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

[[La...]]

On the question of "acute" versus any other label we could put on the post-withdrawal period, I'm not really comfortable saying much. I don't know how useful it is, especially because we really don't have much solid research to refer to. Every case seems to be so different, and if you complicate the picture by adding in such things as other medications, other health issues, etc., it just gets even more unclear.

 

Personally, I was on different benzodiazepines, plus at different points, an SNRI and then an SSRI, so I couldn't see myself in the framework of the "phases of withdrawal" that people came up with. For women, depending on where we are in life, there can be hormonal changes that affect the picture as well.

 

All in all, I think it's best for me to stay out of the discussion of "acute", etc. But I continue to check out studies on PubMed and post things in the "Benzos in the News" section that might be of interest to other BBs. I just think there isn't much research that can speak to this issue. The rest of it is anecdotal, I think, and there's plenty of that here on BB, if people want to take the time to read lots of posts. As for me, I just can't do that much anymore.

[[Je...]]

Isn't it what we have: https://pn.bmj.com/content/18/1/5? "Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness". Apparently it's a somehow new concept that encompasses what was earlier described as "visual vertigo" or "chronic subjective dizziness", among others.

 

I've also stumbled upon an apparently rare disorder called "mal de débarquement", which is characterised by floatiness too, but alleviates when using transportation.

[[La...]]

Isn't it what we have: https://pn.bmj.com/content/18/1/5? "Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness". Apparently it's a somehow new concept that encompasses what was earlier described as "visual vertigo" or "chronic subjective dizziness", among others.

 

I've also stumbled upon an apparently rare disorder called "mal de débarquement", which is characterised by floatiness too, but alleviates when using transportation.

 

Hi Jelonek,

I've done lots of reading on this topic, and I've posted many articles on this thread about Mal de Debarquement Syndrome, and yes, for sure, there are similarities between how it's described and what dizzy BBs feel. I haven't posted much on PPPD, though, but there are definitely symptoms of that condition that also sound similar to what people around here describe.

 

I can share a link about MdDS that I came across recently for anyone who would like to read it. Apparently, it was updated as recently as May 15, 2021.

 

 

https://dizziness-and-balance.com/disorders/central/mdd.html 

 

Clearly, there's a lot that's unknown about MdDS, which is why I'm continuing to read about it. It does seem to affect more women than men, which brings up the possible link to hormones. That's mentioned in the article above. Genetics are mentioned as well, as are a number of other possible causes, including SSRI withdrawal. Too many questions remain, so more study is needed.

[[Je...]]

This website "dizziness and balance" sure is a mine of information! Lapis, have you tried contacting the author? Although he seems a bit too benzo-friendly...

 

He does seem to think that herbs are negligeable, though. Personnally, I worry about valerian. I started feeling dizzy during the last days I took valerian (which I had taken for three weeks), and dizziness worsened significantly after I stopped taking it. "Reinstating" on two occasions these last days has slightly alleviated the symptoms for a few hours. Googling "valerian" associated with "ototoxicity" yields the following result: https://www.biorxiv.org/content/biorxiv/early/2019/12/31/2019.12.30.891366.full.pdf : "Valeriana Officinalis Crude Extracts Impair Hair Cell Regeneration in Larval Zebrafish Lateral Line", although to what extent these results let us know anything of the effects of a normal dose of valerian to human ears (and a benzo brain), I have no clue.

 

Apparently, valerian is known to sometimes cause dizziness. Maybe discontinuing valerian without any taper has contributed to the worsening of my dizziness? Or maybe the sheer fact of taking it has just damage some receptors further?

[[La...]]

Hi Jelonek,

It would be really helpful if you could put up a profile, which includes what you took, how much, when, etc. From what I can glean, you've taken some medications and some herbal remedies, all of which could be contributing to what you're feeling now. When there's a mixture of medications and/or herbs, there is often a higher likelihood of interactions between substances. And, of course, we each have our individual genetic makeup and health status, and those factors affect how our bodies react to whatever we take.

 

In answer to your question, no, I haven't tried to reach the author, but I have certainly come across his name many times during my ongoing reading and research on this topic. He does seem to be pro-benzo, but I don't think we're talking about long-term use. Still, though, it makes me uncomfortable.

 

At this point, I will keep reading different sources to see what they say. There is no consensus, from what I can see. Too many questions remain. As the studies often say....more research is necessary.

[[Je...]]

