Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Tricia, and thanks for the advice, but drinking water is something that has not helped. I have had a history of migraines, but never had more than two in one year before, and had have had migraine free years. I have been to the ER prior to this year 5 times with a migraine. One doctor there at the time suggested I may have been dehydrated, and that the next time I felt a bad headache coming I should drink as much water as possible. It didn't always work, but did help many times. in the last three or four weeks, I have been drinking water more than I ever have at any other time in my life. It hasn't helped at all. I have, however been drinking less soda because of this, and actually enjoy ice cold water now as a drink, instead of something I "had" to drink. Have a good one, Kirk. "Kirk/headaches" Hi Kirk, Maybe this is a bunch of bahooey, but I read yesterday that something that can help relieve severe headaches is to drink LOTS of water and to cut way down on sugar. I have no idea how you are doing in the water drinking or sugar eating dept. but, it would be worth a try. Love & hugs to you and yours, Wisconsin, Tricia 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 June 17, 2004 Report Share Posted June 17, 2004 Hi Kirk My name is and i've been dianosed with stills for ten years now.I can relate with your headaches,most of mine start at the back of my head and work to the side and then behind my eye and when this happens ER here I come.Although I try my darndest to avoid that.so far i've experienced this recent headache for a month and a half.eventually it will go away short of a couple shots of morphine.No really it sounds wierd but I usually can lower the pain with lime juice,I litterally take fresh lime and grind the juice out and drink it for some reason it seems to work. I know it may seem strange but maybe it will help.Kirk Bonanny wrote: I never have had any jaw pain at all. The pain is always in two of three places, (when it is in all of these I am usually on the way or in the ER) my forehead, one eye or the other (when they both hurt I am in for it BIG time!) and the rest of my head. I say the rest of my head as that is the only way I can describe it. The pain at that point is so intense, I can not isolate it. I have had several of these this year. Twice in January, including the beauty that had me in the hospital. That one lasted 3 full days. Two in February, including a repeat of the January beauty. Three in March, with the worst one of my life while in the hospital, it lasted almost 7 days. I had no major headaches in April, although I did have a few that were close. May to date I have had 5 or 6 of them, including the one that sent me to the ER last Tuesday. I have been keeping a running journal on my day to day health, and have been looking for anything that may be triggering any or all of this. So far, there is no consistency that I can detect. Kirk. Re: "Kirk/headaches" Kirk, Do you have pain in your jaw, temples or where a crown would sit? Have you ever been checked for TMJ? Do your jaws click? A hidden headache cause for me was the arthritis in my jaw. Noone ever thought to check that out. Now I wear a splint and it helps the head aches immediately. The also gave me some "freeze shot" stuff that you aim at your muscles and freeze the spasm. You have to massage the muscle to get it warm enough again but that stuff was not only "cool" but great. Just an idea to add to the rest. IF you have had them for years, have you been tested by an alergy doc to see what you are allergic to? Maybe you are getting exposed to an allergen that you are not aware of that causes the headaches. HMM ... wonder if an alergy pill would help the headaches at all. Ask your doc to check for TMJ and if you can take an allergy pill as a trial headache reliever. Surely he has a sample of a couple of different ones for you try. Smiles, Caroline Currently with a second day migraine and temp of 100. Inside house is 95 an outside is worse. We fixed the air. I can't take heat in the first place and with a fever, I am sick, sick, sick. I think thats why I have the migraine, too much heat. Smiles, Caroline. Kirk Bonanny wrote: Hi Tricia, and thanks for the advice, but drinking water is something that has not helped. I have had a history of migraines, (Beautiful Southern Oregon, USA) We may not be able to change the direction of the wind, but we can adjust our sails. May you have enough happiness to make you kind, enough trials to make you strong, enough sorrow to keep you human, enough hope to make you happy. Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! 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 June 17, 2004 Report Share Posted June 17, 2004 Kirk, how was your fever patterns at your onset or during any flares, I know I have your history somewhere I need to find it. There are several members that no longer post who developed migraines after getting stills. There is not much in the literature about a connection between stills and migrains. Did your doctors tell you that Vioxx, Celebrex and Bextra will raise your blood pressure, they cause fluid retention. That could possilbly be the cause of your BP. Have they done a CT scan or MRI on your brain? To rule out possible tumors, or anyerisuems or strokes, all which have symptoms of headaches, some severe, high BP. What was your lab results that you were comparing to the ones on the websites, like what was your sed rate at onset, and did they do the ferritin test. Were you RA and ANA neg. Also have they run Anticardiolipin antibodies, or Anti-RO (Anti-SSA AntiSSB) antibodies. Sometimes with stills there is kidney involvememnt, it is rare, very rare, called amyloidolosis. Also you can pass red blood cells through your kidneys with stills, docs arent sure if it's due to the Nsaids or the stills itself. How is your hemoglobin and crit levels. I used to do this for members in the group alot, go over their symptoms exactly and research and sometimes can come up with a reason why something is happening, I dont do it any longer but I would be glad to do it for you. I want to start doing it again. As long as people realize that Im not a doctor