I’ve been suffering from headaches a lot. This morning I woke up at 3:30 in the morning with a severe migraine. My neuro had me tested for everything under the sun. She wants to do a spinal tap to finish ruling things out. She thinks the headaches are all part of this autoimmune disease. She tried me on topamax but it didn’t do anything for the headaches. It just made me more tired.
Do any of you suffer with these headaches? What do you do for them? How is your dr treating them?
I get awful headaches, the ones that feel like they’re in your eyes and ears and all over your head! I really struggle to control mine and get extremely sensitive to light when I have them. Currently I’m not any meds for them, I’ve just been given amatriptaline for sleep and headaches but I just got told it was a tension headache and I needed counselling before so I’m not trusting that diognosis until I see a rhuematologist in a couple of weeks time!
I can’t really offer any advice, wearing my glasses help a little but that may just be me. I do both sympathise and empathise though and wish you all the best! I hope they ease off a little for you x
I take calcium channel blockers to control- works very well
I have horrible headaches and they still have not figured out what’s the cause. I have had 2 spinal taps and both came back good. My doc had me seeing a physical therapist for them and it helped a little would bring my pain from a 10 to a 6/7. I’ve used a tens unit and its helped a little and has allowed me to get my head off the pillow.
I get migraines. When they hit, I take Imitrex. Mine are sometimes accompanied by nausea/vomiting, and when that happens I take Compazine as well.
One thing that has dramatically reduced the frequency and severity of the migraines is taking a nightly dose of amitriptyline. It was prescribed for me to help with sleep, but it also is a known migraine preventative and that has been a welcome side effect for me.
Also, if you google migraine triggers, you can find suggestions for foods, etc., to watch out for and see if they might be a trigger.
My neuro called me back and wants to start me on pamelor as a preventative. Has anyone tried this?
Hi
Just a comment-- I had migranes when I was going thru menopause. I was on amatriptaline for about 3 years. Never had them before or after. and I am "old". Hopefully that is what you are experiencing.
Stay Positive
Cindy
sure most have thought of this but many lupus drugs do have headaches as side effects. Even if not listed, it still could be drugs side effect since many of us with lupus have strange reactions.
My first pain specialist had us take a class about pain including migraines as there were a few women in there who would get them. Hormones can cause migraines and this does not just mean women going through menopause...many women get them with their cycles.
Here is excellent site that has not only excellent information but connects you with links to other specific migraine sites.
http://www.americanmigrainefoundation.org/
I am sorry for your suffering...i do get cluster migraines but luckily only a few times a year at most. I hope all are eventually free of the pain...good news is older you get the less migraines you should get!!
HELLO IT IS ME AGAIN MICKEY:
PLEASE LISTEN WHAT HELPED ME TO PREVENT MIGRAINES. I HAVE NOT HAD A HOT DOG IN OVER 14 YEARS AND NO LUNCH MEATS. THEY HAVE TOO MANY NITRATES THAT CAUSE MIGRAINES ALONG WITH MSG.
BE CAREFUL OF WHAT YOU EAT AND READ THOSE LABELS
BELIEVE ME I HAVE HAD MUCH PAIN WITH MY HEADACHES AND FOUND OUT BY STAYING AWAY FROM CERTAIN FOODS THAT PREVENTED MANY OF MIGRAINES. I PRAY THAT YOU DO NOT SUFFER AS I DID. SOME DOCTORS GIVE A DRUG CALLED CAFFRAGOT==IT IS CAFFIENE AND IT DOES NOT ALWAYS WORK.
COFFEE, SOMETIMES WILL HELP BUT, SOMETIMES TOO MUCH WILL CAUSE A MIRGRAINE!!
PLEASE TAKE CARE AND I HOPE YOU READ, AND TAKE IT TO YOU HEART WHAT I EXPERIENCED.
