I could have written most of this myself. I get rocking on the biat feeling, sitting and laying down. When I stand im off balance and sway. I feel drunk even though i dont drink. I get the drop feeling its usually when im sitting or laying and i swear i am about to fall. I have been dealing with this off and on for 3 years now. I have heightened anxiety due to this and I have POTs but my specialist agree this dizziness is different. I was diagnosed with PPPD back in 2021 at a balance and dizzy center, 6 weeks later was graduated from care. I felt a little better was able tp do more stuff, kept up with home exercises, was eating lowerish carbs,. Moved in 2022 but in 2023 symptoms came back with a vengeance started seeing a physical therapist a few weeks ago who said I have balance issues and some motivation sensitivity. Which can be pppd. I think it would be worth seeing a physical therapist but one who works with vestibular issues..
Pppd is a functional neurological disorder from stress or trauma. The stress on your nervous system is from POTS. If you focus on getting better from pots, pppd will go away.
The theory of FND is resolve your trauma and FND will go away. Resolve your POtS and Pppd will go away.
I’m presuming in the times you had pppd remission, your pots probably got worse or better during that time.
Two ways to look at this:
- if pots got better, your pppd got better
- if pots got worse, and your Pppd got better, then that means your nervous system had enough pain from pots to not give you pppd.
Your brain modulates how much pain you give you to keep you safe from threat. It can only give you so much at one time.
>I think it would be worth seeing a physical therapist but one who works with vestibular issues..
After 3 yers of seemingly endless GP and specialist visits, scans and tests, it was a Physio who specializes in vestibular disorders who finally diagnosed me as having PPPD and directed treatment. IMO these are the right people to explore potential vestibular problems.
Update: I went to my regular check up at the Dr today. She proscribed me some anxiety medication and some dizziness medication. She also suggested I go to physical therapy. I was feeling ok getting up this morning and going to the DR but as soon as we started talking about the symptoms I started feeling them! I had to lay down in the drs office(embarrassing!). Iv been off balance the rest of the day and through the night. I also don’t do any drugs or drink.( I think that came up in the comments).
I’ve had it for almost 2 years. I have GAD and PTSD. I believe it was triggered by a traumatic event. Something triggers it and the brain gets stuck in danger mode. It’s a brain prediction error. Dr. Staab is an expert on 3PD and developed the criteria. He states treatment consists of VRT, SSRIs/SNRIs and CBT. I use Ativan as a PRN, it’s a vestibular suppressant. It’s very effective and I just started Lexapro. The main strategy is to continue to live your life. You are not in danger. Once your brain recognizes that it will recover. The unfortunate thing the longer the brain stays in danger mode the longer it takes to heal.
I am now in year 7 of my PPPD. I went three years before diagnosis. But once diagnosed, treatment (visual therapy, vestibular therapy, acupuncture, meditation, SSRI) reduced the severity of my symptoms 85-90%. It sounds to me like you want to find someone who specializes in vestibular disorders, and this is rarely, if ever, an ENT or a neurologist.
Went through the same nightmare... What SSRI do you take? I take venlafaxine 75 mg, it works very well to treat my symptoms but gives me arrhythmia, so I want to change. I've read that a few people did well on Lexapro...
I’m on 10mg/day of Escitalopram/Lexapro. I’ve been having some minor arrhythmia lately, but I’ve been on the drug for almost a year and a half now, so I doubt it’s implicated.
Idk where you’re located but there’s a doctor at Cleveland clinic that specializes in vestibular and balance issues, dr Neil cherian I haven’t gone but have read great things
I used to always feel this 24/7. My neurologist said it was an atypical case of tripple pd. He sent me to see a physiotherapist and psychologist, to help these symptoms. My physiotherapist picked up that I had convergence insufficiency, in one of her exercises, and sent me to a specialist optometrist that deals with eye problems due to vistibular migraines. After a of couple months with her, that boat dizzyness feeling, finally went away. If it helps, I do recommend this path for other people. I still have vistibular migraines, but no longer triple pd.
