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.

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

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! :)

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!

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.

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!

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

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.

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

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!

Hi Lauren :wave:

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

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 :cool:

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

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

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

Hi Linda,

Great to hear from you again! But sorry you are getting some nasty feelings with the reductions. My guess is that you are either having withdrawal effects from the meds themselves or you have kicked off a small decompensation event by lowering the drug, or a combination of the two. At any rate I'd persist. Keep the dose right where it is until things settle and then scrape more off when you are ready. My decomp events typically last 5-6 weeks to give you some idea and so it may be worth hanging in there while it burns out or your body accommodates the lowering of the drug dose.

I am feeling *marginally* better today and am really only one week into this decomp event although there were "previews" while I was on holiday.

Anyway, keep us posted. I'll be interested to hear how you go considering I still have to get off the SSRI at some stage this year.

Best....Scott :cool:

Thanks for your encouragement, Scott. I agree with you in that I should persist with my taper. I will hold at this dose until I am feeling better. The "benzo board" geru is suggesting that I "updose" until I feel better and then continue my taper with either Valium which has a longer half life or taking my Ativan 3-4 times daily and taper from each dose. This method would help eliminate the interdose withdrawal I am getting.....Golly, this just threw me for a real loop! I was so hoping to be done with all of this....

Do your symptoms with decompensation include a "tight" feeling around your eyes along with blurred vision? Also, my ears feel a lot of pressure, intermittently from side to side....cotton head is the best I can relate to at this time! :eek: Ativan can cause loss of memory, foggy brain and depression which I was experiencing big time. Hope everyone considers the pros and cons before taking benzodiazapines for any period longer than a week or so.....my dose was really low but took it for over 2 years.....and I am paying the toll now trying to get off of it....

Wishing everyone a great day.....

Linda

Gloria- I have no idea how mine started. The doctor at the Mayo clinic that i visited over thanksgiving told me I had VN and that it probably left my ear damaged and that it would take a long time to get over. So I guess that it started from a virus....but I don't recall being sick and then this happening....it really came out of nowhere...I mean I was gradually having little dizzy spells...mostly would hit me at the gym after work...but I thought that it was just from being tired. It wasn't till one day at a friend's bachelorette party that it hit and just never went away.....and it was just a wierd feeling where I felt spacey and not right and then soon after it turned into dizziness. It is very weird and i had no idea that anything like this could ever happen to someone...something that made you feel weird all the time. It's very scary. Why is there never anything in magazines or on the news and why has hardly anyone ever heard of it when from these boards apparently it effects a lot of people? I wonder these things all the time.
Good to hear from you Lizzy! I printed that post that you just sent off as well and will continue to read it when I feel bad...like today! Thank you so so so much for posting positive things...it's the only thing that keeps me going sometimes. :)
Scotsman- thanks for the kind words...I know patience is key.....it's just hard...and I do have a therapist.....it's very helpful to be able to talk to someone, that's why I have to get on these boards! ;)

Hi Lizzy,

It was so nice to hear from you again. Just as I was telling Lauren, it wasn't until recently I really noticed some changes and I am at my 1 year mark so it coincides with your recovery. As always thanks so much for coming back and posting. It did me a heap of good to hear of your recovery.

Just one question, do you recall, I know it is hard to remember when each and every symptom went away, but did you have tinnitus past your 12 month mark? Just curious as that symptom depresses me the most.

Thanks so much - Gloria

Hi Scott,

Just wanted to say hello as I was worried about you and this relapse that hit you. Glad it sounds like your bouncing back a little and good to see you on the boards again. Can't wait until it's totally gone for you as I love seeing your pictures.

Best - Gloria

Oh...and Gloria, I too have the ringing in the ears.....it's more like a low buzz all the time...hate it. It didn't start till 6 months into my VN though....very strange....I hope that miraculously it goes away someday. I am taking lapovlavoniods(sp?) for it though, they are a vitamin that is supposed to improve inner ear health that my ear doc reccomended....maybe you could look into taking those?

Hi Lauren,

Oddly enough my tinnitus developed 6 - 8 weeks into this too. It wasn't right off the start of it. Mine is a buzzing noise too and like you I sure hope it miraculously goes away one of these days very very very soon.

I've been taking B vitamins all year as I heard they were good for nerve development. I'll have to look into what you are mentioning. I'll try and do a search on it. Let me know if it seems to help you.

Hope your doing better this weekend. - Gloria

Hello Gloria,

I am new to you gals but will tell you that I continue to suffer from tinnitis and a general buzzing sound as well. I came down with VN in April, 03. My hearing is very acute but the buzzing sounds have never left me. It sounds somewhat like a radio frequency....Guess I just got used to them. It is a pain....