As I've said, I started taking a tincture of valerian and other herbs 4 weeks after stopping lorazepam, because I barely slept for a week. But other than that, things were going fairly OK. Now I'm scared it just caused further, persistent damage. I understand that it's not in your power to bring me an answer over my ramblings.

[[La...]]

As I've said, I started taking a tincture of valerian and other herbs 4 weeks after stopping lorazepam, because I barely slept for a week. But other than that, things were going fairly OK. Now I'm scared it just caused further, persistent damage. I understand that it's not in your power to bring me an answer over my ramblings.

 

Hi Jelonek,

I know it's hard not to think and re-think about what we've taken in the past, but if you can, try to let that one about the herbal remedies go. I really doubt it was the cause of anything major. The medications are the more likely culprits for what you're going through. And if you're not taking anything else right now, then you're doing the best thing you can be doing as far as healing goes. Giving your brain a break and allowing it to try to find its way back to normal makes sense.

[[Je...]]

Hi Lapis,

 

It certainly does make sense! But I checked again today (because my mother passed away yesterday and I need to be functional in the coming days): I took the full mix (including valerian) yesterday, and like on two previous occasions last week, I felt  much better the next day (today). Not because it made me sleep because it no longer does, but because I wasn't nearly as imbalanced, had no excruciating headache (what a relief) and barely reacted to visual stimuli that would tire me these last few days (screen scrolling in particular). The difference with yesterday is just crazy.

 

In the website you linked recently, valerian is thought to have the same effects as benzos on dizziness: https://dizziness-and-balance.com/disorders/menieres/treatment/men_alt.html. So it seems it's essentially like I was taking valium all this time, causing myself a worse symptom 

 

By the way, what is this effect of benzodiazepines on dizziness ? According to the page https://dizziness-and-balance.com/treatment/drug/benzodiazepines%20in%20vertigo.html, they"decrease VOR (vestibulo-occular reflex) gain and phase". Do you understand how that can "help" with dizziness short-term?

 

I think that what makes the most sense in my situation is taking valerian until my mother is buried, and then taper. In the best possible scenario, the dizziness won't be as accute as what I experienced recently because of the tapering effect (?). And hoping that these were somehow, again, "acute" symptoms and that I'll feel better in a few months. If anything, knowing that valerian is partially responsible for this dizziness lets me think that completely discontinuing the herbs over a taper could alleviate the symptoms. Telling myself that it's just long-term benzo damage that kicked in 6 weeks off withdrawal is kinda worse, and really I don't think that's what happened.

 

Sorry if I'm repeating myself and rambling, but it makes me mad that I end up having to add another third regret to the list: taking the meds, stopping them abruptly, and now taking sedative herbs with potential for further damage one month after CT. Sure, the benzos are the main culprits, because they were the first to damage the receptors. But it seems likely that valerian (and possibly the others herbs) caused further deregulation. If not damage.

[[Je...]]

On a different note, have you heard about the therapists who say the can heal PPPD and other dizziness disorders by putting a strong emphasis on neuroplasticity? There are at least three youtube channels preaching this approach, "Joey Remeny, Seeking balance international" (apparently with great results), "Balance your life now" and "re+active physical therapy and wellness". All of them talk a lot about PPPD, but also say that the exact diagnosis is not so important.

[[La...]]

Hi Jelonek,

First of all, I want to extend my condolences to you on the loss of your mother. I'm so sorry to hear about that. I'm sure that makes everything much more difficult to deal with. If you feel you need some assistance from the herbal remedies to get you through this time, then I totally understand.

 

I had to go back to your earliest post here to try to understand what medications you were taking. Honestly, it would be very helpful for you to create a profile so that others could see a bit of your history. It clarifies things and helps others who are trying to support you. I see that you took both gabapentin and benzodiazepines, both of which can affect balance. It would be impossible to figure out how much each medication contributed to what you're feeling now, since there can be unknown effects when medications are combined. How much and how long you took each one can be factors as well. And, of course, each one of us metabolizes things differently.

 

So, I'm sure you're busy with your personal situation there, and I will wish you well. As far as the medications and herbs go, please know that there's little predictability....unfortunately. The herbal remedies may help, but they may not. Amounts in the pills or tinctures could be unpredictable, so it's hard to know exactly how much you're taking. I can only wish you the best with that. At some point, you will likely need to give your brain a break to allow it time to settle down. It's totally up to you, though.

 

Take good care, Jelonek.

[[Je...]]

You are right. Freaking out over every possible parameter is not the way to go.

 

Thank you very much for your condolences.

