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Old 08-11-2007, 11:31 AM   #1
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My story, sorry this is long and complicated!

My storyÖÖ.

Hello everyone. Let me start by introducing myself. I am a 35 year old female that has been in generally good health all my life. I have been reading this board for a long time and I so thank and appreciate all of you with your information and words of encouragement. It all started Oct. 15th 2004, I had sinus surgery for a concha bullosa on my left side of my sinus. The ENT made a small hole in my middle bone to drain fluid. Well the surgery went well but two days later I woke up with disequilibrium and dizziness. I donít recall having vertigo at all but a huge swimming head, disconnected feeling and complete inability to balance. I could hardly walk as I felt like I was being pulled down to the left. The floor seemed to jiggle and I felt like I was walking on a trampoline and floating. It also felt like I had put on someone elseís very strong eyeglasses. It was such a surreal feeling. It got better as the months went on but I suffered with it for about a year. I even had my shoulder become permanently tipped down to the left. I had to work very hard to pull it back up and make me straight. When I would hold my shoulders level I felt like I was then listing to the right. I was scared and depressed.

Kept going back to ENT who kept saying I healed well and was fine. Suctioned gel packing inside my sinus, thought pressure changes caused dizziness. Told me that because he opened up a hole to my head that I was now an air head and thatís why I was dizzy. He thought that was so funny. I was feeling to awful to even glare at him.

End of October went to another ENT who thought vestibular neuritis and started me on a one week steroid pack. Normal tymp and hearing testÖ
On nov. 9th I had an ENG which showed a 26% loss in my right ear. (borderline Iím told), I did have an active cold and my right ear did feel blocked before I even went in, the audiologist said it wouldnít skew the results though.

Nov. 11th 10 days of augmentin
Dec. 10th normal MRI
Dec. 15th full allergy testing, No allergies
Feb. 1st another week of prednisone
February 10th all normal bloodwork
Feb. 11th Another ENG, different results, showed weakness in my left ear! Started vestibular exercises.
Feb. Saw neuro-otologist and he said ENG doesnít mean a whole lot, not very accurate, at least doesn't change the plan of care of what he would do.
Feb. 2005, started Zoloft because I was VERY depressed and anxious about having to live with this for the rest of my life and the neuro-otologist said that there was research that the serotonin in SSRIís might help the vestibular nerve.

Well to make a long story short I finally did get better. I did VRTís for about 5months. I would say about a year later I was finally operating above 90% every day. I did not know if it was the Zoloft or the VRTís or a combo of both. I didnít care I was SO happy I was functioning again.
I know you all must know the indescribable horrific feelings I was going through. I cried every day, I prayed every day, I just knew I could not live with this. I wrote in a journal that I have trouble reading it to this day itís filled with so much pain and despair. This was all a new experience for me as I always thought I was in control and had never dealt with anxiety or depression before. It was a sobering experience to see myself crumble into the depths of despair. My mom had to fly in to help me with the kids. I would drive my son to school in the morning and it was so hard to hold in my tears and be happy and send him off. Once I turned from the parking lot, the tears would flow all the way home. I know there are some of you that have felt these things and it really is so awful to live with. The audiologist did tell me that depression and anxiety are a common effect of inner ear disorders. My list could go on and on about me feeling like a failure as a mom because it was so hard to take care of the kids, sitting in my GPís office for a sinus infection and crying like a baby when she asked ďhow are you?Ē During my worst days I even went to see a psychiatrist because I thought he could give me tools to cope, but he was so weird I left feeling worse.

Anyway, I checked the board often in my early days and months to follow. You were all a big source of comfort and help for me. I thought about posting many times but it was such a long story and I was so depressed that I didnít.

There is hope and good news, for a year and a half, I felt normal again. I had the occasional blips during sickness, etc. but for the most part I was whole again. The relief was enormous! I stopped checking the board and it all seemed in the past.(though not forgotten!)

Why am I posting now? Iím so sorry this has been such a long story! I was doing great so I figured I would go ahead and wean off of the Zoloft. I started in January and really took my time and stopped in March. Well I felt just fine all summer everything was going good and then BAM. I guess I am going through a period of decompensation. I was not sick at all, I didnít feel anymore stressed than I have at other times before. (my husband started a new job) Of course itís nowhere near as bad as the first go round. It started Friday July 13th. Itís been 4 weeks now. I started my 10 days ago. I am so depressedÖ. I started crying and obsessing all over again. When I am well I donít think Iím depressed or anxious but when this kicks in I am a mess. Well, since it has been three weeks since it started I decided to go back on Zoloft. I started it again last week. I have high hopes that maybe it and the VRTís will help my vestibular nerve and help me stop obsessing and crying.

