So You Want To Know About Meniere's Disease
Imagine you are trapped on a merry go round, spinning around at one hundred miles per hour. Do you have that image in your head? Good.
That’s basically what life with Meniere’s Disease is like.
You expect when you get a diagnosis that people will understand that you actually are sick and aren’t crazy. But there is a daily struggle with Meniere’s because there’s no cure for it. You’re stuck this way for the rest of your life unless you’re some of the lucky few whose disease burns out after you get older.
Though there are a variety of treatments generally it starts with vestibular therapy. It’s trying to retrain your brain to ignore the dizziness so you can function normally, for me that didn’t work. We progressed onward to try scopolamine patches, which if you are allergic to adhesive like I am I don’t recommend them.
On and on we tried treatments and I felt so alone in it all of it. Yes my family was being supportive of the whole process but all my family members are healthy. And I’m pretty sure a lot of you guys can relate to how I felt. Especially since I’m twenty one now and I was diagnosed at seventeen. Now if you don’t know a lot about Meniere’s Disease it generally occurs in older people to the best of my knowledge. It usually happens when someone is around thirty or forty years old. That fact alone made me feel a little awkward.
But Meniere’s has taught me that no I’m not crazy, that fighting for a diagnosis is hard. It took a lot of time to get to the point of diagnosis. It’s not an easy road that those of us with chronic illness walk. Most of us have to deal with rejection from doctors a lot. And it’s really hard to deal with sometimes.
Often when I go to a new doctor and I tell them I have Meniere’s they generally look at me like I’ve grown a third eye. I give them a copy of my VNG report; it states I have a 40% deficit in the vestibular system of my right ear. At that point it’s like I’ve turned into a mystical science project.
I even amazed my ENT the day he got the VNG report. He’s never encountered someone as young as me having so much vestibular damage. He even had his doubts about me actually being sick.
Meniere’s is usually a life long illness and it can damage a person a lot, not just their ear(s) but, everything. It damages us mentally, physically and emotionally. Mentally sometimes it just makes us really depressed that sometimes it makes us housebound, especially in the winter because of the fear of falling. It damages us physically because this illness slowly takes our hearing from us. Yes there are hearing aids, but sometimes it’s really hard to admit that you need one. And lastly it damages us emotionally because we’re human we get upset.
Having a permanent illness really makes you look at life differently. Sometimes when you’re sick you feel unlovable and guilty. Guilty for missing out on family functions, school and work. Sometimes you might even just feel guilty for being sick and all that guilt really weighs down on a person.
After as long as I’ve been sick it bothers me how fascinated people sound it gets rather annoying. Listen up people without chronic illness; we don’t like being treated like were some sort of odd bug. We are people, and to me sometimes I find it to be insulting. And remember that a lot of us feel really alone in this whole ordeal, treating us differently can be really impolite. I’m pretty sure that almost all of us would appreciate being treated regularly.
I’m having my first ENT visit tomorrow morning. I hope to get a diagnosis. I just this is what it is. It’s debilitating. It’s been going on for 3 weeks now. Everyday, the same thing. Some days are better than others. And I’m 21. But I’m going to grab this thing by the ropes and guide it. This disease will not be who I am. Best of luck to you and your journey love! <3ReplyDelete
I have been living with a variation of Meniere's since 1998. It only took 5 doctors, one of whom called me a liar and another said I had TMJ. I no longer work because I never know when an episode will hit. I get dizzy if I move too quickly, bend over, or stand up. I am affected by barometric pressure changes, temperature changes and altitude changes. I am doing better than I was 22 years ago. The fluid in my ears has decreased, the sharp pains are not as frequent, nor do my episodes last as long. I have started taking ginkgo biloba and that has helped. I also take diuretics, potassium, magnesium, niacin daily; all of which help me have better days. I have been frustrated, angry and depressed. I don't know if an of this helps, but believe me I have been where you are and to some degree, I still am. Good luck and God Bless.ReplyDelete
What where your symptoms of this.? I’ve been going to the doctor for almost two years trying to find out about my ear problems and no luck. �� just keep getting sent home with more medicines..please let me know what you felt before you were diagnosed.ReplyDelete