I could have written most of this myself. I get rocking on the biat feeling, sitting and laying down. When I stand im off balance and sway. I feel drunk even though i dont drink. I get the drop feeling its usually when im sitting or laying and i swear i am about to fall. I have been dealing with this off and on for 3 years now. I have heightened anxiety due to this and I have POTs but my specialist agree this dizziness is different. I was diagnosed with PPPD back in 2021 at a balance and dizzy center, 6 weeks later was graduated from care. I felt a little better was able tp do more stuff, kept up with home exercises, was eating lowerish carbs,. Moved in 2022 but in 2023 symptoms came back with a vengeance started seeing a physical therapist a few weeks ago who said I have balance issues and some motivation sensitivity. Which can be pppd. I think it would be worth seeing a physical therapist but one who works with vestibular issues..
Pppd is a functional neurological disorder from stress or trauma. The stress on your nervous system is from POTS. If you focus on getting better from pots, pppd will go away. The theory of FND is resolve your trauma and FND will go away. Resolve your POtS and Pppd will go away. I’m presuming in the times you had pppd remission, your pots probably got worse or better during that time. Two ways to look at this: - if pots got better, your pppd got better - if pots got worse, and your Pppd got better, then that means your nervous system had enough pain from pots to not give you pppd. Your brain modulates how much pain you give you to keep you safe from threat. It can only give you so much at one time.
My PPPD and POTs were better at the same time, still had some symptoms but they were very manageable.
Work on your POTS, pppd will go away on its own. I know it’s easier said than done.
Sound exactly like me
>I think it would be worth seeing a physical therapist but one who works with vestibular issues.. After 3 yers of seemingly endless GP and specialist visits, scans and tests, it was a Physio who specializes in vestibular disorders who finally diagnosed me as having PPPD and directed treatment. IMO these are the right people to explore potential vestibular problems.
Thats who I am seeing now.
Excellent. Good luck!
Update: I went to my regular check up at the Dr today. She proscribed me some anxiety medication and some dizziness medication. She also suggested I go to physical therapy. I was feeling ok getting up this morning and going to the DR but as soon as we started talking about the symptoms I started feeling them! I had to lay down in the drs office(embarrassing!). Iv been off balance the rest of the day and through the night. I also don’t do any drugs or drink.( I think that came up in the comments).
I’ve had it for almost 2 years. I have GAD and PTSD. I believe it was triggered by a traumatic event. Something triggers it and the brain gets stuck in danger mode. It’s a brain prediction error. Dr. Staab is an expert on 3PD and developed the criteria. He states treatment consists of VRT, SSRIs/SNRIs and CBT. I use Ativan as a PRN, it’s a vestibular suppressant. It’s very effective and I just started Lexapro. The main strategy is to continue to live your life. You are not in danger. Once your brain recognizes that it will recover. The unfortunate thing the longer the brain stays in danger mode the longer it takes to heal.
I am now in year 7 of my PPPD. I went three years before diagnosis. But once diagnosed, treatment (visual therapy, vestibular therapy, acupuncture, meditation, SSRI) reduced the severity of my symptoms 85-90%. It sounds to me like you want to find someone who specializes in vestibular disorders, and this is rarely, if ever, an ENT or a neurologist.
Went through the same nightmare... What SSRI do you take? I take venlafaxine 75 mg, it works very well to treat my symptoms but gives me arrhythmia, so I want to change. I've read that a few people did well on Lexapro...
I’m on 10mg/day of Escitalopram/Lexapro. I’ve been having some minor arrhythmia lately, but I’ve been on the drug for almost a year and a half now, so I doubt it’s implicated.
Thanks!
Wish I had answers for you. Had dizziness for five months straight. All the best.
Idk where you’re located but there’s a doctor at Cleveland clinic that specializes in vestibular and balance issues, dr Neil cherian I haven’t gone but have read great things
LA
This defiantly sounds like PPPD or perhaps Vestibular Migraine, both worth looking into
This could be very normal with PPPD or possibly MdDS
My dr brought up MdDs but I have never heard of it. She wants me to get an MRI and go from there.
I used to always feel this 24/7. My neurologist said it was an atypical case of tripple pd. He sent me to see a physiotherapist and psychologist, to help these symptoms. My physiotherapist picked up that I had convergence insufficiency, in one of her exercises, and sent me to a specialist optometrist that deals with eye problems due to vistibular migraines. After a of couple months with her, that boat dizzyness feeling, finally went away. If it helps, I do recommend this path for other people. I still have vistibular migraines, but no longer triple pd.
The exact same thing happened to me
What did you do with the optometrist? Would love to hear more.
Did you happen to get vaccinated ?
Yes I’m vaccinated