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


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Dizziness and sometimes vertigo seems to be my most bothersome withdrawal symptom.  Mine isn't just being dizzy, it is a heaviness in my head that makes it seem as though i am being pulled from one side to the other, completely off balance.  It is a horrible feeling, on top of the other symptom.  Recently though I had been going through a period of my symptoms being at least manageable, that was until I came down with the stomach flu for two days and since then I have been having almost constant dizziness/heaviness in my head and upper body.  I am glad to know of this support thread and that others have had exacerbation of their symptoms after an illness, it is rough for sure.  It has been a solid 4 days and this is the longest I have gone without some soft of reprieve for a little rest from this nightmare I don't seem to be able to wake up from.

 

I dont suppose there is any thing that can help with this particular symptom? I do not really think there is, the only thing is just time and healing!

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Hi Maggie,

What you're describing certainly sounds familiar. I know it's hard to describe, but that "pulled from one side to the other" is really common with benzo withdrawal, it seems.

 

Some people around here have tried vestibular rehabilitation exercises and/or Betahistine, a medication that's usually used for Meniere's Disease. Whether these can address benzo withdrawal dizziness isn't quite clear, but if you haven't had your dizziness assessed, it might be worthwhile to do so. There are many, many causes of dizziness, and some types are treatable.

 

Benzo dizziness is probably like the other symptoms that are part of the whole syndrome of benzo withdrawal, in that they should hopefully go away in time. But how much time? That's the question we just don't have the answer to.

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You know, as hard as I try I cannot describe the feelings I have with the benzo withdrawal to anyone so they could possibly comprehend the magnitude of this, so to have someone understand and "get it" is a true blessing! I have tinnitus with my dizziness and I have had some therapy treatments to help with vestibular dysfunction prior to me coming to the conclusion that I was suffering from benzo dependence and having interdose withdrawal, which is what prompted my beginning to taper in the first place.  I felt as if the treatments helped some, but not enough to continue going to therapy, so I now do the home treatments from time to time, but I am unsure if it is helping or my brain is just healing some, it is so hard to tell. I had been to doctor after doctor and not one of them questioned my long term benzo use, in fact one doc told me that I was taking a small dose and it wouldnt hurt me at all! Boy was he wrong!!!

 

It is nice to be understood, thank you! Have a great day! Maggie

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Hi Maggie,

I can relate to everything you're saying! I, too, have tinnitus, and I, too, was told by a number of the doctors I saw that my benzo dose was "such a small dose" and, therefore, shouldn't have been causing me any problems. That was after I'd seen a number of doctors, had a fair amount of testing and was getting pretty sure that my dizziness was caused by the medication and not something else, e.g. a tumour, anxiety, eye problems, ear problems, etc. I also did a lot of vestibular rehabilitation but I didn't get any relief from it. I do think, though, that people should probably get assessed for their dizziness to ensure that nothing else might be going on -- simply because there are just so many possible causes of dizziness.

 

If you haven't already done so, please check out the first few pages of this thread. The first page includes a list of terms that fellow BBs have used to describe their disequilibrium sensations. As well, within the first few pages, I put up a number of links that might be useful or interesting to you. It's important to know that benzodiazepines, as well as antihistamines and anticholinergics, are medications that are known as "vestibular suppressants", and they can interfere with proper balance when taken long term. I've put this link up many times, but I think it's a really good one with regards to understanding what might be going on when someone takes a benzo for too long:

 

https://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-medication 

 

Anyway, if you're tapering already, then you're on the right track. I wish you well with that and hope you have a smooth ride down.  :)

 

 

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  • 2 weeks later...

