understood

i dont condone the abuse of alcohol.enough said
thank you for your continued support

Type of Myotonia: dw307,2

I wanted to thank you all for your reply regarding issues on medication, i've forward everyone suggestion to my physician & will evaluate it asap, I wanted to THANK YOU & JAN for this very helpful web site, I feel extreme relief knowing I'm not the only one...

From the other side of the equation, I'd just like to say that, while I almost never drink alcohol because I don't really like it, on the rare occasions I do, I find it makes me stiffer - maybe the sugars and high carb content, don't know. I only know that, besides headaches and weariness, I also get more stiff and tight-feeling. lois

My experience regarding cold weather & summer is that I tend to move faster in colder weather, I dislike the cold very much & summer I tend to do much more as far as activities doing to much, but you agree that mentially you need to stay positive and that your community environment plays is a big part, ex: I'm from NYC (not in best neighborhood) totally stress worry about condition to much currently I'm vacationing here in Greenup, KY warm & very quiet, go figure it's such a place point being drinking/drugs may take you right out of your normal cycle, what is your opinion on muscle relaxers.

Howard,

I'm curious, too, whether anyone has seen a difference with various muscle relaxers. Many years ago a doctor gave me Librium (like Valium) without telling me what it was (we were in the military and they didn't put the name on the bottle). I took a dose, went to the grocery store and was so RELAXED I ran into a parked car! That was the end of my experiments with "relaxers" but I was so out of it I can't even remember if it helped the myotonia.

The newer drugs like Flexaril and Skelaxin are often prescribed after injuries for muscle spasms, but I have never seen them recommended for MC. They probably don't affect the function of the chloride channel.

One of my daughters has used a tincture of Lobelia, an herb that is often used as a muscle relaxer, and she says it helps with the stiffness. It is very powerful and you can overdose on it, so you have to follow directions carefully.

Glad you're getting a vacation away from NYC. Kentucky is beautiful -

Jan

I was prescribed elivals 25 mg taken with food 1 time per day, I assumed it was my inability to relax thoughtout the day, I experience tightness especially in the shoulders and thighs area, in the beginning I was having dry mouth and need to consume lots of water, I could testify I had no joint pain whatsoever, but due to this unwanted tensity I also need a sleeping pill to get hours, I still have a one shot experince sleeping without the sleeping pill I only sleep a couple of hours, amazingly feeling fresh but it 2:oo a m I'll go back with ambiem 12.5 mg to sleep and then feel extremely tried even after sleeping until 8:00 a m very stiff and weak, it's a very fine line between rest and over excertion.

It's a great day I turn 49 years old today and feel great, Jan I stuck it out, your diet was extremely hard but I did it and feel good, although as my doctors professional opinion on potassium, you need not totally stay away from potassium but it's very important to monitor your levels when this ingredient is in your medication (s), we must look at M. C. as a totally separate medical issue, focus other issue like sugar, high blood pleasure could trigger our symptons as well but diet and it's adviseable to seek a physical therapist to adminster the proper exercise techiques as needed.

Hope you have a wonderful day celebrating - I'm so glad that you're feeling better.

Thanks for the feedback on the diet. It is very hard but worth it when you feel the stiffness letting up. I can even run up a flight of stairs these days.

Jan

Hi - Happy Birthday, Howard. I am also from NYC, though I've been away for years. I just wanted to say that neither Valium nor Elavil are muscle relaxers, per se. Valium used to be the drug of choice for "stressed out housewives" in the 60's - it is anti-anxiety, and is so potent that it relaxes your mind and body into euphoria. (Remember the Rolling Stones' song "Mother's Little Helper", about the little yellow pill? - THAT was Valium!) It is highly addictive, and very difficult to wean off of. The same is true of Elavil, which is a mood enhancer/anti-depressive (Does your doctor REALLY believe you have MC???), NOT a muscle relaxer like Flexaril, and it WILL dry your mouth up a lot - and potentially cause some serious problems, like parotid (salivary) gland tumors, which I have personally seen. It is also extremely addictive, and very difficult to wean off of, so unless it is really helping you a lot, it's not a drug to mess around with. Also, have you tried Melatonin for sleep? It's a natural hormone, released by the pineal gland, and is affected by the light/dark cycle. It is sold over the counter in drug and health food stores. It works pretty well, but if you take it too late in the evening, you may feel groggy the next day - I usually take it at least an hour before I want to go to sleep. I also sometimes take a sleeper, like Lunesta. Most of them don't work for me, or only for a couple of hours. The only one that works really well for me is one that gives elderly people hallucinations and makes them disoriented - so I guess I'd better get PLENTY of sleep now, so I don't need any when I'm in my dotage!! Hope this info helps - Lois

