Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 , are you talking about the " vice-grip effect " ? That is the best way I know how to describe the way it feels. Sometimes it is like something has just exploded inside my head in different areas. I can be walking along, or sitting and all of a sudden, I'm grabbing my head trying to push the pain down....... make any sense? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi : here. Need some info now on headaches that people experience. I've been developing headaches now for about 2 weeks and am starting to get concerned that the RP may be progressing and causing this. I know several in the group have terrible headaches and I need your input. My headaches are almost like sinus. Start behind the eyes and almost feel like they are draining in the back of my throat but I don't have a stuffed up nose. Temple areas on both sides get sore to touch and my eyes just want to close. Can be very, very painful and not much helps except if I take Fioricet. I have a few left from an old prescription (not outdated though) and they seem to help so that would seem to contradict the sinus theory because what Fioricet does is open blood vessels in brain and let more blood through. Problem is I can't get anymore since docs don't like you to take these. I am calling doc today to schedule appointment to see what I should do. Have NO real hope that they will know what to do but figure I could arm myself with as much knowledge as possible so that hopefully I can suggest something to them to do. Am going to get bloodwork soon including SED rate to see if that is elevated. Never has been yet but don't like the temple area getting so sore. Want to make sure temporal arteritits isn't starting. With the vasculitis and RP you have to be soooooo careful. I spoke with last night. She's tough and hanging in there, please pray for her and her family so that she turns this difficult time around. She mentioned to me that the RP has pretty much destroyed her sinuses and gone into the bone. She suggested that I get a CT scan of the sinuses. I'm going to try to make my doc order one of those ASAP. Does anyone have any literature I can take to the doc to support this? Hopefully docs I have are pretty good at letting me get what needs done so hope it continues. This darn disease just seem to eat away at our bodies everywhere. Has anything helped with the headaches except the pred? Has anyone tried to migraine meds you inhale? Didn't know if it would work. I sure hope that this isn't RP related but gut feeling is that it is. I've been doing pretty good lately and feeling better than I have in a long time but boy these headaches stink!!!! Well any input would be appreciated when you get the chance. Look for the rough draft of the list to be posted later tonight and check your info for me. Angie, Cyrus, and others, your contantly on my mind and in my prayers. I hope everyone has at least one small victory today over this terrible disease. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 , This is . I don't know how much help I can offer. Even though I was diagnosed in 1994 I'm not as knowledgeable about RP as some of the others. But many times over the years I have suffered with terrible headaches in the sinus and temple areas. Didn't experience them before the RP and have been told by doctors since that they were probably related which to me means that they don't know for sure. Sometimes before flare ups and or during, I have had headaches in the sinus area so bad that I would have call the doctor and go to the emergency room for a shot. In the last few months I've had to go to the doctors office for shots because they would turn into full blown migraine headaches with nausea and sometimes vomiting. I was given Demerol and compazine in pill form first, then in a shot if that didn't work. Then I was tried on some of the migraine medications that seem to work for a while. Now I take percocet at the first sign of pain which seems to come it most of the time. If I wait too long even that doesn't help. At first the doctors didn't want to give me the percocet as often because it's a barbiturate but see now that it is necessary. Also as some of the others, I put warm washcloths on my sinus and temple areas. Sometimes it gives some relief. Do you get nauseated with yours? I still sometimes take promethazine with the pain medication to help with that. You should definitely tell your doctor to check it out. Sometimes I don't think they realize just how bad the pain is that we experience although they try. This isn't much help but yes, I do know what you're experiencing. God Bless, Headaches > > > Hi : > > here. Need some info now on headaches that people experience. > I've been developing headaches now for about 2 weeks and am starting to > get concerned that the RP may be progressing and causing this. I know > several in the group have terrible headaches and I need your input. > > My headaches are almost like sinus. Start behind the eyes and almost > feel like they are draining in the back of my throat but I don't have a > stuffed up nose. Temple areas on both sides get sore to touch and my > eyes just want to close. Can be very, very painful and not much helps > except if I take Fioricet. I have a few left from an old prescription > (not outdated though) and they seem to help so that would seem to > contradict the sinus theory because what Fioricet does is open blood > vessels in brain and let more blood through. Problem is I can't get > anymore since docs don't like you to take these. I am calling doc today > to schedule appointment to see what I should do. Have NO real hope that > they will know what to do but figure I could arm myself with as much > knowledge as possible so that hopefully I can suggest something to them > to do. > > Am going to get bloodwork soon including SED rate to see if that is > elevated. Never has been yet but don't like the temple area getting so > sore. Want