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

[Guest [mi...]]

Hi lapis!

I contacted you some time ago. It was just when I had finished my taper in February. I said then that two days after I jumped I started to have dizziness mostly in the morning. It would go away and only would come back if I rose my head up. It diminished during my three month off of the medication.  Regrettably and due to a supplement (L-theanine) ,that put me in hell ,I had to reinstate at the end of may but after week I started my taper again being now at 0.625mg from 1 mg dose when I reinstated. I thought reinstatement would be really bad but to my surprise it not only saved me but I feel much better. The only issue is the dizziness in the morning again, this time more acute and vision problems.

I started with benzos due to extreme insomnia after taking Cipro that was actually the drug that screwed me up. No dizziness after the cipro aftermath or when I started benzos.

My big dilema is if the dizziness is due to the antibiotic and the benzo is masking in it or both. Cipro is an evil drug too. I can believe it's still bothering me after two years.

I also have tinnitus, the pulsatil type so there is another symptom I have to deal with. All this is probably an indication that my auditory system has been compromise probably because of both drugs.

I really hope all this symptoms are just benzo use or withdrawal and as time goes by all this will go away.

Any comment will be appreciated.

Regards

Miguel

 

[[La...]]

Hi Miguel,

I think you're right that it's difficult to tease out which drug might be doing what. Both types of medications are on the list of "ototoxic" medications, meaning they can affects the ears (hearing and/or balance). I, too, have both disequilibrium and tinnitus, and I think it's the combination of both the benzos and SSRIs I took.

 

In any case, let's hope that it all goes away! When we take meds, there are obviously risks involved. If we take a combination of meds, then the risk of interactions and side effects increases, and it becomes very tough to separate one thing from another.

 

It's great news that you're getting close to the end of your taper. I'll definitely keep my fingers crossed that your dizziness settles down soon. You're on the right track!

[[La...]]

How's everyone doing around here? I hope everyone is hanging in there.

 

By the way, was anyone heard from BigSky? I keep thinking about him and wondering what happened since we last heard from him. If he's checking in, I do hope he'll give us an update.

 

In the meantime, take care, Everyone. 

[[La...]]

Hi All,

Just checking in here again to see how people are doing and to share a study on ototoxicity. Ototoxic medications are those that affect the ears, i.e. hearing and/or balance. Benzodiazepines and SSRIs are considered "ototoxic". I'm not sure how many people around here have tinnitus, but I definitely do. Mine is a high-pitched hissing sort of sound. I've had it pretty much since the beginning of my dizziness, and it varies in intensity. I try to ignore it. Otherwise, it can be seriously annoying.

 

This study is called "Drug-induced hearing loss as a manifestation of drug-induced ototoxicity". It doesn't mention benzos or SSRIs in the body of the copy, but it does list a number of other ototoxic meds (see bolded line), including non-steroidal anti-inflammatories (e.g. ibuprofen, naproxen).

 

https://www.ncbi.nlm.nih.gov/pubmed/31579063 

 

Abstract

 

The ability of drugs to have an ototoxic effect has been studied for a long time, however, the true prevalence of this undesirable phenomenon is unknown, which is due to the use of various audiological protocols, a wide range of reactions to drugs in different ethnic groups, and most importantly, the lack of caution with regard to otological symptoms due to their reversibility or lack of immediate threat to life. Drug-induced ototoxicity is a functional disorder of the inner ear (cochlea and/or vestibular apparatus) or eighth pair of cranial nerves. Pharmacotherapy, associated with the development of ototoxic drug reactions, may remain undervalued for a long time, often until irreversible hearing impairment is formed. The most frequently prescribed drugs that cause ototoxic phenomena include anticancer drugs, antibacterial drugs of the aminoglycoside group, loop diuretics, calcium channel blockers, non-steroidal anti-inflammatory drugs, antimalarial drugs, salicylates, etc. Monitoring the degree of hearing impairment before and during therapy is important in preventing the development of drug-induced ototoxicity and makes it possible to consider alternative treatment regimens in a timely manner. It is in this connection that the role of participation in the appointment of rational pharmacotherapy to patients with a potential risk of developing otological phenomena of a clinical pharmacologist and audiologist undoubtedly increases.

