View Full Version : Does anyone else get headaches?

10-19-2008, 11:14 AM
Just read a post about headaches. She thinks its caused by her new dose on her meds. I, too, take plaquenil (been on it for over 2 years). I take my usual dose of 2 pills with breakfast. Never really noticed any side efffects from it.

On my bad days, I get an unexplainable random headache (feels like a migraine) which usually affects the left side of my head and sometimes the back of my head close to the neck. It then causes a chain reaction of pain, which then continues in my neck and mostly my upper back area. Sometimes sleeping it off doesnt help and it may drag on for a couple days later.

A friend told me to make a diary of times when these headaches occur. List the foods I ate that day, whether I was stressed out, etc... Thought it was chocolate, but havent had any today, and Im having one of those headaches right now.

It can't be my meds because Ive been on plaquenil for over 2 years, and been weaning down on my CellCept, thanks to my awesome test results. 2 more days and Ill be totally off it. :D Less meds in my body the better...

So does anyone else get these kinds of headaches? :?

Sorry for the long post... :(

10-19-2008, 11:24 AM
Hi Budd,
I read your post here and yes I get these headaches big time. I have had a headache since Friday that has finally let up on me some. I think that the sun causes them with me as I am very sensitive to the sun. I went to the Honeybee Festival a week ago on Saturday and I believe the exposure to the sun set me up for the headache and this flare that I am now in. My joints all hurt bad right now. I am wondering if you are getting the headaches from the sun due to the UV Rays and have you been around florescent lighting lately. I am just wondering is all. Please post and let us know what you think.


10-19-2008, 11:39 AM
Hmmm, I did some errands yesterday during the day, but really didnt spend much time in the sun. Just getting in and out of the car between store trips. I know for a fact during the summer when Im out in the sun for a long time, I do get wiped out, exhausted especially the next day.

I took a short walk in the park early this morning to get my body moving. Been lazy and sluggish, thought a little exercise would wake me up. But after that walk, my headache got worst and my back is now aching. :cry: Now my neck/upper back pain has spread to my chest/shoulder (front of my body). Gosh, I think I need a warm bath or a nice massage. It didnt help that it was breezy with a cold chill in the air. My ears were so cold I thought that caused my pain to worsen.

Just frustrated and want to know why I get these aches and pains.

10-19-2008, 12:06 PM
Hi ya buddha,

Just for the heck of it....as you already take both pills at breaky...ask your doc if you can switch to taking both before bed time with a single severing of yogart? (flavored if ya like...I like ACTIVA! cause it has extra fiber in it :D )

Just give it a shot and see if it helps the headaches. I rarely get headaches now that I switched the times I take the plaquenil, unless the goofs at work get to me...then my eye starts jumping and that vein in my forehead starts to pop...and people start running cause...der she bloooows. jk, but they do make my eye twitch lol

10-19-2008, 04:24 PM
My headaches are less frequent lately - but oh lordy I know what you mean! I always say that I can feel every crevice of my cranium when they hit - always one side only, usually the right for me.

I can't blame the sun (HATLADY going out in too much sun!? No way!) but stress, lack of sleep seem to play a role with me. I haven't seen a food connection. In fact for me, if the headache goes on for too many hours, I'll often give in and take Excedrin Migraine AND a cup of coffee. The combination seems to help. OFten the "shadow" of the headache will continue for a day or two.

Quiet, sometimes an ice pack on my head, and just relaxing or meditating seems to finally do the trick.

Hugs - I hope yours goes away soon!

10-19-2008, 04:56 PM
:sleeping: Feeling a little better since I last posted. Took a little nap. Had a hard time finding a comfy position. Lying on my back or my side just made my head and neck ache, so I rolled over on my belly and fell asleep that way. It put less pressure on my head and back.

Still have a small dull headache but its better than before.

These headaches are frustrating. Once one comes along, my entire day is shot. All I want to do is lay in bed in the dark. :( Wish I knew what triggers them to come... So I can prevent the next one.

10-20-2008, 09:05 AM
I too have those massive headaches, which I call my "lupus headache". I work under flourescent lights and computers and I thought I was just doing too much, but it happens over the weekend too. I thought I was just crazy. But I just have to let it run its course. it hurts like a migraine but it dont make me sick, it just hurts really bad. i feel your pain, but I know I use a heating pad on the back of my neck when it goes there, and it eases it, but it dont take it away. Good luck! :B-fly:

10-20-2008, 09:25 AM
Hi Buddhabelly,
I am glad that you are feeling better. I hope your headache goes away completly.


10-20-2008, 12:24 PM
Glad you are feeling better. I think mine get worse in the sun. Also the fact that I dont sleep the 23 hours that my body wants me to cause headaches. I do get migraines but these hungry, sleepy, sunny headaches are different. Its like a baby's cry, figure out what it means and give it what it needs. Right now I think my heads telling me get off that internet and go to sleep.

