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Old 03-21-2008, 01:10 PM   #1
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Lauren29 HB User
Unhappy being dizzy for so long is making me feel crazy

My bad days are starting to become every day. In May I will have been dizzy for 3 years. I have tried to keep myself positive and just keep going for almost 3 years now and my brain just can't take it anymore. I haven't worked in 3 years and my new husband does not make enough money to keep us afloat nor do we have health insurance so I can't continue to see doctors. I just don't like being me anymore. I just feel if I could get the dizziness to go away then I could get back my life and get things on track again....but I just can't deal with the movement in my head 24/7 and the brain fog. I hate just feeling like I am walking around in a dream.....feeling just sick all the time and like I am just not there. It is really making me crazy and the only thing I can do is cry about it. I don't even have any clue as to what I have or how I got it. I guess it's inner ear...but doctors said that would go away in a year at the most. I have seen 2 neurologists who both say that it is not migraine. I just hate this. I hate not being able to enjoy life. Sorry to be so negative...I just don't see how everyone else on this board can keep from going crazy from this and keep so upbeat. I just don't see a way out and that scares me.

 
Old 03-21-2008, 01:39 PM   #2
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Re: being dizzy for so long is making me feel crazy

Quote:
Originally Posted by Lauren29 View Post
My bad days are starting to become every day. In May I will have been dizzy for 3 years. I have tried to keep myself positive and just keep going for almost 3 years now and my brain just can't take it anymore. I haven't worked in 3 years and my new husband does not make enough money to keep us afloat nor do we have health insurance so I can't continue to see doctors. I just don't like being me anymore. I just feel if I could get the dizziness to go away then I could get back my life and get things on track again....but I just can't deal with the movement in my head 24/7 and the brain fog. I hate just feeling like I am walking around in a dream.....feeling just sick all the time and like I am just not there. It is really making me crazy and the only thing I can do is cry about it. I don't even have any clue as to what I have or how I got it. I guess it's inner ear...but doctors said that would go away in a year at the most. I have seen 2 neurologists who both say that it is not migraine. I just hate this. I hate not being able to enjoy life. Sorry to be so negative...I just don't see how everyone else on this board can keep from going crazy from this and keep so upbeat. I just don't see a way out and that scares me.
my husband had a stroke2002, and still suffers from a rocking sensation, we have tried everthing, best doctors you name it we have tried, i am sorry for your problem, i know i watch my husband struggle with this almost constantly

 
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Old 03-21-2008, 02:02 PM   #3
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Re: being dizzy for so long is making me feel crazy

Lauren...I totally understand what you are feeling. I too, have symptoms for 19 months 24/7. I was just diagnosed with MAV. I have been improving on the medication.

I went to a neurologist and he did not believe it was migraine.

You need a neurotologist. You need someone who knows about dizzys, inner ear, and migraine. Not to be forward...but where are you located. Let's see if we can hunt up a specialist for you that will help. Also, get an appt....and let them bill ya. For my last appt...we pay 50$ a month. We live on 1 income and cannot pay all at once.

Keep that chin up....

 
Old 03-21-2008, 02:20 PM   #4
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Re: being dizzy for so long is making me feel crazy

Thank you so much Charlotte for the kind words. I am in Dallas, Texas. The last nerologist I saw would not just bill me. He made me pay everything up front...which was a lot.
Are you still feeling the movement in your head after the migraine meds? What symptoms has it made gone away?
I just hate the person I have become and would do absolutely anything to be the me before this happened.

 
Old 03-21-2008, 02:22 PM   #5
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Re: being dizzy for so long is making me feel crazy

Lauren,

I,too have been struggling with the woozy sensation for the last 2 years. My symptoms have also progressed. I get the brain inside my head moving thingy, I feel vibrations on the top of my head and my face area......all sorts of "bizarre" sensations. In the past, I rarely got headaches, but after not being able to find an inner ear issue, my diagnosis had to be MAV. I confirmed with my sister that migrianes run in the family.....so the woozy, with the family history of migraines....and here I am. I have learned that migraines present themselves in many different ways. I have more of the Migraine Syndrome.....or non-headache migraines with all the other neurlogical symptoms, althoug I do get minor headaches from time to time. I have been on migraine preventatives for a couple months and have seen some improvement, but look forward to more. I have also met a good friend "Charlotte" through this trial, and we have been able to compare notes, and that has been very encouraging. Hang in there, we are all in this together.

