PLEASE HELP or advice

[Mykel1]

Just a small disclaimer. Please rest assured this isn't a life threatening situation or a cry for help (though the title says help). I'm just seeking advice regarding sickness and vomiting and want to know if anyone has had something simar. Just thought I'd mention that so you don't expect a jump scare WTF moment.

So my partner had an AVM around this time last year. During her recovery, I noticed that she had what appeared to be cyclic episodes of sickness and vomiting. At first I thought it was hormonal linked to her monthly period but as time went on, I couldn't pin point the episodes to anything specific. She would go for a week without eating and drinking because she'd be throwing up constantly. This then stops and suddenly she eats everything under the sun ceaselessly. They never really got to the bottom of what was causing the sickness and it was suggested it might pass on its own.

Since being discharged in January, I noticed the pattern of binge eating and then vomiting and sickness. The episodes of sickness were not at all intentional. I also noticed that she would get fixated on certain foods. An example is bread. She would eat bread and nothing else for a couple of weeks. She could finish two loaves in a day. Out of nowhere, it stops, and she gets fixated on something else. The nausea was always in the background and she'd go through bouts of sickness as well.

Over the past couple of months, the sickness and vomiting has become the order of the day where she's unable to keep anything down. We attend A&E probably 3 times a fortnight and we have emergency GP appointments probably 3 to 4 times a week regarding the sickness. She's on every anti sickness meds known to medicine but nothing works. In A&E every visit comes back telling us that all her bloods and obs are normal and there's no changes in her brain scan. She gets IV fluids and IM antisickness meds but still throws up when we get home.

Due to the sickness, I've tried to vary our meals as much as possible to a point where we have take aways almost every other day. It seems take aways is something that gives her variety and it stirs her appetite. Sometimes she'll eat, sometimes she'll just have a couple of bits and say she's full but on most occasions, she'll throw up straight afterwards.

They've done tests, bloods, and I even pushed for a brief admission just so they can monitor but nothing. Not a single hint as to why she keeps throwing up. We had a Neurosurgery review recently and they were happy with her brains healing process. When informed about the vomiting and sickness, he said this was not a common feature associated with my partners procedure and condition. Basically, he was clueless and said it might pass. I suggested a gastrointestinal referral but the doctor felt that would be pointless and won't tell us anything.

So, the dilemma here is around sickness and vomiting. I have no idea what to do. I'm spending a fortune on take aways just to ensure she eats something. Even when she prepares the meals herself, she can't eat them. It's a real tricky one. I've even suggested that maybe she get a weekly IV bag and a weekly IM antisickness. Regarding the IV bag, I was politely reminded that this is the UK which is the birth place of modern medicine and practices such as weekly IV bags were things you'd find in less medically inclined countries. Basically, we don't do that kind of stuff here. Regarding the anti sickness, there's a national shortage and it won't be in stock for months.

I've fought quite a few boss levels battles over the past few months but this is just on another level. Can't the matrix algorithm select a better player to fight in my place like scorpion or Kitana or maybe just help upgrade my weapons a little bit so I can even out the playing field and clear this level, get my experience points and move onto the next level. Lol, just had to finish off with a gaming reference.

Any suggestions are more than welcome. I'd also love some suggestions on audiobooks to listen to. Just listening to the Dune: House of Atreides. My goodness, that's such a brilliant listen

[Leaf100]

Hi Mykel1.

I wonder if it has to do with the brain/eye link. Certainly that being out of whack can have a person going for gold in the hurling category.

I would ask Headway about a neurovisual test, or to see a neuro ophthalmologist.

As for the food cravings, mmm. I know for me my sense of smell went through a dance - some days I couldn't smell anything, and other days I could tell you where the moldy lemon was from across the store, and sometimes something in the kitchen smelt like 10 day old rotten fish and I could find not a thing that had gone off.

She may need someone who does taste and smell brain things - I have not run into it as a speciality, and there certainly is something there.

The other thing that kicks in is your body will rebel if given the same food over and over again, it can almost become like a toxin. I wonder if doing a 4 day rotational diet would help her - basically that means not repeating a food family until the 4th day after eating it. By food family, I mean something like brassica, which include cabbage and radishes. So say if you had cabbage on day 1 you don't have radishes or cabbage on days 2, 3, or 4, though when you get to day 1 maybe this time you eat radishes. This is an approach people with allergies often take.

