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Old 04-12-2001, 12:43 PM   #1
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Dizziness from Rochester, NY - It STINKS

Sigh. This is a lot to read, I know! But I’ve found that I have an interest in reading about others who have the same thing I do.

I am a 38 year old, White female (Upstate, NY area). I have suffered from the most bizarre symptoms of dizziness/wooziness since April 1990. I went for a walk on a very cold day, and I remember that my ears were so cold that I ended up covering my ears and jaws with my hands until I got be indoors. That same evening, I noticed a gentle feeling that sometimes certain parts of my body were “swimming and/or oozing” one way, while other parts at the same time were “swimming and/or oozing” the other way. That night when I went to bed I placed pillows all around me because the feeling of motion was unsettling to me – I felt like I was swaying or oozing as I tried to lie down to sleep for the night. With a few days, I began to have feelings that sometimes I felt that I was “too” light and filled with helium. Sometimes I felt that I was just going to pass out, or my heavy head would just clunk on my desk. Nothing hurt, but the feeling was unsettling. I wasn’t too upset at first because I thought it was maybe a cold and that it would clear up. But, within a few months, this feeling intensified to where I felt like I was moving even when I wasn’t (one of the most scariest of this was when I was driving and I either had to stop or turn a corner. After I stopped or turned a corner, it felt like I was still going!). Or, if I swiveled in a chair, after the chair stopped moving, I felt that I was still swiveling. Very scary. Additionally, I wasn’t able to look at anything close up because my eyes just wanted to roll backwards. Writing was difficult because it was too hard to focus or look down. Within the year this escalated to not being able to turn my head in certain directions or look at things up close or lie down flat because I was feeling in constant motion (either woozy, dizzy, swaying…my symptoms of dizziness can vary from feeling tippy to swaying, etc.). I always felt better fidgeting in some way because to sit or lie still was too uncomfortable. I missed a lot of work because of this, and saw a lot of doctors. I cried and worried a lot.

Currently my symptoms are now a constant wooziness, where I feel like I am either going to faint, tip over, lean to the side, or (for lack of a better word) I feel like I am about to go into a convulsion or black out. Or that I have an elevator in my head or body that is bottoming out or bobbing up and down. Sometimes it feels like the inside of my head is rocking back and forth. My symptoms vary. I am usually able to tell when this is going to come on, because it feels like a fog begins to surround my head, my ears ring constantly, and I develop headaches. Sometimes I wake up like this; sometimes I am hit early morning for the rest of the day. Some days my symptoms are mild, where I can do mostly anything with minimal nervousness about it and work around it (I’ve developed new ways of sleeping to cope with not being able to lie flat any more), but some days (like the past month) it’s a struggle and very depressing to do anything even though I want to be active and have fun very much. Doing anything feels like it’s next to impossible because this feeling is so unnerving and I get tired from dealing with it all day.

Along with this, I experience the sensations that I am still moving even when I am not - meaning that if I am swiveling in a chair, and I stop, I still feel like I am going in circles. This was very noticeable at first, and very scary. Especially when I was driving - if I turned a corner and then started to drive straight, I still felt like I was turning. Or if I was driving and needed to stop the car (for a light), I still felt like I was driving forwards, so I would need to stump on the brake so my body would know the car was really stopped. Also, the movement of, say, my purse on my shoulder moving back and forth as I am walking, willl "throw me off" balance. I tend to place my feet very flat and firm on the floor (especially when standing now), and (for example), lean against a counter or walk close to the wall because I feel better having the support or knowing it's close by.

At work I attend a lot of meetings, and since I’ve developed these symptoms, my eyes don’t seem to work properly – if I have to focus my attention on a speaker, within a short amount of time my eyes focus “too sharply” or I get an elevator feeling in my head that feels as if I zoomed in and out too fast. This throws me off and makes me feel as if I am going to tip forward. Very distressing, especially when I’m at work. Work is difficult for me because anything I do during a severe woozy spell is impacted negatively (walking, reading, typing, working with peers).

