Hello:

If you don't mind I have some questions for you two. I read your post everyday under my original thread "Does it ever go away". Your positive posts help me get through the day.

I have pretty much the same symptoms that you both listed in your posts.

I know you both said you were doing better. Can you tell me what kind of symptoms you are still experiencing on a regular basis? Also, hbep, you mentioned you are friends with three individuals who had this horrible unfortunate experience. Were their symptoms the same and how long did they have it? How long have they been recovered from it?

Thank you so much for your responses. I feel so sad and so helpless. My husband tries to get me to relax and reassures me that it will go away, but I'm just not so sure. I'm so tired of the headache and the fullness in my ears and the noise. I hate not seeing well. I know I'm better today than I was even 3 months ago and better than I was when this started in January, but I just want to be me again so badly.

Thank you,
Gloria

Hi,

Difficult to say exactly what symptoms I have, a general awareness that I am not completely well - even when doing good -dizziness in shops and busy enviroments, when tired, due to hormonal fluctuations. increases in tinnitus, headaches, and sometimes relapses.

The difference, however, btwn now and the first yr is HUGE. Then I was a wreck - full ears 24/7, ear pain, ear crackling, constant off vision - goldfish bowl effect, constant disequilibrium. And more. In short - flipping awful - at times I just cried a river as I couldn't believe this had taken over my head.

Recovery is different for everyone - in terms of what symptoms people had who recovered - all the same type of stuff I've listed above - most people's symptoms fall in to that ball park. I know someone who got well at 6 months, someone a year, another 18 months. I have been gradually improving with relapses here and there for nearly 3 yrs. The big thing is not so much when someone is completely recovered, but at what point do you start getting your life back - that can be much sooner than recovery. I have been ill 3 yrs but in no way stayed at the same hideous level of illness for that long.

You will get there it just requires the patience of a saint.

best,

Even though I wasn't addressed, thought I'd throw in my 2 cents.

I have dealt with the head monster for almost 6 months. My dizziness has definitely been getting better. I have the contant rocking/swaying version, but I can feel it easing up. There are moments now when I'm like "oh my god, is it gone?" which are beautiful (albeit short lived).

What hasn't gone are the headaches and tension. It's unfortunate b/c while I was resigned to a long term recovery from the dizzies, I wasn't expecting the headaches to become such a factor.

If it weren't for this board and threads like "will it ever go away" I would be in a total panic/depression, thinking something was seriously wrong since it didn't go away in "3-4 weeks", "2-5 months", or whatever misleading time frame is put around this junk.

Hi Gloria:
I am so glad and thankful to say I really don't have a lot of symptoms now that I am noticing and for me the thing started about 1 year ago. I still get migraine once in a great while but I think it is connected to my neck and hormones but thank God the ear stuff is pretty well gone.
I still don't know what caused it as all my testing was inconclusive of any damage. Perhaps it was viral or something and the damage was too slight to show on their tests. I finally stopped trying to figure it out as I found myself going around in circles on different theories and opinions and driving myself nuts, and the Drs. were really no help at all except to empty our pockets (although some people have had a lot of help and it does help give you peace of mind when tests come back clear).
I think the thing that helped me the most (humanly speaking ) was the boards. When you first get hit with it all you start thinking the worst and just knowing there are other people with the same things and LIVING through it all is a great encouragement. Just go day to day (and sometimes moment by moment when you are very anxious) and keep plodding on. It is maddeningly slow to recover from this but I'm here to tell ya it is possible. :D

Thank all of you so much. This has made me so sad. You don't know how much your encouragement and stories help me on a day to day basis.

I really don't know if these boards are helping me or hurting me. I try to stay away from them for awhile, but just can't. I read stuff that upsets me more and then I read something else that makes me feel better (like your posts, especially reading that ALSme is pretty much over it). I'm so tired of thinking about it and trying to figure it out. I read the same information over and over thinking that perhaps I've missed something.

Thanks again.
Gloria

Hi ASLme,

I hope you don't mind me asking you a couple more questions. I kind of feel like your my Superhero and really hope I follow your path.

What kind of test did you have done? I had an MRI, CT Scan and blood work. From reading the boards, I know there is a caloric test and an ENG. I don't really have dizziness, just a strange feeling that comes and goes. I read your symptoms on another posts and have pretty similar symptoms as yours except shaky legs. Also, were your headaches every day? One last question, did it just slowly go away (did the symptoms just start to disappear one by one) or did the symptoms just all go away at the same rate or time frame?

Thank you and I hope you are still 100%.
Gloria

Hi Gloria:
GeeZ! Superhero? Well, I hope I don't disappoint you but thanks for the kind words.
I had the caloric test with the eye tracking and the water in my ears. It made me very sick/dizzy for several hours. Had to come in a few weeks later for the part with goggles to check for nystagmus (Dix Hallpike test) First thing the Dr. (ENT) did was give me an audiological exam. I also had brain MRI with contrast. All were normal. Also my GP did a Thyroid test (also normal.) And eye exam. (Changing my glasses once I got used to them seemed to help a lot)
TBH it was hard at times to distinguish exactly where the pain was (most times it was centered behind my left eye but at times felt like it was in my left ear) and when I had the headache it was excruciating and I felt like I was in another dimension (brain fog) to match it. Not every day but they came quite often (a few a month, sometimes every few days)
I guess I would say everything went at its own rate... not like one at a time.
Last week with the weather front I had another migraine headache, though not as severe, and felt a little off equilibrium-wise, but very mild. (But no anxiety thank God! So I think you can gradually get better with setbacks and it really varies from day to day how your symptoms are.
Hope you have recovery soon and don't get discouraged... :)

Thank you ASLme....I'm a little discouraged I guess from reading so many things that could cause this. I know what you mean about where the pain is. Sometimes I feel like it is deep inside my head but also feel maybe it could be right on top or in the forehead area. I think it always orginates from the ears however. Did you have migraines before this all started with you?

I have an appointment scheduled with a neurotogist. They are suppose to do another hearing test (had 2 already) and the rotary chair test. I don't know if it will tell me anything because it doesn't seem like they are real accurate from what I've read.

Thanks so much for responding to my questions.

I hope your migraines fully disapate soon like the other stuff.

Take care,
Gloria

Hi again:
Yes I had migraine headaches before, usually hormone-triggered. Sometimes I would get visual auras, like a blue floater in one eye. My eyes are all out of whack anyway so this just made it worse. Lots of depth-perception issues.
But the headaches were pretty much on a regular schedule about once a month if you know what I mean.
Take care.