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afroney

Dystonia Pain

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Hi Mark -


What are some of the medication options for treating chronic, severe pain from Dystonia?

I have very painful spasms on a daily basis.  My MDS has added more Sinemet and Baclofen to try to prevent the spasms, but both seem to have lost their effectiveness over time.  Botox was ruled out due to the location of the spasms, and surgery isnt an option at this point.

I've read that opioid medications can provide relief, but my doctors seem to tip toe around perscribing them... To me, the pain can be a 10/10, - on a similar level to when my colon ruptured and they had to remove it via a 20" long incision a few years ago. 

I'd really appreciate your insight on this.  The pain is often crippling and is starting to chip away at my sanity.

 

 

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Afroney,

Great question. There are two main muscle relaxers used for dystonia, Baclofen and Zanaflex. Both are very effective but can lose effectiveness over time.

I see you have been on Baclofen and it seems to have decreased in it's effectiveness. I am not sure what dose you are at, sometimes higher doses may get better results. The maximum daily dose for Baclofen is 80mg per day usually taken 20mg four times a day. If you are below that dose it may be worth a try to increase the dose before changing to a different medication.

There are certain opiod medications that have a smaller muscle relaxant quality than Baclofen but have a greater pain relief. The most commonly used opiod is Norco. Norco contains Hydrocodone, a derivative of codeine, and Acetaminophen, Tylenol. The Acetaminophen is a very good anti-inflammatory while the Hydrocodone is a very good pain reliever. It is dosed according to pain level and the usual starting tablet strength is 5/325 mg. That means that one tablet contains 5mg of Hydrocodone and 325mg of Acetaminophen. It does come in a higher strength, that being 10/325 mg. This tablet has 10mg of Hydrocodone and 325mg of Acetaminophen.

I hope this helps and please keep me posted.

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I, also, suffered horribly from the painful spasms of Dystonia.  I preferred Zanaflex over Baclofen.  I have come across an OTC product that has worked wonderfully for me.  This product has allowed me to decrease the amount of prescription medication I take, or use to take on a daily basis.  Perhaps, you could discuss using this with your doctor..  This awesome decoction is known as  DE-STRESS MUSCLE GEL by  AROMATHERAPY ASSOCIATES.  

Mark, could you go to their website and look at the ingredient list and give your opinion?  I rub this on the arch of my foot, between my toes and on my calf.  Not much is needed because it spreads easily. The amount of relief it gives me is amazing.  Thank you, Mark.

Dear afroney,  I strongly urge you to avoid traveling down the opioid highway.  The decision to do so may intensify and increase your current list of problems.  Rather than opioids, try .25 mg  Xanax and 1000 mg Turmeric with Black Pepper (for increased absorption) twice a day.  Use the DE-STRESS MUSCLE GEL at bedtime.Good Luck.  I will pray for you.

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Curious,

I looked at the De-stress website and I agree it can be beneficial. The essential oils and natural ingredients are can be beneficial for the relief of the muscle issues. 

I actually had a spinal cord stimulator implant placed on the muscles in my back. This actually relieves about 80-85% of my dystonia.

I usually don't recommend an opiod or pain medication for muscle relaxation. I also agree there are alternatives to opiod medications. There is truly nothing better than a nice deep tissue massage.

I hope this helps and please keep me posted.

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23 hours ago, MComes RPH said:

Curious,

I looked at the De-stress website and I agree it can be beneficial. The essential oils and natural ingredients are can be beneficial for the relief of the muscle issues. 

I actually had a spinal cord stimulator implant placed on the muscles in my back. This actually relieves about 80-85% of my dystonia.

I usually don't recommend an opiod or pain medication for muscle relaxation. I also agree there are alternatives to opiod medications. There is truly nothing better than a nice deep tissue massage.

I hope this helps and please keep me posted.

Thanks for the advice.

Actually, one of my docs recommended a spinal stimulator for my ongoing problems with arthritis.  I had no idea they could be used for dystonia as well.  I'll have to look into that again when I'm healthy enough for another surgery. Sounds like it could kill two birds with one stone.

I'm currently on 20mg Baclofen per day.  Sounds like there's room to go still. 

Norco is what I was on following the surgery and for the Cdiff infection pain.  Your post seems to confirm why it was so effective with the dystonia pain as well. 

 

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Afroney,

Dystonia is my major issue with having PD. Being a pharmacist I knew of every possible medication that could help, and tried them to no avail.