This wooziness is accompanied by headaches and always a heavy-headed feeling. I can’t concentrate well and I squint my eyes a lot because I feel like I can focus ‘through’ the wooziness even if it’s always lingering. I feel as if I’m living through a foggy-fuzzy environment. If I attempt to sit or stand still, I am very aware of the inside of my head feeling like it’s swaying back and forth. I look more tired, especially when these bouts last for months and years at a time. Since 1990, only the last year (up until four weeks ago) have been better to the point where I have been out dancing. Don’t get me wrong, the dizziness is there, but has been tolerable.

I am naturally an upbeat person, so I am able to get past the bad moments (even when I think “Uh oh”, I can’t), but sometimes even I give in to tears and sadness because this has upset my life so much.

These symptoms have led to depression and panic because it turns everything into a frightful, peaceless situation. I am very outgoing and spunky; having wooziness/dizziness has made me fearful, depressed, angry, scared, and frustrated. Not to mention it has put a damper on my fun loving personality because this feeling is so limiting and scary. I have become somewhat introverted because of this.

During the worst of my dizziness (early on) I had an MRI scan of my head, have been seen by ENTS and neurologists and my eye doctor and an allergist, have had full blood work-ups, have had an EEG, and had those dizzy tests where they put water in your ears to MAKE you spin – if you can put up with the dizziness, the procedure for this specific test isn’t that bad – basically, if you’re already dizzy/woozy, this can’t make you feel any worse, even though it’s pretty scary to go through. I have done counseling and tried a few medications in case my symptoms were brought on purely by anxiety. To-date, nothing seems to have cured me, however I am so very happy that my tests came back showing nothing horrible - I was thinking brain cancer/tumor or mad cow or some kind of brain degeneration or neurological illness.

I do get relief from taking 500 mg plain aspirin with a teaspoon or two or Dimetapp Antihistamine. I got *EXCELLENT* relief by taking an anti-depressant called “Amitriptyline” which is now commonly used for migraine headaches. I was taking 12 mg at bedtime every night. However the side effect for me was a racing heartbeat, and that drove me nuts so I quit that medication. I am thinking of going back on this medication just to give myself a break from feeling so awful.

Sometimes reading about other peoples’ experiences with the same symptoms makes me feel a little better. I hope my dizzy/woozy/whatever this is description has helped. It’s so scary and sad to feel so crappy, especially when it looks like nothing is wrong and no one knows why you’re feeling like this. And I WANT to be wild and crazy!

I’ve had one MD suggest that it was stress related, one MD suggest that it was migraine related, and one MD suggest that it was allergy related. I've also been seen by a chiropractor, and am recently looking into physical therapy (vestibular rehab). I also have been diagnosed in the past with BPV (but those dizzy symptoms are nothing like I have now) as well as labrynthitis. At one time or another, I have been told that I have had everything commonly known to trigger dizziness! But I am not sure that truly anything specific has been proven in my case however. I will tell you however, for me, not feeling well can make these ongoing symptoms worse – especially if I have any kind of stuffy head/sinus irritation. Also, because I am a nervous person to begin with, anxiety seems to make these symptoms more intolerable for me.

I have developed a fear of driving and going outside to new places because of my (dizziness) wooziness; I am in constant fear that either my wooziness will become suddenly worse (so that I may crash my car while driving, or fall over in the Ladies Room at work), or that I will have a need to go home once I am out and about because of it. Enclosed placed now also bother me (like bathroom stalls), as do wide open spaces (like malls or department/grocery stores).

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<p>[This message has been edited by moderator1 (edited 03-05-2002).]

 
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Old 02-18-2002, 12:58 PM   #2
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Re: Dizziness from Rochester, NY - It STINKS

How's everyone feeling?

 
Old 02-18-2002, 04:13 PM   #3
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Re: Dizziness from Rochester, NY - It STINKS

Thank you for your well written account of your symptoms. Everything that you have written I too have experienced. All the tests, all the doctors, all the disappointments--hoping someone can pinpoint and aleviate these symptoms to only find nothing seems to help. I dislike the way it affects my personality. As you stated you can't really relax and be yourself.
Again, my thanks for your dizziness history.

