Boslee2008

The two people that are "fine" now both had "shunt" surgery, which Hain says is of little use. Well, I don't know what to say, except neither of them has had an attack in many years since having the surgery. Perhaps they were lucky, but the shunt surgery does seem to work for some. The 3rd person just got the diagnosis, and is doing more conservative measures right now, so she still has symptoms, but she is completely fine between attacks. You just don't fit that profile. So it will be interesting to hear what Hain has to say. With your constantly off-balance feelings, you would think that your problems was LATE STAGE not beginning stage.

Your appointment is Wed?? Well, make sure you bring up all these questions to Hain to see what he has to say. Believe me, you could be in far worse shape I GURANTEE IT!! Also remember, Scott's test was high normal and he doesn't have miniere's. I also spoke to a lady on another board who had a high-normal ECoG result and she doesn't have miniere's. How do we know? she has had the symptoms for 3 years now, which is plenty of time to see the progression of the problem. No attacks, no hearing loss.

You are right. You can easily get headaches from being off balance, or from having to constantly fight your vestibular system or visual overload. I am suffering MASSIVELY from visual overload and I can develop a headache with nausea in a matter of MINUTES so believe me, I know what you are going through. Some days, I wake up, and I exceed my threshold in a matter of 15-20 minutes of waking up, and I literally end up in bed for the entire day. It's no way to live. From your posts, you have been doing FAR more than I have been capable of in the past 6 months, and are in far better condition. Stress/anxiety will only get you where I am. I know because it GOT ME where I am! The best thing you can do is try to get through the next couple of days, write down ALL of your concerns, and make sure Hain answers all of them. This way you can start fresh with a new treatment regimen and be on a more comfortable course. You have all these questions right now, which is ok, but nobody professional to answer them so you are having a lot of anxiety. Hain can probably put a lot of this to rest so write all this out and make sure he answers every last question. You will feel a lot better. Heck, I don't even know what I have yet either. It's not miniere's, but it's either Migraine, or Mal De Debarquement syndrome, or perhaps both. Regardless, i"m very disabled by this condition, and the only thing that helps this is shutting my eyes. I'm considering purposely living as a blind person to avoid the visual overload. How sick is that?? We'll get to the bottom of our troubles and get some improvement, enough to function at least at the 85-90% level which would be a Godsend for me! I'm at about 20% right now on a consistent level. Pretty bad stuff. But it takes time. I've been in this thing 6 months,...which is BABY STUFF compared to the 4-5 years Scott has dealt with this and some people here have done 10+ years. Eventually, the brain has a way of working a lot of this out but it takes time. But you don't have to talk yourself into things you don't have, or talk yourself into making them worse. Hain knows what he is doing. Just make sure that you put down ALL your concerns. If you need help with this, just let me know. I'll help you come up with some questions for him!

Rich