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

[[La...]]

Yay Miss!  This is great news that it helped you and you’re sleeping has improved. I’m sure it will continue to do so. You’re very welcome, my dear. I also thank you for your support to others here. We give, we receive…..that’s how we make it  Wishing you a great day!

 

Hopper, I’m thrilled that you made it the rest of the way. Enjoy your visit with your dad. Treasure the memories. These vestibular issues are horrible but you are doing all you can. That is awesome!

 

Helen big hugs to you for being such a lovely person to us. Thank you for your support. I hope you still are doing well.

 

 

[[La...]]

Hey Floaty boaters! Where are you? Hopper? Lil M? And whoever is sailing rough waters….please check in to let me know how you’re doing.

Hugs 🤗

 

As for me…still various levels of boatiness daily….sometimes a little sometimes medium sometimes strong. But if I had to say so then overall it’s milder more often now. So that’s improvement. My ataxia episodes also come and go but they’re mild for sure! I’m up to walking a little over 2000 steps a day now. Wooohoo! Still not gotten too far from my apartment door but I know that will be soon.

[[He...]]

Lady Den!

 

2k steps is great!  I'm so glad for you.

 

I have very little boatiness anymore but get a whiff of it here and there with other symptoms. 

 

I wish the same for all of you here.

 

Thanks for saying hi LD! 

[[Ho...]]

2000 steps LadyDen!?!? YES! So happy for you!  I knew you would get there with that positive, can-do attitude!

 

I’m hanging in there, while the floaty-boaty is always with me, it’s not my worst system. The chest pain and heart palps have been unbearable lately and the fear of dying from a cardiac event has pretty much sidelined me for a while. Even with all my other symptoms, if these two things would pass, I think I could get on with my life.

 

Congrats on your accomplishment and best wishes in reaching the next one! 😊

[[La...]]

Big thanks Helen and Hopper. Very kind of you both. Now those steps are spread out during the day. I wanted to make that clear. This week I’m going for 2500 a day. If my symptoms cooperate. Isn’t that how we all live? As you said Hopper we look forward to not having to deal with this anymore real soon. Helen it’s great that your boatiness is becoming a distant memory. Hopper’s yours doesn’t sound as unbearable anymore either. And mine isn’t unbearable either. I’m the same as you guys…if my main symptoms would leave for good, I’d declare myself healed at 90%. Currently I’d say I’m about 65-70 max. It’s weird how the main symptoms hang on to us like a bad prom date 

Hopper and Helen we WILL continue to improve and this WILL be a chapter that we will close. 

 

And today is another day towards that goal. Love to you both.

 

:smitten: :smitten:

[[He...]]

Lady Den,

 

I hope you get your 2500 steps in today. That's really great and it doesn't matter if they are spread out.  You're getting them!  I know you couldn't even sit up for long when I first "met" you.  This is progress.  I am beyond grateful to have boatiness take a hike but I'm aware it could circle back.  I'm dealing with lingering painful burning and tingling and the feeling of hot oil on my scalp and few other things but since the migraines and the boatiness have improved so much, I'm going to assume these will too.  Yucky morning today so will just rest on the couch until things feel better for walking.

 

Good luck to you today! You too Hopper and anyone else suffering from boatiness.

 

Helen

[[La...]]

Helen good idea to just couch surf today. I won’t be doing much either. Yes I’ve made good progress since meeting you. Not where I wanted to be but getting there. I really really really hope that burning goes away for you. When I do get it from time to time, I hate it!

I’m hanging out with Jack Sparrow and my daughter right now. When he takes his drunk butt to sleep then I’ll sit up to watch a movie with my daughter.

 

Darn those pirates! 

 

 

[[He...]]

Hey,

 

Tell Jack Sparrow it's your daughter's turn to hang around with you, NOT HIS. 

 

Helen

 

[[La...]]

Yeah I told him but he’s a hard head pirate that don’t listen. He bounced me all day and night. So we played cards and she raided my closets o try on some of my clothes that she’s been eyeballing for awhile.