to make sure temporal arteritits isn't starting. With the > vasculitis and RP you have to be soooooo careful. > > I spoke with last night. She's tough and hanging in there, please > pray for her and her family so that she turns this difficult time > around. She mentioned to me that the RP has pretty much destroyed her > sinuses and gone into the bone. She suggested that I get a CT scan of > the sinuses. I'm going to try to make my doc order one of those ASAP. > Does anyone have any literature I can take to the doc to support this? > Hopefully docs I have are pretty good at letting me get what needs done > so hope it continues. This darn disease just seem to eat away at our > bodies everywhere. > > Has anything helped with the headaches except the pred? Has anyone > tried to migraine meds you inhale? Didn't know if it would work. I > sure hope that this isn't RP related but gut feeling is that it is. > I've been doing pretty good lately and feeling better than I have in a > long time but boy these headaches stink!!!! > > Well any input would be appreciated when you get the chance. Look for > the rough draft of the list to be posted later tonight and check your > info for me. > > Angie, Cyrus, and others, your contantly on my mind and in my > prayers. I hope everyone has at least one small victory today over this > terrible disease. > > Take care, > > > > > ------------------------------------------------------------------------ > If you took PodiminT, Redux®, or the combination " Fen-Phen, " > visit the OFFICIAL site. Request the Court authorized notice package > explaining your rights under the class settlement. > http://click./1/833/0/_/32049/_/951218314/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 : Thanks for the info on the headaches. Have gotten sick to my stomach with them but not all the time. I'm going to the doc on monday and will see if I get any assistance there LOL. I appreciate any info on headaches since this is pretty new to me. Really stinks though. Have to consider myself lucky though compare to the hell some of you are going through right now so I'm not complaining. Hope everyone has someone to hug today! Take care, moose wrote: > > > > , This is . I don't know how much help I can offer. Even > though > I was diagnosed in 1994 I'm not as knowledgeable about RP as some of > the > others. But many times over the years I have suffered with terrible > headaches in the sinus and temple areas. Didn't experience them > before the > RP and have been told by doctors since that they were probably related > which > to me means that they don't know for sure. Sometimes before flare ups > and or > during, I have had headaches in the sinus area so bad that I would > have > call the doctor and go to the emergency room for a shot. In the last > few > months I've had to go to the doctors office for shots because they > would > turn into full blown migraine headaches with nausea and sometimes > vomiting. > I was given Demerol and compazine in pill form first, then in a shot > if that > didn't work. Then I was tried on some of the migraine medications that > seem > to work for a while. Now I take percocet at the first sign of pain > which > seems to come it most of the time. If I wait too long even that > doesn't > help. At first the doctors didn't want to give me the percocet as > often > because it's a barbiturate but see now that it is necessary. Also as > some > of the others, I put warm washcloths on my sinus and temple areas. > Sometimes it gives some relief. Do you get nauseated with yours? I > still > sometimes take promethazine with the pain medication to help with > that. You > should definitely tell your doctor to check it out. Sometimes I don't > think > they realize just how bad the pain is that we experience although they > try. > This isn't much help but yes, I do know what you're experiencing. God > > Bless, > Headaches > > > > > > > > Hi : > > > > here. Need some info now on headaches that people experience. > > > I've been developing headaches now for about 2 weeks and am starting > to > > get concerned that the RP may be progressing and causing this. I > know > > several in the group have terrible headaches and I need your input. > > > > My headaches are almost like sinus. Start behind the eyes and > almost > > feel like they are draining in the back of my throat but I don't > have a > > stuffed up nose. Temple areas on both sides get sore to touch and > my > > eyes just want to close. Can be very, very painful and not much > helps > > except if I take Fioricet. I have a few left from an old > prescription > > (not outdated though) and they seem to help so that would seem to > > contradict the sinus theory because what Fioricet does is open blood > > > vessels in brain and let more blood through. Problem is I can't get > > > anymore since docs don't like you to take these. I am calling doc > today > > to schedule appointment to see what I should do. Have NO real hope > that > > they will know what to do but figure I could arm myself with as much > > > knowledge as possible so that hopefully I can suggest something to > them > > to do. > > > > Am going to get bloodwork soon including SED rate to see if that is > > elevated. Never has been yet but don't like the temple area getting > so > > sore. Want to make sure temporal arteritits isn't starting. With > the > > vasculitis and RP you have to be soooooo careful. > > > > I spoke with last night. She's tough and hanging in there, > please > > pray for her and her family so that she turns this difficult time > > around. She mentioned to me that the RP has pretty much destroyed > her > > sinuses and gone into the bone. She suggested that I get a CT scan > of > > the sinuses. I'm going to try to make my doc order one of those > ASAP. > > Does anyone have any literature I can take to the doc to support > this? > > Hopefully docs I have are pretty good at letting me get what needs > done > > so hope it continues. This darn disease