Thank you for the your feed back, you hit alot of my issues I have today, my one-shot sleep ordeal, I know the elavils prescribed is base on my chonic neck pain (degenerated disk), ??? my body is so tense that I'm unable to sleep & the main reason I was prescribe ambien cr 12.5 mg, I guess the elvavil does relax me but again I just don't like the down feeling though out the day, I started working on a tread-mill along with Jan's diet is working fine thus far, but this also is a change of enviroment NYC vs. KY, I'm looking forward to returning home to see if this course is best overall, Is it safe to say that our condition of M. C. should be base on our own enviromental condition / community ex: In NYC I live in a 3 story walk-up, carpet though-out feel tried, weaker and extremely fatique, KY is a house walk in no carpet less stress especially in legs, this is why now I'm on tread-mill to set just enough exercise to get some mobility after sleeping all night as well, hope to get different daily conditions to compare with.

Hi Lois

I'm very sorry in returning your message, you was right about the elavils, I guess it was prescripted due to my extreme pain in my neck, I suffer beside MC degenerate disk in 2 of 9 spots in my spine, my neck is killing me everyday I experience constant pain, I try physical therapy and if fatique I get very stiff & weak, I'm totally stress out but coping, you suggested Malationin I saw it but didn't know what mg. to purchase LOL got 3mg no effect, do you recommend 5 and how much do you take .

Hi Howard - Jan will have to corroborate this, but at least partly, I would have to say that it isn't the walk-up, or carpeting - it's the stress level. I grew up in Manhattan, lived there until I was 22. I never knew what was wrong with me, so had no way of knowing that the achy, stiff, tight way I felt much of the time was MC. But I will say that when we went to our house in the country on weekends and summers, I had a lot less of the tightness and tension. Don't forget, NYC keeps even its biggest fans constantly on the alert, and ready for "fight or flight", the very thing that exacerbates our symptoms the most! It's a very thrilling place to live, but can really wear you out! Also, I really feel as if the pollutants in big cities affect us - they are poisons for everybody, but we are extra sensitive to things. If you have a little extra cash, maybe try a HEPA-filtration air cleaner in your apartment, to give your system a break while you're home and while you sleep. They have some that are fairly small, inexpensive, and can moved from room to room, if you are lucky enough to have a big place. Best to you - Lois

Asolutely I have the pleasure of both living in the city & a retreat to the country enviroments, you are right it's just not stairs & carpet but like in NYC we walk, carry everything because of the access, but here in the country immobility is my worst enermy, I sit at the computer, legs get weak, or sitting watching T. V. for more than 20 mins. But the stress is very important in my case it's important to watch my weight (150lbs)and try not to deal with stress which lol comes from family members and my cordinated lifestyle, most call me a neat freak but I can't go back twice or rearraigne items all day. Thank You for your reply and please continue to open up on lifestyles...

Hi Howard - Melatonin usually helps at 1 to 1 1/2 mg, and 3 mg is considered the maximum amount needed for sleep. So if you have gotten the 3 mg tablets, and they haven't helped you, I would NOT suggest going higher. My primary care doctor is a firm believer in what he calls "sleep toilet", (in medicine, the term "toilet" means a set of processes which results in a therapeutic effect). Anyway, in this case, it means not eating for several hours before bed, not exercising or exerting yourself before bed, beginning your bedtime routines at the same tie every night, and doing things which relax and soothe you. For instance, watching TV in bed is frowned on, because it is a passive way to grab your attention, and keep you awake. Reading for a while, to calm you, make your eyes tired, and relax you helps. (I also used to like to do crossword, word-find or other puzzles). Then turn off the lights, make sure it's quite dark, and try to relax. Slow breathing exercises, mantras or repetitive chants, or something like counting sheep (i always like trying to name as many of something (Motown songs, colors, breeds of dog, whatever) as I can, and that will often result in me waking up the next morning wondering how far I got. sometimes some of the herbal teas (I like Celestial Seasonings Tension Tamer or Bengal Spice, and Tazo Calm) also are very soothing. But if you have real pain issues, those can really get in the way. Have you tried one of those foam neck pillows that conforms to the curves of the cervical spine, or a neck brace? And have you considered accupuncture or other pain relief modalities? Do you take Glucosamine/Chondroitin for your joints and disks? And has your PT given you therapeutic home stretching exercises? Well, I guess I'd better shut up now! I talk too much! Lois

oops - that was supposed to be 'the same time every night'! sorry! lois