Retching

Hi Everyone,

I just wondered whether anyone has found they have phases of retching?

I have been retching for the last couple of years particulary when I go into a cold environment, I am very rarely sick with it but the retching is extreme.

I am currently waiting for an MRI appointment to check me out for potential MS. I have previously been diagnosed with Fibromyalgia but have other symptoms which means I now need to have MS ruled out (Eye pain, bladder problems) however one of my major problems aside from the daily pain I am in, is the retching. It has disappeared for a few months and is now back with a vengance. The Docs couldn’t fit it within the Fibro umberella so suggested it could be a “memory of an old virus!” but I have recently seen a study that suggested some MS sufferers have this as a symptom but couldn’t find much more info about it.

Thanks for taking time to read

Cheers

Jax

Hi,

I am undiagnosed but I also retch too

Hi Jax, and welcome :slight_smile: I’ve not had retching and I’ve not come across it that I can remember, but then my memory is shocking! If I get the chance, I’ll have a look in the MS literature to find out about it and let you know. It sounds like a very distressing symptom :frowning: I hope it improves soon! Karen x

Have either of you had any investigations or been to see anyone for the retching? Also, is retching the only symptom or do you ever get the feeling of a lump in the throat? There’s a condition called globus pharyngeus that can cause the symptom of retching and a feeling of a lump in the throat. I was diagnosed with it about 4 years ago and take acid control tablet lanzaprozole to help control it. Worth checking if your symptoms fit and seeing the gp about the symptom

Hello Jax, I have suffered with retching for years and it is very unpleasant. I find that when it starts, I suck on a polo. I should have shares, goodness knows how many packs I’ve gone through!! It seems to calm it right down, so if you try, I hope it helps. I was diagnosed in February with MS and I did ask my Nurse about retching, especially whilst brushing my teeth and she said that anything is possible as I have spinal lesions. Over the years it has had my GP stumped and it is something I’ve had to live with. I hope you find something to help. My advice for now, is when it starts suck on a polo. Let me know if it helps :slight_smile: Sam x

hi, i wonder if it is acid reflux or something like that? I take lansoprazole for acid reflux, which actually is a similar pain to angina.

cardiologist said it is acid reflux and not cardio pain.

luv Pollx

Thanks for your thoughts everyone!

I’ll certainly give Polo’s a go (Sugar is my favourite medicine!! :slight_smile: ) hopefully they will work for me too, worst thing is when you are shopping in the supermarket and start retching, always as soon as I get into the chilled aisles, the other shoppers tend to seem a bit wary … I wonder why! lol

I haven’t felt a lump in my throat at all, it is just a sudden feeling that comes on, get that cold running feeling through my stomach and start producing excess saliva and then I retch until i manage to bring it under control usually with some controlled breathing. The common occurence with it does seem to be the cold, if I leave my living room and go into the cold kitchen on an evening it will usually start. Very odd really but then with my body lately I am beginning to think that maybe I am just an odd person! It would certainly expalin those odd looks over the years.

Thanks again everyone, if anyone else has had retching experiences I would be interested to hear from you. In the mean time I’m keeping my chins up and will wait for my MRI (thanks for the advice on those too, I think might have to see my Doc to get something to calm me down for it!)

Cheers

Jax

Sorry, I completely forgot to tell you that I had a look for papers about MS and retching. I’m afraid nothing really came up when I searched. There were mentions of Herpes Virus 1, but very little about MS and, when MS was mentioned, it was mentioned alongside HV1.

HV1 is the herpes virus that produces cold sores, amongst other things.

There are bound to be other causes too though - they just didn’t come up in my database search :frowning:

Kx

Sam, thanks so much for the Polo’s tip!

They definitely stop the sick feeling as soon as I start sucking one.

Think Polo sales in Cornwall are going to go through the roof in the next few months! lol

Cheers

Jax

Sam, thanks so much for the Polo’s tip!

They definitely stop the sick feeling as soon as I start sucking one.

