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Pain and heart medication

Hi,

I'm new to the site and very happy to have found it. I was Dx with "myotonia of unknown etiology" over 30 years ago but it was less than 1 year ago that MC was identified via genetic testing. I believe it is Thompson's, but not positive. My biggest problems have been with weakness, lack of stamina, muscle pain and cardiac issues rather than the stiffness. The MDA neurologist who ordered the testing, at my request, was not really very helpful in helping me understand the condition when the results came back -- he only gave me a printout from Wikipedia. This sounds like a similar story to many others. My current and most pressing questions have to do with recommendations for medications for 1) general tacycardia with AVNRT (AV node reentry tachycardia) and 2) extensive neck and shoulder muscle pain.

Tachycardia and AVNRT: The cardiologist prescribed a long acting calcium channel blocker today for these conditions. Is this a safe medication for MC? It seems I saw one or more posts of people who had difficulty with a calcium channel blocker. Is that correct?

The second issue, the neck and muscle pain: I recently started to see a PT. My shoulder muscles are like rocks. I have restricted range of motion, tight muscles and a disc problem in my neck. There appears to be nerve involvement. Work with the PT at this point has increased the pain (for many days)as she starts to loosen things up. She recommended that I get a pain killer. The MD's seem to be quite uninformed re MC, so I am hoping to get some suggestions from this forum. I can't take asprin or any other medications that can effect hearing as a side effect.

Thanks in advance...

Linda

Type of Myotonia: Thompson's

Country: US

Re: Pain and heart medication

Linda,

I'll add another reply with a list of contraindicated medications for myotonia congenita. If you want to email me your genetic testing results I'll look up the particular mutation/mutations on a database to see the association with Thomsen's or Becker's MC.

In general heart problems are not related to myotonia congenita because the affected chloride ion channel is just in the skeletal muscle, not the cardiac muscle. However the electrolyte imbalances and high lactic acid levels that can be caused by myotonia can also affect the heart. For instance my mother had cardiac arrest from high potassium levels during surgery. I have to make sure I get enough magnesium to compensate for the depletion from muscles constantly overfiring. There is a great book that my cardiologist recommended to me called "The Sinatra Solution" by Stephen Sinatra. It shows how you can treat many heart problems naturally with supplements rather than medications that can have serious side effects.

I have a herniated disc in my neck, also, and while MC doesn't cause disc issues, the nerve impingement can cause the muscles to "guard" the injured area by firing constantly (spasms). This is the body's way of trying to stabilize the joint but for us, it makes the myotonia much worse in that area. Heat helps me (I use ThermaCare Heat Wraps on my neck and shoulders). I know doctors usually recommend PT, but it always made me worse. Go with your gut feeling, and if it doesn't feel right, don't feel badly about discontinuing. Make sure the therapist doesn't use "Spray and Stretch" - that is very dangerous for us.

One thing that might help is aquatic therapy in a WARM pool. It needs to be 94-96 degrees to keep from aggravating myotonia. Gentle stretching is good - therapeutic yoga classes which are low intensity can be good.

As far as pain relievers, capsaicin is the best choice for us because it not only reduces pain, but it stimulates the chloride ion channel and improves myotonia. You can use it externally (like a capsaicin cream) or you can chew red pepper flakes or use hot sauce (Tabasco, hot salsa, etc). I can't tolerate any NSAIDS or aspirin, so I've had to learn how to deal with pain in other ways. Something else that really helps me is an amino acid called L-Histidine (I order it from Jo_Mar Labs in California). It reduces inflammation by slowing the breakdown of cortisol so you get an effect similar to taking a corticosteroid without the side effects.

As a rehab therapist I have butted heads many times with PTs over their protocols. It's very important to work only the pain-free range of motion, especially in the neck and back. I've had many PTs who adhered to the "No pain, no gain" theory and that has been proven totally wrong. Aggravating the injury will only make it worse. I would strongly encourage you to keep looking for both doctors and therapists who understand and respect myotonia and aren't basing their recommendations on a Wikipedia article!

