Anyone else have positional tinnitus (tinnitus that worsens with standing up but gets better with lying down)?

[VerdantPikmin]

 

Hi everyone!

When my POTS symptoms first started, they started very gradually, over years. The tinnitus would completely go away within 10 minutes of me lying flat. If I sat up or stood up, it'd gradually return. As the years passed, it got worse and took hours of lying down for it to completely go away, rather than minutes like before. Since 2019 it got the point where it's 24/7 now, but I still notice a difference if I've lied down through the night. It gets worse after any exercise, after I've ate or when I'm stressed. The worst it ever was when I was just about to faint. 

Sometimes if I've been lying in bed for a while and I get up too suddenly (ie, I get a phone call) the ringing will get 3 times worse and stay like that for an hour, even if I quickly go back to lying down. Hearing is normal and I've had many tests done.

Blood pressure is very erratic, sometimes my standing blood pressure is something like 96/91, other times it's 179 over 126. Lowest my resting blood pressure was is 58/37 with a pulse rate of 147.

I don't have a CSF leak, that was extensively ruled out, I've had many scans, with and without contrast, and had two blind blood patches which made me worse, each time I had one the ringing was worse and the muscle twitches would get bad almost instantly. 

When I talk to my ENTs about the fact my tinnitus was strictly positional (going from screaming loud to literally vanishing just from lying flat for a while) they look at me like I've got three eyes. It's one of my worst symptoms and I'm still trying to make sense of it. 

[Pistol]

@VerdantPikmin I get this ringing when I get up too fast from bending pver or when I am close to passing out. It is said to come from nor enough cerebral circulation. IV fluids have helped me greatly with this symptoms.

[VerdantPikmin]

On 7/9/2023 at 11:54 AM, Pistol said:

@VerdantPikmin I get this ringing when I get up too fast from bending pver or when I am close to passing out. It is said to come from nor enough cerebral circulation. IV fluids have helped me greatly with this symptoms.

I see a new cardiologist later this month so I will ask them about this thank you. Getting up too fast out of bed can make the ringing much worse for an hour or two even if I immediately go back to lying in bed. Even if I'm sitting up in bed (such as using a laptop) it causes the ringing to gradually get worse so my head has to be level with the rest of my body or it just gets worse. Even then on some bad nights it improves little if at all. drives me nuts 🙃

[MoldBoy]

This could be a simple neck or spine issue. My symptoms get worse when I don’t take care of my spine. Also, I tend to get sinus infections when I don’t take care of my spine too so doing frequent sinus flushes with salt water and colloidal silver helps but I have to do them when I don’t have much symptoms also.