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

[[Je...]]

Now I understand, thanks! I haven't had "vertigo/spinning" at all, or the feeling that I would faint. Just the disequilibrium. With usually no actual incidence over my movements. Just a very unpleasant and tiring feeling. It was very rare and mild for six weeks or so after my CT, to the point that i barely realised it (given I had vision problems, I think I interpreted any slight dizziness as a vision problem). I belive I really first noticed it clearly some 20 days ago: it was there in the morning but would go away after I went out and walked briskly. But now it's become pretty severe and constant, and my only true debilitating symptom, for ten days.

[[La...]]

It does seem common for people's symptoms to be changeable. I used to have a pretty distinct every-other-day pattern of one better day/one worse day. So, on the better days, I was able to do all my exercises and keep up my strength, and on  the worse days, I had to take it a bit easier. When I came off the second medication (SSRI), that changed, and the disequilibrium was bad all the time. Then it changed again.

 

Clearly, everyone is different.

 

As far as vision goes, it's one of the three main components of balance -- vision, vestibular and proprioception. Those three systems need to give the brain the same messages at  the same time. If one of the systems isn't working so well, you can feel dizzy. I had my vision checked out quite a bit at the beginning to make sure nothing was wrong. And it was all fine. In my case, it's the vestibular system that's problematic.

[[La...]]

LadyDen, I've read in another thread that you were relieved for a month a a half of your dizziness symptoms. This is very encouraging! I hope you'll get better soon.

Thank you Jelonek! Yes it did finally leave after many months of making me bedridden. It left at my 9 month milestone. Gone for nearly 2 months with very little popping back in ever so slightly. I was in heaven!!! LOL I started riding in the car, I had vestibular exercises from a PT coming to my house, I could bend my head down to cook meals, brush my teeth, sit on toilet, even drove once without any problem of a funhouse feeling or pulling sensation. I hang on to those 2 months because I know it will happen again soon.

I hope yours doesn't last long. Be careful, my friend. Don't second guess the thoughts your brain warns you to hold on to something. Go slow, turn the head slow. 

[[Be...]]

Is the magnet pulling sensation on one side rather than the other?  I have a bad sensation in the left side of my brain and mostly in the back.  I don't understand the pulling down sensation. 

[[Je...]]

I've seen my generalist last week and he prescribed me the molecule Acetylleucin against dizziness, over a period of ten days. The commmercial name is Tanganil. Honestly, I no longer trust his judgement, so I did not take it... Does anyone know this drug? It seems that this molecule is used only in France and a a couple of other countries (Spain, for example), but is virtually unknown in the English speaking world, as a google search in English barely shows any results.

[[La...]]

Hi Jelonek,

I've only ever seen that medication when I've read articles in French, but it's not approved here in Canada to my knowledge. It seems that they're unsure how it works, so that sounds a bit fishy to me.

 

This article is suggesting that there should be randomized controlled trials to assess its efficacy:

 

https://link.springer.com/article/10.1007/s00228-018-02617-6 

[[Je...]]

Yes, I had stumbled upon this study too. I really don't know then. Part of me thinks that even if does not work, it probablly can't do harm, but then again...

[[Ho...]]

2.5 years off and still so dizzy / lightheaded. Feels like I’m gonna fall out at any moment. I never do but it’s scary bad sometimes. My eyes don’t wanna focus.  Feels like I am drunk except I am acutely aware of how I feel. My problem is likely vestibular but nobody can fix it. Can’t tell me what’s wrong but offer more drugs. I fear this is my life from here on out. I wouldn’t even dare drive in this condition. Was given a brain MRI that came back “normal”.  I suppose the problem is that the affliction we have can’t be seen by conventional medical technology.

 

Feels like the ground is coming up to meet me. Knocking me around. Also, the tinnitus is off the chain today! 

[[La...]]

2.5 years off and still so dizzy / lightheaded. Feels like I’m gonna fall out at any moment. I never do but it’s scary bad sometimes. My eyes don’t wanna focus.  Feels like I am drunk except I am acutely aware of how I feel. My problem is likely vestibular but nobody can fix it. Can’t tell me what’s wrong but offer more drugs. I fear this is my life from here on out. I wouldn’t even dare drive in this condition. Was given a brain MRI that came back “normal”.  I suppose the problem is that the affliction we have can’t be seen by conventional medical technology.

 

Feels like the ground is coming up to meet me. Knocking me around. Also, the tinnitus is off the chain today!

 

Everything you're saying sounds like what others around here have said. I know how frustrating it is not to have any answers, but it IS good news that nothing bad was seen on your MRI. Most of us have "normal" results on our tests, which just shows that the tests can't/don't reflect certain kinds of dizziness.

[[La...]]

Yes, I had stumbled upon this study too. I really don't know then. Part of me thinks that even if does not work, it probablly can't do harm, but then again...

 

I tried a medication that didn't help but didn't seem to do any harm -- betahistine. It just didn't help and  it was probably meant for a completely different type of dizziness -- Meniere's Disease.

[[La...]]

