Diamox

[Guest guest]

Does anyone know what someone should take if they're on Diamox? Last time I was

on it, I reacted strongly to it. I couldn't stay awake at all! I haven't taken

it since because it scared me and I'd rather live with my current symptoms than

sleep my life away. But, I may need to go back on it so am wondering if there's

anything to help. I was told taking potassium....

Cortney

[Guest guest]

I see a physiatrist for my pain management and I'm started to think he is more

knowledgable than my NL!! When I told my NL that Diamox was making me sleep all

the time it confused him and he wanted me to increase it again.

He wasn't the one who prescribed it, my physiatrist Dr. jay was so I waited till

I saw him to discuss it with him. He said it was making me sleepy because I was

taking too much and reminded me of the discussion we had went he first

prescribed it. He explains things very thoroughly in terms any one can

understand. This is what he told me:

Diamox was originally given to scuba divers and mountain climbers to prevent the

Bends from the altitude changes they experience. If I was going diving or

climbing he would know exactly how much to prescribe. But since this isn't the

case, it was going to be a matter of trial and error. He started me on 125mg

tablet and told me to start out at 1/2 twice a day but i may need to take less

or more depending. 1/4 tablet did nothing and there wasn't much difference

between 1/2 & 1 tablet so I went with less.

I tend to have lots of issues with meds & lots of times it's the rare side

effects. I of course looked up further info on Diamox. It said to take it on a

regular schedule. So this is what I did. I took 1/2 tablet twice a day at the

same times every day. I started to get very sleepy also. I did not have the

typical light headedness or any of the other issues with taking too much. All

the pressure and headaches were gone but I was sooo tired and sleeping all the

time. When I get that fatigued then I also get really bad body aches. So while I

was thankful it was helping I didn't see the point of taking it if it was just

going to make me sleep 20hrs a day.

I called the nurse, I'm not sure if she relayed my message properly, and decided

to try taking it just once a day at night. I figured if I could at least keep

things at a tolerable level without sleeping all day I would be happy. 1/2

tablet didn't do much so I took a whole tablet every evening. For the first few

days it seemed to keep things tolerable but then got less and less effective. I

partly figured this was because I had a visit from my 22 month old grand

daughter and was doing a lot of lifting, bending, and chasing her around. These

things have always been big triggers for me. But I just continued to get worse.

I went to see Dr. Jay and we came up with a new plan. And that plan basically

revolves around how I am feeling and my activities for that day. The base of it

is to take 1/2 one day and 1/2 twice the next day and alternate. If on a day I'm

only suppose to take it once but I'm having a bad day I take it twice. And vice

versa.

Also, I no longer take it at schedule times. I wait till I start to notice the

first signs of pressure building up and take it then. Because if I just take it

at a schedule time and my head is feeling good then it makes me very sleepy. I

have been doing this for about a week now and it's going pretty good. The last

few days have been a little rough but I think it partly weather related and

partly figuring out what other triggers are for me. Like caffine, certain

activities, and as I found out last night - alcohol. I very rarely ever drink

but decided to have a wine cooler last night - big mistake!

I know this is long, I apologize. There is no perfect dosing guide line for us.

And how much we need from day to day can change. It's really a matter of

listening to our bodies and adjusting as needed. If its making you sleep all the

time it's too much.

He also does NOT recommend for me to take the extended release form because my

body/brain doesn't always react the way it should to meds. A med that is suppose

to take effect within 30 minutes of taking, sometimes doesn't take effect for

several hours after I take it. It's not every time, but I never know when I'll

have that kind of reaction.

And looking at my growing list of meds I can't take, the majority of them are

delayed/extended release meds and meds that have to build up in your system for

a couple weeks to have the best effect. Not the case for me. And Dr. Jay was the

first doctor who didn't look at me like I was crazy when I told him this. He

said it made perfect sense because of all of my issues and was the one to say No

more extended/delayed release meds!!

Debbie

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