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

[[La...]]

Thank you, Lady Den and Lapis2. I really appreciate all of the info and insights.

 

I was diagnosed with perimenopause earlier this year. I have a follow-up scheduled with the doctor to discuss the dizziness next month. But there is not a time during my cycle when I am not dizzy, so I don't think it's really related. I already am on a very strict low-histamine diet, and will focus next on removing salicylates. I am working with a naturopath and we regularly discuss diet and supplements. I've also switched toothpastes, deodorants, removed chemicals from the house, etc. No relief.

 

My frustration is not knowing whether the root cause is benzo recovery, mold detoxing, hormones, a vestibular migraine, or a combo of them. I've tried so many things over the past 1.5 years and nothing has lessened it. I just wish I knew what it was—even if it's just my last benzo recovery symptom, then I could trust that it would go away like all the other 100 symptoms did! But not knowing, it could be something else that won't go away at all.

 

I would be thrilled if this were a fine-tuning phase, but at 2.5 years off, I'm doubtful.

 

Thanks for listening. I just needed a place to share my frustrations. No one else really understands.

 

Hi WarriorSpirit,

I, too, am in perimenopause, and having read about this topic a fair amount, I can share that it's a four-to-ten-year process. The fact that you're dizzy throughout your cycle doesn't decrease the possibility that it's part of the cause of your dizziness. The literature that I mentioned to you earlier reflects the fact that low estrogen (which is one of the things that's dropping during perimenopause) is linked to various types of vestibular issues. I will try to post some of those study links a bit later on. I'm not up to it at present (had another awful night and am in a lot of pain right now), but you can have a look and, perhaps, print out the studies to share with your doctor. I did that just last week.

 

There's a fitness instructor and book author named Amanda Thebe whose first perimenopausal symptom at age 42/43 was dizziness. I came across her on a YouTube video and then, later, got her book out of the library. She had a range of symptoms, not all of which looked like perimenopause, and, in the end, it was the thing that was affecting her so badly. I'm not sure which hormone replacement therapy she started, but it was her gynecologist who was finally able to put the pieces together -- and that was only after a couple years of trying to figure out what was going on and why she couldn't function. If I can find that video, I'll post it as well. She was in conversation with another woman regarding perimenopause and its varied symptoms.

 

Anyway, it's worth looking into. Estrogen and progesterone play many roles in our bodies, and the drop-off of those hormones in our mid-late 40s-50s (average age is 51, I believe) can affect various systems of our bodies. Although women used to die much earlier, we're living longer than ever these days, and that means living without hormones. My mom's generation of women was put on hormones at age 50, and in my mom's case, she stayed on them for years. She never had one hot flash (until she came off!), and the hormones likely helped her bone density, urinary tract, skin, energy levels and cognition, among many other things.

 

Lapis, my one grandmother was on hormone therapy. She has nice thick hair, straight back and lots of energy! She died at age 85.

 

Ah, that's great, Gardenia! There's lots of evidence to suggest that women can benefit from hormone therapy, depending on their particular situations. I read a book called "Estrogen Matters" earlier this year, which had many, many studies to back that up. Suffice to say, it's something that women "of a certain age" should discuss with their doctors. There's a lot of excellent info about it online now too. It's obviously a personal decision, and we all have to weigh the pros and cons.

[[La...]]

When I had my hysterectomy. Doctor put me on hormone patches for a couple of years. Then I went the natural route. Black cohosh. It worked so well. If you look at the OTC meds for hot flash, that’s the main ingredient.  I’m not advising anybody to take that. This was before my taper.

Hope everyone is doing ok today. Hugs

[[Ho...]]

So lightheaded all the time.  Bending over makes me feel like I’m gonna pass out. Played nine holes of golf this morning with my son. It’s a real struggle but I’m glad that I pushed my self to do it!

 

So I’ve been trying to think of a way to explain my head / brain symptoms to people. The best thing I can think of is that it feels like I am pulling negative G’s. As if I were in a jet aircraft, in a dive then pull up situation.  Or if I am on a roller coaster going straight down then making a hard turn.  like my head is gonna explode from the pressure and I’m going to pass out. All while just sitting down resting sometimes.

 

Anybody else feel this sensation?

[[La...]]

