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    Old 08-03-2006, 10:18 PM   #1
    Kimberlyn7
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    Question Lupus Headaches???

    Hi all. I am wondering who knows about lupus headaches. I have suffered my entire life with migraines, regular headaches, and tension headaches. My earliest remembrance of a migraine was between the ages of 2-3yrs old. Very sad, and I think I only remember it because my mom kept trying to get me to eat, and I was so sick to my stomach and my head was pounding. I remember where I was sitting, what I saw, etc. I remember her yelling at me too. God, it's terrible about her, but I'm over her, and need to know a little more about these "lupus headaches". If anyone knows anything, please reply, thanks! ~ Kim
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    Old 08-03-2006, 11:05 PM   #2
    VeeJ
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    Re: Lupus Headaches???

    Kimberlyn, I started having migraine (or cluster?) headaches in my late 20's. Wasn't Dx'ed with lupus until age 47-1/2. Prior to Dx, I was given Bellergal for the headaches, which helped---but I still lost work days & leisure time. Since being Dx'ed, starting Plaquenil, and avoiding sun, I've haven't had a single headache of that magnitude.

    Also, antiphospholipid syndrome can bring on headaches; it's seen in a fair number of lupus sufferers. (See the "sticky post" at top of thread list.)

    Best wishes, Vee (commiserating, too)

     
    Old 08-04-2006, 04:54 AM   #3
    Kimberlyn7
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    Re: Lupus Headaches???

    Quote:
    Originally Posted by VeeJ
    Kimberlyn, I started having migraine (or cluster?) headaches in my late 20's. Wasn't Dx'ed with lupus until age 47-1/2. Prior to Dx, I was given Bellergal for the headaches, which helped---but I still lost work days & leisure time. Since being Dx'ed, starting Plaquenil, and avoiding sun, I've haven't had a single headache of that magnitude.

    Also, antiphospholipid syndrome can bring on headaches; it's seen in a fair number of lupus sufferers. (See the "sticky post" at top of thread list.)

    Best wishes, Vee (commiserating, too)
    Thanks for the info. I've had migraines since I was a child. My first remembrance of one was between the age of 2-3. I wouldn't get them very often, but through my adolescence, I would get them in the summer a lot from the sun and or heat. My mother never took me to the doc's. Unfortunatley she wasn't a very sympathetic mom. Now she is, that I'm older, 35. I would get them in school, come home, go to my room, shut all the shades so the room would be very dark, my own breathing sound would make my head pound, and my mother would always come in the room, flick on the light and basically in a loud voice ask me what I was doing. I tried forever to explain these to her. But no doctor until I was in my teens and I could go myself. When I was around the age of 9 or 10, I had bruises that would never go away, and if they did, it took forever. I remember hearing my father arguing with my mother about taking me to the doctor's for this. Come to find out, they thought she was beating me..lol. Which she wasn't, but I was diagnosed with ITP (Idiopathic Thrombocytopenia). They started me on prednisone and I blew up like a balloon. I remember my mother complaining about how much I was eating all the time. But luckily for me, the ITP was cured with the prednisone and I didn't have to have my spleen taken out. They had to take bone marrow from my hip though, and they did that through my back. Talk about pain!! So a few different doctor's that I've had over the years tell me that the lupus may have come from that illness. But I don't know what to think about that. So I suffer from headaches almost everyday, whether it's a regular, tension, migraine, or just plain old pain. So that's why I asked the question thinking that maybe "lupus headaches" were something different. I just started on Neurontin, and I'm really hoping that this drug will work for the headaches as well as other generalized pain. I'm also on Elavil 100mg, but my neurologist will start to ween me off of that if the Neurontin works. Another strange thing is that my body reacts very different on meds. Like they work the opposite of what they are supposed to do. Does that sound rediculous? I've been on prednisone now for almost 2 years and can't gain an ounce. I was on 15mg, which helped tremendously with pericarditis and my arthritis, and my fingers not opening sometimes, my knees, etc. I also have osteopenia (pre-osteoporosis) so I need to come off of it. Now that I'm weening off of it, I am starting to gain weight, very slowly of course...lol. My body is just a pain in the butt! I just want a cure, and or a new body on the inside~ Thanks for your help~ Kimberly
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    Old 08-04-2006, 05:59 AM   #4
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    Re: Lupus Headaches???

    I have terrible headaches, they last about 3 days 2 nights on average. I have been having them for about 10 yrs.. I was dxd with sle in Mar. 06. My rhuemie says they can be related to lupus, so now I have an appt with a neurologist to find out for sure what is going on. In the meantime, my pcp has given me morphine injections, toradol injections, imitrex and zomig tablets. For me, the imitrex seems to work just a little better than the zomig, and has less side effects. I can't take ibuprofen or asprin (severe diareah), and tylenol, vicodin, oxycodone, have no effect on these headaches.The toradol didn't help with the headache painwise, but, ironically it made my costochondritis, and sore joints feel better. After I see the neurologist I will try to make another post with more info. I do not have Ro or Hughes syndrome. I do have Raynauds, which makes me think it could be blood vessel/vasculitis related.

     
    Old 08-05-2006, 05:39 AM   #5
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    Re: Lupus Headaches???

