Hi. I am hoping someone/anyone! Can relate to me. It all started when I had a 'funny turn' at work back in November 2013. I'll never forget that day as I haven't felt the same since. I thought I was having a panic attack as I just felt wrong. Strange not really here sort of panicky feeling so I went home and went to bed. I woke up to an even worse fuzzy vision panic feeling and had to lie on the floor while calling nhs emergency number as I didn't have a clue what was happening to me. I calmed down eventually and made my first visit to the doctors who said it was a panic attack and prescribed diazepam. At the time I didn't want to take medication as I felt so unusual. I knew something wasn't quite right. I continued feeling extremely anxious panicky and off balance for weeks on end along with continuous tearful visits to the doctors explaining that my vision was disturbed and my eyes were flickering along with pressure inside my ears. Eventually after about 8 weeks of hell I got an appointment with a balance clinic who did testing and confirmed right ear damage and confirmed vestibular neuritis. I am just posting to see if anyone has experienced the same symptoms as me as when I read posts about VN it seems that I can never find the same symptoms as mine which scares me to death ) : here goes: - I can't think straight, avoid people because I feel I can't hold a conversation because I'm sort of panicky and don't feel like the old me, I have moments of real panic that come out of the blue because I just don't feel right, very small things stress me out like even just someone at the door! I know it sounds silly but I'm just a panicked mess having to put on a front to everyone. The worse symptom at the minute which has gone on for a long while is a pressure in my chest/back that doesn't go. I've read somewhere it's muscle strain due to my balance but I just don't know what to believe anymore. My thoughts are just different since I've had this, I don't know where my old personality has gone. It's like I'm hyper aware that I'm not right. Anyone's advice would be much appreciated, I've had this since November 2013 and I am doing gaze stability exercises 5 times a day. I'm having good and bad times but generally feel a nervous wreck. It's so draining. Alcohol doesn't even relax me anymore, it just makes me more lightheaded and panicky. Sorry for such a long mo any post but no one can understand why I have been so weird for months. Please help. Leanne.
Hi Leanne
I am so sorry it has taken so long to diagnose this awful condition the problem is GP"S do not understand enough about this condition and people with this illness need more support. It is common with Vestibular damage to experience all the things you are experiencing, supermarkets bright lights loud noises even being around people in large crowds can really affect this, I cant hold a conversation with someone for long periods.
Try and get as much sleep as you can as this does help with the syptoms, go back to your Gp and ask for further tests balance tests, ear presure tests as dont no if you feel as though you have lots of presure in your head its like wanting to pop a balloon and let the air out.
Also different weather can affect your syptoms if its stormy for instance, Dont give up I no its not easy believe me. Try not to drink alcahol it will only make you feel worse I used to enjoy a drink to relax but since I have had this illness I cant drink anymore.
Please go back to your GP and tell them how bad you are feeling I have found antidepressants have helped with my symptoms and enable me to try and cope better with it. You are not alone with this Leanne. JoJo xx
Hi Joanne. Thank you for your response, it's much appreciated. Do you mind me asking what anti deppresant you are on? I am considering taking the one I have been prescribed but I'm just scared in case it makes me feel strange, I've had enough of feeling strange for too long now! Ha ha! Thanks again for your reply. It's nice to hear positive responses. Makes me feel more determined to ride this out! Leanne ( :
Hi Leanne
Honestly they really do help with the symtoms and to be honest who wouldnt get depressed living with this illness, I am on o Fluoxetine 40mg a day, it may make you feel strange at first but give it at least 2-3 weeks to see any difference.
Also ask foe Betahistine they have also helped me, Hope you sort things out JoJo xx
They have given me 20mg sertraline so I think I'm going to get my holiday out the way and then try them when I get back. I'm seeing a balance consultant privately on Friday so I'm going to discuss the symptoms with him. ENT report says I have significant right peripheral lesion. So it's my right balance organ that's buggered ) : it's a lot better than at the beginning I just feel totally uneasy all the time now. It's like it's not the real me, very strange, and yes I get the head pressure along with ear pressure and my eyes look all squinty and red. It's not a good disorder to have hey! I'm glad you are getting on better with the fluoxetine. I will seriously consider the anti deppresants when I'm Back off holiday . Thanks Joanne. I appreciate messages of people who sound normal like me! Leanne.
