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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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OldBrit · 61-69, M
I have menieres disease and migraine associated vertigo.

I feel your pain.

Mine is more violent vertigo attacks. I can't stand, sit or anything just lay on the ground and wait for the world to stop spinning. I get nystagmus in my eye.

I then have constant balance issues. Try to get a referral to a neurotologist they specialise in this. I then went to a neuro-physiotherapist who was brilliant. I do exercises every day to reset my balance system. The took ages but they work.
OldBrit · 61-69, M
@Nightwings drugs, surgery, exercises done the lot. 😂
Nightwings · F
@OldBrit Is the nystagmus only during migranes? My migranes cause either partial blindness or zigzaggy lines but never headaches, and never nystagmus. :c
OldBrit · 61-69, M
@Nightwings nystagmus during the vertigo attacks. I get the scintillating scotoma during migraine. My migraine rarely have severe headaches
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...
CrazyMusicLover · 31-35
@Nightwings I take it in a pill form.
I haven't taken magnesium in a long time and B-complex even longer, so yeah, when it comes to these specific problems, I feel better. Possibly because it's summer, I get more sun and overeat on fruits. 😅 As for my problems in past, I feel incomparably better. For a long time I was in a state when I wasn't even aware that that was not a norm and that wasn't how most people feel and just push through. I had no energy, I was easily cold or suddenly very hot and sweaty, I had racing or strongly pounding heart for no reason, earthquaky feelings when lying on a bed, I had terrible periods and feelings like during period even when I wasn't on it, digestive issues (primarily constipation), frequent UTI, stiff muscles and back pain, I often felt lightheaded and like drunk when I didn't drink any alcohol, I felt inner tremor, anxiety, shortness of breath or like my lungs were restricted, internal discomfort in so many ways and in various parts of my body, sudden bangs as if from inside the chest/lower throat, I don't know how to describe it but it's a weird sensation. Overall, I felt crappy, like when you're about to get sick or when you're sleep deprived but that was how I felt all the time or most of the time.

And then there were those episodes when I knew it wasn't normal, like POTS when I got up, took a few steps and felt like going to faint, fast heart rate, buzzing in ears, seeing white noise, tremor, convulsing muscles that felt like giving way anytime and sometimes it was almost pleasant like falling asleep but I was aware I had to lean on a wall otherwise I'd collapse. This still happens from time to time but it's not that common and definitely not that intense. It just takes seconds and then I'm back to normal. That happens to all my family members from time to time too. Doctors?: "you just have low blood pressure, that is very common in thin young girls." 🙄

By the way, tetany attack felt very similar except that it's also accompanied by crazy tinging in upper jaw, teeth and fingertips.

Then I had something that other would call a panic attack but I don't because it's too mild in compare to what other people who were taken by ambulance described as a panic attack to me. I don't have the core reaction which is panic itself but it may work on the same principle. I simply get sick, it comes gradually, I get a dizzy "rocking boat" spell as if someone shook my brain or something, feel discomfort in stomach/gut, I realize my heart rate is faster, that I breathe fast, feel inner tremor in my arms and elbows and my thoughts are starting to get scattered, all over the place and my body is giving me a command: "you have to sit/lay down now or you'll faint." or "you need fresh air RIGHT NOW, you need to walk it off." I'd say it feels like being poisoned by something my body released comparable to when you get drunk and it suddenly hits your system that you're sick and need to walk it off. Like: "Move, move! Make your body digest this whatever it is." And when I can't move I have to focus hard on something around and control breathing, hold breath if needed, push the heartrate down.

And I found out it's often a rection to dehydration, motion sickness and sometimes even sudden change in temperature, like when back in 2020 wearing a mask I entered a store in winter and it hit me. Simply autonomic nervous system freaking out, reasonably or unreasonably. Also in 2020, it was also psychological after that tetany attack in the bus, it took some time before I retrained my body to not trigger this every time I entered a bus again or even when I stood on a bus stop. I felt the world shake and was like "hey, wtf do you think you're doing?" 😆
Nightwings · F
@CrazyMusicLover That must have been so scary to go through? I would have been so worried that something serious was wrong with me, like I was when the vertigo started. I never had health issues to the degree you did, but I can empathize with the surprise finding out not everyone feels like shit all the time. Due to low iron I've been extremely tired, but now I realize that it began a long time ago. I get tired just from sitting at my desk, which obviously doesn't require much energy, and have to go lay down on the couch for 5 to 10 minutes throughout the day. I didn't really realize how weird that is before thinking about it lol. Like I didn't feel this way in the past, but in the back of my mind I was like: "I just became old." 😆 Btw I think I've had a panic attack without panic too. I had a very high heart rate, swetting, mild muscle spasms, difficulty breathing, but no panic. I was confused about what was happening, but not scared because I could still breathe enough that it didn't actually worry me. I then had many episodes of high heart rate with no other symptoms. I think this happened due to my nervous system being super over-reactive after a period of high stress. I was also very sensitive to light and sound; the dog barking felt like a slap in my face. My vertigo started after this, which is part of the reason why I think it's PPPD. I blame my MIL who was here for a month stressing me out every day. 😩
CrazyMusicLover · 31-35
@Nightwings It only got scary when I read that those are common symptoms of MS. Especially when I was 20 and I didn't know I had astigmatism yet, so for a while I started seeing double, I noticed one eye was misaligned and I saw flashes of RGB instead of white on old projectors in school. That freaked me out at the time. Of course, I had visual snow and floaters too.
I m anaemic and I have been suffering big time.
@Nightwings have the supplements been helping?
Nightwings · F
@InterdimensionalSideEye Well so I've taken them for a little more than a month and they did not help so far, but I think that could be because of the acid supressors. I only stopped taking the acid supressors a week ago. 😅
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
@InfoTunaBotTheReturn 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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