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Old 04-05-2008, 06:54 PM   #1
DejaVu
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A Warm Hello to All!

I have had a recent exacerbation in PN. This had coincided with a two week trial of Depakote. I had an immune reaction to the Depakote (in a major way, which had started this seige of flared neuropathy. I have been off of Depakote for over 40 days now. The PN has been fluctuating. It had seemed worse ovr lsat weekend, as far as weakenss was concerne; yet, after starting 1 gram of acetyl-l-carnitine and 100 mg of CoQ10 (each daily), I had regained the muscle strength that had occurred in my legs over the past weekend. (Thank you for your suggestion, mrsD!)

I have had GI illness that doc has thought is a virus. I Am not sure if it has been a virus or a part of the PN. I have had to limit my dietary intake because of nausea, etc.

Although I had been having some muscle spasms (a few here and there), I am having them all over my body today.

If I use a muscle, thereby "flexing it a bit," it seems to cramp/spasm. I can have a few of these spasms/cramps all happening at once.

I had taken just shy of 300 mg of potassium this a.m., because the spasms were starting in the early a.m. I have also had my calcium and magnesium supplement for the ay (at noon). (I always eat one banana in the a.m, too.)

I am a bit baffled. I am wondering if I am still to short on magnesium.

I have calcium and magnesium with phyosphorus daily. Calcium is 1500mg. Magnesium is 750 mg. These are chelated. The phosphorus is 750 mg.

I have magnesium citrate on hand and am wondering if I might add some in to my supplementation?

I take morphine three times daily. I also have a Soma prescription. I hate to take them together, although the doc has okayed it/prescribed it.

I did just swallow only 1/2 of a Soma pill, because the spasms are so intense and diffuse. (Even abdominal wall muscle goes into spasm.) In just taking half, you can see my reluctance to use both meds at the same time.

I realize none of us are pharmacists and/or doctors.

Yet, any suggestions on helping the diffuse muscle spasms/cramping with minerals/other?

I appreciate any input and/or redirections!

Thanks so very much!:D
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Old 04-05-2008, 09:32 PM   #2
DejaVu
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Smile Magnesium Thread Very Helpful

Hello to All!

The partial dose of the Soma helped me enough to be able to eventually do a little more searching here (once spasms settled).

I did find the Magnesiaum Thread on the Vitamin/Supplement Forum and was able to gain a great deal of helpful information from this! I am grateful to all of the thread contributors! I expect to be able to "get through" tonight with the spasms (they have quieted some) and will eventually have restored enough magnesium to be in a better place with muscle spasms!

I hope everyone has a peaceful, pain-free night of high quality sleep!
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Old 04-06-2008, 08:22 AM   #3
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Arrow Be careful...

Well, I am going to say this firmly:

Do not supplement with more than the RDA of magnesium until you have testing at the doctor. (renal, parathyroid, calcium, and other electrolytes)
If you read my posts, you will find that I never suggest any magnesium over the RDA for readers here. If you decide to take more than 400mg/day you must discuss that with your doctor.

Deja--your posts are very long, but very short on useful information about yourself.

Muscle issues that continue in spite of adequate calcium/magnesium intake need evaluation. They can be do to many diseases, and parathyroid malfunctions, spinal disease, polymyositis etc.
You do not list your renal functions, so you are really shooting in the dark, with your self medication. I do not feel that you are proceeding safely.

YOu do not post your age here, or your other diagnoses which require you to be on Depakote in the first place, or morphine. The fact that you have Soma on hand implies to me that you have a reason for it. I get the feeling that you have many issues this board is not privy to.

You should not be taking extra potassium (where do you get that, for example?) without supervision. Choosing foods high in potassium is the safest way to go. Phosphorus supplements are not typically needed since it is so plentiful in the diet. If you have renal issues supplementing with it is dangerous, in fact.

Some of us here (myself included) use supplements to help heal PN, and/or control burning and improve functions. NONE of us here use megadoses of anything.


There is an alarming trend here for some people to try extreme things. I hope those who tend to do that will stop and think before continuing.

I have listed on the Medications forum, drug interactions checkers. I suggest readers and posters here visit the sticky there and look up things that they are currently taking to see if they have problems with their drugs.

