Welcome to the Healing Well family. I am so sorry that your severe pain was the reason you had to seek us out. The Chronic Pain forum is a wonderful mix of people suffering from chronic pain due to a multitude of different causes. Like you, I suffer from various types of damaged nerve related pain, as well as muscle spasticity. I have a neurodegenerative brain disease that affects different nerve clusters in my body. After many years dealing with this, I have come to learn that pain resulting from damaged nerves is one of the hardest forms of pain to treat. I have been to several teaching institutions and have personally found that there is no one textbook formula for treating chronic nerve pain.
Please keep in mind that I am not a doctor and refer to your doctor for specific medical advice. I am only relating information that I have gathered from various doctors that I have had consults. Also - please excuse any typos. I have typing on this forum.
Frequently, doctors first try something topical like Llidoderm® patches. Lidocaine is added to the gel sticky backing on a 4 x 4 topical dressing. For many shingles patients, especially those with post-shingle nerve damage on their trunk area, these can be every helpful. At $10 a dressing, they are also expensive. The patch can be worn for 12 - 18 hours on and 6 - 8 hours off. I still find a use for them occasionally, so they are worth a trial. However, I am not sure I would want a 4 x 4 dressing stuck to my face.
Most of the consults I had immediately jumped me to the Fentanyl Patch. I am not sure whether you have trialed these, but for some people they do work nicely. It is the same medication in your Actiq, but at a much
lower strength size 1” x 1-1/4”(+/-) i. They are a thin patch with Fentanyl mixed with the adhesive. These patches can be worn up to 3 days, so they offer continuous coverage without having to remember to take pil
a pill on a regular schedule. These patches come in a variety of strengths, most doctors start with a 25 mcg patch first and then offer patients some other type of immediate release narcotic for break through pain that the patch does not handle. One problem with Fentanyl is that you have to cut back on hot showers, sauna’s. tanning beds, hot tubs, and hot baths. Anything the raises your body temperature causes the Fentanyl to be released more quickly chancing an overdose. Fentanyl is designed for patients that had already been exposed to narcotic therapy. Over time, your body will develop a tolerance to the medication and you will need higher and higher doses to get the same affect.
I never experienced great pain relief with the Fentanyl patches, so the doctors would keep increasing the dose of the patches. Actiq or Fentora are the same thing, except they were highly concentrated immediate release doses. Actiq is in a lollipop form and Fentora is a quick dissolving tablet made to go between your check and gums. These products were designed for patients with stage 3 - 4 cancer. They are very expensive $100 - $250 per dose. Sure the work, but they quickly dissolve and release the medication – last only a couple a hours. They are designed to avoid a trip to the ER for treatment of level 10. Because they are very strong they can be very addicting to some people.
I could not quite understand your posting. Do you have and a neurostimular? I have one, my doctor convinced me it was one of the last resorts to pain control. It generates a signal the masks or blurs the pain you a feeling. It does not eliminate or reduce the original pain signal. Sometimes I feel it does help me and reduce the amount of narcotics I need. Other times it just adds one more sensation on top of the pain – and it over stimulates the pain and electrical tingling sensation – putting me in a state of overload.
The best thing that I ended up getting was an intrathecal implanted medication pump. It pumps very low doses of medication (1/100th the amount of an oral dose) into a catheter that is implanted in my spinal cord. The low dose almost eliminates all the side effects associated with the narcotics. My pain is well controlled and I have a wider selection of medications available to choose from. The key to great pain control is to have a GREAT PM doctor knowledgeable about all the options available. Sometimes this requires and second and third opinion by well-educated PM Doctor. Do not rush in to any therapy without thoroughly discussing it and weighing its pros and cons.
Good luck. I am always available if you would like to talk.
Moderator for Chronic Pain and Epilepsy
Rare neurodegenerative /movement disorder called “Multiple System Atrophy”. Mobility issues,, neuropathic pain, spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory involvement, Implants: intrathecal pump & neurostimulator. Extra features: O2 & wheelchair.
Post Edited (Stella Marie) : 12/30/2009 11:39:56 AM (GMT-7)
Post Edited (Stella Marie) : 12/30/2009 9:36:27 PM (GMT-7)