So lightheaded all the time.  Bending over makes me feel like I’m gonna pass out. Played nine holes of golf this morning with my son. It’s a real struggle but I’m glad that I pushed my self to do it!

 

So I’ve been trying to think of a way to explain my head / brain symptoms to people. The best thing I can think of is that it feels like I am pulling negative G’s. As if I were in a jet aircraft, in a dive then pull up situation.  Or if I am on a roller coaster going straight down then making a hard turn.  like my head is gonna explode from the pressure and I’m going to pass out. All while just sitting down resting sometimes.

 

Anybody else feel this sensation?

 

Hi Hopper,

I've certainly had something like what you're describing sensation-wise. A roller-coaster ride. For me, though, lightheadedness is a different kind of dizziness, and I have, indeed, fainted before while also experiencing the benzo-dizziness. For me, the lightheadedness and fainting were caused by low blood pressure, brought on by menstrual cramping, blood loss and low iron levels, things that many women experience. And that passed. I had to take iron supplements for awhile to boost my levels.

 

So, in your case, assuming you don't get menstrual cramping or regular blood loss, I just wondered if there might be anything else going on that could cause the lightheadedness. Have you discussed that with your doctor? Are you drinking enough water and getting enough sodium, for instance?

 

Anyway, I just thought I'd put that out there. There can be different things going on simultaneously.

[[La...]]

Yes unfortunately. I even get what I call elevator jolts. Like being in an elevator that suddenly stops. There’s a drop like jerking when it stops suddenly. Or like on an airplane and you run into turbulence in the air. That sudden drop. That’s what happens to me off and on atleast once a day. When I bend over I feel like passing out too. Or when I look down.

It’s so hard to believe all this will go away. But I DO believe it because it has gone away briefly before so I know it will do it again. It just takes sooooooo dang long. I was talking to another BB about this. We were saying if we hadn’t gone through this we wouldn’t of believe it so how can we get upset with family and friends if they don’t believe this. We were saying how ridiculously long this takes for most of us. The terrible frustration of these symptoms disrupting normal simple functions, robbing of emotions, debilitating us, taking many months or years of our lives, costing us jobs or family/friends loss and so much more. Unbelievable that those tiny little devils did this. It makes me sad that I’m missing out on my grandchildren’s lives. That I can’t drive my car to pick them up and spend time with them. Or take my daughter on a picnic. I had to make peace with it, Hopper.

My brain is injured and must have the space and time to heal itself. That unfortunately requires sacrificing everything else. Besides, I can’t force it to heal. I can’t force myself to be out of this bed able to do normal things. So it came down to I was either going to lay here being depressed or accept it and just keep busy until it heals. I chose to stay positive about it. After all, my brain fixing itself is a great thing! So that I CAN be normal again. It’s just so difficult to wake up everyday in a Groundhog Day of the same symptoms and go to bed in a wave. I know it’s doing what it needs to do but wow it wears me out. I’m so glad one morning I’ll wake it and it will ALL be gone for good…never to return.

[[He...]]

Lady Den, I like the attitude you've chosen.  I get the elevator drops and the turbulence feelings too. I was an international flight attendant for 26 years and I equate some of my off balance stuff to how it feels when you are walking down the aisle of an airplane having turbulence.  It's like your legs are weightless and you can't get a firm grip on the ground.  That's just one iteration of the symptoms I get in this category but this example is spot on for me. 

 

My dizzy stuff seems to be improving....knock on wood.  Hope that gives people hope.

 

[[La...]]

Helen mine is improving slowly as well. It varies in intensity throughout the day. The airplane turbulence is for sure a good example.  I’m glad this is getting better for us both. I’m knocking on wood 🪵 too lol

🪵 🪵 🪵

Today I’m going to try to sit up on the couch. Gotta try or else I won’t know. Wish me success! Fingers crossed 🤞

[[Ho...]]

So lightheaded all the time.  Bending over makes me feel like I’m gonna pass out. Played nine holes of golf this morning with my son. It’s a real struggle but I’m glad that I pushed my self to do it!

 

So I’ve been trying to think of a way to explain my head / brain symptoms to people. The best thing I can think of is that it feels like I am pulling negative G’s. As if I were in a jet aircraft, in a dive then pull up situation.  Or if I am on a roller coaster going straight down then making a hard turn.  like my head is gonna explode from the pressure and I’m going to pass out. All while just sitting down resting sometimes.

