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Due to blocked CSF flow I may need Diamox


Guest Julia59
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Guest Julia59

Due to Cervical/cranial instability/possible cranial settling, chiari I, congenital cervical spinal stenosis--and retroflex odontoid----I have a block posterior cerebral spinal fluid flow, and after the traction I will start a trial dose of Diamox.

Diamox is a diuretic to get rid of extra body fluids. I would think that would be contraindicated with someone that is diagnosed with POTS----who needs fluids.

A potassium supplement will also be given.

It looks like things are moving along in the symptom department. My legs are getting weaker and it's getting more difficult to walk---and my balance is getting worse. Headaches are more frequent at the base of my skull---and basically an over all body weakness. I'm also getting a lot of ear-aches which is common with these type of problems----blocked CSF flow.

I had near syncope in the store the other day after just picking up a few items. I have not really had this problem before except in the beginning of my pots---and this was a little different. Very sudden and what I would think if I actually passed out---it would have been considered as drop like attack. I was only at the store for maybe 10 minutes.

I already did the traction once, but Dr. Bolognese wants me to do it again. He wants to know how I feel IN the traction----not AFTER. This time i'll only do it about five times. I am going to see if a PT can do it for me---so I can make sure it's done right. I was a little awkward with the first traction. I feel quite a bit worse after the traction---more unstable, so i'm not real happy about doing it again.

Tomorrow i'll see a new pots doctor to get his opinion on things. I'm primarily going to him to get a cardiac workup to rule out my chest pains/fatique are not heart related. These symptoms are probably due to the pots and brain stem compression----but I would rather be safe then sorry.

What do you all think of the DIAMOX-----------------------kind of scared to take that drug especially with everything that is going on.

Take Care,

Julie :0)

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Hi Julia,

I am not knowledgeable about the neck issue but I know that if I take a diuretic I will faint within 2 hours. So I know that it makes me worst. I have hypovolemia. Do you know if you have hypovolemia? I would check with Dr Grubb or his associate to see what he thinks of it.

Ernie

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Hey Julia, you might want to try to contact Dorothy B.--I know she's had lots of experience with diamox. For a time, I think she may have been on diamox AND florinef. Her email address is still the same one she's always had on aol.

Catch you later, Nina

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Guest Julia59

Thank's Nina,

I have spoken to Dorothy about it on the phone actually. She said it does work to help with the blocked CSF flow----but the side affects were pretty rough.

I also keep in touch with two other people who have really been helpful in this latest **** i've been in. I have joined the WACMA web site for people with chiari---or lower hind brain problems, cranial instability---yada---yada---yada.

I know some of my posts have some information not related to pots---and that some people may not know what the heck i'm talking about. That is the big reason I have joined the chiari support site. However, if it weren't for this site and NDRF I would have never learned about these other sites---at least not for a long long time anyway.

I've grown close to you people as you are all true treasures. :)

The things i'm finding out about cranial/cervical instability are not nice---and down right scarey----with symptoms such as sudden death---due to the brain stem involvement. I'm not saying this is me---it's just that people who have diagnosed with the same problem as I have been told this is the case for them-----a risk of sudden death, probably a low risk I hope.

I am still working with Dr. Bolognese----but I must say I have trouble taking this all in. :D It doesn't seem real-----to have all this going on at once. And now with Dr. Bolognese suspecting possible cranial settling----well that's just another punch I don't need. That is just another ingrediant I don't need added to the mix.

My mood has been kind of down, basically due to all the unknown----and a little fearful. Tuesday I will start traction again----but this time with a physical therapist to be sure i'm doing it right. I did the traction at home like Dr. B suggested, but it was a bit awkward, and i'm not sure I did it correctly. I will do anything to avoid the invasive traction. I have not heard nice things about that.

Two screws in your head, then weights pulling on those screws can't feel very good. Dr. Bolognese explained that this may be the only way to find out if my symptomology is from the above mix----and not the POTS itself rearing it's ugly head. He said the pots can be from any of the cervical cranial/chiari conditions I have. But on the other hand it could be separate.

I'm going to bed----thank's again.

Julie :0)

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