Anybody else experience Lupus Headaches?

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Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 10/12/2007 6:28 AM (GMT -7)   
I was diagnosed with Lupus in July. I've had a history of migraines for about ten years. My migraine meds always took care of them. Recently, however, I am experiencing these RIDICULOUS headaches. They are in my temple and down the back of my neck. I instigated a really bad flare the end of September by being in the sun all day (didn’t realize I was THAT sensitive – even with sunblock). Anyway, I had the mother of all headaches. Took a variety of meds (almost to the point of overdosing) and nothing touched it. Started doing some research on this site and happened upon something called a Lupus headache. It mimics a migraine – except none of the “usual” things help it – only prednisone. Called the rheum and he upped my prednisone from 10mg to 15mg / day. So – last Friday-Sunday, I could feel the headache way in the background – but nothing like it was. Monday & Tuesday of this week, no headache. By Wednesday evening, I could feel it starting…had it all day yesterday. Took migraine meds – just in case – didn’t touch it. Today is Friday and it is still here. Called the rheum again and he “wants me to see my GP about my headaches” So – he won’t up my prednisone again. Can a rheum really not know about lupus headaches? I understand there are a lot of side effects with prednisone – but the headaches are so bad I could put a bullet in my head.

I’m trying to figure out what the trigger is. Monday evening I only got 5 hours of sleep because my father-in-law was taken to the ER. So – might be lack of sleep, might be stress. Don’t know.

I’m REALLY angry at the rheum right now.

Does anybody else get these? If so – what helped you?

Thanks…
SLE:  07/07, Irritable Bowel Syndrome, migraines
800 mg. plaquenil, 10 mg. prednisone, 2400 mg. ibuprofin, asacol, caltrate-D, wellbutrin, paxil 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/12/2007 7:00 AM (GMT -7)   
Hi Dakota. I'm sorry to hear about your headaches and that not much is helping. I get the lupus headaches too, and like you I've found that an increase in prednisone helps to keep them at bay. Unfortunately I do think there might be some rheumies who don't know a lot about lupus headaches. I have a great rheumy, but when I called about headaches, he told me to see my GP, just like yours did. Maybe it's something they don't deal with very much. Does he know that the first increase in prednisone helped your headaches?

The other thing that helps some with my headaches is to take some narcotic pain meds right when I start feeling one coming on. I have some hydrocodone for when my lupus pain gets really bad and I have found they help some with the headaches too.

I didn't know much about lupus headaches until I found this site and this is the place I learned about prednisone helping the headaches, thanks to Lynnwood who is one of the other moderators here.

Hopefully some other people here will have some other ideas for you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 10/12/2007 8:26 AM (GMT -7)   
Yup, my extremely good rhuemy increased my prednisone from 10mg to 15mg when I started in with the headaches. They were initially terribly intense and made me furious at everyone and everything. I felt like spontaneous combustion WAS a very real possibility.

Mine seemed to coincide with stress, and were often present when I was particularly exasperated or angry with the situation or the stupid choices people were making that caused the situation. I think recognizing how the situations affected my headaches helped a lot letting me control myself and prevent letting those situations aggravate me quite so much. Without the prednisone, I don't think I could have stepped back enough to see what situations/feelings were feeding the headaches.

I still get the headaches, as sometimes overstress just isn't avoidable, but they aren't nearly as intense, and I can manage without increasing my prednisone. (After 6-8 mths at 15mg I've been able to go back down to 10mg.) Instead, I take ibuprofen and an anti-anxiety med that keeps them bearable -- they are nowhere near as intense, but still last 2-3 days. They aren't every other day anymore, but more like once a month. I think being alert to what pushes my particular stress buttons is a HUGE help, and that I'd still be on higher prednisone w/out having learned that particular piece of the puzzle.

Learning our personal limits is difficult, but pays off significantly!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 10/12/2007 9:42 PM (GMT -7)   

Well - at least I know I'm not alone.

I did go to the GP this morning and he upped my prednisone from 15 mg to 30 mg for two days, then 25 mg for four days, then 20 mg for four days.   The headache has seemed to let up - I can still feel it in the background - but I think it will go away once I get the prednisone in my system.

Apparently, lupus is a patience building test...and I'm not passing.  lol

 


SLE:  07/07, Irritable Bowel Syndrome, migraines
800 mg. plaquenil, 10 mg. prednisone, 2400 mg. ibuprofin, asacol, caltrate-D, wellbutrin, paxil 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/13/2007 5:41 AM (GMT -7)   
Sorry about the headaches Dakota . . . glad your doc could help you out.

I had regular, intense (not debilitating) headaches regularly from pre-teen through around age 45 (I'm almost 55 now). They did turn into the occasional EXTREME debilitating variety. I identified at least one of my triggers for the larger type. . . chlorine!! The headaches stopped, completely, either my age (hormones) or because I began maintenance anti-inflams for me every changing pain issues . . . then we discovered most everything was auto-immune.

