Story about Aquagenic urticaria , Dysautonomia / POTS.

My mess of conditions

Feb 13, 2019

By: Lindsey

Year Condition Began: 2015


I’m 20 years old and was diagnosed in 2017 with aquagenic urticaria (water allergy). I have had signs of this condition all my life and have always sneezed whenever I shower, have a bath or swim, but have been otherwise healthy.
However, from the age of 17 I started to develop symptoms of PoTS (Postural Tachycardia Syndrome), which means that my heart rate becomes rapid when I stand and even day-to-day activities can cause sudden spikes in my heart rate. For example, putting pillow cases on my pillows causes my heart rate to reach 175bpm even though I am taking beta blockers to lessen this.
The impact of PoTS on my life has been significant, as this condition causes a wide range of symptoms including difficulties in thinking clearly, joint pain, severe tiredness, shortness of breath, stomach problems, chest pain etc. I struggle to make it through a day at work and find it a challenge to do the things that most people my age take for granted.
When diagnosed with PoTS, one of the key lifestyle changes recommended to ease the symptoms is to increase your daily intake of water as dehydration worsens PoTS symptoms. However, since developing PoTS, my water allergy has intensified. Now, whenever I have a shower, as well as sneezing, I am covered from head to toe in an itchy rash which looks and feels like a nettle rash, my nose burns and my eyes become bloodshot and swollen. I am allergic to my own tears and sweat, again coming out in hives. I take strong antihistamines and asthma medication to lessen the reaction which makes having a shower manageable, but I struggle to drink water as it makes me feel as though I will be sick and it causes sores in my mouth. I rely on drinking milk and some juices instead of water as my body doesn’t seem to react as much to these.
I am part of an online group for people with aquagenic urticaria from around the world and we are trying to raise awareness of this condition in the hopes that there will be more treatment options developed in the future.

In the mix of all of this, I have also been diagnosed with Hypoglycaemia (unknown cause), Mast Cell Activation Syndrome, Ehlers Danlos Syndrome, Reflex Syncope, Anxiety Disorder and Chronic Fatigue Syndrome.

Thank you for taking the time to read my story.
Story about Aquagenic urticaria

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