I’ve searched the world over for someone who has these same symptoms but My doctors and I, can’t figure it out. I’ve had nearly ALL the tests, checked my heart, BP and brain… can’t find a damn explanation. I’m female, 37, considerably physically fit, and I’ve been having the following symptoms for 7 years now: when I’m angry, get startled or scared, too excited, having sex and near orgasm, or at the beginning of my workout, I get a ringing in my left ear accompanied by fullness and extreme vertigo, nausea and near vomiting is occasional. The symptoms can be constant until the attack is over, or it can come in waves. The attacks usually only last a few minutes and seems to go away if I chug water. I have to drink at least 3 liters of water or more, per day to avoid these symptoms, and I have to have consumed a minimum of 24 oz of water in the morning to avoid getting these attacks in the shower as well. I should also add that I have to have had a lot of water within the hour, practically on the hour to completely avoid these symptoms. I’ve had Tinnitus in my left ear for most of my life, I think I was 7 or 8 when I first noticed it. I’ve considered that chronic dehydration could be causing 100 % of this, but there’s the question as to what could cause that, I’ve had every kind of bloodwork, I have one of the healthiest diets I’ve ever heard of and everyone else is chronically dehydrated and they aren’t having MY symptoms… so this is a crazy mystery and I’ve nearly gone literally mad
Sorry to hear, any attempt at prescription medications for migraines?
Hello, and welcome. Certainly, an interesting post to read. Sorry to hear of your problems and, with my own long history of misdiagnosis, I can appreciate your frustration at the lack of a diagnosis. We are only a support group so cannot help with that. Cannot really think what to suggest. I assume you’ve had enhanced solution MRI scans of your ears? Assume you’ve seen both ENT and neurologists? You found us so do you think it could be VM/MAV? Do you ever experience migraines, cluster headaches or anything similar? Or has a close family member? Has anybody suggested you try migraine preventatives? Just on the off chance? They do say if the pills work it was MAV/VM you had! Helen
The one thing I thought of reading your post, have you had your hormone levels checked - not just thyroid but estrogen, progesterone, etc.? I’m 46 now but my full vertigo attacks when I had them were in my 30s, my chronic rocking imbalance issue didn’t start until I was 43. I’m toying with the idea that hormone fluctuation can possibly mess with water retention, not so much in the typical water retention symptoms but possibly with the fluid levels in the vestibular area? I’m totally not a doctor and am just starting on my road to recovery, but just wondering if you’ve noticed these symptoms worse at certain times of the month or if you’ve perhaps changed birth control, etc. Might be a route to consider if you haven’t already.
Hormone fluctuation messes …period! And there are lots of things that can stimulate hormone fluctuation IMHO. Migraine and excessive strenuous (gym type) exercise for another. Excessive water consumption too maybe that can dilute mineral and chemical levels in the body. Helen
Thanks for the tip! Yes I’ve had hormones checked and they weren’t perfect but also not severe, but that was years ago before I started experiencing this. but isn’t everyone suffering from some kind of hormone imbalance? But yes, it’s true, I’m more likely to experience my symptoms near or on my period.
Yes, I’ve seen ALL the specialists. The ENT does think that I could be experiencing VM. But why are they only caused by adrenaline? That’s why I have spent years being convinced I had some vascular issue even though I seem fit and healthy. I might want to mention that I was once diagnosed with severe PTSD due to being in multiple life or death situations. For many years afterwards I had powerful adrenaline surges repeatedly everyday all day and now I’m convinced it’s caused me to be on the verge of a stroke or something. My MRI scan did show two small hyper intensities but the neurologist said that they could have been caused by anything and it was not consistent with my symptoms. I will be going back in a year for another MRI to make sure nothing changes. As far as headaches, I have recently in the past 3 years been experiencing mild headaches and I mark them on my calendar. They do look suspiciously hormonal. I’ve had two kids and I was slightly hyper thyroid after my second one 4 years ago. I actually loved it, I had more energy and lost baby fat very quickly.
I’m just too Stubborn about medications, too many side effects. I haven’t even been on birth control for the last 15 years.
Welcome! Sorry to hear about the dizziness, it is definitely awful.
Adrenaline can cause large vasoconstriction, which can be a big trigger for dizziness. Adreneline is one of my biggest triggers as well, although I’ve never had it so strongly correlated to dizziness as you.
If I were you I’d look into trying Propranolol for at least a week to see if it can stop the adrenaline and stop your attacks. Even if you don’t take it all the time, you can take it before situations that might cause adrenaline rushes, which is exactly how it’s commonly used “off label” for performance anxiety. It can make you feel a bit weird during workouts, but other than that I find that it just calms the system a bit. It’s generally a very easy drug to try. I use 10mg as needed.
I think as long as you remain open to trying new things you will get better! I got better after trying many different things. Keep us updated.
Hello, have you had a tilt-table test for Postural Orthostatic Tachycardia Syndrome (POTS)? These symptoms tend to occur when sufferers are in the shower, and sufferers are instructed to drink large amounts of water to control their symptoms. I know you’ve had your BP tested, but sometimes POTS manifests as a change in heart rate rather than a change in blood pressure.
Thank you for that suggestion! I have heard of the tilt table but forgot to look further into it or ask my doctor. They did check my blood pressure in lying sitting and standing position but have not done that specific test.
My pleasure, make sure you get heart rate checked moving from lying to an upright position as well as your BP, if there’s something off there, they’ll likely send you for a tilt-table test. Hoping you get some closure and resolution soon.
If it is MAV you might just be about to enter a battle. MAV is extremely ‘stubborn’, believe me.
Having said that, best get something that looks more like a diagnosis before embarking on drugs as a long-term preventative for something you may not have. As @anders says it could be something like POTS. Doesn’t sound typical MAV to me, Helen
Your story and symptoms sounds very similar to mine. I was diagnosed with MAV. Always ringing in my left ear and dizziness when I get excited or stressed. Are you from NZ too?
I did do some reading on the symptoms of POTS… I will say they don’t really sound like mine but it’s not a bad idea to get the test anyway. I don’t get a racing heart very often anymore, unless it’s an occasional anxiety attack. My resting heart rate is reasonably low, in the 50s but that’s been due to a regular fitness routine.
No, I’m in the U.S.