Monday, May 31, 2010 Ellen C asks

Q: Headaches and RA or Lupus

I have RA and Lupus and for years I never had headaches but in the last year or so I have been getting horrible headaches.   That call them some sort of migraine but that don't respond to any normal treatments methods.  Since it got warm I have gotten one almost every day and I'm tired of them.  Any ideas?

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Answers (2)
Lene Andersen, Health Guide
6/ 2/10 12:29pm

I get migraines, too and they are awful. If yours get worse in warm weather, it may be related to barometric pressure or the heat itself. I'm assuming you have had your blood pressure checked and a general workup to make sure there's nothing else going on? Are you on any medication for your autoimmune disorders such as e.g., Humira? Some of the meds to treat these conditions can cause migraines as side effects, so you may want to look into that.

 

My best suggestion is to refer you to our Migraine site. They have a ton of good information about migraines, as well as the Q&A section with people who know far more about this than I do.

 

Good luck!

 

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5/27/11 9:27pm

I have had mirgraines since I was 7. (told kids don't get headaches,ha!) Found out I had Lupus when I was 26, (really had it all my life)

I'm 60 now. About 8 years agao I got some little red capsules from a friend that suffered as I did with migraines and they WORKED!!! They're called midrin. The generic ones don't work for me, but they may work for you. I've had all the ct scan with contrast etc. Nerve tests, sleep tests AGHHHHHHHHHHHHHHH

just wasted money. I take the midrin as soon as I see the "lightning" or ANY feeling of pain in my head. The change of weather does seem to bring them on much more. The pain is so bad that even high dosage of morphine doesn't help! I have lost my sight with these migraines, loss use of my right side, can't seem to put a whole sentence together, it's like the brain just wants to stop working because of the pain. Midrin must be taken (2) at the first onset of pain, then 1 more capsule every hour (up to 5).

Good luck to you.

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Lene Andersen, Health Guide
5/27/11 9:57pm

thank you so much for this tip!

 

btw, have you been to our Migraine site? It sounds as if you've got a handle on things, but if you're interested...

 

You might also want to check out our contest - it runs until Tuesday midnight and you can win a $200 CVS giftcertificate.

 

Thanks again for the Midrin tip - I'll remember and let otehrs know, as well.

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6/13/10 9:03pm

Could be Fibromyalgia now as well. One of the symtoms of that {as it mimics RA and Lupus and MS} is headaches and migraines. Many people w/ RA and Lupus can get FM as another diagnosis...it's not that uncommon. The meds for FM might help the headaches...like Lyrica, Savella or Cymbalta.

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6/13/10 9:54pm

I tried Cymbalta last summer and it worked great for the fibromyalgia but it gave me anxiety attacks.   It was the most pain free I had been in a very long time but I couldn't handle the anxiety.   It may have had something to do with the headaches going away last fall.      Thanks

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6/14/10 6:29am

I'd say try Savella...works great for FM and pain...(it's an antidepressant as well that is FDA approved for FM) but w/ me--it gave me the night sweats like you would not believe...when that started happening during the day too...I had to stop. I looked like I ran a 10K before going to work every morning w/o taking a shower. lol Laughing But everyone is different, so your body might react differently to Savella -than mine did. G'luck. ~

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6/14/10 7:41am

I have never been able to figure out which drug is causing sweats.  I'm 56 so I keep blaming sweating on that but it isn't the same as other people.  They are very strange sweating episodes, mostly on the back of my neck.  Like you said I look like I have run a race or something.  It is very embarrassing.  I can acutally be cold in other parts of my body and be dripping sweat off my head.  I think I'll leave a drug like that alone.   

I have been trying to stay out of bright sun or only with very good sunglasses and that is helping with headaches.  I know I have something wrong with my eyes and I think it is making my eyes overly sensitive to sun.

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6/14/10 3:42pm

Have you had a CT scan to check for chronic sinus infections? I just did...that's what's causing my headaches...but I usually can feel the congestion around my temples and cheeks moving.

I take Augmentin for that..helps the sinus infection and therefore the headaches...does NOT help in the stomach dept. lolTongue out

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6/15/10 8:43pm

BC / BS spent almost 40,000 last year trying to find out what caused my headaches.  I think I had 3 or 4 CT scan.  I had every kind of test anyone could think of.  We changed so many things after awhile that we never figured out what made them go away.   From August till last month I was headache free.  I have only had a couple but I live in fear that they will return in earnest.  
Sinus was the first thing they looked at on me I wish it had been that simple.

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6/15/10 11:33pm

I'm learning that our bodies are just that simple as we age huh? lol Although this Rheumy thought I was younger than 35...he still thought 35 was very young. Ya, I wish...lol.

 

Funny you bring up the CT scans. My husband just sent me a link yesterday at work in regards to how easily a dr requests a ct scan...or xrays...and how much radiation we are getting in a short period of time. Evidently the FDA wants to approve something where you have to put the right dose according to a person's weight and height...or radiation...and right now they don't.

