I can definitely sympathize with you!! A few months into getting sick I began getting daily headaches along with strange seizure like episodes. Saw a neurologist and had a battery of tests, he is actually the one who discovered the MCTD serology (ANA and RNP) through all the bloodwork he did and sent me to a Rheumy. The Rheumy said the headaches and the neuro symptoms could be from MCTD, it would be a lupus like symptom but usually something would have shown on an MRI with symptoms as severe as I was having. But since the Neurologist found nothing else it was still possible for it to be inflammation in the brain from MCTD. He said a good way to find out would be a trial of prednisone. Well the trial was inconclusive as I felt better for a while but then the headaches and other symptoms came back again. he sent me to Cleveland Clinic for a 2nd opinion. The Cleveland Clinic Rheumy said also it is possible for my symptoms to be from MCTD but it would be uncommon. The nervous system complication most associated with MCTD and Scleroderma would be Trigeminal Neuralgia which presents as extremely severe stabbing nerve pain in the face. But he suggested another way to tell if the CNS symptoms were from the MCTD would be a spinal tap. Well the headaches and other symptoms subsided so we never went with the spinal tap. In the last few days my headaches have returned and the other symptoms have begun a little and I can't help feeling nervous that it is all coming back again and so far no test has figured out conclusively what is wrong. Not sure if a spinal tap will show anything either. Well, I just thought I would share my experience with you in case it helps. Yes, headaches can come from MCTD but to track it down for sure is very difficult. Headaches can come from so many things. #1 cause of headaches is dehydration so make sure you are drinking enough water. Are you on any meds? I'm sorry you are dealing with this as I know it can be very difficult and my prayers and hopes are with you that you can feel better soon!---Climber

I have had migraines most of my life, but a few years ago, I had developed a headache every single day. I went to the family guy who said I should see my dentist. Went to the dentist- could not find anything. Went to the rheumy who said i should see an ear, nose and throat specialist. He x rayed my sinuses and found nothing wrong-said to go to the dentist. Went back to the family doc who sent me to a neurologist. He had me stand on one foot and touch my nose and said he could find nothing wrong. So, by this time, I had a headache every day for about a year. I asked every Dr if my meds could cause this and every one said no. One day I was watching TV and a commercial came on for Nexium- the purple pill. Main side effect was headache. I stopped it and went on Pepcid. The headaches went away in about 2 days- the stomach problems came back! LOL! I went on Prevacid for my tummy. I rarely have a headache anymore. Past menepause, the migraines pretty much went away.
Another aside to this, I had some headaches while taking prilosec for my stomach. The Dr said it was similar to Nexium and had the same side effects.
So, Look at your meds. Hope this helps.
Mary Ann

Anyone know if Plaqenil can cause headaches? Since I started that a few weeks ago I'm on the lookout for side effects. I am noticing loose stools(sorry to be so graphic), which is very strange for me since I am the opposite with slow motility, I'm almost sure it is the Plaq. Well at least I can lay off the laxatives for a while. But my headaches have just started back again so I was wondering about the Plaq. I doubt that's it since symptoms are just like I had months ago, way before any Plaq, but?? Anyone get headaches from Plaquenil. --- thanks, Climber

I get headaches too. About a year before my son was born, I started getting horrible stabbing pains in my forehead. Doc made me go do a sleep study, which was horrible, but found nothing wrong. Diagnosed as ice pick headaches. He put me on gabapentin, and the headaches went away. Got pregnant and went off the meds. Headaches are coming back now, but they aren't everyday anymore. I have a feeling they will start every day again. I also have silent migranes and regular migranes. I have some pills for that, but I can't remember what they are at the moment. I asked my old rheumy about headaches and he said that headaches are not a symptom of mctd. But, I did some research myself and there is a thing known as lupus headaches, so I don't understand how they couldn't be a part of mctd. I believe that all of my headaches are because of the mctd. I'm glad you brought this up, I have an appt tomorrow with my rheumy and hopefully I will remember to ask her about it. Climber, mild headaches are a side effect of plaquenil...and diarhhea is too.
-Kate

thank you all of your comments were very helpful. I was very ill about month ago with pneumonia and they even thought i hav viral meningitis because i started getting those headaches and the just never went away... i get thm everyday I am on plaquenil, celebrex, wellbutrin, zantac and vit d, v-b12. The dr told me to take alprozalam(xanax) and it helps so i take half tab and 2 tylenol and ,y headahces are gone... Butnthen they come back. I am freaked out about taking that xanax but it helps but i do not want to get addicted to it. ALso i have taken so much tyenol i am afraid of damaging my organs... It is crazy. Well they are sending me for another barium swallow and EGD well see ....
I love this support group it is the hardest thing i have ever been through and it helps to talk to others. At least the pleuris is goe now...Gosh I feel 80

So, I asked my rheumy about headaches and she said that yes, they can be a part of the disease, but since there are so many different types of headaches and so many things that cause headaches they usually refer people to go to their pcps or other doctors to find out the causes. She said that they usually respond to regular medicine so it's easier for them and for us to deal with our regular doctors for them...hope that makes sense!
-Kate

Yay, the limit for Tylenol for long term use is two grams a day, or eight tablets. If you drink, even in moderation, cut that in half, and try to skip some days. I wouldn't worry too much about the Xanax, but that's me. The book says benzos have this terrible addiction profile, but a pharmacist will tell you lots of people are on low doses for years without any problem so long as they don't increase. The biggest problem is retrograde amnesia-- and it's definitely an issue when you have brain fog.

thank you all for being so helpful its nice (that sounds kinda weird saying) when people know and understand what your going through.
Update My headaches are better but its weird I feel like it ache in the back of my skull and i can hear like engine/buzzing noises. went to ENT he said everything is fine ... So frusterating. I am just wondering if i have some kinda neuro involvment. my neck gets so stiff and just weird feeling like i get dizzy, tingly feeling.......

I had lots of headaches with MCTD, and they where very much like what you are describing I think they call them Lupus Headaches.

I started getting migraines a few years ago, right around when we figure the MCTD starting kicking in but I just didn't know it yet. Now I get them once or twice a month and take Imitrex when I get them. Nothing else works. Hope yours are getting better!