I am newly dx'd and have been reading everything I can get my hands on about this disease. I want to understand it as best I can. This forum is helping me so much, just reading the various postings offers much information.

At this present time, my main symptoms (problems) are tense, achy shoulders and terrible headaches. I've always been the type of person to develope headaches when under stress or tension, but seems like I constantly have one now.

Is this pretty common with lupus? Since I'm beginning methotrexate today (I tried Plaquinel, but broke out in a severe rash), I cannot take pain relievers. Any suggestions on how to deal with these constant headaches (I missed 2 days of work this week)? :eek:

Hi,

I had bad headaches constantly, sometimes for months on end until I was finally put on Prednisone and Plaquenil. It was very odd because my headaches disappeared in a few days. I've since stopped the pred, but i've been on plaquenil 2 yrs and still rarely get headaches like that anymore. I've had alot of other aches that I didnt even realize until I took prednisone. So I'm thinking that lupus can have something to do with the headaches. I'm sure someone more knowlegable will provide some more info, though.

I too had a headache every day for a long time, until I was diagnosed with Lupus and Sjogrens. I take Plaquenil twice a day and after it kicked in, I haven't had a headache since. It took about 4 months for the Plaquenil to kick in. I still have aches, but no head aches.

Hi. Have you asked if there are prescription drugs that can be taken with Methotrexate, since your headaches are so debilitating?

I also had horrible headaches for years, the kind you can't even move, but only about 4 times a year. I took Bellergal for them. Since starting Plaquenil, I haven't had any more. GOOD LUCK! Sympathetically, Vee

I had headaches that would last for 3 or 4 days straight, along with nausea and diareah. When I was diagnosed I was put on prednisone and plaquenil, and the headaches were very few and far between. Every once in a while I will get one and my neurologist prescribed phenergan (to control the nausea and diareah) and Midrin for pain etc.. It makes me sleepy, but it brings relief fairly quickly:) .

I have had migraines since the age of 11, mostly associated with menstration and hormone fluctuations, until about 4 years ago when they changed to daily and with visual changes that went with them. A few months into that, I came down with 3 viruses in one day and do not remember 4 days of my life I was so sick and was acutely (that means like the flu sick) for 3 weeks and then trying to regain strength for 6 weeks. The long/short of it, my health has never been the same, my headache, which a neurologist diagnosed as migraines, are very, very frequent, and I recently had a positive ANA with a detected anti-DNA ds...I also had a high SED rate, so my Internist sent me to a rheumy, which I will see in March (middle to be exact).

All of this to tell you that my neurologist diagnosed me (before lupus was on the horizon) with chronic and hormonal migraines. He told me that all headaches that I had were migraines, even those I thought were tension.

My suggestion is to talk to your doctor about treating these as migraines and either seeing a neurologist or at least experimenting with a conventional treatment like a triptan-class drug and phenergan to help the nausea. I have lived with severe migraines for a long time. I feel your pain and I am sorry for you.

Also, along with lupus sometimes goes muscle spasm and such, so another treatment option you can talk to your doctor about is a muscle relaxer and an NSAID. Sometimes I have to take this combo at night if I am pain in my neck and shoulder area more than normal and my headaches are increased.

Just some suggestions to talk to your doctor about. Good luck and I am sorry about you headaches. Don't give up! These could be related to your lupus. Another option is for some type of physical therapy to keep that area from having so much tension, either chiropractic, massage therapy, acupuncture or classic physical therapy.

It will be more difficult if you can not take any pain medication at all because there is a time and place for them when used properly and regulated between you and your physician. My manifestation of this disease has been so painful, as most-likely many others on this forum, they may have had to resort to it in some form or fashion, but there are alternative methods. There are also a variety of pain meds out there now that are non-narcotic

I don't know if any of this has helped, but lupus causes inflammation and most-likely that may be some it.

I know this is long, but an MRI of that area can tell if there are bulging disks in there. Once I had a +ANA, I begin to read some books and do research and they suggested that you often have mulitple disciplines handling your cases, but your rheumatologist may be willing to look further into the causes of the headaches. I am the type that prefers the fewest doctors.

Good luck and I am so, so sorry you are in so much pain each day. I was put on an antiseizure medication years back and that stopped the severe pain every day, but I do still have frequent headaches.

