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

I HAD to tell y'all that today I was less boaty after my morning dread lifted. At lunch I could barely feel the waving floor. I walked into the kitchen and fixed my lunch without feeling like I'd pass out or fall. I'm soooooooooooooooooooooooooooooooooooooooo happy! I'm hoping this is a sign that I'm turning a corner. I'm approaching my 4th month post jump. Too early to get excited?

I HAD to tell y'all that today I was less boaty after my morning dread lifted. At lunch I could barely feel the waving floor. I walked into the kitchen and fixed my lunch without feeling like I'd pass out or fall. I'm soooooooooooooooooooooooooooooooooooooooo happy! I'm hoping this is a sign that I'm turning a corner. I'm approaching my 4th month post jump. Too early to get excited?

 

Yay! So happy for you! It's not "too early to get excited". Celebrate everything! Celebrate every step forward! Being happy and positive helps in healing!

 

What great news! Let this become the strength that helps you to move forward!

I HAD to tell y'all that today I was less boaty after my morning dread lifted. At lunch I could barely feel the waving floor. I walked into the kitchen and fixed my lunch without feeling like I'd pass out or fall. I'm soooooooooooooooooooooooooooooooooooooooo happy! I'm hoping this is a sign that I'm turning a corner. I'm approaching my 4th month post jump. Too early to get excited?

 

Yay! So happy for you! It's not "too early to get excited". Celebrate everything! Celebrate every step forward! Being happy and positive helps in healing!

 

What great news! Let this become the strength that helps you to move forward!

 

I agree, LadyDen. Enjoy whatever good times come to you!

Thx Miss & Lapis. I'll do just that! Hope your both doing well

Hello, my questions, concerns are From neck to head and face symptoms.  It changed before cross over from K .2mg to 4mg Diazepan.  During tapering K, I have had all the symptoms; headache, head pressure, sinus pain, eye pain, neck pain around ear pain and numbness etc.  But I had windows and waves.  After crossover to Diazepam. 4 or 5 weeks symptoms got stronger and no windows.  I holding 3mg/day Diazepam for 3 weeks.  I thought Diazepam taper was going to be easier than K taper. Not true? Especially for the dizziness and tinnitus.  I can put up with pain, but not dizziness and nausea.  This dizziness ever goes away?  Is it permanent?

Hi Katsu, no the dizziness isn't permanent. Your body seems to be making adjustments to switching medications. And withdrawals. This sounds normal to me under your circumstances. Do the best you can to ride it out. It may or may not last long. Time will heal it in its time. I'm sorry you're going through this. Do your best not to change positions too quickly. Like don't get up from laying down too fast or take off walking too soon after standing. Be careful not to fall. Peppermint and ginger helps nausea. Laying on your left side helps as well. This is because your stomach is on the left. This tends to work because gravity takes the strain off your stomach reducing pressure. I hope this helps you and welcome to the dizziness group!

I have appoint with my psych. Dr. within next 10 days. I will hold my taper until then.  I do not know what my Dr. will suggest. It seems like other symptoms are settling down, but my head pain and pain around my left ear, left nose seems increasing. Sleeping left side would not help for me because all my other symptoms are showing on my left side; chest, shoulder, arm, leg pain and it is very uncomfortable to sleep on my left side.  Ginger tea is helping my nausea.  I am thinking talking to my PCP for my vestibular check for my dizziness.  What do you think?

Thank you.

This is about flu shots. I already asked on the "main board" if anyone had any issues and got about 6 replies. Kind of a mixed bag of zero issues with the flu shot to people being cautious and they just won't even try it.

 

I probably should of asked here too on the "dizzy" page. Well I got the flu shot yesterday afternoon and felt perfectly fine after all day. Just a bit of a sore arm. Well, I woke up at 3am feeling nauseated and a bit of that old familair "room gonna spin" feeling. It got a kind of bad. Had to hold onto my husband, felt shakey, weak and feeling faint. My blood pressure, pulse, and O2 saturation all normal (I have a pulse oximeter at home.) Feels like a vertigo setback which sucks because I have been 90% healed for 3 or 4 months now with no vertigo issues.