 
Old 02-19-2002, 11:37 AM   #4
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Re: Dizziness from Rochester, NY - It STINKS

I've got the exact same problem. I've been to an ENT who advised me it was anxiety. I also went to an oral surgeon because I suffer from TMJ and thought that was causing the dizziness. He obviously doesn't think so, so he's sending me to a neurologist. And so it begins!
Last night I found some amitriptyline that I had gotten from a doctor when I first started experiencing the dizziness. I chose not to take them at the time, because I didn't feel that the problem was migraine related. After reading your post, I think I will try them to see if they work.

How are you feeling lately?

Crystal

 
Old 02-24-2002, 12:14 PM   #5
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Re: Dizziness from Rochester, NY - It STINKS

Check out the info about Fibromylagia--I am really beginning to think that is what I have--The ENT and
the neurologist can't find anything. So I think I will see a rheumotolgist for a diagnosis. Since the antidepressent med works for you--it is the one used for Fibromylagia--I am wondering if that is the cause of our similiar symptoms--Do you have stiffness and pain in your neck and upper back? Fatigue?
Difficulty reading?

 
Old 02-25-2002, 11:06 AM   #6
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Re: Dizziness from Rochester, NY - It STINKS

Regarding: Fibromylagia, it's a good suggestion, however to my knowledge, Fibromyalgia does not cause the type of wooziness/off balance feeling that I have.

Optimist and Crytalll, I am interested to hear more about BOTH your experiences with wooziness, as I have never heard of anyone having ALL the same sensations that I have written about. Thank you.

 
Old 02-25-2002, 05:32 PM   #7
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Re: Dizziness from Rochester, NY - It STINKS

Have you checked out the TMJ board at all? I'm just learning about it myself, but there seems to be a real connection between dizziness and TMJ disorder. My other symptoms include tinnitus, headaches, and a feeling of pressure in my head. My problems only started about 4 months ago, so I can only imagine what you've been going through all this time.

I can relate to the way you feel about travelling. I'm always afraid to get behind the wheel, but once I start moving I feel better (until I have to stop for traffic!). Elevators are the worst! I feel like I'm bouncing when I get off.

I tried the amitriptyline for a few days, but it made me really drowsy. I don't like taking medication, but I thought it might help with the depression. I think I could deal much better if I just knew what was causing this. I had my eyes checked today; they're fine. I'm having a hearing test later this week, and then I see the ENT again.

I'll keep you posted. Take care.

Crystal
hammer@kwic.com

 
Old 02-26-2002, 05:59 AM   #8
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Re: Dizziness from Rochester, NY - It STINKS

Check out the board on Fibromyalgia. One of the meds used for FMS is Amitriptyline! FMS can cause dizziness, fatigue and ringing in the ears!! I have an appt. with a Rheumatologist to see if I might have FMS. Unfortunately, I my appt is not until May.
The other interesting thing about FMS is that the patient's blood work comes back normal.
Check out Kim's post titled FMS symptoms, diagnosis, treatment and research, good start in a nut shell.
She has a couple of good sites that I found helpful.
I am hoping I don't have FMS--there is no cure--just control of symptoms. But, at this point I am ready for a definitive diagnosis.

 
Old 02-27-2002, 08:10 AM   #9
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Re: Dizziness from Rochester, NY - It STINKS

Hi Crystalll and Optimist:

I know I have asked you both in a previous post on here - How do you both handle your symptoms? I am eager to hear your stories, because you both stated that you have experienced practically ALL the same physical sensations that I have, and I haven't met anyone who can relate 100% yet.

<B>I am very interested to hear more about your experience (starting from the beginning).</B>

My symptoms vary quite a bit, but lately it's the "elevator feeling" in my head and body that I find a bit rough, as well as the feeling of faintness or that I am going to pass out. I get this elevator feeling even when I am sitting. Ack!

Additionally, do you both experience any of these symptoms?:

