I probably blogged after I had phoned the hospital and came up with the likelihood that I would not be able to see the Cardiologist until May. I was gutted, as I really thought this time around there might be some treatment, or some help of some kind.
After doing my own research (something too many doctors still disapprove of, as though they are afraid of patients who know about their own bodies) I found out that I most likely have Postural Orthostatic Tachycardia Syndrome; POTS. I did a couple of poor man’s PoTS tests to check. Sure enough from lying down to standing up my heart rate whops up by more than 30 beats per minute and hovers over 120. If I am busy doing stuff like cooking, housework etc it can rocket up to 130s and 140s. So not a very serious POTs case but bad enough to make me feel horrible. This coupled with unstable hypertension and sudden onset of tachy at night leaves the question is this hyperPOTS or a combo PoTs or even Inappropriate Sinus tachycardia (IST) with Orthostatic Intolerance.
I don’t really think I have IST. My sitting up resting HR is 100+ usually but lying down it’s never more than 88. If I lie down long enough I can get it to in the 70s. I don’t lie down much in the day though, so my “normal” HR is around 100 to 110.
POTS is a complicated disease set and wherever I went to seek info the same thing was said “Doctors don’t know about POTS” and “Even most cardiologists know nothing about POTS”…
So I went in search of a specialist. In the UK, as far as I can see there are NO specialists in hyperPOTs. The world leader in hyperPOTs research is Dr. Grubb in the USA. Even dr Julia Newton who is a leading researcher in POTS in this country doesn’t tend to have much to say about hyperPOTS. She deals with the more common forms of either POTS with no BP changes or POTS with Neurally Mediated Hypotension(NMH)
I have found a POTS specialist at the hospital near me. He doesn’t have a background in hyperPOTS but he knows more about POTS than any other cardio I’ve ever met. The last cardio I saw dismissed me out of hand, even after admitting there were changes on my ECG, just because I have fibromyalgia.
So, it’s been a right game trying to get tests, let alone treatment.
Well the troops are rallying. More than one person is offering me the chance to go privately. I’ve just received money from two lovely friends and a family member is also offering to pay for me to see a cardio privately. I am so grateful for this help! I really want some answers, especially as hyperPots can be genetic, especially from mother to daughter. Not a nice thought at all!
Getting onto the hospital we find the POTS specialist doesn’t have a private practice!! Arrggh! He is spread so thin between University, NHS and some charity work that I can see why he might not need, or want, a private clinic.
With some badgering from dh, I’ve got an appt in March (much better than MAY – but leaves me worried I’ve shoved some other sick person further down the line).
So what is my plan of action?
I am going to request epinephrine and STANDING norepinephrine tests as well as standing dopamine test.
I also want them to check out baraflex failure.
I also want the various blood tests for Lupus. It’s shocking that I’ve never even been tested for Lupus despite the symptoms overlapping so much and having a child with autoimmune disease (type 1 diabetes) which should even tick the (stupid) NHS statistics box.
It’s very frustrating that so few cardiologists have any knowledge of POTS and the way it affects people. I am going to try and find out if there is a specialist who takes private patients. It would be good if there were dysautonomia specialist clinics – I can dream!
However bad it’s been for me, and however scared I might be of ending up bed bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of innocent until proven Irish in the UK) but Mr Millar had been bedbound with ME and Ampligen had him up and about with a life to lead. He has relapsed badly and he so very much wants something in place in case his sons become ill. I can relate to that. Perhaps you, too, are uncomfortable with hunger strikes, but Mr. Millar is in a worse position than most of us, he had Ampligen and got his life and a lot of his health back – and now the rug has been pulled from under him.
Keep him and his family in your prayers.