 

I've had the flu shot one other time. This was pre withdrawal. I had zero issues. The pharmacist even gave me a preservative free flu shot because of my history with tolerance and withdrawal just to be cautious to avoid any issues.

 

Now it's 5am and I am more calm, the shakiness seems to be subsiding and I feel fearful of moving much and setting off more vertigo. I did some breathing meditation to calm myself because as we know, the vertigo-anxiety-more-vertigo cycle happens. I'm sitting straight up in bed (we have an automatic bed where the head raises) and I'm sleepy and afraid to fall asleep to wake up to a spinning room. This is something that has not happened for 2 years. (I'm familiar with the Epley maneuver. I've done it before. I don't think that's what's needed here.) Anyway, I hope the flu shot didn't give me a set back.

 

I'm 16 months Ativan and drug free. I don’t take any medications and I avoid food triggers, I don't take supplements.

 

Has anyone had any issues with a flu vaccine in tolerance and withdrawal?

 

UPDATE: The flu shot definitely made me weak. I think this fired up my CNS and brought back the wooziness. My husband has to help walk me to the bathroom. Every little movement wants to bring on vertigo. I have to move very slowly, even in just turning my head, and lifting my head off of the pillow is difficult. I have to allow for the wooziness to stop. I've been walking daily, doing housework, and I even moved to a new house. I was healing. Almost healed. Then, the flu shot & boom 💥 here I am. Wow is my system sensitive to EVERYTHING? What if I get sick and need medicine or surgery? If I can't handle a flu shot? Ugh. Funny thing is, that distracting, like typing this, makes me feel better. Thank God for smart phones, BB and the internet for times when one is in bed convalescing not able to do anything else.

 

Praying that this is very temporary.

 

**UPDATE 4 DAYS POST FLU SHOT**

I AM VERY HAPPY TO REPORT THAT I AM MUCH MUCH BETTER NOW, but that first night was a doozey! I had about 2-3 days of the flu like symptoms that some people get from it. I'm almost back to where I was pre flu shot. It was like a 2 or 3 day "blip".

 

It made it obvious that any stress on the system for me can bring on some symptoms still. Hopefully that will continue to fade into the past as the months and years pass.

 

Now I just want to "live in the moment" and enjoy life because this time last year I was very sick in withdrawal. The holiday season last year was very hard and I struggled. For one example this time last year riding in a car was painful. My central nervous system was so raw from. withdrawal. I went through about a month of not be able to go much of anywhere. Shopping in stores was quite hard also. Now a year later I'm driving, and having no issues in stores. I still get fatigued but that's a tolerable symptom compared to all the other withdrawal symptoms I was enduring a year ago.

 

This year I am so much better and I can actually enjoy the holidays and I am VERY EXCITED  ABOUT IT! 

Katsu, for your own piece of mind if you'd like to go to your GP then do so. You can get tests after tests but don't be surprised if they all come back normal. This happens to many people in this forum. Your brain simply need time to heal/ compensate to the point that your symptoms greatly diminish or disappear. We tend to go get things checked out during withdrawal out of panic because we don't know what's happening. In our cases, we DO know what's happening and why. Our brains need to recover from benzo usage. Our brains are in repair mode ( why we've got symptoms). There's no test, doctor or magic potion to cause us to skip our symptoms. We just have to accept the symptoms, expect the symptoms and embrace the symptoms as healing. If you had surgery, what will heal it? TIME. If you sprained your ankle, what will heal it? TIME. If you lose someone you love, what will help your sorrow? TIME. I'm not saying that you won't stumble upon something that may help you. But, at the end of the day, time will be your healer.

