Baclofen ... Personal Experiences?

[bazooka111]

I hope all is well in your corner of the world. If you watch the news, you know what our part of the world is looking like -- sigh.

Mom is dealing with Dystonia pretty bad in her right foot, 4 of 5 toes -- whew its really bad. We did a virtual appointment with our Neurologist, and he prescribed 20 mg of Baclofen at night. This is the third day on it, and she is SO tired --- more than usual. She looked at me today, and said, "I don't feel like myself" ... this stuff worries me. My husband feels like we need to hang in there for a few more days and let her body adjust to the new med .... I don't like seeing her this way

I have searched on this forum under "baclofen", and have read some comments, but not much really insight.

Have any of you had experience with this medicine?

Appreciate the input.

Kim

[Hidden]

Mom never took this med but l know that finding the right meds & dosage can take time. Plus checking in with her doctor & reporting how she is feeling might help every one feel better. Sending hugs... Granni B

[bazooka111 in reply to Hidden]

Thank you Granni B --- I did reach out to her Neurologist, and he set up a virtual appointment via Zoom -- it was quite helpful, so Im glad I did that. He adjusted the med (Baclofen) ... and now we are several days on the adjustment --- and I think she is doing better. I hope you are doing well, and enjoying some sunny days in your part of the world. ((hugs back) Kim

[Hidden in reply to bazooka111]

Glad you have use of modern technology... such a blessing. Take care & be safe & eat ice cream! It is sunny here & clear. Granni B

[Sam_S]

Hey Kim,

My Mom has been on Baclofen for over a year now. Before taking Baclofen, she had major muscle spasms and contractions and was in so much pain to the point where we had to give her morphine. It took a while for Baclofen to work, and the dosage was increased gradually up to 50mg per day; that’s 10mg five times a day. It took a few weeks rather than a a few days for Baclofen to fully kick in and for my Mom to fully adjust. But thankfully, we were able to stop giving her the morphine. Since Baclofen is a muscle relaxant, it is only normal for my Mom to be sleeping most of the time, but at least she is not in pain. Of all the meds my Mom is taking, I would say Baclofen is the most important one; it’s a blessing.

I hope that helps.

Sam

[bazooka111 in reply to Sam_S]

Hey Sam -- Thank your for sharing, I actually read this right before our virtual appointment with Neuro, so it helped me to ask more questions about Baclofen -- and understand the drug more. I think we've found that it is going to help -- I hate seeing her in that level of pain -- just horrible. Thanks again! Kim

[Heady]

Sorry Kim, no knowledge of this, but most drugs need to get into the system before they start to work. I would persevere for a few more days, although you should ring the doctor if you are worried.

Sending big hug and much love

Lots of love

Anne

[bazooka111 in reply to Heady]

Hi Anne! You are so right -- believe it or not, I am still on a learning curve with medications. I am so used to taking the basics of pain relievers, and thats not very often --- so all of this is a bit overwhelming, and I have a lot to learn. We are pushing through with the Baclofen, and see how things go --- so far Mom has not had any spasms, and she is sleeping more ... sometimes, I look at her and cannot believe we are here. One day at a time. ((hugs to you)) Kim

[Northstar1]

Hi Kim any meds my husband has tried really make I ill and fatigued. It's so difficult. A friend recommended CBD tablets from Holland and Barrett. I am going to order some anything is worth a try. They have positive reviews xx

[bazooka111 in reply to Northstar1]

I have been advised several times on the idea of trying Cannabis.. I will have to do a bit of research on this. Please let me know your experience and how things go for you and your husband. Appreciate the insight -- I will read up on this. Kim

[kenh1]

My wife CBD was prescribed Baclofen throughout her illness with no problems.

[bazooka111 in reply to kenh1]

That is good to know --- we are on a daily regimen, I can only hope that it will be the answer we need. Pushing through.

[kenh1 in reply to kenh1]

Just a correction. My wife had CBD Cortico Basal Degeneration. One of your replies refers to you trying CBD which I presume means Cannabis oil. The social media cure for all ills.

Those of us who either had CBD or cared for a loved one with CBD get very irritated when we see the misuse of the letters CBD referring to cannabis oil.

[bazooka111 in reply to kenh1]

Noted and edited. I care for my mother who has CBD / Corticobasal... I do understand the frustration however in the commonly used acronym of CBD.

[kenh1 in reply to bazooka111]

Thank you. I wish you and your mother well.

I just wanted to ensure others reading the posts may not get confused.

Best wishes.

