it seems we suffer from a variety of symptoms. i struggle with dizzy nausea almost daily. triggers seem mainly to be head eye movement. i have not driven a car or rode a bike in 15 yrs. i do one 6 mi. round trip car ride a month, except if i have va appt. cannot reliably ride in car and function afterward.
typing, scrolling, scanning with my eyes, sorting paperwork, looking for misplaced item, anything like that results in crazy suicide inducing dizziness, spactacular vomiting and very low blood pressure. if it happens around other people, they take me to e. r., who give me several bags of saline and send me home a few thounsand bucks in debt. alone with my puke bucket is more cost effective.
it is very threatening to me. frustrated, i destroyed a new cell phone last month, the sliding features, small print and the fact that it was a broke p.o.s. out of the box, totally frustrated my efforts to get it activated. though i live with family, no one will help me with these issues.
as far as "support systems" go, mine sucks. i got chores, i have to cough up most of my va pension or go hungry. family not interested in helping me get back on my feet, i'm free money as long as i'm too broke to move out.
I, too, live on VA pension. I live 2000 miles from family which is my youngest sis who has schizophrenia and is now developing symptoms of ataxia herself, so she is not able to be supportive. I have one friend in this town who was my girl friend at one time. She is the only one who is supportive of me and I'm grateful for that at least. But for the most part, I live and struggle on my own most of the time.
I get dizzy too. I use a walker else I would really be in bad shape, but still need help in getting around. My only real companion is my t.v. and that can get really old too. Boredom and loneliness are my worst enemies.
I wish I at least had some family around or nearby that I could talk to from time to time. Even if it meant giving up most of my small paycheck. Still, I'm thankful for what I have.
Sounds like you either have to accept the family you have or strike out on your own and in our situation, that's no easy task. I empathize with you…I really do. I have to rely on the system for help and even have groceries and meals delivered.
Yet, there is always someone who is worse off than we are. I try to count my blessings and move on as best I can. There is always something to be grateful for. Try and stay positive. Have you tried discussing your feelings with family?
Hi. Have you tried Dramamine? I take 100 mg per day to keep motion sickness in check. I have suffered with motion sickness on a daily basis since 1989 and it is very effective for me and very cheap!
I can relate to you. It’s the worst! It was one of the first symptoms I had. Hopefully you will find a way to treat it. I will be thinking of you. Good luck in your search.
You may want to find a physical therapist who specializes in neurological problems. Ask your neurologist to recommend one or check the internet for someone in your area.
An ENT also could help figure out if it is an ear vestibule issue, in which case vestibular exercises can really help, sometimes cure the problem. If the problem is from cerebellar issues, then the neurologist might recommend some medicine for relief .
Best wishes to you. Hang in there, it is a tough road.
I am sorry you are having a difficult time.
I noticed you had some similar issues as mine and when you go to e.r. they give you fluids and you feel better.
I have had this same reaction with the fluid intake often I will take in 1-3 bottles then I feel better.
The summer heat causes me to be sick more.
This time I am trying to drink lots of fluids, my thinking is my dehydration might be making my symptoms worse.
Hi, Have you tried meclizine. It's over the counter. If you see a doctor you may have to try valium or klonapin. You may be dealing with several things but I wouldn't rule out mienere's disease.
Sorry to hear your family isn’t supportive. I too have nstagmus and daily vertigo which I consider the worst part of ataxia although mine isn’t as extreme as yours. I did try acetazolamide twice but all it did was make me feel groggy and ruined my ability to function. It may be contributing to the problem instead of helping it. I say that because my vertigo increases substantially when I’m tired or feeling weak. A friend of mine who has miniere’s disease with vertigo very much like mine is taking daily doses of Claritan D prescribed by her doc to keep her vertigo at bay. This has Pseudoephedrine which is a class of amphetamine. It clears up inner ear congestion and gives you a pick me up. I’m tempted to try this if it isn’t too much for my heart. other antihistimines that I’ve taken to clear up allergies have had a positive effect on my vertigo. Flonase in particular. My neurologist has been useless when it comes to dealing with the vertigo/nstagmus aspect of SCA although a neuro-Opthamalogist I see has been invaluable. They’re hard to find. Can you have a VA pension and receive social security disability also? You might check this out.
I had similar problems. But after regular appointments with Mr Bremner in UCL London my whole world is so much better. Not only medication to steady the muscles around my eyes (gabapentin) but also a great explanation on what is happening to me and how to cope with it. The new stratagies really helped me. He is a 'neurological opthalamist'
I am lucky to have my Mum, Sister and Brother in law 30 mins drive away. I told my 2 daughters to grab their life with both hands and enjoy. So i don't expect much from them. It's just me the dog n the cat here. I don't mind living alone. I can keep myself amused. Good luck. Take care.
Check on community resources. perhaps someone can talk your family into reason or find you another living situation. the stress they provide counters whatever help (food?shelter?) they are giving. there may be more help for a person on their own than a live-in situation.
and dramamine can 'dry' you out but that class of drugs is worth a try. meclizine helped me when I had severe vertigo (now very mild)
My symptoms started with vertigo and physical therapy helped a lot, I am not experiencing it like I was in the beginning. Only occasionally when I'm in the bed I may experience dizziness.
My understanding is dizziness comes from excess fluid in the skull because of Atrophy of the cerebellum. Has anyone heard anything about the possibility of having a shunt placed in the brain to drain fluid to a more normal level-much like they do for water head babies?