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Re: How much of this might be psychological?

Suzi,

When I had severe myotonia all the time I tended to be okay with the first couple of steps and then my legs would freeze. I think that's fairly common. But if you let the stiffness subside, then you should be fine as long as you keep moving. If you stop for a minute, you have to go through the cycle again.

I also had problems swallowing. Certain foods were worse than others...for instance white meat or nuts. These foods are very high in phosphorus and zinc, and they tend to cause smooth muscle contraction so your esophagus can go into spasms. If the skeletal part of your esophagus is contracted from myotonia, then the smooth muscle section clamps down from the phosphorus, it can really get scary! I refused to eat peanut butter as a child and everyone thought I was weird. Taking zinc supplements can also increase smooth muscle contractions.

However, what you're describing sounds a bit more like paramyotonia congenita than MC. With PMC your muscles get worse as you warm up rather than better. It is a progressive condition, whereas MC tends to be pretty much the same throughout your lifetime unless external factors such as herbicides or certain medications further inhibit the chloride ion channel function. People with PMC are more affected by cold in general.

The HKPP.org website has lots of good information on paramyotonia. If you haven't read through it, you might want to read the descriptions and treatments.

Myotonia can be affected by our emotions and reactions, including thoughts. That's because adrenaline makes it much worse. So if you are startled, anxious, angry, worried, etc, you will be worse. You can learn to control those response in various ways. The best that I know of is through a good biofeedback technician. You can actually see how your emotions are affecting your heart rate, body temperature, etc. You use deep breathing and controlled thoughts to stop the cycle of adrenaline response.

For me the combination of biofeedback training and diet totally changed my symptoms. I am almost never stiff now, and I can run up a flight of stairs without even thinking about it. The anticipation of "freezing" can actually cause it to happen. We each have to find our own way of dealing with it...for some medication makes all the difference. But if you do have paramyotonia the treatment might not be the same for your set of symptoms, so it's best to get the DNA testing and know exactly what you're dealing with.

If there's any way you can get to the MDA clinic at the University of Rochester Medical Center in New York, Drs. Tawil and Griggs are the experts on sodium and calcium channel myotonias.

Jan

PS - I don't have time right now to go back and read through your back posts, so I can't remember what happened with your DNA testing. Also I wasn't sure which meds you're taking now, but since you do have some other conditions besides MC, those things may be influencing the amount of stiffness you're experiencing.

Type of Myotonia: Thomsen's

Country: USA

Re: How much of this might be psychological?

Jenna and Jan,

Thank you for your responses.

I am taking medicine... mexilitine 150 mg 4x a day. As well as ambien 10mg, 5 mg of melatonin just to sleep.
The mexil worked for a while but i think my body has developed a resistance to it.

I go to the MDA clinic in Jackson MS my next appointment next month. But the Dr there will NOT do the DNA testing. He keeps saying that there is no reason for it. That he knows it is MC and the type doesn't matter because they are treated the same. He is the only Dr at this clinic that works with MC.

Other conditions I have are ulcers, low functioning gall bladder, arthritis in my left knee, and I am obese.

Thanks again,
Suzi

Type of Myotonia: unknown

Country: usa

Re: How much of this might be psychological?

Suzi, they are definitely treated differently. Here is a section from the PMC information page on HKPP.org:

What medications are prescribed for PMC?

Treatments for PMC must be individualized depending on symptoms. Patients must learn to 'read' their symptoms and take the appropriate management steps to lower or raise potassium levels as needed. PMC probably presents the biggest management challenge of all of the periodic paralyses and requires both flexibility and a team approach between patient and physician.

The medications prescribed depend on the type of PMC the patient has, and if the patient has another type of periodic paralysis as well as PMC. The carbonic anhydrase inhibitor 'Diamox' (acetazolomide) is often prescribed for the other periodic paralyses, but may make a PMC patient's symptoms worse. Diuretics which reduce the level of potassium in the blood are often used in PMC, especially when it is accompanied by HyperKPP. These are drugs like the thiazides (Hydrodiuril, hydrochlorothiazide) or furosemide (Lasix). Florinef is used occasionally when the patient needs to retain sodium and fluid as well as excrete potassium. Low doses of Mexiletine (Mexitil) and Paxil (paroxetine) are used to help reduce myotonia. Potassium supplementation often is helpful in cases of PMC, even when patients take diuretics to help them excrete potassium.

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Did you send a sample to Dr. Lehmann-Horn's lab in Germany? It's free but takes several months.

I seem to remember Melatonin really increasing stiffness for me. I'd have to study it to figure out why. On the other hand Ambien is supposed to increase chloride influx into cells, so if you had MC that should help you feel better. It would not impact a sodium ion channel disorder like PMC.

There is a caution about Ambien and Melatonin taken together on drugs.com:

zolpidem ↔ melatonin

Applies to:Ambien (zolpidem) and melatonin

The concomitant use of melatonin and benzodiazepines or nonbenzodiazepine hypnotics may result in a transient enhancement of sedation and impairment of memory, coordination, and attention within 1 hour of coadministration.
----------------------------------------------
There was no drug interaction listed with the combination of 5-HTP and Ambien. That might be a better alternative. You would want a formulation that contains B6 along with the 5-HTP.

