Had dizziness over a year someone please help!

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Im suffering from dizziness, heavy head from over a year and a half now.. Im only 26 an its having a big affect on my life.. I cant walk alone without holding somebody and i avoid going everywhere because of it.. When i stand i fewl as though im going to fall over. Even sat down im dizzy! Ive had countless blood tests mri aswell but all clear. Seen a neurologist too who said its nothing.. Been to the ent aswell and they said i dont have no ear problems etc.. Ive been given medication for vertigo and all sorts none of which hav helped. Please someone shed some light on this so i can get my life back to normal. Its so frustrating having it 24/7 and not knowing what it could be.

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    So so sorry that you're going through this. Many of us have and are still battling it. I don't know if I can say anything that will make you feel better, but I've had this for 35 years. It is really hard. I too went through all the tests. All good. There were times I would be praying that they would find something, but they never did. I've had this so long that in my experience, this "thing" can get better on its own, but it does come back. Mine has never left me. It's improved, but teh it got worse. Then it got better...then worse...you get the picture.

    I really, really think some of us have something that nobody knows about (yet) and nothing can be done to get rid of it completely, otherwise many of us would have left this forum. I know how hard it is and you're not alone, though that's not much help I suppose. It's frustrating, but it will get better. It will take a while, so when it does, enjoy it as much as you can. 

    I suggest you still explore the inner ear possibility. Don't be fobbed off by doctors. In fact, you may consider a physiotherapist that deals with dizziness. Sometimes, it could make a huge difference, so make sure to explore this avenue. The other thing I suggest is to make inquiries with doctors or therapists (even psychiatrists) who deal with panic and anxiety disorders. Keep this on the back burner for now, but if seeing a therapist for dizziness doesn't really help, then try that. I know you might think it can't be anxiety, but this kind of anxiety is different from the anxiety most people feel. I read that anxiety can cause a problem with balance, for whatever reason. It may not go away, but I can tell you that with therapy and medication and a good doctor, you can definitely improve. It takes time unfortunately, but at least you can set the ball in motion. Try these 2 methods first, but make sure you can definitely rule out everything else first. Make sure you are given the all-clear regarding your brain, heart, diabetes etc etc. Then, and only then, start looking at the 2 things I mentioned. Good luck. I hope you feel better soon. It's hard to go through what we're all going through. Stay focused on your goals and set yourself little achievable targets. You can do it.

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    • Posted

      Hi bestie

      I read your post and you said you've had this for 35 yrs. do you mind if I ask some questions. What is it you have? You said it gets better but comes back. Did you have different sensations during each time it came back? I ask because I think I may have had dizziness in and off for years, as I had it the first time in 1999 for 4 months when my thyroid started to act up and in 2000 I was finally diagnosed with Hypothyriod, then it came back as bppv in 2009 and treated and went away, the in July 2015 came back but I knew immediately it was different as I had the rocking/swaying feeling through my entire body. I was finally told by my nuero-otologist who specializes in dizziness that I have MAV and slight mdds, I think he said mdds because of the rocking. Do you have different feelings with your dizziness? My rocking has stopped but now I feel like different thing at different times. Like feel leaning to the left esp when sitting, feel like I'm bobbing up and down when sitting, falling backward sensations when I'm standing and sitting, the backward feeling when sitting is usually when I'm sitting leaned back partially, have had positional vertigo about 6 weeks ago and had eply it helped, have neck, shoulders and head aches, floor feeling like it moving sometime when I walk, horrible anxiety that I just can't control at times, feeling like I'm going forward when sitting, funny most of my symptoms are when sitting and moving around, sinking feeling sitting and standing. I'm sure there's more but I think you get the gist of it. I guess my question is do you have different sensations not just same thing all the time? Are you on any meds? I just start propranolol about a month ago it's only 10mgs sense I'm so afraid of meds and always have side effects, I'm assuming the ENT will up the dose this week.

      I know having hypothyroid and health anxiety can overlap in things. But I hoped you could share somethings that may help and maybe my worry about every sensation can stop being so bad. Thank you for any help.

