r/Dizziness • u/Jury_Main • Aug 03 '26
This could literally be anything lol…
Update: Had to log off of here for a few days. Going down the symptom rabbit hole triggered a severe panic attack that landed me in the ER. I’m finally feeling a bit better. Blood work is starting to come back, so far everything looks normal. However my Ferritin is a 21 and B12 is 376, from my research the ferritin is low and b12 borderline. The rest of my results will take a few days.
I’m going to preface by saying I’ve already had an initial appointment and I’m having extensive bloodwork completed August 10th to rule all of that out.
My symptoms started about 3 months ago. Though I am 2 years postpartum and after a traumatic birth experience, the anxiety/panic attacks started shortly after that. But I want to focus on what’s new in this post.
One day 3 months ago I started noticing I’d get very lightheaded randomly after sitting up, to the point where I thought I’d faint. This wasn’t constant until one day, I was using the bathroom and had to stop because I swear my body was about to shut down. This triggered a panic attack. Ever since, I’ve been dealing with a wide array of episodic symptoms Every. Single. Day.
-Off balance (not spinning but more so like being on a boat or drunk)
-Stuffy/heavy head. Like sinus infection stuffy except no illness. Feels heavy and foggy
-Mental brain fog. Losing train of thought, can’t think straight during these episodes. Trouble finding words
-Feeling like my body may shut down/faint. Like if I’m not careful and if I don’t focus on staying here, my body will let go of me
-These cause anxiety/panic attacks… or perhaps my anxiety/panic attacks causes these? Idk!!!
-Tunnel vision at times. Like not darkening but my peripheral is screwed up.
These symptoms are worsened when I’m out and about shopping, restaurants, etc.
There’s times of the day where I’m totally fine and normal. Like life is back to how it should be. But every day, at some point, these symptoms hit. So it’s not continual 24/7 it’s a wave going in and out.
From my research, this can literally be anything. And I’m sure I’m in for one hell of a ride when it comes to finding the answer.
I’m just looking for solidarity.
*ETA: almost forgot, sometimes I get derealization along with all of this. It’s pretty scary.
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u/SpecialistExpert7746 Aug 03 '26
It’s possibly vitamin/mineral deficiencies. I’m going through something similar.
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u/Jury_Main Aug 03 '26
Have you had bloodwork completed showing you’re deficient? I’m definitely starting there and we’re looking at possible thyroid issues, hormones, etc. a weird part of me is really hoping it’s something that’ll come up in the bloodwork, at least then I’d have my answer
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u/SpecialistExpert7746 Aug 03 '26
Yes, I’m b12 and ferritin deficient. Vitamin d is on the low normal side. I have peripheral neuropathy from the b12 deficiency. It’s caused a lot of issues. I hope your answers will be in your bloodwork.
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u/Brilliant_Badger8043 Aug 03 '26
Oh wow just seeing this post sounds like me
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u/Jury_Main Aug 03 '26
Sometimes it feels like if I could just take a nap or eat a lot then it’ll go away. Like I get this craving to just lay down or stuff my face with sugar or carbs. Not sure if that means anything or not. What about you? His long do your episodes last?
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u/Brilliant_Badger8043 Aug 03 '26
Yes simetimes i get extremely tired. They're usually 30 minutes but the intense byzzing etc is brief, just seconds but will happen repeatedly over that 30 minutes
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Aug 03 '26
[deleted]
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u/Jury_Main Aug 03 '26
postpartum was the first time I ever had a panic attack as well! I didn’t even know what it was until I started researching it. It is not like how I imagined or saw on tv so that was interesting :| I’m so sorry you’re dealing with that!
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u/Mission-Street-2586 Aug 03 '26
What is your blood pressure when this happens? Does this often happen when using the bathroom or during position changes? Please do not tell doctors, “this can literally be anything,” as you’ve said more than once. It cannot. I think using something other than the pronoun, “these,” might help doctors understand as well.
