Need help fast–muscle spasms

    • Anonymous
      June 28, 2007 at 5:40 pm

      Hey guys,

      I need help fast. For the past week, Ben has been having very severe muscle spasms that start with sensitivity in the feet and go up the legs to his rear in a “wavy” and cramping fashion. They keep him awake all day and night, and he only gets relief from his meds for three hours at a time. Then he has to go for several hours before he can take his meds again, so he’s up again having to feel the discomfort and pain. For the past week, he’s been either doped up and passed out or pacing around the house in pain and slapping his legs. He spent three days in the hospital, and all tests (CBC, MRIs of the spinal cord and upper and lower lumbar) have come back normal. I haven’t slept in a week because I’m constantly up with Ben. This is no way for either of us to live, and I just want to disappear to a time when Ben was healthy. It’s so sad, frustrating and frightening living without a diagnosis and a treatment that helps. Please let me know if this sounds familiar to anyone else. I should also mention that Ben had GBS over two years ago and was starting to do strenuous exercising before this happened. 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 (used to treat Parkinson’s and Restless Leg Syndrome; for spasms; caused Ben to hallucinate in the hospital)

      He has an EMG on his legs scheduled for July 9th, but I’m hoping his neuro will be able to get him in before then. We’re also scheduled to see a neuromuscular doctor, but that appt’s not until the 10th.

      Some other odd symptoms: sneezing, going to the bathroom (number 2) after every meal, mucous buildup in the throat.

      Please help if you can because I don’t know what to do anymore, and it’s getting very difficult being his only caregiver. I’ve had to take time off work to be with him, and I can’t afford to lose my job.



    • Anonymous
      June 28, 2007 at 6:33 pm

      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?


    • Anonymous
      June 28, 2007 at 6:38 pm

      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.


    • Anonymous
      June 28, 2007 at 6:45 pm

      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?



      PS: Also check here [url][/url]

    • Anonymous
      June 28, 2007 at 7:15 pm

      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!

    • June 29, 2007 at 5:24 pm

      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 😮

    • June 29, 2007 at 5:30 pm

      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!


    • Anonymous
      June 29, 2007 at 11:40 pm

      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.


    • Anonymous
      June 30, 2007 at 1:41 pm

      Hey Ladies,

      Thanks for all your wonderful and supportive responses! Thank God, the Mirapex kicked in, and Ben is finally getting some relief with his symptoms. Mirapex is used for Parkinson’s and Restless Leg Syndrome, neither of which Ben has, but it’s good he can take something until we get a diagnoses.

      Sherry – We miss you too! They did a CBC when Ben was in the hospital last weekend, and his levels were all normal. However, I’m giving him bananas and cashews everyday just in case the labs were wrong because he’s had issues in the past with his potassium and magnesium levels. I’d like to have him take a multivitamin, but he’s on so many weird meds right now, I don’t want to have to worry about drug interaction. By the way, I found a website on drug interaction that’s really helpful. Of course, I don’t have the link handy because I’m on Ben’s computer, but if you type drug interaction in google, it should come up.

      Dawn – Ben wants to go to the Taste this weekend, but I don’t know if it’s a good idea right now. Granted, we’re only two miles west of Grant Park and could get home quickly if he started hurting again, but I think it’d be better if we stayed in. On the other hand, I don’t want him to have to miss out on life during the times that he’s feeling well. I have no idea what we should do! Maybe go and take his pills with us.

      Cher – Thanks for the hugs! We tried calling you the other night, but your phone was busy. We’ll try again this weekend.

      Sue – Thanks for the links. I had read the exact same articles myself, and they’re extremely helpful and informative! As for the Lyrica, we talked to Jerimy, and he said he takes 1200 mg./day, so I’m playing Nurse Shannon and am giving Ben extra dosages, about 150 mg. three times/day. We have a doctor’s appt. on Tuesday, so I’ll tell the doc we need the 200 mg. tablets.

      Jann – He says his spasms aren’t like charley horses. The way he describes it is it starts with tingling and sensitivity in the toes and bottom of the feet, then the top of the feet start cramping and the cramping spreads up his leg to his rear. Not quite the symptoms of Restless Leg Syndrome. I’m my own amateur opinion, I think he has nerve damage in his legs from the GBS, and strenuous exercising caused him to pull a muscle. Since his muscles were over compensating for the damaged nerves, the legs are going ballistic because now the nerve and muscle are damaged. We have an appt. to visit a neuromuscular specialist, but it’s not for another week. We also have an EMG set up, but also not for a couple weeks. I hate the waiting game, but I’m just so glad he’s found some relief.

      Whew, I didn’t mean to go on like that! I need to go find Ben and make sure he’s still doing okay.

      Have a great weekend!


    • Anonymous
      June 30, 2007 at 1:53 pm

      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.


    • Anonymous
      June 30, 2007 at 5:58 pm


      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.


    • Anonymous
      June 30, 2007 at 7:39 pm

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

      take care, give ben a hug.


    • Anonymous
      July 1, 2007 at 3:17 pm

      Sue, Ben’s godfather has almost the exact same conditions and problems that your father has. He takes Quinine after dialysis and says he just has to pray everyday that he can make it through the pain. I feel really bad for people who have to suffer like that everyday.