It’s raining here. I’m assuming from the hurricane that has swept past. It seems when it’s cloudy days I feel rougher. Or is it just a coincidence? This morning is a bit rough and last night was rough. I haven’t had a decent morning or night in so long that I’ve forgotten what it’s like. I guess when we have normal mornings with no symptoms it will feel weird. We’ll have to get used to it again. I don’t mind and it would be a muchhhhhhh welcomed feeling 

[[Ho...]]

I long for the day when I wake up and go about my day without thinking about any of this!

[[Ho...]]

Do any of you ever get a sudden intense head pressure that makes you feel like you’re gonna black out?  Or the ones that zap through your body and even disrupt your heartbeat?

[[He...]]

Do any of you ever get a sudden intense head pressure that makes you feel like you’re gonna black out?  Or the ones that zap through your body and even disrupt your heartbeat?

 

Hi Hopper,

 

I do get the zaps that shoot through my scalp and then my chest tightens up.  I feel very unbalanced when it happens. It's usually leading into a longer wave of something or other.

 

Helen

 

[[La...]]

I long for the day when I wake up and go about my day without thinking about any of this!

ME TOO! I’m so tired of starting my day in morning dread which forces us to HAVE to think about this. Ughhhh! Enough already!!! 

 

And yes I get head pressure. I used to have the kind that made me feel like that ( seizure, stroke like or passing out like). But now it’s just mild head pressure without all of that. Not constant but as Helen said I get it when my waves are rougher. Also I have the zaps but they only occur at night when I’m drifting to sleep. They’re also milder now and not every night. But I use to have them every night. So all of that stuff will improve with time.

[[Ho...]]

Thanks for the replies ladies!  I hope you are right LadyDen, but it’s been almost 4 years already. If this is the start of a new wave that is very disappointing considering I just came out of one that lasted all summer! Ugh, it just never seems to end!

 

Healing thoughts to you all!

[[La...]]

Hopper isn’t this so ridiculous and slow to heal? Absolutely crazy roller coaster. Yesterday I was walking in the sun…even walked further from my door. Pretty decent for 2 days but last night that window closed. All we can do is keep going until it heals. No matter how I feel about it, I know it will heal. But boy do I wish it was today! This wears us out, right? I think even if we get amnesia in old age we would remember this…it’s that horrible to endure. So we keep supporting each other and keep the faith. Time will tell the truth in this. 2, 3, 4 years…..it will. Hang in there 

[[Ho...]]

Thanks LadyDen! Going to see my cardiologist tomorrow to see if I can get some answers on my heart / chest pain issues. I’m hoping he just tells me it’s all good!

[[gr...]]

This withdrawal is horrible. Glad I can come here. No one around understands. They don't have to, although I wish my husband wouldn't be so cruel.

Just have to keep listening to music and get outside.

[[Ho...]]

Graced333, It truly is horrible and I’m sorry your spouse isn’t a bit more understanding or at least empathetic to your needs. Sadly, Benzo withdrawal it’s just one of those things you have to go through to understand and I don’t wish this on anybody.  There are always people here to commiserate with. We’ve all been there to some extent.

 

Hope you get some relief soon!

[[Ho...]]

Howdy folks! This isn’t really vestibular related, but I thought I’d share with the group since it essentially good news:

 

 

Back from the cardiologist today: He looked at my blood pressure records and all my home ECGs that I brought for him to assess. He assured me that none of this is life-threatening and ordered no further testing at this time. I asked him if 1000+ heart palpitations per day are too many and could cause any harm to my heart and his reply was no.  He added that it was unlikely that the Amlodipine was contributing to the increase in frequency of the PAC’s and PVC’s.  He did a very good job of assuring me that I do not have any heart disease based on the previous testing and that the heart palpitations or not life-threatening and I can continue on with an active lifestyle (easier said than done, right).

 

He said we could address the heart palpitations with medication if I wanted to, but he did not recommend that course of action at this time. He, just like my PCP suggested that I address the panic/anxiety. Both of them would like to see me go back on some type of anxiety medication but I don’t know if that would help me with my brain as scrambled it is right now and still trying to heal. 

