I can resonate with your story so much. I am 4 months into this myself. My ENT now says in the grand scheme of this illness 4 months is not that long.....it seems like a lifetime!
When you say at the 4 month mark you made good strides, what do you mean by this?
At this point, I still get set off in a supermarkets and in busy environments like restaurants. Driving is ok, until I stop at a traffic light - I guess all types of motion sets me off. When sitting down I feel like I am slightly swaying which is so uncomfortable. Does this sound familiar to you at the 4 months mark? I can get relief if I am sitting back on a sofa or laying down.
The following user gives a hug of support to khalid567: biteneck (07-10-2012)
I am happy to answer whatever questions you have. It took a LONG time before I didn't have real discomfort when going into a store. It was as if every single product in the store set off the dizziness. I would feel like the shelves were leaning towards me or that the floor was rocking, and looking up was unbearable. I literally depended on the cart to keep upright. I had ALOT of anxiety going into stores- looking back I feel like a big part of it was ANXIETY. I am a mom of three with a husband who has to work- I have no family in my city so I had to make myself get groceries and essentials. I kept trips short- often daily shopping. I live a two minute non-stressful drive from the grocery so traffic wasn't an issue. My vestibilar therapist encouraged me to go too. She would say you need to do things that make you uncomfortable because the brain needs the stimuli to compensate. It was probably 5-6 months before I felt like my old self in a store. Oh and the mall- forget about that. That was horrible. The wide open neverending space was awful. I hated light for the first few months. I wore sunglasses everywhere. It was as if I was having an out of body experience. There are a gamete of physical sensations.
When I say great strides- I am talking about being able to do BASIC things by myself without feeling like I needed someone around. As in I could take care of my children, makes meals, drive short distances (20 minutes around town). The things that *seem* to be my triggers even now - lack of sleep, and stress. Colds never triggered anything. I was nervous for my son to start school because I was scared he would bring home cold after cold and it would trigger a lapse. My 2 year old has a virus right now. She's had a fever for the past two days so I have been up with her alot. I'm feeling slightly unsteady today. Because I just haven't slept. Just to give you a reference- one of the dr's in my ENT group saw me once and told me that he had an astronaut as a patient who had VN. He was never able to go back into space. Not trying to be dramatic but this can be a life-altering illness. It all takes time. I do everything I did before two years later.
Last edited by Amy1007; 07-10-2012 at 10:10 AM.
The Following User Says Thank You to Amy1007 For This Useful Post: biteneck (07-10-2012)
I hope you start feeling better soon. I have similiar problems. At the stores it feels really weird in the head. It's amazing at how much this affects the head and makes me almost feel like I'm having a seizure. Is that similiar to you? I am afraid to drive with it and have a 6month baby girl I need to take care of. I feel so much anxiety about this and fear that I'll never be the same person again. I also tire quickly and have little energy or enthusiasm for things that I used to love doing.
The stores do make me feel quite uneasy. Does it make your head feel really out of it and hard to focus sometimes in the stores? We were in Sams Club, a warehouse store over here in US and I felt better this time than last month or two, but still uncomfortable in some parts. Amy, when did you say you started to notice that you felt a good bit better almost like normal in stores?
Do you sometimes feel that things seem dreamy like? I hate that. It's almost like you are not there. At restaurants, yes! That makes me feel SO Very uncomfortable. It's almost like I am watching myself of spacey and really creepy feeling. Do you get that way, either Khalid or Amy? We were out a couple weeks ago and it felt like I could pass out. Please let me know if you feel any of these. I have experienced once or twice where things look bouncy. That freaks me out and scares me to drive anywhere. That and fear of passing out. Have you ever heard of anyone who has passed out with this? My husband has been feeling dizzy since last December when I had our baby but he never told me about it because he knew I would be concerned.
Amy: If you read this can you also please comment. I hope for all of us to please keep in contact with each other.
Blessings for healing and health!
