View Full Version : Head troubles

11-10-2013, 09:10 PM
Hi all.
So I have had a TERRIBLE ongoing headache since Friday (the 8th) and it will not go away no matter how much I do. It has led me to having terrible fatigue as well as just not mentally being "there". I am so forgetful now and I have been having trouble talking/forming sentences as well as getting out what I'm trying to say in general.

It's starting to really scare me because when I first got sick back in 2008, it began with me catching a cold (which I just recently got over one), then it led to me being really exhausted all the time (which I have been since Friday) as well as a never ending headache which i have also been experiencing.

I really don't want these to all be signs of my disease beginning to flare up again. I'm stuck in the crossroads because I am away at school until Thanksgiving break which isn't for another two weeks. I have a doctors appointment for when I go home, but what if that is waiting too long? My boyfriend suggested going to the hospital out here by my school, but i've gone there for problems before and they are absolutely terrible. I feel like I knew more about my body/doctor stuff than they did. I don't trust them.

I just don't know what to do. :( Does anyone else have headaches like this? If so, how do you cope? Because i'm out of ideas :/

11-12-2013, 10:16 PM
I don't get headaches like you describe, but I just wanted to stop in and send you well wishes.

11-13-2013, 10:03 AM
I don't get headaches like you describe, but I just wanted to stop in and send you well wishes.

Thank you so much

11-13-2013, 10:59 AM
I've been thinking about your concern with headaches, but also with issues of getting to the doctor.

I have a few questions if you don't mind...

First, you said nothing you've tried works, what have you tried? (as someone very wise on this board often says, we often attribute everything to the lupus, and that may not always be the case. Sometimes a headache is a headache... So maybe I can help with advice?)

My Rhuemy has provided me his cell and also e-mail. I haven't used the cell yet, keeping that sacred and for emergencies. However I will e-mail him questions that pop up in between appointments, even pictures when appropriate and he responds within 24 hours. Is it possible you can do that with your Rhuemy, does he/she have an e-mail? Call their office and see what the doctor recommends about what action you should take.

I also hate my local ER. I've had bad experiences with doctors, and several when I've been to the ER. I find my local Urgent care is better and more reliable. Can you try an urgent care? Take someone with you to your appointment. It really makes a difference in the level of care I get from doctors. I have one whose personality completely changes whether I'm alone or if I bring someone. I've developed quite an anxiety over doctors where I will self-sabotage to get out of the appointment if it's a new doctor. Someone going with me helps keep that in check as well.

I do take Mobic daily, but I'm not thrilled with it (speaking of headache medicine), because while it does prevent me from the majority of headaches I used to get I feel stuck when I do get a headache because I can't take another nsaid. I'll be addressing this with my Rhuemy at my next appointment.

Maybe all this isn't necessary - is your headache gone?

The best advice for most headache situations is to hydrate. Drink water, and then drink more water. But then my Sjogren's zaps my moisture so I'm always dehydrated... I don't think I could drown if I tried.

11-14-2013, 11:31 PM
Hi Ashley,

This isn't what you want to hear, but for me when my headaches started I found out that my lupus went to my central nervous system... I was getting other symptoms as well.

I also have the antiphospholipidnsyndrome and I had become Coumadin resistant so that was also a huge issue perhaps related to the headaches.

However, I also had to add plaquenil and imuran onto my plethora of drugs which may have been a cause of the headaches.... Who knows.

Anyways, I hope I'm not a Debbie downer for you!!

All the best,

11-20-2013, 04:50 AM
Ashley, have you done anything about your headaches? To me what you're describing is neurological and what Heather said seems more than a possibility. Please make an appointment with a neurologist.
Good Thoughts and Hugs