New Member - Lupus Headaches - Please help!

mandy w said...
Hi there...this is my first post. I was "unofficially" diagnosed with lupus four years ago. I have a neg. ANA but have the malar rash, EXTREME photosensetivity, joint inflamation, pleurasy, chronic migraines, night sweats, swolen glands (I actually had a lymph node biopsy b/c they originally thought I might have lymphoma), nasal and mouth ulsers (almost constantly), multiple tendonitis and bursas, irritable bowel syndrome and horrible fatigue. My rheumy treats me for the symptoms of lupus but my medical record says I have arthroalghias. To top it off, I was diagnosed with degenerative disk disease last year which wouldn't normally be a major issue but the lupus has inflamed the faced joints in the degenerating disks. When I get facet injections to help with the pain I have worse pain for a week b/c my lupus adversely reacts to the intrusion of the injection. My latest problem is CONSTANT migraines. My neuro and I are trying everything under the sun to figure out a solution, but lupus migraines are usually pretty hard to solve...go figure. When I want to feel sorry for myself, which I really try hard not to do, I start to think this disease is the work of the devil.

I am 31 years old, married and the mother of an eight year old daughter who is the center of my world. She is suffering horribly because she feels like she needs to take care of me, even thought I work so hard keep her from seeing my pain. I have a pill box the size of a photo box. I take prednisone, plaquinel, neurontin, lexapro, topamax, tramadol, nortriptlyline, miralax, and vicodin when needed.

Thanks for listening...just needed to vent. My mom had RA and she and I usually vent to each other but sometimes I feel bad using her as a sounding board for my crap b/c I think deep inside she feels guilty b/c her side of the family may have given me the lupus. She's the best thing in the world and I'd take her pain away from her in a second and she'd do the same for me...and unfortunately neither of us can do a darn thing for the other.

Hi Mandy.

I cant begin to tell you how our situations parallel one another.  Welcome to the forum, and feel the huge hug I am sending your way! 

My mother is also my best friend and she has RA, severe osteoporosis, and gastroparesis to the point she cannot eat solid food without her stomach going into severe and painful spasms.  I have a brother who is terminally ill with kidney disease, and another brother who was accidentally shot last year and almost lost his leg.  It makes you wonder why God allows so much for one family... especially a family who loves Him so much and tries to do the right thing.  But it also makes you wonder why the devil is so hard after us, obviously we are making a difference for God, or he wouldnt care so much.

Be careful with the Topamax.  It did help with the migraines, but it was a very dangerous drug for me and gave me liver damage, and several neurological symptoms that I did not have before.  That was five years ago, and I still have not recovered from that.

I will be praying for you!!

Blessings,

Thanks guys...for the welcoming words and warm feelings. Maybe it will just help to feel a little less alone. Reading your posts this past week has made me feel "unalone" for the first time in a long time. Even though I am surrounded by people who love me, no one knows the pain we suffer and no one can appreciate what it means for us to make it through a full day of work, school, parenting, etc. and not collapse. Every once in a while I'll have a REALLY good day and I'll think "WOW! If I were like this everyday I'd be able to run the world!!"

Thanks again everybody!!

Hi Mandy,

Welcome. I have had migraines since I was 7 years old. After I had my children, they became less frequent altho they did not go away. I never took anything to prevent or abort them (those drugs weren't around when my headaches were super active). I was on topomax for seizures that began when I was 48 or 49 (can't remember) and the headaches remained severe and frequent. I didn't suffer any side effects from the topamax and it was at a much higher dose than normally given for migraine control. My neurologist then added verapamil (titrating the dose until it helped) and my headaches were gone!

I see a different neuro now due to insurance coverage. He decided to get me off of topamax to see if it improved my cognitive abilities. I knew it hadn't but evidently he has to see for himself. (the creep!) Of course my migraines are back; the are lasting for days at atime now with varying intensities during those days. When I called the neuro, he said to increase my neurontin by 300mg per day. It has helped but not like the topamax. But again, the key to the topamax control was the addition of verapamil.

By the way, my seizures and migraines along with many other symptoms led to the diagnosis of Hashimoto's encephalopathy. If you google it, you find that it's very rare. I feel fortunate that my first neuro who diagnosed me was well acquainted with it and had treated it previously. (He was at a major teaching hospital that is very well regarded.) He was also an "expert" on migraines.

Sorry this is so long. I hope that my experience can help you. Good luck! I know how horrible these headaches can be.

emmie

Hi Mandy. I wanted to add my welcome to the other warm welcomes you have gotten. This is a great site and you are right that coming here helps you feel less alone. It really helps to be among people who can really relate to what you are going through. Take care and I'm glad you joined us.