please help

Hi darling have you been seen in neurology? If you live in the UK the best place to go is UCHL in Queens Square London. Ask you GP for an urgent referral. If you feel faint don't worry they will send a hospital car to collect you. They are the top neurology hospital and you should go there. I was under a delightful lady Consultant Neurologist Dr. Hagen. She was very kind the hospital is very clean excellent choice of food. 

You certainly sound absolutely the obvious POTS type patient so please do get help ASAP I know I've been there and you really do need help. Don't bother with anything look up University College Hospital Autonomic unit in Queens square get there phone number. Then ask to speak to your GP tell him you have POTS and ask him to ring the phone number or fax them! 

Hello Samantha, I am no expert- just a guy with similar problems-autonomic dysfunction seems to be random and irratic and can be different for everyone.

I have been mis-firing for several years now with feints and pains and days when I am convinced Im dying. .But... im still here... and get by. Diagnosis took 3 years. Midodrine helps stabilise things but its not perfect. I was previously very fit cycling up to 100 miles per week and  it came on for no reason that anyone has yet defined.I am now  having councilling for Health Anxiety to curb my obvious concerns-

I hope it helps you to know that you are not alone.Theres loads to read on the web.

Rob

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Hi again Samantha,

Dont know why the link was removed-just a post by someone who told a good story.

To answer your question more specifically-yes chest pain has been a feature-it feels like a belt pulled tight around my chest under my armpits. It happens when I stand still for more than a few minutes.

Rob

Samatha,

It has been a very difficult thing to come to terms with for me, the autonomic system is after all the very meeting point between mind and body. For me the anxiety lay in not knowing whether my symptoms were physical or mental. Now with a firm diagnosis it makes sense to deal with the anxiety that has developed along side (the neurologists idea after I cried bucketsfull in front of her). I guess what im trying to gently say is that we have to learn to live with this crap hand. I have learned recently that health anxiety can produce very similar symptoms to the actual condition and obviously exacerbate them. Im not there yet but maybe by adjusting expectations I can come to terms with it. elleandtheautognome is a page by someone who has.

best wishes.rob

Hello again Samantha,

It pains me to feel your distress. I have been there and Im sure many have also. 

My only advice is - dont be afraid to ask for help. If this horrible condition had a name that people recognised they would be out there fundraising and dishing sympathy in buckets full. But the fact is this condition is a mystery to most proffessionals let alone our family and freinds. And yet it affects every organ and therefore every aspect of our life, mentally and physically.

But people are out there who are paid to listen, talking helps even if its just venting at the crapness of it all. Use them if thats all the system will provide. You dont even need to be referred you can self refer on line.

Rob

Hi Samantha, it's pretty common actually for young women to get POTS and not a lot of doctors know how to treat this condition appropriately.  Your POTS may have been a result of blood loss during your surgery.  Mine started after childbirth but only began about 5 months after when I had lost all of the water weight from pregnancy and stopped breastfeeding, so it baffled everyone for a while.  Like Rob said, the medications used to treat POTS (Florinef and Midodrine typically) are not 100% effective for most patients but they work for most people to regain a semi-normal level of functioning, and semi-normal is better than nothing!  Your POTS may be a causative factor of physiological symptoms of anxiety.  With a form of POTS called neurocardiogenic syncope, when you stand up and your blood pressure drops your body releases a ton of fight or flight hormones in an attempt to raise your heart rate which is supposed to raise your blood pressure back to normal.  Our baroreceptors don't always listen to the message those hormones are sending but the hormones keep flooding to get the BP up regardless of whether they are effective in doing so or not.  All of those fight or flight hormones produce the same physiologic symtoms as an anxiety attack, not to mention worrying you're going to drop dead any minute can be *slightly* anxiety provoking!  Call your doctor and request the medications for POTS, hopefully they will provide you with some relief and you will see a reduction in your anxiety symptoms once you can stand up and walk around with a little more ease again.