Hi to my dizzy friends,

 

I’m just checking in to see what’s happening with people and to report on my situation. I’m at 51/2 years out from the last dose of a Benzos. I still have some withdrawal symptoms, the worst being  boaty.  I am able to walk, but not long distances because my back muscles will begin to cramp up. I think that happens because my body is trying to balance me.  If I have to walk a distance without a railing or something to hold onto I use my 4 wheel walker. I also use it in the house because it allows be to move faster and prevents the muscle cramping. I have boatiness 24/7. Only time I don’t feel it is if Im lying down, but If I turn over I’ll feel it.  It’s less when sitting, but sometimes it causes me to rock. I’m lucky because I can drive and don’t feel it at all. Wonder why?

 

I went to the doctor for my yearly checkup and he said he thought I had postural tremor. He sent me to a neurosurgeon to see if I qualify for deep brain stimulation.  Unfortunately, I don’t. Tremors can occur in various ways not just shaking hands. Apparently, deep brain stimulation cures 90% of them.

The surgeon told me many tremors can be brought on by medications or withdrawing from them. I really had my hopes up.  The surgeon did some quick research and found people in protracted withdrawal can have symptoms that last 5, 7 even 10 years, but eventually we get better. I sure want to believe that.

 

The good news is the terrible burning I felt on my shins is now almost gone. So things do get better.

Still suffer from insomnia. I do sleep just at the wrong time and for short periods of time. I’m thankful that I no longer work.

 

Thank you Lapis for keeping this group going. It’s helps me to know you’re here and understand what I’m going through.

 

Korbe

 

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Hi Maggie,

I can relate to everything you're saying! I, too, have tinnitus, and I, too, was told by a number of the doctors I saw that my benzo dose was "such a small dose" and, therefore, shouldn't have been causing me any problems. That was after I'd seen a number of doctors, had a fair amount of testing and was getting pretty sure that my dizziness was caused by the medication and not something else, e.g. a tumour, anxiety, eye problems, ear problems, etc. I also did a lot of vestibular rehabilitation but I didn't get any relief from it. I do think, though, that people should probably get assessed for their dizziness to ensure that nothing else might be going on -- simply because there are just so many possible causes of dizziness.

 

If you haven't already done so, please check out the first few pages of this thread. The first page includes a list of terms that fellow BBs have used to describe their disequilibrium sensations. As well, within the first few pages, I put up a number of links that might be useful or interesting to you. It's important to know that benzodiazepines, as well as antihistamines and anticholinergics, are medications that are known as "vestibular suppressants", and they can interfere with proper balance when taken long term. I've put this link up many times, but I think it's a really good one with regards to understanding what might be going on when someone takes a benzo for too long:

 

https://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-medication 

 

Anyway, if you're tapering already, then you're on the right track. I wish you well with that and hope you have a smooth ride down.  :)

 

This is so sad, because all my head presure and dizziness go away whenever I take an antihistamine (no matter wish one) and only then I’m able to sleep... so I don’t now anymore if I’m doing wrong by taking antihistamines every day 😪

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Hi lunaliberiana,

I think you should be quite careful about using antihistamines daily. They, too, have a range of side effects (including dizziness), and yes, they are known as "vestibular suppressants", and as such, are not meant for daily use. If you Google the phrase "vestibular suppressant", you should find other articles on that topic.

 

 

 

 

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Hi to my dizzy friends,

 

I’m just checking in to see what’s happening with people and to report on my situation. I’m at 51/2 years out from the last dose of a Benzos. I still have some withdrawal symptoms, the worst being  boaty.  I am able to walk, but not long distances because my back muscles will begin to cramp up. I think that happens because my body is trying to balance me.  If I have to walk a distance without a railing or something to hold onto I use my 4 wheel walker. I also use it in the house because it allows be to move faster and prevents the muscle cramping. I have boatiness 24/7. Only time I don’t feel it is if Im lying down, but If I turn over I’ll feel it.  It’s less when sitting, but sometimes it causes me to rock. I’m lucky because I can drive and don’t feel it at all. Wonder why?

 

I went to the doctor for my yearly checkup and he said he thought I had postural tremor. He sent me to a neurosurgeon to see if I qualify for deep brain stimulation.  Unfortunately, I don’t. Tremors can occur in various ways not just shaking hands. Apparently, deep brain stimulation cures 90% of them.

