Tinnitus can be from a drug you took and not the myotonia.

Yes it can... However mine is not, as I was never on any medications. Since I had no predisposing factors, and could never determine why my ears rang, this seems to be a fairly solid lead - at least to the RN (and amateur detective) in me! lois

Hi Lois,

I was talking about not meds for Myotonia Congentia but ones dispensed by the doctor like Cipro, Avelox, Leviquin, Factive. All from Bayer that are antibiotics. Hugs.

I can't believe those drugs are still on the market. There are many lawsuits and proof that they can cause ruptured tendons...I'm helping someone with rehab therapy right now who has damage from long-term use of quinolones (Cipro in particular).

I would think it would be particularly dangerous for someone with MC to use them, not only because of the tinnitus, but because our muscles can contract so strongly we would be much more prone to tendons rupturing.

Anyway, back to the medications...if you do a search on ototoxicity there are lots of drugs that can cause temporary and permanent tinnitus and hearing loss.

However I think it's so common for those of us with MC to experience this (almost everyone I know) that in our case it starts with the tightness of the sterno-cleido-mastoids in particular and that's why it can manifest at such a young age. In "normal" people the syndrome may start after a whiplash injury that causes constant spasms of the muscles.

Jan

Jan - At least in my case, I agree with your evaluation. First of all, I've not taken a lot of Abx in my life, and I'm allergic to sulfa drugs, so also avoid the quinolones. And since I've had the ringing for as long as I can remember, I can fairly confidently feel it is not from any drug effects, since I've been on almost no meds my whole life. You know what I wanted to ask you - ever since I was quite young, I have had what my mom called "twitches", but they were (and are) more like compulsive clenching and contorting of my facial and neck muscles. I might go months, or even years, not doing it, but when there's any excessive stress in my life, it's almost like I begin doing it like autistic kids do certain self-soothing behaviors - once I start, it takes supreme effort to stop the habit. Right now, between the work injury and its sequelae, the "almost move that didn't happen", the wildfires, and the process of buying a new business, I'm surprised my face and neck don't look like the Hulk!!! Have you ever heard of this, or is it truly just my own private neurosis? :) lois

Lois, what you're describing sounds like hypomagnesia. This can occur during times of stress or even excess physical exertion.

I think we are prone to losing magnesium anyway because of the constant muscle contractions. Too much can actually lower blood pressure and make your muscles feel floppy, but if you can find the right mix it can really help with the muscle cramping and spasms as well as the more dramatic twitches and contortions.

The best form I've found is magnesium citrate. You can find this at the health food store, in pharmacies in the laxative section (green coke-bottle looking container) or you can buy inexpensive magnesium carbonate and mix it in a citrus juice.

Whatever form you use, it takes very little to see a difference - too much will give you diarrhea. I take it a couple of times a week to deal with foot and calf cramps from myotonia.

There is an old study (1950) on MC and magnesium which concludes that it had little if any impact on myotonia, but the form is important. And a good balance of the other electrolytes is also important. I usually increase my salt a bit if I'm using magnesium.

You might want to get a blood test when you're having episodes of spasms and see if your serum magnesium is low. It's not always an accurate picture of what's going on in the cells, but it would be good to know if it's severe enough to show up as a blood deficiency.

Jan

Hi Jan - Just what I crave - that awful mag citrate bowel prep - eeewww!!! but it will be interesting to see if tiny amounts help both the facial/neck stuff, and the cramping in my left calf that is driving me bonkers! I have slightly increased my salt intake - not happily, but dutifully. I tend towards rather low BP anyway, but in recent years it is more in the normal normal range than low norm, so I'll be OK... onward, Lois Lab Rat!

Lois,

You don't have to take that awful liquid. I use magnesium citrate capsules made by Thorne Research. Each capsule contains 140 mg of magnesium (as magnesium citrate). Thorne's products are supplied in capsules so that extraneous ingredients like binders, coatings, or allergenic ingredients can be avoided. While Thorne says that their products are available from pharmacies and health professionals, I order my supply directly from the manufacturer. Their toll-free phone number is 800-228-1966. Concerning mail orders, Thorne says that its products are available to licensed health-care practitioners, but as a convenience to their professional customers, they do provide a limited number of products to consumer patients. They require a $30 minimum order.

Cheers,
Anne H. pharmacist

Anne, thanks for posting the information. I really like Thorne Research products and trust their quality control.

Jan

Yes, Anne - Thanks - and maybe, as a licensed health care professional, I fit into their profile anyway! : )
lois