Pistol

My local homecare needs a permanent access to do home infusions, they will not do sticks. I never looked into IV companies but I have a list of national IV suppliers covered by my insurance. I can check with them. Unfortunately I live in a very rural area so they probably don't come out here. I will check into a PICC line though, maybe my PCP would agree to that. Thanks!!!

I do not know what your poor daughter has but I can only suggest you NOT to go the anxiety route yet. That is usually the diagnosis of choice when they don't know what else to do, especially with teens. Is it possible for you to see another Doctor? Does she have a pediatrician? My PCP did not know anything about POTS but never dismissed my symptoms. I also have a teenage daughter and know that they go through a lot of psychological changes at this age but the symptoms and findings in her case should be investigated. I wish you good luck - just keep fighting!!!!!!

I had the exact same symptoms and was diagnosed with hyperadrenergic POTS . I had to go through 5 cardiologists until someone finally told me that I have POTS. But I had to be seen by a specialist for POTS that checked my adrenalin levels (which were extremely high upon standing) before I was finally diagnosed. Since then I have had many trials of meds but am a lot better controlled as long as I am living within my limited abilities. When you see the Dr Monday make sure you mention " hyperadrenergic POTS". It has a different mechanism than the more common form of POTS as it increases the BP as well as the HR upon standing and is caused by abnormal adrenalin-surges ( do you get shaky, cold, clammy, weak ... ?) I also pass out a lot, maybe your "sleeping" is actually syncope (passing out)?

I can relate to some of your symptoms but not all of them. I have hyperadrenergic POTS and my BP fluctuates between high and low. I also have the problems with tears (dry or abundant), dizziness, nausea off and on, breathing problems, balance disturbances. The other problems you describe I do not have. But everyone is different. Hve you been evaluated for Dysautonomia?

Unfortunately I am treatment resistant. I am on a lot of meds for 8 years and can usually manage as long as I live within my (ever changing) limits. When my symptoms get triggered there is no real Alternative other than fluids. But yes - a port requires minor surgery and in addition may cause blood clots or infection anytime it is accessed, therefore the PCP's cautioned approach. However - I am aware of this and feel that my life would be so much easier to maintain a certain level of balance over if I could do IV fluids at home as soon as I can sense that I need them instead of waiting when I can get ahold of my PCP.

Hi - this is my first message. I am trying to convince my PCP to allow me to have a port for IV fluids. I need them often and need to travel one hour each time (one way). I have given him articles and a list of pros and cons but he still is not sure if the benefit outweighs the risk. I explained to him how much it would increase my quality of life (I cannot drive due to syncope, am disabled from POTS and getting fluids at home would give me some control over my symptoms). In addition when he is not in the office and I need fluids I have to go to the ER and many MD's there do not understand why I need fluids when I am not dehydrated and can drink. (Answer is my BP and HR normalize, syncope and seizures stop and I can actually walk!!!!) Does anyone have any advise on what else I can tell him? Has anyone else been in this situation? I would really appreciate any comment. Thanks!