Need help fast–muscle spasms

Hi Shannon,

I’m not sure how much help I could be — but I wondered what / if he was doing something “nutritionally”. –??– I saw your list of medications, and you mentioned that he recently started exercising strenuously…and then the digestion issues… well, it must makes me wonder what kind of nutrition / supplements he’s having to support all this.

The last thing I want to do is leave the impression that a vitamin is the answer when someone is in so much pain — but nutrition is the first thing that I go to when my body is not reacting the way I expect it should.

Are these spasms like “charley horses” — or are they different?

Jann

Sorry Shannon I can’t help you much. It was probably the exercise that started it all. Make sure he is well hydrated lots of water or Gatorade for the potassium also eating bananas if he has no potassium issues. Also to let you know I take 75 mg of Lyrica twice a day and 150mg at bedtime and Ben is worse then I am so you should mention to his DR if the Lyrica dose is the right dose for Ben. With the summer heat we get dehydrated easily and also caffeine dehydrates you. I know people mention before also my DR about Tonic water tastes terrible but she suggested to add orange juice with it.

If I can think of anything else I will post.

Sue

Shannon I also find on the internet that reduced levels of magnesium or calcium in the body can cause muscle spasm.

Also from one website it mentions
# Have you been vomiting, had diarrhea, excessive sweating, excessive urine volume, or other possible cause of dehydration?

[url]http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm[/url]

Sue

PS: Also check here [url]http://www.realage.com/research_library/searchResults.aspx?link=crsfiles/aha/aha_musspasm_sma.htm[/url]

Shan, ask his dr for requip for the restless legs. it does wonders for my hubby. If the pain is like a muscle spasm Ben needs to increase the fluids and try pickle juice-it has worked well for me these last few days. How is his salt intake? Try to get him to increase it to see if that helps. There are somethings that might work for me on one day and not the next, its just like meds always trying different ones to get the relief. Can he increase the lyrica dose? 50 isn’t enough, should be higher to relieve the pain. Please give Ben a Big Hug for me and have him rest, i know its easier said then done but the viscious circle won’t end unless the muscles and nerves can rest enough. Big Hugs to you for standing up for your man!

Hi Shannon,
I have no info to offer, but lots of encouraging wishes! You are a great girl for the care that you give to Ben. One day things will be well I know it, they have to be!

Just a silly thought, could any of the meds themselves be causing the cramping?

Try to have a nice weekend, maybe go to the taste or something and enjoy the beautiful weather!

Dawn 😮

Just another thought in reference to your comment that he is doped up. He is taking a very interesting combo of drugs, it is no wonder he is passed out. Could he possibly increase his lyrica and drop the valium and dialadid? (spelling) I hope you guys get some relief!

Dawn

Just wanted to say this sounds a lot like when my son’s potassium level dropped to almost zero. Tell Ben he needs to have his potassium checked and get him to eat bananna’s and baked potatoes. Joshua ended up in a hospital in michigan because he was so dehydrated and his potassium level was so low they thought he was a heroin addict. But some of the symptoms sound the same. Keep us updated.

I miss you guys.

Take care.

sherry

Thanks for keeping us posted. I know I read the maximum recommended dosage of Lyrica is 600mg a day.

Also my Dad has the same kind of spams I think but because his kidneys are not working right I think they rather him just take Tylenols. He has diabetes strokes blood pressure problems heart problems and he can’t walk. He can’t have salt sugar or potassium in his body. I wish there was a drug that would not affect his kidneys.

Sue

Shan,

Sue is right I mis-spoke, I take 200mg 3 times a day. They are 100mg capsules. According to the Lyrica website you can get all the way up to 300mg capsules. Sorry for the confusion.

Jerimy

Shannon,
I recently started taking Lyrica and it works great. I feel much better with it than the neurontin.

take care, give ben a hug.

sherry

Shan, I’m glad Ben is feeling alittle better. Pain control is such a hard thing to get right. Don’t give up, Keep trying there is a good combination for Ben out there somewhere. Take care of yourself also girl! Tell Ben —–I Told You So!!!;) He better start listening to his body, rest more and play alittle less! It will change for the better for him soon. Inquire about Requip for his twitching(restless legs), it works wonderfully for my hubby, I don’t get kicked when he is on it.:rolleyes: BIG HUGS to both of You!!!:)

Hi Shannon,

As I have said before, you are an amazing person! Regarding Ben, I am glad that the doctors told him to rest! Maybe now he will get it since it is comming from the doctor, not you. I hope that Ben will rest and start feeling better soon!

Dawn Kevies mom 😮

Hi,

I have had spasms simiular to your husbands’ but not constantly. My legs would spasm all at once and jump out straight. I could hardly move to try to release them. I use Baclofen 10 mg as needed 3 times a day. I eat alot of bananas, sometimes one or more a day and when I get up at night I eat a half of one.