Pam 3

 
Old 03-21-2008, 02:34 PM   #6
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Re: being dizzy for so long is making me feel crazy

Lauren--

I have only been dizzy for almost four months (VN & migraine issues) but it has been extreme and very debilitating for me. I also have felt very, very sad and, as I said in another post, just "bonkers" from it all...truly not myself at all.

Are you taking any vitamins or other supplements? I didn't before this dizzy hell, but now I take a lot and they are helping my mood...which makes everything better. If you don't already take B-complex vitamins, please consider taking them in addition to a daily vitamin. Also, I just started taking 5htp, which is the precursor to serotonin. This is a very safe, clinically proven supplement that raises mood and calms you/helps with sleep, and I believe it also helps with migraines. It is helping me to feel better. I think there is a lot we can do to help our bodies heal, even if we also may need prescription meds as well.

I also think you should see a specialist. Some work with you on the cost if you are self-pay. I would even say see the very best, don't waste time on the rest, and tell them you can't afford lots of tests. Have you been doing VRTs? Has your dizziness improved over the past three years?

Hang in there! I totally understand where you are coming from, but I'm holding out hope for us...we were fine before this beast, and I know we will master it sooner or later!

--Violet

 
Old 03-22-2008, 06:37 AM   #7
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Re: being dizzy for so long is making me feel crazy

Lauren
you say that you don't know what is wrong with you or how you got it. These two neuros you have seen, what tests did they run and what did they diagnose? I think it is so important to establish as clearly as possible what your problem is, although as you can see from lots of the threads on this board, there is quite of bit of crossover and lots of grey areas. I have been ill for 2 years and 3 months and for the first 2 years I just had vague diagnoses from ENTs but seeing a neuro-otologist in December last year has helped me enormously. They ran the tests, gave me a diagnosis that made sense, and gave me hope for the future. Just talking to someone who understood what I was saying and answered my questions was a huge relief. I know it is easier for us here in the UK as we can get to see the top people for free but there has to be a way.

For me VRTs have been what has moved me forward, but depending on what is wrong with you, that may not be the answer, that's why you have to find out. Yesterday, for the first time in over two years I got round the supermarket without a problem, I was able to scan the shelves and not get dizzy. I have also had a real problem talking to people who are standing quite close to me but yesterday I spoke up close to a couple of assistants and no problem. I drove home really buoyed up, so pleased with myself because only 3 months ago I left the same supermarket in a wheelchair after having become terribly dizzy.

About work, what work do you do? Is there anyway you could do some part-time hours? I work for myself so it is probably easier for me but what I do means I have to fly regularly, travel around a lot and see lots of people. I find the more I fill my mind with stuff other than this nightmare the better it gets and again, the feeling of having achieved something is a boost. In the last six months I have gone from being dizzy every day to being dizzy-free most days, although I do still get sudden blips. When it happens I try and stay on my feet and keep moving, whereas before I would lie down and give in to it.

I have accepted that I am not suddenly going to get better, that I have a vestibular injury that is probably permanent but I am striving to get 100% compensated. You can do it too and one of the things that is going to get you there is a positive attitude.
best wishes

 
Old 03-24-2008, 02:30 PM   #8
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Re: being dizzy for so long is making me feel crazy

Hi Lauren,

I have often thought I would go crazy from this junk too. I think not having any control of it makes one feel like they are just going to break.