      Oh I also have been doing VRT for 6 months

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    • Posted

      Hi Patty, to be honest, I have no clue what it is I have. I first had a REALLY BAD dizzy spell in November 1981. The moment I calmed down from that attack, I immediately noticed something wasn't right with how I felt internally and I suppose externally as well. My balance wasn't right, something which I still have to this day. Had all tests done. All normal. I've tried everything to help, hypnosis, acupuncture, therapy etc. Nothing really helped. Then after a few years, the dizzy attacks stopped. The lightheadedness reduced. The unbalanced feeling reduced. The bobbing, swaying, being pulled one way, leaning one way, brain zaps, falling inside a hole...everything reduced. It didn't go away, just a dramatic gradual reduction. I started playing football again (soccer). This reduction was natural. No doctor, no medicine. I still had occasional problems, but compared to the misery of the previous years, this was total freedom! This lasted a few years. Then, in 1991, it came back. Again, I was lightheaded, drunk, staggering all over the place. Bumping into things etc. In 1992, I saw a doctor who told me I have an anxiety disorder. It didn't make sense to me. For example, when I lay in bed at night, I felt my head on my pillow but it felt as if my feet were pointing to the ceiling, like a 45 degree angle. When I closed my eyes, I felt like I was flying through the air at 200 miles per hour. How the hell does one go to sleep? Anyways, he prescribed Imiprimine and Xanax. Within a few days, I felt SOOOOOO much better. Again, I stress that I wasn't cured. Just like the previous time, it was so much reduced with occasional problems. I could live again. Then around 1996, I had more problems. Nothing I could not handle, but I called my doctor again. I was seeing him when he suggested I try Paxil. This changed my life and I wish I never took it. I had a panic attack in the subway. It happened again and again. My balance was going again. I then became agoraphobic. To this day, despite working so hard, I am still agoraphobic. Each person is different. I'm a bit of a wuss I suppose, but after some really hard work, I had a bad spell and it brought me back to square one. It happened again and again (improve; something bad happens; THUD!) I have no more strength and bravery and I now have virtually given up. I get angry and depressed a lot, but you'd never know if you met me. Anyways, I've come to the conclusion that what I have (others may be different but similar conditions) isn't ever going to go away. I don't know what I have and I don't think anyone else does either. My guess is that it started out with something in the inner ear and I picked up panic attacks along the way and eventually became agoraphobic. It's like I have two other unnecessary conditions because of the initial thing.

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    • Posted

      Hi Bestie, I relate 100% to the agorophobic bit. So sensitive to light, sound, jumpy, that I can barely tolerate people, conversations, the world. Everywhere I go, I don't want to be there, and am just tolerating as much as I can, in hopes that my symptoms lessen for a few moments, but when I'm having a bad / jerky day (which are way More then the tolerable days) it never really lets up at all. 

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  • Posted

    Does this dizziness come after labour or surgery or just came suddenly out of the blue? What medicines have you tried? Is it constent lightheaded ? Do you fee off balance or just spining feeling?
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    • Posted

      I have it constant.. Feel off balance an it just came on randomly one day and hasnt gone since. Ive had stemetil, cinnarizine, betahistine dihydrochloride, cetirizine
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  • Posted

    Hi rahela I've had all the test do all came back clear I did not like turning to the left I felt like I was being pull too the left I felt weird when I was out side. I seen a ENT he told me to march on the spot we my eyes closed we my Arms out straight count to 50 when I opened my eyes I turned to the left he said I've got a weak balance system have you had that done?I was swaying on the spot and felt like I was walking on a trampoline. I never had the spinning sensation just feel like the wall are moving up and down. Did the ENT send you for Vestibular rehabilitation exercises might help you

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  • Posted

    Welcome to the group. Lots of people have this. Theres no cure is why docs don't tel you anything. Rehab can help. But there's no magic pill. I have had it 10 years.

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    • Posted

      Was almost manageable. This last bout us real bad. Haven't been to work or out of the house since August 17th. Sept for doc apps. Left ear getting worse. Right ear over compensating. Vestibular testing shows may be menieres. No cure. Have a app to see a neurologist.

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    • Posted

      Vertigo is a symptom not a disease. Til they find out what's causeing it, they can't help you. Even then they may not be able to help. It all depends on its cause. When I first got it, they had no idea what ear was causeing it. The tests showed both ears reaction to vestibular stimulation to be almost the same. My therapist figured it out. Now it's very obvious. Left ear didnt respond to stimulus at all. Right ear went off bad. So my Left ear has gotten way worse over the years. Have a app with neurologist but have no idea what they can do. So far noone has done anything.

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    • Posted

      Hearing test, pressure test. Did VNG testing. Had MRI with contrast of my brain and sections of my inner ear. Cat scans. Plus the tests they do at therapy before they start vestibilar rehab.
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