Went to Amazon and typed Sue Hickey in the books drop down menu area and bought her book (one for me and one for my physical therapist) after watching 37 minutes of this. How have doctors missed this for so many decades? Luckily, I found you Sue! Thank you Vestibular Disorders Association for making this free to find on TH-cam. Angels, true angels.
Thank you for speaking out and bringing awareness. I work in healthcare and am myself a vestibular patient. I educate everyone around me. I believe if we all do our part, we can make a difference.
@Bjorn Lothbrok that’s the norm. If anything, VRT will make you feel worse before it makes you feel better. You also have to make sure your anxiety is under control. An anxious brain will not heal quickly or easily. So, see someone about your anxiety if you have to, and keep going. Add in some habituation exercises and daily walks if you are able to. Do not stop. Every single day you have to keep at it. It doesn’t matter if it’s a good day or a bad day. VRT is a necessary commitment. Good luck
Words cannot describe how much watching this video meant to me. As someone who has had a vestibular disorder for 8 years, I can relate all too well to everything that Sue discusses here. It is often difficult to describe the symptoms, quality of life issues, and diagnosis/treatment of this disease to others, and she has done an outstanding job of covering all of these areas. Can't wait to share this with my family members, who are very supportive but struggle to understand. I'll also be researching the Zone Diet and one of the meds she mentioned.
Thank you I have had almost total vestibular loss. I have had for two years now and has been disabling. I had two jobs and very active with my Grandkids. I am now disabled and walk with a cane and can no longer drive. I was able to go to a great medical university and diagnosed with my loss. It is so hard to explain all the symptoms that go with this and to explain to other people what it like and watching this makes me understand so many things. Every day things are so difficult.... grocery shopping, walking outside especially in the winter with snow, riding in a car long distances, sewing, being in large group of people. Hearing how when your balance is bad and how you can get fatigued and can’t think sometimes and I’m not crazy with all the different things associated that you didn’t realize are related.
I really appreciate this video. I am a Licensed Practical Nurse of 26 years, and yes, I have a Vestibular Disorder, bilaterally. I was diagnosed in 2017. On a regular day I’m very aware of my posture, I’m leaning to the right side. I do have anxiety when driving. Oh yeah, I was also diagnosed with stationary vertigo. After having COVID-19, my symptoms exacerbated; it’s like my symptoms became worse. It’s a daily battle for me. I still work as a nurse. I have to explain myself often.
Your video really help me out understanding the changes in my life I need to make to feel better again....I have quit working do to my multiple attacks..Now my husband and I moved off-grid to a small town leaving city life was the best thing I could have done less triggers less anxiety which became a huge issue.. thank you for sharing..
As with almost any chronic and difficult to diagnose illness, lack of financial resources/good insurance is the biggest barrier to diagnosis and treatment. I have been in the same boat most of my life.
I was diagnosed with vestibular neuritis about a year after my first episode. When. It first happened in aug 2011 I actually went to the hospital in an ambulance because I thought I was having a stroke. I've had CT and MRI scan. I've been through a barrage of tests at the hospital summer of 2012. They hooked me up with electrodes, put warm and cold water in my ears and I had to look a things on a screen. I have good days and bad days. I had a great summer where my dizziness wasn't too bad, but my symptoms would return if I get a cold. I went to a mall this weekend and I just couldn't take it.. the crowds and noise made me feel like I was going to pass out. I felt light headed and my legs felt like jelly. My ENT said that there's not much that I can do. Medication doesn't really work for me. Physiotherapy helps a little. My ENT and doctor told me that I just need to take it easy when symptoms are heightened. What I'd like to know is does it get better? I've never had a day that I was 100% better. I may have had days where it was maybe 80% better on my best day. Watching your video makes me feel that I do have a valid diagnosis. My ENT said that I have loss of balance in my right ear.
It's possible that you were misdiagnosed, sorry to say. Meds that are usually prescribed for seizure patients might help. See another doctor.. that's what I would do. Again, please note: I am not a doctor.