 

I was mentioning this "softer" neuroplasticity approach, because if I understood well, you were not successful with the vestibular rehab you've done a few years ago. Hope I'm not "putting my feet in the plate", as we say in French - meddle with somebody else's personal troubles.

[[La...]]

Hi Jelonek,

As a person who speaks French, I had to go hunting for that phrase, since I've never come across it before. Is it "mettre les pieds dans le plat"? 

 

Anyway, yes, you're right, I didn't find that vestibular rehabilitation exercises addressed my particular type of dizziness. Clearly, it's helpful for certain types of dizziness, but not all. While I do believe neuroplasticity is an important concept, I don't necessarily agree that the diagnosis doesn't matter. If there is a particular factor causing someone to be dizzy, and that factor can be corrected, then why not do so?

 

With all the reading I've done on this topic, I've come to understand that there are so many things about dizziness that are poorly understood. Mistakes are often made with regards to diagnosis. THe testing doesn't always reflect what's going on. And symptoms overlap, e.g. with PPPD and Mal de Debarquement Syndrome and Meniere's Disease, etc. In the case of MdDS, it's predominantly women who are affected, and many of the papers I've read on it question the role of hormonal changes in women as a possible cause or contributing factor. That link I shared here also referred to the possible role of SSRI withdrawal. The list of dizziness-inducing medications is enormous, and I've posted links on that topic here as well.

 

So, I'll continue to read......

[[La...]]

For anyone who's interested in the recent medical literature on Persistent Postural-Perceptual Dizziness (PPPD), which has come up in discussion in the last couple of weeks, there's this Japanese study from April 2021. If you want to read the full study, just click the link in the upper right-hand corner of the abstract.

 

"Subtypes of Persistent Postural-Perceptual Dizziness"

 

https://pubmed.ncbi.nlm.nih.gov/33935950/ 

 

Abstract

 

Background: Persistent postural-perceptual dizziness (PPPD) is a persistent chronic vestibular syndrome exacerbated by upright posture/walking, active or passive motion, and exposure to moving or complex visual stimuli. PPPD has four precursors: phobic postural vertigo, space-motion discomfort, visual vertigo, and chronic subjective dizziness. These four diseases share clinical features that form the basis of the diagnostic criteria for PPPD. Semiological similarities do not necessarily mean that PPPD is a single entity. However, if PPPD is not a single disorder but just a composite of four precursors, it may be subdivided according to the characteristics of each precursor.

 

Objective: To test whether PPPD is a single disorder, we attempted a subtyping of PPPD.

 

Methods: One-hundred-eight untreated patients with PPPD were enrolled in the study, who filled out the Niigata PPPD Questionnaire (NPQ) that consists of 12 questions on exacerbating factors for PPPD. A factor analysis of the patients' answers to the NPQ and a subsequent cluster analysis of the patients with PPPD using factors revealed by the factor analysis were performed. To validate our cluster classification, cluster differences were assessed using analysis of variance. Multiple comparison analyses were performed on demographical data, precipitating diseases, the Dizziness Handicap Inventory, the Hospital Anxiety and Depression Scale, and several vestibular tests to characterize each cluster.

 

Results: Factor analysis revealed three underlying factors among the exacerbating factors in the NPQ. Exacerbation by visual stimuli (visual factor) accounted for 47.4% of total variance in the questionnaire. Exacerbation by walking/active motion (active-motion factor) and by passive motion/standing (passive-motion/standing factor) accounted for 12.0 and 7.67% of variance, respectively. Cluster analysis revealed three clusters: the visual-dominant subtype (n = 49); the active motion-dominant subtype (n = 20); and the mixed subtype (n = 39). The patients in the active motion-dominant subtype were significantly older than those in the visual-dominant subtype. There were no significant differences among the subtypes in other demographical data or conventional vestibular tests.

 

Conclusions: The most common main exacerbating factor of PPPD was the visual factor. PPPD may be categorized into three subtypes. Conventional vestibular tests failed to point the characteristics of each subtype.

[[La...]]

Vesibular migraine is another diagnosis that has crossover with the type of symptoms many dizzy BBs feel. We've certainly had dizzy BBs receive that diagnosis. I'll share a recent study on that here, in case anyone is interested:

 

 

"Clinical, oculographic, and vestibular test characteristics of vestibular migraine"

 

https://pubmed.ncbi.nlm.nih.gov/33938251/

 

Abstract

 

Background: We characterise the history, vestibular tests, ictal and interictal nystagmus in vestibular migraine.

