UPDATE: I just wanted to come on here and update the outcome should another diabetic ever experience what I have and still am.
After my admission in November, I was on a Gastro ward eventually and had an endoscopy, the endoscopy results were clear and nothing was showing during procedure.
I seen the Gastro Registrar the next morning, who went through my Symptoms, Frequency, Health between vomiting episodes, Life Factors.
Symptoms: (there are more but just listing what I have experienced)
• Intense Sweating Periods (waking up damp and soaked)
• Severe Nausea
• Stomach Pain (it was so bad at one point they thought it was my gallbladder)
• Diarrhoea
• Loss of Appetite
• Vomiting
• Looking way paler than usual
Frequency: This was occurring every 3-4 weeks.
Health between vomiting episodes: As soon as the vomiting stopped I returned to my normal self relatively quickly (4-5 hours, sometimes around 8 hours).
Life Factors:
• Struggling pretty bad with my mental health (suspecting I have Emotional Unstable Personality Disorder stemming from traumatic childhood) and not getting the correct treatment and support from the mental health team in NHS Wales. I’ve been seeking support since November 2022.
• Learnt on 24/12/2023 that my Gran has terminal lung cancer and they’re unable to offer her treatment, this has really impacted me and I feel my world has burnt down to ashes. She’s so stubborn in ways (in denial) and this has really impacted me because there is the elephant left in the room and when she eventually passes, I know exactly how my life will be and it’s going to be sad and stressful.
TRIGGERS:
I told the Gastro Registrar, whenever I feel I can’t take anymore mentally, whenever I feel really overwhelmed it brings it on.
• The reference I made was back in August, I was due to go on holidays to Spain on the 28th, with the stress of it being my “nans last holiday”, I wanted to make sure we had an amazing time and had memories to hold on to forever after she goes. On the 23rd Aug, late in the night, I got into an heated discussion with my mother over my mental health and how I was blaming myself for my Nans cancer, I got so overwhelmed and upset, I went into my bedroom and collapsed into tears, as soon as I stopped crying, the vomiting started.
• I would see my Nan to go shopping, drop her home and then pull out of the street vomiting, because I was so worried about her eating and that she wouldn’t last much longer, considering the only fight for her cancer she has is herself without treatment being available (she lost an extreme amount of weight).
• Christmas after my admission in November, I could sense a vomiting spell coming, I’m always really stressed and anxious at Christmas because of bad things with my father. My Nan had mentioned that she was going to have a big conversation discussing things at Christmas when all the family was here from Scotland, this was bearing on me so much, because I knew the conversation wasn’t going to happen even though it really needs to happen. I was so stressed all of December and I said to my partner “if I’m not sick on Christmas it will be New Year I tell you”. I managed to make it through Christmas, however on early hours of 01/01/25, I woke up, sweating profusely, dizziness, nausea.
I was constantly vomiting every 10-15 minutes for 48 hours, one day I was sick a minimum of 72 Litres, yes you read that right 72 Litres.
Together discussing this we realised that Gastroparesis wasn’t the correct diagnosis to give, i wasn’t displaying any signs of it apart from vomiting, the discrepancy being that with Gastroparesis you vomit undigested food, where as, I never vomited undigested food on any episodes.
The Gastro Registrar said to me “I think this is something we call, Cyclical Vomiting Syndrome, it’s a repetitive pattern of vomiting, every episode is the merely the same, and you have periods of complete normal health in between, there are 4 Phases;
1. Prodome Phase (symptomatic phase, profusely sweating for nights, severe nausea etc),
2. Emetic Phase (vomiting phase)
3. Recovery Phase (upon when vomiting stops completely and you return to normal self)
4. Asymptomatic Phase (being in normal health). With what we have discussed it seems this is what you are experiencing”
I told him that I believed already I may have Cyclical Vomiting Syndrome after doing my own research, keeping logs of when it happens and triggers.
So… my diagnosis is Cyclical Vomiting Syndrome, a rare condition that affects 2% of the population. You can be a child, you can be an adult, it could’ve started in your childhood, it could’ve just started at any age.
Which I have to laugh at because being sick as a diabetic is no joke when we get stomach bugs or food poisoning, so the cyclical vomiting for me puts the icing on the cake have to laugh or I’ll cry!!
Considering it is Rare I’m leaving this here should another Diabetic be experiencing this, it’s been hell with ketones (and we know how dangerous those can be). I was the teenager who always said yeah whatever in regard to knowing about diabetic sick days but please even if it’s at your next appointment, ask for a refresh if you are unsure at all, it’s so important to be able to manage yourself to the best degree when being sick. Being in such good control prevented me from being admitted into A&E, also with the fact I was non stop drinking water (self comforting manoeuvre) so I wasn’t dehydrated once.
There is no cure or a 100% this works treatment, the only thing I can do with this condition is try to avoid my triggers, I think that’ll be hard because I can’t avoid my Nan as I care for her! So it leaves me with a plan of taking 50mg of Amitryptaline to rewire the brain to gut signal to lessen the chances of an episode occurring, and abortive medicine (anti emetics), not the same anti sickness works for everyone, Cyclizine doesn’t touch me at all no matter how high the dosage, Domperidone works but isn’t the correct anti emetic for the condition, so I am taking Ondansetron, which works as a serotonin blocker anti emetic. I believe my mental health being in such a bad place and struggling to get support from services, has brought this on for me, it’s like when my brain can’t handle any more, it wants to get rid of it, but once it’s in your brain, it’s there, so to “reject” the trigger, the brain sends a signal to the gut, hence the vomiting.
If you’ve reached the end I hope I haven’t bored you, and if your reading this because you think this is what your going through, please don’t let the medical professionals gaslight you, I mentioned cyclical vomiting for months and got told it was probably Gastroparesis because I was diabetic, then I was told I could have a bad grade stomach bug that won’t clear up without strong meds and it will make me sick like I was for months, even told to go privately by a senior consultant, when all it took was for a professional the actually listen to me and properly examine what had been going on!
We know our bodies, we know what’s right and wrong, nobody can ever argue with us Diabetics because we know better than healthcare professionals in A&E, advocate for yourself should you be facing upheaval in care, they don’t ever understand how much damage we can endure from simply vomiting.
The vomiting doesn’t get easier, but managing it does.
