Meniers

I have recently been told I may have Ménière's disease and have had the worst 3 months. I barely leave the house anymore. That or vestibular neuropathy. I feel like I'm moving all the time 

Its terrible isn't it,words don't describe

Do you feel constant moving all the time pat?

Yes slightly moving all the time but with the vertigo everything is going around and around that lasts for 3 or 4 minutes

24/7 dizzy/light headed,headache/migraine every day, tinnitus 24/7 but panicked/anxiety is not all the time they are the worst.

Have you had an audiogram done?  If so what did it show exactly?  I am leaning towards Vestibular Migraine, but I would like more information.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

I have a hearing test next wk,that's it nothing more has been done.

Let me know the results once you have them.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

Yes I will

I am 68 and have been dealing with this stuff since I was a teenager. At that time long ago doctors didn't know what they do now about Meniere's and migraines. They didn't even know anything about vestibular migraines so I can see why they thought Meniere's was a possiblity for my symptoms.  I wish I had known back then to keep a detailed journal of my symptoms, the timing of them, my medications and my respose to them, etc. Over time the patterns that emerge can help with a diagnosis. I sat down a week ago and wrote out a time line to the best of my memory (and times when I did have the severe vertigo atttacks are quite vivid for me still) all my experiences with symptoms, medications, etc. It was very helpful for me to see that. And I think it also helped in diagnosing vestibular migraines instead of Meniere's. I just want to know the truth about what is happening and the best way to overcome it. I know that's what we all want.

Yes Patricia the truth about it all would be a great relief, I have a hearing test wed so just maybe I will be a little further along the line,I won't hold my breath though

I'm hoping for the best for you Pat!

Thank you x

I'm 59 and have been dealing with this for decades.

I Am 25, I have been dealing with this for the last 2 years. Yeah my doctor, said to keep a journal but so far I haven't been because I feel as if my symptoms are the same no matter what the heck I do. Is miserable. I hope they can figure out what's up with you both. I'm scared now I have neritis and I'm not sure what you can even do for that.

Don't give up Melissa. There IS light at the end of the tunnel for you. It looks really awful but you will get through this.

I hope so, I'm really depressed over it. I feel sick over it every single day. I just want to find out what's wrong with me. I don't want to keep having to live my life like this anymore.

I'm scared I won't ever feel good

I think we all understand how you are feeling because we have been there too, but you have to keep on trying by educating yourself, following your doctor's treatment plan even if you don't feel like it. I had a miserable time trying to do the vestibular therapy exercises especially since I couldn't have my anti-dizziness meds, but I decided that I had to do it if I was ever going to get better. I figured if it didn't work then that would be one more piece of the puzzle to give my doctors more understanding of what could be wrong with me. It did work though much to my surprise actually. I wasn't back to normal but I was much improved as my brain learned to reconnect to my balance centers through the exercises. I hated doing some of them, especially the ones with your eyes closed because they made me dizzy.

I have found that if I google medications, symptoms, and the names of possible diagnoses I learn a lot and it helps me at least feel like I'm doing something to help myself which is half the battle. I also pray a lot and ask other people to pray for me specifically about whatever is bothering me at the time. Whenever I have a bad day (day when all the symptoms seem to get worse...and those days happen even when you start to feel even a little better) it's always a temptation to fall back into the fear and worry that I'm never going to get better, but I remember what my vestibular therapist told me....on the bad days, take it easy on yourself. Just knowing that there are and can be bad days helps because then you know good days come back again.

How long did it take before the exercises work? I have been doing them over two weeks and they haven't helped at all. I hate the ones with my eyes closed so much, all I feel like I am doing is moving when my eyes are closed it's terrible! I feel the more I look online the worse my fear becomes about what I am, and it not going away, but I do look all the time. I wish every single day I wake up and I'm okay, but I'm not yet, and it's ruining my life so much. I've begun to give up honestly.

Melissa,

DON'T GIVE UP! There ARE answers out there and you WILL find them. You are young and there are plenty of solutions. You'll find the right doctor and get the help you need. Remember that several of us are praying for you!