 

Here's a bit of info on ototoxic medications:

 

https://www.soundrelief.com/list-of-ototoxic-medications/ 

 

http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf

 

https://www.dizziness-and-balance.com/disorders/bilat/ototoxins.html 

[[La...]]

Here's another study to share. This one is about the Mal de Debarquement Syndrome, a balance issue with symptoms that are very similar to what many of us suffer from around here, i.e. a floaty-boaty sensation. I and others have posted some studies about this syndrome before, but I believe this is the first study I've seen on it in 2019.

 

"The Mal de Débarquement Syndrome"

 

https://www.ncbi.nlm.nih.gov/pubmed/31580016

 

The Mal de Débarquement Syndrome (MdDS) is characterized by a persistent (> 1 month) sensation of self-motion, most of the time initially motion-triggered (i.e. boat, car, airplane travel). The symptoms are markedly diminished during a new exposure to passive motion. Female are more often affected. The vestibular functional assessment and cerebral imaging are normal. Chronic fatigue, headache, hypersensitivity to visual stimuli are other classical features of MdDS. The impact of MdDS on quality of life is significant. Maladaptation of the vestibulo-ocular reflex, abnormal functional connectivity as well as gonadal hormones imbalance are possible causes of the MdDS. Exposure to optokinetic stimulations, and transcranial magnetic stimulations open therapeutic perspectives.

[[La...]]

Hi All,

It's been rather quiet around here as of late, and I'm hoping that's good news. If anyone is interested, I just found a study on dizziness and driving regulations. It's called "Vertigo, a Driver's Licence with and without Permission to Drive: Are the Current Guidelines Justified?" If you're driving while dizzy, please (please, please!) be careful!

 

Have a look:

 

https://www.ncbi.nlm.nih.gov/pubmed/31610595

 

This article critically discusses the current assessment guidelines valid since 2014 which must be applied to determine the driving aptitude of patients with dizziness and balance disorders (in the official document called "disorders of the sense of balance"). With all due respect for the meticulous work of the expert commission who established the guidelines - the likes of which are not known anywhere else - we consider their revision imperative. On the basis of our many years of experience in the German Center for Dizziness and Balance Disorders of the LMU Munich it is our opinion that these restrictions are too strict and the required dizziness-free intervals are too long.The guidelines now stipulate the following for drivers with a group 1 driving licence ("private"):1) Patients with Meniere's disease (attacks without prodromes) must have had no attacks for 2 years before it is possible to drive a car again.2) Patients with vestibular migraine without prodromes must not have had any attacks for 3 years.The following stipulations hold for drivers with a group 1 and group 2 driving licence ("professional driver"):3) Patients with bilateral vestibulopathy as a rule are considered to have a driving disability, likewise4) Patients with central vestibular forms of vertigo, e. g., oculomotor disorders like downbeat and upbeat nystagmus syndromes are also as a rule regarded as having a driving disability.5) Patients with functional (psychogenic) forms of dizziness (e. g., phobic postural vertigo) who have a group 1 driving licence are considered to have a driving disability if dizziness occurs while driving. Those with a group 2 driving licence are in general considered to have a driving disability. However, many patients with episodic or chronic dizziness have such minor symptoms that their driving fitness is not relevantly impaired or if they do have an attack, they are able to stop driving in a controlled manner. In contrast, the restrictions on other illnesses that are accompanied by attack-like disorders of cognition and consciousness like the epilepsies are less strict. Depending on the type of attack or its trigger, the attack-free interval for such patients with a group 1 driving licence amounts to 3 months up to 1 year, although they clearly are not fit to drive during an attack.

[Guest [mi...]]

Hi Lapis,

Thanks for show interest in how are we doing!

My dizziness it's not as bad as before. I've been doing exercises that target the vestibular system and it worked some. Also I have been doing some tinnitus therapy thru sound that also helped. I leave the link below that talks about it .

I just switched to liquid after reaching 0.375 mg of K but I started to feel the change a little bit. I read here in BB that many had issues changing to liquid. I don't know if it is psychosomatic or part of the withdrawal. Sometimes I wonder if just keep going cut and hold.  I'm really tired of this crap. It's been two years since my ordeal started and there were a few times that I really felt myself. I know a lot had to do with attitude and I'm determined to fight this but the psychological symptoms as DR/DP really bother me. 