<UL TYPE=SQUARE>
<LI>When you are doing something, and you stop doing it, do you still feel like you are moving? For example, lifting weights, I still feel like I am lifting them after I am done. Or swiveling in a chair, I still feel like I am swiveling after I have stopped.
<LI>I also have a problem in that if I wear shoes, and then change out of them either into a different pair or take them off, I still feel like I am walking in the previous pair of shoes. Sometimes also, carpets are difficult for me, as I feel like I am walking funny until I get used to that surface. What about that?
<LI>I also experience what feels like a sluggishness to my body where I KNOW I can move my muscles, but I feel like I am going to suddenly not be able to, or that I am slowly losing control of how to move my muscles. What about that?
<LI>I also experience a weird sensation where I know I can move my body, but even though I see myself doing this, I feel like I am NOT doing it. That's the best I can explain it. I don't think it's the same kind of depersonalization people talk about that they have when they are panicking. Everything just feels "different" or funny, this can be doing something like walking, talking, eating, or putting my hand on my head while I am surfing the web to support it. It's like I can't FEEL myself doing this routine things. What about that?
<LI>What about other symptoms that you have that you are not sure if it's related to your wooziness? I have a difficult on occasion in swallowing, and I have a fuuny breathing feeling, like I know I am breathing, but my breathing is "off".
</UL>
I could go on, my symptoms are strange.

What did your doctors say about all of this? Thanks.<p>[This message has been edited by Wowwweee (edited 02-27-2002).]

 
Old 03-03-2002, 11:12 AM   #10
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Re: Dizziness from Rochester, NY - It STINKS

Sorry so late in responding--I was at a sales meeting in Dallas the last 3 days--didn't get home from the airport until 2:00 a.m. due to snow delays at airports--just what I didn't need--stress and no sleep.
I was having alot of problems during the meetings--my usual fatigue, confusion, diffculty walking etc...
After all the tests, I do believe I either have chronic fatigue syndrome or Fibromyagia--basically they are the same type of chronic illness--the both have similar symptoms--FMS has alot of muscle aches and pains. As I have said before, I thought I had ear problems because of stuffy nose and ears, however, these are symptoms that are very prevalent in CFS and FMS. It sounds like you may have this same chronic disease. Look at the sites for CFS and FMS and I think you will see that your symptoms! Have you ever had mono? If so, I did, you have increase of chances of developing CFS and FMS. I am very upset about this--I have always prided myself on being very active and athletic. These problems are hard on my self-esteem. Again, look up CFS and FMS--I think you might find your diagnosis.

 
Old 03-05-2002, 12:01 PM   #11
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Re: Dizziness from Rochester, NY - It STINKS

Hi Optimist,

I hope this finds you doing well!

One thing I have learned from these boards is that it is not possible to have every illness that is mentioned, even if symptoms are similiar. It gets overwhelming wondering if every condition you read about is "the one" in terms of a final diagnosis.

I was asking about your symptoms because you mentioned in an earlier posting that your symptoms mimicked mine so completely. Again, I have never read anyone who said that in relation to my symptoms, so that's what I wanted to talk to you about. But you seemed to want to focus on CFS and Fibromyalgia route instead of just telling me more about your symptoms in depth.

As for CFS or Fibromylagia, these conditions have already been looked into on my side, and again, although I have some symptomotology (as most people would if you looked hard enough), I do not have many of the initial symptoms that would warrant this diagnosis.

Depending on WHO you talk to, your symptoms could be summed up due to allergies, a viral infection, inner ear, or yes, even CFS or Fibromyalgia.

When I saw a specialist who treated for candida, I was told "definitely" that I had candida. When I saw a specialist who treated for migraines, I was told "definitely" that I had Migraine Vertigo. And so on. Again, everyone is trying to help everyone, but no-one really knows for sure.

I see lots of desperate posters on here willing to try anything or accept any diagnosis in the hopes of feelings better. Who can blame them - however, I caution everyone in a caring way that what works for one person, may not work for another, and although our symptoms are similiar, we are different, so before trying new medications self-diagnosing, it may be a good idea to check with a doctor first.

I'm glad to read about so many different viewpoints and suggestions; it does get overwhelming sometimes thinking that "this may be the reason" when there are so many.

I hope you are feeling well today - today's been a woozy day for me. Take care.