Is the magnet pulling sensation on one side rather than the other?  I have a bad sensation in the left side of my brain and mostly in the back.  I don't understand the pulling down sensation.

No Becks mine is a pulling down like a magnet is underneath my feet pulling my brain. And every time it intensifies I get loose stools. Very weird!

Do you remember at the fair they have that centrifuge ride? I think it's called Graviton or something like that. When you get on it standing against the wall of it ( it's a big circle) as it starts gravity pushes you back and you can't move. You feel a strong pull/push that keeps you pushed back against the wall as it turns. That's the closest thing for me to describe how it feels to me except the pull is downward.

[[Je...]]

Are there any exercises one can do? A routine, gestures to alleviate this floatiness?

[[La...]]

2.5 years off and still so dizzy / lightheaded. Feels like I’m gonna fall out at any moment. I never do but it’s scary bad sometimes. My eyes don’t wanna focus.  Feels like I am drunk except I am acutely aware of how I feel. My problem is likely vestibular but nobody can fix it. Can’t tell me what’s wrong but offer more drugs. I fear this is my life from here on out. I wouldn’t even dare drive in this condition. Was given a brain MRI that came back “normal”.  I suppose the problem is that the affliction we have can’t be seen by conventional medical technology.

 

Feels like the ground is coming up to meet me. Knocking me around. Also, the tinnitus is off the chain today!

Wow sorry you're still dealing with this, Hopper. I know you're tired and frustrated too. Have you had any relief in the 2.5 years? Any changes of intensity? Have you tried vestibular exercises? They didn't cure my boatiness but it helped in other ways. It looks like our vestibular system takes it time to heal. I used to be very dizzy plus boatiness plus pulling sensation but now I have milder boatiness and pulling ( varying in intensities). Chair yoga on YouTube also helped me. You're right, all of the tests and scans will come back normal most of the time because it's not damage they can see on an image. It's down regulated receptors and the lack of their functions because of it. I know you don't think you'll heal after this long but I've read many posts that did. It seems those of us who have vestibular symptoms as our worst take longer to heal. It makes sense because the ear has a very very very delicate balance. The mess we took were highly toxic to that area. If you think about it, that's much repair to be done from years of damage. I hope you're taking precautions not to fall or get hurt until it goes away. My heart goes out to you. I also have the constant tinnitus. When I'm in a wave, it increases. Hang in there. Don't give up! I know how you feel. These symptoms have me bedridden.

[[La...]]

Are there any exercises one can do? A routine, gestures to alleviate this floatiness?

Chair yoga on YouTube helped mine a lot  I used the ones for beginners that old people do. They were surprisingly fun, easy to perform and didn't wear me out. I loved the Sherry Zak Morris channel called YogaJP. Very fun! Great songs!  I did these once a day. And a little bit of beginner tai chi movements to help my brain compensate. Btw, both of these can be done while lying in bed if you have someone hold up the video for you. 

But I also want to say, it simply has to heal with time. Those exercises helped me to deal with it. 

[[Ho...]]

2.5 years off and still so dizzy / lightheaded. Feels like I’m gonna fall out at any moment. I never do but it’s scary bad sometimes. My eyes don’t wanna focus.  Feels like I am drunk except I am acutely aware of how I feel. My problem is likely vestibular but nobody can fix it. Can’t tell me what’s wrong but offer more drugs. I fear this is my life from here on out. I wouldn’t even dare drive in this condition. Was given a brain MRI that came back “normal”.  I suppose the problem is that the affliction we have can’t be seen by conventional medical technology.

 

Feels like the ground is coming up to meet me. Knocking me around. Also, the tinnitus is off the chain today!

 

Everything you're saying sounds like what others around here have said. I know how frustrating it is not to have any answers, but it IS good news that nothing bad was seen on your MRI. Most of us have "normal" results on our tests, which just shows that the tests can't/don't reflect certain kinds of dizziness.

 

Thank you for the reply Lapis!  Yes, very frustrating and sometimes debilitating. I really thought I would be feeling better than this by now!

[[Ho...]]

2.5 years off and still so dizzy / lightheaded. Feels like I’m gonna fall out at any moment. I never do but it’s scary bad sometimes. My eyes don’t wanna focus.  Feels like I am drunk except I am acutely aware of how I feel. My problem is likely vestibular but nobody can fix it. Can’t tell me what’s wrong but offer more drugs. I fear this is my life from here on out. I wouldn’t even dare drive in this condition. Was given a brain MRI that came back “normal”.  I suppose the problem is that the affliction we have can’t be seen by conventional medical technology.

 

Feels like the ground is coming up to meet me. Knocking me around. Also, the tinnitus is off the chain today!

