Vertigo Like Illness. Need help with self diagnosing

Posted , 6 users are following.

Hi, for the last year and a month I've been dealing with severe symptoms that mimic Vestibular Neuritis, Labrynthitis, or other veritgo like disorders. Let me explain my story

Around a year ago in late May I was laying down on my bed. I had no woken up to this illness, I was actually about to fall asleep when I felt sudden and vast change in all my senses (My first thought was stroke/heart attack). Of course I'm not familiar with that, because at the time I was only 20 (am now 21). I got up, everything started spinning, my vision spinning, my sense of touch, I'm not sure how to describe, just simply shifted, and I could barely stand. I started to have my first ever severe panic attack, because of course I had no clue what was going on, with no previous anxiety issues. I had rushed to the hospital. After injecting me IV fluids, and calming me down I was sent back home. Of course I still didn't feel okay but I listened to the ER doctors because they said I was perfectly healthy and it was simply an anxiety attack. Okay, cool. I was exhausted after that vertigo bout, so I immediately fell asleep when I got back home. The thing is, I woke up the next day feeling the same. From the moment I got up, I had no sense of balance. I was grasping from wall to wall trying to figure out what was going on. Everything was still spinning, I started getting heat flashes, and of course started getting anxious. My senses were failing me I thought. My vision was now severely blurred also, and I had lost all sense of concentration and time. I rushed back to the hospital, again, they tell me I'm perfectly healthy. But one doctor looked at my symptoms, and I do believe thought they mimicked so sort of brain issue, such as a tumor or something. They also ran some stress heart tests, which gave mixed results, because with this severe vertigo, how do you expect me to walk or run and not passout. My heat seemed fine in itself though. So they decided to give me an mri with contrast. The thing is, for whatever reason, they blamed it on a tooth filling, they couldn't see any of my inner ear or sinuses or really my face even, just my brain. So, they ruled out brain tumors I'm assuming, but didn't see anything else because it was simply a black void on the images. 

Again, after a few days, they sent me home saying I'm perfectly healthy. At the time, I had never even thought of vertigo or balance disorders because I simply had never heard of them. For the next two weeks, I was completely bed ridden. I had no clue what was going on, vertigo attack followed up with panic attacks all throughout the day. The feelign was 24/7, it did not come in attacks. From wake up to sleep. My sinuses felt completely pressurized all over my face, I had aura fullness in my ears, and while my hearing was unchanged, I felt simply trapped in my head. It was like a trance. I could not do anything physical, and I could not focus on anything. That was the brunt of sickness, undeniably the worst part and I would never wish it upon anyone. Skip forward a few months, I had been to the hospital/primary multiple times to no avail. They had given me antibiotics instead of trying to diagnosis(Probably because I'm a young male and look healthy there's no reason to search further). I had a few bouts of pancreatitis caused by the antibiotics attacking my body, or maybe the vertigo and anxiety attacks simply destroyed my digestive system at the time. Back at the ER, they fast me for a few days and that was resolved. Now, I'm home again and I have lost 25 lbs in a month. I feel awful, still having this illness on top of it all 24/7 from wakeup to sleep. Some times worse sometimes better. It really fluctuated, and balance had not been resolved. I forgot to mention, after the first couple weeks my vision had gotten 100x better, but even to this day it is not full restored. Almost like tunnel vision in a way now. Focusing and concentrating is still a difficult task. For the next several months I have experienced severe headaches, I had not gotten headaches daily at any point in time in my life before this only when I had a cold(now resolved after using saline(salt water) flushes and spray  for a period of time. The sinus pressure is gone on my face as well through that. I had gotten severe earaches for a couple months through the hard winter months as well, but after awhile those stopped as well. I can only think of this as recovery since it's improving and not getting worse, but I'm a far cry from feeling normal again. I regained some of my former strength and stamina, while I'm still very weak and frail I can at least walk or ride my back out in the outside air. I am not completely bed ridden anymore. My vertigo attacks have stopped (not sure why, maybe healed slowly over the course of time). I still feel different 24/7 I still have aura fullness, and my senses are still slightly off (Really hard to explain unless you have dealt with this) I still feel I'm unable to work, but I'm slowly recovering a little and little more over time. My anxiety was shortly solved after the vertigo attacks were, through a lot of mental fortitude and stress relieving and relaxing activities. 

I have yet to be diagnosed though, my primary transferred in the middle of all of this, it takes forever to get appointments, the ent wanted 6 months of notes before she would even SEE me (Have yet to see any specialist regarding any of this) Because to everyone, I am perfectly "healthy" on paper. I've been tested for nearly every infectious disease out there including hep c and HIV. My blood work has been ran multiple times. I have had two MRI's, both again having my face appear as a black void but taken 6 months apart. Multiple CT scans, although I don't believe they were looking for a problem with my inner ear so I'm sure they looked over it. Multiple Xrays, nothing. Not one thing. 

They I researched, and researched. I have a life to live. I had to postpone my trip to start college this fall to spring because I still had not fully recovered even after half a year. I try to make it a point to exercise everyday, even though I feel uneasy with my senses being distorted and the aura fullness. I also picked tinnitus at some point, around the time of the ear aches. It only lasts for up to 10 seconds, although I usually have small vertigo like symptoms while it goes on. I am getting better, I know I am. I am asking you this community, on what would you think would be the best way to get into the proper specialists to diagnose these sort of disorders. Or if anyone trained in the area could give me helpful ideas to improve, or give me an idea of what you think the problem is so I can bring it up when I finally get another primary doctor. I have free health insurance, in the case that I have not been able to work for over a year. I am recovering with time as I said, it's just extremely slow and I know it's not life threatening at this point, and I would like to make a full recovery within the next 6 months if all possible so I can attend my college with no worries.

