Its all in the genes….

I wanted to update my blog yesterday but I was so spaced out from starting the slow release morphine that I slept most of the day! I have a hazy recollection of speaking to my GP in the afternoon, he rang to check I was OK on the morphine. All I could do was giggle and yawn, so I guess I sounded OK. Unfortunately the morphine is making me constipated…… I know too much information! So he has prescribed me some laxatives. I can’t do prunes or prune juice before anybody suggests that my body will not tolerate them and I don’t leave the bathroom for about 4 hours!

The morphine has worked wonders for my pain its now a 2/10 rather than being 8/10. I can cope with a small amount of pain. Today I’ve had my friend Amanda around  and I was actually with it! I still look pretty ill, quite pale and pasty but no pain.

So why was I desperate to post yesterday?

 It looks like its all in the genes for my sister and I. My sister and I got diagnosed the same day in two separate cities last month with Ehler-Danlos Syndrome Type 3 – Hypermobility. Yesterday my sister had her tilt table test. I made sure I gave her as much information as possible so she knew what to expect. As I chatted to her on the phone yesterday morning before her test she was very blase about it all. In fact she was confident that she didn’t have POTS, it was all a bit of a fuss about nothing.

Later that afternoon I had a text message from her confirming that she did indeed have POTS. She had almost fainted after they gave her the GTN spray up her nose. The GTN spray is the same medication angina patients use to open up all their veins and arteries – its a vaso dilator. Luckily they tipped the table back down again as she slumped forward. She was tested by the same team that treats me so they knew she was my sister. They talked her through her results, her heart rate had started at 80 beats per minute supine (lying down) on the full head up tilt (simulating standing) her heart rate increased to 162 beats per minute and she began to hyperventilate.

 Its an automatic response for people with POTS to hyperventilate when standing as our body is desperately trying to get our blood to circulate around our systems. We hyperventilate to prevent fainting. I noticed it when I had my tilt table test and managed to concentrate on my breathing to slow it down. At the time I was terrified that they would accuse me of inducing a faint by hyperventilating such is my mistrust of the medical profession. However since then I have learnt its a natural POTS response.

The team testing her stepped in and got her to concentrate on her breathing and bring it back to as near normal as she could manage. They were very good with her as they had been with me, even though I tried to puke on them! They talked through her results in a lot more detail than I ever got – yes I am jealous, I’m still waiting for a copy of my report! All I know is that my heart rate went above 150 beats per minute on standing but I have no idea what my supine heart rate was.

So we have both now  been diagnosed with EDS 3 and POTS it looks like its in our genes. Its not unheard of for siblings to have both, indeed I know a local family where everyone in the family has it to varying degrees. Its just taken 37 years for my diagnosis and 35 for my sisters.

The question is now for my sister does she have ME as well? We have been told for over twenty years that she has ME. Is it really that she has had POTS and EDS all this time? I know a lot of autonomic nervous system issues also occur in ME, it is a bit of a grey area. Although how POTS and EDS patients are treated by the medical profession isn’t great, (due to ignorance about the conditions) its a damn site better than the way they treat patients with ME.

This latest development has sent my parents into a frenzy to try and find out as much medical information about their families as possible. It isn’t that they are looking for someone to blame or which side its come from they are purely are looking for the genetic connection.

4 thoughts on “Its all in the genes….

  1. So glad the morphine is helping! But like most narcotics constipation is a major problem. Sorry to hear about your sister. Have your parent had any testing done?


  2. Hiya Rachel,

    Thanks for your comment.

    My parents haven't had any testing done, there is possible EDS and POTS on both sides. Both unconfirmed as we are talking about great grandparents when both these syndromes weren't recognised.

    I'd like both my mum and dad to have the tilt table test…..but maybe that's me being cruel lol. Actually I am highly suspicious that they both have POTS to a lesser degree.

    Both parents have clear signs of EDS so its not beyond the realms of possibility!

    Rach xx


  3. Hi Rachel .. sounds as though the detective work is paying off .. interesting – I'm sure extremely unpleasant for the two of you ..

    I just hope the balance of morphine and laxatives can be worked out ..

    Keep cheerful .. Hilary


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