 

Method: We present our observations on 101 adult-patients presenting to an outpatient facility with recurrent spontaneous and/or positional vertigo whose final diagnosis was vestibular migraine (n = 27) or probable vestibular migraine (n = 74). Ictal and interictal video-oculography, caloric and video head impulse tests, vestibular-evoked myogenic potentials and audiometry were performed.

 

Results: Common presenting symptoms were headache (81.2%), spinning vertigo (72.3%), Mal de Débarquement (58.4%), and motion sensitivity (30.7%). With fixation denied, ictal and interictal spontaneous nystagmus was observed in 71.3 and 14.9%, and purely positional nystagmus in 25.8 and 55.4%. Spontaneous ictal nystagmus was horizontal in 49.5%, and vertical in 21.8%. Ictal spontaneous and positional nystagmus velocities were 5.3 ± 9.0°/s (range 0.0-57.4), and 10.4 ± 5.8°/s (0.0-99.9). Interictal spontaneous and positional nystagmus velocities were <3°/s in 91.8 and 23.3%. Nystagmus velocities were significantly higher when ictal (p < 0.001/confidence interval: 2.908‒6.733, p < 0.001/confidence interval: 5.308‒10.085). Normal lateral video head impulse test gains were found in 97.8% (mean gain 0.95 ± 0.12) and symmetric caloric results in 84.2% (mean canal paresis 7.0 ± 23.3%). Air- and bone-conducted cervical-vestibular-evoked myogenic potential amplitudes were symmetric in 88.4 and 93.4% (mean corrected amplitude 1.6 ± 0.7, 1.6 ± 0. with mean asymmetry ratios of 13.0 and 9.0%. Air- and bone-conducted ocular-vestibular-evoked myogenic potentials were symmetric in 67.7 and 97.2% (mean amplitude 9.2 ± 6.4 and 20.3 ± 12.8 µV) with mean asymmetry ratios of 15.7 and 9.9%. Audiometry was age consistent and symmetric in 85.5%.

 

Conclusion: Vestibular migraine is characterised by low velocity ictal spontaneous nystagmus, which can be horizontal, vertical, or torsional, and normal audiovestibular test results.

 

 

[[La...]]

This is updated information about caloric testing, which is the kind of vestibular testing that involves hot and cold water in one's ears. If you read the section on contraindications, you'll note that people should not be taking certain types of medications in the 48 hours before getting this type of testing, and the list includes anti-emetics (meds that make you less nauseous), anxiolytics (yes, that means benzos and Z-drugs) and antidepressants. These medications affect the vestibular system and could affect test results.

 

I will post part of the document here, and if you want to read further, just click on the link:

 

"Caloric Testing"

 

https://www.ncbi.nlm.nih.gov/books/NBK448103/#article-18785.s1

 

Continuing Education Activity

 

Caloric testing is a useful clinical tool that can assess and quantify the functional status of the individual vestibular systems. The test utilizes the mechanics of the vestibular-ocular reflex to test for a unilateral peripheral deficit. The vestibular-ocular reflex requires an intact brain stem to function, and its purpose is to maintain eye fixation on a stationary target while the head is in motion, thus keeping the object of attention in the center of the visual field. This activity describes the indications, contraindications and clinical relevance of caloric testing.

 

Objectives:

 

    Describe the anatomy of the middle ear structures involved in balance.

    Review the indications for performing caloric testing.

    Summarize the technique of caloric testing.

    Explain the importance of improving care coordination among the interprofessional team to enhance the delivery of care for patients with vertigo.

 

Earn continuing education credits (CME/CE) on this topic.

 

 

Introduction

 

Caloric testing is a useful clinical tool that can assess and quantify the functional status of the individual vestibular systems. The test utilizes the mechanics of the vestibular-ocular reflex to test for a unilateral peripheral deficit. The vestibular-ocular reflex requires an intact brain stem to function, and its purpose is to maintain eye fixation on a stationary target while the head is in motion, thus keeping the object of attention in the center of the visual field. As described below, caloric testing manipulates the vestibular-ocular reflex to test the lateral semicircular canals and their afferents specifically. [1][2]

 

Anatomy and Physiology

 