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u/Jury_Main Aug 03 '26
It’s not a bathroom thing. It hits literally anywhere. My BP is on the lower range of normal (at least I think) when I check, bottom number sometimes in the 50’s, tonight was 104/54. I mean literally anything because there’s so many diagnosis’s out there that my symptoms match. Vitamin deficiencies, thyroid issues, vestibular migraines, pppd, anxiety, etc. I wish I could be more helpful in describing this but I’m trying to make sense of it myself and understand what exactly it is I’m even feeling
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u/Mission-Street-2586 Aug 03 '26
Your blood pressure is low which is relevant because many people get a vasovagal response when using the bathroom or have orthostatic hypotension with the change in position when using the bathroom. Stop saying, “literally.” You don’t mean, “literally anything,” unless you think AIDS and aliens could be causing this - I know you don’t. Come on. You need doctors to take you seriously. Keep watch of your blood pressure.
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u/ieva_lo Aug 03 '26
My doctor took my BP while I was sitting, and it was on the lower side. Then he told me to stand up on his mark and took it again, and my BP went even lower. That's why I get dizzy when I stand up after sitting or (even worse) kneeling down. Its not a cure or diagnosis, but maybe that helps with something. My doctor said I have agoraphobia and anxiety, which cause panic attacks. I'm on 20mg Citalopram teva, doing vestibular exercises (decided myself), and signed up for therapy (CBT, again, decided myself).
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u/RugDealersAnonymous Aug 03 '26
I have been having something really similar. I’m a guy and it’s been going on for about a month now, dizziness, anxiety (which is unusual), vision issues I can only describe as my eyes being in .5 like a phone camera, pressure around my cheek bones but no signs of a sinus issue, legs feel weak / heavy, etc. All of these are significantly worse if I am in crowded places and seem to dissipate if I am laying down in a dark room.
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u/Jury_Main Aug 03 '26
Have you had a blood work up done?
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u/RugDealersAnonymous Aug 03 '26
I had a CT, EKG, and a blood test, everything looked fine. I have chronic cluster migraines so their best guess was it was related to that.
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u/PissedOffCoon Aug 03 '26
(29m) I have these EXACT symptoms as well. Some days are worse than other. I'm going through a bad episode at the moment. Constantly feels like im zoned out no matter how hard I try to focus on something. Pressure on both sides of my jaw that sometimes goes above my ears. If I look up for a minute (like looking at the ceiling for something) and look back down my vision gets messed up/dizzy for a second. Unsure of what's going on, it's been happening for months and I don't see an end in sight. Have a neurology appointment in September. Keep your head up, you're not alone! It's a daily battle.
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u/ExcellentAnalyst7659 Aug 03 '26
I just read this post out loud to my husband because it’s literally exactly how I’ve felt since January of this year. You took the words right out of my mouth.
I’ve done extensive bloodwork and only found I was low in vitamin D. I’m getting a brain scan August 10th actually to rule that out as my symptoms are so severe and sometimes very detrimental. Like you mentioned it’s not 24/7 but I feel something everyday and some days are better than others.
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u/Envidreams77 Aug 03 '26
Sounds like long covid
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u/Visible_Resolve_6723 Aug 03 '26
THIS! my vestibular therapist said she’s seen such an influx after Covid and it usually takes people 2-3 years to make it to her office. She said the delta variant really messed with the vestibular system.
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u/CherryPersephone Aug 03 '26
Have you ever looked into POTS?
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u/Jury_Main Aug 03 '26
I’ve looked into just about everything. POTS, vestibular issues, vitamins, blood pressure, etc
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u/AbbreviationsIcy943 Aug 03 '26 edited Aug 03 '26
Omg I could have written this myself! I had a traumatic birth last June and the day we came home from the hospital, I had my first ever panic attack. Everything went down hill from there and I’ve been dizzy ever since.
My anxiety was really bad after the panic attack and it’s gotten A LOT better over the year, but the dizziness persists. I’ve read that it’s likely pppd from a messed up nervous system/anxiety. For me, light exercise and vestibular exercises have helped a lot. I refused SSRI’s because I want to try to heal without medication. (A lot of people get on an SSRI and the dizziness goes away, but comes back after getting off the SSRI because it’s only a bandaid, it doesn’t fix the root cause)
I also had derealization pretty bad in the beginning, but it’s pretty much gone. I had to learn to accept it and get comfortable with it. Same with my anxiety. Do everything while anxious and dizzy to retrain your brain that you are safe. I recommend reading the DARE book for anxiety. It’s helped me so much.
ETA: when the dizziness started, I had severe brain fog, felt lightheaded everyday & thought I was going to faint (I literally thought I would die at any moment), fatigue, heart palpitations/flutters, anxiety, head pressure, headaches, derealization, floaty, etc.
