Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Hi there Kirk, About your headaches. Lordy they do sound terrible, and I'm sure that's an understatement! I'm wondering if they aren't from inflammation from the blasted dragon...? Hopefully these Enbrel injections will be of help. Has your doctor mentioned the possibility of adding Methotrexate? It does seem that *most* folks must add something such as the MTX along with the Enbrel to find the relief they need. Just a thought in case you find that the Enbrel doesn't *do* it. I feel so sorry for your poor wife having to watch her sweetheart suffer so. I do not know how I could mentally handle it if it were my husband who has been fighting with this AOSD dragon for these many years. It's got to be a "helpless" feeling. You are so correct about using painkillers responsibly. You seem to have your ":ducks in a row" so to speak, and handling things as best you can. I do so wish for your sake and that of your loved ones that those darned headaches would stop. Take care friend. Wisconsin, Tricia -- Re: Pain killers I am too the point that becoming addicted means less to me than dealing with the pain. I take Vicodin as needed for the pain, but use my head with it. I won't take it unless I am 1) not working 2) not driving 3) not the only one around with the kids 4) the pain (mainly headaches) is truly intense. My dilemma is that the last couple of headaches I have had were not even fazed with the Vicodin, including one on Tuesday night where I took two Vicodin within an hour. I have had three Vicodin since yesterday at around 6:00 PM and still have an annoying headache that is on the verge of exploding. Up until last month, 15 Vicodin I got in January lasted me until mid- April. The last refill has almost been wiped out in the last 8 or 9 days. I get inconsistent BRUTAL headaches, and usually a few of them in a row. None of my doctors have had an answer for this, and I am seriously considering going to a pain management center. When I am in pain, I am not a very nice guy. My wife doesn't deserve this, my kids certainly don't deserve it, nor does anyone else who may just happen to "get in my way". That is no way to live, and no way to treat others. Even when my legs are "on fire" and I can barely move, that pain doesn't usually get to me until you add a headache to the mix. I can only think of one time that I took a narcotic painkiller without a headache, and that was the night I was released from the hospital in April. My left wrist and right knee hurt so bad I was damn near in tears. That has been the exception, thankfully. If you find the pain killers help, use them. Just use your head with them, and only take them when you know for a fact you need to. Hope you feel better, Kirk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Kirk, we are thinking of you and praying for your relief, lots of thoughts coming your way guy! Louise. Kirk Bonanny wrote: > Tricia, my PCP has told me that he believes the headaches are a > result of the inflammation in my body. My main problem with that is > the fact that no one has been able to give me a solution to the pain I > have with these headaches. > I just started Enbrel on Wednesday, and gave myself my second > injection today, so I am not at all surprised I haven't found relief > yet. I just hope it happens soon. > I see my rheumatologist on June 7th, so hopefully will gain a > little ground there. My PCP and my rheum seem to be a very good > combination, it is just that every time I see them I feel better than > I do now. For as much as I don't want to be in the hospital again, I > can almost feel another trip coming on. I feel I am right as I am not > even fighting the urge not to go back as I was two weeks ago. If I > feel bad enough, I am going. It is close to that point now. > I wish I could better communicate my pain intensity to them with > these headaches. I thought they were clearing up as I didn't have a > bad one in May until the 20th, but since then have had three, with > this last one lasting 3 days (with varying degrees of pain) to date. > The only reason I am even replying now is that I can not sleep, and I > have an icepack wrapped around my head. My eyes are almost shut, and > my eyelids seem swollen. Nights are fast becoming hell for me, > although I suppose that is better than it being worse in the daytime. > At least I can still work and support my family. > I know this has to be hurting my wife, but I have been good to her > (according to her) lately. I know for a fact I put her and everyone > else associated with me through hell in early April, including myself. > It took me quite some time to accept and deal with this, and I am not > all the way there yet. I really have to thank you and the rest of the > group for helping keep things in perspective, and being an incredible > source of information and support. > Thanks again, Kirk. > > */ Re: Pain killers/ > / / > / / > / / > / I am too the point that becoming addicted means less to me than > dealing with the pain. I take Vicodin as needed for the pain, but > use my head with it. I won't take it unless I am 1) not working 2) > not driving 3) not the only one around with the kids 4) the pain > (mainly headaches) is truly intense./ > / / > / My dilemma is that the last couple of headaches I have had > were not even fazed with the Vicodin, including one on Tuesday > night where I took two Vicodin within an hour. I have had three > Vicodin since yesterday at around 6:00 PM and still have an > annoying headache that is on the verge of exploding. Up until > last month, 15 Vicodin I got in January lasted me until mid- > April. The last refill has almost been wiped out in the last 8 or > 9 days./ > / / > / I get inconsistent BRUTAL headaches, and usually a few of them > in a row. None of my doctors have had an answer for this, and