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

[Guest [...]]

Hi 2200,  your husband might have BPPV dizziness. I had it 3 weeks ago and symptoms you descibed fits to it. There is easy manual treatment for it. In my case it disappeared in couple of days after doing the manual treatment. Well, Lappis is much more experienced in this but this is my try to help you so you might want to check treatment, I linked some material:

 

https://www.google.fi/search?source=hp&ei=xH-VWqP-LsG4sQH5hoCwCw&q=bppv+maneuver&oq=bppv+&gs_l=mobile-gws-hp.1.2.0l3j0i203l2.1928.5740..9198...0....310.1137.0j4j1j1..........1..mobile-gws-wiz-hp.....3..35i39j0i131j0i10.bGX6G69l6f4%3D

 

Take care! T.

 

 

 

Thankyou for the info Thomas!I will definitely check this out!I know he would appreciate it too!

 

I hope you are doing better?

[[La...]]

Hi Lapis!Just wanted to drop in to say hi,and see how you and the other dizzy buds are doing?Any good news with your dizziness level,and your foot healing,Lapis?

 

I am reading Don Killian's book,Home and Dry.It is really good,and hard for me to put down.I feel so emotional reading it,and this long painful road we have been on.I found it so comforting to read how someone else who went through so many of the hard symptoms we all have,could put it into words so well.

 

He also had some drinking problems,but the side effects from the benzos and other meds he took sure hits home with me.I also had tried antidepressants years ago and had some bad side effects,so it all hits home!

 

I also wanted to mention that my husband woke up one morning dizzy!He said he only gets it when he starts to lie down or when he first gets up.He got checked out and the doc thought he had an ear infection,so he took antibiotics but he still feels dizzy.He is taking quite a few meds,and a new one he got prescribed is a daily aspirin.Maybe that triggered it,I just don't know,it maybe could be ear crystals,etc.She told him to come back and be checked again if the antibiotics didn't stop it,so the doctor may find a new treatment for him.

 

I think he is understanding more of how I have been feeling for so long,as he got a bit scared by it.I am glad he can get how I have been feeling being dizzy,but sure hate to see him suffer from it too.Wouldn't wish this on anyone!

 

I hope you are doing better everyone!I sure wish spring would show up around here,so tired of winter!

 

Hi 2200,

Sorry for the delayed response, but I had a few things to deal with yesterday, not the least of which was a very swollen fracture foot. I assume that hormonal changes account for that, but I can't be sure. I was very dizzy as well, so the combination created a particularly brutal experience. I had to lie down and elevate my legs for an hour, and then I just had to get through what was left of the day. I pray I don't have to deal with such things for very much longer.  :'(

 

This morning, I looked up the book you mentioned, but I didn't find it. I know Don wrote a book, but the one I found had a different title -- "From Fear to Freedom". I did find a book called "Home and Dry", but it had a different author (Sarah Smith). Would you mind checking the info again please, because I was thinking I might want to get the book? It might not be available here in Canada, but I'll see. Anyway, I'm glad you're enjoying it. I've only read Baylissa's books at this point. Both were quite good.

 

How is your husband doing now? Any changes? When my mom was having a bit of dizziness not long ago, she said, "I'm so sympathetic! All I can do is lie down!" Thankfully, it passed, but I do think it gave her a level of empathy that she didn't have beforehand. I certainly don't wish dizziness on anyone, but I really do think that few people have a sense of what it's like to feel like your body is constantly in motion, even though you know it's not. In your husband's case, did they look into the combination of medications he was given? Sometimes the interaction between two (or three or four!) meds that causes the problem.

 

Take care!

 

You mentioned spring, and here in southern Ontario, we're having a bit of a heat wave in February! It feels like spring! I'm sure we're in for more cold weather and snow, but it's strangely warm. I mean, it really shouldn't be this warm now, and of course, I think about global warming. It messes with the trees and the animals and the birds. One year, the temperatures got warm a bit too early, and it really affected the apple and magnolia trees -- and probably others. 

[[Ho...]]

Why is it that I feel fine in the mornings but get the dizziness, blurry vision and sinus like symptoms after I eat my first meal or if I have been up for a few hours?

 

I always thought that the dizziness is attributed to benzo withdrawals affect on your sinuses.

[[La...]]

Hi Hootie,

Very good question! I'm not sure. Is that new or different for you? If I'm having a dizzy day, the symptoms stay with me throughout the day. If I'm having a less dizzy day, it tends to be that way for the whole day. Maybe others around here can chime in with their experiences. I've never had any sinus issues related to my dizziness, but I did have some visual issues early on in my withdrawal, but they have resolved.

