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Medication used for the MS hug

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Unread 02-22-2014, 11:20 AM   #1
justjane37
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Default Medication used for the MS hug

Hi all,
I am posting this on behalf of my mother. She has Primary Progressive MS. For the past year she has been suffering from extreme tightness and pressure all around her chest. She describes it as if she has a tight band around her. She has breast-reduction surgery a few months ago. It did help to alleviate some of her back and shoulder pain but the "hug" is getting worse. It is very debilitating for her.

I have been doing some research about medication for this. There seems to be a lot of choices out there. She is relatively sensitive to medication but wants to try something. Her doctor does not seem to have very much knowledge about this. He is willing to help her though. He has suggested Neurontin.

Looking for people with the "hug" that have taken medication that has helped with their symptoms. I would also like to know of any side effects that you experienced.

Medications that are on my short list are--Neurontin, Tegretol, Baclofen, Cymbalta and Elavil.

Any feedback is very appreciated.

Thank you
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Unread 02-22-2014, 12:18 PM   #2
Erika
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I use Baclofen and find that it gives the most relief with the fewest side effects. I am also very sensitive to meds and react negatively to most. High doses of Baclofen can cause dizziness and weakness, but it beats the pain and constriction of the HUG.

Some of which you have listed, I have tried and found that they did not work for pain/spasms and also caused problems with balance, vision, headache and tremors.

I hope that your mom gets relief.

With love, Erika
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Unread 02-22-2014, 12:49 PM   #3
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I've been using baclofen and it does 'calm' the pain in my ribs down. It doesn't make it go completely away, but makes it much more tolerable. I hope your mother gets some relief for her pain!

Amy
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Unread 02-22-2014, 08:14 PM   #4
missj
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no hug- but other spasticity.

Team Baclofen!
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Unread 02-22-2014, 10:55 PM   #5
barb02
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Unfortunately neither baclofen nor Neurontin as well as a host of other meds have helped with the hug that I experience in my rib cage or back.
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Unread 02-22-2014, 11:10 PM   #6
tkrik
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I take Neurontin for the nerve pain I get with the hug and it does help me. I still get breakthrough pain every now and then and during a flare. As for an antispasmodic, I couldn't tolerate baclofen and the neuro tried me on valium but that was too strong also. I now use Ativan and it seems to work well for me.

Keep in mind that everyone is different and reacts differently to medications. What works for one person may not work for another.

I hope your mom finds some that works for her. Let us know how she is doing.
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Unread 02-23-2014, 03:31 AM   #7
Erin524
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I use baclofen or valium.

Valium (5mg dose) is a bit strong for it usually, so I break the valium up into either halves, or quarter sized bits. The Hug is from the intercostal muscles spasming, so a muscle relaxer or antispasmodic is what I'd reach for before reaching for neurontin. (I also can't take neurontin. It causes me to swell up with edema. Not an allergic response of edema. But fluid of some sort)

consult the doctor about what to take tho. Because I'm not a doctor. Just an MSer.
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Unread 02-23-2014, 10:20 AM   #8
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Ativan does help my mom. She takes it for anxiety. Yesterday was an especially bad day and she said that Ativan helped with the hug.

Quote:
Originally Posted by tkrik View Post
I take Neurontin for the nerve pain I get with the hug and it does help me. I still get breakthrough pain every now and then and during a flare. As for an antispasmodic, I couldn't tolerate baclofen and the neuro tried me on valium but that was too strong also. I now use Ativan and it seems to work well for me.

Keep in mind that everyone is different and reacts differently to medications. What works for one person may not work for another.

I hope your mom finds some that works for her. Let us know how she is doing.
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Unread 02-23-2014, 10:26 AM   #9
justjane37
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Thanks for all of the replies. She is going to see her doctor on Wednesday. It sounds like Baclofen and Neurontin are the two meds she should look into. She has taken Neurontin in the past and didn't have problems with it. She seems to have become much more sensitive to medication as she gets older though.

She does take Ativan for anxiety and she has noticed that it helps with the hug. I think she should try a longer term medicine though before she succumbs to the fact that she may have to deal with this daily.

I will be going with her to her appointment. We will see what the doctor says but I have learned through my mom's illness and my own (I have Trigeminal Neuralgia) that you have to become your own specialist and advocate.
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Unread 02-23-2014, 01:40 PM   #10
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For me, the Hug isn't a daily thing, so I don't have to use the baclofen or valium every day. Well, I do take baclofen every day, but usually only at night. I only occasionally have to take a little extra baclofen for the Hug.

I don't like using valium very often either. So the valium only gets used usually if the Hug is just being a bit too loveable that day. (when I say loveable, I really mean <bad swear word> annoying)
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