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  • At my wits' end, please help me

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    Old 07-23-2008, 11:23 AM   #1
    Bridge17
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    At my wits' end, please help me

    I just came across this board and am hoping someone can please help me. I have been to every doctor I can think of, and no one can get to the bottom of this.
    I am 41, and out of the blue started having dizziness last February. It has not left, and in fact seems worse. I get both sickening, spinning spells that last probably seconds but feel like hours. I also have this feeling like I am bouncing, or rocking. It's hard to explain, but at times when I am sitting or standing, I feel like I am moving back and forth when in fact I am not. Or, when I walk, my body feels like it's made of rubber bands - the floor feels squishy, and I feel "bouncy."
    I have been to two ENTs, one of whom specializes in dizziness. After numerous tests, the consensus is that I have a sensitive inner ear, but that "may or may not be the cause." However, the first ENT feels I have had this sensitive inner ear my entire life, so it seems weird it would just start now. After I really questioned him, he admitted with the normal results on the ENG he doubted that could be the case.
    My family doctor ran the usual blood work, thyroid, etc. and found nothing. I was then sent to a neurologist. He did an MRI (normal). I do have TMJ, and had surgery for it 15 years ago (but they were nowhere near the so called sensitive ear). I also have tension headaches, and have had probably 7 or 8 migraines with auras (that's in the last 20 years, whereas the tension headaches occur quite often). The neurologist said maybe my tension headaches are causing the dizziness (again, why it would flair up now I don't know, and neither did he) and has me so drugged up I don't know which end is up. He has me taking valium for the dizziness, and then is giving me fioricet and fioricet with codeine for the tension headaches. It's not helping the dizziness, and I cannot live in a fog like this.
    I am just tired, tired of not feeling well, tired of worrying when the next spinning sensation will hit, and tired of no one being able to figure this out. I was quite content in my life until this happened. I have had no major upsets, life changes, nothing. Has anyone any ideas, or gone through anything like this? I even tried acupuncture to see if that would help, but unfortunately it did not. Thank you!

     
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    Old 07-23-2008, 12:19 PM   #2
    lookng4answrs
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    Re: At my wits' end, please help me

    Quote:
    Originally Posted by Bridge17 View Post
    I just came across this board and am hoping someone can please help me. I have been to every doctor I can think of, and no one can get to the bottom of this.
    I am 41, and out of the blue started having dizziness last February. It has not left, and in fact seems worse. I get both sickening, spinning spells that last probably seconds but feel like hours. I also have this feeling like I am bouncing, or rocking. It's hard to explain, but at times when I am sitting or standing, I feel like I am moving back and forth when in fact I am not. Or, when I walk, my body feels like it's made of rubber bands - the floor feels squishy, and I feel "bouncy."
    I have been to two ENTs, one of whom specializes in dizziness. After numerous tests, the consensus is that I have a sensitive inner ear, but that "may or may not be the cause." However, the first ENT feels I have had this sensitive inner ear my entire life, so it seems weird it would just start now. After I really questioned him, he admitted with the normal results on the ENG he doubted that could be the case.
    My family doctor ran the usual blood work, thyroid, etc. and found nothing. I was then sent to a neurologist. He did an MRI (normal). I do have TMJ, and had surgery for it 15 years ago (but they were nowhere near the so called sensitive ear). I also have tension headaches, and have had probably 7 or 8 migraines with auras (that's in the last 20 years, whereas the tension headaches occur quite often). The neurologist said maybe my tension headaches are causing the dizziness (again, why it would flair up now I don't know, and neither did he) and has me so drugged up I don't know which end is up. He has me taking valium for the dizziness, and then is giving me fioricet and fioricet with codeine for the tension headaches. It's not helping the dizziness, and I cannot live in a fog like this.
    I am just tired, tired of not feeling well, tired of worrying when the next spinning sensation will hit, and tired of no one being able to figure this out. I was quite content in my life until this happened. I have had no major upsets, life changes, nothing. Has anyone any ideas, or gone through anything like this? I even tried acupuncture to see if that would help, but unfortunately it did not. Thank you!
    Hi Bridge17,

    I have all of the same symptoms as you. The bouncing is a horrible sensation.

