SLE - sharp pains in head

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Pajamamama
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Date Joined Jan 2011
Total Posts : 4
   Posted 1/28/2011 9:56 PM (GMT -6)   
Hi all. I'm new to the lupus forum but was diagnosed with SLE a couple of years ago. A few flares with joint pain, fatigue and rashes. Some pleurisy. Saw rheummy today for severe inflammation all over. New scary symptom tonight: sharp stAbbing pains in the left side of my head for a minute or so...totally incapacitating. Does anyone else experience this with flares?

Thanks!

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 1/29/2011 10:57 AM (GMT -6)   
You should see your doctor or go to the emergency room immediately.  Your pains could be from lupus but also could be something else. 
 
Don"t wait.  That type of pain is not normal.
 
Bill

Pajamamama
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Date Joined Jan 2011
Total Posts : 4
   Posted 1/30/2011 6:38 AM (GMT -6)   
Bill - thanks. I did call my doctor and he said that it could be an aggravated nerve. He said to wait and see if it happened again. Well it hasn't been severe but there is definite intermittent pains and pressure and prednisone isn't touching the swelling joints. Just feel sick all over. Will go to urgent care when they open today.

Jessica

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 1/30/2011 10:10 AM (GMT -6)   
Jessica,
 
You should talk to your doctor about your meds.  If you are having flares you either need to step up the dosage or change meds to find something that controls your lupus.  How much prednisone are you on?  Any other controlling meds?
 
Bill

Pajamamama
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Date Joined Jan 2011
Total Posts : 4
   Posted 1/30/2011 7:47 PM (GMT -6)   
Bill I had just come back from a week in Florida visiting family. Took precautions but didn't help. I've been on plaquenil only with prednisone only to treat issues as they arose. They upped the dose prescribed Friday from 15 mg to 40mg to alleviate the swelling. That was all the ER could really do and the headaches said to be neuropathic. I am feeling a little crazy with all these new symptoms...scared...but feel lucky that it is all manageable.

Any tips on communicating with doctors? They don't seem to rheumaticalogically savvy at the ER.

Jess

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 1/30/2011 10:23 PM (GMT -6)   
Jess,
 
You can't expect ER docs to know how to treat AI diseases like lupus.  They are just for times when you can't see your rheumy.  Time to go to your rheumy or even get a second opinion.  If plaquinel is not controlling lupus then another treatment should be considered.  Plaq is just a first level of treatment and there are much more powerful meds or combinations that could be used.  Of course, no one wants to be on pred any longer than needed.  I have been taking pred since mid 2005 but the dose is so low now there are no side effects and probably no theraputic value....who knows.
 
I see many who go on and off meds and have a perpetual roller coaster of flares and temporary remissions.  Not good.  It takes a long, long time to get an immune system under control and some patients need controlling meds indefinitely.
 
Your headaches could be lupus related or something else.  You need to be alert if they continue and find out what it is. 
 
As for communicating I used to prepare all my questions in Word and ask them one by one.  The first time I visited my rheumy at Northwestern I had 26 questions.....he and his associate answered every one of them patiently.  Now I have few and the main debate I have is getting off my meds but that is another subject.
 
 

Leilani'smom
New Member


Date Joined Jan 2011
Total Posts : 4
   Posted 1/31/2011 10:36 AM (GMT -6)   
My 8 year old also started compalining of sharp pains to her temples. I told her to go take a nap maybe she was tired, but it has happened more than 3 times in the last few weeks. Let me know what you find out! Thanks

Pajamamama
New Member


Date Joined Jan 2011
Total Posts : 4
   Posted 1/31/2011 10:48 AM (GMT -6)   
In my case they evaluated for an emergency and weren't concerned. Rheummy believes it is an irritation of the nerve over my left ear.

That said, I would certainly call the doctor immediately because,as we all know, everyone has different symptoms and issues. Better to evaluate and rule anything serious out.

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/4/2011 10:44 AM (GMT -6)   
about Emergency Rooms:

You will never get a diagnosis from a Emergency room....only something to alleviate the symptoms and a follow-up to your regular physician or specialist. It's why I will never go to one again.....years of expensive visits to the Emergency room with "band-aids" and follow-up to another have me concluding this.

Now, common sense is that if you are having symptoms of stroke or heart attack that is another matter and you SHOULD go.....
"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not when I came to die, discover that I had not lived." Thoreau

SIKbailey
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Date Joined Jun 2008
Total Posts : 6
   Posted 2/24/2011 3:41 AM (GMT -6)   
Jessica-

When I was first diagnosed with lupus I was getting those headaches, and they were excruciating. I would probably have to say worse than any other individual symptom of the SLE. I was lucky enough to have the butterfly rash show up during a visit to my allergist, so I was diagnosed fairly quickly after my symptoms and ailments started. That was three years ago, but in the first few months, I was in the ER almost once a week because the headaches were so bad, I couldn't eat and I missed a lot of school. I rarely got them after about three months of being on plaquenil. But the ER was definitely no help at all. They let me lie in a bed for hours while they took blood, told me it was probably just a migraine or PMS, and proceeded to prescribe me pain medication that I've had an allergy to since I was 2!

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 2/24/2011 9:43 AM (GMT -6)   

Hi Jessica,

I agree with Bill.  It's better to get this checked out, especially if it is recurring and I would recommend you see a neurologist - if you can, one who specializes in headaches.  I have lupus which causes headaches, I also have migraines, and I also suffer from occipital neuralgia.  So as you can see there are three different 'headache types' that I suffer from.  But only a specialist can diagnose you correctly based on the symptoms, the origin of your pain, and by any diagnostic tests if necessary.  The reasons it is so important is because each one has their own line of treatment in their own right and unfortunately (at least in my case), one treatment won't treat the other.

I hope the best for you... chronic headaches are the worst.  cry  

Take Care


Dx: IBS, Diverticulosis, Idiopathic Acute Colitis, SLE, Sjogren's, Localized Scleroderma, Raynauds
 
Meds: Plaquenil 400mg/day, Pred 5 mg/day, Topamax 100mg/day, Lodine 500mg/day, Protonix 40mg/day Methotrexate 10mg/week, Arava 20/mg (what next???), Vicoprofen PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 2/24/2011 4:04 PM (GMT -6)   
Definitely better to get things like that checked out. As a nursing student I usually know what the "worst possible scenario" could be with a certain symptom; sometimes I wish I didn't know! Pain like that could be caused by an aneurysm or a clot (or other non-life-threatening things, of course). Please rule out the first two before you do anything else!

Kathryn
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