Strange things are happening/ Is this OI?

[Shell]

I've been keeping an eye on my BP and HR because of my suspicion I have a combo form of Hyperadreergic POTS. I've been taking the Ivabradine for two weeks and my HR has been coming down.
However other stuff has been happening the last three days. I/m breathless, chest pain is awful. Back pain up under my shoulder blades and neck swelling with pain in my jaw.
It's not swollen lymph glands it's the sides of my neck as though my blood vessels are swelling.

I'm pretty sure I had a TIA last month. Lost vision in right eye and power altogether in right arm and lost speach (in a different way to usual) for over 24hrs.
I am thinking of going to see the GP, but I would appreciate any thoughts.
I don't like doctors (even though my GP is one of the good
'uns)

 

[Shell]

I have just suddenly sprouted the clearest red-purple butterfly rash across my face!
Perhaps NOW they'll test me for Lupus!

 

[rlc]

Hi Shell, if you think you may have had a TIA, and lost vision in an eye etc, you must go and see a doctor ASAP, your BP is going very high, and you are getting high diastolic readings, another reason to see a GP ASAP, Breathlessness, chest pains and pains in shoulders can be a sign of heart problems, so again get to your doctor ASAP.

Take a picture of the butterfly rash as proof, it may go away before you get to the doctors.

I understand not liking doctors, but with the symptoms you are reporting it is important to see one, to find out what is really going on, it could potentially be very serious.

Take care

All the best

 

[maryb]

I agree with ric Shell - get yourself of to the doctor ASAP - take your sheet with you - very informative and he/she should act on it. Good luck.

 

[taniaaust1]

I hope you are okay.. I agree with the others.. you should of gone to the doctors when you suspected you had a stroke (haha i cant talk, I often dont go to one when Im having major issues).

From your records like that, one cant tell if you have POTS or not.. as with POTS it is diagnosed with the degree of shift one has from laying to standing (not moving) and there is no postural records on your sheet. If you want to know if you have POTS or not you need to have a tilt table test done or do the "poor mans test" for POTS.

 

[Shell]

Thank you everyone. it's been a rough few days but I am ok at the moment. Can't get a docs appt 'til the middle of April! Don't know what on earth is happening there!
Haven't been bad enough to warrent A&E - and too ill to cope with sitting there for hours, so I'm holding out and hoping ...

 

[justy]

Hi Shell - does your GP surgery not have emergency appointments. An appt in mid April would be a routine appt - you need to tell the receptionist what has happened and demand an urgent one. Failing that request a phone call from a GP - that always works for me - they ring the same day and then if they think its serious they will fit you in that day.

Sorry to lecture - im worried about you.
Hope you are keeping ok?
Justy x

 

[taniaaust1]

Surgeries (at least where I are) as Justy said, save appointment slots for emergencies (which arent hospital emergencies). Explaining what has happened should get you one. Many surgeries on top of that also have waiting list in which they can put a person in sooner if there is a cancelation.

Take care.

 

[rlc]

Hi Shell, at all surgeries even if you go in of the street without an appointment, they will make sure that anyone who goes in complaining of heart pain and breathlessness, is seen by a doctor as soon as humanly possible, because they are symptoms of heart failure. I used to know someone who worked on receiption at a doctors surgery, and they were taught that if anyone came in complaining of heart pain they had to let the doctors know immediatly!

Hope this helps

All the best

 

[Shell]

Thank you everyone for the support. It makes a huge difference.
Was seen as an emergency today; given nebuliser - got told off for not going sooner.
Now on steroids and she's upped the Candersartan by 4 mg to 12mg a day.
Have to go back in two weeks for bloods and under instruction to go back before then if anything else happens.

She also told me off for not telling the Professor, but he was in such a hurry and it's hard to talk when my voice is off and on and I'm so soddin' breathless.

I came off the Ivabradine for a couple of days to see if it was causing anything but nothing changed and so I'm back on it. Anyway it treats heart failure so perhaps I'm ahead of the game.

 

[allyb]

Hi Shell,
So sorry to hear you have had such a rough time. I have a very good friend with EDS III and PoTs who has been on Ivabradine for over a year (maybe nearer 2) she swears it has completely changed her life for the better. She isn't on PR but if you wanted to ask her anything; swap notes etc. I could give you her email address. Hope your seeing some improvements.
Kindly regards
allyb

 

[Shell]

Thank you justy allyb rlc taniaaust1 I am really going through a rough patch.
The GP saw me as an emergency (twice) and has adjusted my meds to get my blood pressure under better control.
I came off the Ivabradine in case it was the problem but it isn't so I'm back on it and my HR is down to aroun 115 on average which is much better.

However I can't breathe and I'm completely knackered. Had blood taken to screen for renal and heart failure. I tick every box for heart failure but as there's also some other stuff they are checking renal as well.
Back to the GP next friday and should be seeing the Cardio sometime in May (although I haven't had an appt yet).

Not posting here much - just knackered. But wanted to say thank you.

 

[rlc]

Hi Shell, glad to hear that the docs are investigating you properly, hopefully the tests will soon be able to find out exactly what is going on, and they will be ble to get you better soon. Until then take it as easy as possible!!! Thanks for letting us know how your getting on.

Take care

All the best

 

[Shell]

Update; more thanks for the support. I kinda need it right now.
Back on prednisilone. Having a month or so of frusimide to shift the horrible swimming pool I'm carrying around.
Candesarten increased to help prevent another TIA or a full stroke.

Bloods for renal and heart failure were negative. I still wonder about heart failure as I have every symptom listed, including some of the "less frequent" ones. There's a medical argument about whether a neg BNP really means no heart failure or whether all the other stuff should count towards the dx even with a neg BNP. Who knows??

I'm being referred back to a Lung Spec. The last one was a pillock who wouldn't deal with me because I have FMS and ME and we all know that's not a real pair of illnesses don't we. He basically had me down as "fat lazy middle aged woman in a wheelchair".

Bloods today for Lupus and other stuff.

Totally wiped and beginning to feel that awful - why am I going through this stupid process feeling. Must not give in!

It's sunny. That's nice.

 

[ahimsa]

Bloods for renal and heart failure were negative. I still wonder about heart failure as I have every symptom listed, including some of the "less frequent" ones. There's a medical argument about whether a neg BNP really means no heart failure or whether all the other stuff should count towards the dx even with a neg BNP. Who knows??

Did they do an echocardiogram or x-ray or any type of imaging of the heart?

I'm being referred back to a Lung Spec. The last one was a pillock who wouldn't deal with me because I have FMS and ME and we all know that's not a real pair of illnesses don't we. He basically had me down as "fat lazy middle aged woman in a wheelchair".

Oh, Shell, my heart goes out to you. I hate it when doctors/nurses/technicians treat patients so badly.

Sending you some more HUGS!

.... and sending an angry Devil to any disrespectful doctors out there!

(Or maybe I should send a Ninja instead? To sneak up on them?!)