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Always off balanced !! Please help

Posted , 5 users are following.

AnxiousEshhh
AnxiousEshhh

Hey everyone! About three months ago I went on a weekend away with friends and we were staying in a high rise, so therefore I went in an elevator numerous times. I remember saying to my friend that the elevator made me feel really weird. For example I felt like I was still in the elevator even hours after not being in it. I didn’t think much of it at the time but then the next day when I was at work, I randomly started feeling really off balanced and every time I took a step it felt like the ground was rising. I ended up going to the hospital via ambulance as I have a benign cyst in my left temporal lobe so thinking the worst I thought maybe it had something to do with that. Anyway, at the hospital the doctors did numerous testing, including, blood tests, vertigo tests, looked at my blood pressure, oxygen levels, my heart, ears, the whole lot but everything came back fine. This is where the intense anxiety started. I went to my gp and told her everything, so she referred me to get some more blood tests done and I also got an MRI, (I get one every two years just to check on the cyst and was due for one anyway) When the results were in I went back and was told everything was normal, although my iron levels were a little bit low, so I was put on iron supplements which I took for around 3 weeks, but other than that I was told everything was perfectly fine including the MRI. Through all of this the unbalanced feeling had persisted and my anxiety turned into pure panic. I ended up going to another gp whom prescribed me 5mg of Valium for the panic, of which I take half when I really need it. Anyway, I felt a bit better at first (thanks to the Valium I assume) but the off balanced feeling is not going away. It is constantly there, it feels like I am swaying when I’m not, it also feels like the ground could give way when I’m walking or standing still, I find myself walking oddly because I’m scared that I’ll fall over although I never do. I find my legs ache and feel weak because I stand oddly. I am perfectly fine whilst laying down but when I’m up it’s there, even sitting down I can sometimes feel it, it seems to be at its worst when I’m standing completely still. I also often feel as though the ground is moving from underneath my feet, and this really sets my anxiety off.

I’m honestly at my wits end with it all, I haven’t been able to work, I barely leave the house and I’m scared that I’ll never figure this nightmare out. I’ve always been an anxious person but I have never experienced this off balanced feeling before and it’s really ruining me. I should also mention that I was a chronic marijuana smoker for roughly 5 years and I’ve been completely off it for 5/6 months now, I don’t know if maybe that has something to do with it? But my gp doesn’t seem to think so, they all seem to believe it is anxiety related.

So, if anyone has any similar symptoms/ experiences please reply or message me as I am desperate! Also, I’m sorry about the super long post, thank you if you made it this far haha.

0 likes, 9 replies

9 Replies

  • Rebecca7777
    Rebecca7777 AnxiousEshhh

    Posted

    You might want to read about Mal de debarquement

    I have no experience with it, but it sounds similar to what you describe.

    Hope you feel better soon.

    Moderator comment:I have deleted the links to the images as they went to a site unsuitable for inclusion in the forums. Users can upload images directly to this site by using the image icon at the top of reply boxes.

    • AnxiousEshhh
      AnxiousEshhh Rebecca7777

      Posted

      Hey! I have heard about this, but I was calling it disembarkment syndrome. It is very interesting. I do believe that the elevator definitely triggered all of this. I do remember feeling a little bit off balanced here and there before the elevator however it was never constant like it is now, and I thought that it was because I was smoking too much marijuana. Thank you, I hope I feel better soon as well.

  • maria61198
    maria61198 AnxiousEshhh

    Posted

    I hate it when doctors put so much down to anxiety. If you can find an inner ear specialist who can do the caloric test as well as hearing tests etc. It's seldom that anything shows up on the CT scan or the MRI. If you can find a vestibular rehab near you, they are very helpful. Meanwhile, try to keep moving, that helps the most when you are dealing with this. Go for walks even if it's just around the block. Good luck and keep us posted.

    • AnxiousEshhh
      AnxiousEshhh maria61198

      Posted

      Yeah, me too! It's really annoying because I do know that I am anxious which probably isn't helping the off balanced feeling at all however I felt off balanced before I was anxious. I will definitely look for an inner ear specialist. What is a caloric test?

      I've been trying my best to keep moving, it's hard because the off balanced feeling makes me so anxious and at first I was really bad and hardly left my bed, but now I've been pushing myself to do more, even just little things like cleaning up and doing balance exercises, but I am going to try and start going for small walks as well. Thank you for your reply! I really appreciate it!

  • teresa03176
    teresa03176 AnxiousEshhh

    Posted

    this happened to me exactly back in 5july last year just after I turned 50!! everything you describe! 12 consultants later I got my diagnosis!! vestibular migraine!! I had all the test you had !! I haven't worked since!! I also developed tiniest 3 months later!! the anxiety plays a big part and diet!!! I'm 6 months in and still trialing drugs that might work. you need to find a vestibular neurologist who specializes in this are! I'm lucky I have bupa. if you look up professor owen judd and his life style change re vestibular migraine it has lots I formation. it's a silent migraine even though dont get migraine with the condition. I no it's very scary and will involve adjusting g your lifestyle! research vestibular migraine and I think you will very much relate to it. please ask me anything you need to no as I no very stressful it is. I'm actually seeing my consultant tomorrow to try a new drug, unfortunately he doesn't take bupa patients so I have to pay but worth every penny. are you in the uk??

    • AnxiousEshhh
      AnxiousEshhh teresa03176

      Posted

      Oh wow, that is really interesting that you mention that because I have a history of suffering from extreme migraines. I haven't had one for years and years but when I was younger I got them constantly, that is actually why I started getting MRI's and how they discovered the cyst in my brain. I have noticed that since I have been placed on medication for my anxiety the off balanced feeling hasn't been as bad but it is still there. I've also started feeling a bit weird in my eyes. I am so sorry that you are also going through this, it is so scary and it makes it so hard to remain calm. I live in Australia. I may end up messaging you as it makes me feel better that I am not alone. Thank you so much for your reply.

    • AnxiousEshhh
      AnxiousEshhh

      Posted

      Also, I will definitely mention this to my doctor, look for a vestibular neurologist and look up professor Owen Judd. Once again, thank you for replying!

  • Rebecca7777
    Rebecca7777 AnxiousEshhh

    Posted

    Anxious,

    What you are describing sounds kind of like "Mal de debarquement". This is a condition where you feel constantly off-balanced and a constant illusion of movement, usually right after travelling on a boat, plane, train, elevator, etc. I tried to post the link to the description of this condition on the Vestibular association's website.

    • teresa03176
      teresa03176 Rebecca7777

      Posted

      yes sounds similar thank you for info; vestibular migraine is slightly different as in you developed tinittus as part of the condition, I have actually had a diagnosis from my neurologist and receiving g treatment . fingers crossed it works

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