Lupus Headaches :(

General
1

Hi Everyone :)

This is my first post on here and I just have to ask to get a feel if anyone experiences these insane, crippling, debilitating headaches! I get Lupus Headaches every other day for about 90% of my day, its the worst pain I've ever experienced in my life! It makes the pain of my tattoos look like a baby! Majority of the time I wake up with them and they get worse as the day goes on. I find myself taking Motrin 800MG ALOT just to get a small relief! Sometimes I feel like I'm being shot repeatedly in the back of my head! Is this normal or something I need to bring up with my specialist on Thursday? Any feedback or advice would be lovely :)

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Lupus headaches are awful!! I was on a preventative med for years. It did help ease the frequency of them. Now I am able to tell when they are coming and stop them. I have discovered what caused them and am able to avoid them for the most part. Definitely talk to your doctor about them.

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Hi Mari :)

thanks for responding ! What kind of medicine were you on for them? I can never tell when they are coming until I wake up :( My mom is afraid of my kidneys blowing up from all the Ibuprofen I take , and I'm going to talk to my doctor about alternative meds! Thanks! :D

-Rachel-

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I am dealing with that right now, and it is probably the worst symptom of all, because it is both pain, fatigue, and mental unclarity all rolled into one.

I have two types of bad headaches. One is like a bad bad tension-type headache. That is usually mitigated or alleviated by Fioricet, narcotics, nsaids, etc. I have these very, very frequently, multiple times per day

The other type I get are frankly almost indescribable. They come on suddenly, like a ton of bricks. The first time I got this type of headache I literally turned around thinking someone hit me as hard as they could in the back of the head with a hammer! I have light sensitivity, lightheadedness--as in, if I stand up, I feel like I will pass out for about 2 minutes before I get my bearings back. I never have actually passed out, although I usually feel like I am going to. If I turn my head to the side, or look straight down with my chin tucked to my chest, I will get weird pins/needly sensations which can trigger onset or make worse. Absolutely NOTHING helps these. Not fioricet, not nsaids, not narcotics, not any of the off-label meds they said might help... Fortunately I don't get these as often as the other type, but still get them WAY too frequently, like 5x week or so.

Are you taking prednisone? I could seem to link the really bad headaches to prednisone. When I increased or decreased my pred I would be much more likely to have these, or if the prednisone dose was starting to wear off and I didn't take another dose exactly on time, it would almost always trigger. Of course, there are many other times i get them where there is no obvious prednisone trigger, but boy, I knew if I screwed around with the pred I would for sure get them.

I have tried fioricet (can be VERY helpful for tension type), perocet (can be very helpful for tension type, marginally helpful for bad type), iv morphine in hospital (not helpful for either type), dilatizem which is helpful for raynauds symptoms and heartrate issues and is supposed to be helpful for headaches and the verdict is still out on it. They are considering maybe trying amitriptaline, which is normally used for antidepressant. I was actually prescribed that a long time ago for off-label use for interstitial cystistis pain, and it made me feel sleepy and hungover all the time.

The other thing, that seems weird but is worth noting, is that I am prescribed adderall, and sometimes like on the weekend or day off work I will not take it in the morning. HUGE mistake. I will not be able to get out of bed all day if I don't take it and will have a headache for sure. But on the other hand, if I am working hard on a project or something and I take more than I usually take (but still within my allowed prescription dose) it can trigger a headache

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wonderfulworld said:

I am dealing with that right now, and it is probably the worst symptom of all, because it is both pain, fatigue, and mental unclarity all rolled into one.

I have two types of bad headaches. One is like a bad bad tension-type headache. That is usually mitigated or alleviated by Fioricet, narcotics, nsaids, etc. I have these very, very frequently, multiple times per day

The other type I get are frankly almost indescribable. They come on suddenly, like a ton of bricks. The first time I got this type of headache I literally turned around thinking someone hit me as hard as they could in the back of the head with a hammer! I have light sensitivity, lightheadedness--as in, if I stand up, I feel like I will pass out for about 2 minutes before I get my bearings back. I never have actually passed out, although I usually feel like I am going to. If I turn my head to the side, or look straight down with my chin tucked to my chest, I will get weird pins/needly sensations which can trigger onset or make worse. Absolutely NOTHING helps these. Not fioricet, not nsaids, not narcotics, not any of the off-label meds they said might help... Fortunately I don't get these as often as the other type, but still get them WAY too frequently, like 5x week or so.