 

Dizziness has to do with the vestibular system, which is located in the ear. There are various parts to it (semicircular canals, saccule, utricle, etc.), but of course, it's a central nervous system function, which is affected by neurotransmitters. Both vision and proprioception are also involved with balance, so a problem with any one of those three things can affect one's balance.

 

Sinuses primarily affect breathing, rather than balance. By the way, do you see any connection between your sinus symptoms and what you ate? Before I cut dairy out of my diet (many years ago), I had a lot of upper respiratory problems. Once I cut out dairy, much of that settled down. I'm not sure if others find the same thing, but other foods can be congesting too.

 

Anyway, I hope others will jump in here with their thoughts and experiences.

[[Ho...]]

I cut dairy out of my diet a few days ago so I'll have to wait a bit before I can figure out if it affects me or not.

 

The dizziness is a fairly new symptom. I had it terrible for months 3 and 4 and then it went away. Now I'm a year off and it's been back since month 10. I was having great windows in December until I had soup with alcohol in it. I didn't realize there was alcohol in it. I haven't been the same since but I had my first full day window last Sunday which was kind of encouraging. Secondly, I had a cold in mid January and that seems to have made the dizziness twice as bad.

 

In both my terms of dizziness I noticed some kind of relation to my sinuses. My ENT said my sinuses are clear. I know benzos affect sinuses so I'm sure that's what's caused this.

 

If my dizziness and blurred vision left then I'd probably feel about 80% normal. Wish I found a way to get rid of them because it's terrible living with it daily.

[[jo...]]

I've been using Mack's soft foam earplugs to help me sleep at night, and they seem to be helping. I'm worried, though, that they're contributing to my balance problems. Is that a legitimate concern?

 

FWIW, I have an ENT appt. in a few weeks and hope to get some help with my am/pm vertigo, which has gotten worse in the past few weeks. I've also developed a cough since last week. All that is in addition to the congestion I've felt in my throat for months.

 

I think I could be doing better but all of these balance sxs are making my DR even worse, and at different times of the day, too.

[[La...]]

Joantics, I'm glad you're going to see an ENT. It's definitely worthwhile to get things checked out. As far as ear plugs go, I doubt they'd affect balance. All they do is block sounds from the outside. I only use them if our fire alarm goes off. Otherwise, wearing ear plugs while having tinnitus would be really unpleasant. All I'd hear would be that high-pitched hissing in my left ear!

 

Bear in mind that sometimes an upper-respiratory cold can affect the ears, so again, it's another good reason to see what the doc has to say. If things check out okay, then of course, it can all be down to benzo dizziness. The hard thing is that there's no definitive test to say, "Yes, it's this." It's more about eliminating other possibilities that don't fit the picture of symptoms, timing, etc.

[[jo...]]

Lapis2, strangely enough, I don't notice my tinnitus any more or any less with the earplugs, and wearing them actually helps lessen the sound/sensation of my blood pressure during the night. It doesn't make sense to me, but neither does anything else right now.

 

Is anyone else here struggling with DR?

[Guest [Fu...]]

Yes, I have DP/DR very bad and I think it's very much connected to the dizzy/dissociated feeling I constantly have.

[[...]]

Hi Dizzy Support Group!

I haven't been on here in a while because I am 1 year and 8 months off (a lot) of Ambien, and I'm almost better! I was very, very dizzy/drugged/dp/dr....unexplainable horribleness for almost two years before I felt like I could even function. I had hyperthyroidism which led to me being put on lots of drugs, because they couldn't figure out what was wrong. I never "abused" them, but it took a ton to make me sleep with my thyroid spewing out hormones. I was still quite dizzy at the end of December, and even had a really bad wave. I was crying and everything and thought for sure it was all coming back. But, at around 19 months my dizziness FINALLY let up....and I say dizziness, but it was mixed with all sorts of strangeness. I usually describe it as I was on a tiny bit of acid, which I'm assuming is how it felt. I feel like I probably have one or two more mountains to climb. I know I'm not totally out of the woods, but most of the time I feel great.

I was pretty much kept alive by reading the posts on this web site. I don't know what would have happened without it, and I've never been on anything like it before. I have two small children, and I'm so thankful to be coming out the other side of this so I can be a mommy again. I am working coordinating a school garden (just took over in January)! I was terrified! If somebody had told me a year ago I'd be able to do this now I would have cried and thought it was a mean joke. I went to the depths, and I want you all to know you're time will come too. This nightmare will be over. Someday, when all of the little spats of dizzy/disconnectedness are over, and I feel like I've climbed my last mountain I will write a success story.