Emma Jane I don’t usually give out my email. I can answer any questions on this thread. I am feeling much better since I stopped working. I occasionally get dizziness but I learned to manage it because I sometimes know what triggers it. It hasn’t been easy since covid: I can’t get my usual massage. But my husband helps me with at home laser massage
helen0725 how did the vestibular thing start for you? And what were the symptoms when you had an attack? I’ve been dealing with constant brain fog for 5 months. Do you deal with that? The derealization gets to be too much sometimes. It gets worse when an attack comes. Yesterday I experienced something weird which was a first, I felt like I couldn’t speak. Like I wanted to spit out a sentence but something was stopping me. I imagined at that time that’s what a stroke feels like. It was so weird but it was part of the attack.
Thank you Sue, watching your video has been very informative and validating. I've been dealing with vestibular issues for over a year now. I'd like to add about the dentist - Lidocaine is usually mixed with an ingredient that's a stimulant.Since stimulants can trigger a flare up, ask your dentist to use an alternate anesthetic (they use one for heart patients). My head was ok in about 20 minutes after the procedure. Also to note, my eye doctor switched my contact lenses from multifocal to single focus. A great catch on his part. He said my brain has enough to do without also trying to figure out which prescription to use within the lens.
Going for a second treatment tonight with a therapist. Had really bad vertigo since March 3rd. First treatment I felt a little better but it really never went away, every time I turned in the house I was way off balance. Hoping this 2nd treatment helps more.
To: grimley: It's interesting that you mention neck pain. I have noticed that my dizziness is worse when I have really bad neck pain. I have gone to several physiotherapists and I am currently seeing a physiotherapist that is helping me a lot. He uses laser therapy, IFC and stretching exercises. I am managing my symptoms fairly well. I now know what triggers my neck pain and I try to avoid those activities that cause bad neck pain. Such as carrying heavy things or going for a really long car ride. We went away a few weeks ago and I was in the car for almost 3 hours and afterwards I suffered tremendous neck pain. I find that applying ice on my neck also helps a lot, especially when my neck feels really inflamed. I mostly had Vestibular Neuritis after I had a bad cold or ear infection.
Sounds exactly like my life. I have have vertigo as well as other symptoms for a year. Doctors can't find anything wrong. It is very frustrating. I lived in a toxic mold environment and my symptoms started with a sinus problem. Now my ears hurt and have pressure and I can't hear as well. I am no longer in the toxic mold but I still have symptoms and everything has gotten worse. I am glad to know there are other people who have this condition and I am not going crazy.
PatriciaCal. For the longest time I have lots of clear drainage for my left nasal, but not my right. The same with my ears. No drainage for my right. Why? I also have constant dizziness, sinning, buzzing in ears, balance off, have falling totally backwards at least 3 times. All very scary still trying to get Dx. Felling lost. Great talk!!
I just had to leave my job. I was the golden child until the vertigo took me down, and I kept missing work. I couldn't even look at my screens, or scroll, and my mind became foggy and i began to make mistakes...I'm always sick, always miserable. I'm a burden on my husband. I'm so sad. : (
Dont give up. There are answers but you have to accept you have Vestibular and move on. Sue Hickley is truely amazing to encourage you to get your life back. David Bulchholz. M.D has written a book which will help you with how to take your life forward from here.......Even though you don't feel positive, you have no choice but to find a way to push through this neuro devil!
This is like my life to a t. I haven't watched all the way to the end yet but you mentioned not working for so many years and 12 years of therapy 2 years ago I went through therapy and thought my issue was about 90% corrected but nowitjust come back again at times it can be debilitating I've resorted to trying to get on disability but that seems to be very difficult. Especially in that most people don't seem to treat it as a real disability or illness
@@pigjones2724 I'm 49. I still haven't got disability but now I have many more symptoms. Had MRI in oct and have brain lesions and now my right side is not working right. Next week my neuro got me in with an MS specialist😩
As soon as you mentioned the dentist, I said "aha!!" to myself. I went to the dentist for a routine cleaning last week. Perhaps that triggered my dizzy symptoms? I also feel so uncomfortable being in the dentist's chair. I feel like I'm a bat that's upside down!!
I've had to go to the dentist/in fact still going, as I'm getting dentures, and each time my B/P has gone sky high, as it exacberates all my Vertigo symptoms......just thinking of going my stress level goes up......I'm going to give this link to my new Dr. so she will understand more about what I'm going through.......this video was awesome......I'm not on the same meds., but the ones I'm on "calm things down"......
