Lupus headaches...what helps?

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hippimom2
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Date Joined Jul 2005
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   Posted 3/21/2007 4:51 PM (GMT -7)   
Thankfully I seem to be pretty much done with the flu and the nasty flare I had afterwards, so I am very greatful for that.  However, I can't get rid of these terrible headaches.  I get them daily and they are almost unbearable at times and other times they are just very annoying.  I used to get these headaches a lot before starting prednisone, but prednisone took care of them for the most part until now.
 
The headaches are mostly on the front of my head and hurt into my eyes so that it feels like my eyes are going to explode.  Sometimes when the headaches get really bad, they hurt into my nose and down into my teeth.  These aren't sinus headaches at all - I've had those before.
 
If I take hydrocodone, it helps a little, but I like to use it sparingly since I only have so much of it left.  I've also tried excedrin which also helps a little, but I think I read there can be a reaction between prednisone and aspirin and excedrin has a little aspirin in it.  I just wondered of anyone has used anything or tried anything that has helped make their headaches go away.  Thank you.
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 3/21/2007 5:11 PM (GMT -7)   
(((( Hippi ))))) I am sorry you are having headaches, they are so painful. A couple of weeks ago I had one just about every day. I don't know is mine are due to lupus or full blown migraines, I'm not sure if there is a difference, ya know? Since I am on NSAIDS I cannot take Excedrin, advil, etc so I have to suffer through them. Try a cold compress (the cold constricts the blood vessels), it works well. Most of the time I do that in a dark quiet room and sleep.

I hope you feel better soon! Hugs and love
Stacie

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

DX: Hashimoto's 1999, Celiac 2003, Raynaud's 2004, Costochondritis 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)


montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 3/21/2007 5:26 PM (GMT -7)   
Hey Hippie!
I have blinding headaches and found that my eyes are affected as well.
Usually,the headaches are worse if there is any light what so ever,and it usually starts in my eye.I was given a patch to wear ,let's see if it makes a difference! Kids think I just want to dress like a pirate-uh,huh,your fathers wench!LOL!
I go to the rheumy tomorrow and will see what he comes up with.
I am going to see a doctor of chinese medicine,so maybe a little rhino hoof,antler velvet and toadstools do the trick! Who knows what they use,but my father-in-law,and husband swear by this guy...I'd drink almost anything if it helps,tried to quit smoking,that lasted all of 4 days before I almost hit rinse cycle! Husband is going to be disappointed,I'll have to divert his attention to who got in trouble at school!lol! OOPS,won't work,that was the neighbors kid!
I don't know what to suggest in regards to the headaches,but could it be from the virus? Hope you feel better,that virus stuff sure is a butt-kicker,have you been to the opthemologist? The eye pain is probably the toughest to deal with a lot of days,hope some one can help provide us an answer. Take care,pray you feel better crystal

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/21/2007 5:27 PM (GMT -7)   

Ouch Hippi,

  Do you have a history of migraines? It sounds alot like them, but with lupus its hard to tell sometimes. Most of my headaches are one sided or in the back of my head, but as you know we are all different. I hope you get some relief soon from all this. Keep us updated and take care. You are in my thoughts and prayers.

                                                       ((Hugs)) Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/21/2007 5:46 PM (GMT -7)   
When I started to get regular headaches that were just like you're describing, my rheumy increased my pred from 10mg to 15 mg and that took care of it. That was last fall & I'm still at 15mg.

The site
http://www.drugstore.com/pharmacy/drugchecker/druglist.asp
says
ASPIRIN and PREDNISONE
Severity: Moderate

Description: Treatment with both aspirin and prednisone may result in an increased risk of an ulcer in your digestive tract or aspirin not working as well for you.

Before I got the pred increased, Ibuprofen seemed to help the headache -- that's what my rhuemy sai dto use w/my mix of drugs (shown below)

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Post Edited (Lynnwood) : 3/21/2007 7:13:37 PM (GMT-6)


ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 3/21/2007 6:22 PM (GMT -7)   
Hi Hippimom
 
Sorry your suffering with that horrid headache! If your doc will let you take the advil, maybe he will ok the advil liquid gels, they are fantastic, and recommended for migraines..but it also helps if you take them with caffeine. It usually works for me, and I think I recognize your symptoms..all across the front of your forehead, then radiates down the face.(((()))) hope he says yes, but dont forget to drink a tea or coffee with it, or cola too I guess.
 
Take care, hope you get rid of it sooooon.
 
Diane
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
 
sotalol, digoxin, coumidin, plaquenil, prednisone, metformin, diamacron, wellbutrin,fenofibrate


MomofC&C
Regular Member


Date Joined Aug 2006
Total Posts : 32
   Posted 3/21/2007 7:19 PM (GMT -7)   

Hey Hippimom!