I also get that restless leg problem and I take a Baclofen and walk around and eat a banana. Drink alot of water and during the day I get up ever so often from what I am doing and walk around. It is like I have to keep moving or my legs freeze up and spasm. Remember with GBS do not over do, expecially exercising or you will go backwards and cause more problems. I worked up to total of440 repetitions of 11 different exercises that I do in bed. Sometimes I have to back down a bit, watch how you feel and don’t push so hard. Some days our bodies are just over worked and need a slow down.

Good Luck and I hope your husband will get some long term relief soon.
Judy

Shan,

I was having a meeting with my co-liaison the other day and she said the very same thing about post GBS (having a severe case and post GBS afterwards). She is a nurse and her husband had GBS 7 years ago, she has done a lot of research as well. Its very interesting stuff and explains a lot about my situation. I will be speaking in front of a group of doctors and health care professionals at a seminar in September, and am trying to think of the [I]correct[/I] way, or correct medium to use, to ‘enlighten’ them about post GBS. The problem is that I know that there is already one phsyciatrist who will be a HUGE sceptic as he was asked to speak about phsycological problems in patients with, and who have had GBS. The co-ordinator told me that his response was something to the effect of …… [I]GBS is an accute illness from which patients recover quickly, there arent really any phsycological issues to speak of….[/I].:confused:

Shannon:
[QUOTE]Here’s a list of the medications he’s on:

Dilaudid – 2mg. 3/day (for pain management)
Lyrica – 50mg. 3/day (for nerves)
Valium – 5mg. 2/day (for muscle spasms)
Miropex .125mg. 2/day [/QUOTE] May I suggest the following:
Lyrica – increase to 125mg 2/day (very good for pain – especially muscle/joint pain)
Change from Valium to Klonopin – 0.5mg (4/day) morning; afternoon; and 2 before bed (approx 1 hr before bed)*
Vitamin K with calcium – helps relieve overall pain, and helps with spasms (an over the counter item, but make sure you get vitamin K with calcium).

*Klonopin (clonazepam) and valium (diazepam) are both benzodiazepines – not much difference. However, Considering the metabolic effects, the present study shows that clonazepam (klonopin) is more effective for both central and peripheral benzodiazepine nerve receptors.

Doctors are reluctant in changing medications, or perscribing increase dosages, but you’ve got to convince them you are aware of your illness, know about the medication(s) you are suggesting, and keeping them in mind of who is paing his/her bills. It has always worked for me.:)

Jethro

Shan,

I placed a quote from your post because of what you said that doctor feels about GBS and the (post polio) left overs we are left with, really are nothing. I wanted to wring his neck. Ask him how it would feel to have your whole life taken away and replaced with uncertainty and pain. Crippled for life and disabled from all the fun you used to enjoy. Wouldn’t anyone go bonkers and off the edge. If you need an article from a person who lost all the fun of life because of the residuals of GBS, I will be first in a very long line of avfidavide giving persons on the effect of GBS on the phsycological effects…..Should we cut off his legs and see how he feels? Or pound the crap out of his body till he can’t ever walk or navigate again and ask how he feels.

I can give you many pages and my physic report of what it did to me.

Judy, I am still burning…….

[QUOTE=ali]Shan,

to ‘enlighten’ them about post GBS. The problem is that I know that there is already one phsyciatrist who will be a HUGE sceptic as he was asked to speak about phsycological problems in patients with, and who have had GBS. The co-ordinator told me that his response was something to the effect of …… [I]GBS is an accute illness from which patients recover quickly, there arent really any phsycological issues to speak of….[/I].:confused:[/QUOTE]

Shannon, I experience similiar(maybe not as bad) when I rode my horse for 15 minutes(In the past before GBS I was a very competitive barrel racer). I hurt!! for 2 weeks and walk/foot drag got worse. I loaded up on Tylenol and even had to knock myself our with Niquil the pain was so bad. Burning/aching in legs and some in arms. Paresthesias also worsened. I had to stop doing(ie walking at night/housework). And definitly no riding horse!! I am now better but very unhappy to live with the limitations.
As we regenerate the nerves we also send out sprouts(smaller/weaker) that can not accomodate the increased activity and we HURT if we overdo. I’m trying to be patient and I hope your husband continues to improve as he rests. Dr. Shawn

Dr Shawn…..

I hate it when doctors and professionals say…”from which patients recover quickly with hardly any problems”. Did you have GBS??? And how soon did they get it under control. That last part is the problem. If you catch it quickly and treat it properly, there a good chance of not having extensive damage. I love horseback riding and never had a problem riding even in the mountains. My legs just wouldn’t go back together and they hurt like heck. Big deal.