 

Anybody else feel this sensation?

 

Hi Hopper,

I've certainly had something like what you're describing sensation-wise. A roller-coaster ride. For me, though, lightheadedness is a different kind of dizziness, and I have, indeed, fainted before while also experiencing the benzo-dizziness. For me, the lightheadedness and fainting were caused by low blood pressure, brought on by menstrual cramping, blood loss and low iron levels, things that many women experience. And that passed. I had to take iron supplements for awhile to boost my levels.

 

So, in your case, assuming you don't get menstrual cramping or regular blood loss, I just wondered if there might be anything else going on that could cause the lightheadedness. Have you discussed that with your doctor? Are you drinking enough water and getting enough sodium, for instance?

 

Anyway, I just thought I'd put that out there. There can be different things going on simultaneously.

 

Thanks for the reply Lapis!  I have mentioned this to my doctor. I even went so far as to see a neurologist and had a brain MRI which came back “normal”. I have developed high blood pressure from all of this and am currently on 2 meds to try and control it. But this has been happening long before any new medications. Also my blood labs all come back normal. Guess this is just the way my life is gonna be from now on.?.?

[[He...]]

Helen mine is improving slowly as well. It varies in intensity throughout the day. The airplane turbulence is for sure a good example.  I’m glad this is getting better for us both. I’m knocking on wood 🪵 too lol

🪵 🪵 🪵

Today I’m going to try to sit up on the couch. Gotta try or else I won’t know. Wish me success! Fingers crossed 🤞

 

LD,  I'm glad yours is improving bit by bit as well.  Good luck on the couch today!!  I love your spirit.

[[La...]]

Thank you Helen. Big hugs to you. I hope your day is better as well

[[Wa...]]

Hopper 14,

My dizziness feels like my brain is swaying or spinning in my head. When it's mild, it's like a gentle sway that is noticeable but not awful. When it's really bad, it feels like it's spinning really fast, and there's loud tinnitus with it and crushing pressure (and nausea). I'm sure it's not real dizziness but just a throbbing sensation of some sort, but it makes me feel dizzy! I only feel relief when I'm moving, like walking or driving in a car. But then it returns with a vengeance as soon as I'm still again. It's a bad today for my head. Hoping you're all doing better.

 

 

[[Ho...]]

Sorry you are dealing with this and having a bad day WarriorSpirit. The tinnitus has been off the charts for me too lately! 

 

Hope we all get some relief soon!

[[La...]]

My tinnitus increases when I began a wave. My boatiness does too. As well as some old symptoms pop in and out and a new one pops in briefly. Since I’ve been in this shift ( since October 1) I’ve noticed I have hypersalivation off and on. When I woke this morning with dry eyes and mild tight belly. I knew I’d have a big wave today. Sure enough I’m in one right now. It’s funny how when I get old symptoms pop back in, they give me the heads up that big one is coming. Does this happen to any of you?

[[Ho...]]

All I seem to have are waves within waves. I haven’t had a day where I felt “normal” in about 6 years and I don’t think that I ever will again.

 

Good for you for being able to accept your situation LadyDen!  I struggle with this…I don’t want to accept that this is my life forever going forward. It’s so bad today, all of it. I’m just so over it all. So may sxs at almost three years off with no end in sight. It’s exhausting going to bed every night saying “I hope tomorrow is a better day”, then it really isn’t.

 

I don’t need to be running marathons or anything but being able to do “normal people things” without having to check in with my symptoms everyday would be acceptable to me.

 

Praying that we all get relief from this one day soon!

[[La...]]

Yeah I hear you Hopper. I don’t want much either. Just quality of life back. To be able to walk around and drive to the store or go to the park. Just normal. I know it’s been a real long journey for us both. Yours longer than mine. But you’ve got to believe that it will get better eventually. I feel the same as you I don’t want to be like this forever. And I know I won’t be. All these symptoms for this long can’t be for nothing. Everything has a reason. As far as healing goes, some just take longer than others unfortunately. This may be due to tapering, CT, how many meds they were on, how many times they got off then reinstated, how long they took it, how often, what areas of the brain was hit the hardest, genetic factors, age, gender, etc Who knows? I’m sure it’s a combination of several of those. No two people are alike and neither is our neuroplasticity ( the way our brains heal). Two people can be on the exact same medication for the exact same time at the exact same dose having the exact same age and gender but one may heal in a year and the other might take 2-3 years.