My tinnitus got a little bit louder. The fact that has been with me for a long time helps me to handle it. Going to New York next week to rule out a vascular problem. Thanks to a site Woosher.com I learn a lot about it and where to go. It's not the regular type as I told you. It bothers me that most opinions say it is going to stay and the most probable cause is lost of hearing or nerve damage. But I still have hope that at least is going to diminished in the long term.

Sorry, my comments are more on the sad side but it's nice to have people that understand and give you hope. You are one of them!

Thanks

Miguel

 

[[La...]]

Hola Miguel,

Good to hear from you! I'm so glad to hear that you're doing a bit better too. That's wonderful! Thanks for sharing the video about tinnitus. Very interesting! They mentioned medication as one of the well-known causes of tinnitus too. Mine's still there, but it varies in volume. Recently, it's been quite loud, but I find I can ignore it when I'm busy with things online or listening to the radio. At night in bed, though, it's really annoying.

 

I can't say much about liquid vs. pill tapers. I didn't even know about other methods when I got off my clonazepam all those years ago. I just switched to diazepam, and then used the cut-and-hold method from the Ashton Manual. There's lots of discussion here on BB about the various methods, so it's really a matter of reading about it and trying to decide which method might be more comfortable for you.

 

I understand your fatigue with the whole thing, and I'm sure everyone can relate. Absolutely. But you're doing really well, so just keep moving forward. Would you mind reporting back here on how things go in  New York? I wish you all the best with that.

 

[[Ne...]]

Hi Lapus!

I’m jumping on this board because I’m scared shitless. I’m a little over 3 years off from taking .5 k every day for over 5 years. (Jumped Sept. 2016). My first year off seemed ok. It’s gotten progressively worse since. Of course I married 2 children in 2017 and this year (just a month ago we moved to a new house, an hour away. It was a big move and quite stressful.

The last year the insomnia has been worse and the anxiety seems worse. I work with my husband from home so I am able to rest when I need to. Some things have improved, others have worsened.

Anyway, the dizziness has come on strong. I’m SO nervous it could be something else. I do t want to start with ct scans or anything like that. But how can we know if it’s s9 thing serious? How would you know if you’ve suffered a stroke or have a brain tumor? I know I sound like I’m really going off the rails, but I’m so anxious right now. Any insight or past experience from you or anyone else would be so helpful and appreciated.

[[La...]]

Hi New girl,

It wasn't quite clear from what you wrote whether you were dizzy before or not. Were you dizzy, and then did it get worse? Or is this a new symptom? Either way, if you're concerned at all that there might be something serious going on, then you should definitely get it checked out. Dizziness is a symptom of many different kinds of illnesses, and it's not always easy to diagnose. I think you'd be aware if you'd had a stroke, because you'd have an array of serious symptoms. I really don't feel right about saying anything about brain tumours, because it's not my place at all to do so.

 

For new dizziness, people usually start with their family doctors, and then s/he can assess which tests might be necessary. Tests might include blood tests, blood pressure, vestibular, vision, CT, MRI, etc.

 

Obviously, if you're taking any medication at all, then that's something to look at too. Stress, anxiety, lack of sleep, etc. can all play havoc with balance, as can hormonal changes.

 

Again, if you're really concerned, then it might be a good idea to get some medical input -- if only to put your worries to rest. With benzo dizziness, tests often come back normal. Even with a type of dizziness called Mal de Debarquement Syndrome, the tests are often "negative" (see the abstract above -- from Oct.12/19).

 

I hope that helps a bit. Take good care!

[[Sp...]]

Hello! 

 

I am experiencing the "boater" feeling for about two months since doing a fairly fast taper (26 days) off of Librax.  I felt fine until a day after jumping off at 2.5mg and then I hit the wall (muscle twitches, elevated BP, elevated tinnitus, insomnia, agitation, head pressure and the dizziness that feels like I'm on a cruise ship.  When I hit the wall I jumped back on my last taper 2.5mg and struggled for a week until I saw a chem. dependency doctor.  He put me back on one capsule (5mg of librax) to stabilize me.  All my symptoms improved with the exception of the head tension and the "boater" feeling.  The head tension has resently also improved but the "boater" feeling has still persisted.  My plan was to do a water titration to taper off the last 5mg capsule of librax.  Do you think I should wait till the dizziness thing goes away? 

 

My feeling is that if I rid myself of this drug my brain can than begin healing.  By the way, i now would go much slower in the taper at least 200 days or so. WOULD APPRECIATE YOUR OPINIONS

[[La...]]