Wow sorry you're still dealing with this, Hopper. I know you're tired and frustrated too. Have you had any relief in the 2.5 years? Any changes of intensity? Have you tried vestibular exercises? They didn't cure my boatiness but it helped in other ways. It looks like our vestibular system takes it time to heal. I used to be very dizzy plus boatiness plus pulling sensation but now I have milder boatiness and pulling ( varying in intensities). Chair yoga on YouTube also helped me. You're right, all of the tests and scans will come back normal most of the time because it's not damage they can see on an image. It's down regulated receptors and the lack of their functions because of it. I know you don't think you'll heal after this long but I've read many posts that did. It seems those of us who have vestibular symptoms as our worst take longer to heal. It makes sense because the ear has a very very very delicate balance. The mess we took were highly toxic to that area. If you think about it, that's much repair to be done from years of damage. I hope you're taking precautions not to fall or get hurt until it goes away. My heart goes out to you. I also have the constant tinnitus. When I'm in a wave, it increases. Hang in there. Don't give up! I know how you feel. These symptoms have me bedridden.

 

Thank you for the reply LadyDen! I’m sorry you are still dealing with this as well!

I went to vestibular therapy but I didn’t get any relief there. I do have windows where it isn’t as acute as it has been today. When I wake up to the immediate tinnitus raging and the inner body vibrations, I know I’m in for a rough day. Mornings and evenings are usually the worst. Hoping for better days ahead for all of us!

[[Be...]]

LadyDen, were you able to take the car ride to your new home yet?  I do remember those circle centrifugal rides.  They'd even drop the floor when the speed got high enough.  I didn't like them much. 

[[Je...]]

What I don't understand is that I've been having bad dizziness for the last twelve days, 7 weeks after CT. During what was supposed to be the acute phase, it was was very mild and exceptionnal. Two weeks ago, it started to be more noticeable and frequent, but would go away after a few minutes of walking.

[[La...]]

Are there any exercises one can do? A routine, gestures to alleviate this floatiness?

 

With the vestibular rehabilitation exercises, it's best to have a consultation with someone who has expertise in this area, e.g. a physiotherapist. They would need to assess you and figure out what might be helpful in your particular case.

[[La...]]

Not yet Becks. I'm waiting on this pulling to give me a break then I'm going to go for it. It does take short letups to the point that it's nearly gone. Although I'm still boaty. I hope you're doing well today sweetie!

 

Jelonek I did a very slow taper over a 10 month period. Several bad symptoms I had in tolerance and interdose WD left. After jumping I felt pretty good for about 2 weeks then acute set in hard! This delay after jumping or C/T is not unheard of. I'm not surprised that after 7 weeks, you're getting more or different symptoms. You're very early in acute. Please try to do the best you can to prevent falling. That symptom ( dizziness) for me popped in and out then left. Time is your best friend to heal.

[[La...]]

What I don't understand is that I've been having bad dizziness for the last twelve days, 7 weeks after CT. During what was supposed to be the acute phase, it was was very mild and exceptionnal. Two weeks ago, it started to be more noticeable and frequent, but would go away after a few minutes of walking.

 

Hi Jelonek,

It's certainly not a linear thing, which of course makes it confusing for all of us. Ashton referred to this lack of linearity in her manual, and it's evident in many posts here on BB. People talk about waves and windows, or different symptoms being more prominent at different points along the way. Very frustrating, for sure.

[[Je...]]

Not yet Becks. I'm waiting on this pulling to give me a break then I'm going to go for it. It does take short letups to the point that it's nearly gone. Although I'm still boaty. I hope you're doing well today sweetie!

 

Jelonek I did a very slow taper over a 10 month period. Several bad symptoms I had in tolerance and interdose WD left. After jumping I felt pretty good for about 2 weeks then acute set in hard! This delay after jumping or C/T is not unheard of. I'm not surprised that after 7 weeks, you're getting more or different symptoms. You're very early in acute. Please try to do the best you can to prevent falling. That symptom ( dizziness) for me popped in and out then left. Time is your best friend to heal.

 

I'm super glad it left for you! I peristently don't understand how long the acute phase is considered to be though ^^

[[La...]]

It's estimated to be up to a few months. theres a thread phases of WD if you'd like to take a peek. Perhaps Lapis knows the range.

 

Hugs to you Lapis! I pray you're doing well today. How are you feeling?

[[Je...]]

I'm back from my physical therapist. I talked to him about this dizziness. He gently pushed me in different directions, and there is one I don't react to -I do not recenter. He's also made me follow a ball with my eyes, and my eyes were very slow and it was really tiresome, and when the movement stopped I did not have the normal eye movement (nystagmus)

He was very concerned.

The doctor I saw last week just wrote prescription letters for a neurologist and the like that I won't see before 4 months.

[[La...]]

Jelonek this is a good report in the sense that at least your doctor see that you're not crazy or faking, etc. It is a very concerning issue. I don't want to sound discouraging but nothing they do or give you will resolve it. Only time. As I stated before, sometimes vestibular exercises can help in certain ways but this doesn't help everyone. But what it does if you perform them is show your brain how to not react so wildly when using your head and eyes. That's the benefit it had for me. It took away my fears of falling. It gave me a safer way to navigator. It gave me exercises to do so I had a sense of helping myself. It did not cure my dizzying or boatiness. There are some home exercises you can do on YouTube. As soon as I'm able to, I'm going to start back walking and chair yoga on YouTube to regain my strength. It's funny that exercise is a great healer but I can't exercise! Well, not upright.