This group in particular helped me, Lapis, especially your posts. So, I wanted to check in and let you guys know.

Take care, and just get through it any way you can.

E

[[La...]]

Fabulous post, erp8! Congratulations! And thank you SO MUCH for coming back to share your good news with us. It means so much to everyone here to read a story about a positive outcome. So many people just disappear, and then we don't know if they ever got better. Well, I can't tell you how happy I am to know that you're doing better and that you can now do things that you want and need to do -- especially as a mom! Fantastic!

 

Enjoy the school garden, too! I can only assume that you're living somewhere warm, since our gardens are still frozen. We're north of the 49th parallel, and the rule usually is to wait until much later in the season or we'll freeze our vulnerable little plants.

 

Please do drop in now and then, and let us know how everything is working out. Take good care!  :-*

[[La...]]

Here's a recent study to check out. It's called "Prevalence, aetiologies and prognosis of the symptom dizziness in primary care - a systematic review".

 

https://www.ncbi.nlm.nih.gov/pubmed/29458336

 

CONCLUSION:  There is a broad variety of possible underlying diseases for the symptom dizziness. There exist only few methodologically sound studies concerning aetiology and prognosis of dizziness.

 

So, there are lots of reasons that people are dizzy and very few decent quality studies to explain the reasons why or to follow up on who gets better. Fab!

 

 

[[La...]]

I feel a bit like this:

 

http://anxiousinklings.com/index.php/2018/02/03/somethings-afoot/ 

 

And a bit like this:

 

http://anxiousinklings.com/index.php/2018/01/10/witchs-brew/ 

 

And a bit like this:

 

http://anxiousinklings.com/index.php/2017/12/26/oh-benzo-brain-oh-benzo-brain-lovely/ 

 

And a bit like this:

 

http://anxiousinklings.com/index.php/2017/11/27/growing-pains/ 

 

And a bit like this:

 

http://anxiousinklings.com/index.php/2017/10/28/spin-cycle/ 

 

But mostly like this:

 

http://anxiousinklings.com/index.php/2017/10/20/not-kansas-anymore/ 

 

Aren't these awesome??!! These drawings were done by one of our very talented BBs, and I just can't believe how amazingly well his benzo-brain is working! Despite what he's going through, his creative and cognitive skills seem to be in excellent shape. Perhaps he feels otherwise, but really, these pieces of art -- these expressions of pain and fear and despair -- are triumphs of humour and courage. I guess he adds another drawing whenever the feeling strikes. Here's the link to the website, if you want to check it out:

 

http://anxiousinklings.com/ 

 

I considered purchasing a print, but I don't think he ships to Canada. I just love that last one! It fits so well, doesn't it?! Fantastic!

 

 

[[Ko...]]

Hi Dizzy Buddies,

 

Just checking in. I just started my 52nd month. That really seems long enough don’t you think.

My symptoms are the same with burning shins and boatiness.  The Quell has solved the burning pain.

Wow what a relief. I hope others of you have tried it because it really does work. The boatiness is slightly better. On a scale of 2 to 10 I’m usually around a 4. Occasionally I’ll have a 7 or 8 but just for a day or two.  I don’t have to rock side to side when I’m sitting like I used to, so that’s a very noticeable change. When walking it feels like Im walking on a trampoline, but I can stand in one place without feeling much motion.  If I have to walk long distances without any support I still use my 4 wheeel walker.  If I have someone to walk with that I can hang onto then I’m ok without it.

 

Still haven’t gone to the gym. I know I can do it so I just need to make myself go. Not sure what Im afraid of.  Perhaps it’s havong to explain to people where I’ve been and what’s still wrong with me.

Our story is so hard to understand and can’t be explained in a few sentences. Any suggestions would be appreciated.

 

Lapis I’m so sorry you’re still struggling with that broken foot.  That must awful to have to deal with that on top of everything else.  I hope it gets well soon.

 

Best

Korbe

[[La...]]

Hi Dizzy Buddies,

 

Just checking in. I just started my 52nd month. That really seems long enough don’t you think.

My symptoms are the same with burning shins and boatiness.  The Quell has solved the burning pain.

