I have had dizziness since September 15, started off with what they thought was a bought of Labrythitus and then been diagnosed along the way with pretty much lots of different things while they try to work out what's the cause?!
Had so many tests tried all the meds and still no closer to the cause! Apparently it's vestibular migraines (silent ones most of the time), all my tests are clear apart from I have hearing loss in both ears but it's wouldn't effect my balance or cause dizzy spells!
Anyone else fed up of trawling the internet looking for answers or trying to find someone who has the exact same symptoms so they can just sympathise or relate to how you are feeling.
I honestly don't know where to turn or what to try next, the doctor have basically said they just don't have the answer which is upsetting as I went from a healthy ish 35yr old to a blubbering anxious mess overnight.
Do I believe the doctors in what they say...! Nope not one bit, do I try to self diagnose? Absolutely all the time, I have managed to convince myself I have got everything from cancer to diabetes and yes I am still here 1yr later and still breathing so I should accept what they say but my mind is telling me nope you have something more serious as you shouldn't be feeling this way for this length of time 😢
Anyone else relate? Cc
I do not remember if you have posted here before. What did the hearing test show exactly? At what frequencies is the loss recorded?
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
I am taking Nortriptyline for vestibular migraine have you been on them
I have posted before yes! I have a cookie bite in both ears not sure the exact frequency!!
Yes I have tried them, did nothing for me, I'm taking sertraline and propanranol as the dizziness has given me anxiety! I have been prescribed Topamax but not taken it year as it's got some nasty side effects x
I am also in same boat. See my discussion thread and comments from other people to get some new idea for going forward. Hope this helps. Dont worry, everything will be well.
https://patient.info/forums/discuss/feeling-dizzy-and-off-balance-since-last-2-years-535455
Hi,
Can you check my case and advise me what could be the root cause of my issue. I can share all the test result with you if thats required. Thanks in advance.
https://patient.info/forums/discuss/feeling-dizzy-and-off-balance-since-last-2-years-535455
I doubted very much when the consultant told me my balance, vision was being affected by silent migraines. He was right, I was wrong.
Hi Emma;
This is definitely one crazy disorder. I know exactly how you feel, I have spent since last July 2015 looking for the reason why and how. I was a complete wreck with anxiety up until about 2 months ago and I finally had to accept that I have MAV, it took me forever to accept this, but when I did and I started focusing on not paying so much attention to the dizziness, it has started to let up some. I do have bad days still and the anxiety comes along with it, but now I just try to be nicer to myself and rest on the bad days, if it gets really bad I take a xanax to calm my nerves down. I am pretty much at baseline on most days which i can handle. I have just recently been given propranolol to take, 10mgs at night, i started with 5mgs because i am so worried about the heart effects, I forgot to take my pill last night, I've only been on them 3 days so missing that one I don't think is the end of the world. I noticed you are taking propranolol, is it helping you at all? I've been feverishly trying to figure out what it does for mav, I see it helps migraines but no mention anywhere about mav.
I think your right that the docs really don't know whats going on with us. I think the ear system and brain is to complicated for them to have a straight answer. I tell myself if there was something really bad happening they would know by the symptoms that we give them. Anxiety can cause the mind to think all those "what if" thoughts and make us crazy.
I hope you feel better and if you want to talk, I'm hear anytime.
Hugs
Patty
Only a year? Have had it every day for 10 years. Had tests done multiple times. Get hearing test tomorrow and results of VNG as well. You want them to find something so you have a answer. Same time you dont want them to find anything bad. One doc pushing you to go see another doc and having him say all tests are normal. Meanwhile boss calling the house wanting to know if your coming back to work. Wife trying to pay bills with no money and medical bills piling up for apps and tests that showed "nothing wrong". They got authorization from insurance company for my MRI which i had done. Then i got a letter saying it was authorized but that doent mean they will pay for any of it. I can so relate to what your feeling. Tho it probably doesnt help you much. Started PT and it hit me even harder. Way worse than ever before. Called to tell them ,cause my therapist said call if any problems, and its her day off. Someone will call you tomorrow. Meanwhile about all i can do is sit here and stare at the wall. Noone understands what its like cause they never had it. Sometimes i wish everyone in the world would have this for one day just so they could understand what we deal with for years.
You are definitely not alone. I have been dealing with this since December and I am not the person I used to be because all I do is worry about every little ache and pain, then the anxiety kicks in the dizziness starts. It is a vicious cycle that I just can't shake. If I know i have to go somewhere and I have to drive my day starts off with anxiety because I am afraid I will get dizzy while driving. I always wondered does the pain cause the anxiety or the anxiety cause the pain. It's crazy but I hope you and all of us feel better
I've been dealing with this junk for about 6 yrs now. First it was anxiety ..depression ..vertigo migraines. I've had CT scans..MRI ..blood work like you wouldn't believe. Checking for lupus , MS, Lyme disease. It started with anxiety..yes. Then that weird feeling of wanting to jump out of your body. Pacing back and forth. Couldn't eat or sleep. Palpitations. ..nausea ...lightheaded ..faint like feeling. Then one day at work..back in 2011 ...I felt this swaying while at my desk. The computer seemed liked it was swaying so I freaked out and panic set in. I couldn't be at my desk for long. Always stepping away and going outside. Felt like I needed oxygen to my brain. Now its super intense. My neck and shoulders hurt all the time. My head feels heavy ...unbalanced ..unsteady ..faint like ..headache ...eyes hurt as if I didn't sleep at all. Constant pain in neck ..everything from shoulders up. Even my face and jaw sometimes. I cry. I can't work.I barely drive. And its a challenge. I feel weak fatigue. Saw rheumatologists and said i may have fibromyalgia. Im miserable. I know Im not who I was before. This pressure in my head. I don't want to take meds. Neurologist prescribed topomax but I never took it. Im just fed up. It makes living difficult. This is an everyday battle. All day. All I can do is pray and stay hopeful.
Hi Emma,
Could you share your symtpoms. I think there are quite a few people out there that might be able to help. Example, do you have dizzy spells and if so how long to they last. Or do you have more of an imbalance dizziness that is always there. There are lots of different symtpoms and also many different conditions. Really sorry to hear that you are getting fed up. I can relate, it took me many years to get a correct diagnosis.
Hi Emma. I totally relate to what your saying and have suffered 4/5 years of this I was exactly the same trying to self diagnose and fearing the worst all the time.
I've tried a few diff tablets and now hopefully have found the right one!! Cinnarizine... There is such a thing as silent migraines you are not alone , loads of people suffer. Please stop stressing out as it will only make you feel worse
Can you provide me with the exact results of:
Audiometry
Caloric tests
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
Audiometry test is attached, blacked out name, details etc
Hi eleftherio33095 ,
12 Page ENG report attached..
Your audiogram is normal, and so that rules out labyrinthitis or Meniere's disese. I understand that your brain MRI was read as normal. I notice in the ENG report the mention of abnormalities with smooth persuit. Has this been commented on by any of your doctors?
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
No, ENT didnt bothered to discuss this 'Abnormalities with smooth persuit'.
he just told me a very little BPPV on left ear and to see PT. PT tried to see my eye movement and observed some movement onleft eye but that was less than second so it was very very minor. He performed epley maneuver two time and later I didnt had any eye movement. Then he focused on my eyes and he suspect I have VOR, gave me gaze stabilazation excersice which makes me more dizzy so I hardly do it.
Whats smooth persuit? can be this related to that?
Also attaching my brain MRI report. Let me know if you want to see any other report.
The deficit in smooth persuit would relate to the brain. However, sometimes such findings can occur if there is poor concentration from the patient.
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology