I have been having a headache for a couple of weeks now. I was just diagnosed with Lupus on April 6th, however it came as no shock as I had some blood work indication almost a year ago now and my father has it, so it was of now surprise to me. I have had some headaches for a couple weeks now, but it's hard to differentiate what was my sinus infection until now. It feels like nothing I have ever felt before. My eyes hurt so bad that it is hard for me to function at work as I am a secretary, so staring at a screen is getting harder and my temples feel like they will explode. Excedrin only seems to dull the pain. I have looked up Lupus headaches, but they don't really describe what they feel like. Does anyone else have these aches?
Welcome Jennifer! Are you taking any medication for lupus? If you just started Plaquenil it will take a few months to really feel a difference. Your headaches sound like my sinus headaches, but you said they were different. I do get many headaches and I can't wear my contacts very long like I used too. Have you told your doctor about the headaches and your eyes? That would be a good idea. Keep us posted!
Hi! Thank you for your response! I just started the generic of the same drug Monday so I know it’s going to take time. Plus my rheumatologist is easing me onto it. I told her about the headaches but she attributed it to my sinuses but I’ve never felt pain in my temples so bad! So I was just curious what the sites described as a lupus headache. So I I’ll see what the meds bring for relief eventually
Hi Jennifer. I get the same headaches. I have some circulation issues, so I've been attributing the headaches to that. I take Midrin for mine. It is a prescription migraine med. It usually does the trick. I also notice that I have them when I'm hurting all over. Flare? no clue.
I have intracranial hypertension (was diagnosed with this 4.5 years before my lupus diagnosis was confirmed)… I saw several different Drs for 9 months that kept telling me I had sinus infections. It felt different to me too. Have you noticed any vision changes? Hearing any “whooshing” type noises in your ear? I was told intracranial hypertension can happen with lupus patients. It’s worth looking into.
I get headaches like that when I’m fighting sinus stuff and when I overdo it I tend to just close my eyes and rest to try and get rid of them. I only use any sort of pain relief meds for things that cause so much pain that I can’t go on because I want them to work for as long as possible
It's relieving (for a lack of a better word because I would was us all to feel better) that other people are having headaches too, too much time on Webmd scares me into thinking it's something else! Tawny, it's weird that you mention that because I wear classes, and yesterday sitting at my desk at work, I took my glasses off and it actually helped my headache! Today is the first day that I have felt "ok" in about two months. I do think at one point I had a sinus infection and then it didn't feel like that anymore, and I have moved in the last week, so I'm sure that I have over done it and run my body down.
Thank you all for the responses! It's nice to be on here, because I swear sometimes I feel crazy :)
Just wanted to say hi: I have seizure type headaches that come on with extreme strrss, exertion and cold, my mother had raynauds and shogrens, which can cause headaches with lupus. Allergies now are bad so I rely on doling out benedryl / pepcide a.d. and I find that helps my sinuses, head, stomach, but that’s me. It’s a constant mental gymnastics to keep on the sunny side. Linda
Thank you for sharing Linda! I didn't think about allergies causing some of it too! I was just telling my co-worker that it took me four days to get in the groove of working and then it's Friday! Kind of a catch 22!
Hi Jennifer!! Welcome!! I finally got a diagnosis of Connective Tissue Disease this past Wednesday. Like you I was not surprised, I have been begging Doctors to listen to me for years!! I have been on generic Plaquenil for a yer and it took about 31/2 to 4 months for me to see any relief so hang in there help is coming. However, I do still get awful headaches, I have terrible allergies and issues with my neck from a severe auto-semi wreck 9 1/2 years ago. I don’t know what causes my headaches but they are horrible!! The temple pain you describe is what I get also, I feel like I could put my fingers right thru my temples into my brain and that helps!! I got a book from Amazon called “the Lupus Encyclopedia” and it’s wonderful full of great info. It might be worth the investment for great info!! I use ice packs on my eyes a lot and try to rest my eyes throughout the day. I also take Goodies Headache Powders (it’s a old med) but works really well for me. Hope this helps!!
Hello Jennifer, welcome to the group of Lupies;). Like you I just joined and was just recently diagnosed with Lupus in Febuary of this year. Myself have really bad headaches as well, remember Lupus does attacks the brain also, but they have me taking prednisone and Plaquenil, and getting ready to start me on Imuran. The headaches are terrible, I take aleve or ibuprofen and it eases a little enough to make it bearable. Other than that I am sending prayers your way and welcolm to the group, I love it and everyone is so supportive;)
it does sound like sinus, i have had lupus for 20yrs......my father also had it, i have never associated headaches with the lupus though, but with lupus anything is possible......god bless you dear....catspaw1955
Hi…I am in the process of being diagnosed as well. I have UCTD as of now. My blood work is starting to point to Lupus. I also get bad headaches and feel you should look into this…my rheumy has told me there have been links between pseudotumor cerebri and lupus. I was diagnosed in Jan of 2014 and since starting diamox the headaches have stopped. They were undescribable and the pain was horrible.
Hi… I been diagnosed with lupus since 2009… I also have bad head aches… but remember that being on steroids makes our sensitivity to the sun even worse. Even cause excrusiating head aches lasting days… even weeks… wear sun glasses and hats in the sun.
Thank you all for all the advice. The last couple days have been alot better…but I’ve been eating clean again for the last week. Hoping some diet regulations can help! Just looking for some energy for my wedding next Saturday :S
Congrats on your upcomming wedding. I am sure that you will be so excited and happy that you will feel great for your wedding. Your doing the right thing by reeling in your diet and eating clean. I hope you have a wonderful day. Best wishes.
Congratulations Jennifer! How exciting and I know you will be too excited to think about the pain. The endorphins help with that!! Have a beautiful day and enjoy every minute!!
Hi n welcome to the Family! Sorry that you are having this issue. But this is something that you are going to experience n more. Lupus is such a HARD time of not knowing what to expect. Yes , I , myself still have this from time to time, but I just shut down for a while, quite time N away from Everybody n everything. Let your doctor know that you are having this problem. We are here for you at anytime, just login and type. Take care n talk with you. …Beverly M
Thank you all!! Hopefully I can suck it up, woke up this morning with terrible headache again and soooo tired. Hoping I can suck it up by Saturday for the wedding :) But my rheumatologist started me off with taking one pill of the generic Plaquenil and wants me to bump it up to two pills, so two 200 mg doses...if anyone else takes this dosage do you take it at the same time or in the morning and then at night. I asked my pharmacist, who just looked at me and told me at once, but I was just curious. Hope everyone is having a great Monday!!
I take one in the am and one in the pm. You should split them up. Try to get a lot of rest if possible between now and Saturday! Have a wonderful wedding!!