It's a head scratcher.

Keep us posted, home you find something that helps soon.

Leaf

[Jowood29]

Hi, gosh this is so extreme and bizarre for you both. I’m going to suggest something way off here, so bear with me on this I’m no expert. I’m wondering if it’s more psychological? And a neuropsychologist would be a help?

I’ve experienced this with my daughter , but not as extreme and she hasn’t had any brain trauma. She would eat, sometimes a little of the family meal , then within 30 mins was being sick, later she’d eat a packet biscuits. She’d have snacks to binge on her room, I’d find the wrappers, but throw up after a health meal. She’d go out for an expensive meal with her boyfriend and be spoiled, come home and be sick , then get up in the night and make toast. She became very thin, and we discussed at length, was she eating too fast? To rich foods? Allergic reactions? Making herself sick? The doctor was involved and it came to the point where going down the mental health route was mentioned. I did wonder this myself, but she was happy or seemed it. She had a good job, a happy home with mum and dad , a sister who was supportive, friends , the boyfriend relationship could be unpredictable at times (they are now very happily in their own home). She did go for CBT sessions and slowly the sickness became less and less until it stopped.

I can only suggest in my experience that it was an away of being in control. The sickness was a reaction of the rest of the situation being unpredictable, anxiety and uncertainty, the sickness was a trigger to being back in control and so was the binge and snacking. When she felt more in control and could manage her overthinking and emotions with the help from the cbt sessions the sickness ceased.

Is this a possible route you could explore? A poorly brain am sure, (I have one) is very complex and the brain does impact the gut.

I hope you find some help and support, this is concerning for both of you. You can get a referral to your neuropsychologist through the hospital, rehabilitation team and GP.

Best wishes Jo

[ZeeandMe]

First of all i am ao sorry she going through this and i can fully understand because i spent 16 years very severe cyclic vomiting from 18 to 34 it did end up being hormonal and now that u have a hormone implant in my arm I don't vomit anymore. The pill, patch and injection didn't work but the implant did. Hormone related cyclic vomiting is very rare and therefore not known of until I saw i professor of gastroparesis who is specialist and informed me and gave me a new diagnosis. Please keep pushing for answers i was gas lit for most of those years and told it psychosomatic when it clearly wasn't. I also had a large brain tumour growing. Please feel free to contact me as I literally been through it all in my 37 years of life. Push for a gastro referral and please feel free to contact me anytime x

[Silkwood20]

So sorry you are both undergoing this. I assume they have checked for hiatus hernia? Also can Headway advise on how to push more for a referral to gastro team.x

[Mykel1]

Thank you for your responses. This has been very helpful. I think you may all be right. Following consultation with the GP a couple of days ago, he highlighted that balance is regulated by something in the ear. If this is affected, it can cause vertigo and nausea and vomiting. Its quite interesting he said that because a few months ago. my 11 year old daughter mentioned that one of the 'youtubers' that she follows has this condition and they have to realign something. Whenever she starts talking about youtube, I sort of switch off.

The psychological aspect was also mentioned a couple of months ago when she was admitted for a couple of nights for observation. They found absolutely no contributing physical factors and they put it down to psychiatry. Being a mental health nurse by background, this presentation is new to me. Maybe I'm just ignoring the obvious and trying to find some sort of physical tangible connection. It's a weird one this is.

Link with her cycle is another possibility. I did think that maybe her brain keeps realising a certain hormone or chemical or message which then triggers the episodes.

Hopefully the ENT specialists will be able to solve this one.

Thanks again and I hope you all have a lovely weekend 😊

[Percylovesbees]

I’m on long term cyclizine and omeprazole and it’s calmed down a lot - I was sick frequently and spontaneously in 2016 following chemo and radio. This had gone on for the last 7 years but is now totally manageable. I have a sliding hiatus hernia also which I wondered if it was involved. Apparently not. I ate dried bland foods for a long while which mostly helped.

Hope this helps but I guess we must accept we’re all so different.

Now I’m rarely sick if I keep up the cyclizine 😊

[Percylovesbees]

also they never got to the bottom of my vomiting and severe nausea. Apparently nothing to do with the sliding hiatus hernia or the arrested hydrocephalus soo be prepared for no explanation. But that’s ok if it stops

[Percylovesbees]

and I was seen by gastro