I experienced all of those sensations. Floaty, dreamy, out of body experience type thing, the feeling the my feet were sinking into the ground. I only drove short distances at first. Whatever I felt comfortable with. I didn't push myself with driving. Like I said my grocery store is a two minute drive do it was a quick trip. Then I started to feel more confident to drive 10 minutes- then 20. You work up to bigger things and before like you'll be back.
You are a true angel for coming back to these boards and giving us the hope and support we all really need. I understand that I probably won't be able to quite return to the activities I did before all this with ease things like playing competitive sport etc. I have accepted that. But at the same time, I am going to give it a damn good go so that I don't end up not doing the things I love.
Hey Biteneck, At restaurants I literally feel like I am on a boat at sea. Moving side to side, up and down. However, after 10/15 minutes it starts to settle as my mind starts to process whats going on - then if something changes for instance different people come into my peripheral view, it starts up again. This is the same in waiting rooms at hospitals and any busy public places - especially train terminals. I hate sitting at the dinner table with lots of people it literally hurts my head!
At supermarkets, I get the marshmallow feet but I try to keep myself walking. I am very lucky in that our supermarket only uses natural lighting and not the terrible fluorescent lights. The stacks of shelves and people still make it a challenging environment.
This really is a 3 steps forward 2 steps back, then it can be 105 steps forwards and 100 steps back process. My symptoms fluctuate up and down all day like a merry go round. I am starting to see what my main triggers are so will try and expose myself more to these as sick as it sounds.
The following 2 users give hugs of support to: khalid567 Amy1007 (07-10-2012), biteneck (07-10-2012)
Thanks Khalid. There is nothing that compares to someone who has gone through it to encourage you. Just like any other illness- unless you have gone through it you just don't know what it truly feels like. Heck not even the experts get it from a firsthand experience. Tomorrow is my son's 7th birthday. As I laid in bed two years ago wondering what the heck this was I also listened to my son's birthday party downstairs going on without me. I vowed to be forever grateful for my health once I recovered- and it this has given me a whole new perspective on appreciation for the little things- like the fact that I can totally enjoy my son's birthday with him tomorrow. This is a bump in the road. I have so much more appreciation for my good health now.
The Following User Says Thank You to Amy1007 For This Useful Post: biteneck (07-14-2012)
Txs a lot for your respons.
It is hard to believe that is will be possible to feel normal again, I hardly know how that feeling was anymore.
This morning I did some shopping, I use to go to stores with healthy food, because food with lots of E numbers makes everything in my head worse. I seem to be very sensitive for things like that.
I was diagnosed by my local doctor with VN in the beginning, because it was a very strong, all over sudden attack he said it was clear that it must be VN. I was forced to lay down for 3 days, the ony thing I could without vomating was lying on my back without moving, so frightening when the whole world around looks like ou are in the fastes rollercoaster...I tried to avoid to take diazepam, but I took it twice, because I wanted to sleep.
After the first few days I was able to sit and walk with help, but for 2 weeks, everyting I looked at was double. I got help from a fysiotherapist, he came to our house to do the Cawson and Cooksey(?) exercises. Everything improved a bit within 3-4 month, but there seems hardly any progress anymore the last month. Last week was a very bad week, but I do not know which is good and which is bad to do. Moving and walking etc sometimes makes me more dizzy. The floating feeling, drunken feeling all the time and the feeling like my head is loosley on my neck is awful. In general I try to think: look at me there I so many things I can do and compared with other people with all kind of diseases I must be greatful. I visisted a neurologist as well and she told me that it is supposed to go away, but it can take a very very long time, also because I have a slowly progressive MS, which bothers me now more than it did before. I used to have a very busy job,but I am unemployed now and the chance that I get another job is minimised, because the unemployment in The Netherlands. So I am better of compared with the women having young children and suffering from such, and for other people hard to understand nasty disease. So I would like to wish everybody all the courage and strenght to carry on and keep hoping for better days to come.
The following user gives a hug of support to Eilleor: biteneck (07-14-2012)