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This topic has 7 replies, 5 voices, and was last updated 6 days, 4 hours ago by Alyssa Silva.

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    • #24039
      Alyssa Silva
      Keymaster

      My intestinal spasms continue to persist, and with each passing day, I lose a little more hope that things will get resolved.

      Yesterday, my SMA team (GI, critical care, and anesthesia) prescribed gabapentin to see if that would inhibit the neurons firing off, thus stopping the spasms.

      After hanging up with them I did some research on this drug, and now I’m unsure about taking it. The side effects seem pretty horrifying, and my body is highly sensitive to medications.

      Instead, I’m thinking about trying CBD first and having gabapentin as a last resort. Have you been prescribed this drug before? Was your experience with it good or bad?

    • #24043
      Tracy Odell
      Participant

      I was on that medication for a while. The side-effect that was most noticeable for me was double vision. I was switched to pregabalin and am not having side-effects. These meds did help, but I still get a lot of pain at times.

    • #24049
      DeAnn R
      Keymaster

      Sorry you’re going through this Alyssa. I don’t have much experience with different medications. I guess you have to weigh the risks of side effects with how miserable you are without them. I have heard good things regarding CBD, but again I don’t know firsthand. Hugs!

    • #24056
      Mike B
      Participant

      I tried Gabapentin in the late 1990’s when some medical professionals opined it might be beneficial for SMA patients. There was a clinical trial. I experienced a strong drunken/dizziness side effect when I first started taking it but there were some overall positive effects also. I believe each person’s body chemistry is a little different so you never know what might help. I’d suggest maybe trying a CBD or THC syrup, or an indica gummy and seem if that helps.

    • #24070
      Kelly Miller
      Participant

      I was prescribed gabapentin a couple of years ago by a palliative medical doctor. I was trying to find that perfect combo of meds to deal with my pain, willing to try anything at that point. I started feeling the side effects pretty much right away. It began with the dizziness others here have mentioned which quickly turned into nausea. I also had an intense sleepiness during the daytime. But then, I had the worst thing that’s ever happened to me before regarding medicine. I woke up in the middle of the night with muscle spasms all over my body. It lasted several hours and was both extremely painful and scary.

      Now that I’ve told all of what I’ve experienced with gabapentin, I feel a responsibility to add a few disclaimers. I’m only one person, and everyone reacts differently to medications. One of my best friends (albeit without SMA) swears by it and doesn’t have any negative side effects. Also, it’s important to note that your own body can react differently to meds too. I was ill at the beginning of this year. When I was intubated due to becoming unresponsive after going into full arrest and my husband was asleep from exhaustion, they gave me gabapentin with no problems. I’m still on it, but it’s a low dose and I take it at night. So it just depends.

      I will say as a warning, it won’t work like an advil. It has to build up in your system; therefore, reciprocally, you can’t just stop taking it all of a sudden either. That would definitely cause you huge issues! I know SMA people who love CBD, but be sure to talk to someone who really knows the product, not just off the Internet or at a store where they sell it in the checkout line as a side item. THC has helped people also, but the same should go for  the purchasing of it as well, get it from someone who knows where it comes from.

      One more thing, I promise. You will be paying totally out of pocket for CBD and THC, no insurance. CBD for sure can get very pricey the better the quality. It’s like essential oils where you pay more for a purer product. Whatever you decide, good luck and keep us posted as to how it goes. If you want to talk privately sometime about any of it, email me at [email protected].

    • #24078
      Alyssa Silva
      Keymaster

      Thanks for sharing your experiences Kelly! I do take in everyone’s input knowing that our bodies respond differently to medications. Personally I’m super sensitive to drugs so when I read other people’s experiences with it, I hesitated. I will mull it over some more.

      And yes CBD is expensive. I bought a 1.5 fl oz bottle and it cost me $24! I will tread carefully taking it. Thanks again.

    • #24079
      Alyssa Silva
      Keymaster

      Tracy and Mike, I’m sorry to hear gabapentin caused side effects. That’s what I’m afraid of. I am typically the person that will experience side effects on the drugs least likely to cause them. So I’m a little apprehensive about it. Think I’ll start with CBD first.

    • #24080
      Alyssa Silva
      Keymaster

      Hugs, DeAnn! I’ve heard good things too. Fingers crossed.

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