I also suffer from it for 10 years now and only found out what I have last year. Is there a place where we can all go and discuss and keep up with each other's journey? Doctor's don't have the solution for this. Maybe we can reach out to more people and grow together.
Great video. Hit the nail on the coffin so to speak. I know I have PPPD but my family doctor keeps asking me to get on SSRI which I don’t want to so I’m stuck. Looking for other treatment options as my pppd has been with me for a few years now and I did have a triggering event which was a panic attack. I don’t live in the USA so is it possible to find overseas resources to help?
I am about to get prescribed an ssri to help with this. Might I ask your objection to it? I’m not trying to be rude, just like to see other viewpoints. The way I see it, in dealing with pppd for so long now it definitely has got me down and anxiety filled often. So if an ssri can help, I’m open to trying it. Although I don’t want to become dependent which I’m sure is part of your reluctance.
One thing I wish my PT was upfront about is that you will get worse before you get better, then you might get better and worse. It's like a rollercoaster. This is a good sign you are rewiring you neural pathways and your body is reacting to the exercises.
Such a good point, Megan! Some people do have quite a bit of a rollercoaster and it is important to know that flares of symptoms don't mean that you are going backwards, too!
@@reactivetherapy For sure! I thought I was digressing and inquired to my PT about my symtoms flaring up. She said it was a good sign! It meant I was rewiring the ol neural pathways.
I stopped doing them because it made it worse and I didn't realise you have to do them religiously not just when you feel dizzy. Bad advice followed by many lockdowns has prolonged it. I thought it was Labyrinthitis till last week. Going to stick at it this time!
Everything said in this video is correct. I was diagnosed with Vestibular Neuritis in June of 2022 and that was a horrendous experience! The suffering from that cased me to bloom into full PPPD for which I was diagnosed in October of the same year. Prior to the PPPD diagnoses, I had already checked myself into Vestibular Rehabilitation Therapy. Doing so helped to lessen the effects of what I could have been going through today. I still get disoriented from anxiety and complex pattern in stores but nothing like it was in the summer of 2022. I feel like I'm on the mend but it slow going. I'm going to check myself into some cognitive behavioral therapy to help with the anxiety. The doctor at Cedars Sinai who diagnosed me with PPPD told me that it was very good thing that I started VRT. He said who knows what state I would have been in had I not. I don't have any avoidance behaviors since I found out early on that doing so only prolongs the condition. I frequently visit stores and other venues to get exposure and it has helped. Again, recovery from this is very slow for me but there are improvements that I have noticed, specifically with computer screens. It used to be that within 10 minutes of using my computer, I was ready to fall down on the floor. Not so much now. My advice to you all is to keep going with any training and don't give in to the dizzy voice! Doing so will only prolong the condition!
@@yendryrojas Hello! So no, I don't take any medication for this condition. The research shows that taking medication for this condition only prolongs it. The brain needs to adapt to the new normal therefore, dulling the sensation to dizziness by interpreting the new, mismatched signals from the vestibular damage. The PPPD symptoms need to be managed with reducing anxiety and controlled exposure to the triggers.
can the fluorescent lights trigger it? Why kind of jobs can we do why we heal? I started wearing glasses when this happened, progressives, I finally went lined bifocal which helped. Can "the swim" which I never got over for 15 years have contributed? If a boat ride can why not glasses.
I was at around 7/10 normal until a big anxiety triggering event happened to me. I'm now at 4/10 and hoping I'll get back to what it was. Has anyone been good and gone back to bad and made another recovery?
@@lisamarie8406 kind of you to ask, I'm on venlafaxine and that's helped a lot. I'm also on propranolol too, I'm starting VRT but I'd say I'm around 6/10 and getting there for sure. My advice would be to be careful if you take anti depressants and come off them as I believe it was me coming off amitriptyline that caused it.
Thanks for the video, do you do any theropy across the internet as in Skype sessions or Teams. Gonna purchase the course, but wandered if you did private theropy on a 1 to 1 basis, just looking for advice, have suffered with these symptoms for about 5 years with all avenues of tests coming back negative. CT scans, blood tests MRI tests. Based in the UK, all of your PPPD videos describe my symptoms perfectly.
Hi Robert! Thanks for the comment. We are limited by our licenses to only provide therapy in CA and TX. We do have a network of providers though, so if you want to reach out directly to our office, we can look for someone in your area.
Anyone else triggered by low blood sugar? This is the only obvious trigger for me but sometimes happens after a meal. The doctors were unsure what it is as blood tests were fine and ECG also fine.
Hi Lucy--I have worked with people who had an initial trigger of low blood sugar. The drop in blood sugar can cause a dizziness episode that can cause you to be very reliant on their vision for balance and safety. This can trigger PPPD if it continues for greater than 3 months.
