Medication

Hi Dizzy!

My eyes don't track together either, and I have double vision. For how long did you try Diamox?

The cause of my SCA is currently unknown, but I tested negative for SCA6.

dizzyinCA said:

Would you say more about your vestibular symptoms? You are the first person to mention having this type. I have vestibular episodic ataxia, triggered by visual scanning. My eyes don't track together and I have double vision in the right eye. I tried Diamox, but did not get a good result.

Dizzy in CA


Buffalo Bill said:

5 Years ago, the Docs at Mass. General recommended Diamox (Acetazolamide) for my ataxia. It is a diuretic. They said in some cases of Ataxia, it actually reduces the frequency of attacks. For those that also have vestibular issues like me, it definitely reduced my dizziness; and keeps my head clearer and less inflammed.

I tried Diamox for several months two different times, without tolerating a therapeutic dose. It caused my blood pressure to drop 30 points when I got up, and dried out my eyes beyond what drops could replace the tears. I am seeing the neuro who prescribed Diamox 6/26, but I saw him between the two attempts to use this Rx, so if he had an alternative Rx, I think he would have suggested it.

Double vision came up for me long before the onset of other ataxia symptoms. I had vision therapy and reading glasses with prisms in 1993, which seemed to solve the problem. In 1998 I started losing my balance, and not being able to recover before falling. Then I had a severe flu virus that damaged nerves in my brain. After that, constant dizziness when standing became the norm, followed by nausea if I don't lie down. How long I've been up and visually scanning seems to determine how long it takes to recover from an episode.

Limiting the amount of time I'm on the computer or reading, alternated with non-visual activities (i.e., work out or clean the kitchen), helps me avoid episodes at home. I'm dictating on my iPhone, and learning a dictation program for my computer. That's helping keep me from feeling isolated.

How are you managing?

Dizzy


Hi dizzyinCA!

Before 1998 I only wore reading glasses. Then, I had Iritis. It was originally diagnosed as

Conjunctivitis. This caused one of my pupils to be partially stuck to the back of my eye,

causing double vision. I've gradually worked through all the strengths of prisms available,

including having an additional stick-on prism on top of a prism!

I experienced problems in losing balance from around 1990. That was in the days of

'keep fit' exercising, I couldnt do half the turns and twists the rest of the class did. Also,

I had to give up Badminton, because of the movements required.

I've had episodes of de ja vu, dizziness and nausea causing me having to lie down.

Some days I'm reasonably 'normal' as long as I keep my head on an even keel! But,

there's no telling how each day is going to turn out, a morning can be totally different

to an afternoon. I find it very difficult to plan ahead.

I sometimes spend too much time on my laptop, time simply runs away with me!

I've found it's much better to keep on the move, sitting in one place too long stiffens

everything up.

Feeling isolated is something I've got used to, it's not ideal I know, that's why I spend

so much time on my laptop!

Diamox sounds like it's worth trying, I don't know whether my family doctor will prescibe

it, or whether it would have to be prescribed by a Neurologist

best regards

Beryl

dizzyinCA said:

I tried Diamox for several months two different times, without tolerating a therapeutic dose. It caused my blood pressure to drop 30 points when I got up, and dried out my eyes beyond what drops could replace the tears. I am seeing the neuro who prescribed Diamox 6/26, but I saw him between the two attempts to use this Rx, so if he had an alternative Rx, I think he would have suggested it.

Double vision came up for me long before the onset of other ataxia symptoms. I had vision therapy and reading glasses with prisms in 1993, which seemed to solve the problem. In 1998 I started losing my balance, and not being able to recover before falling. Then I had a severe flu virus that damaged nerves in my brain. After that, constant dizziness when standing became the norm, followed by nausea if I don't lie down. How long I've been up and visually scanning seems to determine how long it takes to recover from an episode.

Limiting the amount of time I'm on the computer or reading, alternated with non-visual activities (i.e., work out or clean the kitchen), helps me avoid episodes at home. I'm dictating on my iPhone, and learning a dictation program for my computer. That's helping keep me from feeling isolated.

How are you managing?

Dizzy