View Full Version : The longest headache ever and it's getting me down

01-23-2013, 08:19 PM
I have Sjogrens and take MTX injection, plaquenil and preds 5mg and although my saliva and dryness has improved greatly on the MTX, my hair is still falling out (was prior to mtx) and now for the past month on/off I have had a headache that doesnt respond to normal medication.

I have had my blood test - but what I want to know is can you get headaches with Sjogrens? This is a weird kind of headache that hurts when I cough or bend down or sneeze or even sit up for too long. I am seeing a physio today for it to check for trigger points and stuff.

I am also so exhausted, I wake up and struggle to get out of bed and have short bursts of energy but then need to lie down and am in bed early every night now and it's annoying because I dont want to be.

I know the MTX is working but I also know its being challenged as my lungs still feel a bit dry and if I get sun exposure, my joints swell up.

Do any of you get headaches, if they are not migraines, what could they be?

Sorry for the whinge, it's just I was so excited about the MTX helping with dryness and pain and stuff and now this little gem gets thrown at me.

01-23-2013, 09:44 PM
I was on MTX for about 6 months and it gave me a dull costant headache for the whole time I was on it.

I was put on cellcept as the mtx wasn't working as intended and the headaches subsided.

01-24-2013, 01:40 AM
yes i also have a constant headache.
in my case, i have had all sorts of machines wired up to me.
(for other issues as well)
they believe in my case it is from my muscles in my head being inflamed from my lupus and or fibro.

this is why i carry on so much about inflamed muscles....
i have problems all over my body that i know is from inflamed muscles.

i take slow release "panadoel osteo"
this takes he edge off.
it takes a couple of days for the buildup into your body, but then it works .

01-24-2013, 06:06 AM
Hi Corella,

Are your headaches a constant dull pain, or are they a suddenly sharp or intense pain that comes on quickly?

01-24-2013, 08:41 AM
If the headaches are where you are describing and hurt when you bend,sit,lean or lie down cough,sneeze you might want to be checked for a sinus infection if you have not already been or rechecked if you were early on and it has continued.

I have a Sjogrens overlap and my sinuses give me fits literally.They will cause headaches that once they are full and cannot drain and start to get infected will stay constant.No headache meds will work.An aspirin will help with the sinus swelling (I have no idea why this was recommended by my rheumy and he is old school and it works)but if its an infection you need antibiotics.

Sinus issue and infections are common in Sjogrens because of the lack of mucous production and moisture in the nose and sinus doesnt allow for proper lubrication which allows problems to arise quicker.

There are 4 different sinus cavities and more than one at a time can be infected/full.

There is the Maxillary which is the largest and it is around your cheekbone area.
There is the Frontal in the low center of the forehead-this and the Maxillary are my worst ones it feels like brain matter and throbbing when you bend and the Frontal is the one with the issue.
There is the Ethmoid it is between eyes at the base of the bridge of the nose.
There is the Sphenoid in bones behind nasal cavity.

I currently have said sinus infection it is evidently located in the Ethmoid and Sphenoid region as I feel like I have been punched in my nose every time I touch it.It is miserable.I have went to bed every night with stopped up ears and a rice bag I have had in the freezer lying on my face.

Use a saline mist to cleanse them out,use a humidifier or if you dont have one put water in a stove pot and let it boil to put moisture in the air.Use the heat as little as you can as it will dry you out more.Take warm showers to help it drain and stay hydrated.

I would recommend a dr call as if you have progressed to the headache stage and OTC isnt relieving then you most likely need an antibiotic.

Hope you feel better soon its miserable and I am in the same row boat as you-just floating along as I seem to have dropped my oars :)

Be well.

01-24-2013, 02:27 PM
Is the headache one sided?

01-24-2013, 07:28 PM
Thanks everyone for replying. I have the sharp pain in the head occasionally but these ones have been at the front/back and in my neck and interestingly enough, I went for a trigger point massage yesterday who said my neck/shoulders had the biggest knots she had felt in a while and she was surprised I was able to go to work.

It was a painful hours worth of massage and she said the fibro points on my lower back were very bad as well and she did a sterling job on my head and I didnt even need painkillers last night. However I probably should have taken them as my joints are bad this morning.

But I am going to keep up with the head/neck/back/shoulder massages as they really did help.

And today is methotrexate day - what a treat (not!), about an hour after the injection I have this uncontrollable yawning and an urge to sleep and tomorrow we have an important appointment that cannot be got out of so it will be exhaustion city.

Thanks again, I cant wait to have that next massage.

01-24-2013, 07:39 PM
Please make sure that your massage therapist is NOT doing a typical/normal massage but one for an immunesuppressed person.

It is imperative that we not have a regular massage as that is meant to STIMULATE the immune system and the process will break down body toxins and flood your system(which is why they recommend lots of water to help flush it out)Stimulating the immune system while chemically suppressing can cause you alot of issue disease activity wise.

Just wanted to put that out there for others if you already knew-just make sure that your therapist is trained and knowledgeable in the immune suppressed massage and if not can recommend you to one who is.There is tons of info on the massage therapists website about this if you would like to read further.

Tomorrow is my MTX day but I get to skip a week as I am antibiotic eating right now :) so I get a reprieve.

Be well!