Wow what a relief. I hope others of you have tried it because it really does work. The boatiness is slightly better. On a scale of 2 to 10 I’m usually around a 4. Occasionally I’ll have a 7 or 8 but just for a day or two.  I don’t have to rock side to side when I’m sitting like I used to, so that’s a very noticeable change. When walking it feels like Im walking on a trampoline, but I can stand in one place without feeling much motion.  If I have to walk long distances without any support I still use my 4 wheeel walker.  If I have someone to walk with that I can hang onto then I’m ok without it.

 

Still haven’t gone to the gym. I know I can do it so I just need to make myself go. Not sure what Im afraid of.  Perhaps it’s havong to explain to people where I’ve been and what’s still wrong with me.

Our story is so hard to understand and can’t be explained in a few sentences. Any suggestions would be appreciated.

 

Lapis I’m so sorry you’re still struggling with that broken foot.  That must awful to have to deal with that on top of everything else.  I hope it gets well soon.

 

Best

Korbe

 

Hi Korbe,

Thanks for the update! 4 out of 10 sounds pretty good as far as dizziness goes, so that's great news! And I'm glad your shin pain has settled down a bit too. You must be really pleased.

 

What if you plan to go to the gym with a buddy to start with? Maybe that could get you over the hump and make you feel a bit protected when it comes to reactions of others. The truth is that you don't have to tell them much. It's totally up to you. You can say, "It's personal," or "I've been dealing with a long illness, and I'm slowly getting back into shape." Or, really, you can just say hello and be pleasant but say you'd rather not talk about it. I hope people would be kind enough to accept that you want privacy regarding your health issues.

 

I've thought a bit about that too, and I think I'll only know what I want to say when I get to that point. I might just say I had a balance problem and a foot problem, and leave it at that.

 

Thanks for your good wishes regarding my foot, Korbe. I had a follow-up Xray yesterday, and it finally appears that the bone has knitted together. I'm scheduled for a CT scan for next week, just to be sure, but at this point, the doctor has said that it's okay to do regular movement with it. I've been doing some toe and ankle exercises recently, but I'll start to push more with those things, and I'll also do calf (gastroc, soleus, Achilles) stretches to get the flexibility back. It has taken way too long for this to heal, but that's what happens when a dizzy, skinny chick in her 50s has low bone density and takes a wrong step. It's pretty tough to do weight-bearing exercises and proper walking when you feel like you're on a boat 24/7. Bad catch-22!

 

Take care, Korbe and stay in touch!

[[La...]]

Here's a recent study on Mal de Debarquement Syndrome. I'll post both the abstract and the full article.

 

"Hypothesis: The Vestibular and Cerebellar Basis of the Mal de Debarquement Syndrome"

 

"The Mal de Debarquement syndrome (MdDS) generally follows sea voyages, but it can occur after turbulent flights or spontaneously. The primary features are objective or perceived continuous rocking, swaying, and/or bobbing at 0.2 Hz after sea voyages or 0.3 Hz after flights. The oscillations can continue for months or years and are immensely disturbing. Associated symptoms appear to be secondary to the incessant sensation of movement. We previously suggested that the illness can be attributed to maladaptation of the velocity storage integrator in the vestibular system, but the actual neural mechanisms driving the MdDS are unknown...."

 

https://www.ncbi.nlm.nih.gov/pubmed/29459843 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5807657/ 

[[La...]]

BenzoBuddies Happy Hour:

 

http://anxiousinklings.com/index.php/2018/03/06/drinks-on-me/ 

[[Aj...]]

VAArtist is a complete genius!

 

Hi Ajusta,

Balance is a central nervous system issue, and it depends on three elements -- vision, proprioception and the vestibular system. All three things must be providing the same messages via the cerebellum at the same time, or you wil feel dizzy. So, when you say that it might be "muscular", I'm not quite sure what you mean. Proprioception has to do with how you feel your body in space, and it depends on the function of the legs and feet, and feeling the ground. Do you have some issue with sensation in those areas?

 

Here's a link to info about proprioception:

 

https://en.wikipedia.org/wiki/Proprioception

 

The vestibular system can be affected by many medications, including benzodiazepines, antidepressants, antihistamines, anticholinergics, antipsychotics, antibiotics, analgesics, and a number of others. Depending on how they work in the body, they may cause issues with hearing and/or balance. So, it's definitely worthwhile to look at which medications you've taken and how they might have contributed to any vestibular issues you might be having.

 

Unfortunately I know rather alot about propiocepion because of ME/CFS stuff.

 

It's hard for me to explain abot the usclular stuff in relation to my sense of disequilibrium.