Has yoru doc checked you for APS (anti-phospholipid) and Anti-cardiolipid antibodies??? This can cause thick, sticky blood which can cause several issues . . . strokes, miscarriage, heart valve issues ect. It is treated with blood thinners.

I would think that because the prednisone is helping, you are having vascular headaches which *could* be caused by the thick blood. Just a teeny tiny thought.

Keep us posted how you make out with the extra pred over a period of time.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/13/2007 9:05 AM (GMT -7)   
Hi Dakota,
 
I completely understand your headache woes. One thing to remember is that headaches can be the result of so many other issues, other than the lupus itself. Rosie brought up a good point with the APS.  If your blood is too thick, that will cause those intense headaches.  I have APS and that is one of my "red flags" that my blood has gotten too thick, bad headaches.  Another cause of our headaches is vasculitis, inflammation of the blood vessels.  Yes, additional prednisone is the only thing that will help those types of headaches, but there are other causes where additional prednisone won't help, so that is probably why your rheumy wanted to hold off on raising your dose.  He wants to know exactly what is causing your headaches before he starts treatment. 
 
We have to be SO careful when it comes to playing with our meds.  Prednisone is a "big gun", and needs care and discernment when taking it.  I know you're mad at your rheumy, but give him a chance to make a proper diagnosis.  He's doing the best thing for you in the long run by making sure you're not misdiagnosed. 
 
You're right, lupus is a patience testing disease.  It's hard isn't it!  You're doing great, and I know you'll "pass" the patience test, lol!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 10/13/2007 1:46 PM (GMT -7)   
Well, I think I forgot to say my rheumy did do a couple of MRI's (with & without contrast) before deciding to try a prednisone increase for my headaches. He didn't just blatantly say 'lets try more pred", he checked out the labs & Head scans before suggesting we try a little pred.

If this is a test for patience, what is the prize if we win?? That's MY big question???

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/13/2007 9:07 PM (GMT -7)   
Perseverance . . . *smiling*

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/14/2007 8:27 AM (GMT -7)   
Amazing strength and courage, to get us through more of life's challenges! :-)
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/14/2007 8:31 AM (GMT -7)   
I had always understood that lupus headaches were vascular headaches. I was having migraines a while back that my pcp treated with migraine medicine and they cleared up. My rheumy confirmed that lupus headaches are vascular. Strange how we get different answers from different doctors. Whatever they are, they sure are debilitating.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 10/14/2007 2:43 PM (GMT -7)   
I actually read about the APS and am going to ask the rheumy when I have my appointment on the 18th.  Until then - I think I'll depend on the prednisone to keep my sanity.  I know the prednisone is a "big gun" and am being cautious with it. 
 
The thing that irritates me is that he didn't say - well, let's get {insert test name here} and then decide on meds - he just blew me off...and he DOESN'T get to do that.  He ticked off the good humor man.
 
The one thing I'm learning is that he might be the expert on the meds - but I'm the expert on me.
 
Ginny - that Phillipians verse is my favorite!
 
Blessings...
 
 
SLE:  07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 10 mg. prednisone, 2400 mg. ibuprofin, asacol, caltrate-D, wellbutrin, paxil 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/14/2007 3:16 PM (GMT -7)   
Hey Dakota,
 
Yes, he shouldn't have blown you off.  NOT good.  I don't think anyone, even the specialists, understand the immense pain and discomfort we all have to live with every day.  If he had chronic, debilitating headaches, he certainly wouldn't accept being blown off by his doctor would he!  NOOOOOOOO.  I hope your next appointment goes better. 
 
I have found out through trial and error that being able to talk "doctor talk" really gets me a long way.  The more I know about my disease, the more I information I can get out of the doctor and I actually get more respect for some reason.  It took me about 5 years to get to the place where I could talk like they do!  My most recent trip to the ER in July was an eye opener for my dad.... I was behind the curtain with the ER doctor and were talking "shop".  My dad asked my mom who else was in the room with me and this doctor.  My mom laughed and said it was me who was talking.  My dad was floored!  He had never heard me talk with a doctor before, and he couldn't believe I knew so much!  I thought that was kind of neat. :-)
 
So, that's just one piece of advice you can take, or not!  Knowledge is power with this illness, and its host of additional disorders. 
 
You nailed it.  You are the expert on you.  You know your body better than anyone.  You know when something is wrong and when it's okay.  It's amazing how in touch we become with ourselves isn't it!  So keep on doing what you're doing.  If you can research some tests in regards to headaches, etc, that might help you get somewhere faster.  Just a thought!
 
Blessings to you too Dakota.  Keep that Phillipians verse close! LOL!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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