Trouble with telling doctors exactly what I'm feeling...sounds silly but I'm hoping someone can relate.

[My Journey]

I have been diagnosed with Dysautonmia.

From what I understand…Dysautonomia sends incorrect messages to different parts of the body.

When talking about my balance problem…I describe it as a wavering feeling (for lack of a better word, some feelings are hard to explain) in my head, sometimes affecting my eyes, and usually, there is a tension in my head also causing that unbalance.

To me, this is not a lightheaded feeling or a vertigo feeling, as some would say. As I know what lightheadedness feels like. I was lightheaded when I was not feeling well a time or two, and years ago, one morning, I tried to get up, and the room was spinning, and they said that was vertigo.

Am I having a Dysautonomnia experience…reaction. Perhaps one would have to know what Dysautonomia feels like to know what I am trying to say. I’m not sure.

 

[MTRJ75]

I often say that if I didn't have it, I wouldn't understand it either. I can't imagine trying to explain this to my younger, healthier self in a way I would have understood. I often have great difficulty trying to form a picture of symptoms that a non-dysautonomic individual could understand. I'll often try analogies (like an old car in cold weather or dropping on a roller coaster), but I'm not even sure some of these symptoms have words because it's not really ever pain in a way most people would understand. 

[Picklesquish]

I know exactly what you mean! I also use the analogy of a bike not being able to find the right gear when explaining how my heart feels,

[Pistol]

I have two different experiences of feeling unbalanced: one I can accurately describe as feeling like suddenly a trap door opens and I fall into a void. The other one is more complicated because it feels more like my body gets dragged into a certain direction as if pulled by a magnet - and if there is a wall in the way I will hit the wall. Sort of like people act when they are drunk. 

[MeAgain...]

First, I can totally relate to not being able to explain to others what I am feeling. I have that problem all of the time. I get one sensation which I think is due to vestibular migraine where for a moment it looks like everything is moving away from me and a little to the left. It is not a tru vertigo sensation of spinning.  I used to get the trap door feeling like Pistol describes. I had a very minor ear surgery and I have not felt that sensation since I woke up from the surgery several years ago.

It is hard for anyone to say what is causing you to feel the way you feel. Finding the right doctor or doctors is not the easiest thing to do, but it can get you started in finding a solution to the problem. If not a cure, than at least know what is causing it and how to work around it. Just keep in mind that it is entirely possible to have a couple of different medical issues causing what appears to be a cluster of symptoms. It is also possible to have treatment for an issue causing other problems like side effects of medication. For problems with balance it might be helpful for you to see an otolaryngologist experienced in diagnosing vestibular disorders.

[Salieri]

I get paresthesia and it can be pretty painful. So I describe it to people as standing in a hill of fire ants. For my pounding heart, I describe it as being repeatedly punched in the chest (which resulted in my now ex-husband punching himself repeatedly in the chest and telling me it wasn't that bad. That's not a normal response by any means but it definitely illustrates the lengths people are willing to go to prove you wrong about how bad this stuff can be). For what's not really vertigo but still ends up being some kind of dizziness, I liken it to walking on a boat before you have your sea legs. For blurry vision, it's like opening your eyes underwater. For my muscles spasms, especially the ones in my hands, I tell people it's why I'm so good at opening pickle jars: my hand just will not let go. It is currently trying to crush my phone as I write this. For when my legs feel very suddenly weak, it's like somebody came up and kicked me behind my knees. It is really hard to stand up if somebody has done that to you. Sometimes my voice doesn't want to work. I sound like I'm deaf. People will treat me like I am when that happens. When I describe it to a doctor, it's like my mouth is entirely filled with peanut butter. And finally, because I heal so very slowly and am suspected to have ehlers danlos, I explain my poor spelling and grammar on the fact that I am currently typing this using my voice (which works most of the time now) due to a violent shoulder injury. 

I personally have found that likening it to inanimate objects doesn't get me too far. But that is definitely a personal preference. It doesn't make the explanations other people find useful any less valid.

[MTRJ75]

Here's another one. I tell them to take their hand and smack a sturdy table or counter top. The ringing they feel in their hand afterward is the same thing I feel throughout my entire body after physical activity, which is the inability of my nervous system to shift gears. 

[MikeO]

I just fumbled at trying to explain what i was feeling while talking to my Dr before my angiogram last Tuesday. So i took a deep breath and took a second try and put things into terms that he would understand which were the cramping was occuring in my left leg and my concerns that my previous iliac artery intervention did not hold. This worked and he addressed my fears well.

[MeAgain...]

A picture can say a thousand words. One of the sensations I get is capured perfectly well in Hitchcock's Vertigo. If you can't explain it in words, show a clip.

https://www.wired.com/2014/08/***-just-happened-vertigo-effect/

I also saw somebody posted this picture online. I wish I could credit the creator. I related to it so well that I am taking it in to my next appointment.