Think Polo sales in Cornwall are going to go through the roof in the next few months! lol

Cheers

Jax

Oh wow, glad it helps!! You’ve really cheered me up :slight_smile: Sam x

Hi,

Yes I vomit, and ‘heave’ on a regular basis. It generally starts early hours of the morning, and continues throught the day (acompanied by the worse headache).

I am not ms dx, currently on my umpteenth neuro, who I went to see last week for my results only to find (after a 50 mile round trip) that the radiologist had not reviewed the mra contrast - so no results, and he didn’t have the decency to cancel until the results were in.

However, I did manage to pin him down to ‘hear’ all of my symptoms (over 40 of them) and he agreed that they do mirror that of ms.

The plot thickens…

Hi,

Yes I vomit, and ‘heave’ on a regular basis. It generally starts early hours of the morning, and continues throught the day (acompanied by the worse headache).

I am not ms dx, currently on my umpteenth neuro, who I went to see last week for my results only to find (after a 50 mile round trip) that the radiologist had not reviewed the mra contrast - so no results, and he didn’t have the decency to cancel until the results were in.

However, I did manage to pin him down to ‘hear’ all of my symptoms (over 40 of them) and he agreed that they do mirror that of ms.

The plot thickens…

[quote=“Bee”]

Hi,

Yes I vomit, and ‘heave’ on a regular basis. It generally starts early hours of the morning, and continues throught the day (acompanied by the worse headache) [/quote] Vomiting and headache is usually migraine. Have you tried migraine meds, eg a triptan? You must take an anti-nausea pill with them (eg domperidone) for migraine pills to be digested. Migraine can cause loads of neuro symptoms too. Karen x

I agree with Karen, vomiting with a severe headache (especially if it’s one-sided) is probably a migraine. Have you described them to your GP. There are some very good meds for migraine - I have worked my way through most of them …

Tracey x

Hello Miss Jax,

In March 2011, I was on a walk with the dog one day, and had a sudden and violent retching (aka “dry heaves”) attack. It scared me because it was so sudden, violent, lasting, in public, and other reason for it like gastroenteritis (aka “stomach flu”).

I am very inactive due to severe lassitude/fatigue and a secondary disease to M.S. called Erythromelalgia (EM) that involves my CNS and vascular system. It causes a lot of burning pain (over and above M.S. burning) on my face/ears/arms, and sometimes feet/hands (though over 90% of people with it just have it on their feet.) Temperatures over 70-75 are uncomfortable and can even be painful, and exercise makes it all worse. It is very interesting that you mentioned that cold temperatures were your trigger.

To continue, during the summer of 2011, I had an episode again, then it was twice a month, then a few times a week. When I sought help, it was happening about 60% of the time I went on a walk. I only had one episode inside our home when I wasn’t doing anything in particular and one episode while shopping. I never had the “lump” in my throat as discussed above and never vomited. I only had the excess salivation and then seconds to a minute before the retching began.

My MRI showed I’d had some recent inflammation that was just starting to calm down. I had not seen anything like that on an MRI for many years. I was treated with 3 days of Solumedrol but 6 weeks later I still had episodes.

My neurologist then prescribed Acthar injections which I’d never had before. It took several weeks to arrange the 5 shots taken once a day because they cost over $30,000. They were billed like an hospital medicine (i.e. Solumedrol) and not like a regular prescription even though I administered the shots myself. I arranged for co-pay assistance through a nonprofit so the shots weren’t any more expensive than a regular prescription. I had those shots in January 2012 and switched from Avonex to Gilenya around March 2012. As an aside, to slow disease progression (not for symptoms) the Rx’s I have used are:

  1. Nothing (about 2 years) before Avonex came out

  2. Avonex (twice, for about 13 years total)

  3. Tysabri (about 18 months; positive for JC virus)

  4. Copaxone (about 4 months; then went back to Avonex)

  5. Gilenya (over 18 months now)

I believe Gilenya is stronger than Avonex & Copaxone but I’m not certain about Tysabri. A year after the first retching episode, I slowly began taking episode free walks. This summer in 2013, I had episodes twice, but it was not without working half the day in intense heat and thus, my own foolishness contributed. I apologize for the length of this post, but know if somebody out there has this symptom, they’ll hang on every word. Best Wishes! ~LGF

Related link: http://www.ehealthme.com/cs/multiple+sclerosis/retching

Hi Miss Jax,I wasn’t a member of the MS community support/comments until I read your mail and it is so SIMILAR to my experience that it’s spooky and more to the point I wanted to see how you’d got on health wise 3yrs later and indeed did you get diagnosed with MS? I was also thinking I might even be able to give you a bit of support because I truly know what it’s like to have a crazy obscure set of symptoms that makes one feel quite useless. I am 49 and suddenly at the age of 25 started to get severe inflammation in my left eye ans early on was told I had inflammation of the iris (iritis) and shortly afterwards I noticed pain and swelling in my hands,bowel problems made worse after the anti-inflam drugs and then crippling spinal mainly the lower spine.I did 9 hospitalisations from 1993-2005 and in that time had over 100 attacks of iritis scleritis/episcleritis (both inflam of white of eye sclera) and I got diagnosed in 2003 as having the HLAB27 GENE POS. it means I have a much higher genetic connection to getting these autoimmune inflammatory illnesses…Anyway I kept on at work and struggled to the point of falling asleep on the bus ,the painkillers and lack of sleep was very hard to cope with in a stressful job at times working as a support worker with people with learning disabilities a 5-1 ratio of clients to well me.lol…II lost a baby at 7 mths at the age of 28 and sadly in 99 my marriage ended because my husband couldn’t cope with the ‘changes’ and I hadto start again from scratch with nothing…

Anyway I wasn’t tested for MS ,I continually told them I thought I had Ankylosing Spondilitis and they kep on saying ‘no you are a woman it won’t be that’…anyway it was AS and it took 14yrs to diagnose. The symptoms of chronic spinal pain ,crohns bowel disease,severe depression/mood swings.balance problems and unbelieveably heavy periods that led to 3 D+C’s…it took 14 yrs to get on a genetic modifying drug called ANTI-TNF and my weight has almost doubled over the years and depression through life changes has been very hard.I had to leave Liverpool my home town in 2011 and moved 300 miles away and the hospital trust I’m under has a very bad repuation and has been in the news a lot of late.The antitnf has now failed after 10yrs and I’ve been left high and dry with it taken off me because it costs 700pound per injection .I’ve had a lot of falls in the past 2 yrs and am now housebound with no support and no friends down here at all…I’m so sorry writing all this but as a woman I KNOW there’s going to be other women out there that can relate to being pushed from pillar to post and the sexism and bullying that SOME rheumatology depts can have when they don’t understand/know what is fully wrong with us and as women we get called ‘head cases’ because THEY don’y have the answer…

I too am now having ‘dry heaving’ it comes on me in waves and it’s like I’m going to throw up but nothing happens but it can be violent and lasts up to 5 minutes and I can get very dizzy too. I have a higher disposition to getting MS with having a demylating spinal disease anyway and in the last 2 years I’ve developed full bladder incontinence and have to wear big pads all the time…I have written all this and for me to expose the details of my personal life is very rare BUT there are circumstances behind all illnesses and stress I believe is the number one in such matters.

Can you Jax relate to the symptoms and apart from Fibro which is still a contentious diagnosis in some circles ,well have you ever had gene tests?? the HLAB27 test seriously it will be worth you having and if you are still told it’s fibro only then that blood test might narrow it down…If you can get back to me I’d be so grateful as your mail just jumped out at me and like me you’ve no doubt been overwhelmed.I hope you’ve had some answers in the 3yrs since you wrote your post and I’d be so gratefulif you cold let me know did you ever get the diagnoses?? Luv and peace toyou and ALL who pass this post…Sophie W