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Has anyone here had PPPD?

I have been struggling with vertigo for one and a half month now, and I think it's PPPD. My doctor thinks it has to do with my vegetative nervous system, but couldn't provide anymore answers to what causes it. I have an iron and B9 deficiency, but that seems to be a seperate issue. The neurologist did not find anything concerning. I do not have constant spinning, it is specifically when I move my feet or head that it feels like the whole environment is moving. It is better in large open spaces, and worse in small cramped spaces. I never have it in the morning upon waking up, it always starts a little later into the day. I take Betahistine which I need to taper off in a month. It is truly annoying and in the beginning I was super scared that a serious problem caused it. Now I have read a lot about vertigo and I think it is this rather harmless condition. I hope it will disappear with time as I stop feeling anxious about it. I have also been taking Adaptol (Temgicoluril) for a month, which I stop taking now. Anyways I am just curious if anyone else had experience with this because it's such a crazy condition, especially when the doctor is very dismissive. I am seeing my doctor again in two months when I take a new blood test to find out how well I've absorbed the iron and B9 supplements, and then I will ask her about PPPD if I still have vertigo by that time. I might also see someone who can check if it's a problem inside the ear, but I doubt it since I have no other symptoms in connection with that.
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CrazyMusicLover · 31-35
I've never had vertigo but lots of spells of lightheadedness and dizziness like rocking on a boat from side to side. Some caused by astigmatism/weak eyeglasses, some due to magnesium deficiency and some hormonal because they appeared about a month after I got off BCP and after I started taking it again. Magnesium is the first thing I always reach out for when I feel off and it usually helps. Magnesium and sometimes B-complex. I'm also sure it's linked to increased stress for me because I definitely had more of these spells throughout 2020 which basically peaked into tetany attack which finally helped me to learn that magnesium is the answer.

I also had anemia in past but I can't even tell which symptoms were caused by it because I'm sure I already had yet-undiagnosed hypothyroidism as well. Either way, dizziness was there but POTS even more. Buzzing in ears, seeing white noise, shaking, weak muscles, going to faint...
Nightwings · F
@CrazyMusicLover Ohh my gosh I looked up magnesium deficiency symptoms and I have like a million: Muscle cramps in the calves, spasms, numbness or tingling in the extremities, general physical weakness, irregular heartbeats and palpitations, insomnia (really bad lately), heightened anxiety, irritability, difficulty concentrating, nausea, migraines and bad PMS symptoms (much worse these past 5 or so years).

I am definitely gonna get tested for that. I have been on acid suppressors for many years, and it could have caused more than the two deficiencies I found, so it's not unthinkable at all. All my weird symptoms also started a couple years after taking the acid suppressors daily.

I was told by my doctor that I can take B-complex for 10 days or so, but she doesn't want me to take it for too long. When I tried it, it upset my stomach quite a bit, did you ever have that issue? It might be because I have a condition called chronic pancreatitis (very mild form though).

I occasionally get super dizzy and almost faint, but it happens quite rarely and I never fully fainted. It was never when I stood up or sat down, but just out of nowhere, and it stops as suddenly as it starts. I also think my blood sugar sometimes drops, in which case I get super dizzy, weak, shaky, and hungry and nauseous at the same time. 😅 My blood sugar is always literally perfect whenever I tested it though.

I see some white noise too, and little dots that like slowly fall down in front of my vision. This is just in general and has been worse since the vertigo started. I don't get the rocking from side to side feeling, it feels more as if the floor is moving in the opposite direction of my body, giving out under my weight as if it's not sturdy, and sometimes like the whole environment is moving + occasional lightheadedness. It's pretty much all the time for me and my balance and coordination is off. /=
CrazyMusicLover · 31-35
@Nightwings You can get tested for magnesium deficiency but my endocrinologist told me it's pointless because you might have enough magnesium in blood but not inside the cells and that is something doctors normally don't measure. She told me that if I think I might be deficient I can simply take it because the only symptom of taking too much is diarrhea so if that's the side effect it's s sign you don't need to supplement it anymore.

This is also a problem with some brands that sell magnesium bisglycinate that has higher absorbtion rate and since it's promoted so much some people who don't even need such high doses take it and then complain about diarrhea. 😅
I buy this form and never had this problem so I guess I never have healthy levels of it or I have good judgement about when I really need it. Idk really.
You should definitely see an ENT specialist to rule out inner ear disorders. You should have a blood test as well. You should also not rule out the extent to which anxiety can cause physical symptoms. I had two years of constant dizziness and head pressure that was only relieved by starting on SSRI antidepressants.
Nightwings · F
@ostfuidctyvm I had some bloodtests already, that's how I found the iron and B9 deficiency, but I can't remember everything they did or didn't check. I take vitamim D3 and iodine supplements too btw (I wasn't tested for those, the doctor just thought I might need them). I think I have a very sensitive nervous system and I'm also prone to migranes that cause partial blindness or zigzaggy lines, and if I understand correctly there are links between these issues and vertigo. I have stopped feeling anxiety now which made general dizziness go away completely. Vertigo is still here without anxiety though. My doctor had me take a depression and anxiety test and wants me to keep taking it periodically, but the thing is I'm afraid she'll recommend anti-depressants because I really don't want to take those. 😅

 
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