Constant dizziness

[Bailee]

Anyone know how to treat dizziness. It’s not even lightheadedness more so when walking a dizziness like a slight spinning or disorientation. It happens when I’m walking and is my biggest struggle. My blood pressure and heart rate are fine but the dizziness prevents me from walking around more.

[Pistol]

@Bailee have you consulted an ENT? dizziness should be evaluated - it may be an inner ear problem. There is also medication - Antivert helps a lot of people. Most people with ongoing dizziness see a specialist. 

[GasconAlex]

Dizziness is tricky. Partly because so many people refer to dizziness meaning different things which means that you'll need to explain exactly what you mean to an ENT doctor.

There are some drugs (personally I found they didn't work for me) but it really depends on the underlying cause of the dizziness. The vestibular system comprises the inner ear, eyes and proprioception and after time you can survive with only 2 of the 3 working. 

A great website is Dizziness and balance 

which covers a lot of the problems that you might have.

If your dizziness is ongoing (more than a couple of weeks that might be an ear infection) you need to get a specialist opinion because there are some serious issues that might be possible to fix or need serious medical intervention. My initial symptoms were headache and dizziness which actually indicated a tumor that had destroyed one ear and had eaten through to the brain. Cases like mine are incredibly rare but dizziness needs to be investigated whenever it ceases to be transient.

 

 

 

 

[outofadream]

Hi Bailee, I’m really sorry you’re going through that. When I was having really bad pots symptoms some years ago, I had a constant feeling of unsteadiness and like the room was slightly turning all the time, even when my stats were fine. It was definitely one of my most difficult symptoms and I found it hard to walk around as much too. I went to see both an ent and a couple neuros, but we never found a definitive cause for mine.  I do believe for me it was a pots symptom because when I experienced improvement of my other symptoms, that vague sense of vertigo got better too and finally went away. Every time I have a significant relapse it comes back as well. Very carefully increasing my activity did seem to help over time. The ent also recommended to go in for vestibular rehab, and I always wished I could have gone, because I wonder if that would have gotten me better faster. 
I really hope you can get to the bottom of yours since I know there can be a lot of causes. Sending empathy and support your way. 

 

[Pistol]

14 hours ago, outofadream said:

I had a constant feeling of unsteadiness and like the room was slightly turning all the time, even when my stats were fine. It was definitely one of my most difficult symptoms and I found it hard to walk around as much too

In the beginning of my POTS journey I used to feel moments of falling through a trap door. I would refer to them as "dizziness" out of a lack of better words, but found out it is not even considered dizziness but rather lightheadedness from decreased cerebral circulation. 

[outofadream]

@PistolI think I know what feeling you’re talking about, and that was always such a disorienting experience. I always did wonder if my unsteadiness had to do with blood flow shifts too. I hope you finally got relief from it! 

[Sea otter]

I don't have dizziness, but constant slightly "vision shakiness", like picture is going slightly left right, don't know how to explain. All day long, even with lying down. And I am pretty sure this is because of pots because when I did tilt test this symptom has increased. And all my ENT tests are ok. 

[GasconAlex]

What you are describing is a very mild nystagmus where the eye tracks horizontally. This can be severe with the whole room moving constantly, including when your eyes are closed. 

This is normally due to a defective link somewhere between the labyrinth and the eye where the eye tries to move according to information from the ear. If anything on the link screws up it can cause true rotational dizziness and nystagmus.

To test this you need the fun ENT tests including pouring warm and cold water onto your eardrum, the video nystagmus tests, the spinning chair test and the head shaking test. Has your ent done / prescribed those yet? They are normally fairly good at quantifying the problems even if they are not pleasant tests to undergo.

 

 

 

[Sea otter]

Thank you for explaining all this. I have done all tests twice, which you mentioned, except spinning chair test. Have been to multiple ENT specialists, and everything is ok. 

Also before pots I had some kind of awful ear inflammation, for which I think it was maybe trigger for pots, because after that symptoms started. I have problems with my left side of the body, I have shared that in post yesterday. 

[GasconAlex]

ENT specialists can be quite different in their expertise. I have a local (ish) ENT, a specialist ear only surgeon who I do most ear stuff with, a neuro oto surgeon who is an excellent surgeon but awful at talking to people and I personally dislike but he's one of only two in the country for what he does, then I have a neuro rhino surgeon who only deals with those issues. Occasionally I get to see others for extra tests.

They all are ENT specialists but all have different areas of expertise, except for the local one who only deals with my hearing (he took one look at my files and said it was far too difficult for him to interfere with). 

[Sea otter]

I understand. Especially the part that doctor doesn't want to interfere. That is so common, when you have dysautonomia. 

I am from Europe, one small country, and I went to the best ENT center in country. 

Also just few doctors here in whole country know about dysautonomia-pots. I've been searching for diagnosis for 3 years. But I know this is problem in whole world.