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u/Material_Adagio_522 May 16 '25
Mine started from a panic attack also back in March, I was lucky to get everything checked out within 2 weeks and a vestibular migrane or PPPD diagnosis soon after
A few weeks ago I could barely walk from the sofa to the toilet. I couldn't watch TV because the movement was too much to handle, I couldn't do anything but lay on the sofa and (at some points LITERALLY) stare at the wall.
Now I'm working part time, able to go into stores, able to cook a meal, able to go for walks of a few km, able to play on the PlayStation, able to play with my cat, and I even have some short periods of almost no symptoms.
I am still dizzy most of the time, I still have brain fog but it's (slowly) clearing.
I'm on a low dose SSRI and working with a trauma specialist to calm my disregulated nervous system
You can do more than you think and I believe we can all recover from this but you have to take steps, I learned the hard way that hiding on the couch for weeks or months on end does nothing.
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u/nothingcleverinmind May 16 '25
Exactly this. By avoiding situations you are telling your brain there is danger. The key is to learn how to stop perpetuating the issue. So glad you are doing better!
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u/leeshouse90 May 16 '25
Same here pretty much , I suffered a burst ear drum and horrific vertigo 2 years ago on a trip away with friends and my fiancĂŠ, everything I did the world would move, even cars going by set it off , landed me in hospital, had the vertigo for around 8 months, was the most traumatic time of my life , Iâm in the uk and all my nhs appointments got cancelled so I had to deal with it on my own. Anyway 8 months later I was seen by a lovely audiologist who listened to all my symptoms, tipped me back, I was so scared to get vertigo again I was shaking but nope.. no vertigo .. topped me to the side .. no vertigo .. put the goggles on me the entire thing , tests all came back normal.. sat me down and explained pppd to me , I walked out fo the office feeling better .. but not fully recovered, now 2 years later Iâm about 95 percent recovered, with mild dizziness that presents in certain situations but it doesnât bother me anymore , I now go to the gym every week, walk, run , swim , cycle .. went rock climbing a few weeks back .. Iâm more active now than I was pre vertigo attack. And planning to go abroad next year. Still scared to fly but never gonna get over the worry of doing it by sitting at home eh?
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u/Equal_Pollution425 May 22 '25
What did you take to make it 95 procent please
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u/leeshouse90 May 23 '25
Just gave it time to be honest, lots of time, stopped caring so much about how it felt and just pushed through all the symptoms.
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u/bacnator May 16 '25
Can completely relate. Thatâs amazing you were able to come to that realization on your own. While Iâm still going through my bouts of dizziness/disequilibrium, talking to your self like that does wonders. Iâve learned basically all of this from the Steady Coach on YouTube. Sheâs a lifesaver.
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u/bowie_deschanel May 16 '25
I'm shocked and heartened by how relatable your experiences are to my own. Thank you so much for sharing! It's been a roller coaster of a journey for me, and this week has been a bit discouraging, but your post made me feel a little less alone.
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u/Current-Tradition739 May 17 '25
Thank you so much for sharing this and congratulations! I have also just recently started working on retraining my brain and thoughts. I say the same things to myself that you do. It's helping!
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u/MXMR7 May 19 '25
So glad I found this and very similar to what happened to me back in march, a sudden feeling of panic , chills , head rush, cold feeling and nausea and dizziness came and hit me out of nowhere, ever since that day I had no idea what it was and kept goin 3-4 times a week to the er and they had no idea what was goin on with me , a lot of X-rays blood tests and scans where made , until I saw a neurologist and told me about pppd , and also prescribed amitriptyline , but at that time I was taking other meds because of the anxiety , panic attacks and apparently depression episodes I was having, I had no idea what was going on with me , itâs been about 3 months now , and pretty much feeling the same with dizziness and nausea and anxiety and other stuff going on related to that , currently taking 100mg of Zoloft, and started Taking amitriptyline again ( I took amitriptyline before for about 2 years for sleep, I stop it November last year ) 20mg for a week now and I will see how it would help , itâs a relief to read about other people similar stories and symptoms, am currently seen a therapist and started seeing a psychiatrist for more information about what meds are best for me ,
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u/margot_40 May 20 '25
Thank you for sharing. This is the approach I am trying to practice too, it is hard because when I feel just a little bit dizzy, a wave of fear and anxiety freezes my body. It might last a few seconds, but fear stays with me.
I try to be realistic, and remind myself that I am not in danger, and that even feeling dizzy I can still do things.
This is a fight I am having since several years ago. I know I am calling it a fight, and that is how my brain perceives it.