I haven't been on the board for weeks but wanted to stop in and see how you were doing on the SSRI? How many weeks has it been now? Are you seeing any relief at all? Keep in mind if you are still feeling sleepy and not seeing any progress with it at all, it just may not be the right one. A friend of mine who had a work-related heartattack about a year ago became very depressed. (this is actually common in heart attack survivors). She was put on Lexapro (I think that is what you are on) and she was extremely tired, the next one she was on gave her insomnia and the third she tried worked wonders for her. So don't give up on it just yet. I'd give it about 8 weeks to see if it helps and then talk to the doctor who prescribed it, they may agree and just switch it for you.

I feel very sad for you about your financial situation and lack of insurance. I often wonder what I would do if I had to work or didn't have any insurance. I'm sure that just puts more strain on your condition. I can honestly tell you, the more I do, the better I get. When I force myself to do things, I feel better. Maybe you could just start off slowly by picking up a part-time job that is easy or where you don't have to deal with a lot of people. Maybe it would take some of the added stress off your chest (or head). Have you tried applying for medical assistance? I'm not sure of the qualifications for it, but it would be worth looking in to. The friend I mentioned above, we reconnected after not speaking much (mainly because of my illness) and we meet up once a month for a couple hours for tea at Starbucks. I feel so emotionally well after connecting with someone other than my husband. I think the lack of human contact after having this problem for so long is hard on one too. A part-time job just may help you more than you realize. It is ok to be afraid. I was afraid just to meet up with her. I worried about my headaches and if the tinnitus would be too much for me to carry on a conversation, but it turned out ok. It turned out actually being a great thing for me mentally. I look forward to meeting with her now and don't think twice about how I will feel.

I also feel that what keeps you so agitated and feeling crazy is the lack of help from the medical profession. I know up until I found my current neurologist, I was so frustrated by the lack of help and knowledge. I feel a little more relaxed knowing I have someone to work with. I am quite surprised they are making you pay up-front too. Lauren, please don't give up on your search to beat this junk. I would not give up on finding a good neurologist. I just can't believe you can not find one in TX. It isn't like you live in the Boonies. I know you have had a full work up with a neuro - oto. I personally would not give up until I found someone to help me. Subs wrote a good post to me a year ago regarding this. I would pursue another neurologist and try and have them bill me. I wouldn't worry about the bills until I found relief from my problems.

On a good note, I can happily say that I have not been dizzy since January (maybe some very mild bits of it here and there, but nothing major). I've had a bad bought of headaches triggered by a virus a couple weeks ago, but I am improving. Lots of people I know had the virus and said it caused bad headaches so I am trying to believe that is all it is is a virus. I would say my biggest problems have been a little heavy head with the inner ear symptoms; bits of fullness and the tinnitus.

Lauren, after I hit that 3 year mark is when I noticed more improvement. I became very discouraged just months before my three year mark. I think half the battle is the mental anguish of this condition. Have faith and keep pushing forward to find the answer. I still believe after reading your posts that it is a central problem and not inner ear. Sounds like an injury similar to mine maybe coupled by a migraine factor (you exhibit some typical migraine symptoms; your floaters and light sensitvity).

Hang in there. Hugs to you.

Gloria

Last edited by gloria2936; 03-24-2008 at 05:19 PM.

 
Old 03-24-2008, 04:40 PM   #9
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Re: being dizzy for so long is making me feel crazy

Gloria..great post.

 
Old 03-24-2008, 06:10 PM   #10
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Re: being dizzy for so long is making me feel crazy

Lauren:

Did you ever try the Headache Specialist my Doctor gave me in your area

Howie

 
Old 03-26-2008, 01:05 PM   #11
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Lauren29 HB User
Re: being dizzy for so long is making me feel crazy