The surgeon told me many tremors can be brought on by medications or withdrawing from them. I really had my hopes up.  The surgeon did some quick research and found people in protracted withdrawal can have symptoms that last 5, 7 even 10 years, but eventually we get better. I sure want to believe that.

 

The good news is the terrible burning I felt on my shins is now almost gone. So things do get better.

Still suffer from insomnia. I do sleep just at the wrong time and for short periods of time. I’m thankful that I no longer work.

 

Thank you Lapis for keeping this group going. It’s helps me to know you’re here and understand what I’m going through.

 

Korbe

 

Hi Korbe,

Sorry for the delayed response. I meant to respond earlier, but it's been a rather tough period of time for me. Anyway, I'm so glad to know that your shins are better. Do you think that the walker has something to do with, i.e. because you're not straining so hard while walking? Or is it something else?

 

I'm so curious as to what the doctor checked when he said that people in protracted withdrawal eventually get better. Do you know? I'd love to have a look at whatever it was that he was reading. That's very heartening, though. We need more of that kind of info -- especially from a doctor!

 

Take care.  :-*

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Yes, Korbe, I'm also curious to know what research the doctor was looking at. I would love to quote it to my own doctor!
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Geez, I could use that info today. Really dizzy, wobbly, boaty. I'm doing my best to breathe and stay calm, but man oh man, it's hard!  :(
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Hi Maggie,

I can relate to everything you're saying! I, too, have tinnitus, and I, too, was told by a number of the doctors I saw that my benzo dose was "such a small dose" and, therefore, shouldn't have been causing me any problems. That was after I'd seen a number of doctors, had a fair amount of testing and was getting pretty sure that my dizziness was caused by the medication and not something else, e.g. a tumour, anxiety, eye problems, ear problems, etc. I also did a lot of vestibular rehabilitation but I didn't get any relief from it. I do think, though, that people should probably get assessed for their dizziness to ensure that nothing else might be going on -- simply because there are just so many possible causes of dizziness.

 

If you haven't already done so, please check out the first few pages of this thread. The first page includes a list of terms that fellow BBs have used to describe their disequilibrium sensations. As well, within the first few pages, I put up a number of links that might be useful or interesting to you. It's important to know that benzodiazepines, as well as antihistamines and anticholinergics, are medications that are known as "vestibular suppressants", and they can interfere with proper balance when taken long term. I've put this link up many times, but I think it's a really good one with regards to understanding what might be going on when someone takes a benzo for too long:

 

https://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-medication 

 

Anyway, if you're tapering already, then you're on the right track. I wish you well with that and hope you have a smooth ride down.  :)

hi so i'm also suffering from vertigo and balance issues as well as visual  issues and dizziness... I also take an antihistamine, gravol for sleep you think  that could add to the mess?

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Hi bonty,

I think it's risky to use Gravol or any medication that makes you sleepy, because it might just prolong the whole affair. 

 

Here's the info from the Vestibular Disorders Association link I shared above:

 

 

 

Can Medication Help Me Feel Better?

 

The use of medication in treating vestibular disorders depends on whether the vestibular system dysfunction is in an initial or acute phase (lasting up to 5 days) or chronic phase (ongoing).

 

During the acute phase, and when other illnesses have been ruled out, medications that may be prescribed include vestibular suppressants to reduce motion sickness or anti-emetics to reduce nausea. Vestibular suppressants include three general drug classes: anticholinergics, antihistamines, and benzodiazepines. Examples of vestibular suppressants are meclizine and dimenhydinate (antihistamine-anticholinergics) and lorazepam and diazepam (benzodiazepines).

 

Other medications that may be prescribed are steroids (e.g., prednisone), antiviral drugs (e.g., acyclovir), or antibiotics (e.g., amoxicillin) if a middle ear infection is present. If nausea has been severe enough to cause excessive dehydration, intravenous fluids may be given.