I have been suffering from some pretty nasty headaches lately too so I know what you are going through.  I have found that a quiet, dark room and lots of rest really seems to help.  I take pain meds when it gets really bad but I have also found that strong narcotics cause more headaches.  I have also found that if I am the least bit dehydrated, the headaches are worse so try to keep yourself hydrated especially with water and juices.  Caffiene helps short-term but the headache always returns and is usually worse. The other thing I have noticed is that if strong weather fronts (esp Lows) come through I have more headaches (must have something to do with my inflammation).  Luckily, I live in FL  so we don't get a lot of strong lows in the winter months.   I hope you feel better soon.   I am thinking about you.

 


Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil


Snr
Regular Member


Date Joined Dec 2006
Total Posts : 66
   Posted 3/21/2007 9:46 PM (GMT -7)   

Hippi,

I too have headaches that often turn into migraines.  They started while I was deployed to Iraq.  Once I returned I thought they would go away.  I thought they were stress related due to being in Iraq.  The headaches increased to where I was having them daily.  Military doctors only wanted to treat the headaches.  Now I am in Korea and on meds and when I do have headaches they last 4-5 days.  My migraine medication doesn't work; only thing seems to work is morphine.  It knocks it right out.  Take care and I hope you start feeling better!

 

God Bless!

Snr


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/22/2007 7:16 AM (GMT -7)   

Hippi,

  I hope your headache is better today. Take care and keep us updated when you can. Your in my prayers.

                                                        ((Hugs)) Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/22/2007 4:39 PM (GMT -7)   
Thank you so much, all of you for all of the replies and ideas. Babs, you are right that it is probably hard to tell if these kinds of headaches are migraines or lupus headaches. I never had these kinds of headaches before having lupus though, so who knows. It's interesting that a lot of us have the same types of headaches. MomofC&C, thanks for reminding me about dehydration - I often forget to drink enough and that could be part of the problem and I also didn't think about the weather. We all of a sudden got warm, humid weather with rain and thunderstorms. It's supposed to be like this for the next week at least.

Daine, I might try the advil liquid gels. I'm not supposed to take NSAIDS on a regular basis because of protein in my urine and stomach problems, but I do take them when I get menstrual cramps for just a short period of time. Like a lot of you said, a dark, quiet room and some type of pain med seems to be one of the only things that helps.

Today was a crazy day - my son's JRA flared up really bad so I had to get him from school and I drove him 1.5 hrs (one way) to his doctor to get labs done. Before I left, I felt a headache coming on so I took an extra 2.5mg of prednisone (for a total of 10mg) thinking about what Lynnwood said about increasing the prednisone and I took some Aleve and it seems to have stopped the headache in its tracks and the extra pred gave me the energy to get my son to and from his doc. I'm betting the prednisone helped.

And Crystal, who knows, as a last resort, if these headaches don't go away I'd try some moose antlers and rhino hoof extract, lol.

Needless to say I will talk to my rheumy when I see him next month or I may have to call him if these headaches continue on a regular basis. It's interesting because when my son's JRA flares he gets the same kind of headaches. I asked him today where they hurt and it was like he was describing my own headaches.

Thanks again everyone. I'm going to make sure to stay hydrated and I know I have my rheumy's permission to be at 10mg of prednisone if I need to be.
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 3/22/2007 5:15 PM (GMT -7)   
I used to get migraine/headaches 2-three days nonstop headache/migraines on a roll, everymonth. It's usually before, mid, or after menstructral. Sometimes six days on a roll. It really annoyed me. I tried Immitrex, and it works very good, but it is very expensive for me. Then the Internal medicine doctor discussed with my Rhumty and prescribed me verapamil 110 mg. I am taking it daily, and it helps. I sometimes don't get the headache/migraine pain. Even if I do, it usually once a month. It really improves a lot. One sign effect of vereapamil is constipation. But u can solve it by taking Rasin Bran cereal.
Yours sound like migranine. Mine's are like that. It's like those sharp pain, to the eyes. I don't even want to think about it. Anyway, talk to your doctor about your headaches, and see if he/she can prescribe you anything.
Advil migraine is good. Take it when u know the pain is coming. Then it helps. Otherwise, it won't help at all. Tynenol extra strength is somewhat helpful, but not too much (it's better than nothing).
But if u are going to take it every day, don't take Tynenol (spell wrong).