This website has very good information on drug interactions with supplements/vitamins/herbs and minerals:
http://www.lib.umd.edu/guides/altern...cine.html#INTR

The Linus Pauling Institute is also very complete:
http://lpi.oregonstate.edu/
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Old 04-06-2008, 10:51 AM   #4
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Default DeJaVu

Hi - Sorry I'm no help on the meds but what hits me right away is the meds/nausea connection - if you are taking meds that are slowing down your muscles - they very well could be contributing to your gi issues right now... even meds thats are given for things like irritable bowl to stop cramps, etc. can make you feel ill - and I know thats not what you are taking - but anything that known to cause constipation or stop shaking etc can really affect the fuction of your intestines...
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Old 04-06-2008, 12:33 PM   #5
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Dear mrsD,

Thank you for your firm and important post of caution.
I do appreciate the firm warning...absolutely!


In mentioning the magnesium thread, and the goal of being sure I have restored any nutrient, I have not meant I'd be utilizing megadoses.
I have realized, while having been ill, my diet has been deficient, on top of likley having had nutrients depleted from medications, for probably quite awhile now. Yet, any "deficiencies" will be slowly restored, staying within the guidelines of RDA, uless directed otherwise by a physician.

(If I were to add in potassium once, I would not repeat that; yet I did not post that information clearly and I apologize if it was misleading/potentially harmful to anyone reading. I have found this helpful to me, on rare occasions...when I have been eating a high (relative) protein diet. Even so, I only supplement this maybe only 3-4 times a year. I never supplement this on a daily, weekly or even a monthly basis. My doc is fine with my adding in potassium ...once... as I have described, if I can see my diet has clearly been deficient for quite awhileand I am having muscular cramping of an unusual nature. I had failed to mention my doctor's approval.)

I did understand your information on Magnesium and did not mean to imply the thread had endorsed any mega-dosing. My apologies, again, if my post could be interpreted that way. I had simply meant the Magnesium thread had helped me to understand the importance of magnesium absorption and that...eventually, using a highly absorbable form, I would likely be back on track. (I was not trying to "fix" that overnight, in other words.)

I do deeply appreciate your voicing your concerns about safety.

Yes, mrsD, I have co-occurring conditions that I have not yet shared.
This is simply because I had been so suddenly/acutely and severely impaired by the neuropathy issues I have mentioned. I have been needing to keep my focus on this more immediate issue, in hopes of relearning information I had forgotten and/or is no longer the best information (the most accurate information) available on neuropathy itself.


This most recent exacerbation has been so acute and intense that I have not had the energy to yet get to the entire history/story. I have just been trying to stabilize the neuropathy symptoms enough to make them more tolerable, while I wait for EMG and Evoked Potentials and further instruction/opinion from my neurologist.

It is not my intention that I will not share co-occurring conditions. I just have not been up to writing it all out and have been so affected by pain and fatigue that I could not yet guarantee not missing (potentially) important parts of the story/the whole picture.

I find my cognitive abilities very "cloudy" (since this exacerbation onset) compared to my usual ability to write clearly and succinctly. Yet, I am truly trying to write as clearly as possible. (I think my somewhat "rambling posts" are evidence of this difficulty right now.) Yet, I am truly trying to relate information.

What I can try to share in a summary-type fashion :

I was suddenly struck with acute illness over 20 years ago. I was seen, evaluated and studied by Chronic Fatigue Syndrome and Fibromyalgia researchers. I was mostly seen by the CFS researcher (Harvard) and was evaluated then for fibromyalgia, as well in a study done together by the CFS and the fibromyalgia researchers. I was diagnosed as having both conditions by Harvard researchers.

I was very ill with CFS and had been thorugh endless testing while participating in the CFS research. I was a "subject" in some of the SPECT exam studies doen on CFS patients. (I'd had "abnormal" SPECT exam then.)

Once severely ill with what was labelled as "CFS," within 1-2 years,I had started to experience many other conditions I had not previously encountered: allergies, asthma, hypothryroidism, various immune system abnormalities, neurological symptoms and signs, severe migraine, trigeminal neuralgia, an intermittent/episodic mild Bell's Palsy (especially in hot weather), and more. I had experienced "attacks" of neuropathies, which had originally responded well to repeated treaments of oral prednisone, over a number of years. Eventually, the oral prednisone did not work any longer.

Many, many specialists have consulted on all of this.
I'd had a long period of ongoing neuropathy; this period had lasted for at least 5 years. These were considered sensory, motor and had started to show autonomic involvement ( neurogenic bladder, etc.) The "attacks" could not be stopped by prednisone anymore and the symptoms had stayed and had become chronic.

