What are your vestibular symptoms?

[jeff_jefferson2]

Has anyone here experienced episodes of vertigo? I know people here get dizzy and lightheaded but what about a 24/7 dizziness? I've head a constant headache for about 22 months now. Every single second of the day I'm aware that my head hurts. Anyone else have this?

[StayAtHomeMom]

I have had bouts of constant dizziness. It was in the beginning of my issues and it lasted around a month. No matter what I did it wouldn't go away. 

I suspect my oldest son has POTS and his big symptom is headaches. He has headaches at least 4 days a week. When they are bad he lays down and they seem to ease to a manageable level. 

Do you have sinus issues? Have they ever investigated your headaches?

[WinterSown]

I have vertigo. It's one of my worst symptoms and it sets off Drop Attacks--I faint without losing consciousness; I can collapse but I stay awake. I don't often get the spins but I feel like the world is moving at a different speed than me, sidewalks elongate and warp, turning corners can seem like going around a banked turn, door knobs extend beyond my grasp. My balance is poor, I feel like I'm going to fall over backwards when I walk up the slightest slope like a wheelchair ramp at the end of every curb. Walking up stairs is worrisome, especially if I am carrying packages--my balance is off and I feel like I'm going to fall backwards. I've added to my pillbox aspirins or ibuprofen so I take it regularly, twice a day. By adding them in with my prescriptions pills for morning and evening I have considerably less headaches and pain. 

I have had positives on every dix-hallpike they've done, last year the audiologist did a whole series including a vemp test to look for imperfections in the tunnels of my ears. I've looked at images, flashing or still, circles, moving things, had clicks pounding into my ear. Ugh. The VEMP test was horrible--it's like sonar mapping of your inner ear, it doesn't hurt but dang, super willies!   I am on my third Vestibular PT script. The first sessions rearranged the crystals in my ear and began my balance and strength training. Each successive script has added more intense balance and core. I can hold myself up if I have an attack. My primary diagnosed the vertigo before I was diagnosed with dysautonomia. All the ear tests confirm that there is no physical deformity causing the vertigo and so it is attributed to dysautonomia. I have excellent hearing for 61 but my balance is not there. The primary prescribe 2mg diazapam (low-dose valium) for symptoms as needed, it does lower the sensations and tone down or remove the headaches. I bite the pills in half--for me one mg seems to do fine, a full pill and I need nappies. There is an OTC product called Bonine, often sold for sea-sickness, that may give you some temporary relief. 

Vertigo and imbalance are very treatable once you are tested and it is confirmed. A Dix-Hallpike test will rapidly confirm vertigo in the doctors office. It is non invasive and takes but a few minutes. For now, try to avoid areas that are going to give you a lot of sensory overload. Shop at slower hours or schedule at-home delivery to avoid stores which are meant to be flashy and get your attention. You need calm and quiet--stores and businesses don't do that until their very slowest hours. Feel better soon.

[Clb75]

I had vertigo when I first got sick with pots. I had it for 6 weeks continuously 24/7. The neurologist and ent went back and forth and could never give me a firm diagnosis of where it was coming from. It finally subsided once I started getting treatment for pots. I still have a lot of upright dizziness but not vertigo. I get migraines now too, I never had them before pots. I cut a lot of food out of my diet and fortunately don’t have to take any medicine for the migraines, but I’ve heard that they are common in Pots. 

Have you seen a neurologist? They may be able to further pinpoint where your headaches and dizziness are coming from.

[yogini]

Vertigo is spinning/dizziness related to an inner ear condition. I experienced POTS related dizziness as my main symptom virtually all the time until my POTS began to improve.  POTS related dizziness doesn’t usually involve spinning. Headaches are also a symptom of Dysautonomia.  All of my symptoms began to improve once I got on the right medicine.

what are your heart rate and blood pressure when you experience the symptoms?

[jeff_jefferson2]

On 11/13/2018 at 6:14 AM, StayAtHomeMom said:

I have had bouts of constant dizziness. It was in the beginning of my issues and it lasted around a month. No matter what I did it wouldn't go away. 