Are you taking prednisone? I could seem to link the really bad headaches to prednisone. When I increased or decreased my pred I would be much more likely to have these, or if the prednisone dose was starting to wear off and I didn't take another dose exactly on time, it would almost always trigger. Of course, there are many other times i get them where there is no obvious prednisone trigger, but boy, I knew if I screwed around with the pred I would for sure get them.

I have tried fioricet (can be VERY helpful for tension type), perocet (can be very helpful for tension type, marginally helpful for bad type), iv morphine in hospital (not helpful for either type), dilatizem which is helpful for raynauds symptoms and heartrate issues and is supposed to be helpful for headaches and the verdict is still out on it. They are considering maybe trying amitriptaline, which is normally used for antidepressant. I was actually prescribed that a long time ago for off-label use for interstitial cystistis pain, and it made me feel sleepy and hungover all the time.

The other thing, that seems weird but is worth noting, is that I am prescribed adderall, and sometimes like on the weekend or day off work I will not take it in the morning. HUGE mistake. I will not be able to get out of bed all day if I don't take it and will have a headache for sure. But on the other hand, if I am working hard on a project or something and I take more than I usually take (but still within my allowed prescription dose) it can trigger a headache

Wow wonderful word! Thank you for all your advice!! The 2nd headache your describing is exactly what I have 5-7x out of the week!!!! I become very pale (almost death looking) my eyes get dark circles and I feel like I'm about to die a slow death from this headache! I take Motrin 800MG almost everyday which I know isn't good, narcotics like Vicodin don't help either! These headaches take up 90% of day and I can't even get up to shower! I'm literally paralyzed with pain! Speaking of Prednisone, I just started a low dose regimen at the beginning of this month (2.5MG) it made me sick immediately and hasn't given me any relief at all! I took myself off it earlier this week and go back to my Lupus doctor on Thurday. Prednisone has done nothing for me but made me sicker and hasn't given me any kind of relief. Plaquenil is an option for me next but I heard it can take awhile to work. I'm so sick now that it doesn't even matter! I feel like your describing me and you don't even know me, thank you sooo MUCH!! -Rachel-

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Yeah the prednisone can be some crazy stuff. I had surge of the terrible types of headaches when they initially put me on it, but they had me on 60 MG!! for a long time. For the first 3 weeks I was on it, it was fantastic, I thought it was a miracle drug I had so much energy it was almost like manic energy and I lost like 13 pounds in a week, insane. THEN...all the bad symptoms hit. I got the worst most painful acne all over my face and body. The skin all over my body got ridiculously paper skin and fragile and my upper arms and the fatty sides on my hips look like a wild animal ravaged me there are so many deep purple stretch marks. It caused pred induced diabetes, I gained a million pounds, and my mood swings made PMS look like Mother Teresa. The other thing was she had me take them in three 20 mg dosages, and if i would be out and it was time to take another dose, and I didn't have my meds with me, I would go into would I can only imagine it feels like to go through "withdrawal" lol. It has taken me a year and a half to taper down to 10 mg.

the side effects on the tapers are terrible. when i tapered from 20 to 10, i had the bad headache for about a week without let up. i just kept taking whatever sleepy medicine i could in an attempt to sleep because it was the only way i could even bear it.

my pcp wants to send me to a headache person. My rheumy keeps telling me she thinks its a migraine (which, im not so sure) but PCP told me that he didnt think it was a migraine, or at best it was a very atypical migraine

already had like 20 million mris and ct scans over scan of several years so i know it is not like a brain tumor or aneuryism or anything like that. they suggested maybe adding a preventative, but then they said with the laundry list of meds I already take there is a big risk of drug interactions. Gee, you think?

7

I get the tension-sinus headaches. It pretty much stays with me all the time. I used to get severe sinus infections when I was younger, now just the headaches.

8

Ugh. I had those headaches. My doctor put me on Elavil and it helped prevent them. Definitely talk to your doctor about other drug/treatment possibilities because Motrin can wreak havoc on your organs. Putting an ice pack on my head, sitting in silence, and being in the dark helped relieve some of the pain.

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are you sure you guys arent having migraines, what you are experiencing sounds like cluster migraines to me, i have those, look it up on the internet, everything you described above i have and then some and i have clusters, it is terrible and they need to be treated differently - just wondering, thx

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I get extreme headaches for about a week before going into a bad flare. Miagrane medicines reduce the pain for about 24 hours then the headache comes right back. My doctor said migraine meds often help with “lupus” headaches.

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Your best bet is to see a doctor that specialises in headaches There are many drugs that are more effective and no won't interact with your medications. Elavil, taken at night to prevent side effects, works for many people I take Verapamil, a calcium channel blocker, to prevent Other drugs to prevent can be topamax, and inderal and there are a slew of meds to abort a headache when it starts. Why continue with HAs when they can be eliminated or at least controlled?? Good luck!