    I am just down the road from you, in the nothwest suburbs of Chicago. I would highly recommend you make an appointment with Dr. Hain at the Chicago Dizziness and Hearing Clinic and make the 90 mile drive in to see him. He is the top guru at treating these problems.

    Sounds to my uneducated brain like you have migraine associated vertigo. I had been advised on this forum to read "Heal Your Headache" by David Buccholz, and it was well worth it. I found it at the library and sat down and read it cover to cover (and that was while watching over a 3 year old!). I have cut out the migraine "trigger foods" for about three weeks now and have not seen any results, but it's different for everyone. Dr. Hain has me on Verapamil and Betahistine, because my tests showed higher than normal pressure in my inner ear, and again no help that I can tell. I called them and they are squeezing me in next Thursday since I am dizzy ALL the time now and just can't wait until my scheduled appt late in August. They are a caring staff of people and will help you to get in to see either Dr. Hain or his associate.

    That would be my recommendation. I understand how frustrating it is to feel dizzy all the time. I cry daily out of frustration, sadness, anger and fear. It's a wonder my husband is still with me, and that we all haven't floated away in the flood of tears...

    Keep in touch.

     
    Old 07-23-2008, 06:12 PM   #3
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    Re: At my wits' end, please help me

    could be trigger points in your sternocleidomastoid. try massaging it firmly - if thats it symptoms should go away after a few times.

     
    Old 07-24-2008, 02:42 AM   #4
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    Re: At my wits' end, please help me

    Hi Bridge17
    you say you have been to every type of doctor out there but have you been to a neuro-otologist? They are the only real specialists in inner ear and dizzy issues, ENT may like to think they are but they aren't and I wasted 2 years finding that out. As soon as I got myself to a neuro-otologist and got a proper diagnosis, in my case left side vestibular neuritis and then got seen by a good vestibular therapist for customized vrt, things started to turn around. I have been doing exercises for 16 months and would now say I am more or less symptom-free, just a few eye issues to get over. But for 2 years from Jan 2006 I couldn't walk in a straight line, the floor wobbled and felt like jello and I had to stand still I couldn't, I would be swaying around. It may be that you have a complicating factor like migraine that will benefit from medication but if it is an uncompensated vestibular problem then the less you have to do with meds the better, all the evidence is that just masks the problem but does nothing to help the recovery process.
    good luck

     
    Old 07-24-2008, 06:09 AM   #5
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    Re: At my wits' end, please help me

    I can't thank all of you enough for your assistance, and for sharing your stories. It gives me hope knowing there are others out there with the same problem, who have managed to find some relief. I looked at Dr. Hain's website, and it seems like that would be a trip well worth making.
    Your experiences also confirm what I have been through - all of this medication is not going to help, and truly makes me feel much worse. I am going to try the exercises suggested and see if that helps. I think the worst thing is how doctors keep referring you to one another, and since no one can figure out what it is, they all through up their arms as to how to best handle it.
    I will keep you all posted, and once again, thank you!

    Bridget

     
    Old 07-24-2008, 02:30 PM   #6
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    Cool Re: At my wits' end, please help me

    Hi Bridge17, and all,

    I have been dealing with imbalance/vertigo/dizziness, etc. for years now. Mine also came out of the blue, after a walk on a very cold day (my head/jaws were exposed to super-cold air).

    My symptoms are daily on some level.

    Everyone had differing opinions, depending on their positive/negative experiences with doctors, medications and experience.

    I have been told that chronic tension headaches can cause or add to these types of "head symptoms". As can a myriad of other conditions and illnesses.

    Dizziness can be caused by so many things, and these types of symptoms can mimic so many conditions, that sometimes you can be misdiagnosed or not diagnosed.

