just a bit scared
Posted: 16 May 2015 09:40 PM   [ Ignore ]  
Total Posts:  22
Joined  2015-05-16

  My daughter has been watching your videos for some time.  At the moment my daughter and myself are being treated for low bloodpressure aka low circulation.  Lovina is on 5mg bisoprolol and .2mg fludrocortisone. I am on .2mg fludrocortisone. We are both new to this medicine only 1.5 months.  To start with it made us both a bit more active.  Lovina’s heart rate on standing is now the same.
  Brief history I started feeling unwell at age 8.  Spent 6 months in the sick room at school.  The only time I ever felt really well that I can remember happened during this time.  I jumped out of bed feeling great and wanting to go to school.  My parents told me to look in the mirror and told me go to bed I was covered in measles[maybe my immune system was attacking the measles instead of my body].  I struggled through school .  I wanted to do sciences but my memory was terrible so it was art and histories.  I just passed high school to scrape into teachers college. The lecturures read my assignments and told me it wasn’t the place for me but I stuck with it.  I was also
was going through pubety at 19 which made it socially challenging.  I also weighed 55 kilograms [I am 6 ft tall]  I was called Mr Punniverse.
  I finnished colledge but found out I was the best teacher in the world for the first 6 weeks then my efforts would stop.  I could only really teach as a substistute teacher.
  When I was 28yrs I had an appendixs attack and had it removed.  Within a week I had put on 20 kg without changing my eating habits and felt so much better. I just happened to marry my wonderful wife at this time.  I even taught full time after the op.
We had three wonderful children Lovina was literally the smartest child ever,  Erica was the nicest and Yasmin was the bravest.  I was the happiest person I could be.
  Now Lovina hasn’t been to school for 1 and a half years [16yrs]Diagnosed with Pots lying 80 vertical 169bpm also has brain fog and anxiety . Erica has manic like episodes, for 4 weeks really loud and sometimes uncontrollable, the next for 3 weeks she lays on the couch doing and saying very little. No pots but 95bpm lying and 120 vertical.I can still just do subistute teaching but am having more and more days off the last 2 years just lie in bed when not teaching.[but only 6 hours sleep a day]
  Our specialist believes blood is pooling in legs, less oxygen is getting to brain causing symptoms like brain fog .  The brain shuts down functions due to lack of oxygen.  Brain thinks it’s dying so releases large amount of adrenaline.
Lovina did react to H1 and H2 all her symptoms went away for 3 weeks but then returned.  When I take them my bright red neck turns to a pink color but doesn’t go away.  Both Lovina and I have sneezes that could knock down small buildings.  I did feel 100 times better when I took Olanzapine[could do every thing but still felt sick] This lasted two weeks then stopped working.
  We live in a remote part of Australia called Darwin it is tropical and very hot[currently winter min 18 degrees to max 32 degrees. I can’t find any doctors that want to discuss t cells.  In fact it was only by chance we found pots before that it was all in our heads.
If this story sounds similar can you let me know.  I am worried for myself but I am petrified for my children.
And yes we have vertical lines on our finger nails.

Posted: 20 May 2015 10:33 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

I’m so sorry to hear of your suffering and understand your fears. You are certainly not alone, although it may feel that way. Do you believe you have symptoms of high intracranial pressure, too? That can be related to histamine problems and inflammation (and redness implies inflammation). Have you been able to try Diamox or any of the other suggestions in the book? I hope it can help you start to peel back the layers of this beast of a condition. Gentle hugs…


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese