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Ataxia Support Network

Another terrible day


#1

Therapy starts Tues. The rehab dr is no help. Meclyzine’ not working. Tomorrow I’m calling the dr who took care of me when I was an inpatient in rehab in 2015. I’m too weak to stand up today. It feels like God’s not listening. Thanks.


#2

I’m so sorry, Geri. Call your doctor. Best wishes to you. You’re doing great…


#3

Ok thank you. This is just a low point in the journey. The Good Shepherd therapists are highly skilled. Things will improve after I gxet started. I appreciate your support.


#4

Geri, Abba is listening. The most often spoken prayer in the Scriptures is “Lord, have mercy.” Breathe with that prayer. Calmly. Slowly. I’m also asking Abba’s mercy to meet your need…j


#5

geri, maybe i didnt feel as bad as you did but i went a whole month with 1 good day of feeling my norm and now im feeling my norm again for 2 days straight. it could have been the weather witch i doubt but it could have been the way ataxia acts too.pt didnt help me. stay strong


#6

Thanks everyone for being such good listeners and so supportive. I am determined to get through this with your help and lots of prayer. The good Lord provides and I do know he’s listening.


#7

I don’t know why there has to be ataxia or any of the other conditions that take strong, healthy bodies and take them on this crazy journey. I do believe that God has a purpose in all of this and He will take care of us and maybe even provide healing in our lifetime. That’s my prayer. God bless and keep you safe and encouraged.


#8

I was put on Acetazolamide ER 500mg. it is a generic for Zolamide. it worked to stop my vertigo and loss of leg function. It stopped my sons migraines and over 15 years of daily headaches.

it was my eye doctor at the Moran Eye Center who put me on this medication when I told her what I was going through. I have nystagmus, tinnitus, vertigo, loss of leg function/coordination, and am a fall risk. But after taking this medication, and finding the right dose for me, I am out of my wheelchair (that I spent 15 years in), I don’t need my walker, and only occasionally use a cane on really high stress days.

I hope you find the right medication for your situation dear.

JoAnna


#9

Thank you, Sophie & glowworm. Family doc is coming later this week. Maybe he’ll have an idea or 2.


#10

Hi JoAnna🙂 My Neurologist recently prescribed Acetazolamide for me. She thought it might help me with BPPV (Benign Paroxysmal Posterior Vertigo) which can be particularly disorientating when turning over in bed. I have the ‘usual suspects’ when it comes to ataxia symptoms but am still in limbo over the exact type, or cause. Current thinking is that it’s genetic, possibly an Episodic type ( I can sense periods of worsening, a pattern forms). Have you noticed any increase in peripheral neuropathy because of Acetazolamide? My hands and feet are much worse.

I’m glad to hear you’ve experienced such good results yourself🙂xB