I was told then (during the prolonged and active period of neuropathy that I have (had): "immune-mediated inflammatory process of the central and the peripheral nervous system." (I am interested to see if this continues to be the opinion at this time.)

Approximately 4 years ago, a new Rheumatologist was also consulted and she'd had some new insights. She'd suspected antiphospholipid antibodies were involved and she was correct. (However, there is no proof of primary lupus. So...this is considered primary antiphospholipid antibodies.)

The fibromyalgia diagnosis is still considered applicable, in her opinion. I have lots of "osteoarthritis," tendonosis, burstitis.
I have 3 consecutive cervical discs ruptured. One has an osteophyte growing inward toward the spinal cord, as at last check was relatively close to the cord. THis had contributed to/caused right sided radiculopathy.
(We now suspect additional "spurs" and/or osteophytes and will do more investigation into these suspicions.)

She has also diagnosed an undifferentiated spondyloarthropy. She is waiting for further evidence. Currently, she is suspecting either psoriatic arthritis (without skin involvement) or ankylosing spondylitis.

(Two neurologists had offered differing opinons..one thought I should wear a neck brace to help to stabilize neck...one disagreed. All docs disagreed with the one neuro recomending a neck brace, arguing it would cause further neck weakness.)

I have demyelination on MRI brain scans...considered to be a part of severe and chronic migraine (potentially a result of chronic migraine resulting from antiphospholipid antibodies). This scarring has been not in areas considered to be evident of M.S., as of three years ago. (An MS expert did look over the MRI scans.)

While testing had showed nerve healing (3 years ago), I was left with a baseline of chronic pain. We have attempted almost of the antiepileptic drugs, etc. (I think Keppra is the only one we have not tried.)

I cannot use NSAIDS as I have had GI bleeds form even short courses. This includes OTC and prescription meds. I reamin on 3.5 mg. of prednisone that my docs want me to stay on right now..as it had taken a year to drop from 5.0 mg. to 3.5 mg and was very, very difficult. (This is from trying to taper off of a short burst of prednisone over 4 years ago. Further tapering creates such a problem with symptoms , docs want me to hold here.)

I can use (sparingly) a topical NSAID cream with an anesthetic mixed into it as well. YEt, I have to use this vry sparingly, to limit the amount that makes it into my blood stream, as the NSAID have an affinity for GI tract. (This has been made up by a compounding pharmacist for me for three years now. I think I have hear one NSAID topical formualtion has been approved by the FDA and may be available now, or soon, with a prescription. I think this will be mass-manufactuered, as opposed to being made up by compounding pharmacies.)

I have to use morphine daily, 3xdaily and dilaudid for breakthrough pain.

We were attempting antiepileptic meds, again, to try to ge some better control of pain, headaches, etc. (I had tried Trileptal for a third time, for 4 months and we had then tried Depakote for those two weeks or so, when I'd had the hypersensitivity/immune response to Depakote.)

I am female and in my mid-forties.
I have been medically disabled with illness for over 20 years now.
This had started with immune and neurological issues, which have only become increasingly severe over the years.

Now..I have tried to cover as much as possible today. I may have forgotten something..simply because my thinking is not super clear right now. (This cognitive cloudiness usually clears up with time, after an acute exacerbation.)

Thank you for the "drug interaction checker" links. I have a couple I have useed, yet these look better to me.

I hope this information is more helpful?

Thank you , again, for your input/opinions/advice.
I know you deeply care about people's welfare.
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Old 04-06-2008, 12:47 PM   #6
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Hi Kmeb!

Thanks for your input!

I have taken morphine (and dilaudid for breakthrough pain) for 4 years now. These do slow down the GI tract. I have not had nausea before from them.
Yet, you may be onto something, as we have "bumped up" the morphine a bit!
With the morphine increase (which could create nausea for me at this dose) and the GI "bug," it has probably just compounded the situation?


I do try to avoid constipation from meds.
Probably should pay even more attention to avoiding any constipation.
There's a good thread right here on this!

This sounds like a very reasonable explanation to me!

Thanks so much!

I hope each day gets better and better for you.
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Old 01-11-2010, 03:24 PM   #7
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Quote:
I cannot use NSAIDS as I have had GI bleeds form even short courses. This includes OTC and prescription meds. I reamin on 3.5 mg. of prednisone that my docs want me to stay on right now..as it had taken a year to drop from 5.0 mg. to 3.5 mg and was very, very difficult. (This is from trying to taper off of a short burst of prednisone over 4 years ago. Further tapering creates such a problem with symptoms , docs want me to hold here.)

