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Posted

Does anyone have the symptom of losing their hearing for a few minutes? For me it does not happen just when laying down and getting up, but it has to be slightly different. For exmaple, one time I was doing dumbbell presses on a bench press on my back and when I got up I lost my hearing for a few minutes. It was very scary. My vision stayed.

Another time it happened I was doing dysautnomia testing and blowing into a device and when I finished the testing and got up and started walking I lost my hearing, but only about 40% instead of 95% like when I was doing the bench press and got up.

There must be something specific that has to be done to provoke it, but it is tied to doing something intense in a certain kind of laying down position and then getting up.

I may mention that when my dysautonomia started I also developed tinnitus and shaking vision. I also have fatigue, muscle pain and many other symptoms of dysautonomia.

Posted

I have lost my hearing doing nothing, mostly it is when I do something with my arms above my head. It is almost like everything fades out. Mine doesn't last long, a minute at most. The tinnitus gets me. Again doesn't usually last but maybe 5 minutes but it kind of shocking when a high pitched noise starts in you ear. 

I know tinnitus has to do with nerves, so maybe it is just a jolt through the nervous system. 

My hearing loss feels like maybe pressure. So maybe there is a buildup temporarily and that causes the hearing to go out? 

I don't know but these are my best guesses. I just wanted you to know you are not alone. It would be an interesting conversation with a trusted doctor though. Maybe they have some insight. 

Posted

@CuriousThinker - this happens to me as well. I was told it is due to a sudden drop in BP causing circulation issues in your ear. The situations in when you describe it happens would lean that way as well. Try to avoid activities that could stimulate the ANS, such as straining, lifting, blowing etc. My sister gets this for days on end and needs to see an ENT for it - that might be a good idea for you also?

Posted

@StayAtHomeMom@yoginiI just saw my cardiologist at the dysautonomia center today and we reviewed the results of all the testing I have had. He said I did not have POTS, which is pretty much what I expected. I had no symptoms on the tilt table test either. He said I do have constitutional or neurally mediated  hypotension. He said I may have had this my whole life and it was missed. I told him I have had symptoms of bright/dark contrast vision and electric shock sensations and brain fog since I was a child and we could not find the cause. One doctor said it was mitral valve prolapse without regurgitation for the chest problem. I believe that is left valve area and also people with ME/CFS have low blood volume and smaller left heart.

 I know I have dysautonomia though because my sympathetic and parasympathetic nervous system aren't working causing anxiety, insomnia, dysrupted sleep patterns, lack of tears for eyes, digestion that doesn't move, fatigue on and on.

He said the purple hands and feet is blood pooling. He also said I have weak pulse and low blood volume. I know low blood volume is reported in ME/CFS.

He wants me to take two drugs Mestinon 60 half pill 4 times a day. and Florinif. I'm just researching them now as I write this. I googled Mestinon and it says it is a cholinesterase inhibitor, which I know what that means and am very familiar with because I'm extremely sensitive to choline and cholineesterase inhibitors and have discovered this because I'm extremely smart and hard researcher.

I am so sensitive to cholinesterase inhibitor inhibitors that eating any foods which are high in choline like eggs act like an extreme stimulant for me and give me insomnia. Further, any plants which contain cholinesterase inhibitors also function like a strong stimulant for me. Some examples are potatoes, blueberries, and there are many others. These stimulants give me energy, but also cause extreme anxiety and insomnia.  The head doctor who prescribed me this does not know this, but I told the first doctor who met me on the first visit about this.

I figured out this pattern after much observation of what I ate and research. I later found this website which lists choline esterase inhibitors. https://sites.google.com/site/annerwright/avoiding-cholinesterase-inhibitors

The problem is probably because the enzyme which breaks down choline of acetylcholine is not working correctly in my body. There has been research that shows people with dysautonomia have antibodies to g-protein muscarinic acetylcholine receptors. I talked to the labcorp technician at my rheumatologists office and she called her boss and found an unlisted test (so they say) for antibodies for the muscarinic acetylcholine receptors and I oredered that test a few days ago. I don't know the results. What I can tell you is that the listed test is for antibodies to the other acetylcholine receptors which are the nicotinic type. That is for Myasthenia gravis testing, not dysautonomia. 

Posted

@StayAtHomeMomThanks for letting me know I am not alone. I have tinnitus all the time now ever since the pain spread to my jaw and face from my neck and back. When the hearing loss happens I think I do hear a bit of tinnitus spike as well. Also, all my life I have gotten random tinnitus spikes which last about 30 seconds with no hearing loss. I believe they would often happen with a bad neck posture. I came to believe this happens to everybody because I have always had this, but I think it is not normal.

It is funny the doctor actually said something I was thinking as well when he said to take the drugs. He said I've probably never experienced what it is like to be healthy and I don't even know what it feels like. He also said that it probably prevented me from fully growing due to the dysautonomia. 

Posted

POTS and NMH are very similar/related conditions.  I wasn't sure if hearing loss for a few minutes was a common symptom of POTS, but it seems a few others here have it too.  You learn something new every day! As long as you mention the symptom to your doctor hopefully he/she would advise.

Posted

My hearing goes, followed shortly by my vision fading out. Immediately laying down or squatting always reverses it. I've always put it down to a sudden drop in BP.

It's pretty embarrassing when I have to squat every few steps while walking down the supermarket aisle!!  😂😭

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