Oh you are more than welcome, I have exactly the same but on the left side, It does get easier and you will have your good days and bad days but rest up and sleep, If you are going away by plane use ear plugs, If your travelling by car get some Bucastem from the doctor they stop the sicky feeling have a nice holiday JoJo xx
We must definitely stay in touch then hey. It's nice to speak with someone with the same problem. We are going to Greece so I'm panicking about flying already but I will take earplugs, thanks for the advice. You are so right with good and bad days, it's such an up and down process! You take care too Jo. Again, the advice is greatly appreciated. Kind regards. Leanne ( :
Yes Im here if you need a chat as I do no what this is like funny thing is my sister has also just been diagnosed so it must be in the genes.
Make sure you get the ear plugs for the flight JoJo xx
Morning Jo. Sorry to bother you first thing. I just wondered if I could ask you a couple of questions seeing as it sounds like you have exactly the same as me. How long have you had this for and what age are you (if you don't mind me asking?) I'm 29. Do you feel panicky for no reason? I seem to be constantly in an uneasy state which gets on top of me because it never goes away. I'm not worried about anything so it just feels so scary. When I lie in bed I get feelings like I'm falling (like little rushes really) and pressure and pains in both ears. I'm so sorry to go on, I just wonder if Im going mad sometimes. My chest and back feel tight and even swallowing feels different. Such strange symptoms. I'm not normally a person who would stress about symptoms but there's just no break from these. Sorry to bother you Jo but I just wondered if you had any of this, it might make me feel more human if you have! Thanks a lot. Leanne xx
Ps: I'm sorry to hear your sister has it now. I hope it's not too bad for her. X
Hi Leanne
Soory Ive just checked my computer, I am 48 and Ive had this six years a bit older than you lol, Leanne its not unusual for you to be having these symptoms and it sounds as though you are getting anxiety attacks on top of the vestibular problem you really do need to try and relax as it will ease all of this.
And the anti-depressants will help with all the crazy things that are happening, sometimes when I go to bed I feel as if Im on a boat its horrible, You need to take some kind of medication Leanne to help with the anxiety, I got very anxious when I fisrt got Vestibular problems I worried about other things being wrong with me because I was feeling so ill.
It does get easier but you really do have to get plenty of rest otherwise it is awful. If you think about your day is it worse when you have been rushing around I no I feel dreadfull.
Please ask me anyhing sorry to have got back to you so late JoJo
I also get a very red ear on the bad side and constant ear ache you must try and have some presure tests on your ears as they found out I had eustachian tube dysfunction which made it a lot worse please go back to your doctor and sit and talk to them tell them how low you are make them realise how bad you are feeling, also try and talk to your family and explain how hard it is you need support hope ive helped JoJo
Hi Jo, thanks for your reply, sorry emailing first thing in the morn I feel like I'm stalking you! ( : yes I think all what you have said sounds spot on. Definitely about the anxiety. I have got eustation tube dysfunction too! They never said that would make it worse though so thank you for telling me that. They diagnosed eustation tube dysfunction before the neuritis. I can't believe you have had it that long! That scares me and I really feel for you. I just get so distressed about the psychological feelings that go with this. Give me child birth any day compared to this! I'm going to see that consultant tomorrow so I'm hoping I get some positive help. Thanks so much for your time Jo. It's much appreciated as sometimes I feel very down about how different I feel. Thank you xx
Please Leanne Im here you are not stalking me Please believe me I no how you are feeling with this, what got me was loosing my independence and not being able to do what I did before I got this,Mine has eased as I said I have good and bad times and you learn to be able to cope with it and somehow live with it.