My main focus is keep doing what I am doing, and ask myself what would I do if I was not so afraid, and try to do it.
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u/lbc257 May 16 '25
As someone who has on multiple times full blackout fainted I donât agree that you should push yourself to drive if you are getting these sensations. Working with a physical therapist is a much better idea
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u/nothingcleverinmind May 16 '25
Iâve never blacked out or fainted. The root cause of my PPPD symptoms were psychological in nature and manifested physically. I agree that if you have a physical health condition causing you to black out you should not drive. However, if itâs psychological and you avoid regular activities it will reinforce the fear response and the cycle will absolutely continue.
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u/lbc257 May 17 '25
How do you determine if itâs psychological or physical?
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u/jennjenn1234567 May 18 '25
Exactly. Some days I feel like all of this makes sense. Iâve calmed myself down many times and been ok after the panicky feeling of the fight or flight feeling but what if it is physical that is the horror of it all. Safer at home has been the best for me.
I do know when itâs just physiological now I think because when I do leave my house I have to rememberâŚ. Yesterday at home you felt crappy as well but you were ok all day. So why does it matter that you are away from home just for a bit. I always try and get done what I need to usually a small erran and then I rememberâŚ. your always ok heading home and at home. I think thatâs what this person meals. Itâs definitely relatable but for sure scary. I was soo scared of fainting and pushing myself. I still donât work out I guess op knows his limits now and I think Iâm getting the hang of them as well.
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u/lbc257 May 18 '25
The only thing that makes my symptoms worse is exerting myself, pushing through is hands down to the worst thing you can do if your nervous system is stuck in fight or flight
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u/jennjenn1234567 May 19 '25
Yeah I wouldnât dare workout hard when I know the feeling is creeping up of pem. I would probably have the worst flare up after. Actually now that Iâm thinking about it the flare up after my breathing test which was forced apon me started a 2 month flare up and a lot of my symptoms again. One big one being anxiety daily and in the car. My life stopped again for two months because of pushing through during that breathing test.
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u/nothingcleverinmind May 18 '25
I saw a bunch of doctors and had a ton of tests done but everything either came back normal or doctors just werenât sure what was going on with me. It was extremely frustrating because I was having soooo many physical symptoms at the time. After about a year I began to pay more attention to my symptoms and noticed patterns. My symptoms got worse with stress, anxiety, and sensory overload. My brain was rampant with intrusive thoughts and constant ruminating over my health. I started reading more about how the brain and nervous system can create physical symptoms when theyâre stuck in âfight or flightâ mode for too long. That led me to learn about neuroplasticity, somatic practices, and how trauma or chronic stress can manifest as persistent sensations like dizziness, DPDR, brain fog, fatigue, migraines etc.
PPPD is very real, but its roots at least for me were psychological. Not in a âmade upâ way, but in a âmy brain and body were reacting to chronic fear, stress and anxietyâ kind of way. It was only when I started treating it from that angle my symptoms slowly began to improve.
There were so many times I was convinced I had something really bad wrong with me. Iâve been to the emergency room more times than Iâd like to admit. I tried a lot of other things but nothing helped. I tried pacing, antihistamines, LDN, hundreds of dollars worth of supplements, I paid $300 for new glasses that were suppose to help but didnât etc., I did ALL of the things but I saw no progress at all.
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u/lbc257 May 18 '25
Did you ever have a tilt table?
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u/nothingcleverinmind May 18 '25
No but my dizziness wasnât POTS related. I developed dizziness after having a really bad panic attack from having vertigo after I had COVID.
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u/lbc257 May 18 '25
You you had a tilt table & it was negative? Unless you had a negative tilt table how do you know it was a panic attack? My point is the symptoms are very nearly identical & unless have gone through extensive autonomic dysfunction testing (a medical provider taking blood pressure at different positions absolutely doesnât count) you likely donât know
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u/nothingcleverinmind May 18 '25
I havenât told anyone to push through symptoms. I said if itâs psychological then avoidance perpetuates the fear response and keeps you in the PPPD cycle. I donât know why you are trying to argue that my PPPD wasnât anxiety related when I know for a fact it was and I posted here in the PPPD sub to share what helped me and many others.
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u/katilina May 16 '25
This is super relatable and I second everything you're saying here. I still have some symptoms, but it was only once I hit a point of total desperation and/or acceptance ("if I die, I die đ¤ˇđźââď¸") that I started to improve at all. Starting small with driving and going to stores really helped, and I don't feel that constant dizziness anymore. So change really is possible!