I haven't seen either of you on the boards and I'm hoping it is a good sign. I hope both of you are doing well and just wanted to say I was thinking of you two.

Jill, I still have that burning pain in my ear but wanted to tell you that my dizziness I believe is subsiding although my vision is still goofed up.

Joy - I hope school is going well and you have finally licked this dizzy stuff for the second time.

Take care both of you.
Gloria

Great Gloria,

God knows you deserve to get a break from this crap!

Thanks Tummy. I'm not anywhere near recovered but the past week has been better and I really believe this strange dizzy stuff is going. Now if I could get rid of the headaches and pressure, vision problems and tinnitus, I'd be great. Wow...I just realized my list of symptoms is getting shorter. I just need to get that through my thick head. Take it easy. I know the anixety and depression can make you crazy. I had a really bad spell last week and had to post on this board. As much as I have not believed in my recovery over the months, little by little and I mean little by little it has improved. Hang in there. We are all in this together and are here if you need to chat.

Gloria

Hi Gloria,

Thank you for thinking of me. I still have the burning, pressure and a little bit of the tinnitis. I know you have the tinnitis really bad and I have to say mine has gotten a lot better, so that is a positive. I have some good days but I too feel I am nowhere near 100% yet.

I'm so happy to hear your dizziness is subsiding and let's hope this is a sign that you are getting better! I am trying so hard to have a positive attitude but sometimes it's really hard. I am nearing the two year mark and am scared to death if this isn't over by then I will really feel down. I'm still having thyroid problems too. I have to up my medication everytime I see the Dr. I've gained weight and just feel tired all the time.

My cousin had a terrible dizzy spell the other day and went to the hospital by ambulance. He was told he had Labs. The doctor gave him prednisone and an antibiotic and within three days he was as good as new. I'm happy for him but on the other hand I don't understand how some people can recover that quickly and others have this for so long.

Thank you again for thinking about me and I hope you continue to improve and am praying for your recovery.

Take Care,
Jill

Hi Gloria,
Thanks for the post. I have been really busy the last two weeks or so with exams. I have a one more test next week and then things will slow down for a bit. My ears are getting better. I still have my moments when I feel off, but hopefully this back and forth stuff will go soon. I'm a little over six months right now with this second spell. One of my professors is a certified in vestibular rehab, so I'm going to go talk to her about what kinds of exercises I should know about to help me kick it faster during a relapse. It's nice to be around so many physical therapists who know what this is, and can understand when I don't feel well. I'm really considering going into this feild so I can help people feel better. I think that rehab should be made more available to people and that main stream doctors need to be educated as to the bad effects this has on people's lives even though it might not be life threatening.

I'm glad to hear you are feeling better! It does go slow, and I know that is hard to deal with. But the fact that your list of symptoms is getting shorter, is great! I'm very happy for you!

Take care,
Joy

Hi Ladies,

Sorry, I had a little bit of an episode over the weekend so tried to stay off the boards. It was mostly ear symptoms and that darn tinnitus but I'm better today. Jill- I don't understand this stuff either with why some recover completely, other have lingering effects and some never really get rid of the stuff. I felt a little jealous about your cousin, but I am grateful he is better. At least he knows a little about what you are going through. Jill, I'm really puzzled about your thyroid. I really would have though by now that it would be settled but maybe because you are dealing with the ear stuff it is slowing compensation down with your thyroid. Did your doctors run any test for that autoimmune inner ear disorder. I think it is a certain blood test. That is on the lines of what the type of thyroid problem you have (when your body starts attacking your inner ear like your thyroid is doing. Check it out on the internet and maybe bring it up the next time. Two years is such a long time to live like this and I really hope you wake up fully recovered any day now. I'm sending you good vibes. I know how hard it is to deal with the thyroid problem and then to have this stuff on top of it. I guess I'm fortunate in that my were separate problems at the time and luckily my thyroid was under control very quickley and I never really have any problems from it.

Joy - so glad your doing good. That is cool one of your professer is a certified rehab therapist. Let us know if you get any good advice from him/her. I wonder if she/he could comfirm that your vision goes back to normal?!? That is my biggest obsticle now, I think. You would make an awesome vrt therapist. At least you would totally understand what people go through.

It was nice talking to you too.....I gotta go, my 4 year old is wining that I am on the computer. Talke to you two soon and I'm always thinking of you two and wishing you well.

Gloria

Hi Gloria,

Sorry to hear you had a bad weekend but glad you are feeling better. It's funny you brought up the autoimmune inner ear disorder. I thought about the same thing because my throid problem is autoimmune. But all of my Drs. say the ear and thyroid have nothing to do with each other. I just don't believe them and don't know where to go from here.

I am having a terrible problem thinking that I have something really bad that they are just missing and I have to get the thought out of my head. I have never felt this bad for this long in my entire life and it is really taking a toll on all my relationships and my whole life in general. I feel like I can't even think straight anymore.

I'm sorry to be so negative but just when I think I'm feeling a little better I get hit with it again really bad and all I can think is that I will have to feel this terrible for the rest of my life. I just don't know how I could do that and I feel really selfish saying that because there are so many people out there with a lot worse things than I have. Oh well, again I'm sorry about the negative post but I am at the end of my rope with this crap.
Jill

Jill,

Don't be sorry. I know how hard it is and don't ever second guess yourself and compare yourself with someone else's illness. What we have sucks and it does take away your life even if you are still breathing.

