Vertigo

[Deesknee]

Hi Everyone,

Prayes to all my disboard friends. I haven't been on much, but all my disboard friends are remembered in my prayers.

I am currently suffering from Vertigo. I was first diagnosed Feb of 2008. It went away for the most part for a year. Only having passing moments of it during that year. Unfortunately, it came back this past winter. I have had few days without atleast a passing wave of it since. Since April 1st I have been suffering from it to the extreme. Meaning nausea (& worse), stumbling, even fallling. I can't sleep due to the feeling of falling out of bed. The doctors have prescribed meclizine, even though I take 1/2 a pill I cann't stay awake with it. I have been pretty much unable to work. I'm not driving. It is difficult to be on the computer or read. I am constantly spinning. I have tried, Physical therapy, meds, psychologist, 2 neurologist, an ENT who speciliazes in Vertigo/meniurs disease, accupunture. I cann't go to a chiropractor due to other medical conditions.

I have faith that everything happens for a reason. I realize there are alot more serious conditions. We know I am blessed. My concern is financial. I'm barely middle age, I cann't retire. I have been approved for FMLA, and have just applied for short term disability. I waited as long as I could before I even applied for it, hoping I would be able to return to work, but now all my paid leave is gone. I spoke with the disablity insurance people today, now I am concerned because this is generally considered an intermitten medical condition that they will deny my claim. Does anyone have any good news regarding anything like this. I just need a little hope. I think since all I can do all day sit & recline, I have too much time on my hands, therefor thinking too much.

Like I say. I cann't be on the computer too much. My DD is helping me out by typing this. ... which would explain any she's instead of I..(sorry)

 

[MinnyGranny62]

Oh sweetie I am so sorry that you have to go through this. I myself have suffered from this off and on but not as bad as you have. Please know that you are in my prayers and hoping that this will get better.
This is a horrible feeling for anyone that has never experienced this.
Shirley

 

[Mackey Mouse]

Oh.. I just saw this.. hugs to you...

Have you gone to ETN specialist. Did they say anything about crystals in your ears falling out of whack so to speak and they could do this procedure where they sort of turn you upside down to get them back into place..

I have had this.. but for a short time.. it was awful.. I got out of bed, could not walk, had no idea where I was, roomwise, and vomited everytime my head left the pillow, I was in the bed for a day until it passed.

I know you are in MA.. what about the Mass Eye and Ear or getting yourself to a specialist in Boston that deals with this type of thing. I am not sure if you are staying locally, but if you are, maybe it is time to head to the big guys in Boston..

I know disability can be hard to get, but if you cannot get out of bed to go to work, for the reasons you have stated, then what can you do? If you are apply for STD through your work, your work should give it to you. If you are applying through social security, they can be difficult, but if turned down appeal. You need to find a solution for the vertigo....I know that I have heard people having it longer than I did, one horrific day, but longer than a week, I had not heard about.

I googled this and they are doing work at MGH and Mass Eye and Ear on this type of thing..

http://healthguide.howstuffworks.com/benign-positional-vertigo-dictionary.htm (this talks about the test I mentioned)

 

[Regina]

I've had mild episodes but nothing like what you're dealing with.

As Marsha suggested, perhaps you can look into the program at Mass Eye and Ear.

I'll keep you in my thoughts and prayers.

 

[Deesknee]

Oh.. I just saw this.. hugs to you...

Have you gone to ETN specialist. Did they say anything about crystals in your ears falling out of whack so to speak and they could do this procedure where they sort of turn you upside down to get them back into place..

I have had this.. but for a short time.. it was awful.. I got out of bed, could not walk, had no idea where I was, roomwise, and vomited everytime my head left the pillow, I was in the bed for a day until it passed.

I know you are in MA.. what about the Mass Eye and Ear or getting yourself to a specialist in Boston that deals with this type of thing. I am not sure if you are staying locally, but if you are, maybe it is time to head to the big guys in Boston..

I know disability can be hard to get, but if you cannot get out of bed to go to work, for the reasons you have stated, then what can you do? If you are apply for STD through your work, your work should give it to you. If you are applying through social security, they can be difficult, but if turned down appeal. You need to find a solution for the vertigo....I know that I have heard people having it longer than I did, one horrific day, but longer than a week, I had not heard about.

