OOPs--meant to post a 'bit more'! That's how my day is progressing! Made me smile--and I needed that! Disappointed that after getting a hearing aid adjustment, my hearing seems worse! Have about 25 days to see if this new one is going to work. The other one isn't old either--got it last year. Voices on TV and in person are hard to understand. Hear them ok but not clearly. My hearing is bad but not changed in the last 4 mos. So, had hoped that both new aids would be an improvement. I am toying with the idea of 'better aids'. These are not bad--but not doing what I had hoped. And--my tinnitus today is like a steady loud roaring! These aids cost about 1/3 less than 2 of the better known brands. But I have had one of them in the past that worked well. Could just be my level of hearing is not good--that's for sure. And the head pressure, my ent had no answer for. Is happy I'm going to see a Neurologist in April. So, today I have 'cried' often and guess I'm having a 'pity party'! Have done a few things around the house but feeling nauseated too so have to sit back 'alot'! Cried off and on--that let's out the frustration anyway. Thanks for listening!
I know where you are Yanksgirl. Sometimes I think I am cried out, but it still comes. I have headaches every day and voices on televisions, radios, and headphones are just odd sounding. I am trying to get use to it. I never know where my hearing stands from day to day. I am seeing a neurologist and an allergist about my headaches--my ENT-Otologist also had no answers for them. I am so sick of doctor visits, it makes me ill to think of one more. Right now I am crying for you, me, and others who go through this hell and pray there is one day a better place, somewhere. I use to sing every day, and now nothing comes.....I can't make up a bed without getting dizzy.. So much has been taken from us, somehow we have to find some peace and reasons for living. Please help me and I will try to return the favor to find something good to live for.
Sorry Jimmy and Yanksgirl. We all have been there. I had full Meniere's symptoms and they seemed to morph to MAV symptoms. Using MAV meds my symptoms are under control. Meniere's goes into remission by itself sometimes. I am saying there is hope and you will get better. You are not out of options. I have been pretty good for about six months now. I hope you have the same success.
Jimmy--I do feel so badly for you, for me for others here who are really having 'tough times' with this condition. I think because for the most part---we don't 'show' how bad we feel--it's hard for others to really understand. I know I keep sort of 'joking' when I see folks--and say, 'I'm a dizzy dame--and ok from the neck down'! They smile/laugh and say things like--well, you 'look fine' or 'glad you're feeling better', or that's a good attitude. No one truly 'gets it'! And we certainly don't want them to actually 'get this' in order to understand! So--we keep on keeping on! One thing I do though is try to 'keep going'. Even when I feel like I 'just can't'! Advise from others here and my own determination made me see that's important. Get out when you don't feel like it, stay busy at home as much as possible--but also rest when your body demands it! Most don't realize this is a quality of life altering condition. Thankfully, having been on this board for a few years, I know it can/will get better if we 'keep on fighting'. I once had horrible vertigo--no longer since my shunt surgery. But do have the things I've posted here so often--and some days--just have what I all a 'pity party'! Have seen a Psychiatrist to help with depression but mostly to find a drug I could take for it. I was unsuccessful--cannot tolerate any of those I tried--and I tried about 7 or so. Don't see one anymore. I have seen a therapist and she helped me more than anything or anyone. Stopped seeing her because I now can use the tools she gave me when things are bad. Felt no need to 'keep on keeping on' with her unless things got too difficult to handle again. I am not there yet and hopefully won't be again. But if I needed to--I would for sure. I have an Appt. with a Neurologist in the near future. So, hoping he can offer some help for some of what's going on---as it could be MAV. I just don't know. I made a decision to see another audiologist hopefully next week if I can--that I have done some research about--and she seems to have alot of experience and wonderful 'credentials' in helping folks with difficult to treat hearing issues. I'll let you know if things improve that way--that would be such a big help in feeling better, if I could hear better! You all can certainly understand that! So--Jimmy, and others here--let's not 'give up' or 'give in' to this. Keep searching--get as busy as our bodies will let us. Pray often and believe we will get better. That's our goal and for strength to deal with this until that time arrives. Helping each other to 'hang in there' is an important feature of this support forum. Hope we all have a better week ahead! yanksgirl
YanksGirl and others: I walked 3.5 miles today, and almost didn't make it back home because I am driven to get healthy. I have lost 46 pounds in two months because this disease has driven me to get healthy. I think I may be somewhat obsessive right now. Currently on caffeine free and very low salt/no sugar diet. I sometimes refer to it as the "why live?" plan. Just some humor there. At times today, very dizzy and stumbling but no full fledged vertigo. But I have very loud dental drills and rumbling vibrating noise in my head--ringing in the ears, just doesn't cut it as a descriptor. I saw several neighbors who have no idea about this illness. One said, "oh, you get use to that noise in your head" and another said "have you tried olive oil in your ears?" I am still having trouble with crowds and restaurants and some people who talk loudly. For some reason it drives me crazy and I want to run. I will take your advice about forcing myself out of the house. I haven't been anywhere in two months.... By the way, I was put on Zoloft every day, and my excessive crying has ended. It has helped. I can't get over my sister and partner's sadness. I see it in their eyes and it hurts me. I feel so guilty sometimes....