Hi Kin, It is tough when it has been going on for almost a year or more! The good news is that with a directed program--it can definitely get better! Reach out if we can get you connected to someone. Julie
@@MrTrizzle1982 Update: Diagnosed with Multiple Sclerosis about four weeks ago after an MRI scan. Brain lesions on the balance area of my brain (cerebellum). Might be worth looking into 🧠
@@KinEllKokabel I'm so sorry to hear and best of luck with your journey, yes I've had a MRI as I also feared the worst but no answers there, all PPPD symptoms I can relate to. I wish you all the best
Thank you for the helpful information. Ever since BPPV early 2017 till now experiencing rocking and swaying more or less depending on amount of movement and type of activity, and avoiding certain positions like laying flat on the back, thus sleeping on an incline. On a day off work, when relaxed, feeling fine usually. Anxiety,stress,panic,sensory overload lead to dizziness. Looks like compensation and rewiring hasn't properly worked. Recently had similar thoughts about gradual exposure to dizziness for getting better. More help would be nice.
Oh yes, that certainly sounds like you are ready for rewiring! If you can find a neurologic physical therapist--this would help you get on the right track.
@@yendryrojas Certainly don't think about it most of the time. But still do vestibular training exercises once twice a week for maintenance,exposure to dizzy movements like spinning for example, seems to have been crucial to get much better. Anxiety can contribute to dizziness too, but avoidance of fearful situations perpetuates fear and anxiety.
I also suffer from it for 10 years now and only found out what I have last year. Is there a place where we can all go and discuss and keep up with each other's journey? Doctor's don't have the solution for this. Maybe we can reach out to more people and grow together.
My PPPD wasn’t triggered by any other vertigo... I was going through a lot of emotional stress and it just came on very gradually
How are you doing now?
Same for me as well. High stress and anxiety with multiple symptoms and this being one of them.
Kenyaree Pinkos I still have symptoms 24/7 but they are gradually getting less intense and the bad days are less frequent :)
Mine also started after a severe anxiety attack, about two months later the dizziness set in and it’s horrible!
Me too Megan.. Exactly like you.
How are you doing now?
Great video. Hit the nail on the coffin so to speak. I know I have PPPD but my family doctor keeps asking me to get on SSRI which I don’t want to so I’m stuck. Looking for other treatment options as my pppd has been with me for a few years now and I did have a triggering event which was a panic attack. I don’t live in the USA so is it possible to find overseas resources to help?
How do you manage?
Im using SNRI (Pristiq) and its helping me with no side effects on the PPPD treatment
I am about to get prescribed an ssri to help with this. Might I ask your objection to it? I’m not trying to be rude, just like to see other viewpoints. The way I see it, in dealing with pppd for so long now it definitely has got me down and anxiety filled often. So if an ssri can help, I’m open to trying it. Although I don’t want to become dependent which I’m sure is part of your reluctance.
I also got Pppd or what feels exactly like mdds after I got a panic attack too... The boat swaying rocking sensation 24/7... How are you doing now?
@@ZowZout How are you ?
Loved the “avoidance” part.
What about avoidance?
nothing functional about it
Haha yes! Total misnomer
One thing I wish my PT was upfront about is that you will get worse before you get better, then you might get better and worse. It's like a rollercoaster. This is a good sign you are rewiring you neural pathways and your body is reacting to the exercises.
Such a good point, Megan! Some people do have quite a bit of a rollercoaster and it is important to know that flares of symptoms don't mean that you are going backwards, too!
@@reactivetherapy For sure! I thought I was digressing and inquired to my PT about my symtoms flaring up. She said it was a good sign! It meant I was rewiring the ol neural pathways.
I stopped doing them because it made it worse and I didn't realise you have to do them religiously not just when you feel dizzy. Bad advice followed by many lockdowns has prolonged it. I thought it was Labyrinthitis till last week. Going to stick at it this time!
Yesss! So true! Mine always get way worse when I start VRT
@@meganhenry5795 Hi! How are you ?
Good testimony
This video described what I have had for 2 years
I have suffered with this for 35 years. Literally. I need relief. Learning about neuroplastisity is helping. I appreciate your work. Thank you.
Glad it helped!
Everything said in this video is correct. I was diagnosed with Vestibular Neuritis in June of 2022 and that was a horrendous experience! The suffering from that cased me to bloom into full PPPD for which I was diagnosed in October of the same year. Prior to the PPPD diagnoses, I had already checked myself into Vestibular Rehabilitation Therapy. Doing so helped to lessen the effects of what I could have been going through today. I still get disoriented from anxiety and complex pattern in stores but nothing like it was in the summer of 2022. I feel like I'm on the mend but it slow going. I'm going to check myself into some cognitive behavioral therapy to help with the anxiety. The doctor at Cedars Sinai who diagnosed me with PPPD told me that it was very good thing that I started VRT. He said who knows what state I would have been in had I not.
I don't have any avoidance behaviors since I found out early on that doing so only prolongs the condition. I frequently visit stores and other venues to get exposure and it has helped. Again, recovery from this is very slow for me but there are improvements that I have noticed, specifically with computer screens. It used to be that within 10 minutes of using my computer, I was ready to fall down on the floor. Not so much now.
My advice to you all is to keep going with any training and don't give in to the dizzy voice! Doing so will only prolong the condition!
Hi! Take medication ?
