I am still waiting to see another autoimmune specialist. I am on a cancellation list waiting for somebody to cancel, but for right now, my appointment is on November 4th. Meanwhile, I am going crazy here. It still seems like my condition is deteriorating as time goes on.

I have spent a lot of time evaluating my symptoms and looking at autoimmune/inner ear disorders trying to determine whether all of my symptoms could be caused by an immune disorder. In one of my other threads, some of you told me that simply because blood tests show that I tested positive for an immune thing didn't mean I had anything active in my system. However, from my symptoms, I have begun to think more and more that these things could be autoimmune related. This weakness, vague sick feelings I have that come and go at different times of the day and vary from week to week seems to follow more of an autoimmune pattern than an inner ear pattern. Sometimes these symptoms show up by themselves without any major presence of vertigo, which has been the case this past week. But I cannot explain how the vertigo that I do have along with the tinnitus and other ear things fits into this.

I have also have disorienting sensations whenever I seem to leave the house for a longer period of time. When I am away and then come home, I sometimes feel disoriented. I know intellectually where I am, but I get these strong instinctive sensations that I don't know where I am or that I am still in a place that I just visited. It's almost like a hallucination except it is more of a distinctive sense and not a true sense. It sounds crazy, and you probably would think that it is anxiety, but I am not so sure. But it may be just that my mind is so fogged up that it can't process all the information.

And I am also having extreme insomnia almost every night. The torture of trying to sleep is unbearable, except that there is nothing I can do about it except try to bear it anyways. Every night my head feels strange and my muscles feel weak. I just go into a trance and go through hell with all of these things bothering me.

Anyways, I guess I really need to get in to see this autoimmune specialist. I just hope that they find something to explain all this and that they can treat it. I definitely can't afford another dead end. My neurotologist finally said that he'd tried everything he knew.

Hey Cory,

Been wondering how things have been for you. I'm sorry you continue to have such a difficult time.

I am not able to provide any suggestions about your symptoms as they relate to a possible autoimmune illness or exposure. As you may recall, I was also exposed to a viral infection - the result of an airborne autoimmune illness. There has been seemingly no correlation to my exposure and my woozy symptoms, but it has been noted as part of my formal medical records when discussing my woozy symptoms. Many years ago, I did locate a research facility a few hours from where I live that study the type of viral illness that I caught so many years ago, and they wanted me to come down to see them to discuss my symptoms, but at the time, travel just seemed impossible and I couldn't deal with it. I have not pursued this avenue.

What did catch my eye in your post was about the horrible time you have sleeping because of feelings your symptoms so much. I deal with that too, and that varies depending on how my symptoms are, and here are some thing that have helped me out:


Taking something to help me feel drowsy (about an hour before bedtime). I take Children's Liquid Benedryl. Usually one teaspoon is enough to relax me to the point where I feel sleepy; this also helps lessen the feelings of motion that I have when lying or sitting still.
Finding a comfortable position to sleep. I am limited because to rest my head in certain positions will cause me to feel like I am falling or about to spin off into space. So I need to sleep with my head elevated. I have found that a pillow put near my head/body on the side that I feel the most symptoms on, helps me feel more grounded. In addition, putting a small towel underneath my neck helps to alleviate the neck pain that I get from holding my head in certain positions. Also (and this sounds strange), I got a big body-pillow, and I lie it ontop of me, with one end underneath my chin. It helps me feel less "motion" when I'm lying down.
I keep the TV on while I'm trying to get settled in bed for the night. The site and sound of the TV takes away from the feelings in my head and body to a degree.


I hope some of this is helpful. Big Hug.

cory: Was it you that had a labyrinthectomy? In which case there will no function in one side, so it will take a while to compensate even with VRT. As I'm sure you know fatigue, disorientation, vertigo and nausea can all be signs of vestibular deficit (which if you had a labyrinthectomy you will have), thats not to say that there isn't somethign else is going on, but you vestibular problems could certainly cause some of your symtpoms, stress and anxiety (which we all suffer - especially when worried about our health) just make things worse, so try and take it easy.

Good Luck!

Wowee,
I can't seem to find any position that seems comfortable. It seems that once I start feeling bad when I'm awake, if I go to bed feeling like that, it doesn't matter what I do or what position I get in... The dizziness sensations are constant. And it isn't just getting to sleep, it's staying there. I always wake up with very bad dizziness. The other night I even had the sensations make their way into my dream! I woke up in the middle of it and it felt like I had been experiencing it for hours in my sleep. One thing that has been odd over the last couple of weeks, which to me seems more like an autoimmune thing is that my symptoms would seem to get better after I wake up and get up for a couple of minutes. Then the symptoms would get worse over the course of the day. Last night I woke up early and felt absolutely horrible. It was preventing me from falling asleep again. But at some point I had to get up and use the restroom, and when I got back and laid down, I felt a lot better and had no problem sleeping.

Benny,
Yes I am the one with the labyrinthectomy. But still, it was about 32 months ago. And in general, my dizziness has been constantly getting worse instead of better.