10-20-2008, 12:47 PM
The next day... :( Still not feeling 100% The pain is down a notch, just feels like its lingering, more of a dull pain. Not a surprise because every time I have those headaches, it tends to stick around 2-3 days. Wish it would totally go away. These headaches seem to suck up all my energy. There goes another uneventful day. :(

Thank goodness I took a couple work days off this week. Need to hibernate. :sleeping:

Thanks everyone for your replies. Its reassuring to know that someone else feels how I feel. :wink:

10-21-2008, 03:26 PM
i have been getting these headaches recently that you talk about. its all on my left side. radiates down the left side of my neck to the spine, and some towards my left arm. the er doc told me it was neuropathy because i also have numbness and tingling on my face with it.

10-21-2008, 04:45 PM
Hi starrval!

Ive never had to go to the ER before. The last time I had a horrible headache, I could not sleep at all. My head hurt so bad. It started after dinner @ 8ish. The pain was on the left side of my head, then it spread to the back of my head to my neck, upperback, down my shoulder, arm. I just couldnt find a comfortable position to sleep. So I woke up my boyfriend who was sleeping soundly next to me @5am, telling him my head hurts so much. He saw that I was crying, and he stayed up until I fell asleep. He's been so understanding and supportive. I only slept for a couple of hours that night. Headache went from a 10 to a 6, so it was slightly better.

Neuropathy?? :?: How long have you been feeling the numbness on your face? If my pain travels down into my arm, do you think Im having some sort of neuropathy problem? :?

10-21-2008, 07:21 PM
i dont think yours would be neuropathy, because it is mainly numbness and pins and needles feeling. i do think it has something to do with nerve damage or aggravation....like a pinched nerve that causes migraines...if you do ever get numbness and tingling though, i would suggest seeing a doc right away like i did....hope u get better! hope we all do!

10-22-2008, 12:37 PM
I also get headaches, in the temple area and all along the left side of my face, back of my head and down the left side of my body aches. My RD thinks is lupus related...a form of vasculitis. I have to say I feel a bit relieved reading about how common headaches are and yet you're all still here to talk about it. I worry about having a stroke, blindness or any of the other scary things I read about. I guess those problems are not too common.

10-22-2008, 06:22 PM
--starrval-- No I havent had the feeling of numbness or tingles. My arm just feels very achey, almost like a sore feeling. :( My headache that day was the worst Ive ever felt. I laid awake all night, wishing I would fall asleep, so I can sleep through the awful pain. I've never had pain travelling down my neck, back, and arm before. And so odd how whenever I do have my horrible headaches, why is it always on my left side? :?

--Jesse-- I, too, have crazy worried thoughts that run through my mind when I have those awful headaches. It hurts so much that I do feel like my head's going to explode. I sometimes think is there really something going on inside there? Your MD thinks its a form of vasculitis? Really? I need to do more research on that.

10-23-2008, 11:09 AM
budd: Yes, he thinks it's vasculitis because I've had high ANCA numbers which indicates vasculitis. It may not be the same for you. Before it worries you too much, talk to your doctor and see if you can get more answers. It helps to keep the runaway thoughts from taking over.

BTW, I think we're going to get rain here in NC (yay!) because my left sided pain has been worse, especially today. Who needs a weatherman!

10-23-2008, 05:49 PM
I can so vouch for that! :o I feel like Im more accurate than the weather channel. I can tell when rain is coming probably 1-2 days in advance. First the fatigue and aches kick in, then that horrible headache comes around. :( I hate it! I always feel miserable when its cold and wet outside.

I work as a therapist in an outpatient clinic, and I hear all the time from the patients, during the dreary rainy days, "Im feeling awful today. Is it cause of the weather?" Im complaining and agreeing along with them. :puppydogeyes:

10-28-2008, 05:02 PM
:cry: Had a trying weekend. The weather changed to cold and rainy friday to saturday night. I predicted a headache to come. And it never fails, it did. Felt sluggish and tired when I woke up saturday AM. The cold wet weather didnt help either. Neck pain, back pain, headache. :( Did a lot of walking at the mall that night and sat through a movie. On top of all that, my knees and hips were aching and stiff. My foot even fell asleep.

You know what else flares me up, causes my headaches, PMS! Errrr. :crazyeyes:

10-29-2008, 06:36 AM
Yes, many women complain that their symptoms are worse around the time of their periods. It varies from month to month for me, I don't know why, but I sure do understand what you're talking about.

11-02-2008, 06:27 PM
:( (Big sigh) :(

Gosh, it feels like I post up all the time, talking about my headaches. I've been dragging all weekend, but managed to get some things done around the house. Then it hit me this afternoon. My usual headache :arrow: neckache :arrow: upperback ache. :( I'm going to bed early tonight, need to prepare myself for work in the AM, working my 12 hrs.

Always wondered, whenever I get these aches and pains, am I having a flare?

I'm just so tired of being tired. These pains and headaches have become a part of my life. Ive gotten used to it, but I wish one day, a cure will be found, and it'll just all go away. :(

11-03-2008, 07:38 AM
buddhabelly, you're singing my song. I've added an earache to the mix now and it's not getting any better. Don't worry about posting about your pain and frustration. We understand, and if it makes you feel even a little bit better, then go for it. Post, post, post.

My heart truly goes out to those of you who are dealing with this disease while having young families and/or jobs. Being retired has made it somewhat easier for me to cope and I can imagine how much harder it is when you have other responsibilities to deal with as well. Hugs to all of you.