Hi everyone, I'm new to this page and just wanted to get my story out to people who understand what this terrible disease is like and hopefully get some advice back. Forewarning, this gets long. Right now things seem pretty hopeless to me, and in all honesty I have been fully considering taking my own life. Keep in mind I don't feel like killing myself due to depression. Before this crippling disease started really taking me down I was generally happy with my life and the direction it was taking. I'd like to get that back if at all possible, but if things keep going the way they have over the past few years I'd take death over this.
My story with meniers started seven years ago, and I'm 27 now. My first attack was very memorable and scary as I'm sure it was for everyone here. I was in the service while stationed in South Korea. At that point I had only been there for about three or four months when I started getting the classic fullness and tinnitus symptoms, but I had a lot of ear infections as a kid and I just figured that was all I had. I went to med center and they agreed that they thought it was just an infection even though they couldn't really see anything in my ear. I took the antibiotics and went back to work.
Luckily the dizziness hit me on a Friday night, my ear popped while I was laying in bed after having a couple beers out in town, I had a good buzz so when I started getting a bit dizzy I thought nothing of it and was pleased that I could start to hear again, so I closed my eyes and that's when it really hit me, my head was spinning so fast that I couldn't even tell which part of the room was up and which was down, I'd never been anywhere near that dizzy in my life from anything, then almost immediately the nausea moved in and I stumbled/fell into the bathroom and proceeded to experience the worst hell I'd ever felt. I have a high tolerance to pain and suffering but this broke me more than anything ever could. Crying like a baby, confused, I thought maybe I'd been poisoned and was dying, I sure felt like I was, maybe it was radiation poisoning, I didn't know. I ended up throwing up until the spinning slowed enough to close my eyes and fall asleep.
The next day I went back to the doctor, told them what I experienced and they just said it was my ear infection, I felt a little better and my ear was totally clear again, that lasted for a week before it filled again, the next attack wasn't as severe and I was prepared for it, I called my platoon Srg told him that my ear infection was back and was making me sick. He was a pretty good guy so he didn't give me too much hell but I knew if this persisted I could get medically discharged, I didn't want that so I kept my suffering to myself as much as possible. Luckily most of my attacks hit me on the weekend and then a month or so later they stopped all together, my hearing came back and I was back to normal.
My next cluster hit me pre deployment, where I was then stationed in New York a year or so later. We were doing lots of drills and had weeks of field time preparing to deploy, these were more manageable, I only had one bad one that was almost as bad as my first one, but I was able to work through the others, sometimes barely, and usually I'd get dizzy at night so no one could tell how bad I was stumbling around, my head just felt like a cinderblock. I was scared to deploy with this going on though, luckily the clusters ended, I went through my deployment mostly symptom free, which I find funny considering meniers is stress related in most situations.
However there was one severe attack I had, that put me in the medic tent overnight. The medics all thought I was on some sort of drug, I had to tell them over and over that I hadn't taken anything, they put me in a cot and basically accused me of taking drugs for over an hour while checking out my eyes, which of course were abnormal, then they made my hell even worse by shaking my head around as fast as they could saying some sh*t like they had to break the crystal loose, I still to this day don't have a clue what they meant by that, I was literally being tortured by medics. I started puking everywhere and they stopped, put me on a saline iv with some sleeping meds in it and knocked me out for the night. I woke up, felt normal, and went back to work, people in my platoon asked me about what happened. They knew I wasn't taking anything and I just said I had no idea and neither did the medics, I pushed that night from my mind and didn't have any issues the rest of my time in.
I no longer trusted military medical personnel to figure out what I had wrong with me, but eventually got seen by a specialist for my hearing loss and vertigo as I was preparing to exit the Army, he simply didn't have the time to conduct all of the tests he needed to diagnose me before I was going to get out and fly home.
So I went to see an ENT once I got home and after describing my symptoms he told me he was almost certain it was meniers but I could not afford to take any of the tests since I had dropped most of my savings into skydiving, I was admittedly young and dumb. He gave me a print out of the diet plan, gave me a prescription for a diuretic and anti-vert, told me there really wasn't a cure, and to come back if it gets worse. The bill was not cheap to say the least, but I paid and went on my way, I wasn't experiencing any of the symptoms anymore and they stayed away for so long that I thought it had just burned itself out as it does in some cases.
But here we are now, my visit with the ENT was four years ago , ive got my dream job working in skydiving, and currently working a second job in structural iron work. I've had a few attack clusters over the past few years, some just as bad as the first, but most were usually manageable, up until a little over a year ago. The fatigue has been pretty bad this time around, and my symptoms never fully go away, I used to live a super active life, I live in the Rockies so I'd hike nearly every day on top of having active jobs. I miss that all the time, but now I barely have the energy for work, I basically go to work, assuming my ear hasn't been full for two days (it almost always pops on the third day) and then go home and sleep, my vertigo episodes have not been near as violent until my most recent attacks.