 

All in all, I suppose this is good news!  I just need to convince my brain that I’m not going to die when this happens all day, every day!

 

Hope you all are having a balanced day!

[[La...]]

Good morning everyone! I’m sorry I’ve been absent a bit. If you all are keeping up with the news the Carolinas are getting hit with a hurricane today. We’ve already had high winds and rain beginning. So I’ve been preparing and taking some rest to keep calm. I’m more inland but still will be very much affected by the storm. Also I’ve not been feeling well with waves. As you said Hopper this isn’t linear and causes all sorts of bodily uncomfortableness at unpredicted times with unpredictable intensities. I agree with you, Hopper, if you take anxiety medications you already know the hell you’ll be in or worse than you already are with having an injured brain that’s in the process of returning to homeostasis. My vote is to just endure it as not to interrupt the healing. It’s already having a tedious time trying to perform normal functioning….that’s what your heart issues are. The brain trying to keep things normal. I agree with you that you can up your calming tools especially when your heart rate increases. Tell yourself that all is ok and it will pass soon. I’m very happy to hear your good news that nothing serious is going on. It will help you to have peace of mind. And certainly confirms it is WD. Most or I’d say in majority of the cases, all of our symptoms are just the body trying to return us to normality. WD after effects! My newest symptom is increase in sound sensitivity to booming noises such as music bass. I immediately when I hear it, began anxiety with heart racing. My brain overreacts to the bass. I simply start calming controlled breathing, put on the tv and earplugs and find something to keep my mind busy to help ignore it until the sound is gone. I’ve had the sound sensitivity before but it was very mild. It’s back a little worse this time. But I’m not too concerned because I know what it is and know it’s WD.

 

Grace you’re right that it makes this so much more stressful when our loved ones don’t offer support or show us love that we need daily. It’s very sad even more when it’s our kids or spouse we took vows with. My husband was so unsupportive and unloving that he left me for another ( divorced me) while I was completely bedridden with a child. Not to make less of how you feel but look at my situation….it could be worse for you. I had to take a step back to look at this from my other family members point of view. This is not an excuse for their lack of love and support BUT it is a reason why they’re behaving like this….they CANNOT understand this even if we explain it or show it to them in black and white! Unless someone has experienced this they don’t have any foundation to even begin to grasp what’s happening. This is for the most part an internal occurrence mainly coming from the brain. There are a few symptoms that manifest outward but they’re not alarming. Such as hair loss/ thinning, loss of weight/ gaining weight, shaking/ tremors, rashes and general overall appearance of not looking well. I’ve explained until I’m blue in the face to my family that I just can’t get up get dressed and go run to the store or anywhere. It’s not that I don’t want to….my vestibular system is very injured so I physically can’t. What do they do? They say “ if it was me, I don’t care if I was so dizzy, I’d do it anyway and not let it keep me in the house everyday all day”. THEY DONT GET IT! It’s not that simple or else I would have done that a LONG time ago. So I stop letting their words bother me. Well, my brother got COVID last year and it started with severe dizziness…. He said he’d never experienced dizziness like that to the point that he couldn’t drive or walk….HA! Then he understood what I’ve been dealing with everyday for 3 years! His reply was that he doesn’t see how I can stand being like that for that long. He has a brand new respect for being dizzy. Experience certainly is the best teacher! I look perfectly fine on the outside. But my vestibular system is not healed yet. It is slowly getting there. I’m no longer completely bedridden. When my boatiness and unbalanced revs up I get in bed until it calms down then I’m right back on my feet. This is a long slow back and forth process for most of us. I’d suggest not to stress yourself out with trying to get your husband on board. Save yourself the added stress. Get your support from the ones who offer it and as Hopper said this forum is full of people that is eager to support. Our focus has to be on our healing. We are forced in many ways to be a bit selfish…how could we not when we are in torment inside our own bodies. All you can do is tell your husband it hurts you that he isn’t supportive then it’s up to him to do what he sees is right with that. And if he doesn’t then continue to do what you need to do for you as you heal. I’m here in an apartment living alone. My brother comes by often to check on me, spend some time or get what I need. When he isn’t here, he calls/ text everyday. I thank God for him! I’m grateful because I know some people don’t even have one person. I get very lonely everyday without a companion and kids that rarely come see me. I’m in the Carolinas where I moved here before I began my taper so I don’t know very many people. I can’t go anywhere or drive. But you know what? I have my brother, roof over my head, I can walk without  my walker now, I can take care of my physical needs, I can sit up now for about an hour or so and plenty of food in my kitchen that I can cook without help. So in my chaos I’m still blessed! One day hopefully soon I’ll be driving and able to go places. Until I heal to that point, I’m focusing on staying calm and self love as I do what I can daily. Sending you a big hug….I know how you feel. 🤗🤗🤗🤗🤗

