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Old 01-12-2006, 11:00 AM   #1
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Lauren29 HB User
does anyone know how this thing leaves?

I have had this ear problem for 9 months now and I don't feel that any of my symptoms have gotten better from the day that this happened to me. I was just wondering how this is supposed to get better? I am very dizzy in stores and driving now......will I wake up one day and suddenly be able to do all of that. I have been taking vasodilators for over a month and doing VRT excercises for about 4 months. I am trying to stay positive....but I just want my life back....something as simple as being able to work and go to the grocery store feeling clear headed and carefree. Will this ever be possible again? Sorry to be down....but this is just depressing. Hope everyone sees the light at the end of the tunnel soon.

 
Old 01-12-2006, 11:34 AM   #2
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Re: does anyone know how this thing leaves?

Hi Lauren,

It was not until the 12th month of this did I really see some improvement. I noticed that when trying to do a little Christmas shopping my vision wasn't that bad and that my dizziness was pretty much gone. I still get a little fuzzy from time to time but not like all year. I still suffer from headache, pressure, funky ear feeling and tinnitus. My headaches and pressure have over all improved but still there. Little by little I just notice things getting better and symptoms disappearing if I look at the whole year I've suffered. However, the biggest improvement I noticed was the the dizziness and vision improvements over the month of December like I said.

From what I read and hear it is not a night and day thing. I wish it was but it seems as if improvements are over a course of time and unfortunately very slow. I do look at how very ill I was last year at this time and even though I still feel crappy, I am much better especially with the dizzies and vision.

To be honest with you, it wasn't until about 9 months that little by little I started pushing myself to do things and believe me I still cried every day up until about December. I have found that if I can keep my sanity it makes my symptoms feel less. I do think you will see improvements too even though hard to believe as I still get caught up in thinking this isn't ever going to end, but I have improved which leads me to believe we can fully recover.

I really know how hard it is, but keep your chin up there is better times ahead for us both.

Take care and remember to read Lizzy's post as she gave us so much hope It always cheers me up when I'm down as a matter of fact, I think I'll take a look at it now.

Best - Gloria

Last edited by gloria2936; 01-12-2006 at 11:36 AM.

 
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Old 01-12-2006, 12:07 PM   #3
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Re: does anyone know how this thing leaves?

Thank you so much Gloria for that reply.....I really needed some words of encouragement. I just feel so trapped in my own body and it's hard when you can't do little things and the whole world continues to live while I feel like my life has been put on hold. I hope that things will begin to improve soon.....if I could just get over the dizziness I think that I would be mostly okay. I too suffer from the tinnitus and head pressure and sometimes you just want a break from it all. I do need to go read Lizzie's post! thank you for reminding me!

 
Old 01-12-2006, 12:26 PM   #4
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WhyAmIDizzy? HB User
Re: does anyone know how this thing leaves?

Lauren,

Keep the faith! Hopefully everything will get better.

With me, my symptoms come and go as they please. I try to avoid all things that 'may' cause my dizzines/cloudiness/haziness like caffeine, stress, alcohol, but I don't know if that helps me. I do know that when my vertigo symptoms are bad that caffeine definitely doesn't make me feel better, it makes it worse. But when I don't have any symptoms (which seem to come in spurts of months at a time) I can drink alcohol, coffee and live my life like I normally would before I started to get these symptoms.

When my symptoms are bad one of the worst things that I can do is go into a store, supermarket, ect and try to shop. Constantly turning my head and focusing on different items on the shelf makes me feel really bad.

I was feeling normal for about 4 months, then all of the sudden woke up one day with the symptoms all over again. I'm on my 2nd week of feeling like this again and it is horrible. I try to describe to people how I'm feeling, but it's virtually impossible for anyone to understand how I feel BESIDES THE PEOPLE ON THESE MESSAGE BOARDS. Thank God for everyone here that can relate to our symptoms and help us through them. It seems like everyone on here is looking for the same thing------------>feeling like they used to!

 
Old 01-12-2006, 12:50 PM   #5
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Re: does anyone know how this thing leaves?

Lauren,

I agree, it would be so nice to feel a normal head and have a break from the pressure, headache and the one that bugs me the most is the tinnitus. However bad they are, let me tell you that I do feel better once the dizziness settle to almost none and my vision started improving. You'll get there too, but you got to do things to help yourself along the way. Get out and get moving, just like Lizzy and so many other say. I really believe it has helped me as well as time. You know that song that goes "Time is on my side"? Well I honestly believe that is the case with this stuff. Give yourself some more time. Like I said, not until the 12th month was I able to get a little grip on this and I still battle it daily but it does get better and one day it will be gone.