 

So the fact I just had about 12 x-rays of my neck and spine last August, 5 of my knees, 30 of my hands wrists toes and ankles and chest in May of this yr...a CT scan of my sinuses by the ENT dr on June 1st...and now new Rheumy wants a bone scan and I need a KUB x-ray in July to monitor my kidney stone...I'm thinking that's a lot of radiation according to the article on yahoo that I was reading. Laughing

They said you should ask the person taking the x-rays or CT scan what the radiation DOSE is...

I'm sure if I did...they'd look at me like I had 2 heads...and say, you're just here for a CT scan lady...lol. But ya, drs ask for those tests all too frequently. And the article said MRIs should be utilized more...but you know ins. co's aren't gonna pay for that if they don't need to. ;)

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6/15/10 11:34pm

s/b our bodies "aren't that simple"...sorry...tired...;)

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6/16/10 8:51pm

omg that's a horrible amount of xrays.   why so many of your wrists and toes.  If you divide by 4 that is 7 views for each that does seem like a lot.  I also don't think you should care whether they look at you like you have two heads, you can ask anything and you should.  That sounds like enough to make a difference.

 

 

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6/17/10 11:38am

Who knows. My husband was upset that it took 45 mins for xrays and the 1st visit w/ that Rheumy was no lie 7 mins. He was allotted I found out from his BOSS a 1 hr consult...but he was so sure I had swelling in my PIP joints 2-3 on both hands, that he said that's all the time he needed. Did not care what other issues I had..neck pain etc. Said Fibro is all in my head...don't believe any dr that tells you that is it.

He also called the Rheumy that diagnosed my w/ benign FM a crazy loon in front of me..and continued to say...that all his access rights were taken away at mass general hospital -which is funny considering the Rhuemy I as seeing now..knows both..and said no access rights were taken away from the one that told me it was benign FM.

But ya w/ my hand, I had to move it in so many directions...like it had to lay flat, then I had to have it on it side, then I had to tilt it at an angle, then I had to change that angle ever so slightly...it was ridiculous. But hey, when they aren't the one's being shot up w/ radiation all the time..what do they care. He never cared that other drs had asked for x-rays of other parts of me, that I had CT scans coming up for different issues...because he never took the time to ask.

Well the 3 fingers he said my PIP joints had it in and were swollen came back normal. He said he found it on both sides. I do show a mild erosion at the carpometocarpal joint in my 5th finger. New Rheumy said you can see early RA there or early IA but not in that joint. That joint is consistent w/ dislocations and fractures. He said that's why the radiologist from the old place had to put, doesn't seem to be a fracture or dislocation because --that's where you'd see them...in that joint itself. Also have some mild erosion in the right wrist...but again the new Rheumy said...something is not adding up. He wants a bone scan...I am thinking maybe an MRI of that hand and wrist...cause honestly..I don't want any more radiation in such a short period of time.

So ya, if my new Rheumy requires more extensive look into that hand and wrist than I am going to plead my case about how many CT scans and x-rays from August 2009 until now that I have had. I'll see what he says. But yes, my report from the last Rheumy says 3 views of the right wrist, 3 views of the right hand, and then 3 views of the left wrist and 3 of the left hand. That's just 12 right there. NOT including, the feet, toes, ankles. Plus he threw in a chest x-ray for good measure. I'm glowing Drakon. lolLaughing

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6/17/10 6:54pm

I think you better start asking questions.   I just went through the same thing with switching Rhuemy's.   It freaks me out when they start putting each other down.

Somehow I feel stupid.  I just ran into the same problem with my eyes.  I have been seeing a doc for two years with an eye problem but I had an emergency and went to see a different doc and he totally discredited my regular doc.  Now I don't know what to do.  

 

I get tired of it at times.

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6/17/10 7:28pm

You know...they are all in business, and they want yours, so going through as many drs as I did to finally get 3 that agree on what it is -is good. But I do feel stupid too, because when you go to any dr. whether Rheumy or Ortho, you figure, hey they are a dr; they know their stuff. And when you tell another dr. that I don't mind if they discredit it...because I know they want to be the ones you go back to...it just confuses you. I DO MIND when they call your previous drs "crazy loons, quacks, etc". But I only had one dr. do that. I reported him to Consumer Affairs at the hospital I saw him at. They really could care less that I reported him. They did say he shouldn't have said that IN FRONT of me, he should have kept his opinions to himself...but they really weren't like "OMG, that's horrible that he said that either..."

 

You have to go w/ what your heart, head and symtoms tell you it is...and if you need another opinion w/ an eye dr...go. Just don't tell them what the others said. See if they can validate one of the 2 drs you just saw. Wink

 

p.s. I do ask questions A LOT..that's what got others upset w/ me. ;) I think they think I am trying to discredit them as a doctor. I'm just trying to HELP me. I don't care what they think in their heads about me questioning them. That's their problem if they can't deal w/ questions. 

The new Rheumy has no problem w/ my questions or reassurance when I need it-which is good.

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By Ellen C— Last Modified: 05/27/11, First Published: 05/31/10