I’d like to encourage you to don’t lose hope. You’ve come this far. I’ve read some on here never really got a window for years then woke up healed. This could happen to you. We all have times that we feel it’s permanent especially if we’ve been struggling for a long time. I had that thought earlier when in my nasty wave. I had to acknowledge it was WD symptom just as much as my other symptoms. I’m so sorry that you feel like this everyday. Just know I’m here for you. Keep saying every night that tomorrow will be better and one morning soon, it will be.

[[Ho...]]

LadyDen, Thank you for the kind encouraging words! Deep down I know you are right (I hope)! 

 

I have done so much research on this whole thing and I understand all the scenarios and factors you mentioned. Perhaps there may have been some self pity and frustration on my part at play here. Either way, thank you for the pick me up! 

 

Sending healing thoughts your way!

[[Be...]]

I had a nabe who was on high dose benzo's for a year and took 4 weeks to get off them and felt fine then.  Some people never have w/d symptoms.

[[Ga...]]

So lightheaded all the time.  Bending over makes me feel like I’m gonna pass out. Played nine holes of golf this morning with my son. It’s a real struggle but I’m glad that I pushed my self to do it!

 

So I’ve been trying to think of a way to explain my head / brain symptoms to people. The best thing I can think of is that it feels like I am pulling negative G’s. As if I were in a jet aircraft, in a dive then pull up situation.  Or if I am on a roller coaster going straight down then making a hard turn.  like my head is gonna explode from the pressure and I’m going to pass out. All while just sitting down resting sometimes.

 

Anybody else feel this sensation?

 

Hopper,

 

I, too was on Xanax and I have alot of same sx as you.

 

Long term benzo and then forced c/t.  It's been 11 yrs now. I've had that pass out feeling too. Walking like a drunk, dizzy, TINNITIS,  TOO sensitive to stress,  it just got progressively worse.

[[Ho...]]

So lightheaded all the time.  Bending over makes me feel like I’m gonna pass out. Played nine holes of golf this morning with my son. It’s a real struggle but I’m glad that I pushed my self to do it!

 

So I’ve been trying to think of a way to explain my head / brain symptoms to people. The best thing I can think of is that it feels like I am pulling negative G’s. As if I were in a jet aircraft, in a dive then pull up situation.  Or if I am on a roller coaster going straight down then making a hard turn.  like my head is gonna explode from the pressure and I’m going to pass out. All while just sitting down resting sometimes.

 

Anybody else feel this sensation?

 

Hopper,

 

I, too was on Xanax and I have alot of same sx as you.

 

Long term benzo and then forced c/t.  It's been 11 yrs now. I've had that pass out feeling too. Walking like a drunk, dizzy, TINNITIS,  TOO sensitive to stress,  it just got progressively worse.

 

Hi Gardenia, I’m sorry that you have had to deal with that. Please tell me it has gotten better in the past 11 years…

 

Best wishes!

[[La...]]

Warrior mine waxes and wanes too. It’s so weird. I wish it was just the same but gradually go away. Then we all could deal with it much easier. But nope….nothing in this recovery is easy. So I’m glad I kept a journal on its progress. Looking back it IS much better. It’s just so slight that we don’t notice the difference. But it will be obvious very soon if we just hang in there.

Hope today is better for you. Happy healing ❤️‍🩹

[[La...]]

I had a nabe who was on high dose benzo's for a year and took 4 weeks to get off them and felt fine then.  Some people never have w/d symptoms.

Becks this is exactly what I was saying. Some people according to their unique make up don’t have a hard time getting off. I have one word for how I feel about those lucky folks….

I’m jealous! 

Hope today is going well for you dear friend. Hugs

[[La...]]

So lightheaded all the time.  Bending over makes me feel like I’m gonna pass out. Played nine holes of golf this morning with my son. It’s a real struggle but I’m glad that I pushed my self to do it!

 

So I’ve been trying to think of a way to explain my head / brain symptoms to people. The best thing I can think of is that it feels like I am pulling negative G’s. As if I were in a jet aircraft, in a dive then pull up situation.  Or if I am on a roller coaster going straight down then making a hard turn.  like my head is gonna explode from the pressure and I’m going to pass out. All while just sitting down resting sometimes.

