Hello Folks , just thought I'd send you an update from a very wet and windy North Wales.
I finally received a letter from the Cardiology Department this morning , five weeks after my follow up appointment , confirming POTS . Not that anybody reading my posts on the forum would have been suprised at me being POTTY , but even my heart rate was taking exception to me doing silly things like standing still or sitting up .
It also turns out that my Cardiac System was clearly so jealous about the rest of my body getting all the attention for its various uncommon Chronic Conditions , that it has decided to have not one , but two rarer Heart Conditions of its own. Along with Postural Orthostatic Tachycardia Syndrome , I also have a case of the SANRTs.
I did wonder at first whether my Cardiologist was suffering from Dyslexia and had gone into cahoots with the Neurologist and had tried to diagnose me with another illness based on a Lewis Carroll book.
I had already been diagnosed with Alice in Wonderland Syndrome , a form of migraine headaches that makes you see things as bigger , smaller or different than what they really are . Now , perhaps my Heart Doctor, did not want to be outdone and wanted to go Hunting for the elusive SNARK around my circulatory system .
Having a bunch of much loved Children's Characters racing around my body could explain a few things.
The aches , pains , creaks and groans in my body and various whizz bangs in my head and ears could be mistaken through a stethoscope as the soundtrack to an episode of 'Wacky Races' . I should have guessed years ago really that I could have been Medically misdrawn by Hanna Barbera as if I laugh too heartily I have always sounded like that lovable sidekick to Dick Dastardly , Mutley.
Yet no , the spelling was not Wonderlandian and SANRT stands for 'Sinoatrial Nodal Re-entrant Tachycardia' . Yes , Auntie Bee is trying to outdo herself again and has managed to get another unusual Chronic Condition that hardly anyone has ever heard of!
This could be part of the cause of my Dysautonomia and POTS and it involves a constant tachycardia between 100/150 beats a minute caused by a possible malfunction or malformation of the Sinus Node which differs from Atrial Fibrillation and other Atrial Ventricular Tachycardia issues because of the difference in pattern change in P Waves. Unfortunately , the drug I am taking for POTS may not be enough alone to get this in order , which is probably why I'm still stuck on bed rest as my circulation has concluded that the en trend colour for hands and feet this Winter should be Alien Blue ( at least if I get asked to play Jack Frost in a forthcoming Christmas Panto I won't need any stage make up , there's always an upside!)
I'm back for another 24 hour ECG next week , although I think the good old Blood Pressure Monitor might need to be dusted off too so I can finally put this set of symptoms to bed , and then hopefully I can get up off it .
I would be interested to hear if any other GCA/ PMR sufferers have been diagnosed with SANRT , or POTS , too , and if the symptoms began at the same time as the GCA/ PMR , or sometime after beginning medication.
I will , of course , keep you all in the loop as things progress , and if you have any tips about how I can stop adding to my ever growing list of Uncommon Illnesses and Syndromes I would greatly appreciate it . Although extreme treatments suggestions like jumping off Menai Bridge , or chopping off my head ( an injury which , despite Nannys insistence on 'Blackadder' , cannot be fixed with a bit of ointment ) will be answered with a Paddington style Hard Stare. 😋😂😂😂
Unlike my month long Cold on the Chest , kindly donated to me via a Kiss of Death from my eldest daughter , I'm pretty sure SANRT is not contagious , but I'm not sure the ' Bin of Doom ' agrees and has decided to suffer from it too.
As , in the high winds last night , it took the opportunity ( while my Family were away of course) to suffer yet another Psychotic episode , or sudden case of Acute Anxiety Disorder , fled across the drive , into the back garden and decided to try and climb the ornamental cherry tree. The shudders and screams of the shivering black devil were so loud that I was forced to leave my bed at 3am in order to save my neighbours from a night of Hell and go outside to retrieve it.
I am on that many drugs now that I probably could have rolled over and slept through it as even the Pred induced insomnia is finding it hard to hold its own in light of all my new magical and mystical symptoms but the guilt of keeping the rest of the village awake all night was too much to bear.
I prodded it numerous times with a damp stick and shone a torch into its eyes just to make sure it was willing to bow to submission. I definitely did not want to be nearly eaten by it a third time , especially in the middle of the night and with the others away , I've tempted Fate enough. It seemed to realise that I was getting enough abuse on the inside and decided to behave itself more sensibly for a change , so I was lucky enough to get it back in its spot quite quickly and returned , somewhat soggily , to bed.
Well , there's another unusual exercise to add onto my physiotherapy Activity Diary , it can fit quite aptly in the list of things that trigger moments of Acute Joint Pain , like trying to change the case on my extra large body pillow , putting on my compression clothing, and the multiple extra trips to the toilet required by the amount of fluids I have to drink to help reduce the POTS.
Who knew Pacing Yourself with PMR and the Rest would actually mean taking rests after rescuing bins , wobbles for a wee, and putting the sort of tights on that would put Yellow Bluebells Tiny Wedding Spanx to shame. At least I haven't fallen into a washing basket ..... Yet !!!
Hope that everyone is keeping warm and above all cheerful , no matter what horrors your PMR , GCA and other Chronic Illnesses are throwing at you.
Big hugs to all , and keep looking for those Silver Linings , no matter how small they may be , love Bleary-eyed aka Auntie Bee xxx
ToolMart Left today
new to this
Have not been feeling well for a couple of weeks - is this PMR/ steroid use or something else?
your history of PMR, GCA