Please, and thank you for your time. 

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8 Replies

  • Posted

    You know what, I suffered from the exact same thing which you are suffering. But thankfully in my city (Kolkata, India) I am lucky to have the best doctors with good medical degrees from US/UK. Two things, I am sure you are not aware of. Firstly, when you are having multiple symptoms; it means you are actually suffering from anxiety attack on almost daily basis. Please stay hydrated (in excess) and avoid excessive sodium based diet. Stop judging your diesease from the internet. Since you are saying that you woke up with vertigo from sleep means you are suffering from either of the two dieseases (BPPV or Epileptic Vertigo). The former is harmless but the later one is a bit dissappointing in nature. Your doctor must have conducted MRI to rule out Epileptic vertigo, I guess. This kind of epilepsy occurs to 1 in every 1000 epilepsy cases or even less. You won't have a seizure which is a classical epilepsy. If you recheck your MRI plates try to see if there is tiniest of sclerosis present in your brain or not. Maybe you can discuss this with your doctor to rule this thing out. Otherwise it is a classical case of BPPV which I faced. I'm sure in both the cases you will not end up with hert attack or stroke. So chill out!!, but don't do any deep academic study late at night. Try to sleep well and work on improving your sleep. Indulge in 10-15 mins span medication. Definitely undertake PMR before sleep. Search for videos on PMR (Progressive Muscular Relaxation) in youtube. Don't worry, you can still be normal just like me. Dude, I am still comfortably doing my PhD research work which requires a lot of sleepless brain-work. Try to stay with some friends or family. This is the best way to gather some confidence to fight such misery. ALL the best!! smile

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    • Posted

      There's a misunderstanding, I did not wake up with it. It came abruptly out of nowhere as I was laying down watching a show. And I can assure you, I don't have anxiety anymore. These are just actual physical symptoms lol. I'm not stressed out like I used to. it's been a year. I get plenty of sleep. My lifestyle was lacking at first, but now it's relatively healthy again. I was very calm as I was writing this, I'm just genuinely curious on what's wrong with me. It's not BPPV. It's not positional and comes on in certain head movements, no it's just a 24/7 feeling. Epileptic vertigo is described completely different what I'm feeling so I'm pretty sure I can rule that out. A lot of the old symptoms have faded. It's just a chronic 24/7 distortion of senses, aura fullness in my ears and vision and concentration issues. My balance has improved greatly but it's quite normal yet. Thanks for the advice though.

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    • Posted

      I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired my stomach stays upset and excessive gas, I am from Delhi India

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  • Posted

    I also feel I should make this clear, I don't really get vertigo anymore. These are just chronic symptoms that came along with whatever gave me vertigo in the past. Perhaps a nerve was damaged and is healing? Who knows

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  • Posted

    Hi I read your message and like you I am also suffering from the same symptoms I have only just found this site and have put a message on just before yours.I have had all scans and bloods which come back fine.I was sent to see an ENT consultant and he said it sounded like menieeres  which is something to do with your inner ear and sending wrong messages to your brain which is why I think you get the headaches and the feeling of dread as I put it.It's horrible unlike you I am unable to leave the house unless someone is with me and find it really difficult to be in transport cause this causes the dizziness.Just feel helpless and unable to help myself I have been looking into homeopathy to see if there is anything that can help at least we know were not the only ones with it.Perhaps you could ask to see an ENT dr.Hope your ok

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    • Posted

      I really hope you can overcome this and made some sort of recovery as I have. I hope it's not meniere's disease as I heard that can potentially be life long. Yes, for the first half a year I'd say I had a really hard time even getting out of bed that was a task in itself. Transportation was just as awful for me, towards the beginning with the motion of moving it increased my vertigo 10 fold. I really do pray your symptoms ease up with of time. Don't give up, and best of luck to your recovery. 

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    • Posted

      Hi Edward... I had the same exact thing as you.  For me my symptoms started ten days after I had gotten the flu shot so I attribute it to that.  My body had some abnormal reaction to it since all other tested rules out anything else.
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  • Posted

    Hello, it's all super frustrsting. In april in was told I had labrynthitis from a sinus cold i had. My symptoms were swaying feeling, like rocking on a boat, and nystagmus(eye fluttering) in couldn't drive because it really threw my focus off. Grocery storess were really bad, and being in large crowds bothered me. Felt like I had drank a few alcoholic drinks. Walking felt like sponges or that in was walking ahead of myself. I lost weight too because I just didn't feel well. Ive been for mri ENT (useless) full blood work 2 eye exams etc...nothing came bavk. Felt like I was loosing it. I'm slowly starting to feel better. I've got an apointment for a dizzy clinic in my area in a few weeks, so will be interested to see what they say. My eyes are still the biggest issue. Still not 100%. I had really bad brain fog too.

    Sooo many people have these symptoms that regular doctors have no idea about. A neurologist may be able to shed some.light too if you can get referral. Get on cancellation lists too. It does goes away to some point, and when your not expecting it, you won't notice it anymore. Anxiety is huge with these sort of things. NOT what caused it, just carries it on because we don't know what's happening to us. Physio therapy helped me too.

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