LOVE AND BLESSINGS MICKEY AND RUSH
I am currently going through a similar situation. I have had migraines off and on for years and only Duradrin AKA Midrin helps. A couple of months ago I started getting a really bad headache in the right side of my head. The top of my head and my temple are very tender and painful. My face hurts on that side, ear pressure, teeth hurt, etc. So, the RN at my primary doctor's office put me on antibiotic for sinusitis for three weeks. Afterwards, I didn't feel much better, so another round of antibiotics. After that round, I wasn't much better. So, I had a CT scan. Didn't show anything in the sinus. On my routine visit to my rheumy earlier this week, I told him what I am going through. His initial response was temporal arteritis, so he did blood work to check on inflammation markers. If they were extremely high, he would have started me on predisone and I would have had to have a biopsy of the temporal artery. Fortunately, they weren't high enough, so he set me up an an ENT for my next step. If the ENT doesn't find anything, he mentioned trying the neurologist. These headaches wake me up and are always there even with meds. I can get them to a dull roar, but I really need to figure out what this is. I hope you find something to help! Hugs
No one shouid suffer from severe headaches. Before menopause I had migraines just before my cycles. However the foods that I avoided were red wine, red meat, msg and anything that said "natural flavoring" (no telling what's in it). This kept my migraines down to a minimum.
The biggie that would cause a slip was that nasty MSG. That stuff is real poison. It was invented in Taiwan and nobody uses it there. It can also be hidden in "natural ingredients" as I've mentioned.
There are autoimmune migraines/headaches. Initially had an MRI which would show any other problems sinus plus other head abnormalities. A sinus infection doesn't always show on an x-ray or CT scan.
One time I aspirated a piece of hamburger and another time some pills (long story). Didn't show on an Xray. However the pulmonologist believed me and did a bronchoscopy and retrieved the hamburger and pills both times. Gosh isn't there a good diagnostician any more these days instead of doing a bazillion tests and being bounced from specialist to specialist.
You have to hold on.
“Lupus headache” is one of the many features of this shape-shifting disease, and it shares many characteristics of a migraine but seems to have a different origin and needs different treatment… It’s usually resistant to most headache treatments, which makes it especially miserable! I was getting them pretty bad last year, but now that the lupus itself is doing much better, I don’t get much more than mild ones.
As far as the spinal tap, she is probably interested to see if it’s a sign of active lupus in your brain… A bad thing to have going on that needs to be stopped quickly. The spinal tap is an ordeal, but the most useful way to gather information about it. I had one almost exactly a year ago and I’m not gonna lie, it was disastrous for me, though it usually isn’t for most people. It can be followed by an intense spinal headache, which requires lying flat on your back for a couple days if it happens. It’s supposed to be much more likely and more severe in young women than other populations. I had a really severe spinal headache layered with really severe lupus and/or migraine headache, plus anxiety and mood dyseegulation all at once. It was like my brain was on fire for a week, and I couldn’t take care of myself but didn’t have someone else to (other than burdening my 8-months pregnant roommate, who did help to some extent, but shouldn’t have been stuck with the caregiver responsibility!) All those things that happened to my brain that week (concentrated versions of what had been building over time till then, other than the spinal headache itself) were very likely part of the neuropsych lupus I seem to have (the tap showed evidence in favor of it, but not super clear, and more telling was that the steroids I started right after helped a ton to get things under control!)
So, if your neurologist feels the need to see one, I’d go for it if everything less invasive has been done. Neuro lupus would be a reason to use heavier lupus drugs (especially cytoxan), but you don’t wanna bring out the big guns unless necessary. It also might help pinpoint a different cause of the headaches… Or it might give you a totally different kind of headache for 2 or 3 days and leave you with no answers and no relief. Unfortunately, you can’t tell ahead of time what it’ll tell you or not, and trying it is a much bigger step than a simple blood draw! But in many ways is small fries compared to toxic drugs that may not be needed or especially letting inflammation wreak havoc on your brain. Early ID leads to way better outcomes!
Best of luck, and talk out your questions, concerns, and alternatives with your doc!
Thank you all so much for your replies. My neuro wants me to see a headache specialist. I do think we will end up doing the spinal tap. She did say that she wanted to check for the inflammation. That if it is caused by the autoimmune disease like Faladora said, no preventative would work. It probably IS a good idea although I am dreaded for all the same reasons above. I’ll try the pamelor and see what happens. I am so sensitive to meds. My rheumy started me on cellcept about a month ago. I emailed him yesterday because I’ve been feeling so horrible. He said to stop the med over the weekend and see how I feel. Well, ps…I feel better today that I didn’t take it. I don’t know what the heck they are going to be able to keep me on. Nothing seems to work, or I react to it. I’m so frustrated.
I took my daughter to the mall tonight. It was hot in there. I turned beat red with “the rash” all over my face, neck and chest. It is so obviously not normal and embarrassing to boot. I just wanna get “fixed” lol.