[[gr...]]

LadyDen - THANK YOU!!! I so needed to read your words :)No longer am I going to expect anyone to understand what I (we) are going through. So sorry about what your husband did. I have lost a lot of weight and my eyes are blurry all the time. My sister suggests over and over to eat more and get my eyes checked. She means well and I understand. Luckily, I am retired and only have a job in the summer. As I have said. My oldest daughter will not speak with me or let me see her children. My youngest has been as supportive as she can be. I have to "heal myself and the rest will follow". One foot in front of the other.

[[He...]]

Howdy folks! This isn’t really vestibular related, but I thought I’d share with the group since it essentially good news:

 

 

Back from the cardiologist today: He looked at my blood pressure records and all my home ECGs that I brought for him to assess. He assured me that none of this is life-threatening and ordered no further testing at this time. I asked him if 1000+ heart palpitations per day are too many and could cause any harm to my heart and his reply was no.  He added that it was unlikely that the Amlodipine was contributing to the increase in frequency of the PAC’s and PVC’s.  He did a very good job of assuring me that I do not have any heart disease based on the previous testing and that the heart palpitations or not life-threatening and I can continue on with an active lifestyle (easier said than done, right).

 

He said we could address the heart palpitations with medication if I wanted to, but he did not recommend that course of action at this time. He, just like my PCP suggested that I address the panic/anxiety. Both of them would like to see me go back on some type of anxiety medication but I don’t know if that would help me with my brain as scrambled it is right now and still trying to heal. 

 

All in all, I suppose this is good news!  I just need to convince my brain that I’m not going to die when this happens all day, every day!

 

Hope you all are having a balanced day!

 

Hopper,

 

Thank you for posting this. I've also had my heart checked and rechecked and nothing wrong. It's very reassuring and I liked reading what your doc says.  We're SAFE. 

[[He...]]

Good morning everyone! I’m sorry I’ve been absent a bit. If you all are keeping up with the news the Carolinas are getting hit with a hurricane today. We’ve already had high winds and rain beginning. So I’ve been preparing and taking some rest to keep calm. I’m more inland but still will be very much affected by the storm. Also I’ve not been feeling well with waves. As you said Hopper this isn’t linear and causes all sorts of bodily uncomfortableness at unpredicted times with unpredictable intensities. I agree with you, Hopper, if you take anxiety medications you already know the hell you’ll be in or worse than you already are with having an injured brain that’s in the process of returning to homeostasis. My vote is to just endure it as not to interrupt the healing. It’s already having a tedious time trying to perform normal functioning….that’s what your heart issues are. The brain trying to keep things normal. I agree with you that you can up your calming tools especially when your heart rate increases. Tell yourself that all is ok and it will pass soon. I’m very happy to hear your good news that nothing serious is going on. It will help you to have peace of mind. And certainly confirms it is WD. Most or I’d say in majority of the cases, all of our symptoms are just the body trying to return us to normality. WD after effects! My newest symptom is increase in sound sensitivity to booming noises such as music bass. I immediately when I hear it, began anxiety with heart racing. My brain overreacts to the bass. I simply start calming controlled breathing, put on the tv and earplugs and find something to keep my mind busy to help ignore it until the sound is gone. I’ve had the sound sensitivity before but it was very mild. It’s back a little worse this time. But I’m not too concerned because I know what it is and know it’s WD.