Please let me no how it goes with the consultant, I saw a proffesor Luxon Queens square London she is fantastic but a long waiting list. Please dont stop messaging me ok as you now have someone who really understands how your feeling ok. Do yourself a favour and write down everything you need to ask ok otherwise you will forget as this can play with your memory too. JoJo good luck
Hi Leanne
Also try this site http://www.labyrinthitis.org.uk/links.htm when I was first diagnosed I found this site and it was a godsend, I met and became good friends with another lady and we have stayed friends since give it a go you can find out so much information, But remember Im here ok JoJo
Leanne the site is _____ (link broken) my best friend Jill R is on there please give it a go let me no JoJo
Thank you so so much. I'll let you know how I get on. A good idea to write down the questions. I'm definitely going to do that. You have really helped xxx
Hi Jo. Sorry I didn't reply, I've had trouble with my connection. Thank you for all the support I'm going to look at that website thank you. I got on well with the vrt appointment. I still have to admit though that I can't understand how gaze stability exercises will help these vile symptoms like my shortness of breath and fuzzy head feeling. I'm prepared to try anything though. I'm still panicking about going away because of how I feel but I'm just going to have to try and ignore the symptoms (so hard though) thanks again Jo. Take care xxx
Hi Leanne. I do not have the same thing but it is also odd and doctors could not explain it. Similar, as I became irritated to my wits end with sound....all sound. It was sudden onset, however for a few months I had longed to be in a quiet, removed area like the dessert, where stimulation was vastly reduced and silence reigned there. Well, as I was suddenly beset by bombardment of noises (everyday, ambient noise) feelings of panic were upon me. I got off the couch at 9:30p and dressed and drove to the CVS pharmacy to buy ear plugs. (Has to exchange them until I found a kind that blocked out almost all sound). What a releif. My panic feeling and heart pounding and confusion and nervous/jittery feeling reduced profoundly. I went back home and felt relief; peace replaced the panic I felt. I am a vivacious person and love the activity of my home and daughter and grandson, who live with me...but those things are a problem now. I wear ear plugs much of the day. They dont get it but they immediately adjusted. I had to be sure they understood that they are not a problem...it is me. Something has happened to my peace...with sound, it leaves me.
I am a great lover of the Lord Jesus Christ. He has saved my life in a horrible situation. He rescued me and I speak to him all throughout the day. Interestingly, I have not spoken to Him of this. It was so sudden and took me off guard. I have had severe anxiety in the past due to the deadly situation the Lord pulled me out of, so anxiety in its severe form is no stranger to me. Odd things are no stranger to me either...but this is different.
Leanne, the silence helps me. Maybe it will help you too. Go to CVS and buy a tub of ear plugs that are BRIGHT PINK AND IN A CLEAR PLASTIC TUB. Squeeze them tightly and place them in your ears. They will puff back up and should drown out most noise. Be sure they do because noise must be reduced. Give them a try for a few hours. Just worth a try...right? I have a feeling about you.
This I must also add: Sometimes our Lord Jesus Chist uses odd ways to get our attention. Leanne, He has a voice. He speaks to us. The world is too noisy and distracting and it drowns our Beautiful Lord out. That is what Satan wants. Yes, he is real and he will do anything to interfere with our accepting the Lord as our own and allowing Him to run our lives as they should be run. Satan rules this world only for as long as the Lord allows him to, then, he is off to the Lake of Fire because of the wickedness which he inflicts upon man. We have a choise, the Lord Jesus Christ....or....not. If we choose not, we turn our back on the Lord of all Creation and that will be the worst anxiety for eternity.
I say this because it is more important than a pair of ear plugs, my friend. I hear the pain in your voice. Get ear plugs and get a bible and read the book of JOHN in the new testament first. The first words there tell it all, "In the beginning was the Word and the Word was with God and the Word was God." "And the Word was Light. And the Light shown into the dark (those who do not not know God) and the dark did not know Him." Sad.
I pray that you will know our Lord Jesus Christ and accept him through the reading of His Word. I think He seeks to speak to you...you need silence. Listen and His very soft voice may be heard. That is what I am doing today, as my attack was only a day ago. Maybe you already know the Lord, if so....listen, He wishes to speak to you....that is what I feel. I will listen too, friend. We are bound in love through the most profound Sacrifice ever given, the blood of Christ and through that sacrifice, we are invited to the very throne of God for a wedding feast with our Lord and a life with Him for all of eternity. Let me know how you are, Leanne.
With arms outstretched and hands upraised to the one and only True God, who is Christ Jesus our Saviou and Lord,
Susan (pen name: Shoshannah Batya)
Hi Leanne. I see you got dx and I am so happy. I am going to neurologist this week. When I get feeling wierd the ear plugs always work. I still think you should try them and see because it will cut down on the overstimulation of vestibular nerve. Contact me if you try it, ok? I am curious if you like it. If it helps you decrease symptoms and me...it may help many get through auditory problems. Thanks. Your friend, Shoshannah