Help with SLE headache

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New Member

Date Joined Jun 2009
Total Posts : 18
   Posted 11/26/2009 11:15 AM (GMT -6)   
My wife has been flaring a lot for 6 months. Her joints are so bad she has had to use a wheelchair on occasion, and recently she has been hospitalized with a bleeding kidney.
But along side of that her head has begun to hurt in a new way. She also has SREAT which is another very serious AI disease but much more rare. SREAT has caused her to have a headache for about 4 years now. Sometimes they are small and can be ignored--starting in the back of the head near the brainstem. As the get worse they move forward. Eventually encompassing the entire head. When the disease it getting very bad--they cause a shooting sensation through the brain or eye. But the normal here is back to front.

Over the last few weeks, since the kidney issue emerged, she says her headaches have changed. Now they start in the front and encompass the whole head rapidly. They are excruciatingly painful for her. She currently spends her time drugged on painkillers and sleeping. We are awaiting the nephrologist and rheumatologist appointment.

Can anyone describe their lupus headaches? Tell me how they start and what they feel like?

Lupus is very new to me and I am trying to get up to speed on it. Thanks

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 11/26/2009 12:52 PM (GMT -6)   
I'm sorry to hear your wife is in so much pain. I'm sure you will get several different answers on this question since we are all different.

My headaches are usually one sided. The whole side of my head will hurt. Even my face, ear and neck. After, my head will be sore to the touch.

Other times the back of my neck will hurt along with the back of my head.

I hope your wife feels better soon. She will be in my thoughts and prayers. Keep us updated and take care.


Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 11/26/2009 3:37 PM (GMT -6)   
Countryboy, I hate to hear that your wife is so ill, and I hope you don't have to wait too long to see the doctors. I don't have lupus headaches unless migraines and ice pick migraines are lupus headaches, but I don't think they are. I hope your wife gets some relief soon. You're doing the right thing by reaching out to try to help her. Take care,

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 11/26/2009 4:06 PM (GMT -6)   
I usually treat my headaches like migraines since they all turn into one if left untreated. SLE headaches tend to respond to the same drugs or prednisone.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Dec 2006
Total Posts : 185
   Posted 11/27/2009 12:20 AM (GMT -6)   
i will step out on a different not the kidneys regulate your blood she monitoring her blood pressure at home? i too have bleeding from my kidneys fro vasculitis and it had increased my blood pressure..just have her monitor her blood pressure at home go and get her a blood pressure machine..not the wirst one either you can get digital ones that go on the arm.. had my dad not given me his blood pressure machine one night i never would hve known that the headache i got was from high blood pressure.. if its high have her get it checked by her doctor and if its too high and she doesnt have Blood pressure pills get her somewhere where thyey can give them to her...

i hope she feels better soon and your a great husband to find out so much about this...

my Blood pressure headaches are in my forehead top of my head and base of my neck and no meds will reallly curb the headache until my BP comes down
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg

New Member

Date Joined Jun 2009
Total Posts : 18
   Posted 11/27/2009 9:20 AM (GMT -6)   
Thank you all for your help. I am very new to understanding lupus as I have been spending most of my time on SREAT over the last few years.
Any help to get me up to speed will be appreciated.

Amy thanks for the BP advice. As it turns out, that has indeed been a serious problem recently. When I took her to the hospital a couple of weeks ago her BP ws 180/120. I know the adrenal glands are located on top of the kidneys and that they help regulate the blood pressure. But since she has been on such high doses of prednisone for the past 4 years, I thought that they were pretty well suppressed but I am not sure. So I have wondered if the extreme pain raised the blood pressure or if the blood pressure caused the pain. It may be a chicken and egg kind of thing but for some reason it feels important to me.
But I do think you are very right. I do monitor her blood pressure very regularly to try and stay on top of it. Currently she is completing a 24 hr urine test and she goes in for an MRI in a couple of hours. Maybe that will help us start to get on top of this mess we are currently in. So far all I know is that she is throwing of some protein.

Keep filling me in on what I kneed to learn. Thanks
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