Do you see a mental therapist? I never in a million years thought I would and even fought the issue with my family but gave in and I do see one. I don't think there is anything she can say to make me deal with this better; however, she has been my life line in getting the frustration off my chest. She is not judgemental and listens always. I can cry to her and not feel like a fool. If your insurance allows it, I suggest seeing one. I am lucky that I get 20 visits a year and only pay a $20 co-payment. Something else that helps me is that my therapist suffered with an illness for 8 years. She was always sick and achy and it was ruled to be chronic fatigue syndrome. She recovered 100% and feels great today. She also confided to me that 3 years into feeling so ill she started to take an antidepressant and it helped her greatly. Just a thought as it may help you to talk things out with someone one on one.

Keep your chin up; we are in this together and I promise the stores do get easier and I like you tried to avoid things that made me feel worse, but as I did them in December determined to buy gifts for the holidays, I started noticing change.

I need to log off the computer for now as my head is throbbing and my eyes feel a little strained (it is that time of the month so I suppose that is why I feel a little worse today). Talk to you again soon. Feel better.

Oh, one more thing. I too always feel as if my life has been put on hold and everyone else is moving forward and that I can't until I feel good again. Try not to do that so much. My husband makes me go out sometimes when I am at my lowest ( I remember him dragging me out of bed a few times) and you know what, I felt better getting out and moving about. Try not to think of it as being on hold but rather plan your party for when it is over.

Take care - Gloria

Why am I Dizzy - Hope you get another break soon.

Last edited by gloria2936; 01-12-2006 at 12:53 PM.

 
Old 01-12-2006, 12:51 PM   #6
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Re: does anyone know how this thing leaves?

are your symptoms worse at night? I can make it through the day in my house.....but by night I always feel much worse. I want to do something proactive in making these symptoms go away...but it just seems that nothing is working. I understand the frustration in those around you not having any idea of what it feels like to have an inner ear problem...sometimes I really think that people think I am being a baby or making stuff up. It is the hardest thing that I have ever had to deal w/ and probably ever will. I can't wait to get over this b/c I will be the happiest girl on earth just to go to the grocery store! This thing just lasts so long and posts from people saying that they are better is very scarce. Thanks for the positive post though...we all need it!

 
Old 01-12-2006, 01:02 PM   #7
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Re: does anyone know how this thing leaves?

Hi again,

I must have posted my post before your last one right as you were posting so look back to page one.

My symptoms oddly enough use to be much better at nighttime and then as the dizziness and vision got better in December, I definitely noticed my head and pressure worse now at night. I suppose it has to do with my brain being on overload now all day.

I have learned that it doesn't matter what others think as we all experience denile from other and even doctors as it is hard for anyone to really understand how we all feel. I can't even believe how my head has felt all year and honestly don't know how I lived like this for a year.

I thought many times about the scarcity of positive posts and even talked to others about it and what everyone seems to think is that people start to feel better so they start doing more and staying off the computer more and more and more until one day they realize they are fine and they want to get as far away fromt his stuff as possible. Even Lizzy herself said that she begain to do other things and realized one day she was fine. I think this happens a lot. She and Subs (who recovered but still posts on here) said that you do begin to forget about it and that I assume happens with most except for the few that really developed some strong friendships through this and come back to say hey, thanks for the support and I am fine now.

Take care...I hope the evening finds you some comfort. - Gloria

 
Old 01-12-2006, 02:59 PM   #8
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Re: does anyone know how this thing leaves?

Gloria...you are wonderful w/ the advice! I just read Lizzy's post too, and that helps me to feel more positive. I do have a therapist that I just started seeing. At first I really didn't want to go and was angry when I got there b/c i just didn't see how talking about my dreams or my childhood was going to help w/ my dizziness. I have eased into it more now as I see it a way to vent to someone w/out bogging down my friends and family...and she is there to help w/ my anxiety of dealing w/ this and not to "cure" my dizziness. Plus it is really the only time I get out of the house and make myself drive....so that is good. My year mark is in May....so hopefully I will see some positive changes by then. What is your veiw on VRT excercies? I have no idea if they are helping or not.....I don't really have a balance problem, and I dpn't feel too dizziness in the house. What I deal w/ is the feeling of motion in my head...like if I am sitting then I feel like my head is rocking back on and forth....I dunno it's very strange.

