I was diagnosed whilst pregnant twenty years ago but fortunately have had few prolonged symptoms. My son also has the condition.
Recently I have started to get a very intense feeling across my upper arms and chest almost starting at one side and crossing to the other. I find the feeling extremely hard to describe but here goes. it is almost like when you loose your tummy when driving over humps on country roads or the whooshing feeling you get when you jump off a diving board. i first noticed it only when I was lying in bed and turned over. It felt like a ripple from one side to the other but the feeling is so intense it almost makes me cry out. Now it is much more frequent and I feel it in my daily life ie when driving or sitting relaxing. It is quite disturbing and is becoming more alarming. Is this something that other sufferers have experienced or do I need to look elsewhere for an answer?

Type of Myotonia: Don,t know

When you get the feeling of your stomach dropping on a roller coaster it can be from the shift of your organs that are suspended by ligaments. The same thing could happen when you roll over, especially if there is a lot of liquid in your stomach.

But for it to happen when you are sitting still is baffling. If it happens after a meal, it's possible that you have a constricted space like a hiatal hernia and the contents of your upper stomach suddenly empty downward when your abdominal muscles relax. That's just a guess. A hiatal hernia can be quite painful or as you say, intense.

With myotonia we sometimes get something called esophageal pouches where the skeletal muscle changes to smooth muscle. Sometimes food tends to get caught and then that can relax and empty. But I would tend more toward a hernia as an explanation. Since the diaphragm is very much susceptible to myotonia, spasms in that muscle group can also cause some odd sensations and feel like it's taking your breath away.

I would say to ask your doctor, but they tend to ignore things like this. If you are able to see a chiropractor or get a massage, that my help if you have a nerve that's being pinched. That will make skeletal muscles more prone to getting cramping and spasms.

Please keep us posted -

Jan

Type of Myotonia: Thomsen's

Country: US

As Jan said, a hiatal hernia can cause odd sensations in that area. Other things that come to mind are heart problems, a problem with your thoracic spine, or seizures. You should talk with your doctor about this.

Type of Myotonia: Becker

Country: USA