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.

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Hi bonty,

I think it's risky to use Gravol or any medication that makes you sleepy, because it might just prolong the whole affair. 

 

Here's the info from the Vestibular Disorders Association link I shared above:

 

 

 

Can Medication Help Me Feel Better?

 

The use of medication in treating vestibular disorders depends on whether the vestibular system dysfunction is in an initial or acute phase (lasting up to 5 days) or chronic phase (ongoing).

 

During the acute phase, and when other illnesses have been ruled out, medications that may be prescribed include vestibular suppressants to reduce motion sickness or anti-emetics to reduce nausea. Vestibular suppressants include three general drug classes: anticholinergics, antihistamines, and benzodiazepines. Examples of vestibular suppressants are meclizine and dimenhydinate (antihistamine-anticholinergics) and lorazepam and diazepam (benzodiazepines).

 

Other medications that may be prescribed are steroids (e.g., prednisone), antiviral drugs (e.g., acyclovir), or antibiotics (e.g., amoxicillin) if a middle ear infection is present. If nausea has been severe enough to cause excessive dehydration, intravenous fluids may be given.

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.

this dizziness has been going on for 3 weeks now and all the other sxs that I mentioned... how  do you cope with this? I'm going out in the afternoon its a challenge I live alone and worried but I try to be careful.. also extremely tired but I can't be home all the time... I want to add that  little less than a month I did a reduction on my AD thinking i could reduce both drugs at a time , I did a 10%  and recently undosed  to see if that would help my sxs , like you, I also have a history of abrupt changes of ADs which led to ssri wd and  unfortunately took consistently klonopin which made matters worst... in another site they said I should reduce the ssri first then benzo to reduce insomnia as its more activating... but i'm debating... my cns is so sensitive now .. I may reduce more of the benzo and then go to the ssri taper , what do you think?

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Hi bonty,

I'm certainly no expert, but trying to reduce both a benzo and an SSRI at the same time might be asking a bit too much of your body. Both of those meds can cause the same type of dizziness -- both while on them and while coming off. I got off my benzo first because it was the most likely culprit causing my ongoing dizziness. It's a vestibular suppressant, and once I learned how it worked, I just wanted it out of my body. But I learned that the SSRI was also a problem, and I knew I'd need to taper off it as well. A psychiatrist had prescribed the SSRI, thinking it might help my dizziness. NO. Absolutely NOT. It likely contributed to the problem. Any medication that affects the neurotransmitters in the brain can affect balance, because so many are involved in the vestibular system.

 

Whether there's any clear ideas on which medication to taper first, I'm not sure. I just did what I had to do. I wasn't on BB at the time, although I'd already found a number of threads on dizziness and benzos from BB and realized it was a likely explanation for my situation. It wasn't until much later that I joined BB so that I wouldn't be alone with the medication-induced dizziness.

 

Maybe you can put the word out there on other parts of BB and see whether there's any agreement about which med to taper first. Doing both at once might just be a bit too much, but it's up to you.

 

Either way, take care and make sure you're safe. Falling is obviously a serious risk, so do what you need to do to stay safe.

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Hi bonty,

I'm certainly no expert, but trying to reduce both a benzo and an SSRI at the same time might be asking a bit too much of your body. Both of those meds can cause the same type of dizziness -- both while on them and while coming off. I got off my benzo first because it was the most likely culprit causing my ongoing dizziness. It's a vestibular suppressant, and once I learned how it worked, I just wanted it out of my body. But I learned that the SSRI was also a problem, and I knew I'd need to taper off it as well. A psychiatrist had prescribed the SSRI, thinking it might help my dizziness. NO. Absolutely NOT. It likely contributed to the problem. Any medication that affects the neurotransmitters in the brain can affect balance, because so many are involved in the vestibular system.