Jimmy, you are doing all the right things. Talking about it, getting it out. You cannot change how you feel. You can try and think about what if your situation was reversed, would you want your sister to feel guilty? I understand that feeling. Also, feeling like you are not what you were. I am not either, but if someone I knew had this, I would be there for them and tell them don't feel guilty about needing help or anything. I am here for you and you feeling guilty will just make you worse. One day at a time and we will continue to try things until you are better. Take care.
I'm not working so I'm trying to eat more nutritiously and get more exercise. When I go biking or walking I try to remember to bring my cell, and meclizine. Jimmy, just for me I don't talk to many people about Meniere's because I to got some well meaning, not applicable advice.
Thanks Marie, some good advice. So many people think I am going through not much and I am the problem because I can't deal with the "ringing." If they only knew. Still having trouble with social interactions, grocery stores, and gatherings. It terrifies me. I think I need to do what Yanksgirl told me to....just get out there and get used to it! My hearing is done to little today and ringing and roar are horrific.
Jimmy--sometimes sitting quietly with a CD playing relaxing music--loud enough to drown out the tinnitus helps. I have even used earplugs to fall asleep that way years ago when this first started. I did get a 'relief' from it after I went thru vertigo (awful) and then had the shunt surgery. It has returned but not to the mind blowing disturbance it once was. I still, on occasion use a relaxing CD to sleep but mostly I just have gotten so I 'get past it' and fall asleep--and of course,during the day--etc. Outside noises help to 'mask it'. It comes and goes in intensity. I do understand. For some--it just 'goes away'. Some use a masking device and some hearing aids have them I've heard. Will ask that tomorrow when I see another audiologist. Will let you know what I find out.
"So many people think I am going through not much and I am the problem because I can't deal with the "ringing." So true and only understood by those suffering. Let's face it, the unaffected world will never really care. It never has, never will. We need to figure out how to pick ourselves up and move forward. For me, it's not the ringing or even the howl that affects my karma. Rather, it was the waking in the middle of the night so dizzy I needed to crawl to the bathroom to puke. It was sleeping on the floor by the toilet while on vacation that deeply affected my attitude. Fortunately, JOH, hydration and low sodium keep all but the tinitus at bay for me, for now. Hang in there and keep researching your triggers, your answer(s). K
I found that the shower helped drown out the tinnitus. Those little water machines worked for me as well.
One Day at a time I was told by Dr. to eat only 800mg of sodium a day When I stick to fruits, vegetables and whole grains I can comply but when I go out to eat I usually have salad and cheat with salad dressing. Hopefully soon I'll start ordering no dressing or find something to order. Can I ask how long you've been dealing with this. It's been 3 yrs for me that I was diagnosed but wonder if I've had it for 20 yrs because that's when the L ear hearing loss began. I've only had the sever vertigo and vomiting a handful of times; thankfully.