Oh...I also see a psychirist later this month....don't excited about being put on drugs as I know they will want to do.

 
Old 01-12-2006, 08:47 PM   #9
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Re: does anyone know how this thing leaves?

Hi Lauren,

I never had any balance issues and never had any spinning or movement type vertigo with mine either. My head just always felt a little strange and yes a slight shakiness to it. Almost as if you look at someone with Parkinsons and they have a shaky disposition about them (Michael J. Fox has this if you look at him closely when he is acting) only I was never actually shaking. I had a lot of this fuzzy/stuffy feeling in my head like there was cotton or a brick shoved in the middle of it. This all has subsided by the 12th month mark with the exception of feeling a little spacey occassionally and of course what I mentioned earlier (pressure, headache, funky ear feeling and the tinnitus).

I use to exercise at a club on a regular basis and when this happened I couldn't go. My head just hurt so bad. I started walking as it started to feel as if after a walk my head would be cleared some (the brainfog would lift some). I walked all year even in 90 degree weather and when it started getting cold out. I live in Pittsburgh, PA. I still walk and am up to 2 - 3 miles a day. I started actual vrt at the end of July when I finally met a specialist who believed me and was willing to help me (thanks to this board I would have never known a neurotogist existed). I do believe the vrt and a small doseage of klonepin (an old anti-seizure medicine that is in the vallium class that has proven to be successful in vestibular disorders) has helped me greatly and has really helped with the dizziness and my vision problems I had all year related to this.

I really believe trying to stay active no matter how you feel is very good vrt. I do know that pushing myself to get out really helped me feel better after I pushed myself out the door. I, like you, was hesitant on going into stores so all year I found outdoor things to do. I walked and found many new parks and playgrounds for my son and I to enjoy. I felt much better outside. It is harder to do that now that it is cold and snowy, but it does really help. I did find myself staying away from people as before I was always confident and friendly. I begain to avoid people and lived my own world, but I do believe the outdoors helped me a lot.

By the way, I too always felt less dizzilike in my house as opposed to going into stores. My headaches and pressure and tinnitus seems to be worse in my home. I can't figure that one out.

Just remember as long as it seems to have been for you, you probably still have awhile to go so the best thing to do is realize that. I can promise you that it does get better, but like I said not until the 12th month for me and I am still dealing with some residule stuff but Lizzy gives me hope that it will all go away even the dreaded tinnitus.

I'm glad you decided to see a therapist. I felt the same about it as you did, but it is nice to spill the beans with someone who doesn't judge you and actually listen. I think that is good vrt for this illness too as I believe it is important to keep anixety and depression at a controllable level.

Take care and I hope you're feeling better tomorrow. - Gloria

Last edited by gloria2936; 01-12-2006 at 08:52 PM.

 
Old 01-13-2006, 09:46 AM   #10
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Re: does anyone know how this thing leaves?

Oh my gosh! Everything that you are describing is exactly how I feel....I never had the true spinning and vertigo...just woke up one day and my head felt really funny.....just as you decribed MJF is how I describe how I feel....like my head is shaking, when it is not actually. I walk about 20-30 min a day...and it is about the only thing that makes me feel better. I have avoided all activites w/ friends.....as I just feel like a weirdo when I used to be extremely social. My brother's wedding is Memorial day in Durango, Co. which i am in......so I am hoping to feel better enough to be able to do all that. It is also the year mark of my illness. fingers crossed...I am trying to stay positive!

 
Old 01-13-2006, 08:26 PM   #11
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Re: does anyone know how this thing leaves?

Hi Lauren

At a year mark, I can do so much more than last year at this time. I'll cross my finger for you for your brother's wedding. My best friend that I grew up with got engaged this past year and asked me all summer to be in her wedding. After all summer and not much improvement, I had to tell her I couldn't do it. It made me feel so sad and still does as she moves forward to her wedding day. At this point, I probably feel I could go through with it. You will be much better by then.

Curious if yours started from a virus or ear infection? Apparently, we must have the same thing going on.

Hope you had a better day today. Mine was better than yesterday as the pressure and headache wasn't as bad. I do remember back to month 9 and was still quite ill so don't give up. You will feel better just as I believe I will one day be myself. Tinnitus scares me a little, but I know I got to be strong to fight this.

