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Thread: This pain HAS to stop NOW! :(

  1. #191
    Wow Becky! Just been catching up here... I have mixed feelings; I am sorry you continue to have so much pain, yet hopeful that you may finally be close to getting some answers.

    For me knowledge is power, it's kind of weird maybe, but just "knowing" what "IT" is, being able to label the problem, some how helps to feel a little sense of control or power over a situation.

    I hope you and your docs discover what works best for you soon. Gentle hugs

    @ THC LOL prehistoric snaggletoothed fish reminded me of a Bill Engvall skit about a "DORK FISH"
    Last edited by Still Learning; 05-23-2010 at 09:29 PM.
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

  2. #192
    Here is the prehistoric snaggletoothed dork fish skit I mentioned!

    http://www.youtube.com/watch?v=HG3dzXPU8eo
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

  3. #193

    may help you get some sleep........

    Hi all,

    I admit I didnt read all the pages of this thread so if this was mentioned i'm sorry. I am a para and i've had terrible pain since my injury as well. I have been on vicodin, percocet, fentanyl patches, neurontin, lyrica, cymbalta, and currently on oxycontin 40 3x/day with perks for breakthru pain. I still have AWFUL pain all the time but I do not have problems sleeping due to pain. This may be because I have been taking 50mg of seroquel at night since before my injury 2 years ago. I began taking it in addition to my effexor to help my anxiety and depression. The dose is the lowest one available but it mainly helps me by KNOCKING ME OUT. I take it right before I go to bed and within 30 minutes i am OUT. It has the same effect now as it did when I first started taking it. I dont know if it does much for my anxiety but it definetly helps me sleep. Even when I go to bed with excruciating pain I fall right asleep. 2 months ago my physciatrist tried taking me off of it for a few weeks and I couldnt sleep at all. My pain kept me up all night long so I went back on it and I am back to sleeping all night long. They also use this medication for veterans with PTSD who cannot sleep. If you were to take this dose right before bed you would probably not notice any effects other than knocking you out cold. And it may even help with any anxiety or depression assuming you have any, which dealing with pain you probably do. I would suggest asking your doctor about the possibility of using this med to help you obtain a good nights sleep as it has helped me so much. It will not be a medication for everyone though. When I take it at night within 30 minutes my vision starts "fading" and I start to get extremely sleepy. Within an hour I am out cold. This doesnt even touch Nyquil. I hope this helps to give you something else to consider talking with their doctor about. Good luck
    Last edited by tason28; 10-09-2010 at 08:42 AM. Reason: Wanted to stress to talk to your doctor about this

  4. #194
    tason - seroquel is an antipsychotic med. Did you have a diagnosis of a mental illness prior to your injury? I am glad it helps you sleep though. I read through the side effects of seroquel and it doesn't seem like the first line med for insomnia.

  5. #195
    Arndog, yes prior to my injury I had some anxiety issues and mild depression which I was on Effexor for years for. My physciatrist prescribed me seroquel shortly before my injury to assist the effexor because I had been having more anxiety issues that the effexor wasnt helping as much for. I was also having problems sleeping due to the anxiety. She stated that although seroquel is normally used for more serious mental disorders such as schizophrenia, the dosage in these instances is 400mg and up. She said that the 50mg I was taking was the lowest dosage possible and it was simply to assist the effexor in controlling my anxiety as well as help me sleep. These lower doses are what I have been told are being prescribed to soldiers returning home from war who have troubles with ptsd which is causing them to not sleep well or at all. Although I agree that it is listed as an antipsychotic I am being prescribed it for anxiety purposes only. My doctor said it is commonly used in conjunction with effexor, paxil, and similar meds to assist their working. I did not intend to state that this is a med I feel everyone having sleep issues should go out and ask for a script for, but if you already suffer from some form of anxiety or depression as well as an inability to sleep well, it may be worth talking to your doctor about. I know this helps me ALOT to sleep through the night and I sleep very deeply when I take it. As i stated it also allows me to sleep through the night even when my pain is immense. I just wanted to let others know about this to give them some other options to talk to their DOCTOR about. I do not have any psychotic disorders, just anxiety and mild depression issues. Thank you for raising your concern as it is not a medication for everyone. But as i stated my dosage is extremely low and I now use it primarily to be able to get a good nights sleep. I am not a doctor though, I simply wanted to let others know what works for me. Without the seroquel my pain would keep me up all night and I would not sleep well at all if I finally did fall asleep.
    Shawn

  6. #196
    Shawn - thanks for your explanation and clarification. I didn't realize that Seroquel was being used for returning soldiers with PTSD, interesting. May I ask if your doctor is a pain specialist, a psychiatrist, or an internist? It is interesting to learn that the low dose is able to help. That certainly is the case with Elavil which I take at 25 mg at night which is well under the dosing used if it were to be given as an antidepressant but seems to help with neuropathic burning along with Lyrica or Neurontin.

  7. #197
    Arndog

    The doctor who prescribes the seroquel is my psychiatrist. I also see my physiatrist who now handles my pain issues. I had been at a pain clinic but as many of you know the pain clinics are often less than helpful or understanding. The doctor at the pain clinic seemed to not have any idea on how to help me and I got sick of being treated like an addict.