I am > seriously considering going to a pain management center. When I am > in pain, I am not a very nice guy. My wife doesn't deserve this, > my kids certainly don't deserve it, nor does anyone else who may > just happen to " get in my way " . That is no way to live, and no way > to treat others./ > / / > / Even when my legs are " on fire " and I can barely move, that > pain doesn't usually get to me until you add a headache to the > mix. I can only think of one time that I took a narcotic > painkiller without a headache, and that was the night I was > released from the hospital in April. My left wrist and right knee > hurt so bad I was damn near in tears. That has been the exception, > thankfully./ > / / > / If you find the pain killers help, use them. Just use your > head with them, and only take them when you know for a fact you > need to. / > / / > / Hope you feel better, Kirk./ > / / > > / > > > > > > / > / / > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Kirk, we are thinking of you and praying for your relief, lots of thoughts coming your way guy! Louise. Kirk Bonanny wrote: > Tricia, my PCP has told me that he believes the headaches are a > result of the inflammation in my body. My main problem with that is > the fact that no one has been able to give me a solution to the pain I > have with these headaches. > I just started Enbrel on Wednesday, and gave myself my second > injection today, so I am not at all surprised I haven't found relief > yet. I just hope it happens soon. > I see my rheumatologist on June 7th, so hopefully will gain a > little ground there. My PCP and my rheum seem to be a very good > combination, it is just that every time I see them I feel better than > I do now. For as much as I don't want to be in the hospital again, I > can almost feel another trip coming on. I feel I am right as I am not > even fighting the urge not to go back as I was two weeks ago. If I > feel bad enough, I am going. It is close to that point now. > I wish I could better communicate my pain intensity to them with > these headaches. I thought they were clearing up as I didn't have a > bad one in May until the 20th, but since then have had three, with > this last one lasting 3 days (with varying degrees of pain) to date. > The only reason I am even replying now is that I can not sleep, and I > have an icepack wrapped around my head. My eyes are almost shut, and > my eyelids seem swollen. Nights are fast becoming hell for me, > although I suppose that is better than it being worse in the daytime. > At least I can still work and support my family. > I know this has to be hurting my wife, but I have been good to her > (according to her) lately. I know for a fact I put her and everyone > else associated with me through hell in early April, including myself. > It took me quite some time to accept and deal with this, and I am not > all the way there yet. I really have to thank you and the rest of the > group for helping keep things in perspective, and being an incredible > source of information and support. > Thanks again, Kirk. > > */ Re: Pain killers/ > / / > / / > / / > / I am too the point that becoming addicted means less to me than > dealing with the pain. I take Vicodin as needed for the pain, but > use my head with it. I won't take it unless I am 1) not working 2) > not driving 3) not the only one around with the kids 4) the pain > (mainly headaches) is truly intense./ > / / > / My dilemma is that the last couple of headaches I have had > were not even fazed with the Vicodin, including one on Tuesday > night where I took two Vicodin within an hour. I have had three > Vicodin since yesterday at around 6:00 PM and still have an > annoying headache that is on the verge of exploding. Up until > last month, 15 Vicodin I got in January lasted me until mid- > April. The last refill has almost been wiped out in the last 8 or > 9 days./ > / / > / I get inconsistent BRUTAL headaches, and usually a few of them > in a row. None of my doctors have had an answer for this, and I am > seriously considering going to a pain management center. When I am > in pain, I am not a very nice guy. My wife doesn't deserve this, > my kids certainly don't deserve it, nor does anyone else who may > just happen to " get in my way " . That is no way to live, and no way > to treat others./ > / / > / Even when my legs are " on fire " and I can barely move, that > pain doesn't usually get to me until you add a headache to the > mix. I can only think of one time that I took a narcotic > painkiller without a headache, and that was the night I was > released from the hospital in April. My left wrist and right knee > hurt so bad I was damn near in tears. That has been the exception, > thankfully./ > / / > / If you find the pain killers help, use them. Just use your > head with them, and only take them when you know for a fact you > need to. / > / / > / Hope you feel better, Kirk./ > / / > > / > > > > > > / > / / > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Tricia, my PCP has told me that he believes the headaches are a result of the inflammation in my body. My main problem with that is the fact that no one has been able to give me a solution to the pain I have with these headaches. I just started Enbrel on Wednesday, and gave myself my second injection today, so I am not at all surprised I haven't found relief yet. I just hope it happens soon. I see my rheumatologist on June 7th, so hopefully will gain a little ground there. My PCP and my rheum seem to be a very good combination, it is just that every time I see them I feel better than I do now. For as much as I don't want to be in the hospital again, I can almost feel another trip coming on. I feel I am right as I am not even fighting the urge not to go back as I was two weeks ago. If I feel bad enough, I am going. It is close to that point