Take care - Gloria

Last edited by gloria2936; 01-13-2006 at 08:27 PM.

 
Old 01-13-2006, 08:42 PM   #12
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studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User
Re: does anyone know how this thing leaves?

Hi Lauren,

>>I was just wondering how this is supposed to get better?

The jury is still out on this one for me. But the best I can tell you from my point of view thus far is to become one hell of a patient person. It can take many, many months to see serious progress with this stuff. It is paramount to keep your head screwed on straight so to speak and not let anxiety run wild (this is a very difficult lesson to learn - it was for me anyway). I'm now at 29 months of this and have had extended periods of feeling near normal (I'd say 97%) but for me, unfortuantely, I am susceptible to relapses or decompensation as it is called where I am thrown back into chaos for 4-6 weeks. I'm presently in one now actually (third major decomp event) and peaking at the moment but know it will eventually burn out again. From what I gather as time moves on the liklihood of such relapses becomes much less and perhaps eventually goes to zero. It has for many on this board who no longer hang around much.

So hang in there and stay as calm as you can about this. Fretting about it (as I have learned) only serves to throw petrol on the fire. I'd look into getting some support from a counsellor the minute you feel you need help and are not coping.

Hang in there....best,

Scott

 
Old 01-14-2006, 06:18 AM   #13
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Smile Re: does anyone know how this thing leaves?

Hi Guys,

Just read your posts and wanted to say hello again and how please I am that my posts can help you. I used to read through Subs's posts a lot to keep me in a positive frame of mind as it's so easy to get downhearted and worry that you will never feel better. Its cruel that this thing takes its time going away but it does, eventually and your life WILL be as it was before and you will appreciate it so much more.

My advice again to you would be stay calm, think positively and keep active - this thing aint gonna kill you, its nasty but not life-threatening. I had to PUSH myself to do things even though I knew I would feel dizzy. I dreaded going shopping because I felt dreadful but now, I dont give it a second thought.

I didnt really start to feel better until 12mths plus and I would say completely better by 2yrs - so push on ladies (and gents!) - you will be the ones writing positive posts soon, helping someone else.

Lizzy xx

PS: Just wanted to add, I've just been on a work related training course, one of my colleagues came down with Labs/VN whilst we were there. He looked DREADFUL - it took me back to when I felt exactly the same and made me realise how much I appreciate being well now.

Take Care x

 
Old 01-14-2006, 03:34 PM   #14
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Re: does anyone know how this thing leaves?

Hi Lizzy,

Glad you are feeling so well. Good to hear. Can I ask if you've ever had any major relapses since it first hit? Anything that made you think, "My God, it's another attack"?

I'm not feeling quite that bad but I'm at 29 months and have been thrown a really nasty curve ball again.

Thanks for your comments....Scott

 
Old 01-14-2006, 06:24 PM   #15
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Re: does anyone know how this thing leaves?

Hi Everyone,
I have been checking in and reading this Board since April 2003 when I was hit with VN while in Florida for the winter. (Scott may remember me). I haven't been actively participating for the past year because I delcared myself "cured". I experienced tons of anxiety with the VN and eventually started taking Ativan 1mg per day. It was a Godsend and helped tremendously with other anxiety issues I was facing.....I decided I didn't need to continue taking it and started tapering off in Feb. I am now only taking 0.25mg at night. The taper has gone relatively well but now that I am down to 0.25mg at night I have started experiencing a lot of dizziness again, much like the sensations I had initially when all this started. Since I have been tapering so slowly I find it hard to believe that everything I am feeling is related to withdrawal. So, I am wondering if I am having a "decomp' event as well? I never realized that VN can recurr..This has been going on now for about 2 weeks. I am not having any difficulty with the PC screen, shopping or walking which makes me wonder..... I am reading a HB related to benzodiazapine withdrawal and the symptoms of WD are identical to those of Labs, VN and MAV....How do I determine what this is? The dizziness isn't 24/7 and isn't related to any head movement. I am getting some very weird feelings in and about my eyes this time around.

I have made such steady progress getting off the Ativan I don't want to increase the dose at this time but that may be a good test. Has anyone here been on this type of drug long term?

Sure would appreciate any input on this.....

(Scott, you were such an encouraging force for me back when I was going through so much discomfort. You may remember I had absolutely NO support from my "other half". So sorry you are back into this nonsense again. Thinking good thoughts ....

Linda

 
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