Approximately 8 years ago I saw a Pain Management Specialist who was very forward thinking and willing to try the stimulator. It was an idea we worked on together and, at the time, was the first surgery of it's kind in the world. The stimulator used is the same one used to control pain.

The idea was to place a stimulator in the lower back with leads that went to the muscles that were dystonic. When activated, small electrical impulses are sent to the muscles to confuse them when going into spasm. The confusion decreases, or ultimately stops, the spasm. 

The stimulator is controlled with a remote and I am able to control the area and amplitude of the electronic impulses in the laying, seated, and standing positions. I have to change the stimulator about once every 3 weeks.

The stimulator has only been shut of once about 7 years ago by my physician to make sure all the leads are working. The pain was so intense and the spasms were so bad that I could not reactivate the stimulator by myself. It has been a true miracle.

I hope this helps and please keep me posted.

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Hey Mark,

glad that works for you. What happens when you need more juice cause your body becomes tolerant, do they put in bigger batteries? 

And I guess you beep at the airport going through security? 

When I had spinal issues the orthopedic doc suggest a device like yours. I turned it down and just decided to opt for pain meds to treat bulging discs and SI joint problems and arthritis meds for bone spurs. I had several rounds of radio frequency ablation RFA, where they burn your spinal nerves. 

Turns out that a lot of the pain and stiffness that I suffered from was Parkinson’s related. I suspected something was up when the orthopedic doc was having trouble getting his needles inserted in my back for a procedure and asked if I had been working out cause it was as stiff as concrete. I wasn’t working out at all cause it was too painful. 

Now that I’m on Rytary and Azilect, I barely notice any back pain or shoulder pain on most days. I hope that lasts  for a long time. I do take bacolfin for dystonia but I’ve cut that back from 30 mg to about 20 mg and some days just 10 mg . 

-S

Edited by Superdecooper

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Super,

I'm actually able to control the range and strength of the electrical charge to the leads. There is a max level of current that can be obtained, but I have never come close to using it. When the level does get a bit too high the result is some tingling in that area.

I do have to present a card at airport security. This procedure has actually been less due to the enhancement of non-magnetic security screening.

I have tried several medications for PD and muscle relaxation that have helped, but not to the extent of the stimulator. 

I hope this helps and please keep me posted.

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On 10/12/2018 at 10:40 AM, MComes RPH said:

Afroney,

Dystonia is my major issue with having PD. Being a pharmacist I knew of every possible medication that could help, and tried them to no avail.

Approximately 8 years ago I saw a Pain Management Specialist who was very forward thinking and willing to try the stimulator. It was an idea we worked on together and, at the time, was the first surgery of it's kind in the world. The stimulator used is the same one used to control pain.

The idea was to place a stimulator in the lower back with leads that went to the muscles that were dystonic. When activated, small electrical impulses are sent to the muscles to confuse them when going into spasm. The confusion decreases, or ultimately stops, the spasm. 

The stimulator is controlled with a remote and I am able to control the area and amplitude of the electronic impulses in the laying, seated, and standing positions. I have to change the stimulator about once every 3 weeks.

The stimulator has only been shut of once about 7 years ago by my physician to make sure all the leads are working. The pain was so intense and the spasms were so bad that I could not reactivate the stimulator by myself. It has been a true miracle.

I hope this helps and please keep me posted.

Fascinating.  Modern medicine never ceases to amaze me. 

I am now seeing a pain specialist as well.  He mentioned the spinal stimulator as a possibility, or a Baclofen pump as an alternative. 

We are holding off on surgery until they are sure my ongoing battle with Cdiff and Sepsis is over.  In the meantime, he perscribed Norco and increased Baclofen which has helped tremendously. 

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Afroney,

It sounds like the stimulator could really help you, but I am glad that the pain medication and increased Baclofen has helped.

It is very important that the cdiff and sepsis are eradicated before you attempt any further procedures.

I hope this helps and please keep me posted.

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Shiprakhanna,

All of those items should work well for all types of pain, such as muscle, joint, or back pain. The primary thing to remember is to use it for short periods throughout the day instead of one long session. The reason for this is that cold can contact the muscles and removing the cold will expand the muscles, thus allowing muscles to move with exerting pressure on it.

This is also a good alternative to try before medication therapy is started.

I hope this helps and please keep me posted.

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Noah,

Botox is a great alternative for dystonia. Thanks for the information.

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