Hi Spartan,

I'm really glad to hear that some of your other symptoms settled down, but of course, I'm so sorry to hear about the remaining "boater" dizziness. It's obviously a troubling symptom. But my thinking on this is similar to yours, in that I think a good, steady taper at a slower pace makes sense. These medications can affect the vestibular system while people are taking them, and obviously, during the taper and withdrawal periods as well. So, there is no guarantee that the symptom will settle down if you wait and stay on the medication indefinitely. I favour taking steps towards getting off it.

 

One of my huge regrets -- and sources of anger -- is that I didn't find out why I was dizzy until more than two years had passed. I saw many specialists and had a lot of testing. Finally, it was determined that the medication was the cause. Had I started my taper two years earlier than I did, i.e. soon after it started, then my life might have taken a different and better course. For me, earlier withdrawal would have been better. I did do an Ashton style taper, so it was a slow and steady thing, but it was so late in the game.

 

Have you discussed this particular symptom with your doctor? I'd be really interested to hear what s/he has to say about it and whether s/he agrees with your plan. To me, it sounds good!

 

 

[[Aj...]]

Last few days I’ve started having vertigo when move from lying to standing, standing to lying or turning over in bed etc. I know it’s probably WD but worries me because vertigo was one of my main ME/CFS issues before ever took Benzos.

[[sk...]]

About 3 weeks ago I suddenly started feeling like I'm walking on a soft mattress through deep water.  I felt like this for a couple of years when I first got off clonazepam but then the feeling went away.  So here I go again with this same feeling.  Oh, the fun of withdrawal!!

 

[[Sp...]]

Thanks Lapis2. 

 

I see the chem. dependency doctor next week.  I had a phone call with him last month and briefly mentioned my taper plan.  He told me that they don't really "do that", but he has heard of this liquid titration.  At this point, even though he seems very experienced, I'm making my own decisions about how I taper.  I got into this dilemma trusting doctors. 

 

Before starting this apparent fast taper I checked with my PCP (sent her the Ashton schedule for librium taper stage 13 -17), my GI doctor and the pharmacist. All said sounds good.  I didn't realize that, since I was on a very small dose of librium, I was actually cutting 25% each week. 

 

My PCP later told me I would feel better in a week and most people recover in 3 to 4 weeks.  NO CLUE and she was a pharmaceutical major before going to med. school.

 

I will specifically ask the dependency doctor about the dizziness "boater feeling" and let you know.

[[Sp...]]

Hi Ajusta,

 

I had BPPV (benign paroxysmal positional vertical) about 6-7 years ago and recently again six months ago.  It is not related to Benzos and is completely benign.  You can go to a physical therapist and they will do an Epley maneuver. The vertigo is caused by crystals that form in your inner ear and get displaced.  I had very similar symtoms that you describe.  When getting into or out of bed you get a spinning sensation and also when rolling over on the affected ear. 

 

This year I found on YouTube this doctor that invented a procedure you can do by yourself.  She is an ENT and came down with BPPV herself.  Look up Vertigo Treatment-how to treat vertigo on YouTube.  I did what the ENT calls a referse somersault a couple times and it worked!

 

Hopfully what you have is BPPV and this would be an easy fix.  Good luck!

[[La...]]

Yes, Ajusta, I would second what Spartan said on this one. Please get checked for Benign Paroxysmal Positional Vertigo (BPPV)! There is a very high cure rate for that with the Epley Maneuver and certain types of vestibular exercises (or vestibular rehabilitation). If it's benzo-related, then of course, patience is in order. Some people's symptoms wax and wane, so it could be a transient thing. I think it would be prudent to get it checked out, though.

 

 

[[La...]]

About 3 weeks ago I suddenly started feeling like I'm walking on a soft mattress through deep water.  I felt like this for a couple of years when I first got off clonazepam but then the feeling went away.  So here I go again with this same feeling.  Oh, the fun of withdrawal!!

 

Hi skatootle,

I was just mentioning above that symptoms can wax and wane. I really hope this bout of dizziness is short-lived for you. Definitely NOT fun! 

[[Aj...]]

