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Thread: Pain Management in Pgh - SO Frustrated!

  1. #11
    Senior Member Cowboys_Place's Avatar
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    I so hope your friend is able to find something that gives him some relief from his pain on this next appointment, the search for something that works can be maddening!!
    I've been trying to find something for so long I've started to lose track of what medications I've tried and haven't tried I'm slowly slipping toward the edge of insanity.

    At times I so look forward to the day I take my last breath and there is no more pain, Sorry to be negative but aside from my walls there's nowhere else to vent.
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  2. #12
    Thanks for the response Dog, fact is the pain has reached the point my mental faculties have been affected. I've confused meds but don't understand the tratment for the OP. I've tried all the different meds and don't recall which are for which. I post less due to the diminished mental state and the increasing pain, I'm also seeing a serious decline in myself and have run out of, well i am losing it

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  3. #13
    Bill- anyone who can take the kind of photos you have shared here and express beauty in such a fashion is not 'losing it' in my book.

  4. #14

    pain - Syrinx???

    Hey Nikib, I am very familiar with what your going thru. A lot of these dr.s try to put this on a different dr. for the simple reason it takes quite a few test, to figure out what this fluic sack is? I am a t-10 paraplegic. I have been experiencing a lot of paing within the last year , along with major tone and spasms in my leg. A lot of these Drs. think putting a baclofen pump in your body to stop the tone and spams will eleminiate the pain yes and no. First off they are not fixing the problem they are just giving you a bunch of medication to hide the actual problem. I myself have gone thru multiple tests the last test on tueday was a myleogram injection with dye. To check for abnormalaties in the spine area. My dr.s think i have a syrinx. which might be what you have? I am going to send you the definition of syrinx, you might want to bring that to the attention of your drs. The syrinx will grow with time and will cause pain, and all other types of symptons. good luck Nick Syrinx>>.
    Syringomyelia ( /sɪˌrɪŋɡɵmˈliə/) is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. The damage may result in pain, paralysis, weakness,[1] and stiffness in the back, shoulders, and extremities. Syringomyelia may also cause a loss of the ability to feel extremes of hot or cold, especially in the hands. The disorder generally leads to a cape-like loss of pain and temperature sensation along the back and arms. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.

  5. #15

    Dog you are kind

    couple shots from sunday through the car window

    Snowing cherry blossom petals

    and a dogwood by a stone wall

    kindly,

    ket
    Attached Images Attached Images   
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  6. #16
    Quote Originally Posted by thehipcrip View Post
    I have a heartfelt plea to all my pain forum friends -- would you please stop saying this? It’s not true.

    While narcotics don’t work for everyone [what does?] and all narcotics are not created equal [d’oh!], narcotic meds can provide relief from central and peripheral neuropathic pain.

    Methadone is my pain specialist’s drug of choice for both her central and neuropathic cancer pain patients. Both T8burst and I [and I believe others here] take methadone for relief of central pain.

    Arndog is just one of a number of CCers who use oxycodone as part of their pain management arsenal.

    Tramadol is also mentioned a lot as the central pain med of choice, although my aging mind refuses to recall who’s said that besides ~Lin.

    Apologies to the OP for the hijack. The hunt for pain relief is frustrating enough with a good doctor on your side. It’s positively maddening when you must deal with the kind of idiots you’ve encountered. Certainly there must be more than just one anesthesiologist/pain specialist in the city. And if there’s not, it’s worth the hassle to travel to where there is one [the Cleveland Clinic comes to mind].

    I hope you can find both a competent doctor who’ll work with you and a drug or combo of drugs that help soon.
    I second this. Other than the stigma that is put upon me by some Dr.s and some people who don't understand the difference between dependance and addiction. Strong opiates have worked the best for me for neuropathic pain. They also work well for my spasticity. Back to the O.P. ,,, I second what Arndog had to say.
    Has it been five years yet? ..........

  7. #17
    Quote Originally Posted by bollefen View Post
    couple shots from sunday through the car window

    Snowing cherry blossom petals

    and a dogwood by a stone wall

    kindly,

    ket

    WOW!!!! Beautiful photos!!!! You are very talented!!!! You should do a book with your photos they are simply breathtaking!!!!
    ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

