Loneman,
Yes its been awhile since i have logged on and what has happen is that the glasses have helped with the headaches alot for awhile and now i am kinda back where i started again the dr i have is currently refusing to up the medication that is working for me and wants to change it to a different one and i have talked to the ear and the eye specialist about that drug and they both say its not going to help me. So i have been struggling each day to make it to work and do my daily tasks around the house and now i am being reffered over to a neurologist which i cant get into until january which is no help to me now. and they want to send me to vestibular therapy again. its not making me happy and i did however feel better for a time and that was great but now im back to being in the dumps again.
Peanutt121
I am giving an update just because. I went to see the neurologist that i was refered to and she did yet another MRI of my head this time the back lobe and again nothing was found to be wrong with my brain. The glasses dont seem to help like they did when i first started using them. The neurologist gave me a patch called scopamine which was helping however i was allergic first it was to be placed behind my ear, and it made my pupil on that side grow very large. So she told me to move it to the back of my neck and i ended up with 3 raised welts on my neck. Each time i put a patch on it got worse with the swelling on the neck. So i was taken off of that. Now i am stuck with no answers again. I still continue to have the dizziness and the feeling crappy all the time.... I have developed headaches that will linger all day long sometimes turning into Migrains where i see the aura around people when i look and it interfears with my vision. I continue to see the 3 specialists they have sent me to and they are all baffled as to where its coming from.
I have since lost my marriage he just didnt get why i couldnt go out drinking with him or other things and had a hard time functioning. so it became he did his thing and i struggle through my day trying to function and hold down my job. So i fineally just left. I currently still have my job that i am thankful for i cannot do any extra shifts or longer shifts than my 8 hours or i get really dizzy and end up being sick. I spend most of my time at my house because i feel safer there than being out. If i go to the store i have to have someone go with me to make sure i make it through the store. some mornings it is so hard to get out of the bed and walk as i walk into walls and trip over things. Long car trips are not very fun for me i usually end up having quite a bit of dizziness and the feeling of throwing up or passing out. My body is getting tired of fighting this and i cry alot. Depression medication is not working as well as it first did so i may have to have that switched to something better. I tend to get cold alot now i dont know what thats about.
Peanutt121
I have been off balance and dizzy too, not exactly as yours but similar. I also have Cervical dystonia and severe bilateral TMJ with arthritis in jaw joints too, carpal tunnel as well.
I am 47, severe disequilibrium most all the time for 3 years. Prior to that it was similar, but not to the extreme of last 3 years.
Last brain MRI was 3 years when it got really bad, and when my TMJ dysfunction got severe also. I was diagnosed with cervical dystonia 2 years ago.
My disequilibrim causes me worse problems standing still, talking, and in shower, which is nightmare. Eyes closed or darkness and I have to walk like a 100 year old. I over and under reach everything, which is why doing tasks, is hard...I can get through doing things, but doing them with that much imbalance and dysfunction if you can relate at all.
I have had brief whirling episodes sitting or standing where I have to grab anything near to keep from falling, those pass quick, but the constant disequilibrium is always there. ANY fine detailed movement, or arms out reached or head and eye movement.
As said I could walk from point a to point B, better then standing still. I believe loneman here had very similar symtptoms as mine, but hes not been back or answered the private message I sent.
Nothing against loneman, but kudos to you for coming back to update, even if its not good, but if someone else did find something, like loneman it could help others, and so thanks for coming back! If I ever find a fix for me I will do the same, after all these years its getting more and more depressing, trying to learn to live like this, which is not living is terrible. I no longer work due to all my diagnoses, I do not drive, I rarely go anywhere.....I used to work 2 jobs!
Escalaters heck no, malls, or anywhere alone, heck no.......I have tried to tell myself ( despite many diagnosis as described which can cause dizzyness ) that its anxiety, but the only problem with that is ..I had anxiety 24 years ago and it was nothing like this.
When I even think I can try and make myself believe that, I am constantly remonded THAT is not it, I wish it was....I could tackle THAT HEAD ON!
I have been off balance and dizzy too, not exactly as yours but similar. I also have Cervical dystonia and severe bilateral TMJ with arthritis in jaw joints too, carpal tunnel as well.
I am 47, severe disequilibrium most all the time for 3 years. Prior to that it was similar, but not to the extreme of last 3 years.
Last brain MRI was 3 years when it got really bad, and when my TMJ dysfunction got severe also. I was diagnosed with cervical dystonia 2 years ago.
My disequilibrim causes me worse problems standing still, talking, and in shower, which is nightmare. Eyes closed or darkness and I have to walk like a 100 year old. I over and under reach everything, which is why doing tasks, is hard...I can get through doing things, but doing them with that much imbalance and dysfunction if you can relate at all.
I have had brief whirling episodes sitting or standing where I have to grab anything near to keep from falling, those pass quick, but the constant disequilibrium is always there. ANY fine detailed movement, or arms out reached or head and eye movement.
As said I could walk from point a to point B, better then standing still. I believe loneman here had very similar symtptoms as mine, but hes not been back or answered the private message I sent.
Nothing against loneman, but kudos to you for coming back to update, even if its not good, but if someone else did find something, like loneman it could help others, and so thanks for coming back! If I ever find a fix for me I will do the same, after all these years its getting more and more depressing, trying to learn to live like this, which is not living is terrible. I no longer work due to all my diagnoses, I do not drive, I rarely go anywhere.....I used to work 2 jobs!
Escalaters heck no, malls, or anywhere alone, heck no.......I have tried to tell myself ( despite many diagnosis as described which can cause dizzyness ) that its anxiety, but the only problem with that is ..I had anxiety 24 years ago and it was nothing like this.
When I even think I can try and make myself believe that, I am constantly remonded THAT is not it, I wish it was....I could tackle THAT HEAD ON!
Hi Here4u2,
I been reading your last post and thinking about what you wrote. I dont know if you have read all of mine or not. I do have problems standing still at times...the shower i generally make sure that one arm is always touching the wall so that i can feel like i am grounded because closing my eyes makes me feel like i am falling. Mornings are the worst when my medication has worn off and i first get up i tend to have to hold on to things so i dont fall i have walked into walls and dressers and things...i have to make sure my floors are picked up as so i dont trip and fall. so yes i do relate to that. I take clonzapam and it seems to help with my dizziness i dont know if you have tried anything or not but i started out taking half a .5 mg pill once a day and increased as i went along till i got to a stable dose that allows me to function more normally. I am also now being tested on another pill that has to do with migraines to see if i can come off that pill and be on one thats not as addicting.
The whirling episodes you describe ...yes i get those... they are very brief and they totally catch you off guard suddenly you have to stop whatever your doing and wait till it stops. Strangest feeling ever that passes quickly usually. I have never had one last for more than approx 30 seconds. I am constantly off balance i call it the feeling of being half drunk.
One of the things that i noticed is i cannot walk down the center of a hallway i always am next to the wall. The eye dr is constantly having me walk down the middle and i always end up next to the wall and the end of the hall so i dont walk a straight line.
I also have the mall and store problems as you do and you are not alone. I have notice that when i am there i will tend to move slower the longer im there and im trying hard to take my kids where they want to go but all the people and the stimulation going on makes it hard for me and when people get behind me i end up stopping to let them pass i cant have them so close behind me.
Peanutt121
