Difficulty getting diagnosis

EllieMay1969 · 06-10-2015 12:19pm

We have had further development in our daughters condition. After years of trying to get the tilt table test done it finally happened last week. A week ago today, was the scariest day of my life so far. My daughter was on her 90th day blackout free, on her new medication, so I really didn't expect her to have one during the tilt table test. For those who don't know what this is. Basically you are strapped onto a table/bed hooked up to an ecg and blood pressure monitor. They also put a line in so if they need to administer any meds they can do so quickly. The first 10-15 minutes of the test you are lying down and then you are tilted to approx 70 degrees for a further 45 minutes or until something happens whichever comes first.

The first 15 minutes was uneventful, although I did think her heart rate was a bit fast since she was just lying there doing nothing. However there was a doctor in attendance all the time so I presumed if that was of concern he was taking notes. Then the table/bed was tilted and again we watched and chatted. All was going fine. She had been instructed to let the doctor know if she felt in any way unwell. ten minutes left in the test and as I said I was sure nothing was going to happen.

I was watching her heart rate and it fluctuated between 85 and 120 bpm. I was also watching her for any signs that there was anything wrong. Then the following events happened in seconds. Heart rate 88bpm, she says "I don't feel so good", heart rate 66bpm, I ask if she is ok, no response, head falls to one side, heart rate 45bpm, alarm sounds, nurses shouting instructions, heart rate 34bpm. Later when all was calm and my daughter was back from her blackout. We were told her heart dropped to 26bpm. Now we know why she has been blacking out for almost 4 years.

The lesson her to anybody who feels they are being fobbed off and not taken seriously...stick to your guns...keep looking...eventually somebody will look properly and find out what is wrong.

Pretzill · 06-10-2015 9:23pm

Jeepers Ellie May that sounds shocking for your daughter but I suppose also that at last she's on the right track to discovering what's wrong. Did they give you a diagnosis?/and is it cardiac related?

Whichever, I do hope that they can treat her now and the blackouts will diminish - such a frightening thing and such a long wait to get to the bottom of it all -

EllieMay1969 · 12-10-2015 9:33am

Thanks Pretzil,
It surely has been a long journey and I fear it is not over yet. She has been given medication to slow her heart down, but unfortunately she has had 2 blackouts since Friday and her last blackout was on July 1st (not counting the one during the test). This has been quite upsetting for all of her, naturally her most of all. She suspects that the medication may have reduced her heart rate too much. I have just emailed her neurologist and her cardiologist. Back to the waiting game for now. But we do have an appointment with the Cardiologist next week. I am hoping that someone will get back to me today to advise on a course of action.

I will keep the thread updated when there is news.

Dreannz · 19-10-2015 12:19am

Was she diagnosed with pots after tilt table test. Glad you are getting answers

nikkibikki · 19-10-2015 1:39am

Just read through this thread now. Wow, OP, ur daughter is lucky you've kept fighting for an answer.

My aunt, incidentally also called Angela, was diagnosed with a condition called pre syncope after her tilt table test. Her BPM went that low too. She has since been fitted with a pacemaker and things have improved a lot over the last 2 yrs or so but she'll never be 100%.

Glad I came across this thread. My GP diagnosed me with Muscle Tension Type headaches last week. He told me to Google it. I did and am not convinced that's what i have and after reading this i'm thinking he has forgotten about the MRI of my neck he convinced me to pay â‚¬200 for a few months ago that showed some of the upper discs are under pressure. I didn't join the dots but surely he should have. I've a few medical issues myself and not convinced I am being giventhe correct diagnosis but I don't think I've much hope of getting it either. Where are these docs like in Greys Anatomy and the like who actually give a sugar!

Oh OP, I hope u reported that rude, obnoxious neurologist who said she was faking it!

EllieMay1969 · 14-01-2016 11:42am

Hi nikkibikki.

Sorry I haven't replied to your post until now. It has been rather hectic here and I haven't gotten onto this site.

My advice to you if you are still getting those headaches is to keep looking for an answer. As you said when you looked up the tension type headaches they didn't quite fit.

We have no resolution on Angela's condition yet but at least now we know that her heart is playing a part in what is happening.

Have you considered a Chiropractor to look at those discs. Angela had some disc problems too and went to a Chiropractor and got a considerable amount of relief from his intervention.

Hope you are feeling better.

Difficulty getting diagnosis

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