Anyway, I was wondering how long does this decompensation last? Is it normal to have a relapse 2 years later? Could going off Zoloft have caused this, my serotonin became depleted? I know none of you all are doctors, but I just feel like I am in a tailspin again. I keep telling myself it went away one time so it will go away again. But when you are in the middle of it, it seems like it will last foreverÖ..

Thanks for listening!

Oh forgot to mention my history of Meniere's disease. I was diagnosed with it back in 1993. I have a variant of it called chochlear hydrops. I never had vertigo at all. I had a full ear sensation and terrible distortion. Everyone when they would talk would sound like a computer voice. YOu know those old computer voices? Anyway, I could talk about that for many paragraphs if you all would like more info but I have had that under control for a long time. The doc did say that maybe it took me so long to compensate due to my ear already being damaged from menieres...........

 
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Old 08-11-2007, 07:15 PM   #2
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Re: My story, sorry this is long and complicated!

Your trouble may not be related to your ears. It could be a rebound effect from getting off of the zoloft. You can experience dizziness from it.

I suggest you ****** "zoloft withdrawal." You'll see that it's not that easy to stop the medication. You have to wean yourself off very slowly in small increments.

 
Old 08-11-2007, 07:23 PM   #3
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Floridagirl77 HB User
Re: My story, sorry this is long and complicated!

Thank you for your reply. I weaned myself off very slowly. I was on 50mg. I did 25mg. for a month and broke those in half and did 12.5 for at least a month finally stopping in March. I had no problems that I knew of at all. Would that withdrawal problem pop up 4 months later, I was thinking that it might be more of an immediate thing. I don't know?....

 
Old 08-11-2007, 07:34 PM   #4
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Re: My story, sorry this is long and complicated!

This is what im thinking, Zoloft can supress your vestibular system. Eventhough you did your VRTS you compensated everything that your zoloft didnt supress. So what I would do, if this was me, is start your VRTS again and stay off the zoloft. Let your vestibular system compensate 100%. And once you are a 100%, still do your VRTS for a few months later. It can take years for your vestibular system to fully compensate. You will get there again!!!

Cathy

 
Old 08-11-2007, 07:47 PM   #5
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joy78 HB User
Re: My story, sorry this is long and complicated!

I was fine for 4 years after my first dizziness attack. I was a mess for over 6 months (diagnosed with labyrinthitis... who knows if that is right or not though...). I cried everyday, I had no idea what was going on with me. I had never been dizzy a day in my life before this. I felt like I was moving constantly, it was horrible. But I did get better. I felt normal, with no problems, except the occasional blip no and then. But I pretty much forgot I had it for four years. Then one day the room started spinning and it all came back. I was pretty sick right before it happened. I guess that is what brought it back. I don't really know though. It pretty much took the same course. It took a couple months to feel better, and then it was a slow process to complete recovery again. So a long answer to your question... but yes, you can get hit with it again after years of feeling fine. It happened to me. But you will get better. Just remember that you felt better before and you will again. I know it's hard, I freaked out too. But you will be fine.

 
Old 08-11-2007, 08:12 PM   #6
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Re: My story, sorry this is long and complicated!

Quote:
Originally Posted by joyb77 View Post
I was fine for 4 years after my first dizziness attack. I was a mess for over 6 months (diagnosed with labyrinthitis... who knows if that is right or not though...). I cried everyday, I had no idea what was going on with me. I had never been dizzy a day in my life before this. I felt like I was moving constantly, it was horrible. But I did get better. I felt normal, with no problems, except the occasional blip no and then. But I pretty much forgot I had it for four years. Then one day the room started spinning and it all came back. I was pretty sick right before it happened. I guess that is what brought it back. I don't really know though. It pretty much took the same course. It took a couple months to feel better, and then it was a slow process to complete recovery again. So a long answer to your question... but yes, you can get hit with it again after years of feeling fine. It happened to me. But you will get better. Just remember that you felt better before and you will again. I know it's hard, I freaked out too. But you will be fine.

joyb...those are encouraging words! did you have the weird visual problems when it was going away, like shaky or wavy vision? the ER doctor said i had labs, but i have yet to get an answer from a real ENT or neuroto...just curious?!?! and hang in there Floridagirl!

Last edited by alexiwildchild; 08-11-2007 at 08:12 PM.

 
Old 08-11-2007, 10:41 PM   #7
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Re: My story, sorry this is long and complicated!

I didn't have any vision problems, except when i would walk it looked like the floor was swaying as I walked. But i think that was more of a sensation thing than an actual vision problem. Lots of people have visual problems though. Look on these boards, you'll see lots of stories,

 
Old 08-12-2007, 03:50 AM   #8
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Re: My story, sorry this is long and complicated!

