This was so helpful. I’m still on the journey to getting properly diagnosed. My primary care doctor and ENT said “it’s probably Menieres” but I don’t have any hearing loss and have only had one episode of room-spinning vertigo. Instead, it’s been tinnitus, ear fullness, dizziness, derealization, sound/light sensitivity, optical migraines and now thanks to you I have a good description - “elevator drops”!
Amy, thank you. Menieres and Vestibular Migraine symptoms are so similar. We are also part of a Menieres Support Group that meets on Wednesdays. I have learned so much from that group even though I don't have Menieres. Here is the link to the Facebook group. facebook.com/groups/1009975689623729
Thanks for watching Amy!! Your symptoms are all too familiar! Keep the journey going, keep searching for answers, you know your body best! Remember that you are strong. 💜
I noticed that you included “PPPD” (Persistent Postural Perceptual Dizziness) in the title of your video, but you didn’t talk about it in the video. Just wondering if either of you have PPPD as well along with your Vestibular Migraines (VM)? I know that I for sure have PPPD as a diagnosis. But I also am pretty certain I have VM’s as well - but just haven’t had a chance yet to see a neurologist who specializes in vestibular conditions. (I’ve had all other physiological/non-neurological things evaluated and ruled out at this point already with lots of testing that’s been done over many years). But just curious if either of you have PPPD, and if so, would love to hear more about your journey/journeys with that along with your VM. Also, “Seeking Balance” is an amazing resource for people who struggle with vestibular conditions (like PPPD and VM) and also for those who struggle with Tinnitus - just in case neither of you have heard of her before, she is a great resource with her FREE help guides and/or her paid programs/services as well. I have found her “Rock Steady” program incredibly helpful on my long vestibular symptom journey I have been on for years.
Thank you for watching and sharing your resources with us. Yes, we both have PPPD. That is a great idea for a video. We will try to schedule a physician to do a special for just PPPD.
Thank you for watching! I also have PPPD. We will definitely do an episode on how that is. I do have some resources from the “Rock Steady” program, a wonderful resource.
Thank youuuuu so much for this video. Im suffering from this since I had the preeclampsia in may 23. Its horrible. Especially the brain Scrambler 😭😭😭😭 oh Lord what can I do against it. Please help
We are sorry to hear you are going through this. VEDA (www.vestibular.org) has helpful information. Finding the right doctor is one of the biggest hurdles. Ask your care providers how familiar they are with vestibular disorders.
Yes, I have that feeling of walking on a boat. Sometimes I feel like my heels are sinking in the ground. The feeling did get better with Vestibular Therapy. I do notice when it is rainy I get more of the boat rocking feeling, too. Here is a link from VeDA about Vestibular Rehab Therapy. vestibular.org/article/diagnosis-treatment/treatments/vestibular-rehabilitation-therapy-vrt/ There are also some other articles on VeDA about balance. Hoping your rocking feeling improves.
Yes, I have that feeling sometimes, but it has decreased due to VRT and meds. It is a very unsettling feeling. Thank you Joy for posting VeDA’s link. It does improve. Wishing you health and balance on your journey 🦩
@@Megan_Jennifer that’s really a good news. It’s been 6 months I have it all the time. It’s like the ground is shifting under my feet. Like walking at walkways at the airport one trampoline. May I ask how long did you have this symptom and what helped you to away ?
@@eshghedelameshghedelam1727 I had that specific symptom for at least a year on and off. It would always change. I still feel like I’m rocking sometimes when I lay still but it’s much less than before. What helped me get rid of it was VRT plus nervous system regulation techniques such as somatic tracking and parasympathetic breathing. I also made sure to go on a walk daily.
We have some of the people in our support group mention they have had some vestibular sensations at night while sleeping. If you have that happen during sleep it might be worth mentioning to your treating physician if you haven't already. Thanks for watching.
Yes, going through these vestibular symptoms it is very scary at times. Anytime I have a flare up I start the deep breathing and try to relax my mind. (Sometimes easy said than to do.) Here is a link to the VeDA article about dealing with symptoms. vestibular.org/article/diagnosis-treatment/new-patient-toolkit/step4/
Yes, it is very scary. These symptoms can be extremely unsettling. I try and sit down and make sure I am hydrated and do some deep breathing. I put my Sea-Bands on and take a rescue med if it is a bad flare. Hang in there, things did improve once I got the right treatment plan.
This was so helpful. I’m still on the journey to getting properly diagnosed. My primary care doctor and ENT said “it’s probably Menieres” but I don’t have any hearing loss and have only had one episode of room-spinning vertigo. Instead, it’s been tinnitus, ear fullness, dizziness, derealization, sound/light sensitivity, optical migraines and now thanks to you I have a good description - “elevator drops”!