I suspect my oldest son has POTS and his big symptom is headaches. He has headaches at least 4 days a week. When they are bad he lays down and they seem to ease to a manageable level. 

Do you have sinus issues? Have they ever investigated your headaches?

Besides allergies, I don't really have known sinus issues. I've had an MRI of the brain, and a CT scan of the brain and sinuses done. All were normal

On 11/13/2018 at 11:00 AM, WinterSown said:

I have vertigo. It's one of my worst symptoms and it sets off Drop Attacks--I faint without losing consciousness; I can collapse but I stay awake. I don't often get the spins but I feel like the world is moving at a different speed than me, sidewalks elongate and warp, turning corners can seem like going around a banked turn, door knobs extend beyond my grasp. My balance is poor, I feel like I'm going to fall over backwards when I walk up the slightest slope like a wheelchair ramp at the end of every curb. Walking up stairs is worrisome, especially if I am carrying packages--my balance is off and I feel like I'm going to fall backwards. I've added to my pillbox aspirins or ibuprofen so I take it regularly, twice a day. By adding them in with my prescriptions pills for morning and evening I have considerably less headaches and pain. 

I have had positives on every dix-hallpike they've done, last year the audiologist did a whole series including a vemp test to look for imperfections in the tunnels of my ears. I've looked at images, flashing or still, circles, moving things, had clicks pounding into my ear. Ugh. The VEMP test was horrible--it's like sonar mapping of your inner ear, it doesn't hurt but dang, super willies!   I am on my third Vestibular PT script. The first sessions rearranged the crystals in my ear and began my balance and strength training. Each successive script has added more intense balance and core. I can hold myself up if I have an attack. My primary diagnosed the vertigo before I was diagnosed with dysautonomia. All the ear tests confirm that there is no physical deformity causing the vertigo and so it is attributed to dysautonomia. I have excellent hearing for 61 but my balance is not there. The primary prescribe 2mg diazapam (low-dose valium) for symptoms as needed, it does lower the sensations and tone down or remove the headaches. I bite the pills in half--for me one mg seems to do fine, a full pill and I need nappies. There is an OTC product called Bonine, often sold for sea-sickness, that may give you some temporary relief. 

Vertigo and imbalance are very treatable once you are tested and it is confirmed. A Dix-Hallpike test will rapidly confirm vertigo in the doctors office. It is non invasive and takes but a few minutes. For now, try to avoid areas that are going to give you a lot of sensory overload. Shop at slower hours or schedule at-home delivery to avoid stores which are meant to be flashy and get your attention. You need calm and quiet--stores and businesses don't do that until their very slowest hours. Feel better soon.

This sounds awful. How often do you go to PT? Is it still helping?

19 hours ago, Clb75 said:

I had vertigo when I first got sick with pots. I had it for 6 weeks continuously 24/7. The neurologist and ent went back and forth and could never give me a firm diagnosis of where it was coming from. It finally subsided once I started getting treatment for pots. I still have a lot of upright dizziness but not vertigo. I get migraines now too, I never had them before pots. I cut a lot of food out of my diet and fortunately don’t have to take any medicine for the migraines, but I’ve heard that they are common in Pots. 

Have you seen a neurologist? They may be able to further pinpoint where your headaches and dizziness are coming from.

How were you treated for POTS? Did you ever take anything for your migraines? I've seen 3 neurologists. The first 2 just wanted me on pills with no explanation of my headaches. The 3rd ordered an MRA but insurance never approved it. After i was diagnosed with dysautonomia, I never pursued it

19 hours ago, yogini said:

Vertigo is spinning/dizziness related to an inner ear condition. I experienced POTS related dizziness as my main symptom virtually all the time until my POTS began to improve.  POTS related dizziness doesn’t usually involve spinning. Headaches are also a symptom of Dysautonomia.  All of my symptoms began to improve once I got on the right medicine.

what are your heart rate and blood pressure when you experience the symptoms?