Hi Ajusta,

 

I had BPPV (benign paroxysmal positional vertical) about 6-7 years ago and recently again six months ago.  It is not related to Benzos and is completely benign.  You can go to a physical therapist and they will do an Epley maneuver. The vertigo is caused by crystals that form in your inner ear and get displaced.  I had very similar symtoms that you describe.  When getting into or out of bed you get a spinning sensation and also when rolling over on the affected ear. 

 

This year I found on YouTube this doctor that invented a procedure you can do by yourself.  She is an ENT and came down with BPPV herself.  Look up Vertigo Treatment-how to treat vertigo on YouTube.  I did what the ENT calls a referse somersault a couple times and it worked!

 

Hopfully what you have is BPPV and this would be an easy fix.  Good luck!

 

Yeah, I was wondering g about that. Will get osteopath to do it next time I see her.

[[La...]]

Thanks Lapis2. 

 

I see the chem. dependency doctor next week.  I had a phone call with him last month and briefly mentioned my taper plan.  He told me that they don't really "do that", but he has heard of this liquid titration.  At this point, even though he seems very experienced, I'm making my own decisions about how I taper.  I got into this dilemma trusting doctors. 

 

Before starting this apparent fast taper I checked with my PCP (sent her the Ashton schedule for librium taper stage 13 -17), my GI doctor and the pharmacist. All said sounds good.  I didn't realize that, since I was on a very small dose of librium, I was actually cutting 25% each week. 

 

My PCP later told me I would feel better in a week and most people recover in 3 to 4 weeks.  NO CLUE and she was a pharmaceutical major before going to med. school.

 

I will specifically ask the dependency doctor about the dizziness "boater feeling" and let you know.

 

Okay, Spartan, good luck with that next appointment -- and with your taper, of course!

[[Ho...]]

I’m almost a year off and still experience this daily!  Floor coming up to meet me, dizzy, faint feeling, fuzzy benzo flu feeling head, etc.  Some days are better than others but this has been constant since going into acute BWD about 18 months ago. It’s is accompanied by a vibrating feeling throughout my body and EXTREME tinnitus.  I try and stay hydrated and eat right, but it doesn’t seem to make a difference.

[[La...]]

Hi Hopper,

It definitely makes sense to eat as well as you can and to stay hydrated. I, too, haven't found anything specific that either makes my symptoms better or worse -- except the overnight period. I wake up feeling either more dizzy or less dizzy than the day before. But the change seems to happen in my brain while I'm sleeping (or trying to sleep!). I have an every-other-day pattern of better days/worse days with regards to dizziness. Have you noticed anything like that? Or a pattern during the day?

 

Are you able to stay mobile despite your symptoms? I really hope so. I know how debilitating it can be.

[[Ho...]]

Lapis, If I am reading your signature block correctly, you have been off for 6 years and you are still experiencing the dizziness.?.?  That is very saddening to me. I’m so sorry!

 

I don’t seem to see any real daily pattern in my dizziness, Other than it is usually at its worst upon waking in the morning and late at night. It’s hit or miss throughout the day.  I have had some good days where it is tolerable, then I have some days like today where I had to just go lay down and try to “sleep it off”.  I also have very severe tinnitus.  I don’t know what silence sounds like anymore!

 

Hoping we get some relief from this soon!

[[La...]]

Hi Hopper,

Yes, it's been a really long road for me. In my case, I was on two different benzos for a good part of the time, and for another part of the time, I was also on an SSRI. I think the combination of medications, as well as whatever unlucky genetics I seem to possess, are the cause of my long-standing misery. And, as an added bonus, I'm in the middle of some hormonal changes that most women have to deal with at some point (!), but you, as a man, will never have to face. From what I've read and seen, such hormonal changes can significantly affect women's health in mid-life.

 

I'm well familiar with loud tinnitus, although I must say that I've had periods where it's quieter and I can completely tune it out. Right now, I"m in a loud phase. 

 

And yes, for sure, may it all end soon for everyone! Fingers (and other body parts) crossed!

[[Ho...]]

Lapis, I don’t have the added hormonal issues that you may be experiencing, but I’m not a young man. I sometimes wonder if that’s why I’m having such a hard time getting past all of this.?.?  The BWD has taken over my life so completely that I don’t even know which of my current ailments are attributed to the BWD. Could be all of them, could be half, who knows anymore.?.?  It’s all just so exhausting.

 

I hope you were able to enjoy your day and Thanksgiving if applicable. 😊