@@yendryrojas Hello! So no, I don't take any medication for this condition. The research shows that taking medication for this condition only prolongs it. The brain needs to adapt to the new normal therefore, dulling the sensation to dizziness by interpreting the new, mismatched signals from the vestibular damage. The PPPD symptoms need to be managed with reducing anxiety and controlled exposure to the triggers.
Thanks for sharing! So glad you got into therapy quickly and you are taking so many steps to keep moving in the right direction!
Tk you for spot on advice & no nonsense to the point information 🙌👏👏
Glad it was helpful!
can the fluorescent lights trigger it?
Why kind of jobs can we do why we heal?
I started wearing glasses when this happened, progressives, I finally went lined bifocal which helped.
Can "the swim" which I never got over for 15 years have contributed? If a boat ride can why not glasses.
Thank you !
Good testimony
I was at around 7/10 normal until a big anxiety triggering event happened to me. I'm now at 4/10 and hoping I'll get back to what it was. Has anyone been good and gone back to bad and made another recovery?
It is common to have flare ups and be able to return to normal function again.
Are you better?
@@lisamarie8406 kind of you to ask, I'm on venlafaxine and that's helped a lot. I'm also on propranolol too, I'm starting VRT but I'd say I'm around 6/10 and getting there for sure. My advice would be to be careful if you take anti depressants and come off them as I believe it was me coming off amitriptyline that caused it.
@@lisamarie8406 do you have this issue?
@@UrbanTitanHD it could be. Wow thanks for responding.
So less avoidance is better for recovery?
Yes, in a graded way! Sometimes going to big with activity can cause a flare--but step by step is the way to go!
Thanks for the video, do you do any theropy across the internet as in Skype sessions or Teams. Gonna purchase the course, but wandered if you did private theropy on a 1 to 1 basis, just looking for advice, have suffered with these symptoms for about 5 years with all avenues of tests coming back negative. CT scans, blood tests MRI tests. Based in the UK, all of your PPPD videos describe my symptoms perfectly.
Hi Robert! Thanks for the comment. We are limited by our licenses to only provide therapy in CA and TX. We do have a network of providers though, so if you want to reach out directly to our office, we can look for someone in your area.
Are there any other treatments other than ssri's?
SNRIs work too. Depending on the person. Im using it
Functional neurology.
Yes. Physical and occupational therapy are very effective for PPPD.
What's an SSRI?
@@teenina6829 Selective serotonin reuptake inhibitors. A type of antidepressant.
Anyone else triggered by low blood sugar? This is the only obvious trigger for me but sometimes happens after a meal. The doctors were unsure what it is as blood tests were fine and ECG also fine.
Hi Lucy--I have worked with people who had an initial trigger of low blood sugar. The drop in blood sugar can cause a dizziness episode that can cause you to be very reliant on their vision for balance and safety. This can trigger PPPD if it continues for greater than 3 months.
Yes I do sometimes !
Does anyone who has make a remark live in New Zealand
Can PPPD be cured?
I’ve heard vestibular therapy helps. Good luck
YES! People with PPPD (and many other causes of dizziness) can have full recovery.
@@reactivetherapy what i have to do for being cured? 10 years i have vertigo
Are you better?
@@alexlee8639 your this word is everything for me. I need hope to feel better. I feel brain fog too
I’ve teetered for almost a year. It’s been ghastly
Hi Kin, It is tough when it has been going on for almost a year or more! The good news is that with a directed program--it can definitely get better! Reach out if we can get you connected to someone. Julie
Same! But I improved greatly with VRT.
Hi Kin, Can I ask how you are traveling with your PPPD I've had mine for 6 months now and life isn't good.
@@MrTrizzle1982 Update: Diagnosed with Multiple Sclerosis about four weeks ago after an MRI scan. Brain lesions on the balance area of my brain (cerebellum). Might be worth looking into 🧠
@@KinEllKokabel I'm so sorry to hear and best of luck with your journey, yes I've had a MRI as I also feared the worst but no answers there, all PPPD symptoms I can relate to. I wish you all the best
Thank you for the helpful information. Ever since BPPV early 2017 till now experiencing rocking and swaying more or less depending on amount of movement and type of activity, and avoiding certain positions like laying flat on the back, thus sleeping on an incline. On a day off work, when relaxed, feeling fine usually. Anxiety,stress,panic,sensory overload lead to dizziness. Looks like compensation and rewiring hasn't properly worked. Recently had similar thoughts about gradual exposure to dizziness for getting better. More help would be nice.
Oh yes, that certainly sounds like you are ready for rewiring! If you can find a neurologic physical therapist--this would help you get on the right track.
Hi! How are you ?
@@yendryrojas Fine
@@kredit787 How much has your dizziness improved?
@@yendryrojas Certainly don't think about it most of the time. But still do vestibular training exercises once twice a week for maintenance,exposure to dizzy movements like spinning for example, seems to have been crucial to get much better. Anxiety can contribute to dizziness too, but avoidance of fearful situations perpetuates fear and anxiety.
So you can permanently recover from it with neuroplasicity?
Yes! That's the beauty of the brain!
@@reactivetherapy That is the best news I’ve heard in a Long time!!! Thank you for that and for your video(s)! 🙏🏼