    I know seroquel is an antipsychotic which could make people think it would be unsafe or not for them. But I want to point out that many meds are used for "off label" purposes such as effexor (an antidepressant) being used for neuropathic pain relief as well as neurontin (anti seizure med) being used for neuro pain relief as well.

    I personally have no side effects at all from the seroquel aside from extreme drowsiness, which is the side effect that I am actually taking it for. The drowsiness wears off after about 8 hours so it is just long enough for me to get a good nights sleep. The seroquel also definetely makes a difference in combatting my anxiety and depression, so it is a win-win for me. This definetely may not be the case for everyone, but for someone suffering from terrible chronic pain, such as myself, who also cannot get to sleep because of it, anything that could help would be worth talking to your doctor about.

    I am only trying to give others some different ideas for dealing with the inability to sleep because of pain. I know many of us deal with low energy and motivation just due to life as a para or quad, and not getting a good nights sleep just adds to this as well. I hope that maybe this suggestion could help others as well.

    Taking medications for purposes other than the stated purpose is quite common, such as why i take ditropan. I personally have no bladder spasms or problems which warrant taking ditropan, but I take it for the side effects. Ditropan causes people to sweat less as a side effect and I began taking it to combat my terrible night sweats. Since beginning to take it I havent had a night sweat in over a year. Of course dry mouth is another side effect which I have, but compared to waking up every night in a pool of sweat, I welcome the dry mouth.

    One of the great things about this forum and others like it is learning from eachother about ways that others combat the issues brought about from spinal cord injuries, and for me the seroquel helps me to sleep through my pain and at least overcome one of the MANY obstacles we have to deal with so maybe it could help some of you as well.

    I hope this helps someone else and if anyone has any questions for me regarding this please feel free to ask.
    Shawn

  8. #198
    Great post, Shawn.

    Totally agree with you about off label uses. For example, Lyrica for neuropathic pain from SCI is off label. It is FDA approved for diabetic neuropathic , and post herpetic neuralgia.
    I take elavil which is also an off label use for neuropathic pain. I also utilize its side effect of drowsiness to help with sleep although I need more help with ambien.

    I will keep Seroquel in mind.

  9. #199
    Junior Member
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    I understand when you say you are tired of having this pain. I was dx with central pain syndrome and it is driving me crazy!!! I can't sleep, don't want to eat, can't find a comfortable position to sit, stand or lay down. Driving a car has been getting worse and the pain has decided to mess with me in my elbows, hands, neck and feet when I am driving. I take Neurontin 3800 mg a day plus Ultram. If I don't have Neurontin you might as well forget me going anywhere or doing anything...I am a miserable person. I feel so inadequate because I see everyone else working and having fun or doing things they like to do but I know I can't do these things. I like to dance but after I do I am extremely sorry and will be in the bed for about two days afterwards. I hate this sooooo bad!!! I want to get disability to help with the bills but they don't recognize CPS yet....
    no clue

  10. #200
    Noclue,

    I feel for you. I fortunately do get disability. I worked from the time i was 15 til i became disabled at 28. I never had more than a week over all those years where I was without a job. From 18 til I became disabled I held a job as an elevator constructor with the same company the whole time. I loved my job and I was advancing so fast. I was always a person who had a strong work ethic, and when I became disabled, applying for disability was a tough decision for me. Fortunately, my family, wife, and social worker all said that I should definetly apply because I had worked hard to earn the social security. It took me almost a year to finally get over thinking I deserved the disability. Now, considering all the pain i have and how debilatating it has made my life, ( not counting the whole spinal cord injury thing...) I am so thankful I get disability payments. There is NO way I could work a normal job in my current situation.

    I cant begin to imagine how bad it must be for you. If you have pain thats as debilatating as mine, but yet have to also find a way to work, that is awful. I cant believe Social Security doesnt acknowledge CPS, although I feel that it is probably due to the large number of people who try to claim they have that type of pain, and truly DO NOT. It is extremely unfortunate for you that you lose out due to, what i feel, is a problem caused people trying to file fraudulent claims. CPS, seeing as it is not completely understood, and hard to prove as of now, is an easy disorder for people to claim they have, even though many do not.

    My prayers go out to you, and I wish you luck in your attempts at acquiring disability in the near future. Or better yet, for you, me, and everyone suffering from any type of chronic pain, I wish for a cure.

    I noticed that you are not on any narcotic pain relief meds like oxycontin, percocet, morphine, fentanyl, etc........ Have you already tried taking narcotic meds? My first doctor after my injury, had a strong disbelief in prescribing narcotic meds. He had me on 4000mg of neurontin a day, and when that still didnt work, he started me on lyrica as well( an almost identical med) and just continued to raise this dose. Naturally this did nothing for me, and I had to seek out a new doctor. When I was finally prescribed some narcotic meds, it made a HUGE difference in my pain. They have by no way gotten rid of all of my pain, but at least I can be somewhat active during the day now, and occasionally finally have days now and then where I have almost no pain. Had I been stuck with the first doctor I would still be stuck in bed every day, in awful pain.

    I wish you luck, and I feel for you, as I am sure many others on this site do as well.

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