Author Topic: Dizziness problems (need your help)  (Read 633 times)

Pathfinderqc

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Dizziness problems (need your help)
« on: April 20, 2020, 12:22:32 am »
Hi guys! Im erick and im 27 years old. I am military and a very active person. I always been olympic weightlifting, crossfit since 7 years now. But since 1 year and a half now, my life has changed and I almost had to quit my military career (lucky that I had the most amazing boss and doctors to help me out). I wanted to know if some of you have the same type of dizziness as me. All my story started on a day that i took an open elevator. I got out of the elevator and felt that i was jumping and swaying right after for about,,, 1 month. That was insane and that is how my dizziness started. Since then, I always get dizzy when walking, running, feels like after walking or running that the world is on reverse and that i am walking backward when standing still after a long walk/run? I also Feel like I am disoriented after a walk/run/intense crossfit workout,and I am really not out of shape. When it happens, I just sit and wait. Sometimes, the same feeling happens in a shopping mall, a busy restauramt with a lot of noise or visual noise, etc. Also, my heart is 100% healthy and every test in the world were done. All this stuff started when my dizziness started in general, and I always been in great shape and nothing changed I also  get a lot of rocking/swaying sensation, even being in a bath makes  me dizzy (the small movement of water makes me feel that I am swaying) Sometimes, even sitting on a toilet makes me feel like that because of the way that the toilet is made and that it does just not feel right for my vestibular system? Im not too sure how to describe it but wanted to know if these symptoms happens to some of you? My neurosurgeron told me its because of my AN even if it is relatively small (15mm). Also, sometimes, when I wake up in the morning and that I just opened my eyes, i sometimes
Gets a little spinning vertigo but it does not last and is really small , like 1/10. I also started getting really anxious when all that dizziness started and that the doctors didnt know what I had for more then a year. I also saw that alcool, even just a little, makes my swaying/rocking come back, too much sugar, like litteraly anything that is unhealthy. also, having a cold and stuffed nose makes my dizzines come
Back. I also tend to get dizzy on supermarket when there are a lot of stuff in my vision, like crowds in a shopping mall. I am not agoraphobic so its not anxiety, its really happening when i see a busy environnement or like a carpet with a lot of design on the ground. Sorry for my bad english, I am french canadian hehe. I also want to say that my dizziness is 90% better and im still that active old boy like i was, but everything i do now comes with a little percentage of dizziness, some days ae better then others, and i chose not to be operated. Like I said, thank you to whoever took the time to read me , and wanted to hear your story about dizzy spells and if some symptomes of my dizziness looks like yours ( i would really like if you could answer if you feel that my text fits you, as I have anxiety now and im starting to ask myself if its really my schwannoma) thank you very much everyone :)

Erick
« Last Edit: April 20, 2020, 12:52:45 am by Pathfinderqc »

judyette

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Re: Dizziness problems (need your help)
« Reply #1 on: April 26, 2020, 11:45:31 pm »
hi Erick.  I've had similar feelings of dizziness as you describe, in somewhat similar circumstances.  in the shower, the movement of the water rushing out of the showerhead so close to my eye, causes me to feel dizzy and disoriented. I worry a lot that I'm going to lose my balance and fall in there.  every time I have to go in or out one of those doors that open automatically in front of me, like at stores, I always get waves of intense dizziness/disorientation.  and in the stores where there is a lot of visual noise, as you say, and just noise in general.  I had to stop driving on the freeway because I'd get the waves of dizziness when driving at high speeds and seeing all the traffic around me moving at different speeds, directions, and angles.  like in my rearview mirror, and traffic going the other direction on the other side of the freeway, and driving under traffic on overpasses, and then the commuter train running alongside the freeway also going at a different speed, all of this at once is too much!  usually, if I'm sitting down, with my butt planted firmly on a chair and feet on the floor, I'm ok. But not when driving.  it's just too much movement going on around me for my brain to figure out where my body is and what it's doing.  Even the windshield wipers on continuously cause the waves of dizziness, and I've stopped driving in heavy rain.  I can handle them on intermittent, where they go and then stop all the way before going again.  sometimes I have to turn the driver's side mirror away, because even a glimpse of it in my peripheral vision while driving forward, under the right conditions, will cause the dizziness.  needless to say, for safety reasons, I've cut out driving except to close-by necessary grocery shopping and then I take the residential back streets.

