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Can't take oral Baclofen - Help!

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    Can't take oral Baclofen - Help!

    My spasms have been extremely bad so my neuro put me on oral Baclofen. Drowsiness is never an issue for me. Other than my normal MS fatigue medications that say they will cause drowsiness never do. In fact, some actually give me energy . However, I did have a rare side effect of mood changes. I'm usually a very cherry, upbeat person. Since taking the Baclofen - honestly, if the someone came and asked me to kill a person who had molested their child, I would have done it with a smile on my face. When I realized I was in that state of mind I called the neuro immediately, she explained the chemical reaction I was having to it and told be to taper off over the next few days.

    Now I'm worried. It's the only thing that's been strong enough to even touch my spasms. Has anyone else experienced this horrible side effect and know of an alternative med?

    #2
    Originally posted by odd duck View Post
    .

    Now I'm worried. It's the only thing that's been strong enough to even touch my spasms. Has anyone else experienced this horrible side effect and know of an alternative med?
    I found Baclofen left me depressed.
    I switched to MMJ. For me it works better and does not leave me tired or depressed. I think it is legal in your state.
    If you try it start small. For me it takes very little to get the desired effect.
    MMJ is not a cure-all and it does not work for everybody but it is the best treatment I have found. I have been using it daily for more than a decade. No problems yet.

    Cheap quick and easy, but I hate the smoke and the smell.
    It is a long way from perfect but it does provide me relief without depression.

    Hope you find something that works for you.

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      #3
      You can try Zanaflex. I take it in addition to my Baclofen and it works well. It makes me a bit sleepy, so perhaps it would give you some energy. I hope you find something that works. Let us know what it is, OK?

      Take care
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

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        #4
        Been on Zanaflex and it's like taking an M&M... Sometimes I think I'm beyond help . At least my horrid mood is lifting. Like I said, I'll take the physical pain any day but this murderous rage is so not a part of who I am.

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          #5
          There is a medication called Dantrolene you could ask to try: http://www.drugs.com/pro/dantrolene.html

          Your liver needs to be watched while you are on it, and it could possibly have some psychiatric side effects. The dosage is started out small, then gradually increased, so might take awhile to notice any benefits/ side effects.

          There's also Valium or Botox injections. http://www.nationalmssociety.org/abo...ity/index.aspx

          The only other thing I can think of is a baclofen pump, because with this the medication will have an entirely different mechanism of delivery (a liquid form is delivered directly into the spinal cord, and a only fraction of the medication is needed). So, it's very possible this wouldn't give you the same side effects as oral baclofen. But, IDK or if you'd even be a candidate for one with your degree of spasticity. A trial dose of the medication is given before you commit to it, so you'd know if it benefitted you or not. Just something that might also be worth inquiring about. http://www.medtronic.com/patients/se...rapy/index.htm

          Spasticity is not any fun to deal with. I really do hope you find something that will work for you! Please keep us posted.

          Best wishes ,
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment


            #6
            WoW, excellent thread old duck...just had this conversation this morning with my doc. The scarey thing is what he said, "Let's try balcofen, I can't take it, but it might work."

            Then he said he had a few patients end up in ER with it, but worth a try. I am not crazy about it...but, I will 'try' something and go back to mmj. I so fear being in an institution and not be able to use mmj and be on NO meds.

            @22Cyclist... Zanaflex might be a better option, i think I'll call and ask him. my preference is to take only one, if possible.

            Thank You all for your comments...you guys are GOLDEN GEMS! fed

            Comment


              #7
              Ooops! I went to pick up my Rx and my door precribed Flexoril, instead. I'll try that one, thanks to all of you!fed

              Comment


                #8
                Spasticity - Baclofen & Zanaflex

                Hi - I used to take Baclofen for spasticity and noticed that my legs felt like they weighed a ton each and were more stiff than when I began.

                I'm currently in an episode and was prescribed Zanaflex. This works, however I can't take it during the day as it lowers my blood pressure. This was caught by a PT on my 1st visit in the AM when they did my vitals. My neuro advised to try Baclofen during the day and Zanaflex at night. A new PT noticed that my legs were severely stiff in the AM and asked me what I look. It was Baclofen. Happy to confirm that the stiffness was not my imagination!!

                Listen to your body. It's telling you a lot and you know it best. I agreed to try to the Baclofen for 2 weeks and only made it one week. I see the neuro on Weds. I don't know what's next but I'm trying to stay positive.

                Be well!

                Comment


                  #9
                  i had a mood reaction to baclofen so i don't take it. haven't found another substitute yet.