    And what works for one person may not work for someone else, even with similar symptoms.

    It's frustrating.

    Regarding medications:

    A few years ago I took a prescribed medication called Amitriptyline. After just a few days on this medication, my head symptoms completely disappeared. However, after a few months, I developed side-effects severe enough for me to have to stop taking it.

    Currently, I take one teaspoon of Children's Liquid Benedryl mixed with two plain 500 mg aspirin (of course, always ask your doctor before taking any kind of med). This does not cure my symptoms, but I am able to function and even enjoy my days.

    And, when my symptoms are really bothering me, I will put cotton in my ears to help my head and body feel more balanced, if that makes sense.

    Dizziness is life impacting if you have it all the time. Like any medical condition that is limiting, it can cause anxiety and depression. It's important that you pay attention to your mental/emotional health during this time. That may mean finding outlets to vent and ways to stay calm and cope during the moments that you are feeling overwhelmed and/or anxious, etc. During the worst of times for me, I have found journaling helps. I also grabbed some counseling when I felt that I just couldn't deal with my woozy head at one point.

    It's great that you have been getting yourself examined. Things like anemia, dehydration, and stress can add to these symptoms for certain types of dizziness.

    Have you noticed an increase or decrease in symptoms at certain times? You may want to start keeping track to see if there is a noticable pattern.

    With things like Migraine Associated Vertigo (MAV), the type of dizziness that accompanies that condition is concluded by a ruling out of other things that could be causing your symptoms.

    I wish you the best.

     
    Old 07-25-2008, 06:05 PM   #7
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    Re: At my wits' end, please help me

    Hi Bridget,

    Sorry to hear about all of this suffering you've been through. It definitely does suck; no question.

    But here's the good news. To me you sound like a very clear case of migrainous vertigo. You may ask, "but I don't get migraines .. have only had a few over the last 20 years". But guess what? Your tension headaches ARE migraine. The latest research is showing this to be very true. And I can personally vouch for this myself. I too am highly susceptible to tension-type headaches. For the most-part I can control them by avoiding migraine trigger foods. Here's what I would do in your shoes:

    1) Go and see Prof Hain to get a sound dx. Throw away all of the garbage the others told you. The sensitive ear dx thing is laughable.

    2) For now, control the food migraine triggers no chocolate, caffeine (or decaf coffee either), alcohol, cheese, nuts, pizza. Stay clear of it all for a few weeks and I bet your tension headaches will vanish and you might even see the dizziness either diminish or go. Keep your sleep patterns very consistent.

    My guess is that Hain wil put you on either Topamax or Effexor (low dose) and you'll be waving goodbye to this very soon.

    Hang in there there's many ways to make this much more manageable or remove it completely to the point where you won't be consumed by it any longer.

    I find valium is a good temporary measure, but use it only sparingly. Give yourself days off inbetween dosing to avoid dependence.

    Best ... Scott

     
    Old 07-26-2008, 07:18 AM   #8
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    Re: At my wits' end, please help me

    I couldnt recommend enough at least trying dome trigger point release. It doesnt require anything but a few minutes of your time. Let me know if anyone is interested and I will explain in more detail.

     
    Old 07-26-2008, 07:32 AM   #9
    lookng4answrs
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    Re: At my wits' end, please help me

    Quote:
    Originally Posted by lucky427 View Post
    I couldnt recommend enough at least trying dome trigger point release. It doesnt require anything but a few minutes of your time. Let me know if anyone is interested and I will explain in more detail.

    Hi Lucky427,

    I did PT and trigger point massage for six months twice weekly for my issues (dizziness, headaches, neck aches, etc). I was told my SCMs were terribly knotted. I did my exercises three times daily religiously. The massage helped in the short term but not the long term. I bought a book on how to do it myself but have not been terribly successful. I am definitely open to any ideas you have for treating the SCMs in particular, as I know that can cause or aggravate dizziness.

    L4A

     
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