Are you gals taking any medications other than the vitamins? I suppose Antivert would be a step backwards at this point... Another question..... has anyone ever noticed whether the anxiety related to this junk ever caused a change in your blood sugar which in turn can make you feel dizzy? Guess I am just trying to pin these weird recurring feelings on something.

Wishing you all feel better today.

Linda

Hi Linda,

Actually I think that is really good advice to swap over to valium. It definitely has a longer half-life and would surely let you down a little more easily. I'm not sure though if it is possible to come off benzos without any rough patch or not. I suspect it depends on your physiology really. I know one girl, for example, who just cruised off her SSRI and she'd been on it for 3 years. Others go to hell and back trying to stop. You can only do what you think feels best for you I guess. But you've certainly made it down to a really low dose so far. Well done on that front!

No tightness or cottonhead feelings with me. Mine seems to be all visual vertigo stuff. can't hold objects still in my vision and if I force it to happen (ie. on a PC screen or reading a book) it makes me feel very uncomfortable to the point of panic sometimes.

Gloria - thanks for the words. No real change hear I'm afraid but at least I can function still. Just preying I've hit a peak with this and it's heading down the other side. Re: the tinnitus, have you ever tried a chiro? I was talking to my chiro about this and he said to give it a shot. Maybe it'll help to release tension in the upper neck or simply break the pattern of whatever is going on.

Cheers...Scott

Sorry - I duplicated this post somehow. :confused:

Hi Scott,

I'm sorry, I must of read into your post wrong. One of these days something is going to click for you and it won't happen again.

I haven't gone to a chiropractor. I went to an acupuncturist back in June 2004 and had a bad experience with it so I guess I'm a little chicken. My therapist did say that a chiropractor helped her years ago to overcome an illness she had battled for years. She mentioned that at first her neck was really sore and then her symptoms begain to improve. I guess I'm a little nervous about adding any extra discomfort to the way I feel. It just might set me off again.

It has been a bad day for me. My son had a cold this past week and I caught a little of it. I've had a lot of pressure and pain in my head and ears today. Just makes me feel so sad sometimes. I can't believe how much a life can change. Anyway, I'm trying to take day by day.

Wishing you a great day tomorrow - Gloria

Hi Linda,

Sorry to hear your tinnitus has not gone away. Makes me nuts to hear that as I hope everyday that mine will go.

Sorry you've been dealing with this so long. Are you still dizzy? What symptoms do you still have?

I have been on a small dose of klonepin since August 2005. I've been ill since December 2004. My ear stuff started in January 2005. I'm much better than last year and hope by January 2007, I will be my old self again.

Nice chatting with you. Hope you kick this thing soon. - Gloria

Hi Linda,

I went back and reread your posts and should have done so before I replied back to you. Curious to hear about the weird feelings around your eyes as I had vision problems all year (before taking the benzo (klonepin)). My eyes felt very crossed and I just couldn't see right. After it being upped slightly the end of October, for the most part my eyes felt so much more normal; however, from time to time I get a lot of pressure around my eye area and it just feels weird. I chalked it up to doing more things because my vision and dizziness got better and also thought I was over using my eyes and causing a little eye strain from excessive computer useage and watching too much television. Makes me wonder if maybe it is the klonepin now. I had thought about staying on it until summer as I though that was the best time to try and ween myself off of it. What was the full doseage you were taking. I take .5mg at night and .25mg in the morning. It really has helped me with the dizziness and vision problems orginally caused from this inner ear stuff and perhaps some of my anxiety from this.

I know how discouraging it can be to feel good and then have it shattered again by getting symptoms back. I'd try and wait it out another week or give your doctor a call and see what he/she says.

Coincidently, I came down with this one month after I got back from Florida.

Take care - Gloria

Hi Guys,

Scott,

Nice to hear from you and sorry you're not feeling great at the moment - I'm sure it wont last long. In answer to your question, throughout my recovery I had many relapses, initially the relapses lasted a couple of weeks, then a week, then a few days etc. Eventually, I would get the occasional dizzy day and this went on for the longest time, then just dizzy moments with particular movements (usually new ones). I do remember colds and bugs would make me feel dreadful, but strangely I would feel OK (apart from the cold) during the virus, it seemed to hit me when the virus was getting better. I hope this answers your question, I did have set backs (a lot) but I seem to remember they lessened in severity and length as time went on.

Gloria,

I think the tinnitus was one of the last things to go for me, I had a ringing rather than a buzzing but I must say it was only ever noticeable when trying to get to sleep at night. I would say the tinnitus and the pressure in the ears finally left me at about 14/15 months. In fact, only a couple of months ago, my ears felt slightly clogged - but it didnt last very long. The VERY last thing that went away for me were the eye symptoms - for the last few months, this was all I had - still not very nice. I felt as if my eyes were unsteady and I couldnt stare at anything without it appearing to move slightly. The visual stuff was definitely the last to go for me and I have heard this for others too.

