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:
Nothing (about 2 years) before Avonex came out
Avonex (twice, for about 13 years total)
Tysabri (about 18 months; positive for JC virus)
Copaxone (about 4 months; then went back to Avonex)
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