Amy, thank you. Menieres and Vestibular Migraine symptoms are so similar. We are also part of a Menieres Support Group that meets on Wednesdays. I have learned so much from that group even though I don't have Menieres. Here is the link to the Facebook group. facebook.com/groups/1009975689623729
Thanks for watching Amy!! Your symptoms are all too familiar! Keep the journey going, keep searching for answers, you know your body best! Remember that you are strong. 💜
I appreciate you sharing this. It has been helpful! 👍🏻❤️
You are so welcome! Thank you for watching. We love being a part of this special vestibular community.
Thank you for watching! We appreciate your support in our mission to raise awareness about vestibular disorders! Glad you found it helpful 💜
I noticed that you included “PPPD” (Persistent Postural Perceptual Dizziness) in the title of your video, but you didn’t talk about it in the video. Just wondering if either of you have PPPD as well along with your Vestibular Migraines (VM)?
I know that I for sure have PPPD as a diagnosis. But I also am pretty certain I have VM’s as well - but just haven’t had a chance yet to see a neurologist who specializes in vestibular conditions. (I’ve had all other physiological/non-neurological things evaluated and ruled out at this point already with lots of testing that’s been done over many years).
But just curious if either of you have PPPD, and if so, would love to hear more about your journey/journeys with that along with your VM.
Also, “Seeking Balance” is an amazing resource for people who struggle with vestibular conditions (like PPPD and VM) and also for those who struggle with Tinnitus - just in case neither of you have heard of her before, she is a great resource with her FREE help guides and/or her paid programs/services as well. I have found her “Rock Steady” program incredibly helpful on my long vestibular symptom journey I have been on for years.
Thank you for watching and sharing your resources with us. Yes, we both have PPPD. That is a great idea for a video. We will try to schedule a physician to do a special for just PPPD.
Thank you for watching! I also have PPPD. We will definitely do an episode on how that is. I do have some resources from the “Rock Steady” program, a wonderful resource.
Thank youuuuu so much for this video. Im suffering from this since I had the preeclampsia in may 23. Its horrible. Especially the brain Scrambler 😭😭😭😭 oh Lord what can I do against it. Please help
We are sorry to hear you are going through this. VEDA (www.vestibular.org) has helpful information. Finding the right doctor is one of the biggest hurdles. Ask your care providers how familiar they are with vestibular disorders.
Have a look at The Steady Coach
The Steady Coach is wonderful!!!
Hi. I have the feeling of walking on the boat and floor moving when walking , do you feel the same ? Hasn’t got better ?
Yes, I have that feeling of walking on a boat. Sometimes I feel like my heels are sinking in the ground. The feeling did get better with Vestibular Therapy. I do notice when it is rainy I get more of the boat rocking feeling, too. Here is a link from VeDA about Vestibular Rehab Therapy. vestibular.org/article/diagnosis-treatment/treatments/vestibular-rehabilitation-therapy-vrt/ There are also some other articles on VeDA about balance. Hoping your rocking feeling improves.
Yes, I have that feeling sometimes, but it has decreased due to VRT and meds. It is a very unsettling feeling. Thank you Joy for posting VeDA’s link. It does improve. Wishing you health and balance on your journey 🦩
I used to have that all the time and it’s no longer with me 😊
@@Megan_Jennifer that’s really a good news. It’s been 6 months I have it all the time. It’s like the ground is shifting under my feet. Like walking at walkways at the airport one trampoline.
May I ask how long did you have this symptom and what helped you to away ?
@@eshghedelameshghedelam1727 I had that specific symptom for at least a year on and off. It would always change. I still feel like I’m rocking sometimes when I lay still but it’s much less than before.
What helped me get rid of it was VRT plus nervous system regulation techniques such as somatic tracking and parasympathetic breathing.
I also made sure to go on a walk daily.
Can the "elevator drop" or falling sensation happen during sleep?
We have some of the people in our support group mention they have had some vestibular sensations at night while sleeping. If you have that happen during sleep it might be worth mentioning to your treating physician if you haven't already. Thanks for watching.
@@vestibularjoy Thank you. Taurine helps a lot in case others are interested.
I find it really scary
Yes, going through these vestibular symptoms it is very scary at times. Anytime I have a flare up I start the deep breathing and try to relax my mind. (Sometimes easy said than to do.) Here is a link to the VeDA article about dealing with symptoms. vestibular.org/article/diagnosis-treatment/new-patient-toolkit/step4/
Yes, it is very scary. These symptoms can be extremely unsettling. I try and sit down and make sure I am hydrated and do some deep breathing. I put my Sea-Bands on and take a rescue med if it is a bad flare. Hang in there, things did improve once I got the right treatment plan.