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Pots or leak?
Posted: 29 April 2015 11:51 PM   [ Ignore ]   [ # 16 ]  
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Leslie,

Thanks for the info! SO sorry things aren’t going as well for you right now. I really hope you can get some help and relief.

I have taken hydroxyzine before and even though I’m hard to sedate (3 oral Halcion at the dentist & a pre-op shot in my IV that had zero effect on me and they all freaked out and didn’t believe me that I’d already had one) I’d be on the floor at that dose. It’s a wonderful antihistamine and I also found it useful for anxiety as well.

It’s pretty strong stuff, and that’s a big dose. It sounds like it may be difficult for you to find symptom control at this point. I hope you get some relief as soon as possible.

I really would like to try a mast cell stabilizer. I saw Dr. Driscoll’s video on the compounding rx for cromolyn sodium, I may check into that.

I remember in reading the forums that she said we needed the oral form of it or ketitofin (sp?) the same thing in the Zaditor eye drops. I wish there was something also over the counter or more readily available that could help.

I’m going to ask the geneticist when I speak to him again if he might be able to help with a mast cell diagnosis. I hope I could get it based on symptoms and without invasive testing.

Thanks for the idea of the ENT, I hadn’t thought of that yet.

I did have an amazing, kind allergist that still practices (all my meds were finally made otc, and our insurance is awful, so I quit going) so I’m thinking of going back to him. He knew I was sick years ago and offered me a referral to a large hospital if I wanted it.

I think he thought my headaches were from a female hormone imbalance though and he wanted someone to help with getting that in check. The gynecologist kept insisting the headaches were all allergies, so we knew he wouldn’t be helpful. I had Hysterectomy at age 22, and I did quit all estrogen at 34 due to a family breast cancer risk, I did contact Dr. Love’s foundation a few years ago and they said lowest dose I could tolerate till age 50, but I felt I just needed to not take it to minimize my risks. And I just won’t ever take it again-even though I know it does compromise my bones and there could be drawbacks.

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Posted: 30 April 2015 12:07 AM   [ Ignore ]   [ # 17 ]  
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Dr. Driscoll,

If one does not have head measurements from childhood, could a baby picture show or imply the head circumference issue?

Sorry to bother you but, one more question…about the papilledema…

From age 18 onward (I’m 39) they have found borderline to high eye pressure, I can’t remember the numbers exactly. But they were right at the edge and sometimes in the treatment range (but no one thought I needed treatment at that point).

With the “air” test it would be higher, and always well within the treatment range, sometimes high enough they were visibly worried. The last time it was and he told me that he would do one more test with the numbing drops and the measurement. It was right toward the edge of normal that way.

I was unable to tolerate eye dilation on my last exam (I know it’s important and next time plan to go to the place that does it with cameras or something instead of dilation) due to the vertigo nausea the visual distortion (even in dark glasses) gives me. Since it was for glasses they let me slide on it. I did get nauseated and dizzy even from the numbing drops distorting my vision. So I’m unsure if he would have been able to catch papilledema on that exam.

Both of my parents had glaucoma but no known complications (I suspect my Dad had EDS). My mother had the same type of high eye pressure since she was quite young in her 20’s. She did not tolerate the drops because the type they gave her made her feel faint (I suspect some POTS with her).

They watched her carefully and aside from ocular migraines (which she didn’t know she was having and they found during an exam) and age related cataracts-they told her that even with the elevated high eye pressure she had no damage or glaucoma issues, but still had glaucoma. (She should have taken the drops, but she refused. We tried to get her to and failed.)

My question, please-Could my high eye pressure not be regular borderline glaucoma but papilledema?

Is eye dilation necessary to determine papilledema? Or can the place with the camera device do it?

If it helps, to help you know what system I mean, my husband is diabetic and also is being watched for a nevus, and they did the full exam with the camera dilation alternative (and he’s good on both accounts).

Sorry to bug you, just an excited newbie who will try to contain herself!

Thanks!

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