 

My head feels like it is 'bobbing' and trying to lift up off of my body but for me this is connected to the muscles of my neck and head.The muscles are tight but they also go too 'springy' as if they are rying to expand after years ofbeingkept weak from diazepam but because of degeneration in spine it feels like my neck can't lengthen properly so the muscles don't have enough room to expand. I can't find a way to describe it properly.

 

As far as bodily stuff goes I tink I am having more problems with interoception that proprioception these days.

[[La...]]

Ajusta, have you checked out the first page of this thread? There are some descriptive words that BBs use to describe their issues with balance. Maybe something on that list will speak to you. I collected the list over time, while reading many posts of people dealing with disequilibrium and dizziness.

[[La...]]

This study is about ototoxicity, which refers to medications that can damage hearing or balance. There's a huge list of medications that fall into that category, including, of course, benzodiazepines.

 

"Ototoxicity: A Challenge in Diagnosis and Treatment"

 

https://www.ncbi.nlm.nih.gov/pubmed/29471610

 

And here's a bit of good news about the effects of balance training in older adults:

 

"Balance Training Reduces Brain Activity during Motor Simulation of a Challenging Balance Task in Older Adults: An fMRI Study"

 

https://www.ncbi.nlm.nih.gov/pubmed/29472847

 

[[Th...]]

Tanks again about the link Lapis!

 

I met my physical therapist yesterday and discussed about my BPPV type of dizziness. Shet told me wo tings about it with her more than 20 years experience treating BPPV patients.

 

1) she said that she have noticed that many time BPPV patients have been laying in the bed because of the reason or the other before geting BPPV so she said that laying long time in bed triggers BPPV. This is my case as well beause I have been quite lot in bed now due to first months of benzo recovery.

 

 

2) she said that someone can avoid BPPV by continuing epley manuever 1-2 weks after BPPV symptoms are gone and start it again in case you get any dizziness feeling at all like BPPV as she said it quite often warns a little bit before coming in full.

 

 

 

 

I think it makses sense what she said so I decided to share. T.

[[La...]]

Great info, Thomas! Thanks so much for sharing it. It makes complete sense to me. Lying in bed for any length of time isn't good for most people -- for balance, blood flow, muscle function, breathing, etc. And now that you know what to do about the BPPV, you won't have to deal with it much anymore. 

[Guest [...]]

Hi Lapis and floaty boaters!Just dropping in to say I have been in a pretty bad wave the past week.Anxiety is through the roof,and feeling extra dizzy again.Health fears have come back in full force too.Nothing good to say here at all!Even had a huge panic attack in the coffee drive thru yesterday when I heard an ambulance!Anyone else have the sirens fear?

 

It's just all so crazy!Breathing stuff is hanging around again too!

 

I hate to bring anyone down with my not so cheerful report,but just a typical bad wave in this healing process to get through!I know it will fade,but darn it is so hard and makes you believe this is your new normal and is not leaving!

 

I did have some peaceful stuff yesterday morning, sitting in the sun,and watching the deer in the field grazing,and the robins running around the yard.I got so sleepy sitting there,I almost dozed off.

 

One time last summer, I did start to fall asleep outside in my lawn chair,and happened to look down at my legs,and a black spider was sitting on my sock!It's amazing how fast you can jump from a chair when a spider is sitting on you!You totally forget you are dizzy and can hardly walk,you just scream mommy and bolt like a jet!

 

I wish you all an easier symptom day!

 

 

 

 

[[La...]]

Hi 2200,

It's good to see you here again, although I'm really sorry to hear about the latest wave. THIS HAS TO GO! Really! It's enough already, isn't it?! I know, I know....It was enough ages ago. It's another day of "getting through it". I'm in a rough spot too, but then again, I don't get long periods of calm. I just get that every-other-day pattern of better-worse. It's completely wacky!

 

I love the picture you painted of the deer, the robins, the sun, you dozing off.....sounds lovely!

 

Regarding the ambulance sirens, I think it's entirely normal to have a reaction to such sounds. That's actually the idea. They want people to snap to attention and get out of the way so that ambulances/fire trucks/police cars can move through traffic swiftly, and the only way to do that is to create a nasty get-your-attention kind of sound. I react terribly whenever our fire alarm goes off too. I can't move. I know it has to be loud and intense, but my legs shake so badly that I can't get up. The last time it happened, I fractured my foot because of how I stood up. I was totally wired. Can you say, "Adrenaline"? Ugh.  :'( :'( :'( 

 

 

[[Th...]]

Thank you Lapis2 about this very good Group you are running! You deserve a trophy!