Hi Gloria! So so good to hear from you. I have been wondering how you were doing on your medication, and it sounds like you are doing soooo much better! When you say that you are not dizzy anymore does that mean that you do not feel any movement, swaying or buzzing in your head anymore? If so that's wonderful.....and I want to try whatever it is that you are taking!
I was really counting on the Lexapro doing the trick for me and was more than willing to take it and not be afraid...however I could not take it longer than 2 weeks b/c I was so exhausted, I felt like a zombie and couldn't even do the things that made me feel good anymore like go on walks with my dog....so I had to stop, immeditatley when I stopped I started to get my appitite and energy back. So I figure I need to try something else. I have just not been able to find a good doctor at all and that is the frustrating part....I just feel that if I could get someone to first believe my symptoms and listen..then we could go from there. The few doctors that did work with me said after a while that there was nothing more they could do to help me.
Thank you so much for your post Gloria.....you have to know that it helps me tremendously to hear helpful solutions. I have just been feeling so down and completely at the end of my rope from dealing with the stuff. Especially when you do not have anyone to talk to or understand what you are going through. My husband has heard enough of it and my friends are becoming fewer and fewer b/c I am just so depressed all of the time and find it not even worth it to go out b/c I am feeling so bad.

I guess I am going to try and find a doctor who can bill me.....Howie that doc that you mentioned is in the same office as the other 2 neurologists that I saw and I just know that they think that I am making up these crazy symptoms....I just doubt that they would refer me.....but I will try. thank you for your help.

 
Old 03-26-2008, 04:54 PM   #12
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Re: being dizzy for so long is making me feel crazy

Lauren:

Ask for an appointment and say you were referred by a patient of Dr Newman at St. Lukes Head Ache Institute NYC. I asked him to refer me someone and that was the dr he referred. . It is like a headache fraternity. He specializes in MAV

 
Old 03-28-2008, 10:27 AM   #13
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Question Re: being dizzy for so long is making me feel crazy

Hi Lauren,

I'm sorry the Lexapro didn't help. I wouldn't totally throw in the towel on an SSRI yet. I tried zoloft back in December 2005 (almost a year into the illness) and only hacked it about 3 - 4 days. I had a horrible reaction to it, but nothing really with the fluxotine (prozac). I do believe it is helping me. I think the tinnitus is holding me back the most. It torments me and brings on a lot of other symptoms that I don't believe I would have if I could cope better with the tinnitus.

When I say I am not really dizzy anymore, what I mean is I do not get that drunken feeling. When my dizziness would come on, I would feel like I was drunk or drugged up. It would be hard to think straight and I would feel woozy and kind of surreal. I just get little mild bits of it here and there that only last for seconds and thinking back, I have not had any bad ones since at least January maybe even before that. When this first started, I was dizzy 24/7 with this drunken feeling. (I never had any spinning or floor moving type stuff.) It seems by the second year it was more when I was out in places like stores. The bigger the store, the worse it was. Last year it seemed like for the most part when I was in a store I would be dizzy but not as severe (milder). Now heading into 4 years, I am not noticing anything really dizzy. Every now and then, in a store, my vision seems slightly off or my head feels a little heavier, but nothing major. I hope I am explaining this well enough for you to understand. I don't know if the SSRI has indeed helped the dizziness or if time is really the culprit. I suppose only more time will tell. I still think I need the SSRI to help take the edge off the depression and anxiety.

I still have a heavy head feeling and can feel the buzzing sound my tinnitus makes. Sometimes when I lay very still I can feel sort of like my brain pulsating or shaking inside my head.

The only movement I ever felt was an extrememly mild rocking when I am very still. I'm not sure if it is a symptoms or something I always felt and just notice it more now that I have the problem. This is the least bothersome of my symptoms however. I do recall in my first year, I had a sort of feelng like my head was shaking very fast kind of like a person with parkinson has that shaky disposition about them only you could not physically see it. It is hardly there if it is at all any more.

My headaches are much milder now a days and feel more like a weird sick feeling than pain. I can actually ignore them to a point.

Daily symptoms are the buzzing feeling in my head around my ears with the tinnitus and a heavy head that is worse some days than others. I still have some very mild visual problems but are almost gone or nothing at all like they use to be. I still have a lot of fatigue but in time with the SSRI and exercise, I believe I will beat it. I think the depression and anxiety caused the fatigue. I believe the SSRI or the biofeedback has killed the anxiety. Now I battle depression about 80% of the time. The depression has been the hardest as it is something I never thought I'd deal with in my life; never understood it either until now.