Hello there,

Really sorry to hear about the resurgence of your symptoms. I guess my first question would be have you only seen ENTs throughout your illness? If you've been reading the boards you are probably aware there are doctors called neurotologists who are specialists in dizziness, they do a number of years more training in to the inner ear and are the people to see if you have a dizzy disorder. ENTs do very little training in the inner ear - they are specialists of the middle ear, nose and throat and should not be the primary doctor for a dizzy patient. They can be very arrogant about their lack of knowledge and will often happily give out a diagnosis when they simply don't have the expertise to deal with a dizzy patient. This can result in bogus diagnosies and bad treatment plans.

I say this because something about the diagnosis you have been given doesn't ring true. It seems highly unlikely to me that there isn't a connection between the cochlear hydrops you experienced previously and the dizziness you have experienced twice subsequently.

As you so rightly point out none of us are doctors, I'm definintely not lol. Which is why I would urge you to seek out a neurotologist in your area. I notice you are in Florida, I did a quick search with neurotologist and Florida and it brought up some results that looked promising. It mentioned a Lauren Bartels at a hearing and balance centre in Tampa. Don't know how near you are to there?

One possibility is that the hydrops has progressed and the dizziness you are experiencing is now a result of menieres. However, the fact that you responded to zoloft - and that may well have contributed to your recovery along with VRT (or possibly caused your recovery even without VRT) is that you may have an atypical form of migraine called vestibular migraine. When you mention migraine to dizzy patients many people will say but I've never had a headache. You don't need to experience any headaches to have this atypical form of migraine - it is a type of migraine that can exist without headache. Two people on this board were originally diagnosed with vestibular neuritis - took an ssri (anti depressant) and then either recovered or improved significantly. They were subsequently diagnosed with vestibular migraine - also known as migraine associated vertigo. The SSRI had acted as a migraine preventative and got their symptoms under control. Vestibular migraine is treated with a daily preventative drug - of which there are many - one of the drugs that can work are SSRIs.

There are strong suggestions that hydrops and migraine are linked and that people often suffer from both conditions. It has also been suggested that migraine can damage the ear causing hydrops. That may have been what happened to you originally.

I clearly can't give you a diagnosis, you need a neurotologist to do that, but my very strong hunch is that you have never had VN. It is possible that the resumption of the SSRI will stop your symptoms again, in which case there is a very strong possibilty that this is vestibular migraine. By stopping the ssri you gave the migraine a chance to flare up again, which is why you have got dizzy again. All I can say is that it is, in my opinion highly unlikely that you had cochlear hydrops and then happened to develop VN. It sounds like the kind of muddled diagnosis that an ENT would give you.

There is someone on the board called Adam who knows a lot more about this than me, I will tell him about your post and see if he can answer your post too.

best,

hbep
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Last edited by hbep; 08-12-2007 at 03:56 AM.

 
Old 08-12-2007, 06:47 AM   #9
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Re: My story, sorry this is long and complicated!

Hi FloridaGirl,

I think what hbep is saying is right on the money - see a neurotologist and make sure they are familiar with vestibular migraine.

Your story parallels mine to some degree. I woke one day with a swimming head as you describe and then, over a series of months, dropped into anxiety and depression. I took an SSRI (Cipramil) and it wasn't long before I shot up to the high 90% area. Another member on the board, Howie, also experienced this on Zoloft after years of dizziness and anxiety - the usual nasty stuff.

The diagnosis for both Howie and myself is vestibular migraine. The SSRI seems to knock out the migraine. Note: I don't get what a typical doctor would call migraine headache either. It's a different kettle of fish that can be confused with Meniere's too. If you have no progressive hearing loss than it's not Meniere's end of story. There must be hearing loss.

No doubt you will feel better on the Zoloft again as it will kill the migraine activity. But the better way is to use a migraine preventative, something I am trying to sort out myself at the moment.

The key is to know you can control this and that it is NOT out of your control as it has seemed. Once you get that and understand the beast you will no longer feel depressed and a victim of it. It's awful stuff I know but can be beat. Howie is 100% again btw. He controls the migraine with a drug called Verapamil.

Hang in there ... Scott

 
Old 08-12-2007, 01:43 PM   #10
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Re: My story, sorry this is long and complicated!