      Jer, thanks a lot for making me OD Ben on Lyrica! :p He’s getting abount 450 mgs. a day, so I’ll talk to his doctor on Tuesday and find out if that’s okay and get another script.

      Ben has been spasm-free for two days now, thanks to Mirapex! He would’ve been okay on Friday, but I messed up and didn’t give him the Mirapex until the spasms had already started. They only lasted about half an hour though, so at least he didn’t have to suffer too long.


    • Anonymous
      July 10, 2007 at 9:12 pm

      Just wanted to give you all an update:

      Ben and I visited Dr’s. Meriggioli and Rowin from UIC this morning for an EMG/NCV. They confirmed that Ben’s muscle spasms are from residuals from GBS and are worsened by his over-activity. They told him he’s trying to do too much and that he should only try 40 minutes of exercising a day; however, they advised him to rest for the next two weeks. The spasms had finally ceased on Saturday, and Ben stopped taking his meds, but the restless legs started back up this evening. He’s sleeping right now, and I’m watching his entire body twitching while he sleeps. He’ll probably wake up hurting in an hour and beg for some meds, but I won’t be able to give him anything for three hours. I just hope he can sleep longer than what I’m expecting.

      In any case, they said that because his case of GBS was so severe, the nerves are still growing back, and they’re growing back wrong. They couldn’t say whether he will have problems the rest of his life, but they did seem optimistic that things would eventually start to normalize for him again. I also asked if they saw many GBS cases as bad as Ben’s, and they said yes, but Ben’s spasms are probably worse because he’s trying to do too much.

      Damn, he just woke up in pain. Thanks for taking the time to read this.


    • Anonymous
      July 10, 2007 at 11:52 pm

      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!!!:)

    • July 11, 2007 at 9:11 am

      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 😮

    • Anonymous
      July 11, 2007 at 3:26 pm


      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.

    • Anonymous
      July 11, 2007 at 9:37 pm

      Well, I had a follow-up call with the doctor today. He said Ben has post GBS syndrome, and it’s his nerves that are spasming, and the muscles are fine. Ben will be going back on Neurontin tomorrow and going off the Lyrica. He’s been taking Mirapex for the spasms, and it’s been working, so we’re going to keep him on that for the time being. Fortunately, he’s feeling much better tonight.

      As a side note, the doctor also mentioned that since Ben had a severe case of GBS and made a quick recovery, he will be more prone to post GBS residuals in the future, and he likened it to post Polio syndrome. Also, Ben has had a left drop foot since his GBS, and the muscles in the left leg are weaker than the right.

      Thank you ladies again for your help and kind words!


    • Anonymous
      July 11, 2007 at 11:18 pm


      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:

    • Anonymous
      July 12, 2007 at 6:13 am

      [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.:)


    • Anonymous
      July 12, 2007 at 8:36 pm


      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…….


      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]

    • Anonymous
      July 13, 2007 at 12:54 am

      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

    • Anonymous
      July 14, 2007 at 12:29 am

      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

    • Anonymous
      July 14, 2007 at 12:56 am

      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,

    • Anonymous
      July 14, 2007 at 7:53 am


      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.


    • Anonymous
      July 14, 2007 at 10:55 am

      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

    • Anonymous
      July 14, 2007 at 12:04 pm

      Hey everyone, great news! Ben hasn’t had a nerve spasm in almost three days! What’s weird now though is that his migraines are becoming more prevalent, and he had to take a second Verapamil yesterday. He usually does okay with one a day. Judy, I noticed you’re on Verapamil too. Do you take it for migraines, and does anyone know if the migraines are a residual of the GBS?

      Jethro, I wrote down your list of meds, and I’m glad you responded to my thread! I was waiting for you! I’ll do a search on Klonopin and ask for a script from Ben’s doctor. 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.

      Ali, I’m glad you stopped by too! I know you’ve also had problems with post GBS, and you’ve seen so many doctors and have done so much reading. Good for you for everything you’re doing to educate the medical field! I don’t understand how a doctor can sit there and be skeptical when he has a person standing in front of him telling him about her experiences with post GBS. Ben and I have been so fortunate with his doctors and were so lucky that his neurologist referred him to Dr. Meriggioli, a neuromuscular specialist and professor at UIC. Dr. Meriggioli spent a lot of time explaining things to us and then called me the following day to go over the test results. He’s so nice and patient on top of being a specialist in GBS. I can’t say enough about him.

      Judy, Green Bay sure has it’s number of GBS cases, doesn’t it? Chicago’s like that too, but since I’m in a large city, you’d expect us to have more. I work in an office of about 50 people, and four of my co-workers have close friends with GBS. By the way, you seemed to get really stressed out with Ali’s post about that psychiatrist. I hope you’re more relaxed now because I’m noticing with Ben that when he’s stressed about something, the headaches get worse, and who knows what else it does to his body? You and Ben and probably every other person on this forum need to take it easy, but, at least when it comes to Ben, I may as well be talking to the wall.

      Have a great Saturday!


    • Anonymous
      July 14, 2007 at 8:31 pm

      [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.


    • Anonymous
      July 15, 2007 at 2:37 am

      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,