Thanks, Al, for the reply. I'm just trying to think of anything that might help LB with his leg cramps. The meds just don't quiet get the job done. After I posted, I thought a heating pad might make the swelling worse so I just don't know. Thanks again.
My husband, Vic suffered greatly with leg cramps until a few months ago. We found that massage helped a lot. I used my hands but also bought a Wahl Massager and that was beneficial too.
His Dr had him on Baclofen, Gabapentin and Amytriptylene. He finally prescribed Zanaflex and that seemed to help as well.
I guess we're not really sure if it was a combination of massage and meds that did the trick. but in the middle of the night, with sleep far away. tha massge brought considerable relief. We are now weaning Vic off the Gabapentin and Baclofen as he really doesn't like to take so much medication.
I hope this helps you. Good luck with the cramps.
Wishing you all a peaceful and lovely summer day wherever you are.
Me again Terri. I was on the Baclofen as well and it didn't quite do the job. I got the Dr. to prescribe Quinine 300mg and went off the Baclofen. I very seldom get cramps now. Only if I overexert myself standing or walking. That's the only med that I use for cramps. I use Amytriptyline to help dry up the Phlegm in my throat. I was on 10 mg but just upped it to 20 because it was getting worse and I was coughing up crud every evening. Hope this helps too. Al.
Thanks for the replies. LB is only on Baclofen for the cramps. I suggested Quinine to the neuro but at the time he only wanted to increase the Baclofen. He did tell him to try drinking a glass on Tonic Water that contains quinine in it every night. I know the cramps must really hurt since he is willing to drink that stuff. Boy, does it taste terrible!
I also used the heating pad on Henry as well. Mostly on his legs. It seemed to help and of course we massaged his legs as well. Baclofen really helped him too. As Al said, keep it on low heat. Your nerve endings are more sensitive, and due to muscle and fat loss you have to careful of burning him. We also used a foot bath massager for Henry as well. This helped with his mobility and swelling. He really liked it too.
Al, you and Lee must be so excitd to have your kids home with the new baby. You will have such a good time spoiling her! The wedding will also be a great celebration. Are you looking forward to moving? It will prove to be a positive thing in the long run for all of you. Hope everyone is doing alright and staying cool. This is one summer for the record books isn't it? Take care all.
Hi Carol. The move will be better for me as it has a walk out or ride out as I will need. 1.6 acres so in the country the dogs will get more exercise and mayb I'll too. We can put in a porch lift if need be. All in all it should be better. We'll still able to leave town and not have to worry. Tara and Mario can look after things.
Terri. Tell the Doctor you want Quinine. Baclofen doesn't work all that well for ALS patients. I was at my GP's ofice this week and told him I had changed some of my doses of meds and he said I know what is going on with me so if I needed a change as long as it wasn't too goofy he would go along with it. He figures I know more about this disease than he does. I upped my Amytrytiline from 10 to 20 mg this week and he trusted my judgement on it.
I was getting more phlegm build up and coughing a lot. The larger dose of Anytryptiline seems to help. Don't be afraid to tell your doctor if you think you know of something that might be better for your symptoms. I live in a community of 350,000 and I am my GP's only ALS patient.
Before me he didn't know that much about it.
We are both quite well informed about it now.
Does anyone really believe that cramps are caused by deficiency of a drug?
If you do a Google search to find causes of cramps, you probably will find that the cause is possibly some kind of mineral deficiency. Things like calcium, magnesium, potassium, stuff like that. But don't take my word, do your own Google search.
For mineral deficiency, you can get a good juicer and drink veggy juices.
Look up Mercola on juicers to find the best juicer.
Then another possible cause is sleep deficiency.
The reason why doctors don't tell you these things is that they make more money prescribing drugs.
I have posted previously on the subject in relating the symptoms and action we have taken in dad's case. He ahd SEVERE cramps at the time he decided to go to a doctor to find out what's wrong... Since diagn of ALS, we had to think for ourselves and devise a plan of action. We did: clean-up body system via good healthy (ALS healthy, if there is such a thing) diet, strict regiment of antioxidants (with main emphasis on CoQ10 at 800mg) and NO calcium supplements at all. By tracing back his general history of body/muscle reaction to food and phisycal activity, we think that improper calcium processing was causing all the severe cramps. Bcause there is natural supply of calcium in the foods eaten, he has been taking trace mineral supplements - magnsium, zinc, copper and manganese. DRINKING LOTS OF WATER! Paying good attention to liver detoxing - via teas and milk thistle. A month after the start of the regiment, cramps have disappeared. Now, 5-6 mos later, the only time he may have an occasional cramp would be AFTER HARD PHYSICAL WORK with not enough food and water taken (he just can not overcome the old habit of working within reason, if he starts working, it has to be 16 hrs at the time with no thought of self). If you have a doctor, then have him run calcium test, to see how is your system working with it. Take the guessing out of it. If you have elevated calcium, then your muscles are being flooded with calcium, can not properly process it and it turns on the cells and kills them. Hence, cramps, nerve damage. That is one possibility - but a very important one, as it is considered one of the major ALS risk factors.
[quote:9746cba022="PALS Mike "]
I've read (in a few places) that magnesium/calcium supplements will help.
Staying WELL hydrated will also help.[/quote:9746cba022]
Magnesium/calcium supplements probably will help. Blaylock recommends magnesium supplements for motor neuron energy.
But the body gets nutrients much more efficiently from foods, as for example veggy juices. Dr. Wallach tells a story about people who took supplements all their lives and still had deficiencies. The reason why is the the body gets nutrients better from foods than from ground up rocks.
Veggy juices will also help supply the hydration. Perhaps better than tap water if the cr*p they put in tap water is a concern.
Veggy juices (raw and fresh) also provide some mega-powerful antioxidants. People with ALS need antioxidants.
But do not touch V8 juice with a ten foot pole. The "seasoning" in the list of ingredients is MSG.
Thanks for all the thoughts and suggestions. LB's blood test did show his calcium level to be slightly elevated. I've been increasing his fluids and watching the ingredients. Some nights are better than others with the cramps even though there doesn't seem to be any difference in activity or food and fluid intake. Hard to figure!