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Me: I'm not too dizzy today, but sometimes I wish I could use my cane just because I'm so exhaused. But that would be silly.
Me: Ah yes, look at those other chronically ill people, using mobility aids to mitigate their fatigue. That is so valid.
Me: can elequantly explain why fatigue is a symptom of my illness, and why having a broken vestibular system can make a body so tired so quickly
Me: Boy I wish I could use my cane today. I'm so tired. Oh well, not dizzy enough. :)))
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At this point in time its been 6 months of dizziness, almost 5 months of tinnitus (either unilateral or very asymmetric), and almost a month of destabilizing daily vertigo (feels like everything is spinning to the left). Now I've made several attempts to talk to people around me about this shit and I feel like they think I'm overreacting. I am not overreacting. I am not excessively anxious about these symptoms, but I do really want to find out why they are happening. So I do research. But I can't really do any sort of diagnostic tests on myself so the research is all speculative. I honestly haven't been able to make any sort of theory about what it is because it could be so many things.
Once we find out what it is we will either be able to fix it or not. If we can, great, and I'll figure out how to live with the consequences of the surgery. But if it's not, that's fine too. I just have to know. I don't want to die of something that could have been prevented if the doctors had just taken the initial symptoms seriously.
This photo was taken on the early hours of the morning when I was in the middle of struggling through a really painful and hard Meniere's disease attack that lasted a good 6 hours! To explain it simply how it feels, imagine that you're seasick for 6 hours, you're feeling sick and have to throw up, you're feeling vertigo and dizzy the whole time, generally unwell and the only thing that helps is to lay flat in a dark room till it passes. I've got medicine I can take for it, but I can't take it that regularly as it interferes with some other medications I'm on for my functional neurological disorder so there is a catch. But I took Stemetil last night to see if it would kick it back, but it didn't. Meniere's attacks comes in clusters so I'm just hoping in not getting any as tough as this one was our while I'm traveling back to England. I'm feeling a bit better now, but it hasn't been the best of birthdays. Mike and I have made the best of it and went to a beautiful place up in the mountains with a lovely stream. I haven't had anything to eat for almost 24 hours so we are going out for dinner tonight to celebrate my birthday, but I'll be eating light. #menieresdisease #menieresdiseaseawareness #chronicillness #functionalneurologicaldisorder #balancedisorder #innerearcondition #menieresdiseasesucks #menieres https://www.instagram.com/p/Bz-_kuDg_LS/?igshid=166pxl3aputgn
I’m fuckin HIGH which is not great for MD but it’s also awesome for my ass that’s currently on a withdrawal from concerta :)
I might have Meniere's Disease according to my ENT doctor. I need a VNG test to see if that's the case.
Does anyone have this condition that can talk to me about it?
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That awkward moment when a normal MRI is one of the worst options.
Fair warning for Baby Driver (sorta but not really a spoiler)
The main character has tinnitus and when he takes the headphones out you can hear the high pitch ring. If you have menieres and or tinnitus (yay me for having both) there is a very fair chance that it will set off ringing or buzzing in your own ears.
Amazing post about Ménière's disease!‪ http://www.chronicadvocate.org/understanding-menieres-going-bilateral/‬
This is a great post that describes living with ménière's, being diagnosed, and the process that ensues. This individual is an amazing writer and I recommend this highly. I have been dealing with the disease for 5 years and between that and genetics it's taken more than half my hearing and it is always making me sick. This person hits it spot on! 5/5 Great read!