I googled this and they are doing work at MGH and Mass Eye and Ear on this type of thing..

http://healthguide.howstuffworks.com/benign-positional-vertigo-dictionary.htm (this talks about the test I mentioned)

Thanks Marsha & to everyone. I went to Phys therapy yesterday. Although the Physical therapist stated she couldn't "diagnosis" me since she isn't a doctor. Her professional opinion is something called Labrynth Vertigo. It was hard for me to follow her a bit. She gave me a print out to read. As far as I can understand I have damaged the nerve endings in my inner ear (permanantly), and will now have to train my brain to compensate the damage. There are apparently 3 specialist in the NE area for Vertigo. 10 in the country. One of these specialist I saw last year who diag'd me with the benign Positional Vertigo/severe acute vertigo, which is why (I guess) my primary just sent me back to the pt again with this bout. Bad news is this specialist just retired.....as in 5/1/09! Mass General has another specialist, who I am planning on asking my primary for a referral to see, but I am going to give the pt a try first. The situation stinks, but I have alot to be thankful for am an trying very hard to focus on that. Did I mention I have triplets graduating HS in 5 weeks? I have great kids and a great DH who are pulling my share preparing for that as well as our celebration trip to WDW 2 days after the graduation...... I am a bit of a control freak. I think there is a lesson to be learned here. Today has been a long day. But, I was actually able to type this myself. It has taken a looong time. I'm sure many typos, but it is progress. I have pt to do at home. I just need to relax, stop worrying about things out of my control, and deal with the things I can. Please keep any prayers coming. I will do the same for all of you. Thanks for the prayers and thoughts.

 

[Hoan & Poopie]

My wife has been dealing with it since 2003. They (dr's) are 95% sure that hers is BPPV, the type where crystals in her ears get dislodged. It has been very frustrating for her when it flares up. We do maneuvers at home to treat it, but I imagine in your case it the treatment would be different. The problem was getting a definite answer from someone. She was at ENT's, balance centers, had mri's done, etc.

 

[Deesknee]

My wife has been dealing with it since 2003. They (dr's) are 95% sure that hers is BPPV, the type where crystals in her ears get dislodged. It has been very frustrating for her when it flares up. We do maneuvers at home to treat it, but I imagine in your case it the treatment would be different. The problem was getting a definite answer from someone. She was at ENT's, balance centers, had mri's done, etc.

WOW! 2003????!!!! Does she get flare ups very often? Last year I was diagnosed with the benign positional vertigo, they gave me the manuevers to do. They did help then. unfortunately, when I can do them without getting sick to my stomach, they don't seem to help. I think this is different. The Labrynth disease seems like it might be correct. According to the website my husband found I have every symptom on it. Now, Labrynth is what the physical therapist said, if the doctor agrees, maybe I can see light at the end of the tunnel. The new treatment is simpler & the results are yet to be seen. So far, I feel like, I have a few moments of clarity (if you will), but then the balance seems worse than before doing the treatment.

Thanks for everyones input.

 

[Deesknee]

Hi Everyone,

Just need to vent. I'm not on the computer too much, do to the fact I still have the vertigo. Doctor confirmed he believes it to be caused by Labrithitis. The virus permantely damaged the nerve endings in my inner ear. I was thinking the new Physical Therapy was working, but I am getting very frustrated. Today is an average-good day. I have had moments that I don't feel as though I'm falling out of my seat, or my head is spinning. I am just freaking out. My kids graduate High school in less than 2 weeks. I don't want to look like an idiot walking like I'm drunk. Apparently, it is normal during the process to retrain the brain to compensate for the nerve loss, for the brain to not be able to function normally due to the inability to focus on one isolated thought. I get distracted easily by background sounds. I want to sit at my kids graduation & absorb every word, every sight, every smell. I want to remember forever the day "the experts" told me would never happen. Then 2 days later, 2 weeks from tomorrow, we are supposed to go on this great vacation to WDW. 4 of their friends are joining us for the first 4 days, then just us. Now, I don't know if I can do it. My work situation is at risk. I am waiting to hear if I have been approved for short term disability. Thanks for listening. I am starting to get confused. I am logging off. Hope all my disboard friends are finding happiness & serenity.

Dee

 

[Deesknee]

Just wantedt to thank everyone for the prayers & well wishes. Even though I am still suffering with the vertigo. I got the approval for the short term disability, they have ok'd the first month. I now wait fo r them to approve ongoing leave. Atleast I hpefully will be able to stay up with the mortgage. So thanks again for any & all prayers & well wishes. I will continue to remember all my sidboards friens.

 

[A Mickeyfan]

WOW! 2003????!!!! Does she get flare ups very often? Last year I was diagnosed with the benign positional vertigo, they gave me the manuevers to do. They did help then. unfortunately, when I can do them without getting sick to my stomach, they don't seem to help. I think this is different. The Labrynth disease seems like it might be correct. According to the website my husband found I have every symptom on it. Now, Labrynth is what the physical therapist said, if the doctor agrees, maybe I can see light at the end of the tunnel. The new treatment is simpler & the results are yet to be seen. So far, I feel like, I have a few moments of clarity (if you will), but then the balance seems worse than before doing the treatment.

Thanks for everyones input.

I have been living with this since 1991! actually before that, just not dx'd. I have some bad spells. I have never done the exercises. When I was in the doc's office & they were trying to "teach" them to me, they made me sicker. I have learned to live with this the best I can. Seems windy days really get me & I cannot look up into the sky???
I am 52, I have been suffering from "dizzy spells" & migraines since I was 12. Offical Vertigo dx, like I said, didn't come unti 11/91 when for 3weeks, I could not get out of bed. The force of the spin physically would throw me back down.

 

[Deesknee]

Hi Everyone,

Just an update. The June trip to WDW for the kids grad went good. The kids brought a total of 4 friends. They had a blast. DH, DD 6 and mysefl statyed in a studio then when the triplets friends went home we all stayed in a GV.

Two of the triplets are living in the college dorms, the other is commuting to a local college. All are loving it.

I continue to struggle witht he vertigo. I've seen another neurologist who seemed to think it is related to migraines, even though I haven't had a migraine in years.(and it is believed the migraines were related to certain types of chocolate). He put me on meds which caused scary unusual side effects. I am currently in between meds. We will try a new migraine med next week. Wheterh or not it works I am coping. If it doesn't work I am ready to just call trying new meds and PT quits. I can live with it. It is not painful, and it is not life threating. Just frustrating, not working and not driving are about to put me over the edge, but thank God I have a fabulous support system.

BTW, the 6 year old loves 1st grade.

As always my disbouar friends are in my thoughts and prayers.

 

[Pinktulip]

Did anyone find someone in the Boston area to help with vertigo???

 

[Deesknee]

Did anyone find someone in the Boston area to help with vertigo???

There was a great specialist in Braintree, but he has since relocated to RI. I believe his name is Julius Freedman. I beleive the Braintree Rehab hospital in Braintree MA (about 30mins. south of Boston) may be able to give you a name.

Honestly though, it is important in my experience to find what is causing the vertigo. Mine for instance is related to migraines. Apparently the main cause of vertigo is an ear situation, caused by several different things. I have been told by several "specialists" that the most common cause of vertigo is ...age. (I'm 48) That type of vertigo usally comes and goes, and PT is generally very helpful.

Good luck. I have had vertigo continually for over 2 years now. If you would like to ask me anything, feel free to pm me.

 

[micheleq18]

I was diagnosed with Vertigo this past Wednesday. Since that morning I have been dizzy and/or unsteady almost constantly. I cannot turn my head to either side without getting a wave of dizziness and nausea. The only time I feel normal is laying down with my head very still. Pretty much any movement causes some dizziness in some degree or another. Obviously, I cannot drive which means I have not been to work since Wednesday morning. Also, sitting up without my head supported (ie. back of chair or couch) is difficult for any length of time.
The doctor wants me to wait a whole month before doing tests because it may be viral and go away on its own. I would rather have the tests now so that I can deal with it and hopefully return to work. I have another appointment tomorrow to discuss this. Also, I have tried the medications but nothing seems to help.
I am scheduled for a trip to San Diego this coming Monday for a trade show but not sure how things will play out.
When you went to WDW did you fly? If so, did that affect your inner ear?
I appreciate any input you can offer.
Thanks!

 

[Deesknee]

I was diagnosed with Vertigo this past Wednesday. Since that morning I have been dizzy and/or unsteady almost constantly. I cannot turn my head to either side without getting a wave of dizziness and nausea. The only time I feel normal is laying down with my head very still. Pretty much any movement causes some dizziness in some degree or another. Obviously, I cannot drive which means I have not been to work since Wednesday morning. Also, sitting up without my head supported (ie. back of chair or couch) is difficult for any length of time.
The doctor wants me to wait a whole month before doing tests because it may be viral and go away on its own. I would rather have the tests now so that I can deal with it and hopefully return to work. I have another appointment tomorrow to discuss this. Also, I have tried the medications but nothing seems to help.
I am scheduled for a trip to San Diego this coming Monday for a trade show but not sure how things will play out.
When you went to WDW did you fly? If so, did that affect your inner ear?
I appreciate any input you can offer.
Thanks!

Hi, I'm sorry to hear you are going thru this. I wouldn't wish this on anyone.
As far as flying. I recommend you mention it to your doctor. I did fly to FLA. The initial ascend & decend bothered me but, no more than riding in the car. While flying in the air it didn't bother me anymore than sitting in a seat that was not moving. Turbulance did bother it, but I was fortunate not to experience this much. I have heard others say flying is horrible for their vertigo. Keep in mind, my vertigo is migraine related. Not related to inner ear fluid. I feel for you regarding not driving too. When I first got vertigo I continued to work, but had to rely on others to drive me. I still depend on others to drive me, that is a huge adjustsment. Keep the faith most peoples vertigo goes away in a couple of weeks. The very first time I got it I was sent to physical therapy & the excersises they had me did help. They kept me going for over a year. I would get the symptoms of vertigo, do my excersises and the symptoms would become mild to the point of barely noticable. PLEASE try not to get discouraged. If you have any questions, please feel free to ask. If you don't want to share publicly, feel free to pm me. I'm no expert, but I can share my experience with you.