The past two floored me, and my last one to happen, today, has been the most violent attack I've ever been through, it made my first attack seem mild. I've been following my meniers diet to the T for the past month, I've been avoiding stress, sleeping well, went from an occasional smoker to a non smoker, stopped drinking alcohol, and drinking more than enough water. But for the past TEN days my ear was completely full, up until this month the longest my ear stayed full was three days, so I thought that this lasting ten days was pretty strange, the tinnitus was intermittent, but my hearing loss started feeling permenant, I was actually adjusting to not being able to hear out of my left ear and no other symptoms were ever present, so I kind of got used to it, I was about to get the day started and go pick up some decongestant at the store, because with my ear being full for ten days I was starting to wonder if this was even meniers anymore. But then I didn't feel a pop, I felt what almost felt like a slight burst of adrenaline with a foreboding feeling of doom (sorry that's the best I can describe it) and the back of my head started tingling. I decided to hold off on getting ready and got back into bed just in case my ear decided to pop, I just knew I felt weird, I got up to use the restroom and test my balance, it felt a little off but not bad on my walk to the restroom but almost as soon as I turned on the light the room went sideways and the spinning just kept getting faster and faster until everything was a complete blur, by this point I'm very accustomed to vertigo but this was 10x worse than even my first attack, and had kept my ear full for ten days, it was like meniers on some serious steroids plus some extra symptoms I'd never experienced with meniers until now.
They say meniers isn't fatal, but even with that knowledge I felt that this acute of an attack could very easily kill me, I've feared for my life a lot, but I've never felt quite as close to dying as I did today, my roommates had all left for the day and I was home alone, I couldn't see strait enough to even attempt to use my phone, no one could help me. I had an empty stomach when it started at about seven in the morning, and the meniers diet doesn't really allow you to eat much of anything in America so I am already slightly malnourished as is. I started throwing up the little I did have in me until there was nothing left, and was in an endless dry heave spell for at least an hour strait, I couldn't stop, the spinning didn't let up at all either, eventually after some serious focus I slowed my dry heaving down and eventually stopped it, but was left sweating like I'd been in a sauna for hours. I fell over onto the bathroom floor, and laid there for about a minute barely able to breath, I managed to crawl to my room, it's only a couple feet away from my bathroom and grab a blanket, stumble, run, crawl my way back just in time to start heaving again from the little movement I'd just made. Heaved nonstop for another thirty minutes or so, it was starting to become a very sharp pain, the kind of pain so sharp that damage had to be happening, yet I couldn't stop the spinning or heaving, it hadn't even started to let up. I'd stop the heaving, fall into my blanket sweating and hot, keep in mind my house is about seventy degrees so it's not like it was cold, but seconds after laying down my body temperature would drop significantly and I'd begin feeling so cold that I felt hypothermic, I'd wrap up in the blanket but the cold would persist, then within a minute or two I'd be back up dry heaving for long periods and had extreme sweating again. This lasted for several hours without any change, eventually I noticed my whole body was starting to go numb, when I'd lay down I'd be blacking in and out, my breathing got super shallow, it hurt like hell to breathe anyway but if I had to guess it felt like one quick breath in and out every fifteen to twenty seconds, and I couldn't speed it up with my mind very well, it took a lot of focus just to breathe at a normal slow rate. I couldn't tell if I had enough air or not, it was a super weird feeling. Where I could feel my heart pulsing for hours through every part of my body I felt nothing, the spinning, nausea felt the same, and the cold was feeling worse and worse but I was no longer shaking, my whole body felt like it was on pins and needles except I couldn't even feel my hands and feet. Then I started losing my vision, black came in from the perimeters of my vision and I blacked out. I just remember thinking that that was it, my body couldn't take any more abuse. I woke up on the floor a few hours later, spins mostly gone, barely felt alive and went back to my bed which is where I decided to reach out and write all of this down. I still feel sore, especially in my stomach where that sharp pain was, most of the ear pressure is gone, but I can feel a little lingering and this time in both ears, I can't hold anything down for long, I managed to stomach a sip of water but any more and I throw it up right away. My head is pounding and any movement makes me sick to my stomach but not dizzy. Tinnitus still there but not bad...
I'm basically wondering, has anyone on here ever had such an extreme attack of meniers before? Ear fullness for ten days and all that? I'm wondering if there is maybe something else going on and meniers isn't really the issue after this last experience. I feel hopeless, the fact that there is no cure for this leaves me feeling empty, the thought of dying brings me comfort, and I'm not depressed, I just can't bear the thought of experiencing today all over again, without any way to fight it. I don't have a lot of money and I'm just starting out as a full time contractor and work for myself so I don't have health insurance, I don't really have hope of affording health insurance either so the costs for getting any sort of treatment is astronomical for me. I feel totally hopeless. Those of you that have felt this way, how did you cope? How did you adapt? Because right now I can't see a solution, I need to work, I don't have any way around it. Is there ANYTHING anyone has found to help, because I've done all the doctors have told me I can do and then some, I've tried and continue to try stretching and yoga, I've gotten adjustments from chiropractors, I've tried medicinal marijuana (which helps me more than anything, purely because it's a distraction and eases the stress of having this evil disease.) I've tried decongestants, multiple diuretics, plenty of anti-vert (which doesn't do a damn thing, it might as well be a sugar pill), I feel I've tried everything. Is there anything I'm missing? I would love any advice or words of wisdom anyone could offer me, I'm serious in considering euthanasia for myself but I want it to be my absolute last resort and I don't want to leave any stone unturned before I go through with it. Even with two ok paying jobs I can't afford those medical bills. It doesn't help that no one has even heard of meniers before, no one I know has it or knows anyone who has it, and on my good days I'm mostly fine so most people think I'm faking it. So basically I'm venting years of my frustration and experience with this disease for the first time right here. Anyone who's read this far thank you for listening. I'm debating starting a gofundme but I've never felt comfortable being on the receiving end of charity so it's really harder than it sounds to do so. I only want to raise enough money to go through the tests and possibly a surgery. Does anyone on here know what to expect to have to pay for those things? Any recommendations on health insurance? Ive tried the VA, all I learned there is don't try the VA haha.