The pain is nothing like GBS gives most of us on this forum. My family said that if they even lightly touched my body, I would scream. That was when I was under heavy pain killers and don’t remember anything, at least for the first month.

Hi Shannon,

Sorry that I got a little uptight with my last post and the above comment, but the doctors talk to a section of patients they choose. Why don’t they ask the people who don’t recover.

My estimation is that they don’t want the population to know that there is a disease out there that anyone can get, that can cripple a person just like polio. I was told by at least 3 people now, and I did see it on the internet in a statement by a medical professional that GBS is also called French Polio.

My girlfriend that I worked with had her husband die within weeks with GBS, and she told me they also called it French Polio. So I am not pulling up tales. In fact that was the first time I had heard it called that and that was 7 years ago. Also think about the name…it was named for the French Doctor that discovered it.

I have heard so many of these doctors saying well most people recover with very little problems and go on to live normal lives…….a few do. But let’s wait till later when the residuals start to occur. Do they reinterview these patients? 7 years, 10 years, 25 years?

Funny that they say 1 out of 100,000 people or 7 out of 100,00 people get GBS, because when I was in the hospital, there was another girl at the same Green Bay hospital that had it too. This is not a major city. In fact, just recently I talked on the phone to a lady that called me up from Green Bay to find out what her son could do to help his wife still in a hospital for so many months and might not make it.

Before that I heard more and more people having GBS around here. I guess all the extensive GBS patients are from Green Bay area. When people would ask what happened to me, I would tell them and they would tell me about a relative that had it and was also having many problems.

I could go on for hours, but they I would bore you more. I hope you understand that I am dealing as best as I can and finding ways to live a happier life. And I have, with the help of many friends. But when I hear a doctor spouting that crap, my blood boils.

Thanks Shannon for listening to me blow my top, we all have to do this some times. I hope your husband recovers fast, and everything “will” get better but slowly at first.

Take care, Judy

Hi Shan,

It is me again, Judy.

I was going back on the main page of the Adult GBS and I found that I had left a post earlier for you about the muscle spasms. I forgot to tell you that tonic water also helps alot. I use a bit of lemon (the fruit not jar lemon juice) juice to spif up the taste. I don’t drink alot of it because with out vodka it just isn’t the same. But it really works great when bananas and Baclofen don’t do their job.

Make sure he takes it easy and works up slowly to the better days ahead. One day a time is the only way. I use two canes and between Cymbalta 120mg, Vicodine ES, Clonzapam, Verapamil, Trazadone, Indomethacine, Furosimide and a few others, I am happy again. I have limitations and sometimes I don’t listen to my body and I do end up going backwards. So the rest of his life he will have to learn to adjust like we all have. It just takes time.

Good Luck Shan,
Judy

Judy,

Guillain Barré syndrome was discovered by the French physicians Jean-Alexandre Barré, Georges Guillain and Andre Strohl in the early 1900s following tests on soldiers returning from World War 1. Many cases of an identical condition had been described over the preceding 80 years (Landry’s Assending Parsalysis) but these neurologists identified one of the characterising features of the disease – the increased concentration of protein in the spinal fluid without evidence of inflammation. It was H. Draganesco and J. Claudion who, in 1927, first used the term Guillain-Barré syndrome. Since this paralyzing syndrome was discovered in France, it was often called “French Polio.” And that, Judy, is how GBS got the “French Polio” name. And, because it’s French, that’s why it’s pronounced Ghee-yan Bah-ray.

Warmest regards.

Jethro

I agree that I believe klonopin has a better affect on nerves. I take 1 mg 3 times a day. You would think this would make me tired but it relieves the muscle spasms and therfore gives me more energy. Hope this helps. xoxoxoxo Roxie

Shannon,
[QUOTE]Is Klonopin something he should only take when he has spasms, or is it a maintenance med that he should take everyday? I’m assuming the Vitamin K with Calcium is everyday.[/QUOTE] Both should be taken daily. Take care.

Jethro

Hi Shannon,

Yes, I blew up and settled down, thanks for caring.

I take Verapamil for head pain which I had for over 25 years. The neurosurgeon finally put plates in my neck and 10 screws to hold it in place. This stopped the pain from the damaged vertibre. I do use it for headaches and my brain tells me it keeps the blood flowing more easily, so no stroke. I had a fusion that needed to be connected to other vertibre to stop the pinching of the nerves in my neck. It worked but I still have arthritis and if I don’t use Verapamil, I do get a medium to small headache. I don’t have migrains but someone else could be getting them from GBS.

I take Clonazepam 1mg 3 times a day. This is the generic for Klonapin. I am taking it for panic attacks. I just dropped down from 4 times a day, so I am getting a little panicy here and there. Probably why I blew up so fast. Just have to work with it or go back up to 4 a day. I can see why it helps so well for spasms because it relaxes without making you out of this world.

Take Care,
Judy