now. I wish I could better communicate my pain intensity to them with these headaches. I thought they were clearing up as I didn't have a bad one in May until the 20th, but since then have had three, with this last one lasting 3 days (with varying degrees of pain) to date. The only reason I am even replying now is that I can not sleep, and I have an icepack wrapped around my head. My eyes are almost shut, and my eyelids seem swollen. Nights are fast becoming hell for me, although I suppose that is better than it being worse in the daytime. At least I can still work and support my family. I know this has to be hurting my wife, but I have been good to her (according to her) lately. I know for a fact I put her and everyone else associated with me through hell in early April, including myself. It took me quite some time to accept and deal with this, and I am not all the way there yet. I really have to thank you and the rest of the group for helping keep things in perspective, and being an incredible source of information and support. Thanks again, Kirk. Re: Pain killers I am too the point that becoming addicted means less to me than dealing with the pain. I take Vicodin as needed for the pain, but use my head with it. I won't take it unless I am 1) not working 2) not driving 3) not the only one around with the kids 4) the pain (mainly headaches) is truly intense. My dilemma is that the last couple of headaches I have had were not even fazed with the Vicodin, including one on Tuesday night where I took two Vicodin within an hour. I have had three Vicodin since yesterday at around 6:00 PM and still have an annoying headache that is on the verge of exploding. Up until last month, 15 Vicodin I got in January lasted me until mid- April. The last refill has almost been wiped out in the last 8 or 9 days. I get inconsistent BRUTAL headaches, and usually a few of them in a row. None of my doctors have had an answer for this, and I am seriously considering going to a pain management center. When I am in pain, I am not a very nice guy. My wife doesn't deserve this, my kids certainly don't deserve it, nor does anyone else who may just happen to "get in my way". That is no way to live, and no way to treat others. Even when my legs are "on fire" and I can barely move, that pain doesn't usually get to me until you add a headache to the mix. I can only think of one time that I took a narcotic painkiller without a headache, and that was the night I was released from the hospital in April. My left wrist and right knee hurt so bad I was damn near in tears. That has been the exception, thankfully. If you find the pain killers help, use them. Just use your head with them, and only take them when you know for a fact you need to. Hope you feel better, Kirk. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Tricia, my PCP has told me that he believes the headaches are a result of the inflammation in my body. My main problem with that is the fact that no one has been able to give me a solution to the pain I have with these headaches. I just started Enbrel on Wednesday, and gave myself my second injection today, so I am not at all surprised I haven't found relief yet. I just hope it happens soon. I see my rheumatologist on June 7th, so hopefully will gain a little ground there. My PCP and my rheum seem to be a very good combination, it is just that every time I see them I feel better than I do now. For as much as I don't want to be in the hospital again, I can almost feel another trip coming on. I feel I am right as I am not even fighting the urge not to go back as I was two weeks ago. If I feel bad enough, I am going. It is close to that point now. I wish I could better communicate my pain intensity to them with these headaches. I thought they were clearing up as I didn't have a bad one in May until the 20th, but since then have had three, with this last one lasting 3 days (with varying degrees of pain) to date. The only reason I am even replying now is that I can not sleep, and I have an icepack wrapped around my head. My eyes are almost shut, and my eyelids seem swollen. Nights are fast becoming hell for me, although I suppose that is better than it being worse in the daytime. At least I can still work and support my family. I know this has to be hurting my wife, but I have been good to her (according to her) lately. I know for a fact I put her and everyone else associated with me through hell in early April, including myself. It took me quite some time to accept and deal with this, and I am not all the way there yet. I really have to thank you and the rest of the group for helping keep things in perspective, and being an incredible source of information and support. Thanks again, Kirk. Re: Pain killers I am too the point that becoming addicted means less to me than dealing with the pain. I take Vicodin as needed for the pain, but use my head with it. I won't take it unless I am 1) not working 2) not driving 3) not the only one around with the kids 4) the pain (mainly headaches) is truly intense. My dilemma is that the last couple of headaches I have had were not even fazed with the Vicodin, including one on Tuesday night where I took two Vicodin within an hour. I have had three Vicodin since yesterday at around 6:00 PM and still have an annoying headache that is on the verge of exploding. Up until last month, 15 Vicodin I got in January lasted me until mid- April. The last refill has almost been wiped out in the last 8 or 9 days. I get inconsistent BRUTAL headaches, and usually a few of them in a row. None of my doctors have had an answer for this, and I am seriously considering going to a pain management center. When I am in pain, I am not a very nice guy. My wife doesn't deserve this, my kids certainly don't deserve it, nor does anyone else who may just happen to "get in my way". That is no way to live, and no way to treat others. Even when my legs are "on fire" and I can barely move, that pain doesn't usually get to me until you add a headache to the mix. I can only think of one time that I took a narcotic painkiller without a headache, and that was the night I was released from the hospital in April. My left wrist and right knee hurt so bad I was damn near in tears. That has been the exception, thankfully. If you find the pain killers help, use them. Just use your head with them, and only take them when you know for a fact you need to. Hope you feel better, Kirk. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Kirk, My headeaches have increased a ton since I became sick and for me it is a real problem as I have a VP shunt in my brain for hydrocephalus. So every headache I get is a possible shunt failure and brain surgery. It has been really hard as I cannot afford to have a CT scan with each headache, but not being hyper vigilant could mean slipping into a coma and dying also. I slipped into a coma without warning in 2001 so my headaches not only hurt real bad but they give me tremendous anxiety. I don't know what to tell you for relief. Percocet helps some with them, but sometimes when it wears off the headache just comes back. I had one in February that lasted about 3 weeks. I do feel your pain. Lynn Re: Pain killers I am too the point that becoming addicted means less to me than dealing with the pain. I take Vicodin as needed for the pain, but use my head with it. I won't take it unless I am 1) not working 2) not driving 3) not the only one around with the kids 4) the pain (mainly headaches) is truly intense. My dilemma is that the last couple of headaches I have had were not even fazed with the Vicodin, including one on Tuesday night where I took two Vicodin within an hour. I have had three Vicodin since yesterday at around 6:00 PM and still have an annoying headache that is on the verge of exploding. Up until last month, 15 Vicodin I got in January lasted me until mid- April. The last refill has almost been wiped out in the last 8 or 9 days. I get inconsistent BRUTAL headaches, and usually a few of them in a row. None of my doctors have had an answer for this, and I am seriously considering going to a pain management center. When I am in pain, I am not a very nice guy. My wife doesn't deserve this, my kids certainly don't deserve it, nor does anyone else who may just happen to "get in my way". That is no way to live, and no way to treat others. Even when my legs are "on fire" and I can barely move, that pain doesn't usually get to me until you add a headache to the mix. I can only think of one time that I took a narcotic painkiller without a headache, and that was the night I was released from the hospital in April. My left wrist and right knee hurt so bad I was damn near in tears. That has been the exception, thankfully. If you find the pain killers help, use them. Just use your head with them, and only take them when you know for a fact you need to. Hope you feel better, Kirk. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Kirk, My headeaches have increased a ton since I became sick and for me it is a real problem as I have a VP shunt in my brain for hydrocephalus. So every headache I get is a possible shunt failure and brain surgery. It has been really hard as I cannot afford to have a CT scan with each headache, but not being hyper vigilant could mean slipping into a coma and dying also. I slipped into a coma without warning in 2001 so my headaches not only hurt real bad but they give me tremendous anxiety. I don't know what to tell you for relief. Percocet helps some with them, but sometimes when it wears off the headache just comes back. I had one in February that lasted about 3 weeks. I do feel your pain. Lynn Re: Pain killers I am too the point that becoming addicted means less to me than dealing with the pain. I take Vicodin as needed for the pain, but use my head with it. I won't take it unless I am 1) not working 2) not driving 3) not the only one around with the kids 4) the pain (mainly headaches) is truly intense. My dilemma is that the last couple of headaches I have had were not even fazed with the Vicodin, including one on Tuesday night where I took two Vicodin within an hour. I have had three Vicodin since yesterday at around 6:00 PM and still have an annoying headache that is on the verge of exploding. Up until last month, 15 Vicodin I got in January lasted me until mid- April. The last refill has almost been wiped out in the last 8 or 9 days. I get inconsistent BRUTAL headaches, and usually a few of them in a row. None of my doctors have had an answer for this, and I am seriously considering going to a pain management center. When I am in pain, I am not a very nice guy. My wife doesn't deserve this, my kids certainly don't deserve it, nor does anyone else who may just happen to "get in my way". That is no way to live, and no way to treat others. Even when my legs are "on fire" and I can barely move, that pain doesn't usually get to me until you add a headache to the mix. I can only think of one time that I took a narcotic painkiller without a headache, and that was the night I was released from the hospital in April. My left wrist and right knee hurt so bad I was damn near in tears. That has been the exception, thankfully. If you find the pain killers help, use them. Just use your head with them, and only take them when you know for a fact you need to. Hope you feel better, Kirk. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Kirk.. Lynn Dave,,,and everyone I wish you peace and comfort Hugs Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Kirk.. Lynn Dave,,,and everyone I wish you peace and comfort Hugs Liz NJ Quote Link to comment Share on other sites More sharing options...
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