To think there must be something that can help DD?

[Owwdi]

Sorry for the shameless post for traffic, but things are a bit desperate.

DD is 22 and has ASD. She has always suffered with anxiety but it was manageable. She takes sertraline to help with it.

She doesn’t have many friends or what you’d call a buzzing social life, but she does have a few friends who are into similar things as her, they are scattered around the country though rather than living locally.

Just over a year ago she went to Japan with one of her friends and got really sick on the plane. She’s always suffered with travel sickness but this was the first time she was ever sick on a plane. Then for the next week (half of their holiday) she was too nauseous to go out or eat much at all, and spent that time stuck in their room. I managed to get her friend to take her to an international clinic where they gave her an anti sickness injection and some pills, and she managed to get out and about for the second week.

Since then, she has been feeling nauseous a lot. She’s been to the doctor and it doesn’t seem like there’s anything physically wrong, and both the doctor and DD agree that it’s a psychological issue.

It’s really getting in the way of her life. We’ve been paying privately for therapy for her for the last 4 months with a therapist who uses various methods including hypnotherapy. I’d say her general outlook and mood, and desire to get out and about has improved, but the feeling sick remains.

Day to day she seems ok now, but it’s literally every time there is something she really wants to do, eg a concert or convention, she’ll end up vomiting too much to be able to go. It’s happened several times now in the last year, she’ll travel to London to her friend’s place, feel ok, then the morning they need to go and do something, she starts vomiting. She’s just on her way back now after another failed attempt at having a social life and she’s feeling broken and like there’s no point in trying anymore. It’s hard to argue with her at this stage, I’ve been encouraging her to keep trying and believe that she can do it, but without fail she starts throwing up and isn’t able to go.

Even times that don’t involve travelling, like recently it was her birthday and her friends came to stay here, they were planning on going out, but DD woke up in the morning and started throwing up.

BTW she doesn’t drink or do any drugs, so there’s no way that’s an element to causing sickness.

She can’t go on like this. GP doesn’t seem helpful. Private therapy doesn’t seem helpful. I’m not sure what to do next, but she’s so low and what kind of a life is it if she can’t do anything fun without being sick?

I had something similar as a teen. It was related to work, just starting a new job and I would throw up for hours before work. The only thing that helped was basically forcing myself to do it. Every single day. Just getting up and going and just throwing up and keep on going. As hard as it is she just needs to force herself to do the things

Could be way off here but just a thought: have you seen this sickness taking place? Is there a chance she’s making herself sick? Not to be deceptive or anything like that, but either as a manifestation of an ED or as some sort of physical outlet for anxiety/a reason to not attend a social event she is nervous about, even if some of her really wants to go. If she’s torn with wanting to go to X place but has crippling anxiety about doing so, could she be inducing vomiting as an ‘out’?

Yep I think all that was nail on the head. She was diagnosed with panic disorder.

I had a nightmare trying to find a therapist at all, most of them just don’t reply! The one she has I think has definitely helped in lots of ways, but at £80 a session we’re no closer to solving the main problem of the sickness, after a lot of sessions.

Yes I have seen it and it’s definitely not deliberate, she’s always devastated when she can’t go. She spends months making cosplay costumes for events and then on the day she can’t go. She wants to go, so badly. She’s wasted so much money on tickets and travel to go to things only to be unable to go.

Sounds very similar to my ND teenage son who was diagnosed with stress/anxiety induced cyclical vomiting syndrome as a child.

She has carried on trying but it’s got to the point she doesn’t feel she can keep trying. She really hates being sick, I know no one loves it but she REALLY hates it.

Has she been screened for postural tachycardia syndrome (pots)? It causes chronic fatigue and physiological (as opposed to psychological) anxiety due to the heart racing and activating the fight or flight response. It can also cause digestion to slow down (something like gastroparesis) meaning people can feel chronically nauseated. My sister who has pots and is autistic tells me there is a strong link between PoTS and neurodivergence.

