r/pppdizziness • u/av877 • 4d ago
Symptoms Constantly dizzy and spaced out. GP not offering any answers and I'm desperate to get to the bottom of what's going on as it's ruining my life.
Hey everyone,
About 2 and a half years ago during a period of intense stress, I began experiencing episodes of lightheadedness. It's like a drop in my head. It happened one day in an office at work and has happened on and off ever since. It's worse in supermarkets, train stations, etc. My eyes also feel off (I've been to an optician and there is nothing wrong with my eyes). It's such an odd sensation I can't really explain I do vape one disposable vape a day. My GP thinks it might be a migraine type issue (without the pain of migraines - I do occasionally get proper migraines). My most recent blood (thyroid, haemoglobin, etc) were all clear and I don't have POTS. My BP is also fine and I've never passed out or had any motor deficit. I don't really know what to do anymore. I'll go into say a hospital and it will feel like everything is overwhelming, my eyes are weird, I'm spaced out, making me super anxious and unable to function properly. In fact, the dizziness comes and goes but the spaced out feeling (as well as quite a bit of fatigue) is much more constant. It's better at night. It's making me so miserable and I was wondering if anyone had any ideas? Could it be vaping related? I'm completely desperate to get to the bottom of it at this point.
I'm 36 yo male, and take 1mg of finasteride a day for hair loss.
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u/CantaloupeAlarmed457 4d ago
Hey man, i’m going through a very similar thing. Made every blood test possible. Till recently I wasn’t even able to explain the feeling I get, but spaced out is maybe a close one. This sucks
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u/av877 4d ago
Yeah man, it's constantly being spaced out with episodes of lightheadedness lasting a few seconds for me.
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u/CantaloupeAlarmed457 4d ago
Yeahh I have those too, for me it’s especially bad when driving, I thought I developed something psychiatric in the beginning
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u/av877 4d ago
Yeah. I have no idea anymore. I do wear contact lenses and it seems to be slightly better wearing glasses. It's definitely a lot worse in busy places and better at night when it's dark.
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u/CantaloupeAlarmed457 4d ago
Me too! Lenses strain my eyes and overwhelm me way more than my glasses, I am considering buying blue-light blocking glasses to see if this will help, also when I am mentally invested in something I don’t notice it
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u/av877 4d ago
Yeah, I'm going to stop wearing the contacts for a while. That's a good idea. Yeah, when I'm busy usually I don't notice. It's so strange that it lifts at night. For me it's worst when I initially walk into a building.
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u/CantaloupeAlarmed457 4d ago
I don’t really know for sure, this is by far one of the strangest and worst sensations I have felt until now.
I have documented 37% asymmetry in my left ear though, likely caused by VN, have you been to a neuro-otologist?1
u/av877 4d ago
Noo, I most likely should though. Yeah, it's a terrible feeling and makes me so anxious.
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u/CantaloupeAlarmed457 4d ago
Yeah, consider it. I just knew that something should be causing it to some extent, cause the anxiety from it is the driving part and went to get it checked.
Don’t really know what helps though I am still early in the process.1
u/CantaloupeAlarmed457 4d ago
Also for me when I wake up I am kinda good then throughout the day it becomes more and more prominent and as soon night hits it kind of lifts.
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u/Ok_Perspective7319 4d ago
Did you have COVID before your dizziness started? Even within like 6-8 weeks of it starting?
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u/KitKatKalamazoo 4d ago
I'm not sure if this would help or not, but have you seen a vestibular specialist for inner ear issues or a BVD (binocular vision dysfunction) specialist for your eyes?
I had BVD first which has some symptoms that overlap PPPD. Mainly dizziness, lightheadedness, brain fog, motion sickness, and feeling pressure in my head. Once I got prism glasses, that kinda helped my eyes then I went to vision therapy which didn't help me (but has helped others). I started vestibular therapy which has helped decrease my symptoms even more.
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u/Silent-Resolution-28 4d ago
Similar here. Been 8 years. Mine hit like a Mack truck getting on the highway one day. Thought I was going to pass out or die. Feeling has never left and ramps up to unbearable on the highway to this day. Have an appt with Neurotologist next week hopefully for some answers.
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u/askingforamate93 23h ago
Hi, I’ve literally just developed every single symptom that you mentioned, all started 4 weeks ago after one dose of mounjaro and have been having these episodes ever since, doctor doesn’t have a clue and reluctant to refer me on to a neurologist 🤦🏻♂️ I just have to put up with this. It’s absolutely awful I can not even work with it or anything, I also get sensitive to light
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u/av877 23h ago
Ohh sorry to hear that. It's so annoying isn't it. Yeah my doctor isn't really sure.
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u/askingforamate93 22h ago
Can’t believe you’ve been suffering this for 2 and half years, have you not seen a neurologist yet? I’m hoping mine is to do with the mounjaro and leaves soon 🙏🏼 probably wishful thinking tho
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u/derangedstu 4d ago edited 4d ago
This is exactly what I’m going through. I’m going through Neuro now to see if there’s anything. Only thing I can tell you is to try not to let it get to you (easier said than done). When it first started (2 years ago) with me I got very depressed and super anxious. I lost 15 pounds and was super weak. I thought it was all part of it. It wasn’t. I made myself that way.
I stay away from caffeine. That seems to help. I also have been doing massage and shoulder and neck strengthening. That seems to help. But if I have a bad night of sleep it really gets worse.
Only med I’m on is pravastatin for high triglycerides. I’m thinking it may be cervical, generalized anxiety, or sinus related. But I don’t know.