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Vomiting every couple of months for a couple of days - going on for years....

(13 Posts)
alittlequinnie Thu 28-Sep-17 14:07:03

I am beginning to feel pretty desperate!

For the last 10 years every couple of months or so - sometimes more, sometimes less - I start to feel really sick - really really nauseous and even turning over in bed makes the room spin - I loosen my bowels loads and then after a good few hours of this I am sick.

Once I have been sick I am then sick pretty much every hour for about 36 hours then it stops as suddenly as it starts.

Sometimes it starts with a headache - sometimes not - sometimes if it starts with a headache I can stop it with Zomig (prescription drug) but sometimes nothing will stop it.

By way of background I've always been a bit of a sicky person and when I was pregnant with my daughter was hospitalised with morning sickness - I was 16 then I'm 47 now.

I have been back and forth to the gastroenterologist and she has signed me off now saying it is "cyclic vomiting syndrome".

In 2011 they agreed to do an endoscopy to see what was going on but the endoscopy was not a success and they only really saw my oesophagus - I have not been offered a repeat test.

I think I might be celiac and have been tested via blood tests but it comes up negative - Celiac UK advise that the blood test will only show the disease if you have eaten gluten and to be honest I now avoid anything with wheat in it at all.

If I eat bread, pasta or cake my stomach swells up like a balloon and I start to feel really sick and get a headache and I also get mouth ulcers.

I have not had any mouth ulcers since giving up wheat.

I don't drink or smoke and I am not overweight - I do more than an hour cycling each day.

Since giving up wheat the attacks have become less often but not stopped.

In between the attacks I feel as fit as a fiddle - absolutely fine - although I am very headachy.

I did go to a nurologist years and years ago and she asked me if I got a headache when I sneezed which I do and she mentioned something about my brain stem and the way it is attached?!

My daughter has Fredrich's Ataxia and I must be a carrier to have passed that on to her but I can't see any link and FA causes muscle wastage.

Has anybody at all had similar?

picklemepopcorn Thu 28-Sep-17 14:23:32

Not migraine?

StrangeAndUnusual Thu 28-Sep-17 14:27:21

If you are coeliac, then avoiding bread/wheat/pasta won't be enough - you would need to avoid all cross-contamination as well (Coeliac UK advise on how to do this). Is it possible that you are sometimes getting a small amount of gluten from cross-contamination or something you don't realise contains gluten (e.g. stock cube, something with oats in, etc.)?

MissisBoote Thu 28-Sep-17 14:29:22

Is this what they thought it could be?

www.nhs.uk/conditions/chiari-malformation/Pages/Introduction.aspx

It can be diagnosed with a mri.

SofiaAmes Thu 28-Sep-17 14:32:59

You have mitochondrial disease.
My ds has cyclical vomiting. It's a symptom of his mitochondrial disease and is generally triggered by overstimulation (good or bad). Friedreich's Ataxia is also a mitochondrial disorder. You should look at the following websites: www.umdf.org/ and www.mitoaction.org/ where you will find lots of information on mitochondrial disease.
My son takes a lot of supplements and vitamins to treat his mitochondrial disease. These are known as the "mito cocktail" as it's a cocktail of supplements. The mito cocktail has pretty much eliminated his episodes of cyclical vomiting and migraine.
I did a quick google and found this clinic in the Uk. But you should search for one that's near you. Given your dd's diagnosis and your symptoms, you should have no trouble getting a referral to a mitochondrial disease clinic for yourself.

Aquamarine1029 Thu 28-Sep-17 17:53:24

Has your gallbladder been tested? Not just for stones but also for functionality.

alittlequinnie Thu 28-Sep-17 18:52:44

Wow SofiaAames - you sound so sure.

Just like your son though the vomiting is when I am really stressed or more likely have been really stressed and then calm down - i.e every single holiday from work!

You sound very confident regarding a referral - I will certainly give it a try!

I think my gallbladder has been tested - to be fair to the nhs I have had a lot of tests! Liver, kidney, speed of transit through digestive system - blood tests, pilori bacteria (did have that but was years and years ago and been tested since and negative every other time) and scans on my abdominal area.

Thank you all so much for your replies. I have only just got back to work after another bout of vomiting last week - I have made an appointment with gp to be referred back to gastroenterologist but not feeling hopeful.

BobbinBora Thu 28-Sep-17 18:59:01

Is it worth asking for anti sickness pills in the meantime? I have anti sickness tablets to take because I'm often vomiting with gastritis. Once I start vomiting I tend to go "down hill" quickly.

I'm on metoclopramide.

Sounds awful though OP and I really hope you get better soon flowers

SofiaAmes Thu 28-Sep-17 21:20:32

One of the big problems with mitochondrial disease is that it has multi-system dysfunctions and gets misdiagnosed for years! My father is a famous scientist who completely coincidentally works on mitochondria so I have had access to the best doctors and scientists in the world or it might truly have been many more decades before my ds was diagnosed.
In your case I am so sure because you have the symptoms AND you have a child with mitochondrial disease.
Please ask your gp to refer you to a mitochondrial disease clinic and not just another gastroenterologist. The former will treat the disease and the latter will just treat the symptoms which are NOT originating in the gut. Cyclical vomiting is related to migraine and it's the brain mis-firing and telling the stomach to vomit even thought there is no reason to vomit (like a flu or bacterial infection). The brain is misfiring because neurons need a lot of energy to operate and if you have mitochondrial dysfunction you are not producing enough energy to run your body and it's getting used up dealing with stress or other things like that (in my ds' case, it's from having too much fun...sad )

SofiaAmes Thu 28-Sep-17 21:22:28

The anti-sickness pills don't generally work for cyclical vomiting because you are not vomiting because you are nauseous, but rather because your brain is misfiring.

CMOTDibbler Fri 29-Sep-17 21:46:39

I used to have Cyclic Vomiting Syndrome (5 month cycle, 24 hours vomiting), until it morphed into classical migraine. I think it was 10 years or so I threw up for. Nothing else wrong with me, and though I throw up with the migraines if I don't get my medication in during the aura/precursor stage, it's nothing like it was. I do have coeliac disease, but it didn't change the CVS when I was diagnosed with CD

SofiaAmes Sat 30-Sep-17 00:11:22

My ds would throw up 30 times a day for several weeks when he had CVS symptoms. Now that he's on the mito-cocktail he doesn't get CVS symptoms for everything, but just an occasional vomit for serious upsets (or if he gets a bad cold .... which is complicated because if it's anyone other than his regular gp, I'm spending a lot of time explaining that the vomiting is CVS and not bacterial or viral and therefore not treatable in the conventional way...still need to worry about rehydrating and electrolytes, but antibiotics are not going to make it go away).
CMOT you too may want to look at the websites I linked above.

alittlequinnie Mon 23-Oct-17 23:07:54

I thought you might like an update. I went to the GP today - first appointment since I started the thread!

I spent about 15 minutes in there explaining it all and talking about the possibility of a link.

She was very reluctant but I pointed out that this had gone on for more than 10 years now - she said that often they "don't know" what is wrong but I was more persistant than usual.

She spent a long time looking up the symptoms of Fredrich's Ataxia (which my daughter has) but I obviously know I don't have that....

.... eventually she agreed, reluctantly, to "run it past" a genetic expert.

That's the best I am going to get I am afraid.

Not sure if that's good or bad?

I'm hopeful that an expert may say it is worth my being tested but she was so reluctant that I'm not sure he'll recommend it?

She says it will take about 4 weeks before I hear.

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