PLEASE JEN: I WENT TO A NEURO AND HE PUT THE SHOTS IN MY HEAD. BEFORE THAT ASK FOR IMETREX. THAT WILL HELP YOU WITH THE MIGRAINES!!
IT IS MANY FORMS I USE THE NASAL SPRAY.
MANY BLESSINGS
MICKEY AND RUSH
I had tried everything you can think of and reading through this thread i see my migrane journey all over the place.
I went to a doc who gave me emergency botox and it has really helped alot .My insurance did cover it but they make you document all the drugs you have tried that didnt work before approving botox.
Hang in There and just know your not alone.
Hugs,Cheryl
Yes, i get them only when i have sun exposure, even just a little. The only thing that works for me is tramadol and ice packs!
Hi!, I sufferred a long time with terrible headaches before I knew that I have Lupus, which every member on my father side of the family has them ! They use to last for no more than a day or two. But now it is like they stay for 5-8days and really I just stay sleep, cause it seems as though Nothing works! Seriously my doctor has done everything and none of them can pinpoint what is the cause of them -and so am dealing with them with plain aspirin from the dollar store and sleep with no noise!! Sorry that you are going through ths but maybe the brain know something that noone else does??LOL take care and get some rest when this happens…Beverly L.
I get horrible headaches and am currently treating them with a combo of Ibuprofen, norco, lots of water, and rest/quiet. I’ve been on beta blockers but had to stop those when my heart rate dropped too low. My doc will rx migraine meds but you have to take them at the onset of one in order to stop it. The only thing that really works is avoiding foods that trigger it, alcohol, and drinking lots of water. They’re bad though. They knock me flat for at least two days. I hope you find some relief.
I HAVE ASKED YOUR DOCTOR ABOUT IMTREX NASAL SPRAY. IT WORKS 90% OF THE TIME!! I CAN TELL WHEN IT IS COMING SO I CATCH IT BEFORE IT IS FULLY A MIGRAINE. THIS IS A GOOD DRUG FOR MIGRAINES.
ASK, WHAT CAN IT HURT. THEIR IS ALWAYS SOMEONE IN THIS CHAT OR DISCUSSION THAT KNOWS MORE ABOUT EACH THING THAT OCCURS WITH LUPUS. NYSTATIN MOUTH WASH FOR SORES, IT IS BANANA FLAVORED AND IT WORKS. PEOPLE ALSO WITH LUPUS HAVE A LOW GRADE FEVER!!! I HOPE MANY OF YOU READ THIS. DEPRESSION WITHOUT SLEEP, WHAT DID YOU EXPECT. YOUR NOT FEELING PERKY.
BUT WITH ME, IS MY STOMACH PUMP NEEDS TO BE REPLACE WITH THE LINE THAT GOES THREDED UP MY SPINE. IT IS WAY OVERDUE. THEY HAVE A HARD TIME THE LAST TIME AND I HAD 2 MINUTES OF NOT UNDER AND NOT IN THE SURROUNDINGS. I SAW WHITE STEPS AND AT MY RIGHT WAS A WHITE CLOUD.
I WISH THEY WOULD OF LET ME GO. MY BLOOD PRESSURE WAS 240 AND CLIMBING, WITH THE BOTTOM NUMBER BEING 180 AND ALSO CLIMBING. SO, THEY WANT TO TRY AGAIN WITH A NUERO SURGEON.
I AM READY FOR ANY RESULT THAT MAY HAPPEN. I TOLD THEM NO HEROICS JUST LET ME GO. SO BE IT.
THIS IS HELL LIVING ON EARTH!! I KNOW THEIR IS A BEAUTIFUL 36-22-36 BODY UP THOSE STEPS JUST WAITING FOR ME. LOL SO, REMEMBER, DO NOT BE DEPRESSED LIKE ME. I HAVE MS, AND MORE.
NOW THEY CAN DX LUPUS EASY BEFORE WITH ME THEY COULD NOT!!! SO, REMEMBER THEIR IS MUCH MORE AND YOU MAKE THE BEST WITH WHAT YOU HAVE BECAUSE ALL THIS HERE IS TEMPORARY.
GOD IS WAITING FOR THE RIGHT TIME.
SENDING EVERYONE BLESSINGS
MICKEY AND SERVICE DOG RUSH
Hi! The devil that is rmigraines. I take excedrin migraine at the first sign as well as put an ice pack in my neck. I use tiger balm at my temples for nausea. Good luck!