I am learning that all of us with this diagnosis are on a continual journey to find more ways to improve our quality of life. That is my goal...

I am no doctor, have no medical degree, I can only share my long journey regarding my headaches. Sometimes those tension headaches can be migraines in disguise. I am hopeful that once I get with the rheumy, some of the headaches will go away like those for the previous posters.

Good luck and hang in there!

Diane

Good luck and keep us updated.

Thanks for your answers. I cannot take Plaquenil, as I broke out in an allergic rash (all over) after taking it for 4 days. And my headaches were just as bad the weeks I was on predisone.

I've got a call in to my dr to ask about taking something for the pain/headaches along with the methotrexate.

Headaches have been a big problem for me. They weren't at first but for the last 2 years or so they have been a constant issue. We suspected regular run of the mill migraines at first, then Lupus migraines. We then moved to thinking a side effect of CellCept. After taking me off the CellCept and sending me into the hospital without getting rid of the headaches we moved to a condition called Psuedotumor Cerebri, which I definetly have. This is a condition they don't know the exact cause of but Lupus is one possibility.

After treating the psuedotumor the headaches were still there. Which is pretty much where I am now. I just started on Topamax about a week ago, which is a migraine prevention med. So far I haven't really had any headaches per say. Just a little pressure a few times. We will see....

I did also want to say that I have suspected my Fibromyalgia in a lot of my headaches also. I know that at least some of them are caused when the trigger points in my neck and upper back get bad. I can feel the pain shooting all the way from the trigger point up into my head, not to mention down my arms and legs but that is another post. You might talk to your doc about fibro also.

Headaches are so frustrating and you can get depressed if you are in constant pain...I also take Topamax as a preventative and most of the time it has worked in the last 2 1/2 years I have been on it.

If you can't take many prescription things, I personally added two items naturally that were beginning to help, but I have quit taking them until I see the rheumy. I had started taking a sublingual (under the tongue) form of DHEA and 5 mg of B12 in a tablet that dissolves under my tongue as well. But a side effect I begin to notice was that my level-8 migraines seem to be slightly less along with my hands and joints not hurting as much either.

I went in today to the compounding pharmacy where the tech is that has done a ton of research on inflammatory diseases and autoimmune diseases and asked him why and he said DHEA acts as an anti-inflammatory and steroid and that is what is going on.

In fact, I remember that being one of the first things I read is that DHEA can help. I also added natural progesterone supplement...

All I have found out is that with headaches it takes trial and error. And as far as pain meds go...isn't dexameth a steroid? Not sure why pain meds would interact

I don't know if is okay to mention actual pain medication on this site, so I won't, but I am allergic to all triptan-class drugs (Imitrex, Maxalt,,,) and the ergots cause major rebound headaches, but I have found one that works...and it is not in the opiate category (and not as strong but works wells on tension-type headaces) like the one most people take...that does not help, usually increases headaches..., Midrin did the same thing as the triptan-class drugs...I will just tell you to ask your doctor about a medication that has acetaminophen, caffeine and another ingredient with helps the muscles in the neck relax and helps stop the pain. Since I don't know if it is appropriate to discuss pain meds by name on this forum I won't do so but hopefully that is enough information that he/she will know that I am talking about.

Good luck...and I am sorry if I have crossed any rules...moderators can let me know!. I have just dealt with migraines/tension headaches for so long, I just want to help, because I know how frustrating/depressing it can be!

I am sorry for your pain:wave:

Diane

Mytngenes, Just saw the last post here & was reminded that I also took Fiornal for headaches, in addition to Bellergal. (Not together, of course.) I hope you get relief SOON. Best wishes to you, from Vee

Sorry you are suffering with migraines. Been there....hate it. I was taking Axert, but have now switched to Relpax. I've had migraines for years. Fortunately, they are less frequent. I'm happy about that because now I have "rhupus" to deal with and the thoughts of having migraines that lasted for weeks would put me over the edge. Talk to your doctor and keep trying different meds until you find one that works for you. There is more than one choice out there. Also, a physical therapist can work wonders for a migraine. Also, try heat at the base of your neck or ice, a dark room, no noise, etc. Again, sorry you're going through this. Good luck.