Jan




Type of Myotonia: Thomsen's

Country: USA

Re: Contraindicated Medications

Here's a list:

Statin Trade Name

Advicor
Altocor
Altoprev
Atorlip
Baycol
Caduet
Canef
Crestor
Inegy
Lescol
Lipex
Lipitor
Lipobay
Lipostat
Lipvas
Livalo
Mevacor
Pitava
Pravachol
Selektine
Simcard
Simcor
Simlup
Sortis
Torvacard
Torvast
Totalip
Tulip
Vytorin
Zocor

Statin Generic Name

Lovastatin
Atorvastatin
Cerivastatin (withdrawn 2001)
Atorvastatin with Amlodipine (Norvasc)
Fluvastatin
Rosuvastatin
Simvastatin with Ezetimibe (Zetia)
Pravastatin
Pitavastatin

BETA BLOCKERS

Non Selective Beta Blockers

Propranolol
Sotalol
Timolol
Pindolol
Levobunolol
Nadolol
Metipranolol

Cardioselective Beta Blockers

Atenolol
Acebutolol
Metoprolol
Bisoprolol
Esmolol
Betaxolol
Nebivolol

Alpha and Beta Blockers

Labetalol
Carvedilol

Type of Myotonia: Thomsen's

Country: USA

Re: Pain and heart medication

One more thought...doctors often confuse the various myotonias. If your mutation was on the gene SCN4A rather than CLCN1 your AVNRT could be caused by the potassium issues related to those mutations. This article mentions electrolyte imbalances:

http://www.heart-consult.com/articles/what-avnrt

I'm assuming you've been checked for hyperthyroidism and told to restrict caffeine.

Also if your neck injury is around the sixth cervical vertebrae, that affects the vagus nerve which controls the heart rate and could be provoking the tachycardia.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Pain and heart medication

Jan, thank you so much for your response. You have a wealth of knowledge! I have a recogonized mutation associated with MC on the CLCN1 gene and an unrecognized mutation (that the testing lab thinks is non-significant) on the SCN4A gene. I will email you my results as soon as I can scan it all to send to you.

I do stay away from caffine. Regarding the thyroid, I developed a thyroid infection last year that first caused hyperthyroidism and now hypothyroid. I am currently being treated with Synthroid. It aggravated everything and really elevated my HR even more for awhile. They gave me Metopropol for the elevated HR, which I have since stopped.

Thanks for the references for natural treatments. I prefer them when possible. I will check on the location of the neck injury. It would be very interesting if that was causing and/or aggravating the HR issues.

Off to bed now so i can be functional for work tomorrow...

Linda

Type of Myotonia: Thompson's

Country: US

Re: Pain and heart medication

Hi,
There are currently 102 known defects in the SCN4a gene. About thirty (30) of them present phenotypically distinct disorders. Several of the 72 remaining were created in research labs to present very narrowly defined disorders for ease of testing. Because the bulk of
SCN4a defects are very rare and present with mixed symptoms, or with some mild symptoms
they may be cataloged as benign. Some symptoms consistent with Thomsens may be the result
the Sodium Channel defect instead.

Athena Diagnostics has a computer model that says that my SCN4a defect is benign but my delayed onset, Potassium Aggravated Myotonia has shaped my whole life and left me disabled for the last 12 years.

In response to your previous posts I suggested Dr. Stephen Cannon, he is still your best bet for good and complete treatment.

Type of Myotonia: SCN4a

Country: US

Re: Pain and heart medication

Joe,

I agree that the associations are sometimes incorrect. While we have a confirmed CLCN1 mutation that has caused symptoms of Thomsen's Disease all through my family, I recently had a test which indicated I also have a mutation (S524G) on the SCN4A gene. It is also listed as unknown significance, but I am very sensitive to potassium and one of my daughters has symptoms that are consistent with PAM or paramyotonia congenita. She is in a wheelchair much of the time but my other family members with Thomsen's don't seem to be affected by potassium at all and they don't experience the weakness that bothers us.

Is Dr. Cannon in California now?

Jan



Type of Myotonia: Thomsen's

Country: USA

Re: Pain and heart medication

Dr Cannon is Associate Dean of Medicine at the University of Texas Southwestern in Dallas.

Type of Myotonia: SCN4a

Country: US

Re: Pain and heart medication

Thanks, Joe. I emailed him and he responded right away. He said that the amino acid change is in a region of the gene that could impact the channel function. It hasn't been associated yet as disease-causing in research studies, but it would certainly explain our greater sensitivity to potassium and cold as well as weakness that isn't typically seen as much in MC.

Jan

Type of Myotonia: Thomsen's

Country: USA