Forum Replies Created
-
Posts
-
Dear Ourfulhouse.
thanks for your help. Can you tell me more about Addison’s disease We thought it might have been part of the problem both girls had low cortisol levels but they tested them again and said they were alright we were not really convinced. I may have miss read something but I believed inter cranial pressure and Addison’s were opposites and you couldn’t have both. If you can , can you tell us the symptoms you were experiencing.
My second daughter seems to have adrenaline overdose for 3 weeks and then no adrenaline[energy of any sort] for 3 weeks. The Diamox helps with the build up of adrenaline but does not really help her when she is in the quiet mode.
Thank youDoes anybody know any thing that helps with absorption rates. The Diamox is defiantly working. The best tablets from Indonesia we have a very limited amount left. Is there any thing that can help our guts get the most from this medicine we would love to here it. Thanks again everybody.
thanks again Dr Diana.
Is it best to take them with food or not? My eldest daughter is now on Diamox. We have periods in the morning when the symptoms come back. she is already taking 4 x 250mg a day. Is it common to have these windows especially when starting the medication?
The only real tests we have tested positive for was low vit D. Is this the case for most people with this problem and are there any other test results we have in common. All 3 of us have elevated heart rates in a standing position. Only Lovina was diagnosed with pots. I know about the MRI in a standing position but we don’t have those facilities. Does the inter cranial pressure still show up when being treated with Diamox or do you have to go off it to make the MRI effective.
Thank you so much for all your helpThanks Diana,
Where we live is very isolated. It takes a year wait to see a neuro. In fact just finding someone to prescribe Diamox was a huge effort. She is on Diamox now just started but we definitely don’t have all the extra support. She ended up having three different personalities. Hopefully every thing will be okayIt only lasted one day. Now she is in a cycle. She will wake up normal fade into anxiety girl about lunch. Have a seizure around 3pm . Then take about an hour to return to normal daughter for the rest of the day.
Thanks Barbara,
We just need an understanding Doctor. I know what you are talking about every day I get into my car with the wrong car keys. It’s like my daily routine.Thanks Barbara,
You are spot on. The emergency Dr said said it was presenting like a seizure. The Diamox worked extremely well at stopping it. When she was on Diamox it was like she had come out of a comma. Could it be possible that the last year and a half was like a very long seizure. After taking Diamox did anybody have the same experience of waking up and not remembering much since they got sick? My child has no clear memories of being sick [1 1/2 years] It is like she has that lost period of time.Dear Dr Diana,
My Doctors were not happy that I gave my daughter Diamox. So they sent us to the emergency dept of the local hospital. The supervising doctor gave us some options , . He wasn’t sure why we were there. We had a problem and we had a medicine that was fixing it and sent us home.
My daughter said she was better and didn’t want any medicine and went to bed.
The next morning when she woke feeling like she had been a sleep for a year and a half. The memories of the last years were very foggy. She is going to go to school on Tuesday . The first time in a year and three months.Hello Anna,
One big thing I can remember is I had really bad crust on my armpit hair. It was as if all the toxins or something were coming out through that area. I know it’s really disgusting. It’s probably a bit hard to tell if you shave under your arms.I had a weeping appendix for 10 years. I had similar attacks to you but only a couple each year. How much do you weigh? During that time I weighed 55 kilos. Now I’m having troubles with pots.
When I had the appendix out I put on 20 kilos and was quite well for 15 years.My daughter and I both suffer similar symptoms. She has been diagnosed with POTS I’m still waiting for my tilt table test. We both have muscle twitches mainly in foot and hand muscles but can be in leg and arm muscles last up to 30 seconds. You can actually see it jumping. If I didn’t know better I would swear it was something crawling around under the skin. It seems to happen quite often .then won’t happen again for a month.
