LynnieC

Thank you all. Some very useful information. Dizzygirls - they have done 2 lumbars and all results have been within the "normal range". I will keep pushing on ....

My (almost 14yo) daughter went from being a happy, social, sporty, smart, fit, beautiful, life-loving girl 6 weeks ago to a shell of herself. It started with a constant headache which turned to "spikes" of intense pain in her head when she stood up. She has had all of the "standard" tests to rule our cancer, aneurisms etc., has spent almost 2 weeks in hospital and is not getting better (is getting worse if anything). The doctors have gone the migraines/puberty/ anxiety/stress path and have had her on Endep and Topamax for the past month. We have had frequent trips to the ER with them giving her strong IV pain killers and her lay down. She usually sleeps (passes out) for a few hours and the "spikes" subside so they send us on our way. All of the tests they do are while she is laying down so she is OK. She is also sleeping through the night without spikes so they are questioning her authenticity (and won't accept because she is laying down). They will not listen that this is not her. I know my daughter and everyone who knows her have said that is not her and can't believe how quickly she has changed. I am concerned she may get depressed from the lack of anyone listening to her and not getting any relief of help. It feels like we are being treated as "crazy". I have started taking a friend with us to all appointments for this reason. Other symptoms are dizziness to the point of almost passing out, feeling hot (even when everyone else is cold, but has a normal temp), sweating (especially during spikes). She is very noise sensitive when she has the spikes and light phobic as well. Her appetite is fine and she has been drinking a lot. Tests showed slight dehydration (even though she always drinks a lot of water and had just received a bag of IV fluids) and very mild anaemia. Her resting heart rate goes from around 60 to 150-160bpm when she stands. I suggested POTS as an option to the hospital doctor who took her pulse lying down and then standing and said it had increased a lot but that could be because she was having a "spike" at the time and was very dismissive. She said the only way to know would be to do the tilt table test but she doesn't think that is warranted by an abnormal pulse test. I have been keeping a record at home of her pulse and vitals (taking them at various intervals) and it is still the same. I plan on taking this data to our next appointment. We have tried doctors, hospitals, physio, massage, chiropractor, wellness centre, acupuncture with no relief. Last week, our GP put her on 1 x 100mg Asprin per day and 30mg of Cardizem 2 times per day. I have also been giving her extra salt in her diet and electrolyte drinks. These seem to have reduced the frequency of the "spikes" (which has been wonderful). Does anyone have any suggestions as to what I should do next? We are in Australia and I don't think POTS is as well known over here. I appreciate any help or advice you can provide as she has missed 6 weeks of school and I want my beautiful girl back :-(