Sick of it all!

Recently I've been sleeping 12-15 hours a day, throwing up 2-3 times a week, not eating much, and barely making it to class. I had to quit my job. Even if I had the time to go, the motion of things under the microscope makes me dizzy. Luckily my BPPV has gone away so I can drive again. I don't go very far, just to campus, about 3 minutes from my apt. I used to take the bus, but that makes me sick now.

I think I'm getting worse. Before I could walk to class from the parking lot on the edge of campus, just taking it slow. Now I can't even do that without getting dizzy. I'm getting a medical parking tag so I can park next to the building my class is in. It's not a handicapped parking tag, just an on campus thing. Basically I get to park where the employees park. My doc says this is a sign that I have a plf not mm. Activity makes my fistula leak which makes me dizzy. If I ignore the mild dizzies and keep trudging on doing what I'm doing, sometimes it leads to a full on vertigo attack. I used to be able to know when it was coming because of fullness in my ears, but I haven't been having as much fullness. I think it's because I'm not over pressurized anymore because of low salt and dyazide, but my fistula is still leaking.

I seem to be having more problems lately with other things causing nystagmus. Before fast movement over a wide view would make me nauseous, but now little things like my tiny tv or my aquarium on the other side of the room sets things off. I swear watching tv on Friday set off my vertigo attack. I'm also not using my computer nearly as much as I used to. I used to be glued to this thing, but now it makes me dizzy. Also medium toned buzzing or clicking noises make me dizzy.

Good things... Since I've been taking dyazide and sleeping on an incline, I've rarely had any pulsitile tinnitus. My symptoms seem to be only vertiginous. I have excellent hearing and no non-pulsitile tinnitus.

I'm going to try to go on another week of bed rest to try to heal my fistula. I'm on holiday most of next week so I'm just going to skip the one day of class I have. I'm going to call my doc tomorrow with my plan and see if he thinks I should increase my dyazide dose while I'm resting. I'm still debating whether or not I should consider surgery. It's not always successful especially when the fistula is seemingly spontaneous like mine. I think I should ask him if he looked for a superior semicircular canal dehiscence on my CT scan.

 

Sorry you are having such difficult time. Bed rest will help, it does me at least.

remember all this is stressful to your-our systems and sometimes our bodys are telling us to stop and smell the clean sheets on the bed.

Hope things inprove

Tuck

 

Cillana-

Sorry you are having such a rough time right now.... at least there is a positive of the tinnitus being almost non-existant and the hearing being better. Sure wish it wasn't a trade off for the worse vertigo though.
Hopefully your doctor will have the answers for you.

Just know that my best wishes are with you
Hang in there!
Dianna

 

Hope you get to feeling better very soon. Take care of yourself and try to not stress about things.

Good luck and Hugs to ya!

 

Cillana - so sorry to hear you're having a rough go of it these days. I hope you soon find better days and more answers....

xoxoxoxo

deercharmer

 

I am sorry you are having such a bad time. No one deserves that. I pray things will improve soon.

 

Thanks for your kind thoughts. Crossing my fingers that a week in bed actually helps. :-\

 

I hope so, too!!

 

hope you feel better soon :-*

 

Good luck........Lisa

 

I hope the week in bed is exactly what you needed - feel better soon.


Amethyst

 

Sorry you're feeling so lousey Cillana but by all means take to your bed and stay there, after two very hectic weeks I've been sleeping a good 12 hours a day, my take on that is- your body is trying to tell you something. Listen to it- hope you're feeling better soon, hugs-- Loretta

 

HOPE YOU FEEL BETTER SOON!!!!!


MAGGIE

 

Sorry you are having such a rough time. It is no fun. Prayer will help Hang in there.

 

yes, I get where yo are coming from. There are times when I believe that the disease has ruined my life, but then I realize that I am still me and that is a good thing to be. Best wishes for some very good days ahead.
Paul

 

.

 

you need to ask oto/surgeon if he found a dehiscence of the superior canal - a high resolution cat scan is needed - it can be detected on a mri if it's large (the dehiscence) but usually only detected through the sophisticated cat scan.

i have bilateral scd and mm - so I'm not operatble.

my medicine that helps
transderm scop - patch behind ear every three days to control symptoms
meclizine
dyazide
ativan - only as needed - nausea, vomitting, dry heaves
phenegran - " "
zofran - " "

EAR PLUGS

friends and family - mm forum


The superior canal dehiscence diagnosis has only been around for six years or so and so very new and in virginal territories - but do try and work with your eyes. Remember the eyes and ears direct the brain. My eyes jump upward and away when I hear a sound; so it confuses my brain and it gets the illusion of movement - vertigo. Also, the fistula, allows the ears to send the wrong signals to your brain again the illusion of movement or disequilibrium. When I'm somewhere outside the house and I know an object is going to make a sound; I force my eyes to stare at it. When I see a fire truck coming toward me I force myself to stare at it and tell myself that noise is coming from the truck and not someplace else. It's difficult and doesn't always help stop the vertigo but it does make the eyes work better. The water dripping in my faucet (sounds like its in my head ) however if I went to look for its source I couldn't find it - I mean - the sound and its vibrations lie to me - telling me its behind me when in actuality it's in front of me -

hugs & Prayers

 

I'm having alot of trouble reading and writing both on the computer and on paper lately. I'm trying typing with my eyes closed so it doesn't make me sick.

I was going to spend my holiday at my parents house but I never made it there. About half way there, I made my mom pull off the interstate at the nearest exit as the road was very bad and I was getting very sick. Even after she pulled into a gas station and turned off the engine I still felt sick and started getting rotational nystagmus and threw up on the pavement. After resting a bit I made it to the bathroom leaning heavily on my mom. I threw up again in the toilet. A little after we got back to the car, my nystagmus stopped and I felt better. My mom said we could take an alternate route around the bad road. I decided I'd rather go back home even though we were half way there because I didn't want to have to ride all the way back on Monday.

I called my doc and told him about my symptoms. He said my symptoms sounded more like BPPV than PLF. I have an appointment for next tuesday to check for BPPV again and have a repositioning (epley) done if he finds it. My mom really doesn't want to pay for that so we tried the home epley manuver instead of bed rest. First we tried it without a vibrator. It made me a little queezy but not really and my mom didn't see any nystamus. We decided it didn't work since later that day I did some movement that made me sick. We tried it again today with the vibrator. It made me really sick and caused nystagmus that went away about 60 seconds after each step. My mom said it looked horizontal and wasn't nearly as big of a movement as when I have a vertigo episode. I'm now supposed to keep my head vertical for 72 hours. It's really hard to sleep sitting straight up with a cervical collar on but I'm still worn out after my episode on Tuesday. I was awake a total of only 9 hours on Wednesday.

My most recent episodes don't seem to be attributed to fluid changes since I haven't changed my diet (very low salt, no caffeine) or my dyazide dosage and I'm not premenstral/menstral. I'm wondering if I'm getting dizzy from BPPV or my eyes not tracking objects and it's stressing me out and causing a vertigo episode.

I'm now taking antivert all the time but it's not enough. Even when the train going by (close enough that I can hear the whistle but not the engine/wheels) which barely shakes my apt (I never noticed it before) makes me sick. Not being able to read is really bad. I don't know how I'm supposed to study for school. I had a paper to write and I had to make my mom read my notes back to me and type what I dictated. I couldn't look at the screen at all. I seem to be doing better right now.

Thanks for the thoughts and comments. I think I'll ask my mom to write a list of things to ask my doc when I see him on Tuesday (about the dehiscence, etc.).

 

Hope you start to feel better soon!

 

Good luck with the Epley!