Sertraline can actually help the physiological anxiety side by it's effects upon the autonomic nervous system (i.e. parts of nervous system outside your active control eg digestion/squeezing of blood vessels when you stand).

If she's not been screened, could she have a 10 minute stand test through the GP surgery? Sertraline would influence the result but if her heart rate went up by 30 beats per minute without a drop in blood pressure, she could ask to be referred for pots treatment e.g. beta blockers or ivabradine. Getting in control helps the nausea and 90% of people with pots respond to treatment to varying degrees.

A certain proportion of people with PoTS also have what's called mast cell activation syndrome or MCAS. For patients with PoTS and allergic type symptoms or strange rashes, they can sometimes be recommended to take a daily non-drowsy antihistamine e.g. cetirizine or fexofenadine. This can be hugely helpful with their chronic fatigue/nausea symptoms.

From what I have seen, many people with physiological anxiety caused by activation of the fight or flight response become phobic or attribute symptoms to a psychological cause. This is because it is very difficult to feel physically anxious without trying to find a reason for why you feel the way you do.

Is he better now? What helped?

Just got to take the dogs out, but I’ll be back to the thread later. Thanks for all the suggestions so far 😊

Oh and also hypermobility of joints is linked with autism and also PoTS so worth doing a Beighton score if there's any suspicion she's hypermobile.

it sounds to me like chronic anxiety state of GAD(general anxiety disorder)
unintentionally she has got herself in a vicious circle , because it’s happened a few time now, her mind has become used to it happening that as soon as she’s out of her comfort zone's it brings the sickness on , then because her anxiety is heightened she get nauseous, because that’s hanging about, it triggers the sickness
so
out of Comfort zone
heightened anxiety
anxiety causes nausea
nausea heightens her anxiety more
hence sickness

when her anxiety lower’s does the sickness stop ?

This might be way off, but rather than trying to prevent the sickness or avoid the nausea, just for the next little bit of time, and you could both set a time limit, like one calendar month, could she perhaps try "radical acceptance" and push through?
Small plans only, like going for a walk with you or her best friend.
Yes, she's going to feel sick.
Yep, she might be sick.
It is awful and no one pretends it isn't.
But once she has vomited, she gets her shoes on and there is already sick bags, mints, and water in a bag that is by the door, and she just goes.

I appreciate you say she gets hysterical, and it might not work the first time, but as her mother and with her really clinging to childhood and that bond you share, it could help if you dig your heels in and find the grit for both of you - even if you just get to the end of the driveway. And then you celebrate it!

Massive hug, positive reinforcement, and lots of rest. And then the same thing the next day. A trip out is planned in advance, the nausea creeps in, is acknowledged, treated as a tedious chore, and then afterwards you all just go for it anyway.

Good luck @Owwdi 💖

Sounds like cyclical vomiting. ..

My brother was the same. If it was planned he would work himself into a frenzy leading up to it, resulting in him throwing his guts up and not end up going. If it was spur of the moment he was absolutely fine as he didn't have that time to worry about things (missing train, gettinglost, lots of people there ect). It was the worrying and whittling he did in his head that lead to his anxiety and him being sick. He eventually told me he used to worry so much he would throw up, that's exactly what he did. He was diagnosed with dependent personality disorder (DPD) when he was 25.

Definitely worth trying a change in antidepressant
Sounds like she is under treated.
She might do well with mirtazepine for example.

Not quite to the same degree but I experienced reflux sickness form stress. It was triggered by my job so only affected me on days I had to go to work. It took me a while to figure out the trigger.

I took Omeprazole (by prescription but you can over the counter it now) and I also have Generalised Anxiety Disorder which has taken years to get the right medication for.
Anxiety needs to be treated differently to depression, increasing her serotonin isn't going to help her manage her anxiety. I take an epilepsy medicine for mine and after 2 years on it, I feel like a different person. I still have my wobbles and moments but I really suffered before I found the right medication.
Also any contraception can be counter tuitive to SSRIs or similar medications.