How did your POTS improve? I have a headache 24/7 so it's hard to say about my BP but it's always been normal. The only times I get symptoms of tachycardia is when I do minimal psychical exertion AND at random times I get episodes of tachycardia when I'm doing nothing. I've had several episodes of just standing and my heart rate was in the 140's. I was told I don't have the postural part of POTS.

[WinterSown]

I go to PT about twice a week, I've been going for almost two years. It helps tremendously with balance and strength. If I have a Drop Attack I have the strength to support myself now. I was at my cardiologist this morning and we talked about it. I faint, remain conscious, and am still on my feet--my face not bruised and my teeth still in my head. I did joke that I would prefer being knocked out for the recovery aspect because the whooze is awful, but I'm not injured. This is a huge, huge win. Fainting is awful but because of PT I can do it conscious and on my feet.

 

[dancer65]

Do you have muscle tension or pain in occipital area ? My nurologist wrote a letter to say to my Dr he thought the headaches/migraines were caused by fibromyalga . I have headaches most days and migraines lasting about 3 yo 4 days .

 

[DizzyGirls]

This topic interests me greatly, as this is my daughters' primary and most debilitating symptom.  Theirs is autonomically related.  It's also a form called visual vertigo and if not kept under control, it can develop into rotatory vertigo.  That has become increasingly difficult to do.  The Epley maneuver (or the like) does not work on them.  Makes them pass out.  There was a couple of exercises that my oldest daughter had with her PT that was part of vestibular rehab.  She could do them really well, but didn't improve the vertigo.  For my girls it's ANS controlled.  They take a variety of meds to help.  Most of the time that works well, but for my oldest, she's been just miserable lately.  Everything sets it off.

[jeff_jefferson2]

On 11/14/2018 at 1:28 PM, dancer65 said:

Do you have muscle tension or pain in occipital area ? My nurologist wrote a letter to say to my Dr he thought the headaches/migraines were caused by fibromyalga . I have headaches most days and migraines lasting about 3 yo 4 days .

 

Yes, and when I rub/massage that area I usually feel the pain go to the middle of my forehead (right where my headache is). I mentioned this to my doc and he just said it could be a pressure point. I went to PT for nearly 4 weeks to have my neck worked on but there were no lasting results.

On 11/15/2018 at 8:02 AM, DizzyGirls said:

This topic interests me greatly, as this is my daughters' primary and most debilitating symptom.  Theirs is autonomically related.  It's also a form called visual vertigo and if not kept under control, it can develop into rotatory vertigo.  That has become increasingly difficult to do.  The Epley maneuver (or the like) does not work on them.  Makes them pass out.  There was a couple of exercises that my oldest daughter had with her PT that was part of vestibular rehab.  She could do them really well, but didn't improve the vertigo.  For my girls it's ANS controlled.  They take a variety of meds to help.  Most of the time that works well, but for my oldest, she's been just miserable lately.  Everything sets it off.

There are lots of different maneuvers for vertigo. Do you know if they tried others?

[bellgirl]

I have Autonomic Vertigo. There is nothing wrong with any of the vestibular testing that was done. I had at least 4 tests. My doctor specifically did a thesis on Autonomic Vertigo, and no matter what medication I am on, I still have it. I'm not as nauseated, dizzy, misjudging curbs, as I did when I was first diagnosed, but I do take zofran on long trips, and that does help. It hits when I least expect it, and yes, it's like fainting without passing out, to relate to what you are talking about. I broke my foot last year, falling backwards off a retaining wall. I did a 180 degree in the air, and thankfully didn't land on my head on the cement, but the brunt of my fall was on my left foot!! I couldn't right myself and would have fallen about 3-4 feet on my head. Sometimes I think I can do all the things I used to do, but I really can't.

[MeganMN]

Super interested I this topic. I was having weird episodes of dizziness and feeling off balance before I passed out and ultimately was diagnosed with POTS. Since starting treatment, my dizziness has become exponentially worse. After feeling rough all day, finally decided to try Meclizine and I feel a million times better! Wondering about the connections.