Feel free to ask any other questions, I do try to pop back here when I can because I got so much support myself.

Lizzy x

Hi to Subs x

Hi Gloria,

Regarding my eye symptoms, Benzo (Ativan), etc. My eyes feel the same as yours. Crossed and blurry. I actuall had 2 posterior retinal detachments last year. (Flashing lights and terrible floaters) It resolved and was OK after about 2 weeks. Not a real retinal detachment. Don't know if it was benzo related or not but did happen in both eyes within 1 month of each other. I have recently started using artificial tears 3-4 times a day and that seems to help the weird feeling I get. My eye symptoms were the first WD symptoms I got when I started to taper.

I was prescribed 1mg of Ativan for the dizziness/anxiety. It literally gave me back my life....I even drove from Florida back to NE Pa without any problems. I don't think I ever got "dose tolerant" but the more I read about benzos, the more I realized that I didn't want to take them much longer. All my Dr's (3) sugeested I consider staying on Ativan the rest of my life! I am 63 so maybe my age had something to do with their thoughts on this. I think the Ativan was beginning to cause depression and apathy in me and I didn't like this. ( not real sure about this as I am in a horrible situation with hubby at home) Basically I am an upbeat high energy, happy person. So, I started to taper off last Feb. I am following a water taper which is very easy on your body and helps eliminate most the ugly side effects. Ativan only has a half life of about 8-10 hrs so I started taking it twice daily. (.5mg am, .5mg bedtime). I was eventually able to totally eliminate the morning dose and I am now down to 0.25mg in the evening. Now, at this low dose, I am getting more WD symptoms than I ever experienced before. The eye symptoms have always been around. I did go through a 1 month bout of various GI symptoms at about .40mg in my taper. Klonapin has a longer half life and you can taper off that with 2 doses per day pretty easily. Also, I might note that .5mg of Klonapin is equal to 1mg Ativan or 10mg of Valium. Please talk with your Dr. and get a SLOW taper schedule. There is a great web site related to benzo withdrawal and people there can do a schedule for you...It's a nasty drug for some people.

I'll help you any way I can through this board....the big question is "QUALITY OF LIFE". If taking a benzo gives us the freedom to move about without being dizzy, so be it....at least I am going to try and see if the dizzies now are caused by Ativan withdrawal or if I am still experiencing a vestibular problem.

Have a great day,
Linda :D

Lauren and Gloria,

I was reading your posts and it seems that I have exactly the same symptoms. I noticed a huge improvement when I began taking an SSRI, each time I upped the dose a week later I noticed more symptoms that were gone and more things I could do. Mine began when I was pregnant and worsened throughout the pregnancy and really went over the edge once my baby was born. Anyway, long story short, six months later I can basically do everything but still have to take it easy as overdoing it combined with lack of sleep (I have a VERY active baby!) can cause decomp and make me feel very spacey. I walk about a mile everyday, and like you Gloria feel much better outside so we have discovered lots of new parks and places to walk!! Big stores with florescent lights really bug me still, but I force myself (as I've had to do to even get off the couch or out of bed when things were horrid) has been the best thing I've found as each time I go the trips get easier, except when I haven't had enough sleep. I've forced myself to read and rest when my baby naps and that helps with energy, but I think the reading brings back the back and forth head movement feeling as well as random bursts of pushes in my head. Those weren't happening for a few weeks, but the only new thing I've done is reading a lot throughout the day. Maybe it's a good VRT??

I keep saying I don't need to see a therapist, but will probably call tomorrow because the anxiety still creeps up sometimes though doesn't send me into an anxiety attack. I just want to be able to go to the store with ZERO anxiety! I'm so scared I'm going to get really dizzy and pass out or something that I make myself dizzy!!!

Question: Benzos are supposed to supress the vestibular system, right? I take one every once in a while if I'm having a very "off" day (not anxiety, just spacey) and it helps. I only take 1/2 of a .25mg xanax now and it actually helps. If you take them full time, doesn't that affect how your brain would compensate?? I'm taking an SSRI, actually a high dose because of the anxiety and my doctor thought postpartum deppression was the cause (although I know it's a combination of dizzies and hormone stuff, the dizzies causing the depression), hopefully it's not actually a vestibular supressant either, although I don't think it is. It helps me deal with things sooo much better.

Lauren, like Gloria I had to FORCE myself to do things. Sitting upright for more than five minutes was a huge challenge and things like sitting at the dinner table were almost impossible. So, first I started with sitting alot, then walking, moving different ways and faster, etc... Walking still sets of symptoms sometimes, but if I push past them during that walk, they go away. Everyday I still push myself to do stuff. I"m actually scared NOT to move for a prolonged period as I'm afraid it might cause decomp. I still get that feeling like my brain is being pushed back and forth which is still disturbing, I'm so shocked to hear that same symptom from others!!