Ricky, I'm sorry we are not able to pass on Sue's contact information. You can connect with others with the same symptoms on our online support groups and confidential forum. If you are interested our website is www.vestibular.org or contact us at info@vestibular.org
As an aside, while I was watching your video I couldn't help but focus on the squiggly lines drawn on the white board behind you. I forgot to ask, if you ever get neck pain. I find that if I have neck pain, my dizziness is worse.
Sorry to hear about your dizziness challenges. I can relate to a lot of what you've said here. Have you been to see a physical therapist trained in vestibular rehabilitation? There is a condition called cervicogenic (sp?) dizziness. It sounds like that could be a part of your problem. A PT might be able to help... with those neck issues. Note: I am not a doctor. Check out VEDA's website for more information about this vestibular disorder and others. Chronic subjective dizziness is another. I wish you all the best. - Randy
Marijuana? I have VM and most of the symptoms Sue is describing. I tried marijuana and it only added paranoia and hunger to my long list of symptoms. Not effective for me.
I agree with reception being broken. I came in with the room spinning and the receptionist started asking my name and address, so I pulled out my license and handed it to her, and you would have thought that I slapped her.
Patient need to understand the registration clerk you talk to is just as important as the doctor and nurse. I work in the medical field and I also have Ménière’s Disease. Your medical care being at that front desk and I have seen many patient be rude, nasty and just down right ugly to registration for no reason at all. Some of you walk through the door within the wrong attitude. And you wonder why it took so long for you to be diagnosed. It may be you. No one like taking care of a nasty patient.
For 6 months now I’ve been suffering with dizziness/off balance/swaying and even perception issues. I had a VNG test done and I apparently have a 57% deficit in my left inner ear. I hit me randomly one day after I left the gym. I am 28 years old and the last 6 months have been a struggle to say the least will things ever get better? I do vestibular exercises 30-45 min a day everyday
Sorry to hear that. Hyperacusis (sounds are too loud) is very scary. Here's an article that may be useful: vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/vestibular-hyperacusis/
As first a vestibular patient and than a medical worker I do not know why VEDA has this lady speaking to room of nurses. I do not find her attitude to be in the right place for helping patients with vestibular disorders or health care providers. She has a very negative tone that is clearly helping no one. I feel as if she is venting about her problems and issues instead of helping to care for or bring awareness to the people who’s she supposed to be supporting.
Nurses are often the first point of contact for vestibular patients in the healthcare system, and can influence how a patient is triaged. Increasing awareness and compassion within all parts of the healthcare system is essential, since it takes a multi-disciplinary team to effectively manage patient care.
Went to Amazon and typed Sue Hickey in the books drop down menu area and bought her book (one for me and one for my physical therapist) after watching 37 minutes of this. How have doctors missed this for so many decades? Luckily, I found you Sue! Thank you Vestibular Disorders Association for making this free to find on TH-cam. Angels, true angels.
Thank you for speaking out and bringing awareness. I work in healthcare and am myself a vestibular patient. I educate everyone around me. I believe if we all do our part, we can make a difference.
@Bjorn Lothbrok recovered for 3 years
@Bjorn Lothbrok that’s the norm. If anything, VRT will make you feel worse before it makes you feel better. You also have to make sure your anxiety is under control. An anxious brain will not heal quickly or easily. So, see someone about your anxiety if you have to, and keep going. Add in some habituation exercises and daily walks if you are able to. Do not stop. Every single day you have to keep at it. It doesn’t matter if it’s a good day or a bad day. VRT is a necessary commitment. Good luck
Words cannot describe how much watching this video meant to me. As someone who has had a vestibular disorder for 8 years, I can relate all too well to everything that Sue discusses here. It is often difficult to describe the symptoms, quality of life issues, and diagnosis/treatment of this disease to others, and she has done an outstanding job of covering all of these areas. Can't wait to share this with my family members, who are very supportive but struggle to understand. I'll also be researching the Zone Diet and one of the meds she mentioned.