or a medical professional and anything I say is my personal opinion, but I just pull an opinion out of my arse if you get my drift. One of the red flags for druggies seeking meds in ER are the ones who come in with headaches. That is probably why you are having a harder time. I have never had this problem because of the amount of joint involvemtt and damage being done that was very visible and the doctors knew there was no way not to be in intense pain when your hip joint is worn out, so they kept me well medicated with dilauded and demerol until I could get the hip replacemnt a month later, a few weeks after the surgery I didnt need any pain meds. And I went for years only needing a tylenol here and there until lately, my other hip needs replacing. My docs dont give me any grief about prescribing darvocet for my hip, Ive been on it for 3 years now and I have become tolerent to the med as it doesnt work that great any longer but Im afraid to go to something stronger. My body is now dependent on the darvocet. If I skip doses or dont take any for a day, by that night Im paying for it and I start to have mild withdrawal symptoms, so I take one cause I dont want the DT's ever. So Im afraid if I go to oxycontin my body will become physically addicted, not psychology addicted. It's a fine line and a difficult job for ER docs to see through the ones who are just drug seeking. Once you get the brochures please take them to the ER so they will have them on file, and give all the ER docs and nurses access to our site and access to Dr. Cush's articles. Even if you are not there to be treated just stop by and give it to them. It is the only we that we are going to get these ER docs aware of stills and keep it in mind if they dont know what is wrong with the personl I want to have 5 brochures in every Rheumatologist office out there, and then they can make more copies on their own. And I want all ER docs to have them. That is going to be my next big undertaking as soon as I can get the website straightened out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 I will try anything at this point. 10 years and you still suffer? I wish my Dr gave me a written guarantee when they told me not to worry, as this would soon be over. That was in February! I don't know how anyone can deal like this for that long. Morphine works for you? It used to for me, as the last migraine trip to the ER I made in 2001 was relieved by morphine. It does nothing for me now though. Lime juice....I will have to try it....help if I add some Corona? LOL just kidding. Thanks ! Re: "Kirk/headaches" Kirk, Do you have pain in your jaw, temples or where a crown would sit? Have you ever been checked for TMJ? Do your jaws click? A hidden headache cause for me was the arthritis in my jaw. Noone ever thought to check that out. Now I wear a splint and it helps the head aches immediately. The also gave me some "freeze shot" stuff that you aim at your muscles and freeze the spasm. You have to massage the muscle to get it warm enough again but that stuff was not only "cool" but great. Just an idea to add to the rest. IF you have had them for years, have you been tested by an alergy doc to see what you are allergic to? Maybe you are getting exposed to an allergen that you are not aware of that causes the headaches. HMM ... wonder if an alergy pill would help the headaches at all. Ask your doc to check for TMJ and if you can take an allergy pill as a trial headache reliever. Surely he has a sample of a couple of different ones for you try. Smiles, Caroline Currently with a second day migraine and temp of 100. Inside house is 95 an outside is worse. We fixed the air. I can't take heat in the first place and with a fever, I am sick, sick, sick. I think thats why I have the migraine, too much heat. Smiles, Caroline. Kirk Bonanny wrote: Hi Tricia, and thanks for the advice, but drinking water is something that has not helped. I have had a history of migraines, (Beautiful Southern Oregon, USA) We may not be able to change the direction of the wind, but we can adjust our sails. May you have enough happiness to make you kind, enough trials to make you strong, enough sorrow to keep you human, enough hope to make you happy. Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! 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 June 19, 2004 Report Share Posted June 19, 2004 I have started a journal on May 12th I think, and update it when I have time. I printed it out for my last doctor visit, but like a moron, left it on the kitchen table. I have found no pattern with these headaches related to food. At one point I thought that gasoline may be a trigger, as I had a nasty migraine the night after doing two fuel pump jobs in one day, but have done several more fuel pumps/gas tanks and not had the headache. I don't consciously eat anything with artificial sweeteners in it, but one never knows what is in all of this garbage today. I have cut out junk food most of the time as I can't stand to see my gut catch up to my chest!!! I generally eat a small breakfast (either Wheaties or toast w/ butter) to keep the pills from torturing me all day, half of a home made hoagie for lunch or soup, and lately have not been eating supper. If I could get away with it, I would not eat breakfast either, but I can't take the "blow torch" type burn that I get when I don't take the pills with food. I have also become paranoid from ice cream, as the last time I had some with my kids, I was in the ER that night. It probably had nothing to do with the headache though, as it was already a real bad one before I ate it. Thanks for the thoughts, Kirk. Re: "Kirk/headaches" Kirk..I was just thinking about reasons why you are getting these headaches. This is just a thought...Do you eat anything with artificial sweeteners, like aspartame ..etc? Two of my friends cannot tolerate artificial sweeteners. They get major migraines. Keep track of what you are eating on a daily basis. Maybe start a journal for your doctors to read. My Rheumy has me doing a daily journal for him so he can see my daily aches and pains of sort.Carey 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...
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