[Inafog]

could DI cause seizures? I have a daughter that is having issues with seizures and a neurologist has diagnosed her with migraines that cause seizures…partial epilepsy, but my daughter feels it has something to do with hydration. when she was little she has had to be put on IV fluids for dehydration many times, even recently she had to be given IV fluids.

I am not sure about whether it can cause seizures. As far as dehydration, I am using Nuun tablets in my water to try to make sure that I stay as hydrated as possible. It makes the water taste good and helps me to drink more as well. (Get tired of plain old water) I am seeing an endo tomorrow. I will let you all know if I learn anything of interest. I do notice that I am most dehydrated in the morning, and if I take my blood pressure, it is very narrow, like 89/78. And I don’t feel well.

[Inafog]

Thanks again. My situation is so complicated, because I have a CSF leak at the area where my neck is hypermobile. I had it patched for the 10th time about a month ago, and now have rebound high ICP…I have been trying to add salt as much as possible and using Nuun, but the high ICP causes painful headaches and eye pain. I would take Diamox to relieve that, but I am afraid because that accelerates my fluid loss… One time I lost almost 5 pounds from just 250 mg.

I just don’t no how to regulate them both, it is like they are fighting each other. I bet a fluid drip would feel good.

many many hugs to you for taking your time to explain. I am so sorry you ended up with so many complications from this. It makes me want to get this whole thing resolved quickly!

[Inafog]

Thanks so much for your reply!!!

I have a cyst on my pituitary that was found incidentally about two years ago, they followed that up with a repeat MRI and it showed no growth, so a closed case.

I feel so ill from this whole dehydration issue, and having trouble getting help. Distant doctor trying to order test which none here seems to do, and a PCP who is confused by my labs. No endo appts available until January. I am at a loss as to what to do! I can’t imagine waiting as long as you did to figure this out!

What do you mean by your demise? That does not sound good?

Hugs to you!

[Inafog]

Thanks Diana,

It is so hard navigating all of this. It seems like each week I have a new rare disease!!! My CSF leak is cervical , and I have been to a specialist and you would know me as nancy on the CSF leak website.. I have been patched about 10 times, but the patches hold until the glue dissolves. My leak is in the nerve roots of my 3 very hyper mobile cervical joints c4-c6. I do get some symptom relief for a few months each time, and then I go back for more glue. The leak is the worst of my symptoms…the dysautonomia comes in second , the gastro issues run a close third!

I was just so curious if the low WBC was a sign of all or this stuff…with your response, I think Mast cell is something I can just table for now.

Do you have any information about diabetes Insipidus? Or heard of it in conjunction with this whole EDS picture?

I read about your study, and I do have terrible GI issues, verrrrrrry slow motility, but I live in the NW. Does the study take place in Texas?

Thank you so much for being a warrior for all of us!

Hugs

Nancy

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