Thank you I have had almost total vestibular loss. I have had for two years now and has been disabling. I had two jobs and very active with my Grandkids. I am now disabled and walk with a cane and can no longer drive. I was able to go to a great medical university and diagnosed with my loss. It is so hard to explain all the symptoms that go with this and to explain to other people what it like and watching this makes me understand so many things. Every day things are so difficult.... grocery shopping, walking outside especially in the winter with snow, riding in a car long distances, sewing, being in large group of people. Hearing how when your balance is bad and how you can get fatigued and can’t think sometimes and I’m not crazy with all the different things associated that you didn’t realize are related.
Im with you Debbie
Thank you! I'm going through this right now and it is truly hell on earth.
thank you for sharing, hope Sue Hickey is better now in 2022,
I really appreciate this video. I am a Licensed Practical Nurse of 26 years, and yes, I have a Vestibular Disorder, bilaterally. I was diagnosed in 2017. On a regular day I’m very aware of my posture, I’m leaning to the right side. I do have anxiety when driving. Oh yeah, I was also diagnosed with stationary vertigo. After having COVID-19, my symptoms exacerbated; it’s like my symptoms became worse. It’s a daily battle for me. I still work as a nurse. I have to explain myself often.
Wow, Sue! You pegged me. Thank you for sharing this information. You confirm so much confusion for me.
Your video really help me out understanding the changes in my life I need to make to feel better again....I have quit working do to my multiple attacks..Now my husband and I moved off-grid to a small town leaving city life was the best thing I could have done less triggers less anxiety which became a huge issue.. thank you for sharing..
Fantastic Drs you have
If only I had the money
Every day is a dreadful struggle
As with almost any chronic and difficult to diagnose illness, lack of financial resources/good insurance is the biggest barrier to diagnosis and treatment. I have been in the same boat most of my life.
you are not alone dear one
I was diagnosed with vestibular neuritis about a year after my first episode. When. It first happened in aug 2011 I actually went to the hospital in an ambulance because I thought I was having a stroke. I've had CT and MRI scan. I've been through a barrage of tests at the hospital summer of 2012. They hooked me up with electrodes, put warm and cold water in my ears and I had to look a things on a screen. I have good days and bad days. I had a great summer where my dizziness wasn't too bad, but my symptoms would return if I get a cold. I went to a mall this weekend and I just couldn't take it.. the crowds and noise made me feel like I was going to pass out. I felt light headed and my legs felt like jelly. My ENT said that there's not much that I can do. Medication doesn't really work for me. Physiotherapy helps a little. My ENT and doctor told me that I just need to take it easy when symptoms are heightened. What I'd like to know is does it get better? I've never had a day that I was 100% better. I may have had days where it was maybe 80% better on my best day. Watching your video makes me feel that I do have a valid diagnosis. My ENT said that I have loss of balance in my right ear.
It's possible that you were misdiagnosed, sorry to say. Meds that are usually prescribed for seizure patients might help. See another doctor.. that's what I would do. Again, please note: I am not a doctor.
omg i thought i was the only one whos symptoms appear again after a cold
Do you have an email I can reach you at?
Emma Jane I don’t usually give out my email. I can answer any questions on this thread.
I am feeling much better since I stopped working. I occasionally get dizziness but I learned to manage it because I sometimes know what triggers it. It hasn’t been easy since covid: I can’t get my usual massage. But my husband helps me with at home laser massage
helen0725 how did the vestibular thing start for you? And what were the symptoms when you had an attack? I’ve been dealing with constant brain fog for 5 months. Do you deal with that? The derealization gets to be too much sometimes. It gets worse when an attack comes. Yesterday I experienced something weird which was a first, I felt like I couldn’t speak. Like I wanted to spit out a sentence but something was stopping me. I imagined at that time that’s what a stroke feels like. It was so weird but it was part of the attack.
I'm reading her book right now. I have no diagnosis and still dealing with this for a year.
she has a book? wow
What’s the book called?
You have to advocate for yourself it’s the only way man!!!!
@@Jesussaves532 It's called Finding Balance.
@@rblightchild It's called Finding Balance.
Thank you Sue, watching your video has been very informative and validating. I've been dealing with vestibular issues for over a year now. I'd like to add about the dentist - Lidocaine is usually mixed with an ingredient that's a stimulant.Since stimulants can trigger a flare up, ask your dentist to use an alternate anesthetic (they use one for heart patients). My head was ok in about 20 minutes after the procedure. Also to note, my eye doctor switched my contact lenses from multifocal to single focus. A great catch on his part. He said my brain has enough to do without also trying to figure out which prescription to use within the lens.
