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  • Help muscle spasms have taken over

    C5 quad post, woke up 3 weeks ago to terrible acid re flux ended up in the hospital . Diagnosed with esophageal ulcer. Muscle spasms are uncontrollable which are causing raised blood pressure to unacceptable levels they have NEVER been near this bad.
    I was originally on 5mg of Valium 2x a day and baclifin 5mg 2x a day. Now I am up to 15mg a day of Valium and 20mg of baclifin a day which basically has done nothing to improve spasms.


    Anybody been thru uncontrollable spasms for 3 weeks or more. Any ideas welcome.
    "Yesterday's History,Tomorrow's a Mystery"

  • #2
    It is probably from your ulcer. Spasms are one way the body lets you know something is wrong. Once your ulcer is under control, your spasms may also be under control. If it is not the ulcer, I would start looking at other potentially problematic areas, such as skin issues, bladder infection, etc.
    ckf
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      been taking carafate for 3 weeks along with protonics, everythin else has been checked out. would it help increasing baclofen and valium?
      "Yesterday's History,Tomorrow's a Mystery"

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      • #4
        It might help to increase the medications, but only do so after speaking with your provider. Have you changed anything else?
        ckf
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Nothing changed at all,
          in the 3 weeks in hospital they checked for sores,uti,cat scans,for blood clots,heart echo, ultrasound of everything exploratory surgery of abdomen and the only thing that they found is ulcer with endoscope I have been out and not much spasm relief. I never had spasms like this in 39 years! Primary Dr upped Valium & baclofen not much help. I don't know what to do maybe cbd oil cause I can't live like this.
          "Yesterday's History,Tomorrow's a Mystery"

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          • #6
            Originally posted by Hawk View Post
            I don't know what to do maybe cbd oil cause I can't live like this.
            Hawk, IMO it wouldn't hurt. I had such severe spasticity and dyskinesia that it was waking me up at night - legs jerking rhythmically every 20 seconds, and my whole body seizing up for 5-10 seconds when I moved even a fraction of an inch. A friend recommended CBD oil and it helped me from the first dose - I still get the seizing up when I change position, but it's not as pronounced and my leg jerking is down by 40-50%. It also takes the edge off anxiety, though there is no mind-altering THC in CBD oil.

            Dosage is not easy to figure out because nobody knows much about the oil at this point. The company where I bought mine (Hempworx.com) recommends working up to two droppersful a day (one each morning and evening). A full dropper contains about 20 drops. But I get relief with only 7 drops morning and evening (which is good, because the oil is expensive - a 750mg bottle costs $97, including shipping). Every CBD oil manufacturer will tell you that you need to find your own "sweet spot" - so start low, to save money. It's not dangerous to take a full dropper from the get-go, but if you don't need that much you'll waste a lot of coin.

            CWHemp.com sells capsules of the oil that you take twice a day. Capsules are as effective as oil from a dropper, but they dissolve in the stomach instead of under the tongue and so they take longer to get results (drops work in about 20 minutes, capsules an hour).

            There are many reputable CBD oil companies nowadays - look for the ones that sell organic products extracted by the C02 method, because hemp holds onto toxins and molds in the soil like nobody's business. C02 extraction is gentle and safe, whereas alcohol extraction can leave traces of herbicides. Hempworx.com sells organic oil - CWHemp.com is not certifued organic at this point, but claims to be working toward that status. Type "best CBD oil companies" into Google and follow the links. CBD oil can be shipped legally to all 50 states because it does not contain a significant amount of THC.

            One word of caution: CBD oil affects a liver enzyme that is necessary to metabolize meds, so you'll need to consult your doctor before starting the oil.

            CBD oil contains between .1 and .3% THC after extraction, which for all practical purposes is nothing. But for people who are subject to random drug screens, CBD oil is available without even a whiff of THC - that kind of oil is called an Isolate on websites.

            That's the extent of my knowledge on the subject, because I only started taking the oil three weeks ago.
            Last edited by Bonnette; 11-10-2018, 07:28 PM. Reason: correction
            MS with cervical and thoracic cord lesions

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            • #7
              Elevatesd spasms usually comes down to irritation with the usual suspects being seating/position, infection, kidney stones, bowel, skin, ingrown nails, and heterotopic ossification.

              They could also be caused by changes in med doseage, especially with baclofen. Personally oral baclofen made my spasms worse. Doctors denied the possibility. But unless you take it like clockwork, it can cause withdrawal (A.D. and spasms). Even if you take it like clockwork it tends to constipate, which leads to spasms for some people.

              The answer for me was the baclofen pump. It's the same medicine. But when administered intrathecally, it is much more effective with much less side effects, including withdrawal spasms.
              Last edited by August West; 11-11-2018, 09:03 AM.

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              • #8
                Always urinary tract related for me....

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                • #9
                  Thanks for all the information guys I'm looking into this.
                  "Yesterday's History,Tomorrow's a Mystery"

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                  • #10
                    The pump is a good option if you can not figure out what is causing your spasms. It is still the preference to try to find the trigger and remove it.
                    ckf
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    • #11
                      Good in theory to eliminate the stimulli but it may be impractical. For example, if you get spasms only with a UTI, then obviously you treat the UTI and expect the spasms to go away. But what if you have spasms because of H.O.? You can't really treat that. Some people get spasms from a full bowel. Such stimulli can have a drastic impact on quality of life. Do not underestimate the quality of life improvement with a baclofen pump. You still have to try to manage the root cause if possible. But why not do so with a little peace of mind?

                      I keep my baclofen pump dosage high enough to give me peace of mind and still low enough that I still get some spasms periodically. That way I can have quality of life and still receive red flag signals from my body.

                      Having said this, not all spasms are signalling failure. Sometimes the root cause of spasms is an overactive spinal cord (I know this because of my body's reaction to caffine, sugur, and other stimulants too risky to enjoy anymore). In which case, spasms can be your sci's best friend. They help maintain tone and muscle and bone mass. You just don"t want them to be so bad that they drive you nuts. Hence, the pump is set just right to keep them alive and well and still under control.
                      Last edited by August West; 11-12-2018, 04:00 PM.

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                      • #12
                        Everything was from the ulcer! I can't believe it but I am back to my old self!
                        "Yesterday's History,Tomorrow's a Mystery"

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                        • #13
                          Wow, that's such good news, Hawk!
                          MS with cervical and thoracic cord lesions

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