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    chronic headaches
    denell0812 posted:
    hi, im new to this. im 22yrs old and have SLE (diagnosed in 2004). i have headaches everyday that my rheumy says are "lupus headaches". the only thing that seems to touch them is lortab, but because it can be addicting they dont want to prescribe it to me. ive tried tylenol, advil, excedrine.....ect. nothing seems to help. its gotten to the point where ive even gone off my meds to see if that would help. any input will help. i dont know anyone else with lupus so no one can really relate.
    HG1948 responded:

    I would see a neurologist who might want you to get an MRA or MRI to see if there is more to those headaches than just the "catch-all" lupus headaches.

    I am sure there is someone else here who might also suffer from daily headaches. Maby they will see your post and respond to your question. If you don't get any answers, repost you question later in the week.

    DarkRose321 responded:
    You should see a neurologist. I too had headaches every day that only Lortab or the like would help. I finally found a beta-blocker that helps prevent the headaches, and I found a doctor that is willing to prescribe a few lortab every month for the breakthrough headaches. Hopefully a neurologist can help you find a good preventative treatment so you won't have to worry about pain medicine addiction. You should also start a diary of what you eat, how well you sleep, and your stress and pain level every day. Food is a trigger for many people, especially foods with MSG or soy.

    Hope you find relief soon, Alicia
    sleteacher1 responded:
    I get increased migraines with increased symptoms of a flare. I take maxalt if I catch it in time and imitrex injections if it gets so bad that I am tossing my cookies.

    Good Luck!!!

    victoria756 responded:
    Hello,I started to reply but my computer went off line. have had Lupus (SLE) since 1975.Back then it took two weeks in the hospital to figure out what was wrong. Since then I've had a stroke and a few other problems. I wish and pray for you. I am doing pretty well these days. On the outside(physically) you can-not tell about the problems.(the rash is ok). To get back to your issue about the head,-aches. I have had 'those' head-aches for a long time as well,and I have tried many things from natural to what-ever. Finally,my doctor has given me LORCET,what a blessing!. I have heard they can be addicting. But when I have a head-ache I take 1(blue) And I sit with my knees to my head. Usually with-in about 30 to 45 minutes, it's gone! At least till the next one. Even with the possibility they can be addicting. I don't care, the head-aches are much worse then rehab.(I don't think I use enough of them to affect any other organs). I don't abuse them, they just work. And I am tired of all the aches and pains. The Lorcets have been the best for me so far. Maybe you can find another doctor that will prescribe them. Good Luck and try to get as much rest as you can. Hang in there.
    pattiinokc responded:
    I to have HA's everyday I wake up.I also have aches & pain & a rash on areas of my body.I don't understand alot of this stuff.I do no it has effected my job & I have to work. I don't no where to turn financially.I have work for over 30 yrs Sometimes I feel I am going crazy and its all in my head. I was dz 6/07 after a fall at work & my body with nuts. I hit my head they took to the ER & with the blessing of GOD they found a aneurysm.Anyway my immune system has gone nuts with me.I have been having to call in alot since all this has happen and I just started a new job,because were I worked at my mom leaved their and passed away their.Anyway I am beside myself and can't think of what to doo next. I guess I have been in deniel foor awhile and kept going no matter how much I hurt..Please I am all hears were to turn next. Thanks for listening. pattiinokc.
    Foxy1126 responded:
    I too suffer from Migraines and headaches. I take Topamax to prevent the sometimes weekly migraines. I also take ProVigil for my fatigue.

    I take Maxalt and Imitrex for migraines once one has started... I hope this helps.
    Camicane responded:
    Have you ever tried "medical" marijuana? It helps me with my headaches even though yours sound more frequent than mine, it may help. Marijuana is not addictive and doesn't reek havoc on your liver and kidneys the way that pain pills do (Lord knows we lupus patients don't need that!). And if you smoke it in a bong, the water helps clear a lot of the carcinogens so it's healthier that way. Marijuana also helps with my joint pain. Now if it could only do something about the hair I know I may catch hell for this post, but I am just giving some advice that works for me. Good Luck!!!
    48162 responded:
    Hi, I am also very new to this and have been experiencing all kinds of symptoms including really bad headaches. My doctor had said that because I did not have any family history of the disease that it was unlikely that I had it so he had initially told me that it could be Sarcoidosis a lung disease. But recently I found out that my fathers family has a history of the illness and my doctor has reevaluated me and has now diagnosed me with lupus. I have been experiencing all of the symptoms and they can be very painful, my headaches never go away and it has become so painful. but I have been dealing with this without any diagnosis since 2005, so just to have an answer is somewhat comforting if you know what I mean. But I pray for good health for as long as possible and I will keep you in my prayers as well. I am a young woman too and I know how it can be. Keep a smile on your face your worth it.
    lupylu responded:
    Hello, Sorry to hear that you are suffering with terrible headaches.

