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    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.

    Comment


      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

      Comment


        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.

        Comment


          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

          Comment


            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.

            Comment


              Update.....

              Sorry, after reading your post again Noclue, I saw you are on ultram. I am not very familiar with this med, is it a narcotic med?

              If so, then disregard my question about trying narcotic meds. Although, if it is a narcotic med, have you tried any of the other ones I mentioned?

              Comment


                More on pain, the details...

                Becky! Man I feel for you deeply as I am an experienced pain man. I just posted this on an old forum but Iʻm posting it again because we are all in basically the same sinking boat, a boat with holes of pain.


                MY PAIN: 24/7 when I sleep, of course I do not feel pain, but I wake up every 2 to 3 hours to pain jabbing my left abdomen left buttock and of course the all consuming burning pain.

                My pain runs in the 4 to 8 zone 24/7. I use Fentynal Patch 75 24/7 - Ibuprofun 8 a day - Endocet 10/325 4 a day - Lyrica 50 mg 3 times a day - Diazepam 5mg 2 times a day - of course none of these really relieves me of pain. The pain now is causing long term headaches because of the tension through my body puts so much pressure on my body/mind. Now I am taking 2 aspirin a day just for the headaches.

                So, ". weed is natureal and grows in the dirt."

                I smoke marijuana and yes it helps but it DOES NOT relieve the pain. It relieves my mind, relaxes me to a point where I can sit through a movie at home and somewhat enjoy myself. It allows me to relax. I am unable to smoke all day long.

                (I have a pipe on my night stand, and about 4 nights a week I wake up to the pain and have several tokes one Endocet one Diazepam and 4 Ibuprofen)

                Su- E - side; doncha love the phonics of this word?

                Si - E - Side "Medically assisted suicide (euthanasia, or the right to die) is currently a controversial ethical issue involving people who are terminally ill, in extreme pain..."

                WHY should this be controversial? Who is against it? Are those that oppose it in EXTREME PAIN for more than 12 hours a day? In OREGON it is legal and this is where I will go. I am looking into the process of how it can take place.

                Iʻve read some posts, not my posts; "Oh no, please donʻt think that way. Donʻt take your life I beg you!" "Think of your family and friends." Well in truth your family and friends are in no way able to pretend that you are doing fine. PAIN shows itself to anyone close to those with chronic pain.

                Are these oppose-ers in EXTREME PAIN? If you are not, then shut your mouth, because you have NO IDEA of what it is like to gradually become somewhat of a hermit, unable to socialize or make new friends, enjoy fun activities, belly laugh, in short: Have good upbeat fun!

                EXTREME PAIN - Who can live for over 10 to 20 years with EXTREME pain?

                Who are you? What super powers do you possess? I have lived with this pain for over 22 years, have had several doctors cry and were unable to hide the tears from me during consultations. My family, my spouse all KNOW how I suffer. I do not talk about it often. I keep a lot of it to myself. The pain will only get worse for those who experience it. The pain will get worse so get proactive now!

                DREZ: I am a good candidate for the DREZ surgery at Craig - I am in the process of getting the needed CAT scans and MRIʻs necessary before Doctor Falci will make the final approval. I NEED this surgery and will have it done, otherwise I will be looking at leaving my body voluntarily.

                I am a paraplegic of 32 years - the mean and nasty pain for over 22 years -

                Now today - having spilled hot tea down my shoe 6 days ago, burning my foot - a Deep Second Degree burn - there is a maybe 20% chance that a skin graft can be done - otherwise it is amputation. This is two different doctors opinions.
                Gary Is = L-1 Para for 34 years.....................
                ~~~~~~~~~~

                Comment


                  Originally posted by arndog View Post
                  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.

                  I was also given seroquel while at The Shepherd Center. First benadryl, which I thought was crazy, then ambien, which did nothing and my roommate there told me her Doc had her on seroquel and she always slept good. I requested it from my doc and once I got it, it was like heaven. A full night of sound sleep. Although it is an anti-depressant, one of it's side effects is drowsiness, so the docs at Shepherd's prescribes it in lower doses for insomnia.
                  __________________________________
                  C4/5 functioning on a C6 level, use of left hand, no triceps

                  Comment


                    Originally posted by Buffie View Post
                    I was also given seroquel while at The Shepherd Center. First benadryl, which I thought was crazy, then ambien, which did nothing and my roommate there told me her Doc had her on seroquel and she always slept good. I requested it from my doc and once I got it, it was like heaven. A full night of sound sleep. Although it is an anti-depressant, one of it's side effects is drowsiness, so the docs at Shepherd's prescribes it in lower doses for insomnia.
                    Adding to your testimony, Seroquel is used more often than we think despite its classification as an anti-psychotic. I've never tried it, but know people who've used it.

                    Comment


                      Gary,

                      Thanks for posting. You are in Hawaii. I may be wrong, but aren't you more likely to get away with Marijuana there than in Oregon.


                      If it is not too personal, which island are you on?

                      Aloha

                      P.S. You said you were "reposting". Does that mean you already had the DREZ. Did it help?

                      Comment


                        i loved it!

                        Comment


                          Originally posted by dejerine View Post
                          Gary,

                          Thanks for posting. You are in Hawaii. I may be wrong, but aren't you more likely to get away with Marijuana there than in Oregon.


                          If it is not too personal, which island are you on?

                          Aloha

                          P.S. You said you were "reposting". Does that mean you already had the DREZ. Did it help?
                          The DREZ is on hold while the severe burn on my foot is being dealt with. I have a VAC Pump attached to the wound 24/7 and this restricts my mobility. I will need a skin graft at some point. I am getting the DREZ though, this is for sure. The pain just gets worse even with the increase of the Fentynal 75 mpg and Lyrica to 225mg a day a low dose yes but it is being increased slowly.

                          Oregon is pretty loose in marijuana use/laws as it is in Hawaii, California has the medical marijuana law and yes you can acquire it fairly easy if you have a pain doc. But smoking it does not get rid of the pain, it just makes it bearable.
                          Gary Is = L-1 Para for 34 years.....................
                          ~~~~~~~~~~

                          Comment


                            First of all
                            Wow
                            Everyone here in pain I wish I could make you all feel better
                            I know first hand that pain sucks SCI pain is something of a mystery imop

                            Many of you were mentioning a medicine named Seroquel

                            Imop it is a great medicine to help me at times have a good nights rest

                            It is prescribed for many ailments Ive used it for years and think it is top notch .

                            Ok Getting bck to the topic
                            I forget the amount of things , organisms and other sporus life forms that suck and Pain Definitely Sucks Still Pain just sucks

                            and the beat goes on Da Da Da di Da
                            The Beat goes on ( That's just my heartbeat ) As I sit in Pain
                            No use in me complaining life is a pain in the A--

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