Going for a second treatment tonight with a therapist. Had really bad vertigo since March 3rd. First treatment I felt a little better but it really never went away, every time I turned in the house I was way off balance. Hoping this 2nd treatment helps more.
@Andree Vestibular Disorders Association thank you. I'm really praying it starts to help and gets me because to normal.
To: grimley: It's interesting that you mention neck pain. I have noticed that my dizziness is worse when I have really bad neck pain. I have gone to several physiotherapists and I am currently seeing a physiotherapist that is helping me a lot. He uses laser therapy, IFC and stretching exercises.
I am managing my symptoms fairly well. I now know what triggers my neck pain and I try to avoid those activities that cause bad neck pain. Such as carrying heavy things or going for a really long car ride. We went away a few weeks ago and I was in the car for almost 3 hours and afterwards I suffered tremendous neck pain. I find that applying ice on my neck also helps a lot, especially when my neck feels really inflamed.
I mostly had Vestibular Neuritis after I had a bad cold or ear infection.
thanks for tips, :) hope your good streak stays, keep it up and keep feeling well
Staggering along like a drunk! 🤣 Am trying all the manoeuvres I can find on TH-cam. Is working to stop the stagger! 🙏🏻
There seems to be very little help for this in uk I have seen so many Doctors with negative results I’ve now given up completely!!!
Hi Michael, Try Dr. Peter Rea at the London Clinic.
Sounds exactly like my life. I have have vertigo as well as other symptoms for a year. Doctors can't find anything wrong. It is very frustrating. I lived in a toxic mold environment and my symptoms started with a sinus problem. Now my ears hurt and have pressure and I can't hear as well. I am no longer in the toxic mold but I still have symptoms and everything has gotten worse. I am glad to know there are other people who have this condition and I am not going crazy.
mold can cause bilateral hypofunction
Vanessa i am too a patient of vertigo since 3.4 years. I can feel your pain.
I have Ototoxicity.......have them check for that...........
@ Daniel … did anyone come up with a mold detector yet
Can so relate. I have had MdDS for 16 months and it’s horrible. Nothing helps, even treatment at Mt. Sinai in New York.
Carolyn Chamness , are you feeling better?
PatriciaCal. For the longest time I have lots of clear drainage for my left nasal, but not my right. The same with my ears. No drainage for my right. Why?
I also have constant dizziness, sinning, buzzing in ears, balance off, have falling totally backwards at least 3 times. All very scary still trying to get Dx. Felling lost. Great talk!!
Hi Patricia, Contact us by writing info@vestibular.org for information, resources and healthcare referrals.
Ugh. this made me sob. 17 years? I've had it for 2, gone through two jobs, and this seems so hopeless and endless!
I just had to leave my job. I was the golden child until the vertigo took me down, and I kept missing work. I couldn't even look at my screens, or scroll, and my mind became foggy and i began to make mistakes...I'm always sick, always miserable. I'm a burden on my husband. I'm so sad. : (
Dont give up. There are answers but you have to accept you have Vestibular and move on. Sue Hickley is truely amazing to encourage you to get your life back. David Bulchholz. M.D has written a book which will help you with how to take your life forward from here.......Even though you don't feel positive, you have no choice but to find a way to push through this neuro devil!
This is like my life to a t. I haven't watched all the way to the end yet but you mentioned not working for so many years and 12 years of therapy 2 years ago I went through therapy and thought my issue was about 90% corrected but nowitjust come back again at times it can be debilitating I've resorted to trying to get on disability but that seems to be very difficult. Especially in that most people don't seem to treat it as a real disability or illness
How old r u, I’m 60 an hope I can get disibility Have you got disibility yet
@@pigjones2724 I'm 49. I still haven't got disability but now I have many more symptoms. Had MRI in oct and have brain lesions and now my right side is not working right. Next week my neuro got me in with an MS specialist😩
Do you have 3PD also. Your symptoms so familiar to me. Thank you for your support
What is the name of your book.