 

Whether there's any clear ideas on which medication to taper first, I'm not sure. I just did what I had to do. I wasn't on BB at the time, although I'd already found a number of threads on dizziness and benzos from BB and realized it was a likely explanation for my situation. It wasn't until much later that I joined BB so that I wouldn't be alone with the medication-induced dizziness.

 

Maybe you can put the word out there on other parts of BB and see whether there's any agreement about which med to taper first. Doing both at once might just be a bit too much, but it's up to you.

 

Either way, take care and make sure you're safe. Falling is obviously a serious risk, so do what you need to do to stay safe.

Thank you for your reply, it was an experiment , not planning on tapering both meds. at the same time...I know some people do it and succeed I guess not me. I'm thinking the change I did increase my dizziness  not sure... anyway are you still suffering from these sxs? I appreciate you getting back to me....

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Hi bonty,

A number of the symptoms I had at the beginning of my post-withdrawal period have gone away, but the disequilibrium/boatiness has remained. Yup, it's been a very long-standing symptom for me.  :( I'm guessing it may have to do with a number of factors -- the combination of medications I was on, the length of time I was on them, genetics, hormonal changes, etc. Of course, I know it's impossible to know for sure. Everyone's situation is different.

 

I haven't taken any benzos, SSRIs, vestibular suppressants  (e.g. no antihistamines or anticholinergics), antibiotics, etc., in the years since my withdrawals. However, I did have to take some ibuprofen and acetaminophen for a fracture I sustained in my foot (yes, because of the dizziness), and I can't say if that had any effect at all. I know I couldn't have gotten through that slow-healing fracture without some help, but there was no way I was going to take any opioids.

 

Hopefully, in your case, it will all be short-lived. For lots of people, it is. Take care!

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Hi Lapis2, I'm sorry about your foot, this really sucks... and the persistence in the disequilibrium/boatiness feeling... Can these sxs be acompaned by low blood pressure, low sugar ? I feel faint at time as well... is this part of the vestibular system? being down graded
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It's hard to say. For sure, people around here have blood pressure and blood sugar issues, but those might be caused by other mechanisms in the body, i.e. non-vestibular ones. Blood pressure is more about circulation, and blood sugar issues can be related to digestion. There are a few different kinds of dizziness, so when people say, "I'm dizzy," they might mean different things.

 

For example:

-Vertigo is spinning, e.g. either you or your surroundings, as in Benign Paroxysmal Positional Vertigo.

-Disequilibrium is an unbalanced sensation, which is what I have and many other benzo people have. People use different descriptions, but mine is a floaty-boaty, push-pull sensation.

-Syncope or presyncope, which mean fainting or lightheadedness.

 

Dizziness can be caused by many different things, so if you're unsure, it's worthwhile to get it checked out by a doctor. I had many different kinds of testing when I first became dizzy, e.g. visual, auditory, vestibular, neurological, psychological (e.g. anxiety), etc.

 

https://www.verywellhealth.com/when-dizziness-is-serious-2488861 

 

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Hi All,

I came across this article a bit earlier today, and it's worth checking out -- especially the first section, which is on Mal de Debarquement Syndrome. One of the doctors I saw early on mentioned that my symptoms resembled this syndrome. I'll put the link in here, plus the first section of the article. Note the mention of benzodiazepines and SSRIs as possible treatments, which I find rather worrisome. Both of those medications can actually CAUSE this type of dizziness. However, I like the part where it says that this problem "will usually go away on its own". Yes!

 

Uncommon Causes of Chronic Dizziness

 

https://www.verywellhealth.com/uncommon-causes-of-chronic-dizziness-2488854 

 

 

Many forms of dizziness can occur suddenly, causing disorientation for minutes, hours, and even days, before disappearing just as quickly. Oftentimes, we will have no idea why they happened, and the experience itself will usually have no long-term consequence.

 

Others types are far more distressing. They may be persistent and require ongoing management for a person to function with even relative normalcy. While many such cases have no clear cause, there are certain medical conditions in which chronic dizziness is, in fact, characteristic.