I want to thank everyone so much for taking the time to reply to me and offering such encouraging words. I really appreciate your thoughts and insight into my problem. It's nice to know I'm not the only dizzy out there and that people do care. When I had my first bout I lived in a different state. I saw a couple of ENT's and then got smart and saw two different neuro-otologists. One wasn't much help at all but the other one was fairly nice and seemed to care. Back then when it was lasting so long I had printed off some things about MAV because I thought maybe that was a possibility. The one doc I brought it up to didn't think that was it because I could tell the exact day that my spinning started. He said MAV comes on slowly. But maybe I'm thinking that i had a virus and then from the assault of that this MAV kicked in?. I don't know. One of the ENT's I originally saw back then said maybe my cochlear and my VN were related, but no other doctor really talked about that. I have always had trouble with my ears. Many infections as a child and then I have always had trouble popping them. Many times in a plane I am unable to pop my left ear and I have the most severe pain on desent. I try to take sudafed and decongestant spray to help keep my eustation tubes open. I can remember as a child I had one bout of terrible vertigo. My mom doesn't remember so I don't know what the diagnosis ever was. But I rememember hollaring and gripping on to the bed because I was sure I was going to fall. I even slept on the floor and still felt like I was falling all night long. I was about 7 I guess. Since I have been dizzy this time around I have not seen a neuro-otologist. Thanks hbep, Dr. bartles was going to be my first choice of the one to see. He is about 2 hours from me. There is another one, dr. Liu not to far also. There is a neurologist here that does specialize in balance disorders. I saw him a couple of weeks ago. He was very nice but funny enough I asked him about MAV also and he said oh no you don't have that, just a period of decompensation. He also went on to say that I wouldn't be able to walk I would be so dizzy, etc. but I know that this is not necessarily true. With MAV you can just have an off balance, floating feeling. I thank you guys for bringing up the possibility of MAV again. I will not let that die as a possible cause for me. I think I will make an apppointment with bartles and see what he says about that diagnosis for me. If a pill could stop this, well bring the pills on!

 
Old 08-12-2007, 02:45 PM   #11
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Re: My story, sorry this is long and complicated!

Hello there,

Wow it sounds like you've had an unfortunate time with doctors. It's a terrible irony that even when people get out of the ENT trap and move on to neurotologists, sometimes they are let down there too. We've had some very odd cases on this board where a neurotologist has been no help at all - or dismissed a diagnosis based on strange and innacurate assumptions.

As Scott says you need to find someone who really understands vestibular migraine. It's really only recently that some doctors are getting to grips with it and really understanding it. Sadly that will include some neurotologists as well, it's a question of how much they are educating themselves and how much they are relying on old information and things they learnt years ago. I am lucky in that at the clinic I go to in England they have a total handle on it. As you say it is absolutely not true that if you had MAV you would be so dizzy you wouldn't be able to walk. I am now (wasn't always) a very clear cut case of MAV, this is evident as a few years in to suffering with this on and off I developed severe light sensitivity along with the dizziness (many with MAV never get this) it highlighted that I was a migraineur. Anyway, I have always been able to walk around despite being horribly spacey/vertiginous etc... Although it was hugely grim I have been able to work through periods of it. Migraine can also manifest in many ways - it definitely doesn't have to start slowly. A friend of mine who was totally cured with migraine preventatives started with a violent throwing up spinning vertigo episode. Many people do start with a VN diagnosis - I did as did some others on the board, which then gets changed to MAV when they don't get better or the problems re occur. The episode of vertigo in your childhood could well have been a migraine attack.

When it comes to this condition the squeaky wheel gets the grease. Keep searching and you will get the answers you need. I saw 2 ENTs prior to being seen in the neurotology department. As I am seen on the NHS in England I didn't always see the chief consultant who is brilliant. I saw many registrars along the way who work under her. It was very apparent from that experience that some are a lot better and well read than others. The same is true of neurologists. I have seen a number of them for the same reason. One was totally brilliant - knew everything about the different ways in which migraine can manifest, another was clearly a bit flummoxed by dizziness and obviously knew nothing.

One of the reasons I mention Bartels is I found an article where he had mentioned the fact that menieres could be mistaken for migraine or something like that. A very small clue, nothing definitive, that he might know what he was talking about in that area.

The one very hopeful thing is that you did get better, so you absolutely will get better again. It could be that the ssri will work its magic again, but as Scott says its often better to get on to a drug more specifically known for targeting migraine which might prove more effective. Try not to let the anxiety take you down - know you will recover, don't be eaten up by fears of being stuck like this. I know first hand how detrimental stress and anxiety are to my recovery. My vestibular migraine is mostly controlled through drugs, but I can bring on a relapse with a big panic attack. Big bouts of anxiety are the one thing I have to avoid. The relapses I've had have been quite severe, but unlike when I first got ill, rather than months and months/years, they have lasted a number of weeks. I have the benefit of a migraine drug in my system which undoubtedly helps a great deal.

best,
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Last edited by hbep; 08-12-2007 at 02:52 PM.

 
Old 08-18-2007, 11:20 AM   #12
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Re: My story, sorry this is long and complicated!

Thank you so much, hbep. Your posts are so informative. Thank you for the encourangement that I won't be like this permanently. Thank you Scott, and everyone else also. Something about this disease makes me so obsessive and depressed. It truly gets hard to get up everyday and keep going. It is a curse! Anyway, I will press on... Oh, I see Bartles in September. Looking forward to that!

 
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