 

Miss, I had my last flu shot last fall right after I started my taper. I had a sore arm for a few days that I used a heating pad on low heat to ease it. The first 2 days I felt fatigued like I was coming down with something but it didn't go any further. Other than that, I've not had any problems. I chose not to get one this year because my withdrawals have me bedridden and sick enough. I didn't want to put my body through anything else until I've healed more. Simply put, I don't know what kind of reaction my body will have so since I'm bedridden and not in public, I'm not worried about getting a flu shot. Our bodies are unique. You can have 2 people take the same medicine for the same amount of time. One could have long bad withdrawal and the other mild short withdrawal. One could get flu shot with no problem and the other having mild withdrawal could react badly to it. There's NO WAY to know each person's reaction. All you can do is make a decision and hope for the best. It sounds to me that you've had a reaction after being much healed. Dr Ashton mentioned this possibility. You might feel crappy for another few days. Just hang in there and know that getting a flu shot during a world pandemic was smart! I feel that the bit of setback was worth it. I'm only 4 months post jump with not much improvement yet but if I thought for a second that I'd be ok getting the shot. I would go for it. I'm sending you fast bounce back to healing vibes. Feel better soon dear 

I'm sending you fast bounce back to healing vibes. Feel better soon dear 

 

LadyDen,

 

I'm much better now than I was this morning. I actually have been up walking slowly on my own, made my bed and watched a movie. Not near as woozy. Even able to laugh. It feels like you described. Like "I'm coming down with something" but it doesn't seem to grab on. No fever. Weak and crappy like when you have a bad cold.

 

Hopefully it will continue to diminish and be gone in a couple of days. Thank you so much for your well wishes.

 

Miss F

Hi All,

Miss Fortitude, I'm glad to hear that things have settled down for you following your flu shot. I haven't had any of those before, so I can't weigh in either way. But I do agree that everyone is different when it comes to such things.

 

Keep up the good work, though. It sounds like you're doing your best, which is all any of us can do. 

Hello Lapis. Glad to hear from you. I'm still working on my walking around. It's little improvement but I'll take it. I was able to stand 15 minutes without going back to bed last night. That allowed me to stand in the mirror to wash my face, comb my hair and brush my teeth in the bathroom instead of sitting. Felt great! Wow I was so boaty afterwards. I'm just trying to tell my brain it's ok for me to do normal things. No need to try to make me faint ! 

Get a small stool for your bathroom.  I sit down all the time to brush my teeth after I hurt my lower back years ago.

I have an interesting piece of news from a friend who is, like me, going through perimenopause. She, too, is in her mid-50s and having a range of symptoms. Guess what? She's dizzy. Not all the time, but I know she had a severe bout of it a couple of days ago. It's not the first time, either. Having found a number of references to dizziness as a possible symptom of perimenopause, I find it pretty interesting to hear of these recent experiences that my friend is having. I'm sure that's a factor for me and that it's complicating my post-medication-withdrawal dizziness.

 

Anyway, it's not as if she or I are interested in taking any sort of medication (e.g. hormones), but it does point to the fact that changing hormones can play a role in balance problems for women. I've certainly seen it mentioned numerous times in the medical literature about the Mal de Debarquement Syndrome. I haven't come across any new studies on this topic recently, but if I do, I'll post them here.

 

Take care all!

 

I'm 9 6rs off, ct long term benzos.

 

Still uneasy taking a shower.

Fear of falling, too.

 

Hi All,

Miss Fortitude, I'm glad to hear that things have settled down for you following your flu shot. I haven't had any of those before, so I can't weigh in either way. But I do agree that everyone is different when it comes to such things.

 

Keep up the good work, though. It sounds like you're doing your best, which is all any of us can do. 

 

Thanks Lapis2

 

I am much much better now, but that first night was a doozey! I had about 2-3 days of the flu like symptoms that some people get from it. I'm almost back to where I was pre flu shot. It was like a 2 or 3 day "blip". It made it obvious that any stress on the system for me can bring on some symptoms still. Hopefully that will continue to fade into the past as the months and years pass.

Hi All,

Miss Fortitude, I'm glad to hear that things have settled down for you following your flu shot. I haven't had any of those before, so I can't weigh in either way. But I do agree that everyone is different when it comes to such things.

 

Keep up the good work, though. It sounds like you're doing your best, which is all any of us can do. 

 

Thanks Lapis2

 

I am much much better now, but that first night was a doozey! I had about 2-3 days of the flu like symptoms that some people get from it. I'm almost back to where I was pre flu shot. It was like a 2 or 3 day "blip". It made it obvious that any stress on the system for me can bring on some symptoms still. Hopefully that will continue to fade into the past as the months and years pass.