just seem to eat away at > our > > bodies everywhere. > > > > Has anything helped with the headaches except the pred? Has anyone > > tried to migraine meds you inhale? Didn't know if it would work. I > > > sure hope that this isn't RP related but gut feeling is that it is. > > I've been doing pretty good lately and feeling better than I have in > a > > long time but boy these headaches stink!!!! > > > > Well any input would be appreciated when you get the chance. Look > for > > the rough draft of the list to be posted later tonight and check > your > > info for me. > > > > Angie, Cyrus, and others, your contantly on my mind and in my > > prayers. I hope everyone has at least one small victory today over > this > > terrible disease. > > > > Take care, > > > > > > > > > > > ------------------------------------------------------------------------ > > > If you took PodiminT, Redux®, or the combination " Fen-Phen, " > > visit the OFFICIAL site. Request the Court authorized notice package > > > explaining your rights under the class settlement. > > http://click./1/833/0/_/32049/_/951218314/ > > > ------------------------------------------------------------------------ > > > > > hi and welcome. maybe we can come up with answers that our doctors > can't > > > > > > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > hi and welcome. maybe we can come up with answers that our doctors > can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 In a message dated 02/23/2000 6:20:54 PM Central Standard Time, susuw@... writes: << If I find a site you can buy them at, I'll let you guys know. >>>>>>>>>>>>>>>>>>>>> >> I need that when ever you can get around to it! Thanks Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 I forgot to metion something in my last post n hadahes: if you notice a change in the patrn ofyour headaches it is VERY importan to let your doctor knowabout this. they wil also ask you aboutthe pattr of your heaaches so it helps o keep trak ie are the front back, side, top adthe nekline, are they throbng, jabbing, constant constantwith sudden jabs, when do they ccur ie in tha am, pm do you wke up with them. does anything in particularbring hem on and so on and so forth it hels the dotors to dignosis and treat slee disorers like sleep apnea(lie i have) can also cuse hedches as well as fod allergies etc dx and treating headaches is an art itink so many thingscan cuse them sometins you just have to try one med after another t find one that works, ggood luck love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 , Excerin makes me hyper. I can't take it. All I can take is Advil and not much of that anymore. When my knee first started acting up, I took 1,000 mgs a day for it and it helped. But now the ole stomach is revolting against it and I have been on Vioxx for about a year. It has really helped lots. >>>>>>>>>>>>>>>>>>>>>>>>> From: dlbmo@... excedrin also sometimes works for me but i have to be careful it is veryhard on my stomac love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 Lu, Angie told me it was ........................somewhere and now I've forgotten. ANGIE help!!!!! She ordered one also. Oh, in case you forgot what I'm talking about, it's the " Herbie " for headaches. It's a bag of herbs that can be heated or frozen for whatever ache you have. >>>>>>>>>>>>>>>>>>>>> << If I find a site you can buy them at, I'll let you guys know. >>>>>>>>>>>>>>>>>>>>> >> I need that when ever you can get around to it! Thanks Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Hi Janis, Headaches are a pretty common occurrence during pregnancy. My OB gave me the ok to take Tylenol to treat them. Of course, I'd check with your OB before taking any meds. Blessings, Jordan's Mommy ( in California) headaches I have been have awful headaches 2-3 times per day. I don't have a clue whats causing them. My eyes aren't sore even though I stare at a computer about 8 hours a day. I don't seem to need glasses and the headaches have seemed to come on all of a sudden in the past 2 weeks. They go away for a bit during the day, but come back again full force. I don't have any ideas. I was wondering if anyone else was having them or had any opinions as to what was causing them. FYI, I'm 17 weeks. Thanks Janis edd 09/21/02 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Its bad when you annoy yourself! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 How many ounces of water do you drink a day? Do not count any beverage that has caffeine in it as part of your total daily liquid intake, actually anything w/ caffeine would be counted as a deficit. O edd 5-25-02 headaches I have been have awful headaches 2-3 times per day. I don't have a clue whats causing them. My eyes aren't sore even though I stare at a computer about 8 hours a day. I don't seem to need glasses and the headaches have seemed to come on all of a sudden in the past 2 weeks. They go away for a bit during the day, but come back again full force. I don't have any ideas. I was wondering if anyone else was having them or had any opinions as to what was causing them. FYI, I'm 17 weeks. Thanks Janis edd 09/21/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Water is an excellent idea! > > I have been have awful headaches 2-3 times per day. I don't have a > clue whats causing them. My eyes aren't sore even though I stare at > a computer about 8 hours a day. I don't seem to need glasses and the > headaches have seemed to come on all of a sudden in the past 2 > weeks. They go away for a bit during the day, but come back again > full force. I don't have any ideas. I was wondering if anyone else > was having them or had any opinions as to what was causing them. > FYI, I'm 17 weeks. > > > > Thanks > > > > Janis > > edd 09/21/02 > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > Its bad when you annoy yourself! > > > > > > Quote Link to comment Share on other sites More sharing options...
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