The semicircular canals are the three fluid-filled structures in the inner ear that provide the brain with spatial orientation. Each semicircular canal dilates into a fluid-filled sac called the ampulla which contains the sensory component of the vestibular system. When the endolymph is warmed (by air or water), an artificial current is created which moves the hairs in the lateral (horizontal) semicircular canal, thereby causing an imbalance between the right and left vestibular-ocular reflexes. This results in nystagmus with both fast- and slow-beating components, depending on the current in the ampulla. When a cold temperature is applied, it causes a fast-beating nystagmus in the opposite direction of the side being challenged and a slow-beating nystagmus in the contralateral side. The opposite goes for an applied warm temperature. The mnemonic COWS (cold, opposite, warm, same) makes it easy to remember this fast nystagmus component. [1] [3]

 

Indications

 

Caloric testing is clinically useful as a bedside test to isolate the peripheral vestibular system and rule out central etiology of vertigo. When there is a high suspicion for a peripheral lesion, bi-thermal caloric testing is typically performed. However, in cases in which there is a low pretest probability, it can be appropriate only to utilize mono thermic caloric testing and stop when the test is negative or in other words, responses are symmetric (therefore likely indicating a central process). The advantage caloric testing has over other studies, such as the vestibular evoked myogenic potential and video head impulse test, is that it does not require head movement to be conducted, rendering better patient compliance in those patients whose symptoms worsen with movement, as well as in patients with limited cervical mobility. [1] [4]

 

Another indication for the use of this test is for brain stem testing in comatose patients. As described above, the reflex arc requires an intact brain stem, and therefore lack of nystagmus could indicate a brainstem lesion. [5]

 

Contraindications

 

Medical use of pharmaceuticals that can affect the vestibular system (anti-emetics, anxiolytics, and antidepressants) within 48 hours of testing is a relative contraindication. [1]

[[La...]]

Here's a German study from May 2021 that looks at "unclear chronic vertigo syndromes" -- yet another study that refers to the difficulty in diagnosing different types of dizziness. There's a link to the full study, but there's no English translation there.

 

"Unclear chronic vertigo syndromes-experiences with an interdisciplinary inpatient diagnostic concept"

 

https://pubmed.ncbi.nlm.nih.gov/33944963/

 

Abstract

 

Dizziness is a common leading symptom. Especially patients with chronic vertigo syndromes experience a significant impairment in quality of life up to a limitation of their ability to work in the case of employed persons. The consequences are financial and capacitive burdens on the health system due to frequently multiple examinations and sick leave up to occupational invalidity of the affected patient. In 150 patients with chronic vertigo syndromes and an unclear outpatient diagnosis, at least one diagnosis that justified the complaint was made in over 90% of cases on the basis of a structured interdisciplinary inpatient diagnostic concept. Chronic vertigo syndromes are often multifactorial. Psychosomatic (accompanying) diagnoses were found in more than half of the patients. Targeted therapy can only be recommended after establishing a specific diagnosis. This justifies an interdisciplinary inpatient diagnostic concept for persistently unclear cases.

[[La...]]

Thank you Lapis. How are you today?

My pulling coupled with diarrhea is strange and rarely gives me a break. Although it’s less intense at times, it’s so debilitating. My boatiness is more sometimes and mild sometimes. All I can do is wake up and see what shape I’m in. I’ll be so glad when this leaves for good. It’s my worst longest lasting symptoms

[[La...]]

Hi LadyDen,

I seem to have a three-day pattern of dizziness, with two bad days (usually 9 out of 10 on my scale, then 8 of of 10), followed by a less dizzy day (7 or 6 out of 10 for me). It's bizarre, but I've been charting it for a long time. No idea why it's like that. It used to be an every-other-day thing of one better day followed by a worse day. Then it changed. It any case, boatiness/push-pull/floating/etc. are all part of the mix. Today's a 9. Yesterday was a 6. The 6s allow me a break and remind me that it's changeable.

 

If you've got diarrhea, LadyDen, I hope you're drinking enough water and taking in a bit of extra salt to prevent any dehydration. Take care! That can be really debilitating.

[[La...]]

I’m drinking plenty of liquids and putting season salt on my food. It has no msg in it. Also my crackers are salted too. Wow your pattern of dizziness is strange. My pattern since I’ve had this setback has changed too but not in a good way. You would think that once you’re changed in a good way that we’d stay but nope! Back and forth with each day unpredictable. Certainly wears us down. I’m amazed at how long you’ve been dizzy. I know you’re very tired of it. I know even though it’s been awhile dealing with this you still have been a relentless support to others Lapis. I want to commend you for that! You definitely deserve an award 🥇 There’s hope for us. I’m holding on to that. I’ve had a nearly 2 month stretch of nearly total relief. So I know my brain can do it again permanently. It’s the waiting for it to happen that’s so hard. I’m sending you hugs and wishing you more 6 level days or less.