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 3/22/2007 5:21 PM (GMT -7)   
Hiya Hippi,
 
So glad you are feeling better today..but oh so sorry that your son is also having a flare (((((())))))). And also..I hate to bring this up...but..... please read
 
Federal researchers say the painkiller naproxen, sold over the counter as Aleve, has been linked with a 50-percent higher risk of heart attacks and strokes. Arthritis sufferers have been switching to naproxen after warnings that the drug Celebrex also carries added risk of heart attack and stroke. NPR's Richard Knox reports.
 
Just thought I wud post that hon, because we had the warning up here in canada a few months ago.  But maybe ask your rhuemy when you see him next.
 
Take care
Diane
 
PS..I will post this as a new topic too..I know Aleve is a very popular drug in the US of A
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
 
sotalol, digoxin, coumidin, plaquenil, prednisone, metformin, diamacron, wellbutrin,fenofibrate


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/22/2007 6:52 PM (GMT -7)   

Hippi,

  I'm glad the increase in pred helped with your headache. I hope this gets under control for you soon. You have been having a rough time lately.

  I'm sorry your son had a bad flare today. I hope he is feeling alot better now. Please keep us updated on you and your son. Take care and get some rest.

                                                                  Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/23/2007 5:59 PM (GMT -7)   
Hi Hippi, I'm so sorry to hear that your son had a flare ....I hope that he is on the way to feeling better. Just another idea to think about...I was waking up w/headaches and getting bad headaches starting at the base of my head and going into my eyes. My pcp sent me for a sleep apnea test as that was one of many symptoms that I had. My pain management doctor and PT say that it's because of degenerative arthritis in my neck. My PT has given me exercises to do at home and I also have a tens unit that I use a couple of times a day....that gets rid of the headache .I have a good Pt who does spinal manipulations and they help too. My pain doctor also put me on neurontin as a pain reliever and a muscle relaxer after I fell and had a set back. Well, the lab tech called and I have sleep apnea and they set up another test for me next week with a c-pap(forced air pressure and oxygen). I don't know how I'll do with that, but if it also prevents headaches, that will be a plus. I didn't know that lack of oxygen while sleeping could cause headaches during the day.

I'm glad to hear that the pred. increase helped. Again, I hope that your son will feel better soon. Cecelia
Rest well, nesting is healing,  peaceful harpist 
 
Lupus(both SLE and Sub-Cutaneous Lupus),degenerative disc disease, multiple conective tissue disorder,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's and Rosecia, vit. D deficiency.  Medications: Plaquenil 400mg. day, Tramadol 100mgs 2-3 day, Neurontin 300mgs day, effexor 225mg day, Ativan 1mg 1-3day, Preacid 30mg day, Metroprol 25mg day, Levothyroxine 50mg day, Mobic 15mg day, Hydrocodone 500mg as needed every 4 hrs., Azelex Cream 2 x day, vitimin D supplements, iron/dextran infusions every 3 monthes and sun screen.
  
                     
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/23/2007 6:12 PM (GMT -7)   
Well, I took 10mg of prednisone again today and it is really helping with the headaches. I think that with everything I have been through the last month or so, I will stay at 10mg for a while to try to get things with my body back under control. I'll probably call and leave a message with my rheumy regarding this. We go on vacation in a few weeks and although I'm excited, the traveling is hard on my body, so I think staying at 10mg through vacation will be a good idea.

Cecelia, my husband just started using a c-pap and it has worked wonders for him. His snoring was unbearably bad to the point where I'd kick him out of bed and into the guest room a lot of nights. You could hear his breathing being interrupted by the snoring too. I had never thought of apnea for myself, but I will keep that in mind if things don't continue to improve.

On a side note, my son is doing a little better today. His doctor thinks that when he gets the flu or a cold or any virus or infection, his immune system doesn't know what to do with it and it causes his arthritis to flare up. Now he's developed a chest cold, so I hope that doesn't continue to set him back. IT seems like once he catches something, his immune system is shot and he catches everything under the sun for a while. He's such a trooper though and he continues to amaze me.
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 3/23/2007 8:12 PM (GMT -7)   
Hi Hippi:

I'm glad to hear that the extra pred is helping you. I think you've got a great idea about staying on the extra pred for a bit. You've been through so much this past month, your body needs to readjust itself.

I'm so sorry to hear that your son is in a flare and has a chest cold to boot. You both are in my prayers. I can't do anything to help, but I certainly can relate to all you're going through. I used to suffer from horrid headaches, now I only get them on rare times. I've been given Zomig to use for my headaches when they are really bad. The meds kick the headache real quick, but I'm left with body aches like having the flu from it.

I hope that you'll be able to get plenty of rest as you prepare for you vacation with you family. Try not to get to worn down before you go. I know there's lots of stuff to be done before you go, but try to take it easy. I hope you and your family enjoy your vacation.

Soft gentle (((hugs))) to you and your son. Have a good night and rest well.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

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