 

Mal de Debarquement Syndrome

Mal de debarquement, which means "sickness of disembarkment" in French, was originally described by sailors who, after having come ashore, felt as if they were still aboard a rocking ship.

 

The sensation is quite common in perfectly healthy people who have just stepped off a boat or plane. For most, the condition will resolve in a day or so.

 

For others, however, it can last for months and even years. The persistent rocking sensation can be made worse when in confined passageways (such as a grocery store aisle) or viewing contrasting movements (such as turning the head while crossing a busy intersection).

 

No one quite knows why mal de debarquement persists in some people, although it is believed to be linked to anxiety, migraines, and certain hormonal changes. While it may take time, the disorder will usually go away on its own.

 

To date, no study has offered a qualifiable treatment. Some doctors have anecdotally found benefits in using Klonopin (clonazepam), a sedative, or selective serotonin reuptake inhibitors (SSRIs) used to treat depression and anxiety. Motion sickness drugs such as meclizine, scopolamine, and promethazine appear to be less effective.

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Hi Dizzy Buddies,

I just posted an article in the Benzos In The News section regarding medications that can cause dizziness. Have a look here:

 

http://www.benzobuddies.org/forum/index.php?topic=224430.0

 

Here are the key sections of the article:

 

When Dizzy Means Disequilibrium

 

Some people say they are dizzy when they mean that they are clumsy. Sometimes this clumsiness can make it difficult to even walk correctly. Medications like some antiepileptics can affect the workings of the cerebellum—the part of the brain that is responsible for coordinating our movements. Other potential culprits include benzodiazepines or lithium. Lithium, in particular, has what is known as a narrow therapeutic window, meaning that there is just a small difference between a dose that doesn't actually treat someone's problem and a dose that causes new side effects. For this reason, people on lithium should have a blood level tested frequently to ensure that the blood concentration of the medication is within a safe limit.

 

When Dizzy Means Vertigo

 

Vertigo is a false sense of movement, like most of us have had after stepping off a merry-go-round or dizzying amusement park ride. Vertigo can either result from a problem with our inner ear, the nerve between the inner ear and the brainstem, or the brain itself. Medications like antihistamines, benzodiazepines, or anticholinergics can suppress the vestibular system and may do so in a way that causes dizziness or imbalance. The antibiotics known as aminoglycosides, such as gentamicin or tobramycin, can have a toxic effect on the inner ear, leading to permanent vertigo. Other drugs that can be toxic to the vestibular system include quinine, certain chemotherapies, salicylates like aspirin, and loop diuretics like furosemide.

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I think I have the winning trifecta sometimes. My tilt a whirl life comes from chronic high levels of anxiety, allergies, benzo use, and TMJ/eustachian tube dysfunction.  Yay for me, right? The thing I have to tell myself over and over and over again is that the only way out is through. Life after benzos is going to be sweet, but getting there takes true grit...daily.
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I think I have the winning trifecta sometimes. My tilt a whirl life comes from chronic high levels of anxiety, allergies, benzo use, and TMJ/eustachian tube dysfunction.  Yay for me, right? The thing I have to tell myself over and over and over again is that the only way out is through. Life after benzos is going to be sweet, but getting there takes true grit...daily.

 

Well put, Joy. Yes, I sometimes tell myself that same thing: "The only way out is through," but it sure feels like going through some kind of meat grinder or house of horrors. "Tilt-a-whirl" is an excellent descriptor, though, and I'd add it to my first page list of words, if I could. That's where I put all of the descriptive terms that BBs were using to talk about their dizziness symptoms.

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Hi guys, I'm having intense dp/dr + dizziness ,vertigo and visual distortion, blurry vision balance issues for almost a month, should I be worried as it is freaking me out big time

not to mention the exhaustion, also not sleeping well...

 

anyone been here for a long stretch? this is so annoying to say the least, haven't been to the dr.  yet.... this really sucks ,damn stupid drs. :'(

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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.

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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 ...

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