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When I was first diagnosed I think I lived in the dark for about six months with terrible, terrible migraines. Please mention this to your doctor. There were many different meds out at that time but one came out finally that really agreed with my system and worked too! It is called MAXALT and if I feel a migraine coming on I just put it under my tongue and fall asleep and the world looks a little brighter. I sure hope you get rid of those awful things very soon.

Take care,

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I had horrible headaches for a long time and some of them were the really bad Like ones that you describe. One of them landed me in the ER it was so bad. Well, that was how I was diagnosed with Antiphopolipid syndrome and TIA’s. they Did put me on a headache preventative (topamax) which has helped plus aspirin plus plaquenil. I only have 2-3 headaches a month now. Please go get checked out. And go see a neurologist, he’s the one that treats my headaches!

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Sun exposue does it to me every time! Excedrin works ok and ice paks on my head, face and neck.

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Yes the last month has been insane and they last about 3-4 days. It is hard to get relief I just try to be aa still as possible. I have been trying to pinpoint the triggers and so far it serms to be the sun. I am fighting one right now so I Will be going hat shopping

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I’ve had a headache for a week now. Nothing seems to work. Worse at night. No sun exposure. Never had headaches like this

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Yes! I get these! I have had migraines for 32 years! They are usually on one side or the other of my head. They throb like crazy. I am sensitive to light and sound and get nauseated and vomit sometimes. They are awful! I take Relpax for my migraines and sometimes hydrocodone if my jaw joint is the culprit ( I have severe TMJ and have had one joint totally replaced by metal).

Then there is what I call my Lupus migraine. This is all the above PLUS my entire brain feels like it is on fire! It is soooo miserable and almost indescribable! The worst part about these is not much helps. I have to go to the ER and get IV Toridol (it’s anti-inflamatory) and steroids and Benadryl. It’s the only thing that helps! They tried migraine meds, IV Morphine, and other major pain meds NONE of them worked! It’s because it’s inflammation of the brain or lining of it! It is very hard to treat.

You will definitely have to talk to your rheumy and neurologist about it! They are really tricky so you need to see a specialist who knows about headaches. You need to double check that your doctors are knowledgeable and specialize in headaches.

I hope you get some relief soon! -Tina

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I to have had these since march every day. Debilitating. I’ve been off work since January! And I can’t get in to see my neurologist till aug 8th!!! My bp has been 168/98 and rising, halo vision, vomiting, dizziness, and other neurological problems with it. I went to my primary cause I. Knew I needed help and couldn’t wait that long. Since going on prednizone I’ve gained 50 lbs in the last 5 years. So I asked my primary if maybe raising the blood pressure medicine which they were using as a maintanence medicine to adjust to my new weight might help. We did and bingo! The migraines are 90% better. I never had high blood pressure b4 when I started getting the migraines. But when I get them my blood pressure strikes thru the roof. I take topamax and verapamil for everyday maintanence and toridal, nucynta, and fioricet for my lupus migraine flares.

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I hope you can find a good neurologist that can help you! I am discovering it takes a team of doctors and making them work together to get the treatment you need. I had a huge break thru a couple weeks ago that has changed my life off our lupus web site! I don’t even remember who posted it. But it was a website to get more educational information about cns, pns, and ans and through it I stumbled onto a clinic that is treating the damage done to my pns from my lupus to help me walk better again! It is giving me my life back! So hang in there. There is hope! You just gotta find the right combination of everything that works for you. And the awesome fellow lupies on this website offer a wealth of knowledge, support and big shoulders for venting and crying and hugs to share when you have break throughs and joyous moments! One baby step at a time! It’s gonna be okay. Your’e not alone. There are other people here going thru the same things u r and we get it and were here for u!

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You can also take ground up cayenne pepper and water dip a q-tip in it and wipe the inside of your nostrils with it. It will sting a little at first, but has natural capsasian (? Probably not spelled correctly) and that is a natural pain killer. It will work wonders for your migraine and doesn’t do ny damage to your liver. At the same time massage your temples and bottoms of your feet with a few drops of real essestial lavender oil (found at any health food store) mixed with olive or sunflower oil. Lavender oil naturally lowers blood pressure. You can also sprinkle a few drops of this oil on your bed linens and rest while your having a migraine. Cayenne pepper mixed with olive oil is also good used a rub for specific areas of pain. I put it on my temples during the really bad migraines. Hope you find the relief you need soon.