 

Anybody else feel this sensation?

 

Hopper,

 

I, too was on Xanax and I have alot of same sx as you.

 

Long term benzo and then forced c/t.  It's been 11 yrs now. I've had that pass out feeling too. Walking like a drunk, dizzy, TINNITIS,  TOO sensitive to stress,  it just got progressively worse.

Wow wow wow, am sorry that you’re struggling for that long. Becks is still in the struggle too. It was cruel to be forced CT. I’m saddened to read this happened to you. I know after so long this is hard to believe but there’s still hope.

Sending you much hugs 🤗

[[Fr...]]

Here's a link to a website that gives information about vestibular problems. This particular page discusses various medications, and it has some key facts about benzodiazepines.

 

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

 

If you're having any trouble with the link, have a look at the first section here:

 

"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."

 

Hi new here-

Lady Den sent me over from the bed ridden group. I guess I didn’t realize how much of my problem is vestibular. When I looked at the list of symptoms I have a sinking in falling feeling, an extreme pulling down sensation, and feeling my heart beat all over my body. I didn’t realize these were vestibular issues. Is this like vertigo? I still don’t really understand fully. I do get a boating floating motion sickness type feeling from talking and noise or scrolling in my phone really just any stimulation to the brain. That along with pots and a heaviness and weakness plus adrenaline surges all night with very little sleep I would say I am bed bound 23 hours out of the day.

 

I can here to asking about meds like Dramamine because I have horrible dry heaving the first half of the day almost like when you are pregnant and your stomach empties a d then you dry heave. I was thinking about Dramamine or zofran or something it I really don’t want to take an antihistamine. Didn’t realize that these meds also treat the vestibular issues snd are not advised. My dry heaving is violent a d makes me cry a d ore to the point I am having to wear pee pads. Sorry TMI so I was looking for something for the nausea but seems all these meds also treat the vestibular issues and are not advised. Any Insight would be helpful.

[[La...]]

Hi Fruity Pop,

First off, yes, according to the literature above and other literature on vestibular suppressants like benzos, antihistamines and anticholinergics, taking medication that makes your brain sleepy won't help your vestibular (balance) system normalize. On the contrary, it can slow it down. I'm wondering, though, if you have consulted with your doctor about what you're experiencing. Have you asked about these symptoms or sought any medical advice at all? If not, it seems like that would be a good idea.

 

Vertigo usually refers to spinning, but some people use that term rather loosely to mean any kind of dizziness. I don't have vertigo (spinning) at all, just disequilibrium -- a floaty-boaty, rocking, push-pull sensation. Check the first page of this thread for other descriptions that BBs have used to describe what they're feeling.

 

[[La...]]

Welcome Fruity.  As Lapis said those nausea/ vertigo meds will more than likely prove to be useless or disrupt the healing of your vestibular system. I agree that if your symptoms are so worrisome, you can go let an ENT check you out just to confirm your results come back normal. Most of the time, they will find nothing. Unfortunately they don’t have specific vestibular tests for benzo injury related issues. But for peace of mind, you can definitely go have the tests they do have. These issues we have just need time to heal itself. Sometimes this might take awhile. But don’t be discouraged by that. Oftentimes it slowly gradually improves  although both me and Lapis have been dealing with this a long time, we both can say it has improved. You can try vestibular exercises for peace of mind as I did. They honestly didn’t help me much besides giving me a way to safely be upright. Many of them can be done in bed. Being bedridden from this I absolutely can relate to how you feel. It is scary, debilitating and difficult to live like this. But I’d like to encourage you to remain calm as you can because any time I was stressed my symptoms increased a lot! Staying in bed most of the day for day in and day out over extended time is like being in prison. So what I do is stay distracted while resting to give my brain the much needed space/time to compensate. In my opinion our brains can’t handle being upright right now so it forces us to lay down. This is a good thing to protect us. At the same time, we can’t just stay like this. So push yourself a little bit each day. Try sitting up for 5-10 minutes then lay back down. Increase how many times you do this every 3 days. When in bed, exercise to keep your muscles from becoming too weak. So whenever you can be upright, you’ll be ready. I made rules for myself like I have to sit up to eat, sit up to bathe, walk a few steps without my walker, etc those little things add up.