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Caitlin_Amber

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Posts: 3
Reply with quote  #1 
I am not exactly your normal teenager, I was diagnosed with Meningitis (an infection of the mengis surrounding your brain) and encephalitis (an infection of the brain itself) on the 10th of may 2015. I Had A 1.98% Chance Of Survival And Even If I Survived I Would Have Some Sort Of after effect such as brain damage. I was put through a bit of hell and back, being put through test after test and jumping around hospitals for a year. At one point I lost my memory and ability to walk. I also got diagnosed with hyperacusis, a disorder in which my brain is sending the wrong messages to my ears and instead of hearing normally, to put it in short I have the hearing of a dog, flinching at zero decibels. This affected my schooling and any social aspects. After a few months my parents and I managed to find hearing aids suited for my condition and these have helped me through a lot. I lived with a constant headache and lived on pain medication. I started going uphill in around October of 2015 and regained most of my memory stength and had become accustomed to my hearing ability, my health started to level out with only few downs until June of 2016 when I some how managed to get typhoid. I was put on the correct medication but I was not improving and so was referred to a specialist who insisted that it was heart burn and I had made everything up in my head. I continued to get worse and had not eated in two weeks, lost 9kgs and once again my ability to walk. A few days later I was rushed to the trauma unit where they were once again scared I was going to pass away. I was severely dehydrated and malnourished. The doctors told me they could do nothing for me and I had to get flown down to South Africa where I stayed in ICU (as they were afraid I would stop breathing) for 8 days and another week in a private ward. I once again was dragged through hell with every test you cold think of being down, MRI scans, CT scans, EEG scans, Lumber punctures, hearing tests, ultrather sounds, blood test after blood test, and many more. After every test imaginable they diagnosed me with fibromyalgia and conversion disorder all an effect of the meningioencephilitis. I still live with constant headaches and body pain and I still live on medications. But I've started walking again and I'm so grateful that I'm alive. Prayer, faith, hope and most importantly, God saved my life. I don't know where I would be today without him. My family and friends and even those I have yet to know have been such a support to me. I am not the same girl I was two years ago, this whole experience has brought me so far, my life has been completely changed. I still have a long way to go but with the help of others, I know that I will get there. I somehow managged to survive a 1.98% Chance Of Survival And with God's grace I did. The reason I joined this group is because I don't know many people who know anything about my conditions, I can hear past -10 decibels and the doctors haven't seen a case luke mine before, I would like to interact with people who understand hence why i have joined. I Hooe top become familiar with stone of you xx
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Aries

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Posts: 39
Reply with quote  #2 
I really liked your story. I have TMD very bad. Very painful. 2- me it feels like fibromyalgia end Meniere's disease I know that's not what it is but that's what it feels like. I have forward head posture upper and lower back pain vertigo dizziness off balance. Sensitive 2 light. Eye pain eye strain. Daily headaches at the sides of my head. My ears feels like it's Meniere's disease and I can't "pop" my ears really either. My left ear is my worsted. It feels like I have water in it and it sounds strange when I talk muffled when I talk 2, spamic it feels like someone one is taking 2, fingers and pushing against my ear. My left. I need 2 see a good TMD Dr. Or a neuromuscular dentist. I live in Minnesota. I am forced 2, work. I have had this TMD for 5-years-now. I have had 2, be on my staff because I wanted 2 originally got a Kansas City Missouri and see a really good neuromuscular dentist out there his name is Dr Raman. That is 2, far away and I am not waiting around for 2-years- 2 get this treated. All I want 2, is get this treated soon. Because my left ear with the TMD is getting worse and has been progressively since January. I hope that we can talk more. Carrie
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Caitlin_Amber

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Posts: 3
Reply with quote  #3 
Dearest Carrier,
I understand completely what you are going through, my ears cannot pop and it feels to me like everyone and everything has speakers with them and when they move I hear everything. I can hear heart beats and watwe pipes underground. I can hear a care frim miles away and people whispering sounds as if they are shouting. I lI've in Africa, Zimbabwe, Harare, and we don't have the most amazing doctors here hence why I went to South Africa ti get treated and there was an amazing audiologist there who heled me a lot. Have you considered going to an audiologist and ask then to mold you a pair of ear plugs. When this first started I just found silicon ear plugs and used those for 3 months, they were effective enough to allow me to not be in so much pain but it didn't help completely, I found a pair of earplugs that ground engineers use when they are working on the engine and thsee are the best I have tried so far bit I am still hoping to get proper hearing aids for hyperacusis. I hope some of this information helped? It is so exciting for me to hear about someone with similar problems to me. I would love to learn more about you in the near future.
Regards, Caitlin
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Aries

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Posts: 39
Reply with quote  #4 
This is due 2 my TMD
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Caitlin_Amber

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Posts: 3
Reply with quote  #5 
Pardon?
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Aries

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Posts: 39
Reply with quote  #6 
My TMD is bad. My ears won't "pop" fully and my left ear is my worst. My left feels like I have water in there and it sounds weird when I talk. Spamic or muffled almost like I can hear myself. It feels like inflammation is going on and the pressure is always there. Could this be my jaw doing this??? I also, have forward head posture. Upper and lower back pain vertigo dizziness constant muscle spams in my jaw fact hurts. Eyes hurt eye strain. Sensitive 2 light. I would like 2 get this treated soon sense my left ear with my TMD has been getting worse sense Janurary. I could really use support. I live in Minnesota. Thanks Carrie
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