I can use (sparingly) a topical NSAID cream with an anesthetic mixed into it as well. Yet, I have to use this very sparingly, to limit the amount that makes it into my blood stream, as the NSAID have an affinity for GI tract. (This has been made up by a compounding pharmacist for me for three years now. I think I have hear one NSAID topical formulation has been approved by the FDA and may be available now, or soon, with a prescription. I think this will be mass-manufactured, as opposed to being made up by compounding pharmacies.)
I used an NSAID called Deramaxx in my dogs for a while until I read about how much damage they can cause. We have switched to the NSAID alternative Vaxamine () which is an all-natural, botanical COX-2 & 5-LOX inhibitor for dogs that is very effective and a clinically proven alternative to anti-inflammatories. They make if for horses too, but I don't know it it is safe for humans.
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Old 01-11-2010, 05:37 PM   #8
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Potassium supplementation needs to be monitored with serum potassium levels....too much potassium can produce a lethal arrhythmia.

Dilaudid is mighty powerful pain medication. I wonder if you are having any interdose withdrawal?

I can't comment too much on your situation, other than to say, I went thru a stage of severe cramping. It stopped now. I have autoimmune issues.
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Old 01-14-2010, 09:11 PM   #9
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Hi DejaVu -

I have complete and severe muscle cramps as well. I have described this to my neurologist and to the Genetics doctor I met; and, both say that this is not typical with PN. I have been diagnosed with Charcot Marie Tooth, Type 1A. This is a genetic type of neuropathy.

I have been complaining about severe and sudden muscles cramps for about 8 years now. I was actually diagnosed with CMT after a particularly bad bout of muscle cramps. It's what convinced my family doctor to refer me to a neurologist. We had already gone over my diet, blood oxygenation and blood work repeatedly; and all seemed normal.

I don't know if these cramps are due to the neuropathy, or if it just so happens to be something else and we just happened to find the neuropathy first. I must admit that I have far more difficutly dealing with the cramps than the CMT symptoms. I dread them. I scare my family when I get them.

I get terribly nauseous, my body gets a huge shot of adrenaline, I get extremely hot, I shake (as if in shock) and have to apply excessive pressure to the cramp site. Sometimes my husband has to help me squeeze to help get rid of the cramp; and, that doesn't help right away. I actually sometimes walk around with a house coat belt in my pocket to use as a tourniquette when I'm feeling "crampy". I'm feeling sick now just thinking about it!!!!!

Anyway, EAT A PROPER DIET! Make sure you drink 4 - 6 glasses of fluid every day! Tonic water can be part of your fluids as the quinnine does help with cramps; but don't do that every day. Quinnine can be bad for you over a long period of time.

I take calcium (w mag & zinc), vitamin D, 1/2 iron supplement and B-12 daily (just enough to supplement my dietary intake).... I have been better since starting this vitamin regimen, thanks to the help from this site. I make sure to have fruits and vegetables, and yogurt with berries and almonds almost every day. Gotta love chicken too.

I also suffer from "wierdly" placed cramps and it has been confirmed that your sheath muscles can spasm! Your sheath muscles are like that thin skim of gunk when you take the skin off of chicken, so the spasm doesn't follow the same pattern as a usual big muscle cramp. I also cramp in the abdomen and everywhere else ... if it didn't hurt so much, it would be funny when the hands and fingers kink up in all directions.

If I have another major one I'm going to ask my doctor to refer me to someone (anyone!) else for more testing. If anyone reading this (Mrs. D?) has any suggestions as to the direction to go in, I would appreciate the input.

So good luck DejaVu. Believe me when I say: I TRULY SYMPATHIZE! I know that your medical issues are far more complicated than mine; but, I hope that something here might help you out.

Di
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Old 01-15-2010, 06:54 AM   #10
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If you are using an all in one cal/mag/zinc? You are not getting magnesium at all. Those combos typically use oxide form which is not absorbed.

Check your label, please. And if oxide is listed please read my magnesium thread. You can most likely get rid of those cramps by taking a good magnesium source:

http://neurotalk.psychcentral.com/thread1138.html

Oxide continues to be found in supplements, even when studies now exist to show it is useless. This is because of historical presence in books (old books) and cost effectiveness.

A good magnesium chelate is a large pill, it is typically not mixed with anything else because of that.

Don't assume because you take a vitamin or mineral, that it is absorbed properly or completely. Most calcium is only 20-25% absorbed as well!
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