 

Great news, Miss F! Glad you're feeling better. Also, I hope that eases any worries you may have about how long it might take you to get back to where you were before a particular stressor. It only took a few days. 

Glad to hear it's settled down, Miss 

I would really appreciate some support—I've been dizzy now for 5 straight months, with only a few hours of relief during that entire time. I just can't believe that I will wake up one day and it will be gone, despite what other buddies say. Almost everything I eat seems to trigger a headache or more head rushing/throbbing that feels like dizziness, even on a low glutamate/tyramine diet. I'm so worn out from this and frustrated because it is going on for so long. Any advice or words of wisdom? Thank you!

I'm sorry you're dealing with this terrible symptom. Unfortunately I'm in the same boat with dizziness/ boatiness. I've had it for about 7 months. Just the past couple of weeks I've seen improvement. I'ts less intense and almost disappears when I have a window. I also was shocked but happy when I read it just goes away one day. I'd rather have it as an annoyance for awhile than forever. I know you get tired of it, it's disruptive and hard to deal with but what helps me to dismiss those facts is when I chose to look at it positively. I know it sounds crazy but I'd rather not impose added stress on top of dealing with it. I look at it as my brain is trying to heal/ figure out its normalcy. That takes time & patience. If I chose to always be stressed out about it or be positive....either way it will heal when it can. I do everything carefully within my means until it goes away. I would suggest you do be careful and modify some of the things you do to prevent injuries. I also have low glutamate/gluten free diet but it hasn't made any difference in my boatiness. But I'm sticking with it because it's healthier. I'm also worn out everyday because it requires your muscles to work hard for balance. Keep them stretched gently and warm. My biggest advice is Accept it, Expect it & Embrace it. Eventually it will be but a memory.

That's fantastic advice, LadyDen. And good for you for keeping such a positive outlook! 

  big hugs Lapis thx I'm doing my best under the circumstances.

Hi everyone, happy fall/Halloween season 🎃 😊

 

Is using a cane a help or a hinderance?

 

Does it help?  or cause further deterioration of vestibular/physical function?

 

Has anyone used a cane during their withdrawal to help with mobility? With dizziness? With vertigo?

 

Any input helps thanks.

Miss Fortitude

Hi Miss. I haven't used a cane. I'm sorry I can't help with that but maybe a walker will be a better choice. A walker has much more stability if you get so dizzy that you might fall. It can give you two handles to hold onto until you can proceed and help you safely get back to a place to sit. That would be my suggestion. Others can chime in.

 

I do have a question as well... I've re-read this thread noticing a discussion on whether or not to go about life tasks even if you're dizzy/ boaty. Such as doing laundry, sweeping the floor, washing dishes, going for walks,etc but unless I missed it, I don't see the answer to that discussion. It made sense to me, that somehow by doing things it will tell the brain " it's ok, this is normal & you can handle this". Otherwise, how can it compensate if we don't attempt to do things that it needs to "relearn"? Should we push through the dizziness a bit to give our brains a nudge so to speak?

Hi All,

In my case, a walker has been essential in keeping me mobile and upright. I've got a concurrent and severe foot problem, so the combination of dizziness plus foot pain has made this whole thing extremely painful and rather brutal. I've never wanted to lie down very much or spend a day in bed, because it's just too depressing for me. But I've certainly had many days where I just couldn't manage much besides sitting in front of the computer, crying and wobbling around my small place for a few short back-and-forth walks.

 

However, I believe that in order to keep the vestibular system functional, it's important to keep using it -- that is, it's important to keep moving and being vertical. I agree with LadyDen that a walker is a safer option than a cane, since it's extremely stable. The two-wheeled version is better than the four-wheeled version for dizziness, I think, since the four-wheeled version requires more control and better balance. It's not just the vestibular system that requires movement, but it's also the musculo-skeletal system. "Use it or lose it" applies to both.

 

I can also recommend consulting with a physiotherapist (I think Americans call them "physical therapists") -- especially one who has vestibular rehabilitation training. They might be able to tailor an exercise program for you that keeps you moving, functional and strong during this challenging time.