What helps lupus headaches?

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hippimom2
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Date Joined Jul 2005
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   Posted 10/2/2008 5:30 PM (GMT -7)   
I was wondering what those of you who get lupus headaches use to get relief.  I can't remember if I asked a similar question a long time ago.  If I did, I'm sorry for the repeat.
 
I take a low dose of doxepin to help decrease the number of headaches I get and normally it does help.  It doesn't eliminate them totally, but I don't get them as often.  I'm flaring right now though and seem to have worse and more frequent headaches than I usually get when I am flaring.  They are the ones where you feel like your eyes and your head are going to explode and make you sick to your stomach.
 
I have a feeling I probably need to increase my prednisone even more.  I know that Lynnwood and I have both found that increased prednisone can help the headaches.  This week I did go from 7.5mg to 10mg, but I think I might need to go even higher for a little bit.  I'm going to put a call into my rheumy tomorrow.  I have taken some hydrocodone which gives a little relief.  Any other ideas?
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/2/2008 5:45 PM (GMT -7)   

I have no ideas to help you, but am looking forward to hearing what others do to get some relief. Hopefully someone can help us out eh?

 

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/2/2008 6:25 PM (GMT -7)   
Sometimes a quiet, dark, cool room with ice on the forehead, sinuses, and back of the neck helps....not very practical though, when you have children.

So sorry you are flaring again, hippi

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 10/2/2008 6:25 PM (GMT -7)   
Hi Hippi,
 
Yeah, increasing the prednisone helps my headaches too.  I think our headaches are mainly inflammatory in nature. Prednisone seems to kick them pretty well.  For me anyway!
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

34 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, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 10/2/2008 7:59 PM (GMT -7)   
prednisone can help, migraine treatments often help- relpax, immitrex etc, or the following combo- benedryl, compazine, strong anti inflammatory like naproxin sodium. Sorry can't help more than that.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/2/2008 8:30 PM (GMT -7)   
Ummmm . . . orgasm blush

Honestly . . . even if you are so totally NOT in the mood. If your body is able, enlist your hubby . . . Ha haaa . . . . it will be the first time he will appreciate your headaches!!

Sorry, Hippi . . . I despised the person who told me this . . . but I relented in desperation during a really bad migraine and I was absolutely shocked at the relief.

Blessings!

Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/3/2008 5:13 AM (GMT -7)   
oh rosie, my husband was looking over my shoulder when I was reading this.. ooh he's got an evil grin! ;>
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


peacesoul
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Date Joined Jan 2007
Total Posts : 2446
   Posted 10/3/2008 6:42 AM (GMT -7)   
Yep, I was going to say the same thing.
Sex, not that I get it anymore....haha! But when my head used to be about to blow off, I would have sex and the headaches was gone.

Also what helps my headaches is activated charcoal. Seems to mop of the toxins in my gut which often times causes headaches.
The world breaks every one and afterward many are strong in the broken places


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 10/3/2008 6:49 AM (GMT -7)   
My Rheumy has suggested Cymbalta to me.  I've been getting daily headaches for over a month now.  They are always on the left side of my head.  Anyway, anti-d can help.  I'm trying the Cymbalta but I'm getting terrible side effects from it.  I don't know if I can stick with it.....and as luck would have it, I haven't had a headache since starting it.  I hope you find something that works.  It's miserable!

Jeannie 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/3/2008 6:56 AM (GMT -7)   
Thanks for the ideas. Rosie, my hubby will be all for your idea, lol. I ended up with a killer of a headache last night and took 2 hydrocodone and went to my cool, dark, quiet room and did get some relief. I need to start my list of things to talk to my doc about and these headaches will be at the top of my list.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/3/2008 10:45 AM (GMT -7)   
Well, I haven't had a headache since starting the Inderal(blood pressure med), only problem is I had to go off it yeaterday because it dropped my BP too low and I was soooo sleepy abd out of breath with the slightest of movements. PCP wanted me on tablets so I could break them in half, but pharmacy gave me capsules, so I have to get that mess straightened out. Cymbalta didn't do anything for my headaches or my joint pain. My doc said it seems most effective for these symptoms at the 60 mg twice a day dose that you have to work up to. I took it for three months, two at the higher dose with no relief. If it ends up working for you and you don't have insurance, Lily has a program. I was getting a four month supply for free form the manufacturer, but I have absolutely no insurance at all. Luckily the Inderal is much cheaper and hydrocodone is even cheaper then darvocet.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil, Cymbalta, Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Darvocet.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/4/2008 4:06 PM (GMT -7)   
(((( Hippi ))))) so sorry to hear you are flaring. I get bad headaches too, had one frequently for the last couple of weeks. Lortab works well for me but makes me itch so now I am taking Darvocet. I take the meds and lay in a quiet, dark room with a cold washcloth. I hope you find some relief. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 10/4/2008 11:28 PM (GMT -7)   
Hippi I'm sorry you're having such a tough time with this flare. It sounds like it's really sucking your energy. I hope you're able to find some relief. Rosie might be on to somethin'...hmmm reving up your blood circulation, breathing, and hormones for a few minutes to cure a headache might do the trick smilewinkgrin Love, Butterflake
Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien.  multi vit, C, flaxseed oil, acupuncture
Donna
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/5/2008 7:21 AM (GMT -7)   
Thanks everyone. I think I'm starting to do a little better, but am still feeling pretty rough by the afternoon and evening. I am finding that if I take some Excedrin Migraine at the first sign of a headache that it sometimes helps, but if I wait too long, it won't help much.
 
Update from later today.  The excedrin didn't help today.  I'm going to take a hyrdrocodone and crawl into bed and hopefully not vomit.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Post Edited (hippimom2) : 10/5/2008 2:06:18 PM (GMT-6)


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/5/2008 5:43 PM (GMT -7)   
(((((((( Hippie ))))))))))

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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

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