                  Comment


                    #10
                    My restless legs were getting worse so my doctor put me on baclofen. It worked for a while, but now my muscle spasms are worse then before and I'm noticing some side effects. Any ideas? Thanks

                    Comment


                      #11
                      Hi nkh18. Do you have restless leg syndrome or the usual leg spasms? I take baclofen at night before I go to bed to get relief from the spasms, but not anytime during the day.. if I were you, I'd stop taking them if the side effects are that bad. Maybe you might trying a lower dose?
                      I'm sorry you are having trouble.

                      If you have RLS, here's an article from the NIH about medications, lifestyle changes, and updates on RLS


                      There is no cure for RLS but some symptoms can be treated. Moving your affected limb(s) may provide temporary relief. Sometimes RLS symptoms can be controlled by treating an associated medical condition, such as peripheral neuropathy, diabetes, or iron deficiency anemia.

                      Medications for RLS include:
                      • Iron supplements
                      • Anti-seizure drugs—Anti-seizure drugs are the first-line prescription drugs for those with RLS. The U.S. Food and Drug Administration (FDA) approved gabapentin enacarbil for the treatment of moderate to severe RLS. Other anti-seizure drugs such as pregabalin can decrease such sensory disturbances and nerve pain.
                      • Dopaminergic agents—These drugs, which increase dopamine in the brain, can reduce symptoms of RLS when taken at night. The medications ropinirole, pramipexole, and rotigotine are FDA-approved to treat moderate to severe RLS. Levodopa plus carbidopa may be effective when used intermittently but not daily because long-term use of dopaminergic drugs can eventually worsen symptoms and cause other complications.
                      • Opioids—Drugs such as methadone, codeine, hydrocodone, or oxycodone are sometimes prescribed to treat individuals with more severe symptoms of RLS who do not respond well to other medications.
                      • Benzodiazepines—Medications such as clonazepam and lorazepam are generally prescribed to treat anxiety, muscle spasms, and insomnia, and can help individuals get more restful sleep.

                      The following lifestyle changes and activities may provide some relief if you have mild to moderate RLS:
                      • Avoid or decrease the use of alcohol, nicotine, and caffeine
                      • Change or maintain a regular sleep pattern
                      • Try moderate, regular exercise
                      • Massage the legs or take a warm bath
                      • Apply a heating pad or ice pack
                      • Use foot wraps specially designed for people with RLS, or vibration pads to the back of the legs
                      • Do aerobic and leg-stretching exercises of moderate intensity
                      What are the latest updates on restless legs syndrome?

                      The National Institute of Neurological Disorders and Stroke (NINDS) is the primary federal funding agency for research on restless legs syndrome. NINDS is a component of the National Institutes of Health (NIH), a leading supporter of biomedical research in the world.
                      • Researchers are investigating changes in the brain’s signaling pathways that are likely to contribute to RLS. In particular, researchers suspect that impaired transmission of dopamine in the brain’s basal ganglia may play a role. Researchers also hope to discover genetic relationships in RLS and to better understand what causes the disease.
                      • NINDS-funded researchers are studying the role of epigenetics in RLS development. Epigenetic changes can switch genes on or off, which can broadly impact both health and disease. Evidence suggests that iron deficiency during pregnancy, in infancy, and childhood increases the risk of developing RLS later in life. Scientists hope that understanding epigenetic changes associated with iron deficiency can offer new information on how to prevent RLS.
                      • NINDS also supports research on why the use of dopamine agents to treat RLS, Parkinson’s disease, and other movement disorders can lead to impulse control disorders, with aims to develop new or improved treatments that avoid this adverse side effect.
                      • NINDS-funded researchers are using advanced magnetic resonance imaging (MRI) to measure brain chemical changes in the brain in individuals with RLS to develop new research models and ways to correct the overactive arousal process.
                      • Scientists currently do not fully understand the mechanisms through which iron gets into the brain and how those mechanisms are regulated. NINDS-funded researchers are studying the role of endothelial cells—part of the protective lining called the blood-brain barrier that separates circulating blood from the fluid surrounding brain tissue—in the regulation of cerebral iron metabolism. Results may offer new insights into treating the cognitive and movement symptoms associated with RLS.
                      • Researchers are also testing non-drug therapies such as a compact, wearable non-invasive nerve stimulation device designed to treat RLS during sleep.
                      https://www.ninds.nih.gov/health-inf...-legs-syndrome
                      1st sx '89 Dx '99 w/RRMS - SP since 2010
                      Administrator Message Boards/Moderator

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