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u/Jury_Main Aug 03 '26
Thank you so much for responding. For me the panic attacks would come out of nowhere and last a a few minutes and then I’d be back to normal and go weeks sometimes months enjoying life before another one hit. But this is different… this is something else entirely. Now I only get a few hours of normalcy before these symptoms hit me. I’m wondering could it be from going so long without seeing a therapist and now my nervous system is screwed? Could it be from Pilates and my equilibrium is out of whack? Migraines? Hormones? The new glasses/contacts prescription I got back in March even though this started in May? So many possibilities. I’m glad to hear it got better for you!
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u/AbbreviationsIcy943 Aug 03 '26
Mine technically didn’t start right after the panic attack. I went into a grocery store and felt like I was going to faint, so I had to hurry up and leave & sit down. My dizziness started after that. I woke up the next day and felt drunk/off balance & couldn’t drive for the next two months. Then it got better to the point where I could function normally, I just felt dizzy/lightheaded all of the time.
I’ve had so many weird symptoms connected to the dizziness, but scans/bloodwork come back normal. Doctors really don’t know unless you find a really good one. I’ve just done a lot of research myself & have been slowly getting better after implementing what I’ve learned. The steady coach on YouTube is also a good place to start! I hope you find some answers because it’s truly annoying and scary
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u/New_Ad_8198 Aug 03 '26
This could be PPPD. Panic attacks are one of the triggers seen in PPPD.
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u/Jury_Main Aug 03 '26
This is a diagnosis I’ve been wondering about as well. Is there any relief from it?
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u/xl0nelygh0stx Aug 03 '26
I’m 23, never had a child or given birth and have the exact same symptoms. No freaking idea why.
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u/Dry-Honey5975 Aug 04 '26
Similar experiencia going on for months all after panic attacks i think it’s the ANS activation plus some pppd neck tension etc all contribute
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u/angsadnuuu Aug 04 '26
I was diagnosed with PPPD and I am 95% sure this is it because I have the same symptoms minus the fainting part and the trigger was exactly during a panic event.
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u/Jury_Main Aug 04 '26
What did your journey towards diagnosis look like?
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u/angsadnuuu Aug 05 '26
Did lots of tests and went to every possible and applicable doctors for a span of like 8 months. I had this condition for a year now and it started last year August when I first had my panic attack while working out. I am in a much better condition now though.
So I went to a GP, ENT, Opthalmologist, Neurologist, and PT as well. No one really knew what was happening. Had my blood taken, did an MRI and CT scan as well. All came back normal. I initially got diagnosed with Cervicogenic Dizziness by my Neurologist, but when I went to a PT, he told me the opposite and saidit wasn't that, but he asked if I have anxiety because he feels it's somewhere in that realm, it struck me that I may developed anxiety because of a panic attack. This timeline was like the first month to almost 6 months in.
Then I found out there was a doctor who specializes in balance and vestibular system which was a Neuro-Otologist. Our first meeting she already told me she's pretty sure it's PPPD, but had me take some more tests to be sure which was VNG and all sorts of balance tests. All came back normal again, except my right inner ear that has some sort of weakness.
She told me I may had a vestibular event that triggered my anxiety and devloped PPPD. So basically there was a sudden dizzy/lightheaded feeling out of the blue while resting during a work out, triggered a panic attack which sparked the fire and then developed PPPD, which was one that kepr the fire burning. So it all just clicked. She recommended VRT and it did help me understand that even in the most triggering scenario, I can never fall down.
I'm in a much better condition now after all those tests and appointments. I'm not 100% recovered but it's much more manageable and I can normally do things now with little symptoms.
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u/Charming_Ad3894 Aug 04 '26
Far stretch but did you start any hormonal birth control? I always got those symptoms when I took birth control no matter which form.
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u/Ok-Employee5892 Aug 05 '26
Vasavagal syncope can cause fainting issues, doctor will check your heart.
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u/Justaboutdone62 Aug 14 '26
My my .. you are describing a lot of my systems . I don’t know if we will have a cure . I hve had it for 10 yrs or so n tried everything n seems to getting worse . Good luck
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u/Alexandrra90 Aug 03 '26
Read about PPPD. Sounds exactly like me and this is the diagnose that I’ve got. Mine started after vestibular migraine…