 

Grace you’re right that it makes this so much more stressful when our loved ones don’t offer support or show us love that we need daily. It’s very sad even more when it’s our kids or spouse we took vows with. My husband was so unsupportive and unloving that he left me for another ( divorced me) while I was completely bedridden with a child. Not to make less of how you feel but look at my situation….it could be worse for you. I had to take a step back to look at this from my other family members point of view. This is not an excuse for their lack of love and support BUT it is a reason why they’re behaving like this….they CANNOT understand this even if we explain it or show it to them in black and white! Unless someone has experienced this they don’t have any foundation to even begin to grasp what’s happening. This is for the most part an internal occurrence mainly coming from the brain. There are a few symptoms that manifest outward but they’re not alarming. Such as hair loss/ thinning, loss of weight/ gaining weight, shaking/ tremors, rashes and general overall appearance of not looking well. I’ve explained until I’m blue in the face to my family that I just can’t get up get dressed and go run to the store or anywhere. It’s not that I don’t want to….my vestibular system is very injured so I physically can’t. What do they do? They say “ if it was me, I don’t care if I was so dizzy, I’d do it anyway and not let it keep me in the house everyday all day”. THEY DONT GET IT! It’s not that simple or else I would have done that a LONG time ago. So I stop letting their words bother me. Well, my brother got COVID last year and it started with severe dizziness…. He said he’d never experienced dizziness like that to the point that he couldn’t drive or walk….HA! Then he understood what I’ve been dealing with everyday for 3 years! His reply was that he doesn’t see how I can stand being like that for that long. He has a brand new respect for being dizzy. Experience certainly is the best teacher! I look perfectly fine on the outside. But my vestibular system is not healed yet. It is slowly getting there. I’m no longer completely bedridden. When my boatiness and unbalanced revs up I get in bed until it calms down then I’m right back on my feet. This is a long slow back and forth process for most of us. I’d suggest not to stress yourself out with trying to get your husband on board. Save yourself the added stress. Get your support from the ones who offer it and as Hopper said this forum is full of people that is eager to support. Our focus has to be on our healing. We are forced in many ways to be a bit selfish…how could we not when we are in torment inside our own bodies. All you can do is tell your husband it hurts you that he isn’t supportive then it’s up to him to do what he sees is right with that. And if he doesn’t then continue to do what you need to do for you as you heal. I’m here in an apartment living alone. My brother comes by often to check on me, spend some time or get what I need. When he isn’t here, he calls/ text everyday. I thank God for him! I’m grateful because I know some people don’t even have one person. I get very lonely everyday without a companion and kids that rarely come see me. I’m in the Carolinas where I moved here before I began my taper so I don’t know very many people. I can’t go anywhere or drive. But you know what? I have my brother, roof over my head, I can walk with my walker now, I can take care of my physical needs, I can sit up now for about an hour or so and plenty of food in my kitchen that I can cook without help. So in my chaos I’m still blessed! One day hopefully soon I’ll be driving and able to go places. Until I heal to that point, I’m focusing on staying calm and self love as I do what I can daily. Sending you a big hug….I know how you feel. 🤗🤗🤗🤗🤗

 

LD!!  I'm so sorry you aren't feeling good and that you have Ian to put up with.  it's pretty mild up here so far but we'll see what the evening brings.  Just some wind and light rain so far.  Thank you for your perspective and for so eloquently sharing you story.  I'm not feeling good either but today it's headache and the head jerk thing where you feel like a strong wind is buffeting you around even though you are INSIDE the house.  I'm just staying calm and feeling grateful to have a home to shelter from the storm in today.  Thinking of you with love as always.

 

[[Ho...]]

LadyDen, sorry the storm has your anxiety levels elevated. We are getting a lot of rain and wind here north of you. Hoping it will pass by sometime tomorrow. Stay safe and best wishes!

[[La...]]

Thank you all. The storm was ugly but I’m grateful that it wasn’t as bad as it could have been. This morning is left over rain and a little wind every now and then.

 

Sending much love to all of you. Enjoy your weekend. ❤️❤️❤️