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Re: Water retention

Andy, since myotonia congenita affects skeletal muscles it's probably not going to be a factor in the swelling. However it can be a sign of heart function and it's always a good idea to get a thorough cardiac workup including an echocardiogram (not just an EKG).

I developed heart failure and pulmonary hypertension (constricted arteries in the lungs) after a viral infection several years ago. At one point I have severe fluid overload in my legs. Fortunately it's gone now, but I have to make sure I don't take any medications that inhibit nitric oxide production.

Insulin can be a factor in water retention, especially in the period just before getting full-blown diabetes when you can have erratic output. Diabetes also causes fluid retention. Reduced kidney function is often associated with swelling, so it's a good idea to get that checked, too.

I know many doctors blow it off and say it's not a big deal, but if it is fairly constant, then it's probably a warning sign and finding the cause early could help you get treatment before the condition is harder to control. These are the medications that can cause swelling in the ankles/feet:

Antidepressants, including MAO inhibitors (such as phenelzine and tranylcypromine) and tricyclics (such as nortriptyline, desipramine, and amitriptyline)

Blood pressure medicines, called calcium channel blockers (such as nifedipine, amlodipine, isradipine, nicardipine, felodipine, diltiazem, and verapamil)

Hormones, such as estrogen (in birth control pills or hormone replacement therapy) and testosterone


Diuretics are often prescribed to help alleviate the swelling, and some can often help reduce myotonia (especially acetazolamide). But the first step would be to rule out any potentially serious conditions.


Type of Myotonia: Thomsen's

Country: US

Re: Water retention

Hi Jan and thanks for the response.

I think the culprit might be Verapamil which I'm taking to control cluster headaches caused by a sporting head injury some years ago. Of course the information leaflet supplied with the tablets did not mention water retention as a possible side effect but the timings do coincide.

I'd just like to thank you for running this web site which is a great resource for information in plain english on my condition. Knowing about it and how to deal with it makes such a big difference.


Type of Myotonia: Thomson's

Country: UK

Re: Water retention

I'll bet you're right about the Verapamil. This is a list of side effects from Mayo's information page:

Verapamil Oral

I have a brain injury from encephalitis a car accident and the best thing I have found for the headaches is low dose Benadryl (children's dose of 5 ml every 4-6 hours) and an amino acid called L-Histidine which helps with inflammation. Taking a lower dose of Benadryl keeps you from getting sleepy.

I'm glad the site is helpful!


Type of Myotonia: Thomsen's

Country: US