This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear MS community-

Please advise on how to help my husband, recently dx last March. He has difficulty staying asleep, due to painful spasms at night. The baclofen prescribed isn't effective.

It seems as though there's a vicious cycle going on, related to interrupted sleep cycles, leading to fatigue the next day. He's just plain zonked all the time. Amantadine and ginseng and caffeine get him thru the day, and he falls asleep easily at night. Then the spasms start up, and he's awake.

The loss of his previous life as an energetic, do-it-all kind of guy is the most heart-wrenching part of this illness. I worry for his spirit.

How can I help? Any ideas from this learned community?

Best,
an aging cheerleader

Is your hubby currently taking any of the interferon drugs (Avonex, Betaseron, Rebif)?

If so, stop the Ginseng. The interferon is trying to tone down a piece of the immune and the Ginseng is trying to ramp it up. Not a good mix.

_________________
Carpe Diem

Smoke some mj, it will help the spasms.

_________________
Had ms for over 19 years now.

Thanks, guys-

Hubbie's on Copaxone, so the ginseng shouldn't be an issue. He's also taking antioxidants and Lauricidin (which is an antifungal/antiviral compound) He started out last March with fungal infections, high liver enzymes (10x normal) numbness and tingling on left side. Liver numbers are now normal (milk thistle), and fungal stuff gone. Numbness and tingling gone, but clonus and spasticity remain. He's OK during the day, can deal by distracting himself with work, exercise. Nighttime sucks.

We've had friends offer MJ...we're kinda straight Presbyterians , but that option looks better everyday.
I'll keep you posted-
AC

Use the MJ. When I was first dx'd (and still because of bladder issues) I could not stay asleep and got only about 2-4 hours per night, and not in a row. It sucks. This is what works best for me:

~Quit drinking liquids approx. 2 hours before bedtime. Cut out caffeine after 12 noon.
~Smoke marijuana before bed.
~Get on Lunesta for a while. I did that initially and it really helped until I learned all the other "tricks".
~Take 2 mg of diazepam (Valium). This is a way low dose. A regular valium is 15-20 mg, but it does help.
~Upon waking in the middle of the night, do what has historically helped you fall asleep. I used to read every night and would fall asleep usually before one page was done. Doing it at 2am after waking is also effective for me so whatever he did, tell him to try it even in the middle of the night.

This is just what works for me, but his sleep patterns sound just like mine were. I can fall asleep faster than anyone I know, but I would wake. I still wake 2-5 times per night, but I'm now so used to it that I normally fall back asleep pretty quickly. When I was in your husband's spot (early on) I would dwell on everything when I woke up and that compounded everything and made me stay up for hours at a time. That's where the Lunesta came in. Now that I'm "used to MS", I don't use the Lunesta, but it does work and you don't feel all tranquilized.

The rest of what you say sounds soooo familiar. I still work a pretty demanding job and I still exercise even though it's getting harder to do. Tell him to stick with it all until he can't do it anymore. From the advice of our good bud Robbie, don't let him pull his hat out of the ring until he absolutely can't do it anymore because there may come that time, and you'll wish you'd "stayed in" up to the buzzer. That time may also not come, but as the MS gods say "Hope for the best, but prepare for the worst". Try to not let him get too frustrated in the sleep cycle he's in. I know just how he feels. You can't tell if your disease is getting worse because you never get enough rest. It passed for me, and may come back, so maybe it will pass for him too.

Try the MJ/Lunesta combo. It really jump started me into getting more sleep. Don't guilt yourself about pot. It's milder than booze, and yes, I know it's illegal, but only because man made it so.

If he is a resilient guy he will regain his spirit. I am a former "superman" myself. Super athletic, lots of hours at work, always working on the house and yard, always the dad rough housing with the kids, all of it. It's very difficult, but not impossible, to find a way to smile again. I won't kid you, it waxes and wanes for me, but I'm just now getting used to it a bit. I virtually had no "real" symptoms, save my eyes and bladder, for years up until about a year ago. When I say real, I mean more than just a pain in the ass. You both will learn a lot about yourselves and what your relationship is based on. Just make sure he feels wanted. You tend to feel worthless and there were times that the only thing that kept me going was my wife telling me how much she still loves me.

He is not worthless, but he needs to take that in and really feel it. You sound like you love him a lot, and if that's the case, he's already got an ace in the hole. There is no substitute for a good, loving support team where you can talk about, and not feel like you have to hide, your illness and what's going on with you. Keep fighting the good fight.

Lew
Dayton, Ohio

I take amantadine morning and night, and when I was having trouble sleeping I was advised not to take it after midday – combined with your husband's caffeine intake, it may be contributing to his problems.
It would be wrong of me to suggest that you abandon your moral beliefs, but sometimes the desperation of living with a disease like this, where so little help appears to be on offer, means you are forced to bend the rules a little bit just so you can carry on. I think very few people would criticise you for doing that,

_________________
Dom

muscle stuff: lots of magnesium (400mg daily http://alternative-medicine-and-health.com/conditions/msclerosis.htm), phosphorus, potassium (low mg -> reduced potassium)
nb: caffeine makes you pee out lots of mg.
also, magnesium in multis or blends can get tied up in interactions, take an extra mg supp away from any other supps.

http://ods.od.nih.gov/factsheets/magnesium.asp

more info. tough to find mg+ms-only studies, crap sample sizes, and the third is from med hypotheses, but still good reading

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=2353567&dopt=Citation


http://www.blackwell-synergy.com/doi/abs/10.1046/j.1468-1331.2000.00142.x


http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=11425281&dopt=AbstractPlus
[/quote]

Hi Cheerleader
it's a truly vicious cycle, been there worn the t-shirt for a few years. I did have an improvement after a while, but not due to anything I was doing I don't think, just the MS decided to give me a breather for a couple of years.