Randomly, I just found out about someone who has my exact symptoms and has had a baby recently, might be more MAV than Labs, but who knows. I'm so excited to be able to help someone, in my own town nontheless!! That's what I was praying for through all of this.

Well, this is long, but wanted to say that I've had the exact symptoms!

Dizzymommy- thanks for the reply! I am trying to get out and force myself to do things....yesterday I ran errands for 4 hours w/ my boyfriend and then it wiped me out for the whole night and all of the next day. It's frustrating how tired things can make you. I am planning a party for my boyfriend (fiancee) this weekend and I am scared to death of having people over here and having to entertain.......I am afraid that I will be exhausted after 5 mintues and want everyone to leave! :yawn: I feel that I have to try and do it though and since it is at my own house I should be able to manage better. Anyways.....keeping everyone in my thoughts and prayers!

Hi Lizzy,

Thanks for your response. I've been going through some of your posts as I've been really down. I'm glad to know that even after a year of having this awful noise in my head, there is still hope that it can go. It really bothers me more than the dizziness, the vision crap and even the funky ears and headaches. I really feel if it goes, I will be ok.

I was interested in something you wrote to Scott in the same post to me about the tinnitus going in 14/15 months for you.

You mentioned to Scott that you started to feel ok when you had a virus in regards to your ear symptoms but then after the virus went your ear symptoms would act up. Am I reading this correctly? I had a cold a week ago and it for the first time didn't aggrevate my ear symptoms too much but after the virus was almost gone, my ear symptoms starting acting up more. That is really interesting if that is what you were actually saying in your post to Scott. Then I should take it as a good sign that I am recovering?!?

Thanks so much Lizzy. You have helped me so much with your post over the last 6 weeks or so. I can relate to you so much especially since we seem about the same age and have both gone through this with small kid(s). Take care and again thanks for support.

Gloria

i'm reading all your posts and lauren..you sound alot like what i've been dealing with since this past oct.....

my main symptom is feeling spacey, off balance, wierd vision and lightheaded when i'm out in the grocery stores (which i have been avoiding-thankfully hubby picks up slack), malls or even just out walking during the dya at lunch from work......sometimes i have it when i'm in the house but never as bad.....doc did cat scan to see if any probs existed in my sinuses and head...came back clear and so did my blood work.

how do i know what i have......is it anxiety or an inner ear issue that is causing my anxiety....?

doc put me on anti-depressant zoloft (which i haven't tried yet since amny of the people in the anxiety board have claimed that its one main side effect is dizziness) and xanax which i haven't tried yet either for some reason.

i do tend to get pressure in my head occasionally......i think the worst of course....

really feeling like i have no life......putting off vacation and what happens when i get pregnant and have a child in my shaky life? btw...hubby and i want to start a family soon......

Hi Gloria,

Sorry you're feeling down, I was the same way for many, many months - goes without saying that if you feel crappy for months on end you are bound and perfectly entitled to feel low.

The cold/virus thing was strange, yes you did read it correctly - during the cold I felt near normal (apart from the cold symptoms), I had problems once the cold had gone. The same thing happened to me once when flying - I felt fine during and immediately after the flight. The following day I felt dreadful for the whole day - then it passed. I played tennis with my 8 year old son and felt fine but then slept very badly that night. I cant explain it, I'm sure there is a reason for it - I think I remember Subs telling me once. Maybe he will remind us?

I'm glad I can help you with my posts, it means a lot.

Just made me think when logging in before, Lizzy33 - I'm now 35!! - made me realise what a chunk of my life was taken up. Not any more, thank god. I know you will beat this too.

Take Care and ask anything.

Lizzy x

Thanks Lizzy. Strange but this most recent cold did the same thing to me. I hope that means it is coming to an end.

Mine started when I was 33 too. I'll be 35 in June and hope it is gone by then. It does take up a chunk of our lives when you think of how short and precious our lives are.

Thanks so much for keeping in touch. Talk to you soon and enjoy all your healthy days ahead of you. - Gloria

It is very weird and i had no idea that anything like this could ever happen to someone...something that made you feel weird all the time. - This is the best line I've ever seen... it's made my day infact

I have the same symptoms many of you have and only assume that it is due to something inner ear (I always have ear problems like when I fly it is terrible). I am not dizzy and don't feel like the room is spinning, just the fog feeling.

Do other people feel like the symptoms are worse when they go out in the cold weather for long periods of time? Seems like certain things trigger it more for me then others.

if you were WD from a benzo, this is common, or worse---infections also occur upon switching benzos---tranqs--i saw your post after searching 'Benzo-WD'---but you don't seem to fit---