Today I’m pulling again. Yesterday it wasn’t as bad. So distracting here I come!!!

[[Ho...]]

Been following this thread for a while and the recent dialog between LadyDen and Lapis.  I have had this lightheaded, floaty-boaty feeling everyday for the past 3 years!  It varies in intensity. Some days it can be just mildly annoying and other days (today) I feel like a bobble head doll. It feels like the ground is coming up to meet me, kinda knocking me around. My eyes won’t focus very well and when I try and force them…Yikes!

 

I have had all sorts of testing done to include vestibular therapy. Nothing helped! I don’t use alcohol, tobacco or caffeine and I have a clean diet but nothing seems to make any difference. It just acts the way it does with no rhyme or reason. Good sleep, bad sleep, none of it seems to matter. Starting to think that is just going to be the new normal for me. Wish this was the only symptom I had left! 😞

 

Not looking for any answers here…Just wanted to chime in to let y’all know, you’re not alone!

 

Best wishes and healing thoughts!

[[La...]]

Thanks for your input, LadyDen and Hopper, and for the kind words and healing thoughts. We all need lots of that. 

[[La...]]

Been following this thread for a while and the recent dialog between LadyDen and Lapis.  I have had this lightheaded, floaty-boaty feeling everyday for the past 3 years!  It varies in intensity. Some days it can be just mildly annoying and other days (today) I feel like a bobble head doll. It feels like the ground is coming up to meet me, kinda knocking me around. My eyes won’t focus very well and when I try and force them…Yikes!

 

I have had all sorts of testing done to include vestibular therapy. Nothing helped! I don’t use alcohol, tobacco or caffeine and I have a clean diet but nothing seems to make any difference. It just acts the way it does with no rhyme or reason. Good sleep, bad sleep, none of it seems to matter. Starting to think that is just going to be the new normal for me. Wish this was the only symptom I had left! 😞

 

Not looking for any answers here…Just wanted to chime in to let y’all know, you’re not alone!

 

Best wishes and healing thoughts!

Hopper it’s pretty much the same for me too. Mine does what it wants when it wants. I’ve read some posts on here suggesting that once you can sleep well then healing happens faster and better. Well I must be the exception to that rule because I’ve been sleeping very well since day 1 of my 10 month taper. Now I’m 13 months off and still sleeping well on most nights. I average 6-7 hours! I’m sure whoever posted that was in the mindset that the body repair while sleeping especially the brain. That is true but our brains aren’t normal. They’re injured. But oh how I wish that was true. I’d be the fastest healed person on here! Lol

Sorry you’re dealing with this dreadful symptom this long. 3 years is absolutely crazy. Maybe we will be like some others to wake up with it gone never to return. Wouldn’t that be great!!! Hugs to you. Don’t lose hope.

[[La...]]

Hopper are you able to ride in a car?

Thanks Lapis! I wish you well too. Atleast we have each other through this. It’s great support to have someone else that understand this. Not that I’d wish this on anyone…. Noooo wayyy!!!! The fact that it goes up and down in intensity is encouraging. I’m sure it will be gone someday soon. What a shame to feel like we’re on a boat or in a funhouse every day for month after month after month…years even. Our vestibular system really took a pounding. I know we’re tired of waiting but we must. Good thing I have Netflix Youtube and Firestick Lol

I really miss going for walks. ☹️

[[Ho...]]

LadyDen,  I don’t drive when I feel this bad. It’s seems somewhat dangerous to attempt. It seems as if all the stimuli of being in a moving vehicle make it worse. If I travel in a car for long periods of time it makes all my inner vibrations so much worse. It takes about a day for that to right itself back to the normal moderate vibrations.

 

Today was a lot of head pressure and imbalance. Spent most of the day laying down watching tv when my eyes would focus.

 

I hope you are right and we just wake up one day feeling normal again! 😊

[[La...]]

Yes I heard about the driving thing. I’m not in a rush to drive. I just want to ride in the car without inducing a panic attack because it immediately revs up my symptoms. I start having back to back adrenal surges. Scary!!!! I’m just going to have to endure the 12-15 minute ride to my new apartment. I was wondering if this happened to you too? If so what was the consequences of you forcing yourself to keep riding in the car once you start going down the road? How do you help yourself in the car? What helped you cope?