I agree with the others, lose the caffeine and ginseng fast. Ginseng is immune stimulating and would potentially have a possible effect of increasing MS activity - obviously I'm not a medical person but have read about immune boosting properties of ginseng and why that is counter-productive in MS. I took ginseng for a while, about 5 years ago and it did seem to rev up the MS. I know how temptimg it is to go for the strong coffee to wake yourself up, nearly essential sometimes, but it really effected me - I discovered the less I had, even early morning, the better I slept at night.

I found a dose of Rivotril 0.5mg worked a treat for the spasms/pain and gave me a heavy sleep, but I did feel hungover the next day. I used to occasionally take it to just have a break from the spasms and twitching and pain.

And the MJ works the best of all if you can get some pure stuff! The way I see is it is that most meds come from herbs, and if it helps, and you've tried all legit routes, what's the harm.

HOpe things really improve for your husband soon.

Sometimes while sleeping, I have muscle spasms that seem to literally lift me off the bed. I'm currently on 90mgs of Baclofen per day as well as Lyrica and Amytriptiline. This combination seems to relax my muscles where none of them worked well enough when taken individually. They also help to relieve my severe muscle tension headaches.
Terry

hi Chearleader, there is also a drug called dantrium that is used in CP patients that have a lot of spasms. His nights might be better. Stretching is also recommended to prevent the spasms. Good luck. Carole

more mg stuff... q: are they leg cramps you're asking about?

What are idiopathic leg cramps?

A cramp is a transient, involuntary episode of pain, usually sustained for minutes (up to 10 minutes), in which whole muscles or muscle groups go into spasm.

Idiopathic leg cramps are the most common type of cramps and involve the calf muscle, thigh muscle, and small muscles of the foot. They occur at rest and usually at night.

It is probable that leg cramps occur when a muscle that is already in a shortened position is involuntarily stimulated. This commonly happens at night where the plantar flexed foot places the calf and ventral foot
muscles in the most shortened and vulnerable position.
[McGee, 1990; Riley and Antony, 1995; Kanaan and Sawaya, 2001; Salih, 2001]
What are the secondary causes of leg cramps?
Medical conditions

Conditions that may cause cramps include:

Metabolic disturbance (e.g. hyponatraemia, hypokalaemia, hyperkalaemia, hypocalcaemia, hypomagnesaemia, hypoglycaemia).

Thanks for all the replies-
I was away from my computer this weekend, out of town for a bridal shower, and it did my heart good to see all of the responses when I got back. My husband slept by himself for the first time since dx this weekend. Took the sheets clear off the bed. His spasms are in all limbs, not just legs, and he also gets airborne sometimes. We'll look into all suggestions.

I have been lobbying to get rid of coffee since my husband's dx. It's tough, because he's really afraid of the fatigue, and the caffeine is a crutch. I don't want to become the naggy wife, but I would love to get him off it. I will get rid of the ginseng. He's on a magnesium/calcium supplement.

He has hyper-toned muscles in his arms and legs, and clonus results. Sometimes I can actually see the muscles contract and ripple. We'll look into stretching. I think PT might help, as well. We're certainly not too moral to consider MJ...the Presbyterian aside was more of a joke. I think medical MJ should be legal, and available to all the could benefit from its natural healing properties.

I really appreciate the encouragement and thoughtful words. I'm so thankful to have a forum to ask these questions. His drs. just write new prescriptions. I've become a google queen, trying to make sense of this non-sensical disease.

With warm appreciation,
AC

Jimmylegs-
Thanks so much for all the magnesium info. I will look into getting a supplement that is not tied to another one, and will explain to my hubby that the coffee is making him "excrete" this very valuable mineral.

Found the following on a nutritional health site-
http://www.nhfw.info/multiple-sclerosis.html


Symptoms of MS that are also symptoms of magnesium deficiency include muscle spasms, weakness, twitching, muscle atrophy, an inability to control the bladder, nystagmus (rapid eye movements), hearing loss, and osteoporosis. People with MS have higher rates of epilepsy than controls. Epilepsy has also been linked to magnesium deficiencies.

Here are some interesting studies on multiple sclerosis and magnesium:

In a 1995 paper published in the journal Acta Neurologica Scandinavica, patients with multiple sclerosis were found to be low in cellular magnesium.

In a 1994 study from researchers at the Department of Physiology, State University of New York randomly selected hospital patients, compared to a control group of health volunteers the hospital patients with coronary heart disease, rectal cancer and multiple sclerosis exhibited extracellular deficits in ionized free magnesium.

In a 1990 paper published by researchers from the Wakayama Medical College, Japan, magnesium (Mg) concentrations were studied in the brains of 4 patients with definite multiple sclerosis (MS) and 5 controls. The central nervous system tissues and the visceral organs, except for spleen, of MS patients showed significantly lower magnesium values than that seen in control cases.

In a 1986 paper published in the journal Medical Hypothesis, A group of young patients having MS were treated with dietary supplements containing magnesium, calcium and vitamin D. The results showed a decrease in the relapse rate compared to what would have been expected based on the patients prior history of symptoms.

In a case report published in the European Journal of Neurology, a patient with MS treated with oral magnesium glycerophosphate therapy, showed significant improvement after only one week of treatment.

-Aging Cheerleader

i am REALLY glad you are finding that info useful, C, because i gotta say it seems to be working wonders for my throat function. it is UN. BE. LIEV. A. BLE!