My AN is smaller than yours, but is growing laterally out of the IAC, into the cochlea.  I've also decided against surgery or radiation, so am just trying to get by as is.  I've not had a cold for a good long while, but I do have allergies, and have noticed recently that my balance and dizziness/feelings of disorientation are worse on bad allergy days.  Storms coming in make my ear hurt, sharp stabbing pains, probably because barometric pressure changes (I'm just guessing).  also, being tired makes a Huge difference.  The later it gets in the day, especially if its been a long tiring day, the more I'm falling around, feeling disoriented and dizzy.  had to stop showering at night before bed, and move that to mornings only.  Another change I've had to make is the speed at which I do things.  I've had to slow way down.  if I try to walk too fast, or even turn my head too fast, instant dizziness.  I've only had what I think is true vertigo a few times.  Once playing with my cat and swinging her toy that's attached to the end of a long stick around too fast, then my head started spinning around too and I had to lay on the floor for awhile to make it go away.  and another time when my grandson started twirling around on a pivoting barstool in front of me.  just seeing him do that was instant nausea, dizziness, spinning. 
I think it's only natural to feel a bit of anxiety about these things.  I drink calming teas and take frequent breaks and just try to be as nice to myself as I can.

judyette

golfguy49

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Re: Dizziness problems (need your help)
« Reply #2 on: April 29, 2020, 05:52:12 am »
Erick - 15mm is not that small.  You should talk to an otolaryngologist instead of a neurosurgeon.  They are are more skilled and specialized than neurosurgeons assessing and talking about ANs.  I do think is it your schwannoma that is the cause of you dizziness - I had a 14mm AN and was frequently dizzy for 2 years.   I had it removed in January 2020 via surgery and I was very dizzy afterwards for about 6 weeks, but PT helped and I am able to do normal things now.  Doing exhausting things will still make me dizzy, but overall it still seems to improve ever week just a little bit.  I am expecting it to take about a year before I know where my true new baseline is.  I had retrolab procedure and it saved just enough hearing in my ear for a hearing aid, and 100% of the tumor is gone.  Good luck.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

Greece Lover

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Re: Dizziness problems (need your help)
« Reply #3 on: April 29, 2020, 08:06:28 am »
I definitely find it to be the case that anxiety can make my balance problems worse. Also impacted by sleep, weather patterns, etc.

Where did you see a neurosurgeon? could you seek a second opinion somewhere?  It can be the case that balance can improve after treatment, although not always.

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

Pathfinderqc

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Re: Dizziness problems (need your help)
« Reply #4 on: April 29, 2020, 08:30:59 pm »
Oups i dont know if i said it right. My neurosurgeon said « yes » that my schwannoma was making my symptoms, and the ENT surgeon said the same thing to. They also said that 15mm is considered still small, as 25mm is considered a medium sized. They also told me that smaller AN cause more symptoms, because parasite signals succeed to pass signal, while big AN block signals completly. That is why they said I had more dizziness (i have no hearing loss, only intense tinnitus at time that seems to come from INSIDE the middle of my head (reallly messed up feeling lol)



(Erick, had to clean up the language a little at the end in the parenthesis..... I know you understand! Thanks! Phyl)
« Last Edit: April 30, 2020, 06:27:19 am by ppearl214 »

kzanana

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Re: Dizziness problems (need your help)
« Reply #5 on: August 01, 2020, 01:14:20 pm »
I have all the same exact problems as you are describing and my AN was actually in my balance nerve. None of my symptoms went away after my surgery in 2008. Its tough to live with but I’m thankful everyday I’m still here.
    No type of medication has ever helped and right now I’m not even taking anything for it. I’m sorry you have to deal with this at your age but happy it didn’t end your career.

 


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