Barry

I think that it took about a month before I started to see any improvement doing the exercises. I'm still going to do them as I think they will continue to help. She also told me that one of the best things to do is go outside and take walks for at least 25 minutes. After making sure your pathway is clear ahead focus on a sign or something ahead of you if you can. Try to turn your head to one side as you are walking and then to the other side from time to time. If you can't do that those things focus on the ground about 20 feet ahead of you. It was hard but I did it and I'm still taking walks. and doing much much better. You have to keep fighting Melissa. It will be worth it. Don't give up and keep believing as much as you can that it will get better.  

Thank you so much Barry, I'm trying to stay positive, but it's hard I'm not living life at all while I'm young even, I'm too afraid even to leave the house. I can't work, and I honestly think this will be for a long time, for sure if I have nueritis, then I am stuck for life. Thanks for praying for me, I really appreciate all the help! 

those are the exact exercises I do and I go on the side walk to do them for a short period, I go on walks around my house very close by, the weird thing is when I'm moving I don't feel the swaying as much as I do when I'm sitting down. I just get off balance while standing in one place. I'm so tired of doing these, I just want to feel better and I keep asking myself why did this happen to me. I'll be 30 and my life will pass by

You will get through this. Because you are so young your body will heal much more quickly. I'm praying for you too and asking God to give you answers and to strengthen and heal you. My own faith has been challenged in this terrible experience but I keep a stacknowledge of small cards with scripture verses on them to read and use for praying when i'm at my weakest

Melissa,

My physical therapist has given me an interesting mix of exercises that seem to really work for me, I can share them with them with you if you want. Of course everyone is different. But you can ask your doctor if you think they might work for you.

Barry

Should have been just "stack of small cards." The promises from the Bible give me hope. I don't say this to be religiously pushy.....just to share with you what has helped me in my worst times

I don't feel that young anymore, I feel like my life has been wasted away from this thing that I have had. But I hope I heal soon. Very soon. I feel as if I can't even find a guy who would understand what I am going through, they would just find a girl who doesn't have this. That actually does help me to, motivation makes me smile. I have no real good quotes, what's a good one that helps you? You are not pushy at all! I appreciate you giving your advice to me so many times.

That would honestly be amazing! I will take anything to try. If they have worked for you then I am willing to take a shot at it. My exercises so far have not done much, but I have done a short time. I was curious is this website from the United Kingdom? I didn't know if people from the US used this website too? I some how just found it.

Actually, there are guys out there who have good hearts and would not be put off because of your health issues. The ones  who are like that are the very ones you'd want to be with because you know they are loyal even in the hard times. I'm more than happy to share he verses that have meant so much to me and have helped me through some very dark times. For sake of space I'll just list the scripture verses by name and you can look them up. Proverbs 3:5-8  Romans 15:13 Psalms 119:50 Phillipians 4:6-7 Psalms 55:22 Isaiah 40:31 Isaiah 41:10 Isaiah 41:13 Matthew 7:7-8 Psalms 34:4  Psalms 56:3 James 5:14-15 Proverbs 4:20-22

Psalms 107:19-21 Psalms 30:2 Psalms 103:2-3 Psalms 41:2-3

Jeremiah 17:14 Matthew 9:35 Mark 5:34

That's true but after so long a guy might give up when I can barely hang out, doesn't mean they don't understand but they can find someone with less issues then me. I can't sleep at all right now because of the constant swaying sensation. I will look up those verses, maybe they will be my cure         : ). Thanks so much for being so sweet 

I just read some of them I have about 4 to go left. Thank you so much, they do help, I just wonder why good things happen to good people, maybe I have a lot that I did was bad and that's why this is happening 

There can be consequences to our actions, things we do, but I don't think that your illness is from any kind of payback from bad things you've done. Life just has its difficulties and I can tell you that faith in God and His love and help for me gets me through really bad times. I've learned to trust Him and His promises in the Bible. I sincerely hope you will find that for yourself Melissa.