    Quote:
    Originally Posted by realisticchic
    I have terrible headaches, they last about 3 days 2 nights on average. I have been having them for about 10 yrs.. I was dxd with sle in Mar. 06. My rhuemie says they can be related to lupus, so now I have an appt with a neurologist to find out for sure what is going on. In the meantime, my pcp has given me morphine injections, toradol injections, imitrex and zomig tablets. For me, the imitrex seems to work just a little better than the zomig, and has less side effects. I can't take ibuprofen or asprin (severe diareah), and tylenol, vicodin, oxycodone, have no effect on these headaches.The toradol didn't help with the headache painwise, but, ironically it made my costochondritis, and sore joints feel better. After I see the neurologist I will try to make another post with more info. I do not have Ro or Hughes syndrome. I do have Raynauds, which makes me think it could be blood vessel/vasculitis related.

    Hi! I was told by a neurologist long ago, when I lived in Florida that Zomig and Imitrex don't normally work in patients with lupus. This was after a trial of trying Imitrex when nothing else was working. I have had toradol for pericarditis. In the pill form. They worked for the pericarditis for a long time, then they stopped, and now have to visit the ER when I get pericarditis to ger a shot into the muscles of toradol. It does do wonders on inflammation, and the joints especially. I take a preventative med called elavil, but it really doesn't do a thing. I'm all the way up to 100mg for a long time now. I was just prescribed last week Neurontin, to see if that will decrease the amount of headaches I get, and I was told it helps with pain for people with Fibromyalgia and Lupus, and other illnesses as well. I'm really hoping this works! I take Fioricet now for my headaches, and my body is of course becoming immune to it. So I normally have to take more than prescribed to get the headaches/migraines down to a "dull" headache that is bearable. I hope you have some good luck with your neurologist, and look forward to hearing back from you. I don't know if my headaches are related to the lupus or not, seeing I've had them my whole life, but they are worse since I was diagnosed with Lupus in 1997. Again, good luck and keep us posted! Thanks for your input~ Kimberly
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    Old 08-05-2006, 05:42 AM   #6
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    Question Re: Lupus Headaches???

    Sorry, But what is Raynauds? What are the symptoms, etc. I've heard many people with Lupus that have this....
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    Old 08-05-2006, 06:28 AM   #7
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    Re: Lupus Headaches???

    Raynauds, from what I've been told is a condition where inflamation of the blood vessels in the hands and feet mainly, spasm and cause pain and coldness. What it does to me: I'm of medium complexion, however the skin on my hands and feet turns very white and my nails turn a purplish blue color. My hands and feet are always cold except in a hot shower, that is the only time where they feel "normal". It hurts really bad in the winter especially, I try to cope by wearing nail polish, gloves, 2 pr. of thick socks. As for the imitrex not working on people with lupus in general, I don't know; it does work for me and I definitely have lupus. I'm not exactly sure how the drug effects the brain. I have read that people with raynauds are likely to get migraines due to inflammation of the blood vessels in the brain. This is why I think it might be the cause of my headaches.

     
    Old 08-06-2006, 03:51 PM   #8
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    Re: Lupus Headaches???

    I also have the horrible headaches. I was also prescribed the imitrex. I thought they were just headaches, but it had occurred to me that my lupus might be involved. I have them at least 5 times a week.

     
    Old 08-18-2006, 11:36 PM   #9
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    Re: Lupus Headaches???

    The general drugs used for migraines did nothing for me. My family doctor finally tried Inderal (propranolol is the generic), which is a Beta Blocker. Within a month all my migraines went away! It's been nearly 3 years now!
    Trudi (MI)

     
    Old 08-19-2006, 10:59 AM   #10
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    Re: Lupus Headaches???

    Quote:
    Originally Posted by realisticchic
    What it does to me: I'm of medium complexion, however the skin on my hands and feet turns very white and my nails turn a purplish blue color. My hands and feet are always cold except in a hot shower, that is the only time where they feel "normal". It hurts really bad in the winter especially, I try to cope by wearing nail polish, gloves, 2 pr. of thick socks.
    I was wondering do you have scalp problems too, when my vessels constrict I swear , I can feel each strand of my hair on my body, I just become ultra sensitive, my hands shake... so I don't do my nails as much, sometimes I wear compression gloves and thick socks too. I also wear a beret alot. stepping out the shower is like stepping into the arctic, even if I have the heater on. And if its too hot, I break out in hives My headaches as for the original post, I have had since 3rd grade, only thing that ever worked was oxygen, dolobid, or midrin, I was given them for a concussion I had in High School. The oxygen didn't make it go away but relaxed me to get some ease with the medication. I really have not found anything that made me pain free.
    Felicia

     
    Old 08-19-2006, 05:25 PM   #11
    realisticchic
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    Re: Lupus Headaches???

    I have a sort of prickly feeling on my scalp, it makes brushing a bit uncomfortable. I always worry that maybe it means my hair is going to just fall out all at once . I too hate leaving the nice warm shower, in addition to the heater I sometimes put my towels in the dryer for a while first, then when I get out they are warmer. I have tremors in my hands, but I'm not sure what is causing them. I am hopeful the neurologist will figure it out. I am a huge fan of hoodie sweatshirts in the winter, I figure as long as I don't wear sunglasses with them I won't look too una-bomber like!

     
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