After ALL These Yrs. An Inner Ear Problem..

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 20, 2010.

  1. greatgran

    greatgran Member

    Not sure where to post this.. For years I have posted about the weird feelings in my head, off balance, blurry vision etc. Well its all related to an inner ear problem which may come from CFS haven't got that answer yet.

    How I found out, I went to a doctor to see if I had a sinus infection or what the heck was going on with me.. Well, she wasn't sure, sent me that day for sinus x-rays which were normal, did standard labs and referred me to another rheumy.

    When her nurse called me back, (a week later) to give me a report on my labs and my appointment with the rheumy she said all my labs were very good.. I ask her if my labs were so good did she have a clue why I have this crazy head feeling. She said oh join the club and preceded to ask me some questions . Then she said , "honey, you have fluid in your ears" . Told me some things she did , which I am trying and I beginning to feel better even though its only been a couple of days. I think I will see if she will be my doc. One thing was to use a decongestant for about 5 days, take my xanax as prescribed, a humidifier for the bedroom, plenty of rest and fluids. She said I could have had a sinus infection or allergies that caused the inner ear problem . I mentioned that I had, had allergy testing and she said well there is a lot that the test doesn't show. Such as the weather, smoke etc. but she did recommend the food allergy testing. Should I believe her or the doctors? For now will go with her as what she told me to do is not harmful at least I got an answer.

    Now, I have been to the ENT many times, always told it was sinus and was prescribed an antibiotic. Since I have had so many antobiotics with bad reactions don't want to go there unless necessary.

    Oh, so confussed but will follow up with the rheumy. I will mention my ears to him.. But a rheumy for CFS??

  2. greatgran

    greatgran Member

    Darn it, I just read on the CFS Assoc. Board that CFS causes inner ear problems.. or inner ear problems are common in those with CFS/FM.. Can't win.

  3. wendysj

    wendysj New Member

    Hi Greatgran,

    I can fully understand your frustration. I think you need to whatever makes you feel better that will not cause harm in any way. I absolutely agree that you should visit a Rheumy to let him/her run their normal tests (if insurance covers them). You never know what a fresh pair of eyes can find.

    I hope you find some answers soon. Hang in there.
  4. greatgran

    greatgran Member

    Thanks for your reply.. I have seen two rheumys and they weren't very helpful so hoping for some answers or at least a confirmed Dx.. Yes, it is so frustrating..
    God bless,
  5. MsE

    MsE New Member

    Yes, fluid in the ear can cause all kinds of "crazy head" stuff, so I would do whatever the nurse suggested. It certainly can't hurt and it may help. I know milk can cause a lot of sinus trouble and I'm sure other things can, too.

    On the other hand, I also believe that CFIDS patients have to deal with a short-circuit in the nervous system that makes these kinds of things show up. However, I would certainly try the decongestant and any exercises she gave you to eliminate any fluid buildup in your inner ear--such as the Epley maneuver. Good luck, my friend. MsE
  6. TeaBisqit

    TeaBisqit Member

    I had so many ear problems from this disease. The first years of it, I used to get horrific earaches, like someone was taking a hot poker to my ear. I'd have to sleep on a heating pad for it. I used to have to drip warm onion juice into my ear and that actually soothed it. That's an old Amish remedy, I think. I went through hell with the ear. I spent years with chronic earaches. I even had a tooth pulled because I thought it could possibly be causing it. Getting the tooth pulled helped, but I still get the pain once in awhile. I also had fluid in the ears for years. And I had weird boughts of this squeezing feeling in my ears. I really went through alot. I used to have to drip peroxide and alcohol into my ears every single time I took a shower to stop the earaches and fluid build up. After a number of years, the ear problems mostly cleared up. Now, it's more occasional and I get the gland on the right side of my neck pressing on the ear and causing some pain. But for alot of years, I suffered with the ear stuff.
  7. Janalynn

    Janalynn New Member

    Oh goodness - all of these struggles and it may have been fluid all along? Fluid in your ears can be quite troublesome, thats why babies get tubes in their ears. Didn't you also have a low grade fever on and off? That fluid can become infected. The infection clears up but the fluid doesn't go away. (even if it isn't a sinus infection)

    So the Dr. originally wanted you to see the Rheumy before you talked about the fluid in your ears right? Since you weren't told not to continue with the original plan, I'd still go.

    It's a good idea to have the opportunity to have the ears (maybe I shouldn't mention that word LOL) of another Dr. - not about your ears so much, but about everything that is going on with your body. Don't write everything off as your sinus (or fluid) problem, but tell him/her about everything - your body pain etc. I actually like going to a new Dr. I give them the whole list of symptoms, with the most troublesome first, making SURE to emphasize how it impacts my life first and foremost, then see what conclusion they come to. When necessary, I then mention what another Dr. may have said. I don't like to sway their opinion in any way.

