POTS and motion sickness (+ other symptoms) - does it improve?

[Magosh]

Hi all,

I'm having a tilt-table test this week to test for POTS. In any case, my symptoms are very similar to POTS (I've been experiencing these for about 5 years): dizziness, lightheadedness-induced headaches, headrushes when standing up, brain fog, and new onset of motion sickness. For me,  what tends to happen is when I stand, heart rate increases a lot, as far as I know BP doesn't really change. 

What I wanted to know mainly is, with treatment, to what extent are these different symptoms tackled? Do they tend to get better together, or are some more likely to be solved whilst others stay the same? Reason why I ask is that one of the biggest things for me is the motion sickness. Whilst I'd love the other things to get better, none of them really stop me from living my life. But the motion sickness now means that I avoid long car journeys (though non-high speed trains are usually okay if they're <2 hours), I'll avoid holidays because of the need to travel. Which being young is not a great place to be really - feels like I'm wasting a lot of potential opportunities but the travel anxiety has become quite overpowering. Beyond this, I used to love playing video games and I find I'm unable to play many for very long, or I get sickly headaches. 

Just wondering if anyone has had this particular symptom improve at all - and if so, by what form of treatment (I understand we all react differently but it would still be interesting to know). Would also be interested in knowing just generally what sort of things people have found helpful in addressing any other of these symptoms.

Thanks
Magosh

[WinterSown]

I was diagnosed with vertigo and have completed Vestibular PT which helped so very much. I also take 2mg valium which reduces a lot of the vertigo symptoms. Your primary can do a Dix Hallpike maneuver in the office to determine if you do have vertigo. I hate HATE this test but it has been immediately conclusive with me each time it's done:

https://www.youtube.com/results?search_query=dix+hallpike+maneuver

The PT doctor did more than rearrange the rocks in my head, lol, he had to reposition the crystals and it took several sessions of manipulation. He also trained me for balance, strength and endurance. I don't trip like I used to, the world no longer tilts, and I'm strong enough to use my body strength to keep me erect if I feel like I'm going to fall. It's been a big difference for me and I cannot say enough good things about Vestibular PT.

In the meantime, if you can take an extra pill, I have found Bonine to be a good OTC drug for motion sickness--it gets rid of a lot of brain fog as well.

I hope you feel better soon. 

T

[DizzyGirls]

Hi Magosh! Welcome to the forum!  Well, as you can see by my username, vertigo was/is still one of my girls' most debilitating symptoms.  They both developed it by the time they were 12 and 14 (they are almost 19 and 21 now).  My oldest's vertigo was triggered by a migraine (vertigo is her aura).  The headache left, the vertigo stayed.  My youngest, due to a viral cold.  The cold left, the vertigo stayed.  I think both of theirs is triggered by a combination of autonomic issues and vestibular.  Their PCP tried to do the Epley maneuver (similar to Dix-Halpike) on my oldest and she almost passed out.  He was shocked that it didn't work, as he said that he had never had it not work.  Well, first time for everything I suppose.  My youngest we never tried this with.  One of their respected doctors that we see quite often also did not recommend the vestibular rehab for them due to their hypermobility of their necks.  Thought it might be too taxing on it.  They have Ehlers Danlos Syndrome.  My oldest has severe cervical instability and is having multiple spinal fusions later this month.  Their neurosurgeon suspects she has something called Cervical Medullary Syndrome.  One of the biggest symptoms of that is vertigo.  They've always had motion sickness, as do I and their grandmother also.  We all get migraines too.  One daughter takes diazepam and the other takes lorazepam in addition to their meclizine (OTC motion sickness med).  Btw, they also cannot watch tv at all as the motion of the picture increases their vertigo.  They used to like to do the X-Box Connect games, but, due to the movement of the pictures, they cannot do that either.  They can use a cell phone, as the screen is so much smaller, but if someone posts something on Instagram or SnapChat that moves, they turn the phone away so they can't see it.  There are lots of triggers for them... crowded places, with a lot of people, noise, movement.  Loud music (the bass, especially), the volume.  Also, heavy machinery or fans (like the one in our front bathroom!) that make a deep sound that you can feel the sound waves.  Things like that trigger their vertigo, too.  Anyway, I've gone on too long, but you get the picture.  We are still working on it, but I'll post after my daughter's fusion surgery and let everybody know what symptoms she's actually left with.  It's anyone's guess as to what the surgery will fix.

Hang in there and take a meclizine!

[TCP]

I have lived with travel sickness for many years and it has waxed and waned over time. I do find that if you keep your eyes on the horizon as much as possible (sit in the front seat of a car) it is better. Do look down or try to read. Have a bottle of peppermint oil to sniff. Eat before you travel settles the tum.