Heart Issues: I've had to call 999 on... - Ehlers-Danlos Sup...

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Heart Issues

LoopyLou72 profile image
5 Replies

I've had to call 999 on advice from the GP. Just waiting for their clinician to call back. I've been having heart flutterings and dizziness since the early hours. I put it down to pain and tiredness but the GP wasn't happy. Xx

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LoopyLou72 profile image
LoopyLou72
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5 Replies

Hope it goes ok for you loopyloo 💐  Let us know please. 'M'

Barnclown profile image
Barnclown

Good: glad you & your GP are on top of this.  I forget, loopylou, whether you've been examined for PoTS (symptoms of dysaotonomia, syncope etc?)

Yes, please give us updates

🍀🍀🍀🍀 coco

LoopyLou72 profile image
LoopyLou72 in reply to Barnclown

I'm home. ECG was fine when it was done. Saw the consultant who said its extreme exhaustion due to bladder issues, which cannot wait until June, due to causing severe issues with sleep and likely to have caused the additional heightened pain which can't be managed with medication due to the body not accepting it. If the flutters start again I'm to contact the GP to arrange for a 24hr heart monitor but the heart is healthy. I need to rest and try to sleep when possible but there's likely to be little change until surgeries are completed. Xx

Barnclown profile image
Barnclown in reply to LoopyLou72

Well done.  Makes sense.  Sounds like you feel these medic's are doing their best...and I feel you are too...real team work!  Thanks so much for letting us know.  Hang in there loopylou...courage 🍀🍀🍀🍀

LoopyLou72 profile image
LoopyLou72

Update as promised and hope you're all well?

I attended A&E and they gave me an ECG but in the brief minute of the test there were no flutterings so all read normally. 5hrs later the Consultant on duty advised that it's likely to be due to my ongoing health issues so to see the GP.

Fast forward to Sunday and the flutterings and dizzy head were closer together and I'd been bleeding out of the bottom and ladies areas for two days and called 111 for advice as GP wouldn't see me. After a consultation with a clinician and GP from out of hours I was advised to call my GP Surgery first thing today, Monday, for them to arrange a 24hr heart monitor. Both A&E and out of hours felt it's likely due to ongoing bladder and bowel issues and possibly related to issues with the womb that I'm also awaiting diagnostic procedures on.

I get to today and call the GP at 7am but after 15mins of being on hold, and it still saying there's over a 20 minute wait to speak to someone, I had to hang up through fear of falling asleep. I called again at 8am to be told there were no GP appts or call backs and to call at 7am. Fuming I said my piece and hung up on them.

At 10am I asked to speak to the Practice Manager to make a complaint. In tears through pure frustration I explained that I had received no care from the services they offer and even following advice I couldn't get an urgent appt. she arranged for the senior nurse practitioner to call, who called back very swiftly, and announced that I was far too complex for a nurse and should be seeing a GP. I pretty much lost it at that point and tried to explain that was one of the reasons why I didn't want to speak to a nurse as I've been told on too many occasions that they can't help. She then booked me an appt with a GP at 2:30 today.

I attended that appt and the first thing the doctor said was 'it's only a 10 minute appointment so what are you concerned about the most?' and I said its two things as I think one is causing the other. Points discussed and she checked my blood test results from 6 weeks ago, when I'd first noticed some bleeding, and said they should have been discussed with me as I was borderline anaemic and my thyroid function is questionable so my current thyroxine medication levels may no longer be right. There were others that were out but the obvious ones can cause changes in the heart rhythm along with fatigue, weakness and sleep issues. She's now given me blood forms for tests tomorrow as with the continued bleeding, which is now much heavier, the chances are that I'm definitely anaemic and once the results are back they will then order tests to find the cause of the bleeding.

Annoyingly I'm pretty sure I know the cause and they'll be doing the tests that I've been requesting.

Although there's no quick fix I do feel very relieved that the flutterings and dizzy feeling are not in my imagination and finally someone is listening to me and trying to help.

Don't give up hope but always use the wild card if you're getting nowhere as no service likes a complaint.

Love to all and apologies for the long update. 

Lou. Xx

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