Omeprazole may help her placebo to feel like she's got the nausea under control when it first starts and it will physically help reduce the acid in her stomach (less sick or at least less discomfort).

Is she autistic/AuDHD?

My son felt nauseous daily for several years due to school and other social situations. It didn't resolve until.he started ADHD meds as this stopped the constant over thinking that led to panic.

AuDHD isn't just autism plus ADHD- its very different due to how the two aspects balance each other out to an extent. One can mask the other which particularly in girls can make it hard to diagnose. Especially if the ADHD comes internally e.g. over thinking and anxiety (also more common i girls).

It can also lead to burnout and extreme tiredness which could also be a factor. Perhaps worth looking into further as ADHD related anxiety often doesn't respond to typical anxiety treatment.

Vestibular rehabilitation

I haven’t had chance to read through all the posts but my DD also has this.

We’ve had a million blood tests, all the stomach tests, camera down throat, MRI etc. nothing physically wrong. She also has POTS though which definitely affects her stomach too.

she is on fluoxetine - if she comes off this, she cannot manage life, on it she sails by generally ok (mentally) most of the time. She also has propranolol which helped as she could take it ahead of time e.g. if she knew she has a social event. she also has anti-sickness prescribed, the dissolvable one.

things are much better with all of this. She has ASD, ADHD and ARFID too, so it’s a whole host of issues combined. But it’s an awful place to be. She was severely underweight which I think helped us get something in place as the sickness was obviously making her lose more. But all the above has helped and now it happens much less (still weekly but we were at a daily situation)!

My son has a similar problem. His is due to inflammation of the duodenum and it is massively exacerbated by his emotions. He has ADHD and I’m dreading this weekend - we are flying on holiday for the first time and he will be so excited you can guarantee he’s going to throw up. We have bought special sick bags to hide the smell and so on. It helps!
He also gets sick if he’s worried/anxious about something and we’ve had some bullying going on.
The only thing the doctors have done is given him omeprazole and hope he will grow out of it. We are currently looking into some type of therapy for him (not easy to access where we live) and giving him plenty of warning for big emotional changes if we can.

Please look into EMDR therapy - you can find a therapist on the EMDR UK website- this is a trauma reaction and EMDR is phenomenal at resolving these issues permanently. Best of luck.

Ime GPs would rather tell you, especially if you are female, that your symptoms are caused by stress/anxiety/psychosomatic/ CFS, than take what you are saying seriously. It took me almost 20 yrs to have my reactions to food and environmental factors recognised as allergic reactions. Fortunately, it never got as bad as anaphylaxis!

Just a thought: two things for you to check are her hearing and balance. I am in remission for Meniere's Disease and the 18 months that this was active were the most miserable of my life. I no longer have any balance function so there are some things I avoid doing, for example lifting and stretching. Pilates is out for me, so is yoga, they both make me feel sick. The sickness and dizziness are in themselves very stressful and once they've been triggered, I will feel sick all day.

The people I know that this happens with are all autistic with other co-morbidities. One has asthma. Another has ehlers danlos. Both are vomiting because their social anxiety is triggering migraines. A regime to decrease migraines plus rizatriptan as needed is the solution in those cases.

I am also autistic and have an autoimmune condition. My migraines are exacerbated by stress. I’ve never had this particular pattern, but that is likely because I am just not that social. I take a pretty strong preventative, a last resort one, and use rizatriptan as needed.

Whatever's going on for your poor daughter sounds awful and quite complex. But one element is the dread/expectation of throwing up. Can I recommend that you look at an organisation called Thrive, specifically their Emetophobia programme (for mental health, the dread of throwing up, and the patterns people develop to avoid situations where they think they might throw up). It's not therapy or counselling, more like evidence-based coaching through a proven step by step programme. They used to be based in Cambridge and also on Zoom, but it looks as if most of the work now happens online with workbooks and videos etc. I've had some experience with one of their other programmes which was quite effective. Worth a look? https://www.thriveprogramme.org/cure-your-emetophobia-and-thrive/