Ken.😊

[Sebuly14]

My husband’s neurologist prescribed Baclofen 10 mg at bedtime for spasms in his arm. She told us it might make him sleepy. It has worked well and he has not had a spasm while sleeping since starting this med.

[bazooka111 in reply to Sebuly14]

Thats exactly where we are -- 10 mg at bedtime. Her spasms are in her right foot -- everything is not he right side that tends to bother her. Her right hand is turning in, and she is losing use of it, sadly. Now -- the toes on her right foot -- quite painful, so I am praying this stuff works. So far so good.

[Sebuly14 in reply to bazooka111]

My husband has been on it for several months and has not had a spasm in his right arm since starting the med. his right arm and hand are not functional and the toes on his right foot are starting to curl. Some times the right leg will move and other times he just can’t get it to move. We are happy with the medication so far. Hope it works!

[bazooka111 in reply to Sebuly14]

Sounds identical to my Mom --- its amazing how the characteristics can be specific to one another, and then completely different from others. Praying that it works --- so far so good. Crossing fingers!

[daddyt]

Hi Kim - I've been on Baclofen for about four years now. It's a muscle relaxant and can make a person tired, although that has not been my experience. As others have suggested, it may take some time for your mom to experience to the drug's intended effect. I think I'd take the tiredness over the pain. You can also soak her foot in warm water with epsoms salts and massage her toes. It may not help with the toes curling, but hey, who doesn't like a good foot rub.

Tim x

[bazooka111 in reply to daddyt]

Hey Tim! It is amazing that you don't get tired from it -- so different for each person I suppose -- it really made Mom tired, but we've cut back, and I think we've found the dosage that is working, at least for now. As for good foot rub ... GREAT IDEA! Hope you're well -- Kim

[Marilyn_cbd12]

Kim, my husband tried it, on two different occasions, and it did not help him. He was sleepy and lethargic and with no benefit coming from the med, he stopped taking it both times.

Marilyn

[bazooka111 in reply to Marilyn_cbd12]

Hello Marilyn - So, thats exactly what happened to mom with the 20 mg at bedtime -- she was so sleepy and lethargic -- to the point that she looked at me and whispered, "I don't feel like myself" --- I called the Doc and slowly reduced -- it does seem to be working ... time will tell. I hope all is well in your part of the world. Kim

[Birdlover415]

Hi, Kim. I have CBD and have been taking 10 mg of Baclofen 3 times a day for almost a year now. It has helped with the muscle spasms in my affected arm but my right hand fingers are still distorted and the toes of my right foot are starting to curl under slightly. My doctor encouraged me to easy into the full prescription over several days and from what I understand, you have to ease off of this medication slowly as well. I’ve had no ill effects from this medication and have not noticed being more tired than normal. I hope you can find the right medication and/or dosage that will help your Mom.

[bazooka111 in reply to Birdlover415]

Thank you for your insight --- yes -- I didn't realize in the beginning with this new med that it had to be eased into --- and wow did it hit mom hard. So we have slowly backed off ... Moms right foot looks really bad with the toes curling --- and it looked so painful when she was having the spasms. Her right hand has curled and I have to literally pry her fingers open; she is holding a soft small stress ball most of the day just to keep her fingers from digging into her palm - I have also had to learn how to give manicures! I am not good at that -- really not good -- I paint rocks ... but not finger nails. Poor thing ... she just smiles at me and says, "it looks good" .. and we both know ... I would never get hired at a nail salon!

[Birdlover415 in reply to bazooka111]

I’m sure they are the best manicures she has ever had, done with so much love.

[HilsandR]

You’ve had some good responses Kim. Sometimes we just have to accept that to help with one distressing symptom there often has to be a trade-off with a new medication worsening another symptom - in your mom’s case the tiredness and as Tim said, he’d take the tiredness over the pain, which given the choice I think we all would. Give the new drug time, sometimes the side effects can lessen. This is all so darned hard, you get on top of one thing only to find you are then looking for a resolution for something else.

One day at a time, there’s no other way.

Love Hils

x

[bazooka111 in reply to HilsandR]

Hey Hils --- Absolutely right. Its a trade off thats for sure --- right now, or at least this past few days, I believe that we may have found the right dosage --- one day at a time. Regardless of the med, she is still sleeping more and more --- I miss her so much ... I miss our conversations .... accepting this reality is just the hardest thing to overcome mentally. Anticipated grief isn't anything I ever imagined in my lifetime. --- Thanks for always listening friend.

(hugs)

Kim