Have you taken magnesium? That will also help with myotonia, pain and sleep issues. You can start with 200 mg or so and work up slowly. Stop at the level that gives you loose stools. Licorice Root extract is a very good treatment for ulcers and it also gets rid of extra potassium which improves myotonia. If you are taking pain-killers, you can use a capsule of licorice root extract every time you take a dose to protect your stomach.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: How much of this might be psychological?

Suzie:

They are treated in similar fashions, but as Jan pointed out, not exactly the same way. There are enough differences such that treating treating one as if it were the other may result in unoptimized treatment for the individual and cause them to have to endure things they don't have to endure.

Personally I've found that knowing exactly what I have down to the mutation has had a big positive impact on me because I feel I'm no longer in the dark as to what to expect and how to best manage my symptoms. I also like being able to research my specific mutations. It's also enabled me to correlate some symptoms I have that are not in the literature, with two other people with the same mutations I have. In the future, I expect there to be mutation specific treatment options.

Additionally, some people have more than one myotonia causing disorder. Cases of people with both chloride channel and sodium channel myotonia have been documented, as well as people with myotonic muscular dystrophy and chloride channel myotonia. Sometimes mild forms of myotonic muscular dystrophy are mistaken for MC until the later decades of a person's life when more multi-systematic symptoms manifest, and then there are more unusual disorders that can cause myotonia like symptoms. A few people with myotonia have their results come back negative for any known myotonic disorder, and the cause of their symptoms is still a mystery.

If you feel knowing exactly what type of myotonia you have will benefit you in some way, then I would ask to see another doctor. Any doctor can actually order the testing. The issue is paying for it. If you need to see an MDA doctor to have the MDA pay for it, then request to see another MDA doctor. If you have private insurance, then you can get the testing through your primary care physician. They just need to fill out the Athena Diagnostic order form, check the right box, and you go get the blood drawn and they ship it. A few weeks to a month later you should have the results.

Type of Myotonia: Becker

Country: USA

Re: How much of this might be psychological?

I have Becker's MC which is known for transient weakness in joints like the knee and elbow. I have had experiences similar to yours Suzi where I am walking across an open space and suddenly feel like I cannot take the next step.

In reflection it seems to me to be caused by anxiety experienced by myself, which causes adrenalin to be released into my system and that in turn aggravates the MC. At the back of my mind I am aware that I could suffer a knee joint giving away or my muscles simply seizing up; this is the source of my anxiety felt most accutely when in the presence of other people - especially strangers.

I've developed coping strategies to help, they are not perfect, but I have not had an actual fall in many years so they must be good for something! The key is to remin relaxed. I use a walking stick to let others know that I have a mobility problem too, it seems to lower their expectations whilst, in most cases, increasing their consideration for me.

Type of Myotonia: Becker's

Country: England

Re: How much of this might be psychological?

To add to that...it occurred to me today that I usually have more of a problem in situations where I feel I need a finer degree of control in my load bearing muscles, ie my legs. If you imagine the degree to which most people can contract their muscles ranged from 0-10 with increments of 0.1, imagine in my legs, for less than mild movements, I only have increments of 3. I believe that at any given time there are also 4 abnormal phenomena occurring in my muscles.

1. Myotonia (Stiffness/cramping: due to poor chloride conductance)

2. The warm up effect (The illusion of normal function: due to metabolic poisoning?)

3. A depolarization conduction block (Weakness: Pathology unknown)

4. A compensation mechanism against the depolarization block (Something about an abnormal pattern of muscle fiber activation)

This collimates in strange things that only I and the likes of others such as my self can understand.

Type of Myotonia: Becker

Country: USA

Re: How much of this might be psychological?

I have the same thing, especially crossing big, wide open spaces. I figured it out that it's all anxiety. I get so worked up that I have panic attacks. As much as I try to tell myself not to stress about a situation, I still do, so it totally affects my ability to get around successfully. Seems to me that it comes in waves as well, as sometimes I'm "OK" and other times, I get so anxious that I am literally pouring with sweat as a result. Sometimes the cane wouldn't even help me because I was so worked up with the fear that I was going to fall in the middle of a big street or in front of people and ultimately hurt myself again.

Country: USA

Re: How much of this might be psychological?

Rolma,
Turns out you may be right. I saw a new MDA Dr yesterday. She also agreed that it is anxiety. My MD just put me on an antianxiety med a few days ago for other symptoms. The MDA Dr said that it should help this also. I sure hope it does. I will let you know.
Suzi

Type of Myotonia: ?

Country: usa

Re: How much of this might be psychological?

Suzi,

were you having the same symptoms? I find that the anxiety really gets bad if I have to go around someone on the street because I'm afraid of them bumping into me and also that I'll fall in front of them. My husband doesn't understand it, but then again, he doesn't have to deal with what we do on a daily basis.

Country: USA

Re: How much of this might be psychological?

Rolma,
Yes, same symptoms. I was a a convention this weekend and had stopped to talk to someone when they left I was left standing there not being able to move I saw a friend and called him over and asked him to help me get to a seat. Thank goodness he was there.
The new meds have helped already with less panic attacks and better sleep. The MD said I would see results in two and a half weeks But I saw results in a few days.
Suzi

Type of Myotonia: ?

Country: usa

Re: How much of this might be psychological?

Suzi,

What did they put you on, if you don't mind me asking.

Country: USA