    If your "weird head" feeling is really fluid in your ears, I'm so happy for you because that can be taken care of!!!!
    I just can't believe how long and hard you've been suffering.

    We need to get to the bottom of everything that's been going on with you!
    Okay, so now when do you go to the Rheumy? =)

  8. greatgran

    greatgran Member

    It's probably both the CFS nervous system and the fluid from all the sinus problems.. The Epley maneuver is something I have thought about but have an anxiety attack just thinking.. What a chicken I am..

    Thanks for your reply,
  9. greatgran

    greatgran Member

    Thanks Glenp but don't think I have tried this one but will ck out the site.

    Hope you are having a good day.
  10. greatgran

    greatgran Member

    Tea, I know you have had problems with your ears, it is miserable.. Did your doc ever advice you on what to do or did the problem just go away on its own? I am so sorry you have to suffer the way you do with this darn CFS. My prayers are with you.

    Thanks, Jana. Yes its good going to a new doc but the ones around here aren't that good . Even though I have seen 2 Rheumys I am going on Feb. 9th to see a new one. I am going to poor my heart out and hoping for something postive to come out of this..

    God BLess,
  11. TeaBisqit

    TeaBisqit Member

    Mostly, it really ended up getting better on its own. What I've found over the years is that the disease seems to attack different organs and when it is done munching on one organ, it moves on to another one.

    The doctors were idiots as usual. Told me to take allergy meds for it.
  12. munch1958

    munch1958 Member


    It seems like you don't know what direction to go with this disease and it's clear to me that you are suffering a great deal. As others have said, your problems with antibiotics may not be true allergies but could be due to herx type reactions.

    Have you found a LLMD yet? A LLMD is experienced with knowing which reactions are due to allergy and which are symptoms of a herx too.

    Have you tried looking for a naturopath? a holistic doctor? someone who does the live blood screen to see what pathogens you have? A few years ago, I found a great holistic doctor through this board by clicking on the community tab and then the co-cure good doctor list. It's organized by state.

    I really think that you need to find a doctor who can look at all of your symptoms and put together a treatment plan. You need someone who can treat the whole person instead of treating symptoms here and there. They may fix that one symptoms but you'll still have the same underlying problem.

    This will most likely involve some travel on your part. In a perfect world, a great doctor should be right on the next block. I have learned over the past 29 years that just because I am sick with some crummy disease that 99.9% of doctors don't understand I need to go where the experts are treating people just like me. When you find that great doctor you will no longer feel like some freak from another planet. Because that doctor has a zillion patients just like YOU.

    Symptoms of Meniere's disease:

    "Other conditions can produce the same symptoms as Meniere's Disease and, thus, have to be ruled out or excluded in order to develop an accurate diagnosis.

    For instance, infections of the inner ear, including syphilis and Lyme's Disease, may produce episodes of vertigo and hearing loss quite indistinguishable from Meniere's; these symptoms usually occur in both ears. Tumors of the inner ear nerve (the eighth nerve), especially acoustic neuromas, can also produce similar symptoms. These tumors grow slowly and compress the nerve. Thus, the hearing loss doesn't have periods of improvement. Also, the patient usually experiences imbalance rather than vertigo."

    A co-infection of Babesiosis can also cause balance problems. Many people with Babesiosis report a vague sense of imbalance.
  13. munch1958

    munch1958 Member

    Have you gotten a CD-57 test?
  14. greatgran

    greatgran Member

    Thanks so much. Yes I have thought about Lyme so much and looking for a doctor of any kind . I even ordered the Igenex kit for all the testing but can't find one to work with me.
    I am still searching and ready to travel . I am going to ask the Rheumy about lyme and if I get the look then so much for him.
    If you or anyone knows of a doctor I could see to help me please let me know. I live in southwest Va. right on the NC and TN line. Not that far from Duke Medical in Durham, NC but I can't even find a doc there.
    No, I have not gotten a CD-57 test I don't even know what it is.

    God Bless each of you and thanks so much,
    [This Message was Edited on 01/22/2010]
  15. MsE

    MsE New Member

    Hi GG. The Epley maneuver is simple. It's something you can do at home. Check it out on Google. Nothing to it, and it clears the ears and gets rid of dizziness/vertigo if there is a crystalized bit of something or other (which happens to most of us) that has slipped into a place where it is causing equilibrium problems.

    It may be best to have a physical therapist help you with it the first time because of dizziness, but after that you can do it sitting on your bed at home. Check Wikepedia for an explanation.
    [This Message was Edited on 01/22/2010]