As far as the foggy head. It use to feel like I had cotton shoved in my head or a red brick sitting in the middle of my head. That actually got much better by the end of the first year and pretty much disappeared in the second year. There were a lot of people on this board with that foggy head that had it go away so keep your chin up.

I know how depressing it can be with loosing your social life. How I keep going is try not to think and dwell on the past because the past is over and the future is only ahead. I try not to beat myself up with trying to keep up with others my age but do what I can and enjoy in my condition. My two best friends have become my 7 year old who never cares if I'm acting a little strange because my head is freaking out and my dog who is always happy to see me and just loves the fact that she gets walked quite a bit because that is the highlight of my social outings. I have to say reconnecting with a friend who is much older than me has helped more recently. She understands my situation more than someone my age. She has had health problems herself. It is nice to meet with her once and a while at Starbucks for tea and chat. It gets me out, there are no fluresant lights there and it is just noisy enough to help my tinnitus. It is like a breath of fresh air to communicate with another female. Maybe you have an older neighbor or something you could try talking to occasionally. Just to get you out of the house more. You wouldn't have to try and live up to your friends your age's standards. I know it is tough. I was such a people person before this (Human Resources Manager) and I have developed such a phobia of people from this disorder. What I do know, is little by little of forcing myself to do things pushes it away.

Don't give up Lauren. Try and give another SSRI ago. It is not uncommon to have to try a few to find one that works. I'm not pushing them on you, but after dealing with this so long, I wish I would have done it sooner before my mental condition esculated to where it is now. Now I have this mystery illness and a mental disorder. Is the last neurologist (the one who didn't think it was migraine) the one who prescribed the lexapro? I'd give him a call and see if you can talk to him on the phone about the symptoms you were having and see if he thinks you should try a different one? Just my suggestion.

Feel better,
Gloria

 
Old 03-28-2008, 10:52 AM   #14
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Re: being dizzy for so long is making me feel crazy

Have you tried eliminating foods to see if that helps?

I had constant dizziness and ear infections for several months. Doctors didn't help, even allergists.

Finally (by accident) I found out that milk was causing most of my problem. I now avoid:

1. milk, ice cream, and most dairy
2. fruit juice, especially orange juice
3. anything cold, chilled or icy

I found that taking high doses of Vitamin C (1200 mg? I think) helped a lot. Also visiting a chiropractor who adjusts your ears (yes, really). Also drinking a lot of room-temp water.

You might try taking acidophilus supplements to get your gut balanced. If you've been taking lots of meds you're probably off balance. You might try irrigating your sinuses with mild salt water. This won't cure dizziness but it will help fight infection.

I haven't had dizziness for a long time, except when I fall off the wagon and eat ice cream.

 
Old 03-28-2008, 12:53 PM   #15
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Re: being dizzy for so long is making me feel crazy

Lauren,
I too have the same thing. Brain fog, numb, dull headache, stiff neck achey body... I have had my symptoms for 20 years now, 24/7. BELIEVE ME, I know how you feel. it is very hard!!! One thing I think would be good for you is if you were able to do some sort of exercise 3-4 days a week. It is so hard to get started, but try it. It helps me a bit. My symptoms never go away though, just have levels... Also, get plenty of sleep.

Lastly, have you been tested for Lyme disease? Do you ever remember seeing any sort of rash or were you in the woods outdoors where you could get a tick bite? I tested positive to lyme 10 years after I probably was bitten and now it's very hard if not impossible to get rid of the symptoms.

Believe me, I UNDERSTAND HOW YOU FEEL 100%!!! But, these are the cards we are dealt, and we have 2 choices. Feel sorry for ourselves, or live our lives the best we can under the circumstances. Whenever I start to get desperate and feel sorry for myself, I realize there are other people worse off than us. So, count your blessings and do whatever you can to make yourself better,

Good luck.
David

 
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