 
Old 03-05-2002, 06:30 PM   #12
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Re: Dizziness from Rochester, NY - It STINKS

I agree with everything you said. One can find at least one of their symptoms in all the diseases out there! I too thought I had allergies, inner ear disorder, neurological disease--because I had a symptom that fit any or all of those diseases.
As stated before, I was tested for all the above.
I was tested twice for allergies--I have none.
I had 2 MTI's and 1 CAT Scan--all 3 were normal.
I was tested 3 times by 3 different ENTS for inner ear problems--all tests were normal. I have had an ENG, EEG, EMG--again all were normal. I will be seeing the neurologist next week and will see a Rheumatologist in May. In addition to all these doctors, I have my husband who is a physician--doctor of internal medicine--so I literally have a doctor in the house.
My husband initially thought I had vestibular neuronitis--I believe at one point I did. However, the pain behind my ears and the acute dizziness has subsided. It was I who did some searching and felt I had FMS of CFS--my husband is not convinced--he feels I may have a syndrome that causes a patient to react in an inflammatory way to environmental conditions--allergy season, as an example, does not produce the usual allergic response, but rather an inflammatory response. It has been baffling and he does say that the usual treatment for these type of unexplained symptoms is the use of an antidepressant. Of course,
he is careful to distance himself from my diagnosis and leave the final diagnosis to the specialists that I am seeing. Anyway the symptoms that I have are as follows:
1. dizziness; off balance, lightheadiness
2. difficutly with walking--clumsy
3. fatigue
4. mental confustion
5. poor memory
6. pain in neck and upper back
7. nasal congestion
8. blurred vision at times
As far as coping with this--I just try to get on with my life. I still run 5 miles a day. I work full time.
I have added some extra vitamins to my usual intake.
I have always taken a multi, calcium, Vitamin C, E.
I have added a B-complex, DHEA--for energy, manganese.
I have always been a very driven individual--probably alittle obsessive-compulsive--I do believe it is this type of personality that many times have these stress
induced complaints. I have also learned to be a very good "actress" --"hiding" my symptoms.
I hope this answers some of your questions. I hope that we can unlock the mystery to these strange symptoms.

 
Old 03-05-2002, 09:00 PM   #13
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Re: Dizziness from Rochester, NY - It STINKS

Hi Optimist

It's interesting that you describe yourself as being "driven" and possibly "obsessive-compulsive". I would describe myself the same way. It seems as though many people suffering from these symptoms have type A personalities. I wonder why that is?

If this problem has taught me anything, it's that I need to slow down. If something doesn't get done today because I don't "feel" like it, the world won't end. I still go to the gym, but I also have days when I just want to come home from work, put my pyjamas on and vegetate. And that's exactly what I do! My priorities have really changed over the past several months.

I'm still searching for answers to my problems, but until then I'm going to try and take care of "Me".

Take care.
Crystal

 
Old 03-06-2002, 05:21 AM   #14
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Re: Dizziness from Rochester, NY - It STINKS

Looked with interest at all these posts.
Possible theory:
You acquire a virus - it could be Epstein Barr or something similar. You are not aware you have it but just feel run down and tired. The virus takes hold and infects other parts of your body - including your glands, ear, etc. Then you start with the symtoms - vertigo, dizziness, not feeling generally well, lightheaded, headaches, tiredness, enlarged glands, ear pain, jaw pain, etc.
The questions is: if this is a possible senario and because it's a virus so not treatable with antibiotics, how do you react and treat yourself? Do you wait until the virus leaves your body? Does this lead onto Cronic Fatigue Sydrome which can stay with you for years?
I feel that some people do have the classic systems of Menieres - loss of hearing, ringing in the ear and vertigo. But a lot of people don't have the loss of hearing or ringing in the ear, but a group of other symtoms which I have listed above.
My systems started with bad vertigo attacks - no hearing loss or ringing in the ear. It's now progressed to all the symtoms above. It's been 4 months now and the only real thing the doctors can tell me is that I've had Epstein Barr and they think an infection of the mastoid bone behind my ear (possibly caused by the virus?) Let's face it, if the doctors can't pinpoint it you are left on your own trying to work out what all these symtoms are caused by.
I think the worse thing personally is the fear of having a vertigo attack when out on your own. Mine have all been in bed, but your quality of life is so limited when you just have the threat of this hanging over you.
Anyway these are just my thoughts on the subject - but without any medical back-up it's very difficult.

 
Old 03-06-2002, 07:30 AM   #15
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Re: Dizziness from Rochester, NY - It STINKS

i had mastoditis ih my right mastoid and had a mastoidectomy four weeks ago they found staph in the ear and in the mastoid. now my left ear is acting like the right ear did before i was diagnosed!

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