    You will find that headaches and migraines are common among many of us with lupus. They can be a symptom of the disease or they can be a primary headache disorder.

    What is important to realize is that some of the medications, like narcotic and advil can actually be causing the headache. If these medications are used on a regular basis you can get what they refer to as rebound headaches.

    Seeing a neurologist and having the headaches diagnosed is an important step in treating the headaches and regaining control over your life.

    I too suffered from daily and chronic headaches for years. I now see a neurologist who is also a headache specialist and runs a headache clinic. He has done wonders for my headaches. I went from having daily headaches and migraines with neurological symptoms to maybe 3 or 4 a month that are easily treated with an NSAID and that is without the use of narcotics. That is not to say that narcotics are never to be used, but I am fortunate I have a good treatment plan that allows me to treat them without narcotics. This treatment plan requires a daily headache log, taking 2 preventative medications, riboflavin (B2) and a plan to treat the headaches that sneak in early and effectively.

    Most neurologist will treat people who have chronic daily headaches with preventative medications, meds that you take on a daily basis, these can be fairly effective at reducing the frequency and severity of the headaches. Often abortive medications will also be prescribed to treat those headaches that still manage to sneak in.

    Yes, some headaches are caused by the lupus, but not all, some are just primary headaches that you get because you are a person who is predisposed to getting headaches. Like I said, I have a good treatment plan, but when I am in a flare, there is nothing that will prevent me from getting daily migraines until my lupus is under control with prednisone. If your lupus is not well controlled then yes, maybe the headaches are from the lupus and maybe the answer is to get the lupus better controlled. That may be a discussion to have with your rheumy. Another thought is maybe the headaches are caused frm one of the meds you are taking to treat your lupus.

    To accept the headaches as part of your lupus and to continue to suffer is not the way to live, your quality of life is affected by daily headaches. I strongly suggest seeing a neurologist get your headaches diagnosed, get the appropriate testing and scans and get on a treatment plan. It has changed my quality of life.

    Keep in mind it sometimes takes time to find the right medications to treat your headaches. You may not see results immediately, it takes patience and a strong desire to get better, plus a good doctor who knows how to treat headaches.

    Good luck and I hope you have some pain-free days in the near future. Lisa
    LilPrego216 responded:
    I am also a sufferer of chronic headaches. Mine almost always go to a migraine if I don't take something immediately. I suffer from occular migraines, so I see an "aura" before mine actually kick into full swing. My Rheumy put me on Elavil, which is a tricyclic antidepressant. It works wonders for me! I also see a Neuro and he follows my migraines. Having a headache everyday, all day is no fun!! Try and get in with a Neuro and see if he/she can't help you!! Good luck!

    rumfar6 responded:
    I have opcipital neralgia ( inflamation in my neck putting pressure on my opcipital nerve cluster). Motrin won't touch it but voltarin or mobic does help. They are both anti-inflamitaries but as my doc says , they pin point better. I don't know if this helps but it might be worth a try.

    Good Luck Marie
    marilynk2 responded:

    I can't believe your rheumy hasn't referred you to a neurologist! You need to see one as there are CNS problems associated with Lupus. I have had major migraines associated with my Lupus and I would be LOST without my wonderful neurologist! He is a crazy man from New Zealand that I wouldn't trade for anyone. When I had to have a spinal tap, I was scared due to a previous experience and I was still waiting for the pain but he was already done!!!! I have relied on this doc for several things and he does not take ANY HEADACHE for granted as does any of his partners. Don't let your rheumy blow it off to Lupus! Look what happened last weekend to Natasha Richardson! What a terrible lost of life for apparently no reason!

    Please, promise us you will get to a neurologist!!!!!


    moejoe6268 responded:
    Hey there, I'm 40 and I was dx with SLE about 3 years ago, and have experienced the same thing you have with the headaches.... as like you Lortab helped me tooo... but your right no one wants to prescribe them long term. I have tried excedrine,tylenol and motrin as well... it helps but not as much...dunno what to tell you kiddo.... it sucks...sometimes I hurt so bad I wanna roll into a ball and cry, but i'm not gonna let it get me down and you shouldn't either. When I get my headaches.... I take a hot shower and let the hot water beat on the back of my head !!! helps somewhat....
    K2isKsquared responded:
    that is the BEST screen name, I Love It!! as for headaches and the shower: I was told my my hairdresser that scalp massage is good therapy for headaches. She has folks that come in JUST FOR A SHAMPOO when the migraines hit.

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