolam) and Clonazepam seem to be the worst offenders, with Xanax taking the cake for most harmful benzo overall. What Xanax and Clonazepam (Klonopin) have in common is they are both very potent anxiolytics and have a high affinity for the GABA-A receptor. Xanax, from what I've read, seems to be far and away the most dangerous legal benzo, even beating out some opioids in terms of its deadliness. If you or someone you know is on Xanax, they might benefit from switching slowly over to Clonazepam, which has a longer half life and is less potent. I can provide the article on that if someone needs it. (Edit: this conflicts with the Ashton Manual. It may be better just to try and switch to diazepam, as Ashton recommends).

 

It's tough to conclude much from this, just because of the poor data. Even the FDA's information page for each drug is inconsistent in terms of whether they report frequency of side effects accurately. Some do not even list the frequency, some have a wide range and some provide an exact number, seemingly at random. Really, the only thing I can conclude from this, with high uncertainty, is that high potency = more problems.

[[La...]]

Hi Data_Guy,

Thanks for the post and your hard work. It does sound a bit like an exercise in frustration due to all the uncertainty.

 

By the way, I started reading one of the books you suggested to me, and so far, it's really interesting. I'm just starting the chapter on proprioception, one of the three systems involved in balance.

[[Ki...]]

Hi lapis

Nice to hear from you.

They are calling it the non classic type for which the reason is not known.

They are also saying I have migraine induced dizziness.

It is sad doctors donot believe a drug can cause this.

Iam off benzos since dec 2014 so it is a really long long time

I am definitely better with so many other symptoms but this one is not getting better.

I hope it improves so i can go out on my own and drive

I left work 5yrs ago.

Wishing all the best. 

[[La...]]

Hi Kirkhero.

Thanks for that info. We're pretty similar then in terms of being off the meds for a long time and still dealing with this insane symptom. I don't get migraines or headaches of any kind, so I'm sure mine would be labelled as Mal de Debarquement Syndrome, non-motion triggered, as well. Where and how did you get the diagnosis? Was that at the clinic in NYC?

[[Ki...]]

Yes we went to Mount sinai also

Paid out of pocket

They tried to align the complex in brain

Nothing worked

Infact I was surprised when they said take benzo to calm the symptoms after they triggered it saw so many Neurologists.

Finally one in MGH diagnosed it

Referred me to Mount Sinai.

But I am still living with this condition which no one can see.

But now my neurologist feels it shud get  better.

How di I explain that my poor brain is healing and went thru chemical insult 

[[Da...]]

Hi Data_Guy,

Thanks for the post and your hard work. It does sound a bit like an exercise in frustration due to all the uncertainty.

 

By the way, I started reading one of the books you suggested to me, and so far, it's really interesting. I'm just starting the chapter on proprioception, one of the three systems involved in balance.

 

Oh good. I haven't started on the books yet.

 

I think if I had a bit more experience searching for medical research I would have an easier time, but I don't think it was an entirely useless endeavor. Greater potency = greater problems is not exactly earth shattering, but it makes sense. If some people always have trouble with benzos and there isn't any exceptions among them, the problem must be fundamental to the pharmacology of benzos, thus "mo potency, mo problems" is actually a pretty useful thing to know if you can get a reliable hierarchy of potency together (that is the next task). I've been searching in vain for a summary of the receptor affinities for each benzo all in one place, but it looks like I may have to go collect them individually. The medical research internet makes nothing easy! I'm going to have to go to the university and get one of the librarians there to show me some tricks one of these days.

[[La...]]

Hi Data_Guy,

What about individual genetics and the CYP450 enzymes? The different benzos aren't all metabolized the same way, and depending on one's genetics, a person may metabolize something more quickly or slowly than expected, I believe. I'm a layperson, of course, but I do think it's quite hard to say with any certainty how will people do with these meds when we're all different genetically speaking. If people are taking other meds, then there can be interactions as well.

 

I found this link called Benzodiazepine Metabolism and Pharmacokinetics:

 

http://paindr.com/wp-content/uploads/2015/10/Revised-BZD_-9-30.pdf

 

I wouldn't be able to explain it, of course, but it does show that there are differences in metabolism, which would certainly interact with individual genetics as well.

 

There's also this page on the Benzodiazepine Pathway, Pharmacokinetics:

 

https://www.pharmgkb.org/pathway/PA165111375