I do think that the autoimmune inner ear disorder can be linked to the type of thyroid disorder you have. My thyroid problem is different because mine was damaged from the change in hormones after I had my baby, but in your case your immune system is attacking your thyroid so why couldn't it be doing the same to your ear? I'm not allowed to post on this board certain information and I would like to tell you more but can't be specific. There is another source with a women who has had autoimmune inner ear disorder for years and could probably answer a lot of your questions and could tell you more about it as well as the type of blood test that pinpoints this problem. I think she had wrote once that she had pushed the doctors to test her and that is what she did have. Do you know the other source? Try doing a search on dizzy disorders. That may help. If your not sure what I mean by this post, let me know.

Are you able to get a second opinion with another neuro oto so that you can bring this up to him?

I'm praying for a good day for you tomorrow!
Gloria

P.S. - Relax about the serious stuff. I don't think it is life threatening since it has gone on for 2 years, it is just life debilitating. The anxiety and depression takes a bigger tool on us, I think.

Gloria,

Thank you for the information and I do think I know what you mean. (Do we share the same name?) I think I came across this once during my many searches trying to find help and answers.

I go to the ear Doctor again on the 20th of this month and the thyroid Dr. on the 27th. I am going to ask them about this again because I really think it is what is going on with me. I get that strange burning feeling down my neck and face and my neck actually turns red with a red line going up to my bad ear. I really think it's coming from inflammation of the thyroid but who knows.

Do you know if this lady ever got any relief and what was done for her? Is there medication for this?

I know you're right about this not being life threatening it's just life altering. Thank you again for your help and understanding. I hope you are doing well.

Jill

Hi Jill,

Yes, you do share the same name. She seems really nice, but I only chatted with her a couple of times so I'm not totally sure about her condition. I know you can talk personally if you go there. Maybe you can ask her if she has a thyroid problem too.

The burning pain I get is only in my ear but I do know that your 7th nerve can become inflamed or something around it and cause pressure on that nerve. If that nerve becomes damaged that is when you end up with bells palsy (affects the face). A friend of my neighbors had an ear infection about 3 weeks before me and ended up with bells palsy from it. The good news is that is something that eventually goes away.

Try talking to Jill. You may get some valuable information.

I have a worst than normal lately kind of a headache today, if that makes sense. My ears are feeling a little full today too. I hope it clears up some this afternoon.

Feel better,
Gloria

Gloria,

I hope your headache feels better soon and I wanted to thank you again for all your help. I will definately talk to my doctors about this again.

Take care
Jill

Hi Jill,

I am going for that test (I forgot what it is called), the one you had to test the fluid level in your ears for meniere's. I go the 25th. I was just wondering if you felt any worse afterwords? I don't like the thought of them sticking something in my ear and am a little concerned the noises they bounce off the cochlear could make matters worse. Am I worrying for nothing? Just curious also if you had an ENG done to see if there is any vestibular damage. I would assume that after I go for this test the next step would be the ENG.

Hope your having an ok day. I'm a little better today. I think some of the other women are right on this board. I am starting to maybe see a pattern of my symptoms getting worse around my monthly episodes. I do think the pressure is much better in my head and ears. I don't think it is totally gone, but I do remember when it was so bad that my head felt like it could explode. The headaches, vision and tinnitus still bother me the most. I think it is what gets my emotions going the most anyway. I am going to ask the neuro oto about that burning pain I/we get. We'll compair his answer to what your doctor said about the inflammed nerves.

Hugs,
Gloria

Hi Gloria,

The test is called ECOG. It didn't bother me at all. The worst part about it was having to sit still while it makes a clicking noise. I felt just fine after the test. I never had an ENG test but I am going to ask him about that. I go to him this week Thursday the 20th.

Please let me know what you find out about that burning pain. I just hate that and it seems like I am more dizzy when it's burning. The only pattern I have noticed with mine is that everyother day cycle where it's really full with lots of pressure one day and the next day I wake up and the pressure is hardly there but it burns. It's just so weird.

The only good thing I can tell you is my tinnitis is just about gone. I have it just a little bit but not near what it was. I don't know why or how this happened but I'm hoping yours does the same. It's terrible living with that noise in your head. It drove me crazy.

I wish you luck with your test and please let me know how it goes for you. I hope you are feeling good today.

Take Care,
Jill

Hi Jill,

Good...hopefully I will be ok after the test. The rotary chair test didn't bother me at all but they didn't stick anything in my ear either.

That is so hopeful your tinnitus is almost gone. That means you are getting better. You wouldn't be getting better if you weren't seeing some improvement. It also gives me hope.

You know, as bad as my pressure and fullness was for about a good 7 months it started going little by little and now I really only have a very mild fullness feeling in my ears and sometimes head. Sometimes my ears don't feel full at all just a little strange like there is still something quite right about them. My dizziness seems to be disapating too. Not totally gone but just very mild. The vision, headaches and tinnitus on the other hand are out of control. Some of the popcorn popping and pulsating feeling is just about gone too. Only once in a while do my ears feel funky and then I get that burning pain. I can go a whole week without it, then I can get it for a whole day or sometimes it is just once in a while throughout the day and when it is at it's worst, it last a whole week. Weird!

I have a horrible headache again today, but I made myself walk 3 miles. Tinnitus is still there but not as bad as the past week especially the past few days. Maybe it didn't bother me as much because I stayed outside a lot today to enjoy one of the last few sunny days before the snow....YUCK!

I wonder in 2 years why your doctor never did that ENG. Mine hasn't suggested it either so I am going to ask about it. This will only be my 2nd visit to the neuro oto so he may just be ruling things out one at a time. The ENT's were usless to me. I heard the ENG can make you worse so I'm not real sure I want one but it would be nice to know if damage shows up. Let me know how your appt. goes. Yours is just right before mine. You should ask him about that blood test for the inner ear autoimmune disorder although I was reading some more about it and it sounds similar to Meniere's and you don't have hearing loss with it so I'm confused about that too.

Thanks for the information on the test and good luck on your appointment.

Gloria