The name of Sue’s Book is called: Finding Balance: Healing From a Decade of Vestibular Disorders, Sue Hickey, 2011
Have anyone with vestibuler issues ever had an abnormal eeg?
As soon as you mentioned the dentist, I said "aha!!" to myself. I went to the dentist for a routine cleaning last week. Perhaps that triggered my dizzy symptoms? I also feel so uncomfortable being in the dentist's chair. I feel like I'm a bat that's upside down!!
This doesn't sound like vestibular neuritis. Please see my posts above. And note that I am not a doctor. I hope you're doing better by now.
I've had to go to the dentist/in fact still going, as I'm getting dentures, and each time my B/P has gone sky high, as it exacberates all my Vertigo symptoms......just thinking of going my stress level goes up......I'm going to give this link to my new Dr. so she will understand more about what I'm going through.......this video was awesome......I'm not on the same meds., but the ones I'm on "calm things down"......
I have similar vestibular issues and have read sue’s book
Is it possible to contact Sue?
Ricky, I'm sorry we are not able to pass on Sue's contact information. You can connect with others with the same symptoms on our online support groups and confidential forum. If you are interested our website is www.vestibular.org or contact us at info@vestibular.org
As an aside, while I was watching your video I couldn't help but focus on the squiggly lines drawn on the white board behind you.
I forgot to ask, if you ever get neck pain. I find that if I have neck pain, my dizziness is worse.
Sorry to hear about your dizziness challenges. I can relate to a lot of what you've said here. Have you been to see a physical therapist trained in vestibular rehabilitation? There is a condition called cervicogenic (sp?) dizziness. It sounds like that could be a part of your problem. A PT might be able to help... with those neck issues. Note: I am not a doctor. Check out VEDA's website for more information about this vestibular disorder and others. Chronic subjective dizziness is another. I wish you all the best. - Randy
i have the same prob, neck pain and headaches common, dizziness to follow ,
Did she ever pass out?!
Marijuana? I have VM and most of the symptoms Sue is describing. I tried marijuana and it only added paranoia and hunger to my long list of symptoms. Not effective for me.
Me too!!!!
Sounds so much like my symptoms of TBI from tumor on cerrebellum...but worse.
shes describing me to a tee lol :)
I agree with reception being broken. I came in with the room spinning and the receptionist started asking my name and address, so I pulled out my license and handed it to her, and you would have thought that I slapped her.
Patient need to understand the registration clerk you talk to is just as important as the doctor and nurse. I work in the medical field and I also have Ménière’s Disease. Your medical care being at that front desk and I have seen many patient be rude, nasty and just down right ugly to registration for no reason at all. Some of you walk through the door within the wrong attitude. And you wonder why it took so long for you to be diagnosed. It may be you. No one like taking care of a nasty patient.
For 6 months now I’ve been suffering with dizziness/off balance/swaying and even perception issues. I had a VNG test done and I apparently have a 57% deficit in my left inner ear. I hit me randomly one day after I left the gym. I am 28 years old and the last 6 months have been a struggle to say the least will things ever get better? I do vestibular exercises 30-45 min a day everyday
I have been suffering for a year and half now, i was said i have unilateral vestibular hypofunction with chronic subjective dizziness
sound can hurt me
Sorry to hear that. Hyperacusis (sounds are too loud) is very scary. Here's an article that may be useful: vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/vestibular-hyperacusis/
I think it's genetic. I am careful what I eat and exercise would help a lot. Slowly healing from this type of symptoms.
As first a vestibular patient and than a medical worker I do not know why VEDA has this lady speaking to room of nurses. I do not find her attitude to be in the right place for helping patients with vestibular disorders or health care providers. She has a very negative tone that is clearly helping no one. I feel as if she is venting about her problems and issues instead of helping to care for or bring awareness to the people who’s she supposed to be supporting.
pleasant personable demenor
9 specialist and nothing. This is a sad state of medicine. Wonder if damage is caused by virus? Also, there is meniere's disease
Thanks Sue but talking to nurses is not the most helpful. They neither diagnose or prescribe treatment.
Nurses are often the first point of contact for vestibular patients in the healthcare system, and can influence how a patient is triaged. Increasing awareness and compassion within all parts of the healthcare system is essential, since it takes a multi-disciplinary team to effectively manage patient care.