  8. #18
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    Update - When we went to the last appt with the pain management doc, we explained that we can't keep running to Pgh every month to "try" something else. He agreed. He gave us a script for Lyrica (sorry I don't have it in front of me for the dosage) to try for 2 weeks, then a second script for a higher dosage (again, not in front of me). He gave us a 3rd script for Baclofen if the Lyrica doesn't help. He asked if our PCP would be willing to work with us to find the right med or combination of meds and said he would write him a letter updating our status and with the proposed treatment plan. He said that if these two meds didn't help, then he would suggest a Fentanyl patch. Oh, as a side note, the PCP didn't think the Lyrica would do much good, given the Neurontin did nothing. Before having any of the scripts filled, we went to a "natural" doctor, homeopathic, who put him on liquid Zinc, Potassium and Magnesium along with Krill oil capsules (instead of fish oil). He has been on the homeopathic regimen since April 28th, and has had no relief (sigh). We are at a loss as to what to do next. I do want to clarify, from what the doctor said (and with the description of this pain) this is not spasticity. I really don't understand this because the pain we are trying to alleviate is like a huge, fist-sized hard-as-a-rock muscle spasm on his side, sometimes going from one side to the other. When I press on it I can actually feel it when the pain subsides, the area softens and relaxes. Hopefully this additional information will spark something from someone's experiences that may help our quest for relief. Any and all suggestions, advice, thoughts and opinions are very welcome! Thanks!

  9. #19
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    The Neurontin was 300 mg three times a day; Pamelor I'm not sure but it was 2 pills at night, not sure of Zanaflex or Skelaxin dosages, but the next thing we are going to try is Lyrica 75 mg starting at 1 at night and if I'm reading the script right it can go up to 1 every 8 hours. The second script for Lyrica is 150 mg starting at 1 at night up to 1 every 8 hours. The third script is for Baclofen 10 mg one every 8 hours. I just saw a commercial that Cymbalta can help with chronic pain. Would this be an option? I read on here about Lithium. Stabbing in the dark here. What type of pain does this sound like to you, and based on that what should we try? Thanks again for all of your responses in the past and future.

  10. #20
    Quote Originally Posted by Nickib View Post
    The Neurontin was 300 mg three times a day; Pamelor I'm not sure but it was 2 pills at night, not sure of Zanaflex or Skelaxin dosages, but the next thing we are going to try is Lyrica 75 mg starting at 1 at night and if I'm reading the script right it can go up to 1 every 8 hours. The second script for Lyrica is 150 mg starting at 1 at night up to 1 every 8 hours. The third script is for Baclofen 10 mg one every 8 hours. I just saw a commercial that Cymbalta can help with chronic pain. Would this be an option? I read on here about Lithium. Stabbing in the dark here. What type of pain does this sound like to you, and based on that what should we try? Thanks again for all of your responses in the past and future.
    I'm sorry this is such a frustrating road.

    I think a huge part of the problem is that you are giving up on medicines too quickly. They are not being increased to appropriate, effective doses before the doctor decides to stop them and try something else.

    Neurontin 300mg three times a day is essentially the same as taking a sugar pill for most of us. Why didn't your doctor increase the dose?

    For all of these medicines, you have to start a low dose so that your body can adjust (if there are any side effects), and to see if it works. If there isn't an improvement, then you increase the dose. And then you wait another interval, and note any improvement. If it is still not better, and you are not having intolerable side effects (like sleepiness/confusion, tremors, dizziness etc.. whatever), then you increase more. You cannot increase it too fast (too large a dose increase or after too few days), or else you will have worse side effects. The goal is to find the lowest dose, that gives the best relief of your symptoms, with the fewest side effects. Everything is a compromise.

    My father takes 800mg of Neurontin 4 times a day. That's more then three times what you tried. It controls his pain pretty well, but he still takes 2-4 extra Tylenol #3 (with codeine) a day for pain. He does not have spasticity, so that simplifies his regimen.

    Stop looking for the next medicine. Stop exactly where you are - you have lyrica and baclofen. Have your doctor write out a detailed plan of exactly how to increase the medicine over time, what side effects to look for, and when to increase it more if you are not getting any relief. Have a plan to call the doctor to discuss your progress by phone. Appointments every 2 weeks are not necessary, and many doctors would do this (check in by phone). Only change one medicine at a time, and give it a significant interval of time before you decide if it is helping (at least a few weeks for the neuropathic pain meds, sooner for spasticity meds).

    An excellent treatment approach is a neuropathic pain med, like you have just started (Lyrica) with a very clear plan for increasing the dose of the medicine. It is very good to have another medicine to treat the spasticity (Baclofen) like you are. You need to keep records about how the pain and spasticity change over time. Finally, you need to have a 3rd medicine for "breakthrough" pain.... when the pain gets worse or simply intolerable. An opiod pain medicine is a great one to have for this. Oxycodone/vicodin etc. is fine. And keep careful track of how many you take a day. This is also an indicator as to how the other pain meds are doing. Hopefully, you stop needing as much Oxy/vicodin, as the other meds kick in.

    The combination of a neuropathic pain medicine, a spasticity medicine, and an opiod medicine is often the most effective combination for people who have difficult to manage neuro pain, with spasticity. The most troublesome side effect is sleepiness.

    I also encourage you to keep a detailed list of medicines that have been tried, at what dose, and for long. If there were any side effects that made you stop the medicine, list those. You need to keep track of this information.

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