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My daughter (17) had a MH episode at the end of a surgery in October. She seemed to recover well, however, now that she has started working out and training to run track her senior year, she has started having muscle cramps.

The doctors keep telling me that she is ok to do all her normal activities, but I'm just not sure she is ok since she keeps having these cramps. Is there anything that she can do to make them better or anything that will reduce the frequency of these cramps?

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Treva,

Greetings, my name is Steve and although I'm not a medical professional...I have also been dx'd w/ MH (1999).

I guess my first question would be regarding your daughter's MH status. Other than the intra-operative episode . . . is there a history of MH in your family? -or- Was your daughter diagnosed via muscle biopsy? REASON I ASK, is that even though I experienced an MH episode (1999), it wasn't until I had the actual muscle biopsy that they were able to dx the MH. This would obviously be an important first step.

Assuming that your daughter has been accurately dx'd w/ MH, I think your concerns are justified, particularly in light of her recent MH episode. I don't believe that you'll likely find many (if any) Family Practice or Internal Medicine doctors that know much about Malignant Hyperthermia. I’ve been to several Neurologists that were not well informed. It seems that only recently have medical folks in the MH-world even started to give attention to MH outside the operating room. For example, Dr. Sheila Muldoon had performed my original muscle biopsy back in 1999. At that time, she (like many others) believed that I should and would be able to return to a normal active life. That being said, 8 or 9 years later, Dr. Muldoon has changed her position regarding MH patients and exercise. She believes that MH folks should still be able to exercise; however, she would definitely argue that MH patients should not be viewed in the same light as those without MH. Additionally, it seems like only recently have I noticed maedical articles addressing this dimension of MH. Here is a link to an article that was recently published and Dr. Henry Rosenberg (associated w/ MHAUS):

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1867813

I cite this article for two reasons (1) its current and (2) it "briefly" touches upon the possibility of MH incidents occurring outside the operating room. That being said, you’ll still be hard pressed to find many (if any) medical articles addressing MH Awake Symptoms (primarily muscle cramping) outside the surgical experience.

Regarding medications, I’ve taken many different types of muscle relaxers and anticonvulsants w/ no success in relieving my muscle cramps. That being said, Dantrolene (muscle relaxant) is the only medication that has been successful at relieving my MH related muscle cramps. If your familiar w/ MH, then you’re probably familiar w/ this medication. Dantrolene is the medication kept in the operating room to treat intra-operative MH episodes. Regretfully, this is the only medication that has been successful…although it comes w/ many negative side effects. I have also not found supplements to be successful...(sorry, I wish I had better news on this front).

If you’re interested, you can use the “Site Search” feature above to search the MHAUS Message Board for other threads similar to yours. Please excuse any “Spam Postings” that you may run across in the process; the MHAUS folks have recently improved their security features…however there are still many “junk postings” filed in the achieves.

Best of luck to you and your daughter.

Steve

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Steve,

Thank you for your response. It was helpful. My daughter has not had the biopsy yet as her "episode" just happened at the end of October and we have been dealing with the thyroid cancer issues. She is just now done with that stuff and we can now focus on the MH.

I will read the article that you recommended. My main concern at this point is her running track. I am assuming that she probably with have trouble with muscle cramps, but I am more concerned that something more traumatic will happen.

Again, thanks for your help.

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Sorry to read about your ordeal with MH awake symptoms. My problems started after chemo and the loss of all function of my thyroid. What has helped lessen the muscle cramps is reducing the thyroid replacement a little, under a doctors direction. Of course dantrolene and bananas help a lot. Paul

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My husband has had a positive reaction to this and my children have the potential for triggers in the future!

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The issue of exercise limitation and the MH susceptible is very poorly understood. Steve gives a nice overview of the issue in his response. I have had several patients who have complained of muscle aches and cramps after recovering from an MH episode, but it is not common. One question is the extent of muscle damage at the time of the episode. If there was a marked elevation of the enzyme creatine kinase indicating muscle damage, it may take some time for the muscles to recover to normal. There are no guidellines for recommending dantrolene to prevent such cramping although anecdotally I have heard of some patients taking low doses of the drug to prevent cramping. The person I would address your specific questions to is Dr. Barbara Brandom at Pittsburgh Children's Hospital since she has had some patients with this issue. She is also the director of our North American MH Registry and I am sure would be interested in advising you on genetic testing for the family as well. A very recent article in the journal Cell, describes how the genetically engineered mouse model of MH will display MH signs on exposure to a hot environment. Whether that is translatable into humans is unclear, but it opens up new possibilities for the understanding of the relation between heat, exercise and MH. Here are a few links to the press release about the article: Genetic Disorder May Hold Key to Heat Stroke Cure DentalPlans.com, FL - 3 hours ago THURSDAY, April 3 (HealthDay News) -- The key to curing heat stroke may have been found in a genetic disorder that causes people under general anesthesia to ... http://www.dentalplans.com/articles/31819/ Genetic Disorder May Hold Key to Heat Stroke Cure HealthCentral.com, VA - 3 hours ago THURSDAY, April 3 (HealthDay News) -- The key to curing heat stroke may have been found in a genetic disorder that causes people under general anesthesia to ... http://www.healthcentral.com/diet-exercise/news-210831-31.html

Please see also my recent blog I posted. So, no clear guidelines, every case is individual, but I would urge the MHS to not expose themselves to extremely hot environments while exercising (such as wearing a sweat suit in 90 degree weather). Every case must be assessed individually. I am sure that there will be more information and interest over the next few years.